A Ray of Sunshine and a Ladybug

Chili Dawg's Story...

2012-02-06T20:32:00.001-06:00

When Chili Dawg was diagnosed with cancer, I felt like the world stopped spinning. Little did I know that our cancer journey was going to lead me to one of the most supportive communities that I have ever met. Every time a new person shows up, we usually say, "welcome to the club that no one wants to join, but everyone is glad they did," and that is totally how it is. You don't want your dog to lose a leg or have cancer, but the people you meet through that are some of the best people you will ever meet. One of my friends on the tripawds website wrote this story for Noah. Her name is Shari and she gave me permission to share it. I put it on my tripawds blog, but I also wanted to put it on this one as well.

Chili Dawg's Story

The day was quiet and peaceful and serene. Of course it was. The Father approached a group of dogs dozing in the sun near a large Catalpa tree. The tree was in full bloom, as always, and some of the dogs were asleep in the tree's shade. As the Father approached the dogs, a few lazily opened an eye to glance at him.

The Father sat down in the grass under the Catalpa and began to pick apart sprigs of grass. The dogs roused themselves and became more alert. A Dalmatian looked at his companions and then at the Father and asked, “Is everything okay?”

“Well,” said the Father, “I have a need, and it will be difficult.”

“Ah,” said the Dalmatian.

“Go ahead and tell us,” said the Collie, sitting up.

The Father looked at all the dogs in the group before answering. “You know I've asked many of you, my companions, to help in earthly affairs over the millenia. I have a need now that is urgent and I cannot simply assign it to one of you. This is a need whose fulfillment must come as a gift.”

“Well, tell us what makes it so difficult,” said the Beagle.

“And urgent,” added the Scotty.

The Father smiled at them briefly, and then his brow creased with concern. “My friends, there is a young woman who has become discouraged and defeated. She has been injured and her injury has been devastating. She is not healing. Her spirit needs more than it is finding in her life. She has much love surrounding her, but she needs more. She needs one of you.”

The dogs looked at each other for a moment before the Poodle spoke. “Father,” she said, “we've done this before. Why is this different?”

“Because you won't be coming back,” replied the Father. “Not right away. Not for a long time. I am asking for one of you to voluntarily give up your home here and live a natural life there. With her. With the family she will make. Her need is great enough to require your love and dedication for a natural lifetime. This will not be a quick trip.”

There was silence as the dogs considered what they had been told. The few who remained laying down now sat up, and many shifted their weight nervously as they thought of the implications of a giving up their place here and living for years with this woman whom they did not know. Finally, the Husky spoke. “It sounds like a lot of work,” she said.

The Father looked directly into her icy blue eyes and said, “Yes.”

“And it sounds like there is no guarantee that it will be easy,” said the Saint Bernard.

“No,” answered the Father.

Again there was silence. After a moment, the Father rose and turned to walk away, intending to allow the dogs to consider what he had said.

“Wait.”

The Father stopped and paused before turning around. He knew who had spoken.

“Father, I just have one question.” The ruddy Golden Retriever stood but looked at the ground.

“Of course.”

The Golden looked at the Father and asked, “Will I be loved?”

The Father's eyes crinkled as he smiled broadly. “Oh yes! Indeed, you will be loved beyond what you can imagine!”

The Golden paused. “Then I will go.”

The Father nodded slowly. “They will give you a name. I can show them whatever name you would like to be called. You are a beautiful, gentle soul and can choose a name to reflect your spirit.”

The Golden thoughtfully nodded. He sat back down and gazed off toward the river shining in the distance. A slight smile came over his face as he turned back to the Father. “Please tell them my name is Chili Dawg.”

Murmurs broke out among the other dogs. They had been sitting respectfully as the Golden and the Father talked, but now some of the murmurs turned to laughter.

“What?” asked the Father. “Why in the world would you want something like that? That sounds like something a Labrador would pick.”

The Labrador in the group laughed loudly and raised a paw in the air and waved it.

The Golden smilingly said, “Well, if this is to be my life, I want to enjoy it. I want to be loved, and I want to have fun. So I want a fun name.”

“Oh you will have love and fun both, Chili,” said the Father. He walked over to the Golden and squatted down to look him directly in the eye. He put his arms around the dog's neck and buried his face in the ruff of his neck and whispered, “You're a good boy.”

The Father stood up and looked at the group. He asked, “Do any of you have any questions?”

“Yes sir, I do,” said the Boxer. “Can I go with him?”

A look of thoughtful amusement crossed the Father's face. “Hmm, two of you? Well...yes, but not just yet. Chili will give a great gift that will cost him a great sacrifice. This family will need you more then than now.”

“Sacrifice?” asked Chili.

“Yes, Chili. Gifts this special cost a great deal. Surely you know that.”

“Yes,” said Chili. “I do. But what does this mean for me?”

The Father walked back to Chili and put his hand on Chili's head. “You will take away her pain with your love and acceptance. But you will know pain as well. You will live as an ordinary dog and you will have extraordinary love. When your time is done, you will die from a perfectly ordinary disease. You will be released from your pain, and that release will again cause great pain to this woman, to her family. Then you,” he said, nodding to the Boxer, “will help them heal.”

The group of dogs murmured again. “But Father, “said the Greyhound, “when does this ever end?”

“Yes,” said the Pug, “if we heal a human heart, but then their heart breaks again when we leave, when does it end?”

“Well,” said the Father, “I have made the human heart with the capacity to break and heal this way over and over again. The best thing I ever did when I made them was to give them the ability to persevere and take chances, even when things seem bleak. They find their strength in this breaking and mending. This is how I demonstrate my love through them. My heart breaks when they leave me, but it is always an open heart, waiting to be healed with their return. When one of you leaves them and their heart breaks, there is another waiting to show them how to love and heal again. Their capacity in this is endless, as is my love.”

“I understand,” said the Boxer. “I will be needed, so I will wait here until you tell me to go help Chili.”

“Thank you,” Chili Dawg said to the Boxer. “I have a feeling that I will need you more than I can imagine right now.”

“Well Chili, you'd better get ready to go. There is a man down there who doesn't know he is expecting you. He has a wife who doesn't know she needs you. She won't be thrilled to see you, Chili, but she will come around. And you will be amazed at how fiercely she will come to love you. And the children, too.”

“Children?” asked Chili and the Boxer together.

“Oh yes!” said the Father. “Didn't I tell you there will be children one day? Would it have made a difference, Chili?”

“I would have volunteered sooner, had I known I would get children,” Chili said. His big tail swung broadly with happiness.

“Then let's get you there so you can get to work. And you, my Boxer friend, won't have long to wait. Now, let's go.”

Chili walked over to the the Boxer and they touched noses for a moment in goodbye. The Boxer sat down under the tree, prepared to wait as long as was necessary. Chili turned and left, ready to begin his new life as a perfectly ordinary, extraordinary dog. And on earth, a family had no idea of the gift that was about to come to them.

Tripawds & Monkeybutts

2012-01-01T09:18:00.000-06:00

I hung my Tripawds calendar today. Guess who's Mr. January?

I also hung my Monkeybutt calendar today. Zephie is Miss January, but Finchy will make an appearance this year.

A Final Tribute To My Special Friend...

2011-12-30T14:39:00.001-06:00

Ever since we had Noah, Ryan makes a DVD of all the videos we record of the kids and dogs from the year and then we send them to all our family members scattered across the country. This year, Ryan said to me, "I want to end the DVD with a tribute to Chili Dawg". I told him I wasn't ready to go through all of the pictures of him yet. I am healing, but I have not reached that part of the journey yet. Don't believe me? I have a box of photographs that I ordered before Chili Dawg crossed the Rainbow Bridge that arrived after we put him to sleep. It is still sitting in the same spot in our bedroom and hasn't moved or been opened yet.

My loving husband understood what I was saying, and sat down at the computer for several days and pulled pictures of Chili Dawg from the 8.5 years that we had with him. He had only one request of me- I had to choose one of the songs that played in the video. I didn't want to do that either, but the day came when Ryan forced my hand and I chose a song by Jason Castro (the kid with the dreads from American Idol), and Ryan chose the other song also by Jason Castro.

I know many of you are tired of me writing about Chili Dawg, and that is fine (that's why the heading says "a final tribute"). There are just a couple more things that I would like to share about him before we begin the new year.

Several people expressed concern that we amputated his leg, saying dogs are meant to have four legs. We learned through this journey, that as they say on the tripawds website: "dogs are made with 3 legs and a spare". Since Chili was only with us for a short 3.5 months post-amputation, these "doubters" did not get to see him on his three legs, so I want to share a video of him two months after his amputation. I don't think he looks like he's having a hard time, do you?

I realize that Chili Dawg was not my whole life. However, he gave me a gift when he broke me out of my depression after my brain injury. He was my special companion, my heart dog. There will never be another one of those.

Today marks four months since Chili Dawg left us, and the last thing I want to share is the video that Ryan put together to remember Chili Dawg. I think he did a really nice job, he even included my parents' Fred the Beagle & Jaime & Bill's Princess Leia in it who crossed the Rainbow Bridge before Chili Dawg. So, sit back and enjoy the final tribute to my special friend.

Happy Birthday, Ryan!

2011-12-19T15:54:00.000-06:00

Today is Ryan's birthday. He claims he's a "Fall baby", because Winter doesn't start until December 21st. He will argue this point with you until you are blue in the face, so don't even try to explain to him that he's not really a Fall baby.

There are many reasons why I love my husband. Here are just a few.

5) The man can cook! Have you ever had his Green Burritos?!? I could eat those every week and never get tired of them.

4) When we found out in May that the Chili Dawg had a cancer that was fatal, he still made the decision to amputate his leg, knowing that was what I wanted to do, but was afraid to say because of the cost. Then, in August, when we had to put the Chili Dawg to sleep, he made sure the paperwork was filled out so that I got Chili Dawg's ashes back.

3) He has a work ethic like no other (which is good and bad at the same time). Three days a week he gets up at 4 AM to work out or go for a 5 mile run. I prefer the comfort of my bed too much to get up that early to workout.

2) He is most content staying home with the family (again, good and bad at the same time, because I think he may turn into a hermit if I ever die and the kids grow up & move away).

1) He is an excellent dad. He took the day off to take Juliana to the cardiologist, and also was able to make it to Noah's preschool program afterwards. On Sunday when Noah desperately wanted to have a picnic for lunch, he set up a picnic lunch in the living room with the Polar Express on.

My list could go on and on, but I think you get the point. Happy Birthday, Ryan!

Christmas Surprise...

2011-12-16T20:03:00.000-06:00

The last 2.5 years have been a bit draining both emotionally and physically. Juliana has had a lot going on health wise, and then Chili Dawg was thrown into the mix this past year. When we lost him, things just seemed to drain me even more. Going into this month, I wasn't looking forward to Christmas. I tried to get into the spirit for my kids. Noah is looking forward to it so much. He picks the story about Jesus' birth almost every single night.

This week, things stepped into high speed. Ryan went out of town. Juliana had her re-evaluation for physical therapy. I didn't even think about it, because she was discharged from PT back in April, she didn't qualify for it when she was re-evaluated in July, so I didn't even think I should consider it when time came for it this month. Juli requalified for PT. It's not a bad thing, I know. She's going to get the help she needs, so hopefully she won't need it later in life. It was just one more thing added on. Tuesday night, I was pretty bummed. I stayed up later than normal, having a paper grading fiesta (the end of our semester is the 22nd, so I have to stay on top of my grading right now). When I finally went to bed, I was just drifting off to sleep, when a cry made me sit straight up in bed. I stumbled into Juli's room and was hit by THE odor. I started to call for Ryan, because I needed backup, and then I realized that I was alone. I wanted to cry, because the vomit went from one end of the crib to the other, all over the bumpers, the sheets, blankets, and all over Juliana and her hair. The saddest part? She was crying and was sound asleep.

I stripped as much off her crib as I could with her sleeping, got the washer started and a bath ready. Then I took her temperature and woke her up. She had a fever of almost 103 and then she began to wail. I gave her the world's quickest bath to get her as clean as I could and then got her into new jammies and remade her crib (this is where it would have helped to have Ryan home). Then, I went downstairs, turned on my laptop and wrote my subplans for the next day. I finally got to bed almost 2 hours later, and of course neither kid slept in the next day.

Why am I telling you all of this? Because it sets the stage for what I am about to write next. I had originally taken Thursday off (so, yes, I had Wednesday off with sick Juliana, and Thursday off) because Juliana had a cardiologist appointment and Noah had his preschool program duirng the day. Both were at times fairly close together, so Ryan also took the day off (yes, he came back into town after the puking was over).

Ryan took Juliana to the cardiologist, and this is where the Christmas surprise comes into play. I was on my way to Noah's program with my mom, when my cell phone rang. Ryan told me that Juliana's heart no longer had any holes in it, it wasn't enlarged anymore, and they didn't see any evidence of hardening either. I cried a bit in the car. Juliana doesn't need to see the cardiologist anymore. We get to cross this doctor off her long list of doctors now (don't get me wrong, we LOVED Juliana's cardiologist, but heart problems are scary)! That is quite a Christmas present. As a bonus, Ryan and Juli even made it on time to Noah's Christmas program too, and Juli was very proud to see her brother on stage singing and dancing.

Merry Christmas!

Tripawd Heroes, Volume One...

2011-10-12T16:18:00.001-05:00

The weekend after we put the Chili Dawg to sleep, Jim and Rene announced on the Tripawds website that they were looking to put together a book about Tripawds and their stories. They were only accepting 25 entries for the first volume. You were limited to 250 words, to write about why your tripawd was a hero, and send a couple photographs of your tripawd.

Even though I had just lost the Chili Dawg, I thought I would give it a try. The hard part was cutting my writing down to only 250 words. The first draft I emailed in just talked about his cancer, and I immediately regretted that entry, because it didn't talk at all about what Chili Dawg did for me and how he changed my life. I sat down and re-wrote my entry. Jim and Rene were very understanding and kindly accepted my second entry as the actual entry.

I only told Ryan that I entered, I didn't tell anyone else, because I didn't want to be disappointed. There are a lot of amazing tripawd dogs out there with equally amazing stories to be shared. Well guess what? We made it into the book!!! It was announced to today in the forum, and if you scroll down, you will see Chili Dawg's name in there, he's the 8th name on the list! So, not only do I get to buy the book about a bunch of Tripawd Heroes, but I can say that my dog is in there too.

So Long September...

2011-09-30T22:45:00.003-05:00

I'll be honest, I'm glad September is over. It's been one month since we put the Chili Dawg to sleep. It hasn't been an easy month for me. I have been full of sadness and anger. I miss my Chili Dawg. When I had a bad day, I could count on him for a snuggle- he had the softest fur. He never stopped smiling. Even on his last day with us, when he couldn't even walk or stand up to greet us at the door, he still beat his tail on the floor, grinning, until we came over to greet him.

Chili's last day- still smiling

I've been angry that he was taken from us so soon. I know some of you are saying, "he was just a dog, get over it already", but you clearly don't understand the healing power of animals (and I'm not talking about that weird stuff you see on 900 commercials). He was special. He brought me out of my darkness. I know that God sent him to us to help free me from my depression and anger after my brain injury. I've been trying to find the joy during all of this and it hasn't been easy for me.

Here is what the Chili Dawg taught me: 1) he loved me unconditionally, just like God does, 2) you can still be beautiful when you're missing a limb, 3) live in the moment, 4) it is possible to smile & be happy through the pain.

If it wasn't for Chili Dawg's cancer, I would never have found the Tripawds website & joined "the club that no one wants to join, but everyone is glad they did". If I had not found the Tripawds website, I would never have formed the friendships that I have since formed. The people that I met have helped me through the beginning of Chili's battle with cancer and the end of Chili's battle with cancer, and I can never thank them enough. The support they have shown me this past month has been incredible- the emails, the cards, the private messages, & forum posts. I may never meet them face to face, but we are bonded through our dogs.

So while I still have a paw shaped hole in my heart, I will focus on the good memories of my Chili Dawg and try to move on. Dakota Dawg's Mom, Shari, suggested that Noah and I make a memory book so that Noah and Juliana are able to remember him when they get older. I think that is a good idea, and we will get started on that soon. So, run free, Chili Dawg. I'll catch you on the other side of the Rainbow Bridge.

Faithful friend

Appointment In Heaven...

2011-08-30T20:30:00.000-05:00

"Noah, today is Chili's appointment for doggie heaven." "But Momma, I'm going to miss him so much!" said Noah, as he began to cry. "I know, Sunshine. I'm going to miss him more than you can ever understand, but his body isn't doing good and you don't want him to hurt anymore, do you?" "No, Momma. How is he going to get to doggie heaven? By the cross like us?" "No, sweetie. He's going by the rainbow bridge." "Jesus will carry him, won't he? Because Chili Dawg can't walk anymore." "Yes, Noah. He won't be alone when he crosses the rainbow bridge."

Tonight we said good-bye to my faithful companion. His pain had become too much for him. He put on the front that he didn't hurt; kept a smile on his face and continued to wag his tail, but he couldn't really stand anymore and he could barely walk two steps before he fell. Ryan had to force feed him his pain medicine this morning, so we knew it was time. I spent part of last night laying on the floor next to him as he tried to find a comfortable position. I cried into his fur and thanked him for being a faithful companion and loving me unconditionally. There is no question in my mind that this dog was sent to me from God, and he has been a blessing to our family from the moment he arrived.

Run free and out of pain, Chili Dawg. I love you so much!

Our last weekend together

My heart is broken...

Mission: Kill Barney...

2011-08-28T13:32:00.000-05:00

I waited too long. The mission was to have the Chili Dawg "kill Barney". The first day, I let Chili and Finchy get a "taste" of Barney. Then, I dressed Barney up in a PSHS Cougars t-shirt and took him to school for some "edg-u-k-shun". See pics below (and a more detailed description here).

Then, I gave Chili the chance to "kill Barney". Normally, the Chili Dawg would have totally chewed on him- he probably wouldn't have destroyed him, but he would have squeaked him many times and rolled on him, etc. This was his response.

I already knew something was wrong. He was limping badly, which for a three-legged dog already signals a bad sign. He has been limping for about 2 weeks, but Ryan and I had hoped he had hurt himself running in the back yard or wrestling with Finchy. He's also not eating much anymore. I suspected that the cancer had returned. A visit to the vet on Friday confirmed it. The vet took x-rays of hips, and showed me a large mass in his left hip- it's basically consuming his femur and part of his pelvis. The vet asked me if Chili has cried out or yelped in pain. I said no, besides the limping and not eating (since his amputation he has gone from 83 pounds to 68 pounds) he has displayed no other signs of pain. The vet was impressed with the Chili Dawg. We were sent home with medicine to manage his pain until he lets us know that it's time to send him across the rainbow bridge. It breaks my heart. I knew it was inevitable, but I had hoped we would have longer than 3.5 months. He's my best friend, my "soul dog."

Yesterday, I gave it another shot with Barney. I wanted him to try it while he was on pain killers, before we sent Barney on to another tripawd. He showed a little more interest, but I waited to long. I should have let him do it the day Barney arrived, before he was consumed with pain. "The cough" started yesterday. "The cough" is the sign that the cancer has moved into his lungs as well. His appointment with doggie heaven (what I am telling Noah) is getting closer, and soon I will have to say goodbye to the dog who stole my heart.

While he didn't get a chance to "kill Barney", I gave Finchy the opportunity, and he let Barney have it for him and for the Chili Dawg. Good job, Finchy!

Barney...

2011-08-24T21:07:00.000-05:00

When the Chili Dawg was diagnosed with osteosarcoma (OSA) and given a short time to live, I never expected the blessing that the diagnosis has turned out to be. Naturally, I was devastated. We decided to amputate his leg to remove the pain, the cancer will return no matter what we do, but the amputation at least took away the pain. The day after Chili came home a "tripod", we noticed he was bruising. Not knowing if it was normal, I googled post-op amputation images for dogs, and a website popped up: tripawds.com. This website has been a source of strength for me in this journey with the Chili Dawg. I have formed friendships with people all over the country- our common bond being our amputee dogs. Not every dog on the website has cancer, but they all have 3 legs.

At the beginning, the community answered all of my questions: how would Chili adapt, how do I not feel guilty for not doing chemo, etc. Since then, I've been able to pass on what I have learned to new people who are experiencing the same shock that we felt when we heard the diagnosis. We are able to celebrate our "ampuversaries" together, we are heckled by the 4-legged dogs (also known as monkey-butt dogs), and we also comfort each other when there is bad news- cancer found in the lungs, or our best friend has crossed the rainbow bridge and is no longer with us.

On Monday, a package arrived on our porch. It was addressed to the Chili Dawg, from Abby. I kind of knew what was in it, but I didn't know about everything that was in it. On the tripawds website, there is a tour known as the Killbarney Tour. Jerry G. Dawg (who is no longer with us) is the dog who inspired the Killbarney Tour. His pawrents are the founders of the tripawds website. Anyway, Barney travels in a box, with an amazing journal. Everyone who has hosted Barney writes in the journal about their dog, stamps their dog's pawprint and puts in a picture of their dog. Also in the box, each person contributes something of their dog's or a momento from Barney's visit- you are supposed to remove an item and then contribute something of their own. For example, Abby's mom put in some items from Barney's visit to the San Diego Zoo.

It is amazing what treasures this box holds. It took me 2 days to go through everything, and I am still reading the journal. Some of the dogs Barney visited are no longer with us, and reading their journal entries have made me cry. It is amazing the healing that dogs bring, they are truly a blessing from God. If Chili Dawg had not gotten OSA, I would not have found this community and gotten to experience the Killbarney Tour.

