Sunday, October 31, 2010

Special Visitor...

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!


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...

Friday, October 29, 2010

Trying To Stay Positive...

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.

Friday, October 22, 2010

Pep Talk...

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.

Wednesday, October 20, 2010

Forever Running...

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.

Saturday, October 16, 2010

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

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.

Friday, October 15, 2010

Eight Years Ago...

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).

Wednesday, October 13, 2010

Get Outta My Head!

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!

Monday, October 11, 2010

Praying For Peace...

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.

Friday, October 8, 2010

Hey God, Part II...

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?

Wednesday, October 6, 2010

Hey God...

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.

Monday, October 4, 2010

More Doctors...

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".

Friday, October 1, 2010

Guess Who's Coming For A Visit???

Commence countdown...

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