Wednesday, December 22, 2010

Parents Of The Year...NOT!

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.

Sunday, December 19, 2010

Happy Birthday, Ryan!

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!

Saturday, December 18, 2010

Running To Your Arms...

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.

Tuesday, December 14, 2010

A Good Visit...

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!

Wednesday, December 8, 2010

It's The Little Things...

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.

Friday, December 3, 2010

Encouragement...

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.

Tuesday, November 30, 2010

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

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

Sunday, November 28, 2010

Baby Jesus, Optimus Prime, & Megatron...

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?

Saturday, November 27, 2010

Counting Calories...

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).

Wednesday, November 24, 2010

Thankful...

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!

Tuesday, November 23, 2010

Visitor...

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.

Friday, November 19, 2010

Meltdown...

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.

Thursday, November 18, 2010

Happy Birthday, Mom!

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!

Sunday, November 14, 2010

So Much To Think About...

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.

Wednesday, November 10, 2010

Saying Goodbye...

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.



Tuesday, November 9, 2010

Tough Day...

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.

Wednesday, November 3, 2010

A Fallen Soldier...

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).

Monday, November 1, 2010

Thank You, Kelly...

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.

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!

Halloween...

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...

Wednesday, September 29, 2010

Little Prayer Warrior...

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.

Tuesday, September 28, 2010

Daddy's Home...

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.

Monday, September 27, 2010

Physical Therapy...

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!

Wednesday, September 22, 2010

Forgot My Filter Today...

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.

Sunday, September 19, 2010

Eating Strike Over...

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.

Thursday, September 16, 2010

My Heart...

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.

Wednesday, September 15, 2010

This One Is A Tear Jerker...

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.

Tuesday, September 14, 2010

Less Than A Pound...

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.

Monday, September 13, 2010

Good News...

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.

Sunday, September 12, 2010

This Little Light Of Mine...

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!

Thursday, September 9, 2010

Just Plain Tired...

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.

Monday, September 6, 2010

This Is Not A Drill...

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.