The Chili Dawg has not gotten to kill Barney yet. I have taken Barney on an "educational" journey for a couple days, but soon he will get his turn, and then I will write our story in the journal and choose another deserving tripawd to send Barney on to.

All of the treasures

All of the letters that accompany Barney

The journal

12 Years Ago...

2011-08-14T01:00:00.004-05:00

Twelve years ago, I married my soulmate. There are many reasons why I love Ryan, but this year he did something very special for me that showed me how much he loved me.

Back in May we got the diagnosis that the Chili Dawg had osteosarcoma (bone cancer). If we didn't amputate his leg, he had maybe 30 days to live. He was in a lot of pain and could barely walk. The veterinary oncologist gave us our options. All of them were extremely costly. My heart was broken. Literally broken.

You're probably thinking, "He's just an animal. Why are you that attached?!?" What most of you don't understand is that Chili Dawg basically brought me back to life, and I don't mean in a resurrection sort of way. After my brain injury I fell into a horrible depression. H-O-R-R-I-B-L-E. There are 3 weeks of my life that I have no memory of whatsoever due to the brain injury. Then there are about 5 months where my memories are extremely fuzzy, also due to the brain injury. I would get confused going home, I couldn't remember my phone number. All the easy things that I used to take for granted were now difficult for me, and I became angry and depressed. Nothing worked to snap me out of the depression. No medicine, no doctors, nothing.

Then, I got an email from Ryan. Someone at his work had a friend who didn't want their golden retriever anymore, and they wanted to know if we were interested. As soon as I saw the picture, I was interested. We drove the hour and a half to look at this dog, and as soon as he greeted me, I knew that this was my dog and we weren't leaving without him. His old owners wanted nothing for him (they had paid a lot of money for him from a breeder- they gave us his papers), they just wanted him gone, so we took him home with us for free. There was something about the Chili Dawg (we changed his name) that broke through my wall of depression and freed me from it. After he came home with us, it's like my fog was lifted. My depression went away, and my anger started to as well. I still struggled with my memory, and probably will for the rest of my life, but this dog got through to me.

Fast-forward to the cancer diagnosis and my broken heart. After everything this dog had done for me, it seemed there was nothing I could do to help him. We couldn't afford the amputation, chemotherapy, radiation, or bisphophatase. Ryan was out of town, so he couldn't see my face as I read through our options and how much they cost- he was doing the same thing on his laptop in Texas. He called me to talk about what we should do. I wanted to tell him that I wanted to do the amputation, but I knew I would sound selfish, because we didn't have the money to do it, so I told him that we could just make Chili Dawg comfortable for his last month with us until the cancer moved to his lungs and we had to put him to sleep. Ryan got very quiet on the phone and then he told me he would call me back. While I waited for him to call me back, I wrapped my arms around Chili Dawg and cried into his back, apologizing for not being able to take away his pain.

The phone rang, and it was Ryan. "I scheduled Chili's amputation for next week. We need to do the amputation to take away his pain. I looked at the budget and if we cut out some spending, we should be able to afford it." Words cannot explain how much this decision meant to me. Ryan knew how much Chili Dawg meant to me, and he was willing to make sacrifices so that he could be with us for just a little longer. While I know that the amputation may have only given us a couple extra months with Chili Dawg, because the cancer will come back (even if we did chemo it would come back), I appreciate that my husband put my needs ahead of his own in making this decision.

And that is just one reason why I love this man. Happy 12 year Anniversary, Ryan!

Good-bye, Ms. Laura...

2011-08-09T03:00:00.002-05:00

A few weeks ago (July 18th to be exact), our amazing speech therapist, Laura (I've posted about her here and here), told me that she was leaving the company that she currently worked for to go to a different job, and was no longer going to do Early Intervention. Let's just say that I didn't take the news so well. I fought off the urge to punch the wall (only because my children were present) and I fought off the tears until I was alone with the Chili Dawg. Those of you who have never had a child that required services probably don't understand why I had such strong emotions. These therapists are MORE than therapists. They become like family members. So when they leave, it puts a hole in your heart. When I was done crying into the Chili Dawg (and on the phone to my mom- thanks mom, by the way), I pulled out my journal to get the "crazy" out. Oh yeah, I don't post all the crazy on here, you should see my journal.

Today, is our last session with Laura, so I thought I would post a little bit of what I wrote in my journal so that everyone could see just how special this person is to our family.

Dear Laura,
The day that Peggy told us that she was leaving the company and could no longer be Juliana's speech therapist, I was devastated. I called my mom crying. You see, she was our second speech therapist- the first one lated only 2 sessions and then said we stopped services. As you know, Peggy had helped Juliana a lot and she meant a lot to our family. Her leaving was hard for us, and so I was bound and determined NOT to let myself get attached to you. But darn you! You are just so likeable! There's something about you that is just so special. I knew it right awaay, and I knew we were in trouble, because I knew if you ever left the company while Juliana was still in EI, we were going to be devastated again. And I was right.

Today when you told me you had resigned, a part of me already knew it was coming. I had a "feeling" for a while. But I still wanted to punch the wall & I came very close to doing it- so it's good that Noah and Juli were in the room. Again I found myself on the phone crying to my mom while I had the Chili Dawg draped across me (I told you he's good therapy).

The thing about you darn therapists is that you become like family to us. Sometimes I text you more than some family members! you guys are special and whether you know it or not, you make an impact on our lives. So thank you. Thank you for everything you have done for my daughter, for my family, for me. Thank you for standing up to Dr. Fishbein and writing letters for all of our doctor visits. Thank you for checking up on Juliana when she was in the hospital in October and when she had that "seizure" in March. We won't forget you.

We love you, Laura. Thank you for blessing our lives!

Momma-Noah Date...

2011-08-03T13:18:00.000-05:00

All summer Noah has asked to go on a special "Momma-Noah" date; somewhere without Juliana. I think with a lot of our days spent around Juliana's therapies he feels like he doesn't get enough attention from me. So, I've been waiting for the timing to be right for a special date with him.

On Sunday, Ryan mentioned to me that "Kung Fu Panda 2" was at the cheap theater. Noah has wanted to see this movie since he first saw the previews before school was out. So, I put in a "call" to one of the kids' favorite babysitters to see if she or her twin sister (also a favorite of the kids) were available to watch Juliana so Noah and I could go on our date. I got lucky, and one of them was available so we set it up for Tuesday (yesterday). I didn't tell Noah where we were going, I just told him that we were going on a date.

Tuesday morning, Noah got up and made sure it was the right day for our date. Then he went and picked out his clothes for our date- he wanted to look nice, so he chose a pair of dress shorts (unheard of- the kid is all about comfy clothing like his mom) and a nice t-shirt. Then, the bugging began, "Mom, is it time for our date yet?" "Mom, when's the babysitter going to be here?" This was all by 7 in the morning.

Finally, it was time for our date. We got to the movie theater, and Noah still didn't have it figured out (we don't go to a lot of movies). Then, I bought our tickets and he got super excited. I had a gift card, so I took him up to the counter and asked him if he wanted to pick out candy or popcorn to bring into the movie, and he looked up at me and said, "Momma, I don't want any candy or popcorn (what kid turns down candy or popcorn when their Mom is offering it?!?) Could we just share a Diet Coke?" Since he never gets to drink pop, I got us a drink and we went in and sat down.

Noah LOVED the movie. He did get a little scared by the wolves in the movie and needed to hold my hand, but half way into the movie, he yelled out, "Mom, this is the best movie, can we come and see it again?!" And, he drank most of the Diet Coke himself. When the movie was over, he said, "This was the best Momma-Noah date ever. Maybe next year Juli will be old enough to come with us? Maybe Auntie Jaime, Rori, Liam and Baby Brendan can come too?" Ahhh, my sweet little man is growing up!

A Special Kid...

2011-08-01T13:51:00.000-05:00

My mouth tends to get me in trouble. Not having my filter anymore makes it even more likely that my mouth will get me in trouble. This past school year, I had a remarkable student that I want to tell you about. He said I could write this blog about him, and I promised to keep his name anonymous. Some of you may know him or have heard me talk about him. He truly is an amazing young man who has risen above his circumstances.

We had just returned back to school after having two days off after the blizzard in February. My students weren't in the mood to learn, and I was crabby with having to work extra hard with keeping them on task. Towards the end of the period, I handed out grade sheets. When I handed this young man his grade report, his face dropped a little and he made an innocent comment about how his percentage had dropped (it was still above a 100%, though). Well, it was 7th period, and like I said, I was crabby. Immediately, I said something dripping with sarcasm (I'm really good at that), and walked away. A few minutes later I looked back over and the young man was crying. Oh crap, I said in my head, this is not what I had intended. Usually after I've been sarcastic with a student, they go back to what they were doing and we are fine. I walked over and apologized for upsetting him with my words, but I still felt bad- I rarely make kids cry, and to me this did not seem like one of those instances where I would make a kid cry. I kept going over my words (of course, I don't remember them now) and they didn't seem like they were that sarcastic or hurtful.

My guilty conscience continued to plague me. I again apologized to him after class before I left for the day. I could see that something was clearly bothering him, but he wouldn't tell me. So, I tried one last ditch effort- facebook. I sent him this email:
"I just wanted to apologize again. I was just giving you a hard time, and I didn't realize that you were feeling so much stress. I won't joke around with you like that anymore in class. I realized that you don't quite get my sarcastic sense of humor and I feel badly. Anyway, I wanted to apologize again. You are one of the brightest and hardest working kids that I have ever met and you have a bright
future ahead of you. I hope you realize how smart you are. You are going to do big things with your life. I believe in you."
I received his response very quickly, and when I read it, I have to say it was quite unexpected. He told me that it wasn't me he was upset with, and it wasn't me who made him cry, that he would have cried anyway. He shared with me that right after he graduated junior high, his father murdered his mother (whoa). He now lives with his aunt who tells him every day what a horrible and selfish kid he is. She doesn't let him talk about his mother or visit the gravesite when he wants to.

Wow. That is a lot for a 15 year old kid to have to deal with. Did I mention that this kid has a 4.5 gpa on a 5.0 scale? Did I mention that this kid is one of the nicest young men that I have ever met? Did I mention that this kid has impecable manners? The day I missed school because Juliana had her seizure, I immediately got an email from him asking how she was doing.

Wait, there's more. Towards the end of the school year, his aunt's husband (his uncle) was killed in a terrible motorcycle accident. I know. How much more does he have to go through? He and I had many discussions about God after class. He knows what I believe and where I stand, but he is searching still. His aunt takes him to a church, but he feels as if he is judged there, because his aunt tells stories about him that aren't true. I explained to him that all churches are not like that.

The final blow. The last day of school, he stayed behind after everyone left. I used to let my students sign their names on my classroom wall. I didn't this year, because I was informed it was going to be painted over during the summer. He asked me if he could please write his name on the wall, so it would be like he existed somewhere. I let him do it, and then he told me that his aunt was sending him to live with his Grandma and his Grandfather (who has terminal cancer) in Florida for the summer or possibly until he turned 18. I asked him when he would find out if he was coming back. He told me his aunt told him to pack as if he was never coming back. I asked him when he was leaving. He said 2 days. He was upset because he had wanted to visit his mother's gravesite as her birthday was coming up (as was his- they are 2 days apart), and he wasn't going to have the opportunity to do so. We said goodbye, and I told him I hoped to see him on the first day of school.

Well, I just got an email from him. He won't be coming back. He told me he will be living with a cousin, and he is no longer under stress. No one is telling him that he is a bad kid anymore and no one is telling him that he is a horrible human being anymore. I hope that he continues to shine where he is now. This kid is special. He works so hard and it doesn't come easy for him. He doesn't have the best life, but he doesn't let it get to him and bring him down. He's rising above it. I'll keep praying for him, and I hope you pray for him too. I'm going to miss seeing him when school starts up again. This is one of the reasons I became a teacher, to experience something like this. Keep your chin up, anonymous, I believe in you!

"Back" to Normal...Well, almost...

2011-07-27T14:00:00.001-05:00

Last Tuesday, I woke up early for some unknown reason. So, I decided that it was a sign that it was time to test out the old hip and go for a run. I haven't run since the Warrior Dash, I've kept it just to roller blading and swimming. I went for my run, did a little over 2 miles and then came home, because I didn't want to push my luck since my hip wasn't hurting at all. I got in the shower, ate some breakfast and then watched the news, waiting for the kids to wake up. Eventually, they did, and when I got up to get them, I noticed a dull ache in my back that hadn't been there before. For the rest of the day the ache got a bit worse. Fortunately we had our weekly session at the chiropractor that afternoon. After being interrogated on whether or not I had stretched (the answer was yes) and if I had done any heavy lifting or turned weird or fallen in the shower (all no's), Dr. Rich concluded that I had definitely done a number on my low back (hooray for me). He spent a good 15 minutes adjusting me. Then he told me to ice it- no heat, and to come back on Thursday.

Wednesday morning, I woke up at 4 AM and I tried to move. The pain had gotten incredibly worse and I couldn't figure out how to get out of the bed without making it hurt more. I had felt this pain before, and I remember it well. My junior year at Bethel, I had torn my psoas muscle in my hip/back and had spent all summer recovering from that. Somehow I got myself on my stomach and slid out of bed onto my knees and crawled (literally) to the bathroom. At this point, the room was spinning and I was sweating from the pain, so I stopped and laid down on the bathroom floor, which was a bad decision, because then I had to get back up on my hands and knees. I thought about yelling for Ryan to help, but then I remembered that he could sleep through a heavy metal rock concert in our bedroom. I eventually got my business done and made it back to bed. When Ryan got up for work, I had him help me get up and get downstairs. By the time he left for work, I had figured out that standing was the best and as long as I kept an ice pack on my back and tried not to move, I could get through the day. Unfortunately, with kids, you can't be still, so that wasn't going to work. I called the chiropractor and they got me in for a morning adjustment. It was a pain filled drive to the office but the adjustment helped and I was able to stand up when I left. I was told to come back in the afternoon, and that was a smart decision on his part, because a few hours after the adjustment the pain was back in full force. I was biting my lip and cheeks with any movement and trying not to cry when I took any steps or made any type of movement.

As the week went on and I continued with my "2 a day" adjustments, my back got better. Ice packs were still my best friend, and I traveled everywhere with them. By Sunday I was feeling really good and contemplated going to the gym for a swim, but Ryan wouldn't let me saying that it probably wasn't a good idea to push myself after hurting my back so badly. Monday I felt even better, but then I had a little setback. Chili Dawg had to have surgery on his ear, and when I went to pick him up, he was still a bit loopy from the anesthetic which if you have 4 legs isn't such a big deal, but when you only have 3 legs it's a bit harder to walk. He fell a couple times leaving the vet, and I had to pick him up and get him back on his 3 legs, which irritated my back. I'm sure you're asking why didn't I send Ryan to do that? Because, Chili is my dog. I didn't get to be with him for his amputation since that doctor was much closer to Ryan's work, so I was going to make sure he knew I was there for him for this surgery. Plus, look at how pathetic he looks in this picture.

Yesterday, my back felt good. I was tired of not getting to be active, so I put the kids in the jogger, strapped on my back brace (ugh!), and put on my skates. We only did 1.2 miles, because I didn't want to hurt myself. Then, I iced my back for a while. When we saw the chiropractor that afternoon, he was pleased with how my back had done after several days of no adjustments, and even more impressed that I went roller blading. I went skating again with the kids this morning, the same distance and my back still feels decent. I still have the ache, but the sharp pains I felt on Wednesday and Thursday are now gone. I don't think I'll go for a run for quite a while, because whatever I did to my back was not quite worth it. For now I'll stick with rollerblading and swimming, it seems to be my new thing.

Finchy & Juliana...

2011-07-21T19:55:00.001-05:00

Auntie Jenny passed on some squeaky toys to Finchy and Chili Dawg recently. Ryan and I immediately labeled them as "outside" toys. Finchy has a habit of squeaking the squeaky toys over and over and over and over and over and, well you get the point. Even with the heat this week, Finchy has wanted to spend lots of time outside with his squeaky toys, so we have had to make a few exceptions with the squeakies so that he doesn't suffer from heat exhaustion. Every day for a couple hours, I let him bring one squeaky into the house and squeak it to his hearts' content until it drives me nuts and I have to send it back outside.

One of the reasons we love Finchy is because of his gentleness with our kids. Boxers are known as good family dogs, and I think the video below with Juliana will prove that as well. He's a sweet boy, even if he couldn't learn a new name when we rescued him.

Arizona Vacation...

2011-07-18T15:04:00.000-05:00

A few weeks ago we got to visit my in-laws in Arizona. We had a great time out there, and got to do a lot of fun things!

Ryan and his dad were smart. Since we flew into Phoenix, they decided that it would probably work better for the kids for us to spend the night in Phoenix before driving to Tucson. They were right- Juliana screamed for the last 30 minutes of the plane ride (it was magical). After we ate lunch, we went to the SEA Life aquarium. It was really cool! The kids loved it! It was set up kind of in a maze format so you moved from room to room, and some of the aquariums had "bubbles" so that you could stick your head up into the fish tank and look in on the fish. One of the rooms allowed you to put your hands in the tanks and touch anemones, starfish, sea cucumbers. I wasn't sure if Juliana would do it, with her sensory issues, but she put her hands and arms all the way into the tank and didn't want to leave that room. The favorite room for the kids was this HUGE fishbowl and swimming in the fishbowl were all sorts of stingrays that would splash the water. You could view them from up high, and crawl into a bubble and look into the tank- that was Noah's favorite part.

After we left the aquarium, we went to the Squaw Peak Resort to check in. Fortunately, all of Ryan's traveling had paid off and we stayed there on some of his Hilton Points (I finally found an upside for him being out of town). We quickly got the kids into their swimsuits and sunscreened them up, and then met Grandma, Grandpa, and Auntie Diane and went to the pool. I seriously think that if Noah was a dog he would be a Portuguese Water Dog, because that kid loves the water! The kids finally crashed (they did really well, since we had to get them up at 4 AM to go to the airport) and we got them dinner and put them to bed before Ryan and I crashed. We were sure they would get up early the next day, but we were wrong- they were tired! Noah slept 13 hours and Juliana slept 15.5 hours! Wow! After breakfast, we spent the rest of the morning at the pool before we checked out and made the drive to Tucson.

One of the things Noah told Grandpa that he wanted to do while we were there was to "run up a mountain". So, Grandpa found us a smaller mountain that he thought Noah could hike up. We didn't end up running up the mountain, but Noah hiked his way all the way to the top! We only had to stop once, because his shoe came off when his foot got stuck, but he walked all the way with very little help from me. Juliana tried to walk, but Ryan ended up carrying her most of the way up. She tried to walk down too, but I ended up carrying her down (Ryan had the easier job on the way up). One thing we did learn on this day, was that Juliana still overheats very quickly, so this was about all time she could be outside for when it's really hot.

We also visited the International Wildlife Museum, which was pretty cool too. It had animals from all over the world. The kids liked it alot. One of their favorite parts was this tunnel that let them pretend they were ferrets and they crawled through it multiple times. Juliana's favorite was walking under the giraffe. Noah's favorite was the Gila Monster- at Grandma and Grandpa's, there was a lizard that Noah named Coco and would leave water out- it wasn't a Gila Monster, but that's Noah's favorite lizard now. That night Grandpa broke out the Karaoke machine and Noah and Juliana "sang" to us on the microphone and danced for us as well.

One of my favorite places to visit when we are in Tucson is the Desert Museum. Since we learned early on that Juliana overheats quickly, we kept her "cool" by soaking her shirt in the icy cold water fountains that they have throughout the museum. I also would take her hat and fill it up with water and dump it on her head. This way we were able to see more of the museum without her "melting" and we didn't have to worry about her body temperature rising quickly. She wouldn't even shudder when we put the icy cold shirt back on her. The kids really liked the museum, especially the hummingbird habitat, the raccoon (because he ran right up to them), the squirrel (because again he ran right up to them), and the cave.

Another part of the Desert Museum that the kids really liked was the digging for fossils area. I think Noah could have spent the rest of the day there with Grandpa just digging in the sand for the hidden fossils, but after uncovering 3 of them, we had to move on- it was getting close to lunch and if you know Ryan, you know how he gets when he's hungry.

As we left the Desert Museum, Auntie Diane surprised the kids with Prickly Pear Punch. It was this pretty pink color. Both kids LOVED it, and Noah is still talking about how he drank it and how it comes from a cactus. The flight home from Phoenix was a bit more magical than the flight to Phoenix with Juliana screaming for about AN HOUR after the MEAN stewardess FORCED me to buckle her into her seat when she was mostly asleep in my lap because we hit turbulence. If she had just listened to me and let me continue to hold the mostly sleeping child, everyone would have had a much more peaceful flight, but I'm just a mom, so what would I know?

Forgetting about the plane rides, we had an awesome time out west! Thank you Grandma, Grandpa and Auntie for showing us such a nice time! We love you and miss you!

Warrior Dash 2011...

2011-06-20T20:56:00.003-05:00

Back in December, Ryan, myself, my sister Jaime, brother in law Bill, and his brother, Todd, all signed up for the Warrior Dash in Channahon. Jaime, Ryan, and I started getting "serious" about it around February/March with our workouts. Towards the end of March, my hip started to bother me after I would run, but I didn't give it much thought and just started taking glucosamine supplements. At the end of April, I mentioned it to my chiropractor, and he took some x-rays.

Here's how our conversation went: "Your x-rays show that you have early onset hip degeneration in your right hip. Basically it's a form of arthritis, and if you don't stop running it's going to get worse." Me: "Yeah, I'm 34 years old, how can I have hip degeneration?" "Your right leg is shorter then your left (nice, I'm a gimp) so when you run, your gait is putting more strain on your right hip. Even if we give you a lift to put in your shoe, it won't be enough to make up the difference in length." "Well, I can't stop running yet. I'm doing the Warrior Dash in June, and I'm not missing that!" "Well you need to find other ways to train like swimming or biking that don't put that repetitive stress on your hip."

Needless to say, I was not pleased with the results of my x-ray, and there was no way I was going to give up doing the Warrior Dash. So, I continued to train and run, but the pain in my hip got worse, and soon I wasn't able to do more than a 1.5 miles before the pain and tears would force me to stop & hobble home. I figured my chiropractor was right, I needed to find a new way to train, so I began to swim and rollerblade and then once school ended I started pushing the kids in the jogger while I rollerbladed.

That brings us to Warrior Dash Saturday. I woke up extremely excited for the day. I taped my ankles up (yeah, I taped my ankles- I blew one of them playing roller hockey when I was a college freshman & it was a smart decision too), and put on my knee brace. My parents arrived to watch Noah and Juliana, and then Jaime, Bill, Todd and his wife, Mary Lou (who is 7 months pregnant) arrived. We took our pre-dash picture and got in the van and drove to Channahon.

While we waited in the long line of cars to get to the parking lot, we watched the people who were currently "dashing". We saw that some people were walking, and wondered why (later we discovered why). Excitement in the car built, and finally we were parked. We grabbed our gear bags and walked in to register. Then, we took our pre-race picture, and jumped in to the 10:30 wave (we were registered for the 11:00 wave, but they didn't care).

The first part of the race started with no obstacles, and had some hills, mud and a bit of water. We were doing well and passing people. My hip was actually feeling good and only hurt a small bit. We got to the spot where we had wondered why people were walking, it was a hill covered in mud. I had read that a tip was to stay on the outside of the trail, so Jaime and I were doing that, when my footing gave way and I bit it HARD. I landed hard on my right hip and knee and I wanted to cry as this intense pain shot through my leg. Jaime was able to step over me so that I didn't take her out with me. I scrambled back up and we got up the hill, but I was basically done running at that point. I managed to do a pathetic jog here and there, but I was the group's handicap for the remainder of the dash. I'm sure Ryan and Bill would have liked to have run on ahead, but they were nice and stayed with me (Jaime and I had made a pact to stay together no matter what- that's what sister's do).

Stick together, that's what sisters do!

The obstacles weren't too bad, although they required a lot of upper body strength which I didn't think I possessed, but I surprised myself and did. We did learn that my T-Rex arms did slow me at climbing (have you ever looked at a T-Rex? They have really short arms- well, so do I- Ryan is always making fun of me for them), but I was still able to do it. My sister was a BEAST and overcame her fear of heights. She really scaled those obstacles quickly, and I'm so proud of her!

The last part of the dash involved jumping over fire and then jumping into a giant vat of mud and "swimming" through it under barbed wire. I think that was my favorite part. After you climbed out of the mud you were given a medal and were greeted with a table full of cups of water and bananas (which is why I have one in the picture below- I was hungry!).

Once we took our "mud" picture, we headed to the water truck where we were "hosed" down by a fire hose with ICE COLD water. I'm talking FREEZING cold water. It was so cold, it took your breath away. I don't know how he did it, but Ryan emerged from the cluster of muddy people virtually clean, as you can see in the picture below, and he was the muddiest of us all.

The whole reason we did it, the hats of course!

I'm not going to lie, I was sore the next day, and my right leg is an array of various bumps and bruises and there is skin missing in places. Will I do this again? In a heart beat! We are all doing this next year, and are planning to dress as superheroes. We are also recruiting for next year, and we may be coming for you (yes, Dennis, that means you).

Toothless...

2011-06-08T13:46:00.001-05:00

No, I'm not talking about the dragon from the movie, "How To Train Your Dragon". I am talking about my two year old daughter and her latest activity. On Saturday, I was at the Wilton Tent Sale with my sister and 2 friends and my cell phone went off. It was Ryan. "Juliana faceplanted in the grass and her mouth is bleeding. I pushed her lip down and her gum is torn a bit. I think she is okay. What should I do?" In the background I can hear Juliana screaming. Now, Juliana is not your typical child. She fell down the steps (all the way from the top to the ceramic tile at the bottom) and did not cry. When she falls and skins her knees outside, she doesn't even whimper. My response, "Call the dentist and see what they want you to do." 10 minutes later my phone goes off again, and Ryan tells me that he and Juliana are on their way to Lombard, because our dentist is closed this weekend but the Lombard office is open and they want to see her.

The next time I hear from Ryan, he is calling because they are on their way home. "One of her bottom teeth is very loose. The dentist wanted to pull it right then, but because they couldn't get ahold of her cardiologist to see if she needed to be pre-treated they couldn't pull it." "So what are they going to do?" "They are sending us home with a prescription for antibiotics to start today and she can only eat soft foods. On Monday we have to call and get her into the normal office so they can re-evaluate her and have time to talk to her cardiologist."

So, today was the first day they were able to get us in. I was able to leave Noah with Theresa, and she told me to bring his swim stuff since it's so hot out. Dr. Chung looked in Juliana's mouth and noted that the tooth had stabilized a tiny bit and said that we could continue the soft food diet for a few more weeks and then re-evaluate again or we could just pull it today and be done with it. I made the decision to pull it, because since we started the soft food diet, Juliana has barely eaten anything, and we've been pulling out the "big guns" to bribe her to eat: ice cream, pudding, yogurt, milk shakes, but she has wanted nothing to do with it and instead has wanted to eat the "forbidden" food. I weighed her this morning and she was already down in weight, so even though I didn't want to pull one of her teeth, I didn't want to go through another few weeks of her not eating when it's hard enough to get her to want to eat.

They brought us back into a room and closed the doors so that her screaming wouldn't be as loud to the other patients. I got into the chair with her and she knew something was up and began to whimper a bit. I started praying hard. First they needed to numb her, so they had me lay back and wrap my legs around her legs and my arms around her to restrain her. Then a tech held her head down while Dr. Chung numbed her. Juliana screamed through that. Then we had to let that kick in a little bit, and Juliana settled down. Then, Dr. Chung came back in. I resumed my position, and Juliana started to scream again. It didn't take long to remove her tooth, and as soon as they were done Juliana stopped screaming. I think it was more traumatic for me than it was for her (since it seems like I'm always the one doing the restraining). Dr. Chung said that this won't affect anything, she will just have a gap there until her adult tooth comes in several years from now (all this from falling in the grass!).

After we picked up Noah, he made sure to let me know that I need to put Juliana's tooth somewhere so the Tooth Fairy will find it and bring Juli something special. What a day! But Juliana came through it like a champ. I'm so proud of her!

Juli's tooth! This big thing came out of her mouth! Nasty, eh?

Heart Of A Lion...

2011-06-03T11:08:00.000-05:00

It takes a special person to work in special education. I couldn't do it. I have known a lot of awesome special education teachers, Emily, the Heathers, Rhonda, etc. Last year was my first year teaching REI Chemistry (REI stands for Regular Education Initiative), and I met my collaborative special ed teacher, Lisa.

Lisa is a tiny lady with a big voice, an infectious laugh, and the heart of a lion. You always know where she is because you can hear her coming down the hallway if she's yelling or if she's laughing. Lisa is a no-nonsense lady who doesn't take anything from any of the kids, but once they break through her outer shell, they see that she is just a teddy bear inside (hee hee). She has several black belts and almost made the Olympic team when she was younger- how cool is that?!?

Lisa helps me stay sane, and sometimes our classes think we are nuts (sometimes they think we are the devil as well). No matter what they think, I couldn't teach my REI classes without her help. We feed off of each other and when one of us is having a bad day we carry each other. This year was a tough year for both of us, emotionally and physically. I know that if I didn't have her support, I would have crumbled halfway through the school year.

Last week we invited Lisa over for dinner (her husband was out of town or we would have invited him as well). Juliana LOVED her! Ryan and I have never seen her eat so well, and we think that it had something to do with our dinner guest. We grilled burgers for dinner, and Juliana sat across from Lisa. First she ate her part of Noah's burger. Then Ryan cut her some more of Noah's burger and she finished that. Then, she ate the rest of Noah's burger that he didn't finish!- Unheard of. At bedtime, she gave Lisa a big hug, which she doesn't usually do to people she meets the first time. While she was going to bed, Noah put Lisa to work helping him peel stickers to decorate a paper he was making. Noah wants to know when she's going to come back over and help him with his art projects.

So, thank you, Lisa, for all that you do. I look forward to working with you for many more years!

Lisa refused to let me take her picture so I had to get it while she was coming out of another classroom (I know, almost stalker-like)

Preschool Graduate...

2011-06-01T10:44:00.000-05:00

Noah graduated preschool a few weeks ago. One of the nice things about him going to the preschool at my high school is that I was able to sneak in during his graduation ceremony and see part of it. During my 5th period class, I have a co-taught class and when my co-teacher isn't there, I have a TA in with me, Adam. Adam told me to stay as long as I wanted at Noah's ceremony.

I walked into the classroom, and I was sure Noah saw me. Then his teacher thanked all the parents for coming, and Noah said, "My momma isn't here. She had to work." His teacher told him that I was right behind him, and I was able to capture part of the look on Noah's face when he started to turn around to look for me.

Then, the high schoolers started to call their names for them to receive their "diplomas". I got that on video on my camera (not very high quality, but I didn't want to bring my nice camera to school). If you watch the bottom corner of the screen, there's a little boy who falls off his chair right as Noah goes up to get his diploma- kind of funny (the kid wasn't hurt, so it's okay to laugh).

As a special present, Noah's teacher made each preschooler a scrapbook of pictures of their 10 weeks with the Advanced Child Development kids. It was really sweet and Noah shows his to everyone who comes over to our house. My little boy is growing up!

One Of The Best Feelings...

2011-05-24T19:32:00.000-05:00

Around 2 o'clock this morning, I woke up for no reason. The Chili Dawg had some how gotten up on our bed again. This time, he was curled up next to Ryan and his "cone of shame" was gone (I found it on his dog bed). Ryan woke up too (unheard of, by the way) and told Chili to get off the bed. Clearly, Chili is feeling better post-amputation, because he gave Ryan a look like, "you're kidding, right?" and crawled over him to get to me. He immediately assumed our snuggle position for when Ryan is out of town with his head on my shoulder and let me pet his soft fur until I fell back to sleep- one of the best feelings in the world.

Conversations With Noah...

2011-05-19T19:55:00.002-05:00

Yesterday we were driving to a doctor's appointment and Noah proceeded to ask, "Momma, when is it Noah's Mother's Day?" "Well, first you have to be a Mom to have a Mother's Day." "Well, when is it Noah's Father's Day?" "First you have to be a Daddy to have a Father's Day." "How do I become a Daddy?" "Well, first you have to get a lot bigger and older. Then you need to find a nice girl and get married. Then you need to have a baby. Then you will become a Daddy." "When I have a baby I know what I'm going to name him. It's the best name I know." "What is the name?" "Jesus. Isn't it the best name, Momma?" "Yes, Noah."

After we left the doctor's office, Noah asked, "Momma, where am I going to live when I'm a Daddy with baby Jesus?" "You're going to live in your house with your baby and your wife." There was a silence. I tilted my mirror and saw that he was about to cry. "What's wrong, Noah?" "I don't want to live in a different house with my wife and Jesus. I want to live with you and Daddy in my room." "Well, where are your wife and baby going to live? I don't think they will want to live with us." "My wife can live with her mommy and daddy at her house and Jesus can sleep with Juli in her room!" "What if Juli doesn't want to share her room with Jesus because he's a baby and she's a big girl now?" "Well, Momma, she's small and she will want to snuggle with Jesus! Please don't make me live somewhere else!" "Sweetie, you can live with us as long as you want." "Thanks, Momma."

Chili Dawg Update...

2011-05-16T08:57:00.000-05:00

Chili Dawg came home on Thursday night. It was a hard night for him and for me. Ryan brought him home around 5:30, just as I was finishing getting the kids' dinner ready. Ryan needed help getting Chili out of the back seat of his car- Chili was heavily sedated and didn't want to move. I grabbed a chicken nugget and helped lure him out of the back seat. Chili gave a yelp of pain, but we were able to get him up and get a towel underneath his body as a sling and get him in the house. We got him onto his dog bed. I showed the kids where they could pet him and where they could not pet him. Noah immediately sat next to him and started stroking his back. Juliana was terrified and literally tried to climb back inside of me. When I picked her up, I noticed that we had irritated one of Chili's staples and he had blood running down his side.

Normally, I can handle anything, but I wasn't prepared for what the scar and staples were going to look like. Combined with the blood, not sleeping and not eating because I was worried, I got light headed and started to sweat. I had to sit on the floor for a little while until the world stopped spinning. Once that was done, I was ready to take care of my dog.

The first night, Chili slept on the main floor. There was no way we were going to allow him to climb all the steps up to our bedroom. Around 11 o'clock, I awoke to Finchy whining on my side of the bed and I heard Chili barking downstairs. Finch and I went downstairs. Chili had gone into the kitchen and couldn't figure out how to turn around with the cone on his head. I got him turned around and back on his dog bed. Then I went upstairs and got my pillow and spent the rest of the night on the couch. Every 2 hours Chili would get up and whine trying to find a more comfortable position. I would help him adjust and then go back to sleep. It was a long night.

I am happy to say that that was the only night like that. Chili refused to sleep downstairs the past few nights. He takes the steps like a champ, and now goes down the steps too (the first morning, Ryan had to carry him down, because he was afraid, but he has conquered that fear). Juliana is no longer afraid of him as well. She gives him hugs and pets him as well. Noah is still a gentle heart and gives him a hug and kiss every time we leave the house. You can tell that Chili feels better too, because he greets you at the door when you come home and his tail is wagging- 2 weeks ago he didn't do that.

I'm posting a picture of Chili, but it won't be an up close one of his amputation- for those, you can go to his blog that I have started (I haven't had time to make it anything nice yet, though). He is still beautiful, just in a different way now.

4 days post amputation

Amputation...

2011-05-10T20:18:00.000-05:00

Tomorrow is the Chili Dawg's amputation. I am nervous and scared for him. He's in a lot of pain right now, but he tries not to show it- I think it's the nature of the Golden Retriever. He keeps a smile on his face almost all the time, but you can see when he's walking on three legs that he hurts. He moans and cries in his sleep. He has stopped eating. The past few days, I have sat on the floor and hand fed him because the oncologist told us that he needs to be strong for the amputation.

I have been reading up on dog amputation, and he should adapt well to life on three legs- he already is using just three. He also will no longer have pain from the bone cancer so he should be back to his normal self fairly quickly. We have also been preparing Noah for what will be happening to Chili. I had to pull up some video on YouTube of three legged golden retrievers so that he could see that they could walk and run and play, because as soon as I told him that Chili was going to have a leg removed he burst into tears afraid that Chili wouldn't be able to move around. Every day he asks me the same questions making sure that Chili will be able to walk and run.

The Chili Dawg is my special friend. My crying blanket. I hope that our decision was the best decision for him and will not cause him any extra pain.

Chili's Last Weekend With Four Legs

Happy Birthday, Jaimers!

2011-05-05T01:47:00.001-05:00

Today is my sister, Jaime's, birthday! Jaime and I are 13 months apart, which meant that I always had a playmate growing up, as well as someone to fight with- oh wait, we never fought, did we, Jaime? NEVER! Jaime is one of the coolest mom's on the planet to three of the most beautiful children on the planet (and I'm not just saying that because I'm the aunt- I'm really saying it because Rori Rose still owes me a bracelet- kidding!).

Jaime and I have been through a lot in her 33 years on this earth (wow, Jaime, you're getting old), and there is no one I would rather have by my side then her. Happy birthday, Jaimers!

Back in the day when I was the taller sister

Osteosarcoma...

2011-05-04T11:00:00.000-05:00

Monday, as we were driving home from Juliana's 2 year check up, my cell phone rang. It was Ryan. "The vet called about Chili." "I'm not home yet, so don't tell me the results." Now, I don't know if Ryan heard me since his phone was crackling, but he then proceeded to say, "I don't really have anything new to tell you. We just have to decide what treatment we want to do." "So it's cancer for sure then?" "Yes, and it's in the ulna which is rare. They are recommending amputation and chemotherapy which combined could get him to a year. 6 months if we only amputate." I started to hyperventilate (which is why I didn't want him to tell me until I got home) and told him I couldn't talk right now. I pulled to the side of the road because I thought I was going to throw up. I started crying, hysterically and hitting the steering wheel with my hand. As I was about to yell the "f-word", I heard, "Mom? Why are you crying?" from the back seat. I realized that I still had my kids in the car, and if I had started to swear, I'm sure that would have been a word they both would have picked up (wouldn't that have been an interesting conversation with Juliana's speech therapist- "Juliana said f*** today. Where do you think she heard that?). I settled myself down and drove the rest of the way home, still crying, but no longer in hysterics.

My special boy, my best friend, has terminal bone cancer and is in pain. None of the options will cure him. What do you do? Amputation will remove the pain for the remainder of his life until the cancer moves to his lungs and he's already only walking on 3 legs. Radiation will control the pain but will weaken the bone making him susceptible to a broken leg and is more expensive than amputation. Chemotherapy will kill the cancer but it will come back and may buy him a year and is the most expensive of all the options.

If I were to be totally selfish & we had an unlimited supply of money, I would choose amputation and chemotherapy to keep Chili with me as long as possible, but that is only thinking of myself and not him or my family. I have done so much crying over this decision I am exhausted. Every night I lay on the floor with him at bedtime and tell him how sorry I am and what a good dog and friend he has been to me. If you're not a dog lover you probably think I am nuts, but if you've ever met the Chili Dawg you'd understand.

Ryan and I have done a lot of talking about this. Last night he called me and said, "Chili's amputation has been scheduled for next Wednesday. I want him to have no pain for the time that we have left with him." Me, too. Thank you, Ryan, for helping us make the decision.

My heart is broken.

Happy Birthday, Juliana!

2011-04-28T03:04:00.000-05:00

Today, my little girl turns 2. Wow. It has been a year. She has come so far since her last birthday! On her first birthday, Juliana couldn't sit up on her own, she couldn't roll over on her own, she wasn't pulling up, she didn't have any words, and she had just qualified for Early Intervention.

Now, on her second birthday, she climbs, she walks, she runs, she has about 15 words or pieces of words, and has been discharged from the physical therapy portion of Early Intervention. I'd say that is cause for celebration!

Juliana you are one stubborn little girl. I think your stubborness is one of the reasons that you have been able to accomplish things that you shouldn't be able to given your caloric intake. You give me and your daddy (and sometimes your therapists) a run for our money every day! You have your daddy and your grandpa wrapped around your finger, and I'll add Ms Theresa in there too.

You can be a bully one minute and a charming little princess the next. You love your brother and love to terrorize him at the same time. You love to dance, and whenever you hear TobyMac's song, "Tonight" come on, you immediately begin to dance, even in the car.

You love animals, especially Finchy and Auntie Jaime's dog Igor. Your favorite parent is your daddy, but every once in a while you will choose me. You love to look at books, especially touch and feel books.

Juliana, we love you so much! You have come so far in a year, and we are so proud of you and all you have accomplished! Happy birthday, baby girl!

Dancing to "Tonight"

Miss Suzy...

2011-04-27T19:17:00.000-05:00

Meet Miss Suzy. Suzy is Juliana's Occupational Therapist. Our first OT was Ms. Connie, and we loved her to death, but she had to leave us unexpectedly and Miss Suzy took her place in October. Suzy works with Juliana on her fine motor skills, sensory issues, and moving from task to task. She definitely works hard (all our therapists do- have I mentioned that Juliana is stubborn?).

Juliana loves Suzy and is excited when she comes to the house. As soon as Suzy enters, Juliana immediately begins to point at Suzy's giant bag of "toys" because she wants to play. With Suzy's help, Juliana has started to use a pincer grasp really well with her right hand, she's still developing it with her left. She can use a spoon fairly well and is starting to be able to use a fork. She now holds her bottle or sippy cup (yes, she still drinks out of a bottle- don't judge me until you try to feed her yourself) by herself. She tolerates bouncing on a pilates ball- she used to scream if she was seated on it for even a moment, she didn't like being bounced on it or rocked on it. She is also just beginning to use her left hand- most of the time it just stays at her side.

Suzy was also the therapist who was with me the day I had to call 911, and I will be forever grateful that she was in the house with me. She helped me to stay calm and keep my head even though I wanted to cry and scream and freak out because my daughter wasn't breathing.

So, thank you Suzy, for all that you have done for Juliana, especially for being there on that very scary day that is burned into my mind forever.

Miss Meghan...

2011-04-26T19:40:00.000-05:00

Meet Miss Meghan. She recently discharged Juliana from Physical Therapy, but before she did that, she worked wonders with our little girl. When we met Miss Meghan, Juliana was almost one year old. Juliana could not sit up on her own (you had to sit her up), she couldn't roll over on her own, she wasn't crawling, pulling up, or doing any of the "normal" things that a typical one year old child does.

The first few sessions with Meghan involved lots of crying by Juliana. Meghan made Juliana work hard and she didn't like it at first. Meghan would put weights (we called them "pretty bracelets") around Juliana's legs and make her stand up, go up and down the stairs, or crawl on the floor, and Juliana didn't like it one bit at first. She would scream and scream the entire time. Meghan usually saved that part for the end, but it paid off. Juliana is now walking and running.

Learning to stand up last August while popping bubbles

Juliana and Noah loved Meghan. Both would wait at the front door for her. Meghan always let Noah participate in Juliana's session, and Noah appreciated that a lot. At Christmas time Meghan bought both kids Christmas presents. Now that's generosity!

When Meghan was doing Juliana's re-eval, I knew she was going to say that Juliana did not qualify for Early Intervention. It made me happy and sad at the same time. Happy, because that meant that Juliana had caught up- she only has a 20% delay now. Sad, because in that year we spent with Meghan, she became like a family member and now we don't get to see her anymore.

Thank you for everything, Meghan. We love and miss you.

Meghan's last session with Juliana

Numb...

2011-04-26T08:53:00.000-05:00

We decided to take the Chili Dawg back to the vet yesterday because his limp was getting worse. We thought maybe he had broken something or torn something. Neither of us were expecting what we were told.

I was reading Noah his last story when Ryan came home with Chili. He came upstairs and I could tell by the look on his face that it wasn't good. I finished the story and looked at Ryan. "The vet is pretty sure it's bone cancer. It's in his leg. We have to take him to an oncologist to confirm it with a biopsy. It hasn't spread to his lungs yet. There is a very small chance it could be a cyst but it's highly unlikely." "How long?" "Probably 6-8 months."

I felt my dinner starting to come up and I had to leave the room. I heard Noah ask, "What's wrong with Momma?" I made it to the bathroom and vomited. When I came out, Chili was laying on the floor of our room and I buried my head in his fur and cried and cried.

I spent the evening crying and holding the Chili Dawg while Ryan researched the cancer. It looks like amputation may be the best route, but we will have to wait and see what the oncologist says, especially since it will only alleviate his pain.

I am not ready to part with my Chili Dawg yet and am still numb from the news. It doesn't seem fair. If you're not an animal person you obviously won't understand. Don't tell me he's just a dog because you won't like my response.

Ms. Laura...

2011-04-25T18:01:00.000-05:00

My daughter turns 2 years old this week. As we get closer to her birthday, I wanted to introduce you to some important people in her/our lives. The first one is Laura. Laura is Juliana's speech/feeding therapist. She replaced Peggy (who we still love and keep in contact with). We have been working with Laura for almost a year now.

Laura sees Juliana twice a week and it is with Laura's help that we are starting to hear more "words" from Juliana. Laura is one of the most patient people that I know, which is a good match since Juliana is so stubborn. Last week I got a text message from Laura that went something like this: "Am giving J a break. Was able to get her to verbalize "all done" and "more" 5 times after practically standing on my head". I had to laugh, because that is what you have to do sometimes when you are working with Juliana.

Laura goes above and beyond her job as Juliana's speech therapist. Back in October when Juliana was admitted at Children's, she called to check on us and texted me often to check in on Juilana. While we were in the ER when Juliana had her "seizure", when I finally got service, I had several texts from Laura checking on Juliana and us- she even offered to get Noah for us. The next day she called to check on all of us to make sure we were doing okay as well.

These are just some of the reasons why we love Laura. In addition to the above reasons, Laura & Peggy were able to get Juliana past her feeding aversion. She now eats age appropriate foods. Now our only problem is getting her to eat enough bites before she refuses to eat anymore (oh, if only I had that problem).

So thank you, Laura, for all your hard work.

To Know Or Not To Know...

2011-04-21T11:04:00.000-05:00

Do I really want to know? This is the question that I have been wrestling with for the past week and a half. It has made me cranky, irritable, emotional, & it has been interfering with my sleep.

What is it that I'm not sure if I want to know? Tomorrow morning, we're going to load the kids in the car and drive down to Children's Memorial. From there we are going to walk to the geneticist's office.

Geneticist. Genes. I was fascinated with this when I was in college, and I enjoy teaching about it, but now it's going to apply to real life, our life.

Do I want to know what, if any, disorders we have passed onto our daughter and son? Thinking about it makes me want to throw up. On the other hand, what if this gives us answers as to why our daughter doesn't like to eat and isn't growing?

I am torn. Do I want to know or do I not want to know? Good question.

The Chili Dawg...

2011-04-18T19:50:00.000-05:00

Back in 2003, we had to put our first dog, Goliath to sleep. I'm pretty sure that Goliath is now sitting on Satan's lap helping him rule Hell. A co-worker of Ryan's knew of a family who had a Golden Retriever that they didn't want anymore and were giving him away for free. Ryan emailed me a picture of him and I said "yes" immediately, so Ryan set up a meeting. I fell in love with Chipper (who names a dog that?) as soon as I saw him. I had been going through a bad bout of depression following my brain injury, and this dog brought me out of it.

We changed his name to Chili Dawg, and got him fixed up at the vet (he had all sorts of infections going on). Every day I'd take him for long walks and just pet him. Chili thinks he's a lap dog, and he will climb right up into your lap, lay his head on your chest with the rest of his body spanning the length of yours. He knows he's a beautiful dog, and if he were a human, he'd have an entourage of people to follow him around telling him that and grooming him. One of his favorite things to do is to sit with his face in the wind and let it blow his fur. He also likes to lay on his back when he sleeps, it's the funniest thing. He has helped me through a lot. He knows when I'm upset and just need something to cry into at night. He lets Juliana use him as a step to climb up, and I'm sure it hurts his arthritis but he has never growled or snapped at her. Both kids went through the hair, ears, and tail pulling stages and he put up with it. He's a good and faithful dog.

Well, it's 2011, and my best friend is getting old. His muzzle is grey. He has arthritis and walks with a limp. He has a hard time climbing up into your lap nowadays but he still makes an effort. He still greets me and the kids at the door everyday with a wagging tail when we get home. He still sits with his face in the wind, being beautiful. He doesn't wrestle with his Boxer brother as much anymore, and he has slowed down when he's running in the back yard. He's still my crying blanket, even more so these past couple years as the stresses have added up. I know that eventually he will no longer be with us, but I hope that day is long in coming because I don't know what I would do without him. People say that they're just animals, but I don't think they understand that some animals can change your life.

A Boy and His Dinosaur...

2011-04-10T13:50:00.000-05:00

Noah has a special stuffed animal. A stegosaurus to be exact. His name is Steggy- Noah named him (his real name is Morris Stegosaurus from Dinosaur Train, but try telling Noah that and see where it gets you). Steggy goes everywhere with Noah, day care, church, swim lessons, doctor's appointments, preschool, etc.

Thursday night everything that could go wrong did. Ryan's car barely got him home from work before it broke down. Then, Juliana projectiled at the dinner table for the first time in about a month (everyone still remembered the clean up drill though, so that was good). As I was getting ready to wash Juliana's hair, I noticed something and said, "Noah, why did you bring Steggy into the bathtub?" Noah immediately realized his mistake- Steggy is a stuffed animal and not a bathtub toy and started to cry. I told him it was going to be alright. I took Steggy to the sink and started to ring him out, but he was really wet. I looked at his tag, and it said do not put in dryer- who makes a kiddie toy that you can't put in the dryer?!? I put Steggy in front of a fan and turned the fan on high in hopes that Steggy would be dry by Noah's bed time.

I finished their baths and got them into their pj's. Noah went and stood by the fan and told Steggy how sorry he was that he got him wet and that it would be okay. Since Ryan was out at the car parts store, I was going to put Juliana to bed and I could see that Noah was worried about Steggy, so I tried to distract him with a tv show, but that didn't work; he wanted to stay with Steggy.

At Noah's bedtime, I read him his stories and then it came time to get into bed. He asked me for Steggy. Steggy was still pretty wet, so Noah laid a blanket down next to his bed for Steggy to sleep on. He climbed into his bed and I started to cover him up. He was trying so hard to be brave, but I could hear him whimpering. I went into the closet and grabbed 2 of Noah's old baby blankets and wrapped Steggy in them. Then I handed Steggy to Noah who grabbed him and tucked him under his blankets. "Thanks Mom! You're the best Mom ever!" And they fell asleep, just a boy and his dinosaur.

Things Taken For Granted...

2011-04-04T19:56:00.001-05:00

I know you're not supposed to compare your children, and I realized that pretty quickly on after having Juliana. Juliana and Noah are very different. Noah was an easy baby. He loved to eat, was fairly easy going, content, and once he learned to talk it was "word vomit". Juliana has been one trial after another, and I wouldn't trade her for anything. She has taught us perserverance and she has most definitely strengthened my daily prayer life.

There are days at work when I grow tired of hearing, "Mrs. Mahlberg...", "Hey, Mahlberg...", "Mrs. M...", etc. Some days I even say, "she's not here right now, but if you leave a message after the beep, she'll be happy to get back to you. Beep." My students look at me like I'm crazy, but most of them leave me a message after the beep. There have even been times when I have gotten tired of Noah saying, "Mom" or "Hey Mom". Let me clarify that one and say that it's when it's the whiney "mom" days.

Last week while I was reading through Juliana's EI paperwork, I started thinking of the different words that she says (she has about 12 words in her arsenal). The two words that she uses the most right now are "up" and "doggie". Then I got to thinking, when was the last time she called me Momma? I can't remember. It has to be well over a month ago. When was the last time she called Ryan, Daddy? I can't remember that either.

There's nothing I would love more than to hear the word Momma come out of my daughter's mouth. For the rest of the week and weekend, I kept asking her to say Momma. If you know Juliana, though, you know that that's not how she operates. She did give Ryan a Daddy on Sunday for the first time in weeks though, and I think I heard a Momma today in the van, or at least that's what I'm telling myself I heard.

Take a lesson from me, don't take it for granted when your kiddos call you Momma or Daddy. You never know when you will get to hear it again.

Spring Break 2011...

2011-04-03T14:45:00.000-05:00

Spring break flew by this year, and we were sure busy! If you looked at my calendar (some of my friends at work caught a glimpse) you would have seen that every day had at least 1-2 appointments scheduled. While it was busy week, it was still nice to enjoy a week off with my kids. I'm going to give you a little glimpse into what we did last week...

Monday: We started the morning off with a trip to the post office to mail our favorite girl Holly her birthday present, and on the way home stopped off at the library to pick up some Curious George books for Noah. After we got home, Juliana had her visit with Laura, her amazing speech therapist. Later that day, Juliana had her visit with Meghan, her equally amazing physical therapist. It was then that we were given the news that Meghan would be discharging Juliana from Early Intervention, because her delay was not great enough. Ryan and I had seen that coming, and this was great news to hear, but bittersweet at the same time. When you work with the same therapists for almost a year, they become like family members (but I will save that post for another time).

Mrs. Laura

Miss Meghan

Tuesday: Juliana and I started out with our drive downtown to the Rehabilitation Institute of Chicago, which is on the campus of Northwestern University. It's not a tough drive for me to do alone, although the GPS did want me to turn left on a street with "no left turns" allowed. Nevertheless, we got there. However, when I had looked at the time on my calendar, I had looked at the time for our Wednesday appointment which was for 9 AM. Our appointment was at 10 AM, we were an hour and a half early. Fortunately the floor our doctor is on has a children's play area, and Juliana was happy playing there and flirting with the man behind the desk. Our appointment with Dr. Gaebler went well (I really like her) and she is going to do some digging to hopefully help us get some answers to Juliana's "seizure/non-seizure" last month. We then ended the day with our appointment with our chiropractor.

Playing at the RIC

Wednesday: I hadn't slept well, and I had a birthday coffee coupon (free medium coffee) from Dunkin Donuts, so once the kids woke up, we went through the drive-thru and got myself a coffee, Noah a sprinkle donut, and Juliana 2 munchkins. 1 of my former students was working the window, and refused to take payment for the donuts, which was kind of cool. Then, Juliana had her Developmental Therapy evaluation. I was slightly cocky about this one. Since she didn't qualify for DT last year when she was evaluated, I figured she wouldn't qualify this year. Yeah, that's what happens when you get cocky. Fortunately, the areas she has her delays in are being treated with speech therapy, so we don't have to add in another therapy. From there, we went to do Noah's 4 year check up with Dr. Russell. It went really well. Noah weighed in at a whopping 33 lbs 7 oz, so he won't be moving to a booster seat in the car for a while, and he's 40 inches tall. Juliana was a bit confused when we were there because she is so used to being the center of attention at the doctor's that she didn't understand why she wasn't being examined. Then we played outside all afternoon.

Dr. Russell

Thursday: We spent the morning and part of the afternoon up at Jaime's. The kids liked that they got to spend time with their cousins and meet Jaime & Bill's new dog, Igor. Then, we had to leave, because it was time for Juliana's Early Intervention meeting. Juliana's meeting went well. Juliana qualified for everything except for Physical Therapy, but Meghan suggested that she be re-evaluated in three months since she is at risk of falling behind again. It took about an hour to go through everyone's evaluation and set the new goals, but this time I knew what to expect- last time it was hard to hear everything that she had a delay in- it depressed me for days.

Miss Suzy holding conference with Laura and Meghan

Friday: This was our low-key day. We only had one thing on the calendar- lunch with Ryan and Uncle Jeff. We drove up to Ryan's work, picked him up, and met up with Uncle Jeff at this yummy Greek restaurant. There was so much food left that we were able to bring home the leftovers to eat for Saturday's lunch.

Juliana's first gyro

Lunch with Daddy and Uncle Jeff

So that is just a glimpse into our spring break activities. We were busy, but we had fun too.

A Happy Birthday Message From Noah...

2011-03-30T13:02:00.000-05:00

Dear Holly,

Here is a special message just for you on your birthday. I miss you so much and I love you.

Love,

Noah (& Juliana too)

P.S. At the end of the video, Juliana put her mouth on the camera trying to kiss you.

Grandpa, This Tantrum Is For You...

2011-03-25T06:26:00.000-05:00

Juliana has started throwing tantrums if she doesn't get her way. It's magical. Grandpa Jim (my dad), who Juliana has wrapped around her finger, doesn't believe that she could ever do anything like that.

This is from this past Wednesday. I'll set the stage. Juliana didn't want to leave Theresa's when I picked them up after school. On the 3 minute drive home she proceeded to scream, and then something hit me in the back of the head. I said, "What was that?" Noah answered, "Sister's shoe." Juliana had taken her shoe off, and thrown it. I realize the accuracy of a 22 month old is not good, so the fact that it hit me in the back of my head is pretty amazing.

When we got home, I told her she was going to go into time out after I took her coat off. This was what I got. Notice she only has one shoe on.

During this episode, Noah and I went upstairs until the screaming was done. When she stopped screaming, her coat was off, and she was sitting in time out.

Then, she wanted some animal crackers when she was done in time out. Unfortuantely, I didn't put them in the right container. This is what I got. Again, notice the shoes.

Noah and I again went upstairs until she was done screaming and re-seated in time out.

So, Grandpa, what do you think now? Is that enough proof?

It Is What It Is...

2011-03-19T14:19:00.001-05:00

I hate the saying, "it is what it is". What does that even mean? Even though I can't stand it when people say it, I have found that I have been saying it a lot this month. I don't know if it's because I'm frustrated again or if I'm giving up or if I've just resigned myself into a form of acceptance.

This month started off with the call to 911 and a trip to the ER. I still close my eyes and see Juliana purple and limp, not moving at all. It makes it hard to fall asleep. We followed up with our pediatrician like we were told to and he told us what to do in the even that she had any more febrile seizures. This week we followed up with her neurologist at Children's. He's not sure that she had a febrile seizure. In fact, he's not sure what happened to her that caused her to turn purple and stop breathing. Great. I wasn't happy about Juliana having febrile seizures, but at least we had a diagnosis, something to work with. Now we are back to square one, the unknown. Yay.

We ended the week with a visit to Juliana's GI doc at Children's. I already knew he wouldn't be pleased with her weight. Her neurologist showed us all her weights plotted out on her chart, and so I already knew what was coming. Her weight is plateauing again. She weighed in at 20 lbs 8 oz. In 3 months she's gained less than a pound. I tried to make the case that she has had a cold for the past few weeks, but that didn't really do much for the doctor. He's increasing the dosage on her appetite stimulant, and I have to get her evaluated by a therapist from his feeding clinic. Yay, more appointments, and this one may turn into a weekly one, so tack that on to the rest of her therapies. Juliana's GI doc thinks that she gets "fatigued" in the mouth and that's where her poor weight gain stems from. Ryan and I disagree (we have watched her chew on ice cube after ice cube after ice cube), but since this is one of the last things on his list of oral/motor problems, we are going to humor him so that he will rule it out and move on.

Normally after these disappointing visits, I get angry and discouraged, but yesterday when Laura (our speech therapist) called to get our concerns for Juliana's annual Early Intervention meeting and asked how I was doing after the doctor's appointment, my response was to shrug and say, "it is what it is". What is that about?

Never Been So Scared...

2011-03-04T07:51:00.000-06:00

Yesterday, Noah and I were sitting in his room playing a Veggie Tales matching game on my laptop while Juliana was downstairs with Suzy, her Occupational Therapist. All of a sudden Suzy yelled my name. I ran downstairs and Suzy was bent over Juliana. Juliana had thrown up an orange liquid. I knelt on the floor next to her and started to tell her everything was okay, when she started to make a strange gargling noise. Her face started to turn purple and Noah began to cry and ask why his sister was turning that color. We thought she was choking on something, but she hadn't had anything to eat. I called 911 while Suzy started the Heimlich manuever. While I was on the phone, I tried to get my finger in Juliana's mouth to see if there was anything in there that she was choking on when her jaws clamped down on my finger, she began to foam at the mouth and shake. I was able to prop Juliana up and Suzy got her airway open a little bit but she was very purple, very purple. 2 policemen ran into our house and put Juliana on her back, tried to get into her mouth but they couldn't do it either. Then the ambulance, fire truck, and 4 more police cars arrived. The paramedics ran into the house. Juliana was still purple but she was limp at this point. The paramedic picked her up and ran her to the ambulance to work on her. Suzy told me she would stay with Noah and I ran out the door to the ambulance where I was bombarded with questions. I was shaking and bordering on tears but I was trying to keep calm for Noah because he kept asking "what's wrong with my sister?" I couldn't remember what medicines she was on or the doses. They had me come back into the house to get Juliana's medical history, and they were asking Suzy about what she was doing with Juliana. Then the paramedic came back in and said that she was stable but had a fever of 102 so they were going to take her to St. Joes immediately and I could follow with Noah when I was done with the policemen.

When I was done answering all the policemen's questions, they gave me directions to St. Joes because I didn't know how to get there. I grabbed my wallet, keys, cell phone, and Noah. I called Ryan and told him to meet us there and gave him directions as well. Then I called my dad and let him know what happened and called my brother in law and let him know what happened. I made myself be calm for Noah on the drive to the hospital. Noah kept saying, "I hope Juli is okay, Momma." I told him that we needed to pray for Juliana, so we prayed the whole way to the hospital.

Ryan arrived at the hospital at the same time as us. I filled him in on what happened, since I didn't really let him know what had happened. When we got to the children's ER, we found Juliana alert, with a cup of apple juice, a stuffed bunny, and sitting on an orderly's lap. "This is not what she looked like when the paramedics left" I said half crying. They took us to a room and we saw a doctor and gave him her medical history. Because she had a fall a couple days ago they wanted to do a chest x-ray and a CT scan along with blood work and urineanalysis. Juliana was in good spirits for most of this, until they got to the IV. She screamed and screamed. Then she wanted to be held by me.

I held her, and then they came to get us for the x-ray and CT scan. During the x-ray, I had to put on a lead coat and while Juliana was strapped into a baby chair screaming, I had to hold her arms out of the way. During the CT scan while Juliana was strapped down screaming, I had to put on a lead coat and hold her head still. It was horrible. Then we had to wait and wait. Noah was getting antsy. It was almost 8 pm, he was tired and hungry and worried. Juliana was getting antsy. Ryan let her walk the hallway and rolled her IV behind her. Then, the doors opened and there were Frampa and Framma! They had driven down to get Noah and bring him home for us. All of us were happy to see them.

Noah, my mom and Ryan went home (Noah didn't want to leave without a parent) and my dad stayed with Juliana and I. It was a little after 9 when the doctor came and told us that all of her tests were normal and all of her scans were normal and that we were going to be sent home once the paperwork was done and Juliana's IV was taken out (Juliana was asleep at this point). He said that Juliana had a febrile seizure and she could have them now anytime she runs a fever until she is 4-6 years old so we need to have tylenol or ibuprofen on hand. He also told us to follow up with our pediatrician and neurologist.

I have never been so scared in my life. I don't think I even slept last night. I am so very thankful that Suzy was with me to help me get Juliana's airway open. I am very thankful that 911 responded so quickly. I am thankful that God helped me to remain calm in front of Noah. I am thankful that my parents came down. I am thankful that my little girl is alive.

Happy Birthday, Noah!

2011-03-03T05:24:00.000-06:00

My baby boy turns four years old today. Boy has time flown by! I remember the day I had him. It was a Saturday and my parents were going to come down to help us get organized, since Noah wasn't supposed to arrive for another 3 weeks. Ryan and I were both sick and miserable. I had a bad case of bronchitis and Ryan had a really bad cold. I started bleeding that morning and the doctor on call told me to come in and get "checked out". When we got to the hospital I was having contractions but I wasn't feeling them. According to the monitor they were pretty regular, so they had us walk the hallway and drink water for an hour. Then the doctor checked me. He told me that he was going to send me and I breathed a sigh of relief (being so sick there was no way I wanted to go through labor when I could barely breathe). He winked at Ryan, took out the little hook on a stick and broke my water. "I thought you said I could go home!" I yelled. "Well, I was kidding, you're going to deliver today," and then he walked out. I looked at Ryan in disbelief and got on the phone to call my parents. Less than 12 hours later, I was holding a beautiful baby boy in my arms.

If you have ever met Noah, you know why I call him my "Ray of Sunshine". It's rare for him not to be smiling or happy. He's like a breath of fresh air when he comes into the room. Noah loves to read Bible stories and pray. We were at a birthday party recently and all the kids were eating except Noah. When I asked him why he wasn't eating his pizza, he told me no one had prayed yet. We just spent the last two weeks reading the same story about Joseph and his coat of many colors and his dream interpretations at bedtime. When Noah hears a Bible story that he likes, we read it so many times that Noah can tell you the story himself (we read the story of Noah for almost the entire month of January). Now he is into the story of Moses.

Noah is an excellent big brother to Juliana. There have been times when I have come into the room to find the two of them sitting together looking at books and Noah pointing out pictures or making sounds of animals for her. Sometimes he hides the two of them under a blanket and I have to "find" them. The two of them especially like to play "house" or "tea party" in Chili's dog crate (he's a big dog, so it's a big crate with lots of room, but I don't take pictures of that because I'm sure they'd be misinterpreted somehow). One of my favorite moments are when we are at the store and Juliana insists on walking because Noah is walking, and then Juliana insists on holding Noah's hand and he lets her.

Noah has been very resilient this past year with everything that has gone on with Juliana. There have been many times when I have had to leave him with a sitter to take Juliana to a specialist and he never put up a fuss or anything. There have also been times when I couldn't find a sitter and had to bring him with me to the lengthy appointments and he held up as well as you could expect a 3 year old to. He understands that Juliana has therapists and he knows their names and even what days of the week they come on, so if for some reason our schedule gets changed and I don't tell him, he will ask, "But Momma, sister has therapy today. We need to go home."

Noah is a huge "momma's boy" and I know that it won't last forever, so I will treasure it for as long as it lasts. I love when he asks if I will snuggle him- on the rare occasion that he wants to sit still. I love that when I drop him off at Theresa's house he insists on giving me 5 goodbye kisses and telling me to "be good at school" and that he'll "miss me at school". Happy Birthday, Noah! Your Daddy and I love you so very much!

A Scary Morning...

2011-03-01T19:02:00.000-06:00

There are days when I wish I could rewind and redo events. This morning Juliana was trying to get to the blocks in the corner and she fell. Normally when she falls she never cries. Never. She fell down the steps because the gate wasn't shut (don't even get me started on who forgot to shut that gate) and she didn't cry. This time she cried. I picked her up and she laid her head on my shoulder and stopped crying, so I thought she was fine. I put her down and started herding everyone to the door to get on our coats. I looked at Juliana and there was a blood running down her head, face, and onto her shirt. I remained surprisingly calm and ran her up to the bathroom so that I could clean her head and figure out where the blood was coming from. She sat on the sink and let me wash the side of her head with soap and water, clean it with some peroxide and put neosporin on it.

Then came time for the band-aid. We have 3 types of band-aids: princess, shrek, and toy story. Juliana picked the princess box. When I opened the box, it was empty, which is odd, because the box is pretty new. Then I remembered that Noah likes to carry around boxes of band-aids and "distribute" them around the house. That's when I yelled at Noah for hiding the band-aids around the house while his sister is bleeding from the head. I regretted the words as soon as they left my mouth. Noah's face instantly crumbled and he began to cry and tell Juliana how sorry he was that she couldn't have a princess band-aid. I put a Shrek band-aid on Juliana's head, changed her clothes and put her down. She immediately ran off looking for some more mischief to get into (I found her trying to climb up Noah's bookshelf trying to get a stuffed animal).

I took her clothing to the laundry room to soak them before the blood dried, and passed by Noah's room. Noah was sitting in his room all by himself. I knew what I needed to do. I went and apologized to him for yelling at him. I explained to him that I didn't mean to yell at him I was just upset about Juliana's head and all the blood scared me. He gave me a hug and kiss and told me it was okay. Then he took my hand and said, "c'mon Momma, we need to get going." When did my little boy turn into a big boy?

First Day of Preschool...

2011-02-19T14:17:00.000-06:00

This past week Noah started at "Little Cougar Preschool", and no they aren't teaching him to date younger people. The advanced child development class at my high school is doing a 10 week preschool for $75, which is a pretty good deal. It's 3 days a week (Wednesday-Friday) for two hours. Theresa said she wouldn't mind dropping Noah off and picking him up, so Ryan and I signed him up.

Noah started on Wednesday, and Ryan took the day off so he could take him for his first day. They made pancakes for breakfast and Noah ate four of them. Then Noah began to pick out his outfit. He wanted to wear something "special" for his first day. Ryan had to talk him out of his Winnie the Pooh halloween costume. He settled on a Halloween turtleneck and sweatpants. Ryan got to walk him all the way to his classroom and then he stayed for 10 minutes to make sure Noah was doing fine and then he went home until it was time to pick him back up.

When I got home from school, I was immediately bombarded by Noah with shouts of, "Look what I made at school!" He had a good time. He even brought home part of his snack to share with his sister. His favorite part of school is when they do arts and crafts.

I have several of the advanced child development students in my anatomy classes this year, and they tell me that Noah is one of the best behaved kids and that he listens to directions really well. One of Noah's favorite "teachers" this week was one of my students named, Candace (I think one of the reasons he likes her is because he can remember her name since it's the same as his Auntie Candise's). During game time, Candace had to sit in the middle of the circle and Noah didn't want her to be alone so he got up out of the circle and sat next to her. My little boy is growing up!

My Husband The Bargain Shopper...

2011-02-06T20:13:00.000-06:00

When I was pregnant with Juliana we never anticipated her medical issues. Who would? When it was time to move her from the uber-concentrated formula (concentrated to make it higher in calories) to whole milk, we were told that we wouldn't be transitioning her to whole milk. Instead, we would be transitioning her to a high calorie drink. Going along with a high calorie drink is a high price as well. Insurance won't cover it because it's not her primary food source, so since Juliana doesn't have an N-G tube or a G-tube they won't cover any of the cost for her drink. To order it through a pharmacy like Walgreens or Target, it would cost us around $65 + $18 for shipping for a case of 27 juice box size 8 ounce drinks. On a good day, Juliana will drink 2.5 of them, sometimes 3 (if it's the first week of her appetite stimulant). Needless to say, this has been costly, and last year we had not budgted for this. This year we did.

Anyone who knows our family, knows that I lovingly refer to Ryan as "Hitler of the Wallet". Ryan holds us to a tight budget, and it is good that he does, especially when things like high calorie drinks fall into our laps unexpectedly. Ryan had the idea of searching for Juliana's beverage on eBay, and fortunately we have been able to find it there and buy it cheaper than through a pharmacy. In fact, Ryan won one of the recent auctions for $20! I can't tell you how much that excited the two of us, especially since we are trying to find money to send Noah to preschool in the fall. Most auctions don't end that cheaply, but we can usually get a case for $40. I'm sure some of you are probably thinking that we are nuts for paying that much for a kid's drink, but what else are we supposed to do to get pounds on Juliana? We will do what we have to do and we know that God will provide.

Morning Dance Routine...

2011-02-01T20:30:00.000-06:00

Noah is not a morning child. During the summer time this isn't a big deal, but during the school year when I am trying to get all of us out of the house on time it becomes an issue. Lately every morning has been a fight to get Noah out of bed, dressed and out the door. Last week I started thinking of ways to get him moving and out the door. Noah and Juliana like to dance, so now before we leave the house, I turn on Noah's "Pump It Up" song (Tobymac's song, "Tonight") nice and loud, and Juliana and Noah get their dance on before we leave the house. Here's what it looked like today (before the blizzard- that's why they are wearing boots). Enjoy!

Night Time Stirrings...

2011-01-25T08:42:00.000-06:00

At one o'clock Sunday morning a strange beeping noise woke me up. I sat straight up in bed and tried to figure out where it was coming from. "Why is Noah's baby monitor beeping?" Ryan asked. "I don't know. Is it not plugged in all the way so the battery is dying?" I responded. Ryan checked the receiver and everything was fine, but it still continued to beep. "Maybe the plug came loose in Noah's room. I'll sneak in and check. Go back to sleep." I said. I found my glasses and went to Noah's room.

I crept into Noah's room and immediately saw that the light on his monitor was turned off. I walked over to his dresser to turn it on and my shin hit an open drawer. I bit my lip so that I didn't yell out, because I didn't want to wake Noah up. I thought it was odd that the drawer was open, since that wasn't how the room was when we put Noah to bed. I shut the drawer, turned his monitor back on, and turned to walk out of the room. All of a sudden, my little ray of sunshine's head popped up, "MOMMA! I had a bad dream and I peed in my bed!" He started to cry. I told him it was okay. I found the light switch, which my smart husband had installed as a dimmer switch, and turned it on very low. Everything started to make sense.

Noah was in his bed in just his pajama top and underwear. On the floor next to his bed were his wet underwear and pajama bottoms. Next to the dresser drawer were a pair of sweat pants. In the dark, Noah had been able to find himself new underwear to change into, but not new pajama bottoms. While he had been moving things around in his dresser he had bumped the cord of his monitor which caused it to come unplugged. Had this not happened, his monitor would not have beeped and I would never have known he had a bad dream and an accident.

I calmed him down and got him some new pajama bottoms. He said he had to go to the bathroom so I took him to the bathroom. Ryan came in and stripped down Noah's bed while we were out of the room. Fortunately, Noah has a trundle bed, so Ryan pulled that out and had it ready for us when we got back into the room. Noah was terrified of whatever he had dreamed about, and didn't want me to leave the room, so I laid in his bed with him for two hours until he finally fell asleep. As I settled back into my own bed, Juliana began to cry, and I got up to feed her. Eventually, it was my turn to go back to sleep. While some people may say that this part of parenthood is not fun, I disagree. I will gladly get up in the night with my children as long as they need me.

January 15, 2004...

2011-01-15T13:37:00.000-06:00

The first few years after my brain injury robbed me of the ability to make memories. However, there are certain dates and events that I made sure I would remember. This one is too important and too meaningful to forget.

My sister, Jaime, is my best friend. She is super-mom to my beautiful neice (and my mini-me) Rori Rose, my wild-haired nephew Liam (and Noah's special wrestling buddy), and my chubba-bubba nephew Brendan (Juliana's favorite boy to bully).

Before Rori, Liam, and Brendan, there was Faith. Faith was born at 19 1/2 weeks into Jesus' arms, where she is healthy and free of pain. I remember the day like it was yesterday, and the pain that went with it. At the time, I didn't know how any of us would move on, but even though there are still holes in all of our hearts, we know that one day we will see her again.

The other day one of my co-workers caught a glimpse of one of my tattoo's and asked me about it. I explained that the symbol meant Faith, for my niece who is waiting for us in Heaven, and then explained how the Bible verse underneath it (Psalm 139:16) gave me peace.

Happy Birthday, Faith! We all look forward to the day when we are all together again!

Sleepless Nights...

2011-01-13T11:06:00.001-06:00

Ryan and I finally figured out why I haven't been sleeping well the past few weeks. We figured it out two nights ago when I woke up screaming that there were bugs crawling all over me and Ryan literally had to wrestle me back down onto the bed (I was standing on the bed trying to get them off of me) and convince me that there were no bugs in our bedroom. It's the increase in the dosage of my migraine medicine. I haven't been on this dose in several years, but the last time I was, I would have vivid nightmares like this where Ryan would have to wrestle his screaming wife back into bed and convince her that there were no bugs, snakes, spiders, etc crawling all over her. If you've ever read the book "Go Ask Alice", this is how I imagine her bad LSD trip starting out.

Now, you're probably saying, you said it's been a few weeks that you haven't been sleeping well, but you just started having the crazy bug nightmares a few days ago, how is that related? Well, I'll tell you. This time, my nightmares didn't start with bugs. They started with Juliana and her heart. I have been having vividly detailed nightmares of Juliana being in open heart surgery, with me watching from above, and then having the surgeon look up at me and shake his head, meaning she died. I wake up sweating, run to the bathroom and throw up (usually), and then go and check on Juliana. The weird thing is that I stopped worrying about her heart back in the summer and gave that to God.

Hopefully I'll never have the heart surgery nightmare again (I'd also like the bug one to stop, but I'll take it over the heart surgery one), because today we received good news about Juliana's heart. All 3 holes are closed, yay! Her left ventricle is still enlarged and the cardiologist is going to continue to monitor that, but yay for good news!

Nurse Noah...

2011-01-13T08:20:00.000-06:00

On Sunday, I hit the wall with exhaustion. I collapsed on the couch. Noah took over and told me he was my "noise" (it took Ryan and I a little bit to figure out he was saying nurse- sometimes Noah has a Jersey accent when he says certain words). He covered me with three blankets. He put his hand on my forehead and kissed it and told me to just rest- all the things that I do for him when he doesn't feel well. Then he told Ryan to make me some soup and came back to snuggle with me. It was really nice, everyone should have their own "Noise" Noah.

Peace...

2011-01-01T21:08:00.000-06:00

Around 5:20 this morning I heard Juliana's cry on the baby monitor. After figuring out where I was (on the pull-out bed in my parent's family room), I ran up the stairs, grabbed her bottle out of the fridge and ran down the hallway to the office where she was sleeping in the pack in play. She drank about 4 ounces and rubbed her eyes. I put her back in the pack in play and smiled to myself that it was still early enough that she would fall back to sleep and I would be able to grab a few more hours of sleep. As I closed the door behind me, I heard her begin to cry again. Now, if we were at home, I would have let her "cry it out", but since she was in the room right next to my parents, I didn't think that was the nice thing to do. I went back in and picked her up. She immediately snuggled onto my chest and put her head on my shoulder. I settled into the office chair, but I realized that Juliana wasn't going to let me leave her in the room alone. At 5:40, I brought Juliana back down to the family room with me. I climbed back into bed and Juliana snuggled back onto my chest with her head right below my chin and a handful of my hair clenched in her fist.

We laid like that for an hour, and that my friends, is peace.

Parents Of The Year...NOT!

2010-12-22T08:46:00.000-06:00

Yesterday Ryan and I did something we swore we would never do to Juliana. My words from November came back to haunt me, "Just put it in her drink, she'll drink it". Confused? I'll set the stage for you.

Yesterday we were back at Children's Memorial for the second attempt at Juliana's gastric emptying study. This time they were going to put the radioactive isotope in 2 ounces of her drink and then were going to try to get an additional 2 ounces of drink in her after that. Juliana had not eaten since 12:30 AM, so she should have been hungry at 7:30 AM. She took 2 sips of the drink, shuddered and was done. Ryan and I looked at each other. We did not want to have to go through this for a third time. Then Ryan had an idea, "I wonder if they have syringes, and we could trick her into taking it like her appetite stimulant." We asked for some syringes and they filled up several with the 2 ounces of radioactive liquids. Ryan tried to give it to Juliana, but she was too smart and refused to open her mouth. She began to struggle. I took her from Ryan, cradled her in my arms, pinning her arms and legs down. She opened her mouth and began to scream. Screams that I haven't heard from her in a year. Her mouth was open so Ryan took the opportunity and squirted 2 milliliters of liquid into her mouth. She swallowed and screamed. I wanted to cry with her, but instead I bit the inside of my lip until it bled.

We swore we would never force feed Juliana and here we were, forcing her to eat so that we could do a damn test. We continued the pattern- scream and squirt 1-2 mL's into her mouth. After what seemed like forever, Ryan was done. He had gotten all 2 ounces down her throat. I turned her to comfort her and she pushed away from me, reaching instead for Ryan. She wanted nothing to do with me. Then it came time for them to "take pictures" of her insides. They velcroed her down to a board and she began to scream again. They pushed the board into a machine and then three of us had to restrain her arms and legs so that she was still for the minute it took for the machine to capture a picture of her insides. We did this every 15 minutes for the first hour, and then every half hour for then second hour, and still Juliana wanted nothing to do with me. It broke my heart that she was so angry with me.

I cannot even begin to say how horrible Ryan and I feel for what we did to Juliana yesterday. Don't even say that we did what we had to do for the test and for our daughter, because did we really need the test done? Honestly, did we? I'm pretty sure that they're going to find nothing wrong. We realize that she won't remember that I held her down while Ryan forced liquids into her, but we will remember. We can still hear her screaming. Last night after the kids went to bed, we just collapsed onto the couch and were thankful that we are not alcoholics, because after a day like that we would have gotten drunk.

Happy Birthday, Ryan!

2010-12-19T00:01:00.002-06:00

When I was pregnant with Noah, Ryan turned 30. On that same day, his Grandmother whom he loved dearly, went to be with Jesus. Ever since then, Ryan has not liked his birthday. Noah loves to celebrate birthdays and sing the birthday song. He has been eagerly waiting for Ryan's birthday, and Ryan has been trying to get excited for Noah, which is one of the things I love about Ryan.

Happy Birthday, Ryan! You are an excellent father to our children and a great husband to me. We love you so very much!

Running To Your Arms...

2010-12-18T02:20:00.001-06:00

For the past few weeks, this song has been going through my head.

The beginning lyrics say, "You are good, You are good, when there's nothing good in me..." Right now there is nothing good in me. I had thought I had reached the bottom a few months ago, but I was wrong. I am drowning, sinking, and there is nothing I can do except cling to the knowledge that God is in control, and for a control freak like me, that is not something that I like.

Last night we saw Dr. Fishbein about Juliana. She is now at 19 lbs 12 oz, and will most likely meet my and Ryan's goal of 20 lbs by 20 months (insert a hell yeah here) so that we can finally change her to a forward facing car seat and get her out of that ridiculous infant seat that she came home from the hospital in as a baby. Dr. Fishbein told us that after we do the stomach emptying study (yes, we still have to do that after the first fiasco) he doesn't have anything else up his sleeve as to why Juliana doesn't like to eat/won't gain weight unless on an appetite stimulant, which is a bit disheartening. He is also interested in hearing what the geneticist says when we see that doctor next year, and he hadn't gotten any of the lab results from any of the genetic testing they had done when we were in the hospital back in October.

So, at the end of 2010, here we stand, with still no answers. Don't get me wrong, I realize that in the past year Juliana has made some huge gains, and I am very proud of all she has accomplished. I'm just saying that the past 19.5 months of her life has taken a toll on her momma and her daddy. We are mentally and physically worn out. I am hoping that this 2 week break from school will help me to recharge for 2011 and all the appointments, therapies, and new doctors that we are scheduled to see.

A Good Visit...

2010-12-14T20:25:00.000-06:00

I have been a patient of Dr. Merle Diamond's for over 18 years. That means that for over half of my life I have been going to the Diamond Headache Clinic. I was my parent's version of Juliana. When I was 15, I started having headaches, but they weren't the normal "pop a couple Tylenol and feel better" kind of headaches. When I had these headaches (we didn't know they were migraines at the time), I had to be in the dark with low sound. My head felt like it would explode. My parents dragged me to all sorts of doctors trying to figure out what was wrong with me- chiropractures, accupuncturists, neurologists, psychologists, etc. Finally, someone mentioned the Diamond Headache Clinic (if only the internet had been as accessible back then, it would have made it easier to find help).

Ever since I started seeing her, Dr. Merle has always included me in on decision making for my medical care. When I had a grand mal seizure from an allergic reaction and had to go on seizure medication for a year, she understood that I didn't like being on the medicine and got me off of it as soon as possible. When I went away to college, she gave me her home email address so I could email her anytime I was having migraine problems or had medicine questions. When I had my brain injury, she's the doctor who got the ball rolling on all of my tests. With Juliana, I've emailed her my questions or asked for her opinion and she's always been honest with me. She's even given us some names of doctors that may be able to help us get a diagnosis.

Today I had a "checkup" appointment with Dr. Merle. Ryan took the day off and drove me downtown (sometimes I get injections that render me a bit useless- and I had a feeling that I would be getting one of those today). As usual, we heard Merle before we saw her, which always strikes me as funny because you are in a place that deals with migraines. Her first question was about Juliana, and we discussed everything that we have been through. Then she asked me about my migraines, and while my gut instinct was to lie and say they weren't too bad, I knew she would see right through it, so I came clean and told the truth- that some days are worse than others. That I have a headache every day, and a migraine at least 3 times a week minimum. We discussed if it was stress related or if it was seasonal related (winter has always been my bad time) and agreed that it was probably a combination of both. Then it came time for "negotiations". She wanted me to go back on a specific medicine that I don't like. I refused. She tried to convince me to go back on it, if only for a month, because it does help my migraines and she doesn't want me in pain. I refused, but then I gave her my reasons: it makes my mind fuzzy, it makes me groggy all day, I can't wake up at night and since Juliana gets up once or twice a night to eat I could fall down the stairs and get hurt, it makes my hair fall out and I gain weight. The great thing about Merle is that if you make a good case for yourself, she respects your decision and doesn't push the issue. We came to a compromise, and changed the doseage of a different medicine, and she gave me a shot to help with the migraine that I have been dealing with since Saturday.

This is how the medical profession should work. This is how a doctor/patient relationship should be. This is an example of an excellent doctor. I love this lady, she is the best!

It's The Little Things...

2010-12-08T11:13:00.002-06:00

Yesterday I had a really bad day. I'm talking BAD. Unfortunately, I can't go into it, but I'll give you a general idea. I received a threatening email. I did receive an apology, but it definitely started my day off on the wrong foot.

Two things helped to turn my day around. The first one was that when I brought the email to the school administration, I received their full support and they stepped in. The second one was that two of my students (a brother and sister) stopped at McDonald's on their way to school (they were coming in late due to a doctor's appointment) and bought me an iced coffee because they remembered me saying that since I don't sleep much I've become addicted to McDonald's sugar-free vanilla iced coffee.

Sometimes it's the little things.

Encouragement...

2010-12-03T10:46:00.000-06:00

This week basically sucked. The Children's Memorial episode really upset me. I still can't talk about it without getting really angry, so I just don't discuss it. Juliana's therapies this week haven't gone that well. She hasn't really cooperated, and that can be frustrating. Yesterday she did have a good session for Occupational Therapy, which was good, she usually cries during that one. Last night after OT we met with a nutritionist from Early Intervention. It went how I expected: it was confirmed that we present Juliana a variety of foods, she just doesn't eat enough of them- she takes a couple bites and is done. We met with the nutritionist for well over an hour. When I looked at the clock it was 6:10. We still hadn't eaten dinner, it was almost Juliana's bedtime, and I had wanted to go to Mom Connection which started at 6:45 and it was looking like I wouldn't make it.

We whipped up a quick dinner and ate it. I texted a friend to see if she was going to go- I was going to use that as my decision of whether or not I was going to go. She texted back that she wasn't going, so I told Ryan I would just stay home since it was already 6:30. My husband, sensing that I really needed to go, said, "No, you're going. You know other people there besides Sandy. She's not even at your table. You need to go. I've got the kids covered." So, I went. I got there late, but I still got there.

The discussion last night was about encouragement, something everyone could use. The cool thing was, before OT yesterday, I had received a card in the mail from Sarah encouraging me. After the week I had had, the card made my week. I'm glad I went last night. It was nice to laugh, have fun, and not think about life in general.

Today, when I checked my mailbox at school, I had a large envelope from Western Illinois University. I almost didn't open it. Usually it's information about graduate school programs, and I don't want to go back to school. I carried it up with me to the Science office and put it down on my desk. After I opened the envelope, I pulled out a letter and a certificate. The letter was from the president of the university. The first paragraph started with: "I consider it a distinct honor to notify you that an incoming student at Western Illinois University, in an anonymous survey, has named you as her or his most inspirational teacher." Wow! Even if this is a mixup, it totally made my day, and if it's not a mixup, it's nice to know that I made a difference in someone's life.

A Perfect Day Brought To Us By Children's Memorial...

2010-11-30T15:15:00.001-06:00

A few posts ago, I wrote about how I had finally been able to schedule Juliana's gastric emptying study. It was scheduled for this morning at 8 AM. I should have known it was going to go badly when I scheduled it. I had asked if there were any special instructions. I was told "no". So I said, "oh, so we can feed her before hand?" To which I was told, "Oh, no. She can't have anything to eat 6 hours before the test". I responded, "Hmmm, that sounds like special instructions to me".

Last night, I set my alarm for 1:45 AM so that I could feed Juliana in the middle of the night. Ever since she was put on the appetite stimulant, she has returned to getting up in the night once or twice to eat. My alarm went off, I got up and fed her a bottle (yes, my 19 month old is still on a bottle- walk a day in my shoes before you judge me). She drank about 5 ounces and then fell back to sleep. At 5:10, Ryan woke me up and told me he was done in the shower and it was my turn. I showered and got dressed and then got the rest of our stuff ready to leave for Children's. At 5:45 Ryan went up and got Juliana and we said good bye to Grandma Vicki (who spent the night so she could watch Noah for us) and left.

We arrived at about 7:15- we were supposed to be there no later than 7:45. When we checked in a the front desk, the receptionist sent us to the wrong floor (second clue that the test was going to go badly). We were redirected back to the correct floor and checked in with the radiology department who immediately fell in love with Juliana. By 7:30 we were back in the room that had been reserved for us for the next 4 hours. The radiologist went through the testing schedule with us and then came the part where they talked about the delivery of the isotope.

"Does Juliana eat solids?" "Yes. Just not a large quantity." "We usually put the isotope in eggs and have them eat the eggs. Will she eat eggs?" "It would be better to put the isotope in her drink, because we know she will drink the drink. We brought the drink with so you could do that (I pull out the drink)". "We only do the liquid with babies or children who have a g-tube or n-g tube. The liquid test isn't as accurate because liquids move through the stomach faster than solids do. Usually little kids will eat enough of the eggs to make the test work." "Well, she doesn't like to eat, which is why we are here. The drink would be easier." "Well, let's try the eggs first. You just have to get her to eat some of them. Get as much of them into her as you can." "Okay, we can try the eggs first."

So, the special eggs come. Fortunately they arrive with ketchup- which Juliana has recently shown a liking to. They gave us 15 minutes to get as much eggs into her as we could. Ryan loaded up each egg bite with ketchup. After maybe 4 or 5 bites, Juliana was done. She refused to open her mouth. The techs came in and told us we had to get her to eat more eggs. I explained that she was all done, that she would not eat anymore and that if she had not eaten enough they needed to put it into her drink. By this time Juliana was crying on the floor.

The head tech came back and told us that they were not able to put the isotope in her drink now because she had some already in her system from the egg and the test would not be accurate, because they wouldn't be able to tell what was solid and what was liquid in her stomach. "You told us that we had to get her to eat some of the eggs. We did that. If you had told us she needed to eat all of the eggs, we would have told you that that was not going to happen. Now what are we going to do?" "You will have to come back another time and do the test". To which Ryan immediately replied, "We don't want to come back here." I asked, "Can we schedule the test right now while we are still here?" "Well, I need to get a new order from the doctor since she didn't complete the test." "Are you kidding me?!? You know what, I'll just talk to Dr. Fishbein at our appointment later this month." If I was this incompetent at my job, I would be fired by now.

Since they couldn't do the test, we fed Juliana (who drank her drink- about 4 ounces and stopped crying) got her dressed, and then left to go back home. I called my mom to let her know why we were coming home, only to find out that she was also having a bad day- she lost her contact and Noah dropped a flashlight in the toilet after he peed in it- a perfect day all around.

Sometimes it seems like God is just finding ways to test us. "Hmmm, what can I do to set off Jenna and Ryan today? I think I'll mess with the test that has taken them a month to set up. Sounds like a plan to me." I know that's not how He works, but today that's how I feel. On a positive note, I only swore in my head and via text message and I didn't punch anything.

The giant x-ray machine she would have been in

Trying to eat the ketchup-y eggs

Finally getting to eat/drink something she liked

Feeling better after getting to eat

Helping Daddy work from home

Baby Jesus, Optimus Prime, & Megatron...

2010-11-28T18:41:00.002-06:00

Christmas is Noah's favorite time of year. As soon as Halloween is over he starts asking to put up the Christmas tree. Yesterday as soon as he got up from his nap he asked, "Daddy, could we please put up the Christmas tree?" Ryan and I were both tired from our Thanksgiving Friday, but who could resist a little boy who asked like that. So, Ryan said yes. While Ryan made room for the Christmas tree, I dug out the Little People Nativity set to occupy Noah and Juliana for a little while. Noah immediately dragged Juliana over to it, set it up and told her the story of Baby Jesus. It was so sweet, and lasted for about 5 minutes. Then, Noah grabbed Optimus Prime and Megatron and brought them to the Nativity scene. At first they were also worshipping Jesus, but then they decided to attack everyone. Juliana joined in by taking the angel, Gabriel, and throwing him against the wall.

Well, I guess you can't be sweet all the time, right?

Counting Calories...

2010-11-27T14:52:00.002-06:00

No, this isn't going to be a post where I complain about eating too much at Thanksgiving or how I need to lose weight. Quick recap: Last month when we were at Children's with Juliana they wanted us to stay in the hospital so that they could monitor and journal her food intake for three days. Ryan and I refused to keep her in the hospital for that, since we had done that for her first year of life (Ryan even provided them with a color coded graph for solids and liquids). Since we are both (to be honest) nerds/science people we were more than capable of journaling her food intake outside of a hospital setting, so we were sent home with the hospital recommended "journal paper" (which I have to say is less detailed then the one we kept) and told to mail it in after we logged her food for three days.

Now, it isn't that we have been procrastinating doing this. There really hasn't been a time when we had three consecutive days where we could log her food intake- we have to weigh her food before she eats it and after she eats it. Since Juliana goes to day care five days a week, we definitely did not want to ask Theresa to worry about logging her food intake and there are only two days for a weekend. So, that brought us to Thanksgiving. Ryan brought home his scale that he uses at work and we started her journal on Thursday. It really isn't that difficult. The only thing we have to do is keep a close eye on her at the table, as she likes to feed the dogs her food instead of eating it herself. It's not that we allow her to feed them from the table normally, because we don't, it's just this time we have to account for every piece of food.

I don't know what they hope to gain from this. We told them that she eats age appropriate foods, just not enough. Maybe that's what they will see from the journal. We know she's not malnourished, because her bloodwork didn't show it. Either way, I will be glad to have this done. Thursday she is being evaluated by a nutritionist who hopefully will give us more ideas on how to add calories to her food- besides the obvious: fat. Maybe she will be able to find value from the food log as well. Who knows? Anyway, for your amusement, I took pictures of the weighing of a cinnamon roll that we made as a treat for breakfast, and then both sides of the "official" food journal- as you can see, her food intake each day is quite different even though she's on an appetite stimulant (the first day is the bottom right corner, the second day is the middle picture, with day three right below it).

Thankful...

2010-11-24T00:26:00.002-06:00

Reading my blog you may not think that I am thankful this year, but I am. Here are the things I am most thankful for this year.

1) Ryan. He puts up with me and loves me no matter how crazy or moody I get.

2) My kids. They love me...even on the bad days.

3) My mom, dad, sister and brother in law. They have been so supportive through everything we have gone through, even when we have our differences. My in-laws have been great and supportive as well. I know it's hard for them being in a different state and far away from us, but they do a good job of encouraging us as well.

4) All of Juliana's therapists: Peggy, Laura, Meghan, Connie, & Suzy. Without them, who knows where she would be? Before them, Juliana wouldn't open her mouth to eat, she couldn't sit up on her own, she couldn't crawl, walk, and was generally unhappy. Technically with the lack of calories she eats she shouldn't be able to do any of the things she does now, but she can and I chalk a lot of that up to her very hard working therapists.

5) My job- for several reasons. I have excellent insurance which allows us to see all the necessary doctor's for Juliana. It allows me an "escape" from all the stress I am under with Juliana. Just having a job in this economy is something to be thankful for and being a tenured teacher gives us something to not worry about.

6) Our pastor, Dennis. He has encouraged me a lot lately, and I have needed it. His sermons have also been challenging me alot lately.

7) Friends at school & friends at church. Sandy, Lisa, Lauren, Mary Ellen, GP, and Samantha have really been there for me this year. Tristi, Kelly, Kristyna, and Sarah have been encouraging me a lot.

8) Theresa, our babysitter. Her willingness to do whatever it takes to get food into Juliana allows me a mostly worry-free day. She opens up her house so that Laura can do Juliana's speech therapy two days a week as well. Plus, she genuinely loves my kids.

9) All of you who read my blog. Whether or not you leave me a comment, I appreciate that you take the time to read what I write.

10) My life long friends, the crackbabies: Adriane, Cari, Juli, and Bucky (a later edition and leader). Friends since junior high, it's like we haven't been apart when we get together. Your text messages and checking in on facebook or through email make my day. I miss you guys.

I am sure I am forgetting some, but at this time I will chalk it up to my brain injury and lack of sleep. Have a wonderful Thanksgiving!

Visitor...

2010-11-23T14:05:00.000-06:00

One of the things I enjoy about teaching is when students return to visit. Yesterday one of my favorite students came to visit me. Yes, I know teachers aren't supposed to have favorites, but there are some kids that really touch your life and you can't help it. I never treated her any different in class than any other student, but secretly she was one of my favorite kids.

I had Shannon last year in Anatomy & Physiology- Honors. Shannon is an amazing young lady. She was ranked 7th in her class, a cheerleader, very intelligent, extremely nice, and very active in school. The weekend before the seniors last week of school, Shannon was in an accident. She was thrown from a golf cart and hit her head on the ground. She experienced a traumatic brain injury. The kids she was with were afraid they would get into trouble so they didn't call for help for several hours. When I found out, I was terrified for Shannon. This young lady was looking forward to college, she had been accepted into a nursing program, and now they didn't even know if she was going to be able to go to college at all.

I started sending Shannon emails on facebook and cards to her house. I figured that since I had gone through something similar it might help her out a little bit to know she wasn't alone. The highlight for me was when I saw her at graduation. She looked a bit dazed and out of it, but I got to talk to her and give her a hug and that's when I knew that she was going to be able to make it.

So yesterday Shannon came in for a visit. It was so nice to see her. She looked really good. She was able to go away to college, and her grades are great- although she is a little too hard on herself about them. We talked about head injuries and the things that we both find overwhelming and what we do to cope with them. She has a really positive outlook and I know she is going to make an amazing nurse when she is done. I am amazed that she was able to go away to college only 3 months after her TBI. I don't think I could have done that. So Shannon, you are an inspiration to me and everyone out there who lives with a brain injury. I am so proud of you! Please come visit again.

Meltdown...

2010-11-19T11:06:00.000-06:00

Ryan went out of town this week. Juliana started back on her appetite stimulant and started projectile vomiting again. Noah had two accidents in the night for the first time. Needless to say it's been a draining week. There was a brief highlight to it. Wednesday night my dad spent the night because he needed to drive to and from Indianapolis on Thursday, so he entertained the kids for a couple hours before bed while I did laundry and made Noah's bed and got the kids' stuff ready for Thursday.

Ever since Juliana's visit to Children's Memorial we have been trying to schedule a Gastric Emptying Study. In our discharge papers from the hospital it said if we didn't hear from Radiology within 3 days we were to call ourselves. Of course we never heard from Radiology, so when I called, I was told the order was never put in the computer. I called the doctor and left a somewhat nasty message, of course it was a Friday, so I knew no one would get back to me that day. Last week a nurse called back and said if Juliana wasn't projectiling anymore then she didn't need to have the test. Well, it had been 3 weeks since her last projectile episode, so we didn't need to schedule the test. This past Sunday we re-started her appetite stimulant (she has to go off of it when her appetite decreases since her body gets used to it), and on Monday she began to projectile again. I called the doctor's office and phone tag started again.

Yesterday the nurse called me back and left me a message assuring me that the order was in the computer and all I had to do was call the number she left on the machine to schedule the appointment. I copied the number down last night. Today as soon as my plan period started, I dialed the number. The first person I talked to had never even heard of the type of test I was asking about and transferred me to the nurse's department. I waited on hold for about 10 minutes. The nurse was fairly helpful. She asked me several questions but could not find the order in the computer. I think she could hear the frustration in my voice as I forced myself to be pleasant. She put me on hold several times while she tried to sort out the mess and she even called the doctor's office for me. After 30 minutes (so now 40 minutes of my 56 minute plan period is gone) she found the order and told me she couldn't set up the appointment but Radiology could and she would transfer me to that department. She even gave me the number in case we got disconnected. I waited on hold with Radiology for 5 minutes until I got a human being. This one was not as nice as the nurse. She told me there was no order in the computer. I asked her how that could be when the nurse I was speaking to before her had been able to find it. So after another few minutes she found the order but then proceeded to tell me that she couldn't schedule the appointment.

"You've gotta be kidding me," I said. "Why the heck not?" She said that the order was in the computer but the doctor's office had not released the order. "What in the world does that mean?" I asked, trying to keep my temper. Basically it meant that I needed to call the doctor's office and tell them to release the order. I looked at the clock. I had about 6 minutes left before my plan period was up. I dialed the doctor's office, pushed all the buttons to get to a nurse, but of course I got voice mail. I left as civilized a message as I could explaining that I have been trying to schedule this appointment for 3 weeks and could they please just release the order and hung up the phone.

I put my head down and my frustration got the best of me and I started to cry. Fortunately the only people in the office were Lauren and Tino. When Lauren asked me what was wrong and I started to tell her, these words I never use came out. I don't often swear and I never use the "f" word, but today as I melted down those words came out of my mouth and while I felt better at the time, I am still embarrassed that I let my guard down to let those words come out. Then, of course, the bell rang and I had to compose myself to go to class. At least it's Friday and Ryan comes home tonight.

Happy Birthday, Mom!

2010-11-18T05:13:00.000-06:00

Happy Birthday, Framma! To the Momma who is my champion. Who lets me call her whenever and whatever time it is. Who lets me cry on the phone. Who doesn't yell at me when a swear word slips out. Who loves me no matter what. Happy birthday, Mom! We love you very much!

So Much To Think About...

2010-11-14T23:47:00.000-06:00

I didn't want to go to church today, but I knew I needed to go. I have been angry with God for a while. I sit in church and feel like a fraud. I sing the songs and tell people I'm fine but I'm not. I tell my friends who are hurting that I'll pray for them, and I really mean it and I really do it, but when they ask me what they can pray about for me, I say "oh nothing we're fine". Why do I do that? I spent the first year of Juliana's life praying to God for her to get better and for the doctor's to figure out what was wrong with her and we heard nothing. An entire year was spent praying to God and nothing came of it. I felt like I didn't matter. So then I got angry and climbed up my hill and stuck my middle fingers up in the air and said, "well screw you then, I can do it by myself." It's been six months since I've taken on that attitude, and clearly that isn't working either.

Someone told me that God was going to "teach us something through this". I told that person that that was a load of horse crap (well, I used a different word, but I have to keep this G-rated) because what kind of loving God would use an innocent baby as a lesson? Seriously? Are you kidding me? My mom tried to give me a different explanation and I wasn't buying it at the time either-sorry Mom.

So this brings me back to the beginning. I didn't want to go to church this morning, but I did. Dennis gave an excellent sermon on worry. It was like it was written for me (well played, God, well played). The descriptions fit me to a "t"- up at 3 am, not sleeping, not eating, etc. It ended with Dennis challenging us to give our worries back to God. Now, I'm not saying that I'm ready to do that, because I'm still angry, but it definitely has given me something to think about while I am up at midnight or 3 am.

Saying Goodbye...

2010-11-10T17:39:00.001-06:00

Tonight I am meeting my friend Lauren and together we are paying our respects to Drew's family. I can't tell you how thankful I am that she will be there with me. Every time I go to a wake for a student this is the hardest part for me. It's not supposed to happen this way.

This picture sums up all of the emotions that I am feeling, so I'm not going to write anymore about it before or after I get home. Thank you for your sacrifice, Drew. God Bless You.

Tough Day...

2010-11-09T18:16:00.001-06:00

I knew that today was going to be tough. This morning one of my co-workers ran into me in the copy room, I had had her son. He's a Marine in Afghanistan. She talked to him this morning and told him that I had lost a student in Afghanistan. He told her that "Mrs. Mahlberg's heart must be breaking because she loves her students so much. Mom, you need to make sure she's alright". He told her to give me a hug from him. That made me cry this morning before school even started.

I have never experienced a military processional and I had no idea what to expect, but I knew I would most likely cry. What I didn't expect was that when we were asked to explain to our first period classes what we were going to do as a school to show our respect, that I was going to start to cry in front of my class... but I did. In my years of teaching, I have had several students die and it never gets any easier.

During my plan period, my friend Lauren and I were working on the computers in the office. Another teacher came in and started complaining about how what we were doing was taking away from the test that she was giving during that period. Lauren and I both were giving tests today, and we both had Drew as a student. We both held our tempers to the best of our abilities as we tried to explain that it was not an "inconvenience" when this former student gave his life for our country. She continued to complain, and both of our tempers continued to rise and a few choice words slipped out before Lauren and I walked out of the office to get away from it. I don't understand how someone could be that detached to not understand the purpose of honoring someone's sacrifice, when most of my students got it.

When the announcement was made to proceed outside, I found Lauren. We both held our flags and tried to make small talk as we waited for the processional. There were 6 helicopters flying around the school. We could see other adults lined up on the main road waiting to pay their respects. Then we saw the flashing lights of the motorcycles. I gave a little gasp as I saw all of the motorcycles. Later a student told me she counted 63 of them. My eyes teared up, and the student population fell silent- you could have heard a pin drop. Then I saw the hearse and I started to cry. Next to me I could hear Lauren crying too. We both tried to keep it quiet. A student standing next to me put her arm around me- I don't even know her name. They circled the school, and when they came to our side all the students held their American flags up, and I continued to cry.

After the procession left, everyone stood there for several minutes in silence just letting it soak in as the sound of the helicopters faded away. Lauren and I put our arms around each other and joined the population walking back into the school. We commented to each other about how difficult that was and how we never want to do that again. We also mentioned how good the students were and how respectful they were.

Tomorrow will be just as tough. Tomorrow is the wake. Tomorrow Lauren, myself, Mary Ellen and Bernadette will see Andrew's family and tell them how sorry we are for their loss, but that won't stop the hurt.

Andrew died a hero. He gave his life for others. Here is another link about him.

A Fallen Soldier...

2010-11-03T20:10:00.007-05:00

I had Drew (Andrew) Meari (this takes you to an article about him) as a sophomore in Investigations of Matter & Energy. He was wrongly placed. A bright young man, he had goofed off his freshman year and done poorly in his Biology class. He easily earned A's both semesters in my class and was my assistant in the classroom. I could always count on him to help out my sub when I was absent, he would help set up labs or pass back papers. He was an all around nice kid, but his home life wasn't so good and he started to get into trouble at school his junior and senior year. After graduation he enlisted. I always support my students who join the military, but I always fear the day when I turn on the news or log onto facebook and see the notice. You know the notice that I'm talking about.

Yesterday Juliana got up around 3:50 AM. After I finished feeding her, I grabbed Ryan's iTouch and logged onto facebook (I haven't been sleeping well for the past few months), and I saw the words that I've been dreading since the war started. RIP Andrew Meari. My knees gave way and I started to shake. No! Not Drew! I wanted to scream. He was just getting his life together, he can't be dead already! Another former student, another soldier, reminded me that Drew made the ultimate sacrifice and gave his life for our country, but it still hurts. He was too young to be taken from us.

Thank you Drew. You are a true hero (another article about him and the other young man who died).

Thank You, Kelly...

2010-11-01T02:23:00.000-05:00

Last week was rough. We had a big disappointment with our visit from Children's Memorial. I can't even tell you how much that devastated me. I had had such high expectations and hopes. I can't even talk about it because it makes me so very angry. I know I posted the story, but that doesn't even begin to tell you what we went through, I gave you the edited version, the version you would see if you put on your rose colored glasses. I haven't even begun to deal with the anger I feel about what happened and it has put me into a kind of "funk". It's not a depression, I've been depressed. I went through a horrible depression after my brain injury and after the Jeff incident, I know what depression is like and this isn't it.

Friday night, Noah and I were hanging out watching some Thomas the Train while Ryan put the little girl to bed, when the doorbell rang. I opened the door to find Kelly standing on my doorstep with a BEAUTIFUL bouquet of sunflowers.

Kelly, I can't begin to tell you how much that brightened up the mood in our house. I can't begin to tell you how much that gesture meant to me, but it meant a lot, so thank you, Kelly. You are a good friend. I hope that one day I can be there for you the way you have been there for me these past few years.

Special Visitor...

2010-10-31T23:20:00.000-05:00

Earlier in October we had a special guest. Holly came back to visit. Noah was so excited to have her back and I didn't think that Juliana would remember her, but I really think that she did. Unfortunately for Holly, she came just as the stomach flu was making it's way through our family. At the time we thought that everyone was safe and only I had come down with it, but we were grossly mistaken. On Saturday while we were eating dinner, Juliana projectiled at the dinner table. Holly fell right back into the routine from when she lived with us (how sad is that?). She got Noah into the living room while I got Juliana into the bath and Ryan cleaned himself up (he had been holding Juliana at the time). Then Holly helped clean up the projectile. On Monday, Noah and Ryan came down with the stomach flu and Holly helped take care of Noah. Holly's last day with us was on Tuesday, and on Friday I received the text message from her that she had come down with the stomach flu. Poor Holly!

Halloween...

2010-10-31T19:02:00.003-05:00

For the past few days, Noah has been asking if it was Halloween yet. Ever since he saw "How To Train Your Dragon" back in April he has wanted to be Toothless, the Night Fury. I went on a hunt to find him a costume (I tried to convince him to be Winnie the Pooh again because he still fit into the costume, but that was a bust). I went online to look, but everything was sold out. Not that it mattered, because the smallest size I could find was a size 7 which Noah definitely is not. I finally went into desperation mode at the beginning of the month and went on ebay to get his costume. I found it in 5T, which was still too big, but was close enough and bought it.

Back in August, Jaime and I had gone to Once Upon A Child to get Noah and Liam pants for the fall, and I had found a Tinkerbell costume for $5.50. It was 6-9 months, and secretly I hoped Juliana wouldn't fit into it by Halloween, but I bought it anyways. It fit her perfectly and as soon as we put it on her, she knew how pretty she looked.

After the kids got up from their naps, we got them up and dressed in their layers and costumes. Noah was so excited and Juliana picked up on Noah's excitement. Juliana went to 4 houses with us and then went home to hand out candy with her Daddy, while Noah and I went trick or treating for a little while longer. Noah is not a candy kid, and while he was so excited for Halloween, after 20 minutes he decided he wanted to go home and hand out candy for the rest of the night. So, we went home and emptied out his "pumpkin". He took the candy that he didn't want and added it to the candy bowl that we had by the door to give out. I think Noah had more fun handing out candy and yelling, "Happy Halloween" then he did going up to the houses and saying, "Trick or Treat, please"!

Juliana didn't like coming home from Trick or Treating...

Trying To Stay Positive...

2010-10-29T00:00:00.001-05:00

Well, our visit to Children's Memorial was a big disappointment. Our GI doctor told us we would be seen by a bunch of different doctors and that we would leave with a diagnosis. Juliana was seen by a speech therapist, physical therapist, occupational therapist, 3 GI doctors, & an attending doctor. The 3 therapists all agreed with the reports that I brought along from our current therapists (shocker). The 3 GI doctors came up with the idea of doing an upper GI test and a 72 hour calorie count, despite the fact that Ryan and I both mentioned that Juliana was not eating in the hospital (one doctor said, "oh, she will eat when she gets hungry" to which Ryan replied, "you're funny"- I think we know our daughter). The 72 hour calorie count was sprung on us on at the end of the first day by our nurse. Ryan and I discussed it and agreed that this was a terrible idea, and if they really wanted to do a 72 hour calorie count we were more than capable of doing it at home and we didn't need to waste our time in a hospital to do that. They had us weighing Juliana's food before she ate and after she ate and recording it. In the hospital it took longer to do the weighing than it did for her to eat.

The first night we were terribly disappointed and discouraged. Both of Juliana's speech therapists called to check on us, which was very nice. When Ryan left to go home, I sat on my "bed" and watched Juliana sleep in her baby jail/crib. I pulled out my journal and I just let my anger at the whole situation and God flow into it. I sent out a couple desperation emails for help putting it into perspective. I put on my iPod and let my music flow into my brain and I began to calm down. It was a rough night. I got about 3 hours of sleep. It's hard when you share a small room with another person, and besides Juliana there was a 2.5 month old baby and her mom in our room. Down the hall another baby screamed for about 2 hours during the night- that was rough to listen to when there's nothing you can do to help.

(Baby Jail- imagine the rails all the way up past Ryan's head)

The next day Juliana decided to start the day at 4 AM. Ryan showed up in the morning and we decided that if the doctor's still only had the calorie count idea we were going to go home. When we finally spoke with the doctor's, I demanded to go home. The doctor's were a bit taken aback that we did not want to stay in the hospital for the calorie count. I explained as calmly as I could that Ryan was a food scientist and that we were more than capable of monitoring Juliana's food intake at home as we had done it the first year of her life. I then produced her chart and graph that Ryan had printed out of all her eating for the first year of her life. I pointed out that since she had been in the hospital her weight had gone down because she wasn't eating. We asked if we could get the GI study done that day- we were unable to do that, because the hospital didn't have the radioactive isotope that she needed to swallow (you would think they would have had that ready since they knew we were coming in). They spoke to our GI doctor who agreed that we could go home and the discharge process began.

Through out all of this, I struggled to find the positive. Here is what I have found.

1) Juliana did not need to get a G-tube (the threat is still there, but for now it is off the table).

2) The floor we were on had a play room, and if it wasn't for the play room we would have gone insane with a very mobile toddler.

3) The nurses were amazing. They did everything to accomodate Juliana.

4) Every day from 10-11:30 they have a 0-3 year old play group where you drop off your toddler to play with volunteers so that you have a break. This allowed us to speak with the doctors and make our case to go home. Juliana played so hard that she fell asleep.

5) There are volunteers who come around with a cart of books and toys that they bring your child to play with in their room.

6) My child is okay. She may not be growing or "thriving" but I saw children who were in bad shape. I know that in order to grow & thrive & develop you need to eat and desire to eat, and this is a big deal (believe me I know), but Juliana is able to do things that she probably shouldn't be able to do given her daily caloric intake.

While I am still angry about how the visit went and that we weren't sent home with a diagnosis and didn't see all the specialists we were told we were going to see, I try to focus on the positives because I don't want to be angry & disappointed all the time.

Pep Talk...

2010-10-22T22:54:00.003-05:00

I have mentioned in many posts how much we love Juliana's therapists. It's true. We LOVE them. They are amazing women. Uh-May-Zing. All week I have been trading emails with Laura, Juliana's speech therapist. She asked me to give her a call when I had a free moment. Even gave me her home phone number so that I could call her at home- now that is dedication.

I haven't really wanted to talk to anyone on the phone this week. I've preferred email. I haven't even wanted to talk to my friends at work. I've told them the bare minimum, but I just don't want to talk about it. I don't know why. Maybe because then it will make it more real. I don't know. Maybe because I'm up most of the night thinking about it and I want to escape from it all at work- more likely the reason.

Anyway, I finally called Laura today on our way to the chiropractor. Her whole reason for wanting me to call? She wanted to encourage me. How nice is she?!? We talked for about 20 minutes, and it was nice.

I did find out that she is feeling like she has been useless to us and to Juliana because of the whole eating issue. However, I did remind her that Juliana knows how to chew and to swallow thanks to her and Peggy, and there really isn't anything that she can do for Juliana feeding wise now unless she wants to hold her down and force feed her- which we all know is not an option. So, I'd like to ask you to pray for Laura, because we don't want her to feel useless. Juliana has progressed. She even has a few words that she says now, thanks to Laura's persistence.

Forever Running...

2010-10-20T19:52:00.002-05:00

Ryan & I are exhausted and it's only Wednesday. Last Friday we were given some tests to have done for Juliana before she is admitted this coming Monday. Over the weekend we figured out who would do what, and we also decided that we needed to get other input in on the G-tube issue. I spent the weekend emailing Juliana's current speech therapist, the fabulous Laura, and Juliana's former speech therapist, the equally fantastic Peggy. Both ladies have been extremely helpful this week as we prepare for next week and have helped us come with questions to ask and given us access to other resources that are out there. I also made an appointment to meet with Juliana's pediatrician to get his input.

One of the disadvantages of being a teacher is that I have limited access to the phone, so while I made phone calls on Monday during my plan period, I had to leave them Ryan's work number since there was a better chance of speaking to him than to me. On Monday Ryan came home with a bunch of sticky notes of information, along with some more tests for us that we needed to have done for Juliana. What was once a little hill, was growing into a mountain.

We needed to get a urine sample from Juliana, which isn't easy when 1. your baby isn't potty trained, & 2. your baby doesn't drink much and doesn't have many wet diapers. The doctor's office had given us several bags and suggested we bag her overnight to have the best chance of getting a sample (on Friday, I had hung out at Children's for an hour and a half with a bag on her hoping she would pee-which she did not). The bag kept coming off in the night, so it was becoming ever more frustrating on getting a urine sample.

Yesterday we met with our pediatrician. Dr. Russell is a very nice man and he met with us for an hour- we had the last appointment. He was patient and waited for me to write things down in my notebook and would spell things out for me as well. When he found out that we needed to get a urine sample and had been failing at it, he warned us that Juliana wouldn't like his way, but it would get the job done. He had one of his nurses run a catheter in her. I was the lucky parent who got to restrain our little girl while she screamed like I never heard her scream before (Ryan had a hard time with this part). During this part, Dr. Russell took Noah for a tour of the office and played soccer with him in the hallway.

Ryan was able to get the remainder of her tests done today, so that part of the stress is off. I am still trying to get my plans ready for school next week, and finally found a substitute who has a science background so that my students won't be doing "busy work" for the days I'm out of the classroom. We are both still very stressed, and even the smallest things have set us off. Please pray for our family as we go into this. We could sure use it. We want to make the best decisions possible for our little girl, and we still don't know what to do.

Disappointment With A Hint Of Relief (Maybe)...

2010-10-16T02:22:00.004-05:00

I can't sleep. Yesterday we had our visit to Dr. Fishbein. It went just how I expected/dreamed it would go. They weighed Juliana. She went from 17 lbs 15 oz to 17 lbs 7 oz. She lost half a pound- HALF A FREAKING POUND. I explained that she had had the stomach flu earlier in the week and since then had only gone one day without projectilile vomiting. The nurse was sympathetic, but Dr. Fishbein was not.

Ryan was not able to come with me to the doctor's appointment- he only gets so many vacation days a year, and he tries to save some of them for when we are together as a family- so my dad came with in case I needed support. I had pretty much readied myself for anything Dr. Fishbein was going to throw my way. When he looked at all her weight checks from the 2 months I took her to the pediatricians every 2 weeks and had her weighed, and he looked at everything else, I could tell from the look on his face he was not pleased.

Long story short, Monday October 25 - Tuesday October 26, Juliana will be admitted to Children's Memorial downtown. While she is there she will be seen by a bunch of specialized doctors, therapists, and Ryan and I will meet with a general surgeon who will discuss with us about putting in yes, the dreaded G-tube. Dr. Fishbein asked me what I thought about this, and I told him that I wanted to vomit- I didn't tell him that inside my brain I was screaming the "F" word over and over (thank God I had my filter that day, especially since Noah was with at the appointment- I don't need him learning about Momma's potty mouth).

We are also starting Juliana on an appetite stimulant, to see if that can help her gain weight in any way. Who knew they made those kinds of medicines?

So, that is where we stand. It's a little overwhelming, I'm not going to lie. Fortunately, my parents live 90 miles away, and my mom is going to come and watch Noah for us so that we can be with Juliana (Mom, I already started preparing Noah for this and he is excited to have "Framma" all alone to himself and wants to know if "Frampa & Frampa" are also coming).

It could be worse though. It's only hospitalization for 2 days, and Ryan and I have NOT agreed to the G-tube yet, we need to hear all our options before we decide. We are glad that we will be in a central location, that Juliana will be seen by many doctors, and that maybe when we leave they may have a diagnosis as to why our little girl won't eat and won't gain weight (that's the relief part). Anyway, just keep us in your prayers please.

Eight Years Ago...

2010-10-15T00:00:00.001-05:00

Eight years ago, today, I woke up with a horrible migraine. I took some migraine medicine & went into the bathroom. That is the last thing that I remember. Ryan says that I woke him up. I was crawling on the floor of the bedroom holding my head and asking him to call me in to school over and over. I was slurring my words. I had a huge bump on my forehead and on the back of my head. We guess that I may have fainted in the shower hitting my head and then got up too quickly and fell again hitting my head another time. Like I said, I don't remember. I try to remember but I can't.

I was in one of my best friends weddings three days before that. Here's a picture. I even spoke at the reception. I see pictures of myself there, but I don't remember being there, which makes me sad. Sorry, Jules, I don't remember being in your wedding :-(

I don't remember anything for several weeks after I hit my head. I remember little things, like getting lost on the way to the CT scan and Ryan having to leave work to come look for me (I used to be good with directions), forgetting how to get dressed, walking away from the stove while the burner was on, but I only remember those things because Ryan told me they happened. I really don't remember anything for about a month after I hit my head.

I had to relearn how to do things. I kept directions on how to get to and from work taped to my steering wheel, with my phone number taped there as well. I wrote out what I was going to say to my classes word-for-word every night (I should have taken a leave of absence, but I didn't know any better). Finally, my mom convinced me to tell my migraine doctor what had happened, which is what I should have done to begin with. As soon as I told Dr. Merle what had happened and that I was having memory problems, she got the ball rolling. She ordered an MRI, an EEG (I have a history of seizures), she ordered all sorts of tests. One of them involved me spending 8 hours in a room feeling dumber than I thought I could ever feel, but it proved beyond a doubt that I had lost my short term memory.

I'd like to say that since then it's been all sunshine and roses, but it hasn't. I went through some horrible depression. Fortunately with the help of some medicine and a very special golden retriever I snapped out of that. I had rage issues, and sometimes I still do. I don't have a filter anymore, but for the most part I've learned to compensate for it (although from my previous post you can see that sometimes I still falter). One of the things that helps keep me sane is my calendar and color-coding. People keep telling me to go digital and get a PDA, but I need to be able to see the dates for the entire month or I get overwhelmed and begin to freak out. Here's my calendar for the month of October.

For those of you curious about what the colors stand for, here's a break down:
Pink = Juliana's doctor appointments, Green = Juliana's therapies,
Orange = Before School meetings, Light blue Wednesdays = Doctor appointment,
Dark Blue (yes there's a difference that doesn't show up on camera) = Mandatory School Supervision/Institute Days/No School,
Yellow = Birthday's/Anniversaries/Mom Connection, Purple Pen= Swim Lessons. See why I need to see the entire month at a time?

This is about how my calendar looks every month. Sometimes there are more doctor's appointments in there, like if Noah needs to see the eye doctor or dentist or if I have to see a doctor or dentist or if Juliana needs weight checks, sometimes there are no doctor's appointments in there (those months are VERY nice).

Get Outta My Head!

2010-10-13T18:28:00.002-05:00

This week has not been a good one in our house. Our house became the "vomitorium". Ryan & I worked as a team doing laundry, changing sheets, and bathing children until Ryan was taken down by the flu on Monday and then I was on my own on Monday and part of Tuesday until Ryan was feeling better.

Juliana's bout with the flu has been the worst of all four of us, as it has triggered her projectiling again. Unfortunately it isn't her traditional projectiling where she gets the "look" on her face and we can prepare. This projectiling takes place any and everywhere- outside, inside, at the table, playing on the floor. There is no warning, it just happens.

In my last post I mentioned that I am scared about the visit this Friday, well set the terror level to orange now. I am having trouble getting to sleep. Satan has gotten into my head and is whispering all sorts of things into my mind as I try to drift off to sleep, and I can't seem to get him out of there. He's good at it too. It starts the same way every time, telling me that my baby isn't growing- which is kind of true but not totally true- "healthy babies grow, yours isn't growing, so what are you doing wrong?" Then he moves onto other things, "if you loved her more, she would eat," and so on. I know it's ridiculous to believe things like this, and there's a reason he's called the author of lies, but when you are running on empty and are ready to break, it sure makes it hard to fight against the lies that are being planted in your head.

Satan, get outta my head!

Praying For Peace...

2010-10-11T08:00:00.004-05:00

When I had the flu last week, we decided to send the kids to Theresa's on Friday so that they would be away from me and have less of a chance of getting infected. Friday passed with little incidence and we honestly thought we were in the clear.

Saturday morning we discovered we were mistaken. Ryan went in to get Juliana to discover her covered in vomit and diarrhea. The one kid that could not afford to get the flu now appeared to have it. She then proceeded to projectile after every bottle for the remainder of the day, which is different than vomiting from the flu, trust me, I think I'm fairly educated on the subject by now.

Needless to say, I wanted to punch something and scream the "F" word at the top of my lungs. Not because I had to clean up projectile, please, that has become a regular part of our life by now (although she did go almost a month without doing it which was nice), but because this Friday I will be taking her to Children's to see Dr. Fishbien and he will be looking at all her weight checks for the last 2 months and deciding whether or not he wants to put a G-tube in her stomach. I've never really been nervous about one of these appointments before, but this time I am scared. One of her weight checks showed her losing weight, not a lot, but she still lost weight. Her most recent weight check had her at 17 lbs 15 ounces, but now she's had the flu, diarrhea, and has projectiled daily since Saturday. I am afraid that her weight will have gone down once again, because her diapers have barely been wet all weekend and I'll say it again, I am scared. I don't want a G-tube put in my daughter, but I do want to do what ever is best for her to grow and develop and right now she is basically not growing. She has been in 6-9 month clothing since this spring and she's going to be 18 months at the end of this month.

Yesterday during communion at church, I prayed for peace for this week. I am a nervous wreck about this Friday appointment and I don't want to be. I know that whatever God has in His plan for Juliana is what is best for her and our family.

Hey God, Part II...

2010-10-08T11:56:00.003-05:00

So, last night I had to complete my first of two mandatory supervisions for school. I signed up for soccer supervision for my first one, and I didn't think when I signed up that it was the first Thursday in October so I was going to miss Mom Connection. To top it off, they told us not to bring our kids with to our mandatory supervision duties, so I wasn't going to get to see my kids after school and I had to cancel Juliana's OT. Needless to say, I was not in a very good mood yesterday.

Fast forward to about 5:30 when I was walking the crowds, and I noticed a little boy that looked just like Noah holding onto the hand of a man holding a little girl who looked like Juliana. My most thoughtful husband had brought the kids up to the soccer game to see me, along with some dinner (McDonald's for Noah's enjoyment- not ours). We sat in the stands and ate dinner together. I didn't eat much because my stomach was starting to hurt. They stayed for a little while and then Ryan took them home to put them to bed.

Around 7:30, I began to feel nauseous, and fortunately I was able to make it the stadium bathroom before I threw up. I thought there was nothing more glamorous than throwing up in the stadium bathroom, but I was wrong. I started to feel better, so I returned to the outside and went to sit in the stands. I began to feel nauseous again, but the bathroom was too far away. Fortunately I was able to make it to a garbage can in time- now there really is nothing more glamorous than that. I threw up one more time, and then finally the game was over and all I had to do was return my walkie talkie and make it to my car. Easier said than done. I made it into the school and fortuantely another garbage can. Two students were kind enough to give me some gum to chew and followed me to the office to make sure I got in and out alright, and a female custodian helped me out of the building.

I drove home breaking the speed limit and running the stop signs in our neighborhood, and ran into the house, thanking God that the bathroom was right by the garage door. Ryan was slightly clueless (and I think annoyed since I didn't kiss him hello) as to why I needed to get into the bathroom so urgently until he heard me throwing up.

Around ten o'clock, Ryan convinced me that I probably wasn't going to stop throwing up any time soon and it would be smart to call in sick to school and write my sub plans and send the kids to Theresa's on Friday so they weren't exposed to me. So, in between trips to and from the bathroom, I conceeded that he was right.

Now, I know that in my previous post I asked for a break, but this wasn't the break I was asking for. I'd like to take my request back now. The ironic thing is that at baby Brendan's birthday party I had mentioned that I hadn't had the stomach flu in about 8 years- funny how words come back to haunt you, isn't it?

Hey God...

2010-10-06T20:15:00.003-05:00

Hey, God. I could really use a break. Even if it's just for a day, or even half a day. Please.

But, if it's not in Your plan, that's okay too. I understand.

More Doctors...

2010-10-04T19:29:00.002-05:00

Today Juliana had her first of three doctors' visits for the month of October. Ryan worked from home so that he could drive with us to the Rehabilitation Institute of Chicago, which is on the campus of Northwestern University. We dropped Noah off at Theresa's house, because we never know how long the visit is going to take and it's hard enough to entertain one child at the doctor's office, let alone two. I did promise him a special "momma-Noah" date when we picked him up, and that seemed to put him in better spirits when we left.

The drive to Chicago was not a bad one- you never know how 55 is going to be, and traffic was actually moving. The last time I drove there, I discovered that for only a dollar more, I could valet park, which makes it a lot easier when you have a baby/toddler, and Ryan agreed, so we valet parked the car and got our visitor badges and checked it. We were taken back to a room right away, and asked a few questions by Dr. Gaebler's nurse. After she left in came two residents, who proceeded to ask us a bunch of odd questions- the weirdest being, is she in school- ummm, you just triple checked with us that she was 17 months old, yeah, she's in third grade. Are you kidding me? Then they gave her a generic physical where they checked her reflexes and listened to her heart.

After they left, Juliana started to get squirrely. There was a walker in the room, so we spent the remainder of our waiting time pushing it around the room with her- she was walking while pushing it, she just needed help guiding it. Finally, Dr. Gaebler came into the room... with the 2 residents, and this time with a neurologist as well. It was one big happy family. She asked us to get Juliana down to her diaper so she could see her musculature, and once we did that, Juliana was happy as a clam (I think she would be naked all the time if she had her wish). Both Dr. Gaebler and her neurologist agreed that Juliana has low muscle tone and she wants us to get Juliana some supports for her shoes (which we don't have because Juliana isn't fully walking yet anyways) to help support her ankles as she's walking.

Then, Dr. Gaebler asked us how "doctored-out" we were. I just laughed, because really, what's another doctor at this point? She is referring us to two more doctors- a developmental pediatrician and a geneticist. I don't know if she expected us to fight her on this or if she expected us to be surprised by it, but neither Ryan or I raised an eyebrow. Maybe at this point we are just numb to not getting answers or being told that we need to see another doctor, I don't really know. Either way, I do know that tomorrow I will be spending my plan period on the phone arranging doctor appointments, because I will do whatever I have to do for my daughter. Whatever it takes.

After that, we got to leave. I picked up Noah from Theresa's house, and took him to lunch at Choo Choo Johnny's. He loved it- LOVED IT! If you don't know Noah, he loves trains, and at Choo Choo Johnny's your lunch is delivered to you by a train. We had never been there before, and I didn't know what to expect, but I had seen an ad about it in the paper, and thought it would be a nice place to take Noah for a date. We had a great time, and I know that Noah did too. He even said, "maybe next time, Daddy and sister can come on the Momma-Noah date, too".

Guess Who's Coming For A Visit???

2010-10-01T00:00:00.000-05:00

Commence countdown...

P.S. Holly, Noah is very excited...

Little Prayer Warrior...

2010-09-29T08:30:00.000-05:00

One of Noah's favorite things to do is pray. He reminds us at every meal time that we need to pray (even if everyone isn't sitting at the table). Two Sunday's ago, Dennis issued us the 20/10 challenge. We decided to include Noah in on the challenge since he likes to pray so much, but instead of doing all 20 at a time, we only do a few at each meal. Here's a little sampling of Noah praying at dinner time.

Daddy's Home...

2010-09-28T12:15:00.002-05:00

I don't know who's happier that Ryan's home- Juliana, or the dogs.

Poor Juliana, though, she didn't really stand a chance in the end.

Physical Therapy...

2010-09-27T16:49:00.002-05:00

Here's a little snippet of today's therapy session with Juliana and Miss Meghan (her physical therapist). Yes, she is wearing 1 lb weights (we call them pretty bracelets) on her ankles.

Pretty cool, huh? Thank you, Jesus!

Forgot My Filter Today...

2010-09-22T19:45:00.002-05:00

An unfortunate side effect of my brain injury is that I tend to blurt the first thing that comes to my mind instead of thinking before I speak. The first years after my brain injury, this got me into a lot of hot water. Since then, I've learned to adapt and manage my injury and most people who meet me now don't even know that I've had a traumatic brain injury, which is how I prefer it anyway.

Every now and then I slip up. I leave my filter/coping mechanism at home, or I "lose it" temporarily. Most of the time the people who see my slip ups are family members or close friends, so it's not as embarrassing for me. I didn't sleep well last night, and this morning I couldn't get my brain "jump started". I felt confused most of the morning and that feeling frustrates me a lot. It's a reminder of the first few weeks after my brain injury and it's a reminder that I don't like to have.

Anyway, I'm not going to go into great detail of what happened, but in a nutshell, a co-worker and close friend of mine mentioned to me a comment that another person had made concerning my character as well as the character of some of the other people I work with. It was 1) not nice & 2) not true. She wanted to let me know what was being said about me so I could put a stop to it. She knew that I had been nothing but nice and helpful to the person who was saying untrue things about me and knows what this person is really like (she has others fooled). This was the last straw and I saw "red" and exploded "crazy Jenna" in the office, thinking it was just the 2 of us in there.

I'm definitely not proud of my actions or the things I said. I know that once "crazy Jenna" was done with her explosion she felt better... until I heard the voice of my boss behind me say, "hey, can I get behind you?" Then, I was immediately ashamed of myself and embarrassed, because my actions were extremely out of character for myself and I have no idea how much he heard of what I said, especially since my language was fairly colorful. Needless to say, I beat a quick path out of the office in order to get my head back on straight.

So now I need to set things right...and I need to make sure I keep my filter with me. It was definitely a humbling day today.

Eating Strike Over...

2010-09-19T13:00:00.002-05:00

So for the past few weeks, any kind of meal time with Juliana has looked/sounded like this:

In fact, Ryan and I wondered if we would ever have a meal time where someone wasn't crying. Well, last night, this is what dinner time with Juliana looked/sounded like.

Thank you, Jesus, for giving us this gift after the disappointing weigh in we had earlier this week.

My Heart...

2010-09-16T19:41:00.002-05:00

This week has been rough. Noah has reverted to his behavior of right when I returned to work. Every morning has been a battle of tears and mean words from his mouth. The minute I walk through the door at Theresa's to pick them up, he starts to cry and tell me that he's mad at me. To add to all of that, Juliana lost weight- not a lot, but it was still a blow at a time I didn't need. Then, until the time Ryan comes home from work, Noah continues to say mean/hurtful things to me, spending much time in time out.

During Juliana's therapy on Monday, he walked right up to me and slapped me in the face and refused to apologize. He then spent 20 minutes in his room- I kept asking him if he was ready to apologize and he kept telling me no. I know why he's doing it. He's not getting enough attention, and I really don't know how to get him more attention right now. During the summer it was easier, because Juliana would spend a few hours a week at Theresa's house and Noah and I would go out to breakfast and do something special together. Now that I'm back at work, time after work is spent going to Juliana's therapies or doctor's appointments. We do make time on the weekends for special one on one time with Noah, but it's not enough.

Tonight I had planned on going to the Mom Connection meeting. I had missed the first meeting because it was parent's night at school, so I had really been looking forward to it all week. I was all set to go, and then Noah melted down while Ryan was up putting Juliana to bed. He cried begging me not to go, telling me he wanted "Momma, Noah time". What was it he wanted to do? He wanted to eat some goldfish crackers, snuggle on Momma's bed, and watch some tv. How was I supposed to leave? So, we spent the next hour laying on the bed watching tv. Then I got him ready for bed, and he had me read to him about Jesus. While I read to him, he laid his head on my arm. While I really needed the time with some women tonight, I wouldn't have traded this time with Noah for anything.

This One Is A Tear Jerker...

2010-09-15T18:30:00.002-05:00

I'm a fan of the band Sanctus Real. I really enjoy their music. Their lead singer Matt and his wife Sarah had a little boy on September 10th. While Sarah was pregnant, they learned their little boy's heart was underdeveloped. He was born with a heart problem- HLHS. Heart problems are scary to say the least. While Juliana's holes are mostly closed, the enlarged left ventricle is still a concern and is always in the back of my mind. Anyway, I've been following his story on their blog, and I thought I'd share the link. It's a tear jerker, especially when you read about the morning of September 14th. His name is Bowen. If you think of it, say a prayer for their family as well. On a different note, baby Maddie came through her heart surgery well today, and will be recovering in Indianapolis for about 2 weeks.

Less Than A Pound...

2010-09-14T19:57:00.003-05:00

Juliana had her weight check today. 2 weeks ago, she weighed in at 17 lbs 9.1 ounce. Going in, we knew it wouldn't be pretty given the events of last week. As Juliana sat naked on the scale, the nurse and I kept saying, "go up, up, up" and then, "awwwww" as the average light came on, and the weight settled at 17 lbs 8.7 ounces. Part of me wanted to cry because I was angry, and part of me was happy because I was glad that she hadn't lost MORE than that. Honestly, with how active Juliana is, I was surprised she hadn't lost more weight given how little she has been eating.

Ever since my brain injury I have struggled with anger management. After I got both kids in their car seats, I struggled with the urge to punch the side of the van and scream obscenities (yes, the ugly side rears its head). I held back and instead got into the van and turned it on. A song came on the radio and the lyrics caught my attention, so I picked up my cell phone and called Ryan. He answered right away. I told him her weight. I could hear the disappointment in his voice, but like me he was glad the weight loss wasn't greater. "It is what it is and we can't control it", he said, and he's right. We have 2 weeks to get some weight back on her, and I'm going to try to not stress about it. I just really don't want to have a G-tube put in her.

On a different note, one of my childhood friends has a little girl with Down's Syndrome who is having open heart surgery tomorrow morning. If you could keep them in your prayers I know they would really appreciate it. It certainly makes Juliana's issues seem small knowing they are going through something as major as this.

Good News...

2010-09-13T19:54:00.003-05:00

Over the weekend, some good things happened, that I'd like to share.

1) Ryan finally agreed to join a Journey Group at church. When we lived up in Wheaton, we were in a really great small group (yeah Steve, Jill, Tracy and Eric, I'm talking about you guys). Ryan likes to describe himself as a hermit, so I've been praying that he would join one of the guy groups because, as you all know, we are a bit stressed out with Juliana and I think it would be good if he had people to talk to or do "guy stuff" with. While I am the ultimate tom-boy, I don't fit the bill in all aspects.

2) Juliana finally decided that Ryan and I are right. Going down the steps head first is NOT the correct way, and has settled for going down the steps on her tummy feet first. In fact, she has become so proficient at this, that if you are not paying attention, she may take you out at the ankles. Ryan, Miss Meghan (her physical therapist), Theresa, and I have been working on this one since the end of May, and it has finally happened. I'm going to try to get some video of her racing down the steps and post it soon. Meghan was pretty surprised to see how speedy she was at today's therapy session.

3) Because Juliana has finally decided to do the steps our way, we have finally been able to get rid of the baby gate at the bottom of the steps, and it definitely looks weird after being there for 3+ years. We left the gate at the top of the stairs where the bedrooms are because if Noah ever realizes that he can get out of his big boy bed before we get him in the morning, I don't want to have to worry about him falling down the steps (or whenever Juliana the monkey figures out how to climb out of her crib which I fear may happen soon).

Since I feel like all I am ever doing is complaining/whining, I thought I would take the time to share some good news. Thanks to everyone who have been praying for us. We really appreciate it.

This Little Light Of Mine...

2010-09-12T19:21:00.002-05:00

On Sundays we take two cars to church. This way, after the first service, Ryan can take both kids home and get Juliana down for her nap (if she needs one- she's starting to give up the morning nap) or get her fed, while I serve in the 2's and 3's room during the second service. Noah usually chooses to ride to church in the "man car" with Ryan. The "man car" is Ryan's Honda Civic stick shift. They listen to Veggie Tales on the way to church.

Today, Noah chose to ride in the car with me. He asked to listen to the Veggies on the way to church, so I put them on. Normally, I don't take the time to pay attention to what Veggie Tale song is playing, because they were on all the time this summer, but today I did. The first song was, "If You're Happy and You Know It..." and I noticed Noah was singing along and clapping his hands, stomping his feet, and doing what else the song told him to do. The next song was, "This Little Light Of Mine..." I noticed Noah was singing the words too.

Then he asked me, "let it shine till Jesus comes? When is Jesus coming, Momma?" I told him that I didn't know, that no one knows when Jesus will come. So Noah gave me his standard answer, "Maybe tomorrow, Momma". Then I pulled into a parking spot at church, and Ryan opened Noah's side of the van, and Noah said, "I'm gonna let my light shine, Daddy!"

Have a great week!

Just Plain Tired...

2010-09-09T19:28:00.003-05:00

Recently, Ryan and I saw the movie, "Date Night". It was fairly funny, with a few inappropriate scenes that were not needed as are in most movies these days. There is a scene where Steve Carrell and Tina Fey are driving to the city for their big night, and Steve tells Tina that his"dream girl" is Cindy Lauper or someone like that. Then he asks Tina what her fantasy is. She says something along the lines of "being alone in a hotel room with the quietness, away from everyone". Oh my gosh, that is so me lately! The funny thing is, if I was alone with myself, I wouldn't want to be, but I long to be away from the stress of life right now.

The little girl has been on an eating & drinking "strike" since her last projectile, which was Monday. I think her daily totals have been maybe 10 ounces a day and I'm being very generous with my number here. Maybe a little more, maybe a little less. I don't know how she or her little body functions. She is still a little ball of energy climbing the slide, the ladder to the jungle gym, crawling around, but she doesn't eat or drink. All of us adults are busy freaking out about her calories, and she just looks at us, grins and crawls away or cries when we present her with a cup, bottle, or food.

I called the doctor, just because I need peace of mind. I can visibly see that she is doing alright, but I worry about her internally. I teach anatomy & physiology. I know what can happen to your body if you aren't getting the right nutrition. I also know that I have to bring her in to get her weighed on Tuesday. I know what the GI doctor's thoughts are leading to in October if her weight gain isn't sufficient or has declined. There are things I know that I wish I didn't know.

After I answer all the nurse's questions, I'm told that if she goes down to 3 or less wet diapers a day, I need to bring her in. They are just as baffled as I am and cannot understand why she is not dehydrated and listless. She's a little trooper. A stubborn little trooper. I'd say she gets her stubborness from Ryan, but I think my parents would say she gets some of it from me as well, so I guess we can share in the blame.

Needless to say that I am not sleeping well this week. I haven't really been sleeping well since I went back to work, but this week it has been worse. I started waking up wide awake at 4:30 AM, and I mean wide awake. So, I've started running again in the morning- I had been doing that all summer but when school started up again I stopped. This morning, I woke up wide awake at 2:30 AM (after falling asleep at 10:30 PM). I should have gotten up and done some grading that has been piling up on me, but I laid in bed flipping over and over until I figured it was an okay time for me to go for my run. It's kind of peaceful running in the early morning before anyone else is really up, and I am most definitely not a morning person. It has allowed me to clear my mind and focus on God and where He is leading me.

This Is Not A Drill...

2010-09-06T19:55:00.002-05:00

Juliana goes through spurts of projectiling. A few weeks ago she was switched to a high calorie drink- Boost 1.5, which she actually will drink. The down side to it, is if she drinks more than 4 ounces at a sitting, she projectiles it. Sometimes she projectiles it if she drinks less than 4 ounces. It's more or less a guessing game. Most of the time "main event" occurs at dinner time. We basically have it down to a science now.

Juliana gets this look on her face, and her mouth forms a perfect "0". Ryan and I immediately move items out of the way at the dinner table, and I grab the "chuck bucket"- if there's time. Noah knows to leave the dinner table and go sit on the couch in the living room (he starts to gag & then that's more vomit to clean up). If it's early into the meal, one of us sets up a tv tray and Noah finishes his dinner in the living room- poor kid. The dogs even know what to do by now. They either go into the living room with Noah or they go and sit on the steps if dinner is mostly over. After she finishes, I get her bath ready and Ryan cleans up her high chair. Noah will come up and help with her bath then.

Now, sometimes it happens while Ryan is putting her to bed. Then the role is reversed. I clean up the room and the floor and Ryan gives her the bath if needed.

Today, we got to do both. I'm not going to lie, it's starting to get a little old. It really is. I think we've cleaned up more vomit in Juliana's 16 months than most people have.

A Day Out With Thomas...

2010-09-06T13:19:00.003-05:00

Last year Grandpa Jim got us all tickets to a Day Out With Thomas. Everyone had a great time at it, except Juliana, who was a nightmare. She screamed the the entire time we were there, except when we were riding on Thomas. It didn't help that it was the hottest day in August and Juliana was overheated.

This year, we were bound and determined to not have the "Juliana experience" again, especially since August was heating up again. Ryan came up with a great idea- ice packs. We dressed Juliana in a very light outfit and packed a bunch of ice packs and a towel for the stroller. I know it seems odd to pack your daughter in ice packs, but if you've ever felt Juliana, you've noticed that she runs a bit warmer than most people.

And guess what? EVERYONE had a great time! Juliana even let a nice older man put a tattoo on her arm. Juliana did succeed in melting the ice packs, and she was cooler than the rest of us. She didn't even melt down until right about the time we were going to leave, so it worked out well for us. Noah had an amazing time. I didn't think he could get more excited than he was last year but I was wrong. Plus, since Juliana was in a better mood, we got to tour the train museum, which Noah thought was very cool.

Here are some pictures from our "day out with Thomas". Thanks Frampa!

Rough Morning...

2010-08-27T18:29:00.002-05:00

I mentioned in my previous post that my ray of sunshine has had a rough time transitioning to me going back to work. This morning was the worst so far.

We got to Theresa's house and we were walking up to her house. Noah asked me if his little friend Paxton was there. I looked in and said yes, opened the door and waited for Noah to walk in. I waited. And waited. Juliana's car seat was getting heavy, so I dropped her off inside the door and went back out and asked Noah what was going on. He said he wasn't going to go to Theresa's today. I explained to him why he was going to go to Theresa's. Then I began to count. Noah said, "I don't want you to get to 3". I told him that I didn't want to get to 3 either. I don't often get to 3 (it's happened 1 or 2 times). I got to 3.

I went to Noah and he said, "Okay". I took his hand, because I thought okay meant he was going to go inside. I was wrong. So, I followed through with what I had told him was going to happen and took him back to the van. Then we went into Theresa's house, where he proceeded to wrap his arms and legs around me. Theresa literally had to wrestle him off of me while he kicked and cried. She wrestled him onto the couch and held him there so I could leave. I told him I loved him and he started to scream that he wanted a kiss. Theresa let him give me a kiss and then we went through the wrestling again. I could hear him all the way out to the car screaming, "I want my Momma!".

Nothing like a good dose of working-momma guilt along with a strong willed child to start the day.

Back To Work Again...

2010-08-23T19:32:00.002-05:00

Where did the summer go? I feel like it never really started for me. Last year, I was happy to go back to work, because Juliana was so difficult with her constant screaming (I know, I'm horrible, go ahead and judge me). Then, we started seeing specialists and I realized she wasn't just a difficult baby and I wasn't a bad mom, she actually had problems, and I wanted to be home... well, part of me did. Part of me was happy to be occupied with my job so that I wasn't constantly worrying about whether or not she had eaten. Then, when I went to see my migraine doctor and she said my stress level and blood pressure were so high she worried about me having a stroke, I was thankful to be at work and not at home because I know it would have been that much higher.

This past Thursday was our first institute day. It started with tears. Noah was on the potty before we left to go to Theresa's. He kept saying he didn't want to go to Theresa's. That he would stay home with the dogs because he was a big boy. That he wanted mama to stay home and play with him all day just like we had all summer. I started to cry. As soon as I started to cry, Noah stopped crying and said, "Momma, stop crying. I want to go Theresa's house. I have fun there. It's okay. We go now." Which of course made me cry even more. When i picked them up at the end of the day, both kids were fine (of course).

On Friday, I literally had to pull Noah kicking and screaming out of his bed (I'm not kidding- he kicked me in the stomach twice and I almost dropped him) to get him up. Fortunately our institute day started at 8, so it was okay that this battle was taking up a large amount of time. After he kicked me, I called my mom. My mom is usually magical to Noah, and can usually talk him down from his naughtiness. Not that day. When I gave him the phone to talk to grandma, he closed it and threw it. Well, at that point I had had it with my little ray of sunshine. I put him on the couch and pulled off his shirt. Noah immediately began to sob and told me he was sorry. He cried so hard he almost threw up. I held him until he calmed down and we talked about how momma wanted to stay home too but had to go back to work so that we could use momma's insurance for Juliana to see all her special doctors and therapists and so Noah could see his special eye doctor and have glasses. After that he asked if we could call "framma" so that he could tell her he was sorry, and we did. Then, I dropped them off at Theresa's...

And went to school with a huge dose of working mom's guilt.

I Blame Jaime & Bill...

2010-08-18T18:09:00.003-05:00

Rori and Liam taught Noah how to do this:

Watching Noah, Juliana learned how to do this:

Now if we track back through what I have typed, the only question that needs to be asked and answered is this: who taught Rori and Liam how to climb a slide? The answer is found in the title of this post.

Nuff said.

Visitors From The Southwest...

2010-08-17T20:38:00.003-05:00

Two weeks ago, we had special visitors from the southwest. Grandma Johnda, Grandpa John, and Great-Auntie Diane all drove up from Arizona to spend some time with us. We were also visited by Auntie Candise and cousins JJ, Anna, and Sammy- but I'll do a separate post on them. We had a nice time visiting with them, and everyone was taken with the little girl and all she has accomplished with Early Intervention. Here are some glimpses of our week...

On This Day 11 Years Ago...

2010-08-14T03:00:00.000-05:00

Once upon a time, there was a boy named Ryan and a girl named Jenna. They met at Bethel College and fell in love. 11 years ago on this exact day, I married my soulmate. Happy Anniversary, Ryan! I love you more than I did on the day we were married.