Friday, March 30, 2012

It's (Kind of) Good News! :)

The alarm went off bright and early this early in fact, it wasn't even bright at all! 4:20 we rolled out of bed and got going for the day in Des Moines for Claire's EEG. One of the instructions that we had received was that it was VERY important for us to sleep deprive her last night and today. They want them to sleep for the test since it's so important for them to hold still. So, Little Miss Thang thought she was SOO cool last night that she got to stay up late! :) Big Sister was NOT happy about that one in the least, and Claire was LOVING it! Little stinker! :) Basically, we had to keep her up 2 hrs past her bedtime last night and then wake her up 2 hours before her normal wake up time this morning.  We had to be at the hospital at 7, so we got her up a little before 5, so we could be on the road and going by 5. She did great and was very much looking forward to her "Mommy and Daddy and Claire Day"! Grandma Harbaugh brought her a bottle of Root Beer to drink on the way there and oh my did she think that was pretty awesome too! Mommy doesn't allow much pop-she's the only one of my kids that likes it at all-and ESPECIALLY not for breakfast, so that was a REALLY special treat. Root beer and cake donut with chocolate frosting and sprinkles...breakfast of champions, I tell ya! :) Oh well, she was happy and that's what was important today.
Got to the hospital right on time, and actually had to wait a bit, but we did fine. I could tell she was a little apprehensive about the EEG wires, etc, but she laid on the bed like such a big girl, watching cartoons like it was an everyday occurance that someone was drawing on her head, and then "putting stickers all over my head, so I look silly Mommy!". She was a champ-I couldn't believe it. She didn't fuss or anything-she really did great.  I was proud of her. After she was all wired up, the wound her head in gauze to keep things in place.  That kind of made my stomach drop when I saw her-she looked like she had a major head wound or something! But then, she looked at me and grinned and "yep...still my little Claire Bear!" :) The tech told us we could lay on the bed by her, and she said she wanted her daddy, so Sam climbed up on the skinny little bed and laid by her.  They looked so cute. The lady said the test would take 65 minutes and that they needed her to go to sleep b/c they had to have at least 15 minutes where she didn't move. She turned off the lights and turned on a white noise machine and she left the room.  She had pointed a little video camera at her and told Sam to just raise his hand if we needed anything. I could see Claire was kind of struggling a little-very tired but not really feeling comfortable enough to settle down to sleep. I was sitting in a rocking chair watching her, watching those little lines on the computer screen, seeing her sweet little head wrapped in gauze as she sucked her thumb and "scratched" her blanky, wishing like everything that she didn't have to do this-wishing that there was some way that I could take her place, because I would-in a heartbeat. I just closed my eyes and prayed "Lord, I know this has to be so confusing for her. Please Lord, please, just let her fall asleep.  It would make this so much easier and we could know that we have an accurate test if she would just fall asleep and sleep peacefully. Please Lord." I opened my eyes, and would you believe, she was sound asleep, resting very comfortably-not even sucking her thumb she was so sound asleep. "Thank you Lord. Amen." I was SO tired in that dark room, white noise going, kid and hubby sleeping, that I grabbed an extra sheet out of the little closet thing, spread it on the floor, grabbed Sam's jacket so it wasn't so cold, and took a little nap myself! Pretty sure I made it thru the day because of that little nap.
When the test was over, they had to do a strobe light test since sometimes that can trigger them. Claire was awake but pretty sleepy, so she just kept her eyes closed for that part and she did great. Then we were done! Time to take all the gauze and "stickers" off. She winced a little when the lady was taking all the tape and stuff off her hair-which HAD to hurt, but she never cried! I couldn't believe it! Actually, yes I can. She is one tough girl! Not much, pain-wise, makes her cry. She's a tough little cookie that's for sure. The tech told her she could pick out a sticker, so we found a princess one and a snowman one that she liked. I thought that was good, but she was kept looking thru them, so I asked what she was looking for and she said that she wanted to find another princess one for Ellie, so the tech LOADED her up with stickers for her and her siblings. No joke, I bet she had 15 stickers-but she was pumped. :) She gave them to them too! It was cute-she was so excited to get home and show Ellie her "bracelet" (her ID band) and give the kids their stickers.  I love it when they share and be nice to each other! :)
After the test, we had a little while before the appointment with Dr. Narawong, the neurologist, so we just kind of wandered. We walked around, went to the gift shop and bought 10 little Tootsie Rolls since they were only 2 cents each, walked a little more, and happened upon a patient library! That's our kind of place, man! :) Daddy grabbed a magazine and a comfy chair, and Claire "read" some books to me-her newest favorite thing to do. We did some puzzles, played with some blocks, read some more, played with Legos, and by that time, it was time to go!
By the time we got to the Neurology clinic, I knew she was getting tired.  She insisted that she needed about 85 thousand drinks from the drinking fountain, and had to go potty constantly. She was LOVING having Mommy and Daddy all to herself! :) She was starting to get a little wound up, but luckily the exam rooms were really big, so we played a Memory game on the Kindle and everytime she got a match she had to run to the door and back. Then we played the Freeze Dance song for her to show Daddy her mad dancing skills :), and another game of Memory/Run Some Laps!  Dr. Narawong had to look at her EEG before she could see us, so that's why it took a bit.  Plus, when you're 3 and COMPLETELY out of schedule/very tired/center of attention/cooped up all morning, attention spans are quite short, so none of my ideas lasted more than a few minutes, but we managed just fine.
I really liked Dr. Narawong. She initially said that Claire's EEG looked good. Then she asked us a bunch of questions, examined Claire and said she wanted to go have another look at the test. When she came back, she said that she HAD found a small abnormality. I have no idea what that means. If you don't know (as I didn't before all this happened), an EEG records brain waves or something like that. No pictures of the brain or anything like that-just wavy lines. Anyway, she didn't seem too wound up about it, but did say that she wanted Claire to have an MRI just to make sure. Thankfully, she did say that we could have that done her in Waterloo, so that will make life MUCH easier not having to drive there again. She basically said that it could have been an idiopathic seziure, meaning they don't know why they happen! She said that Claire has about a 60% chance of having another one-up just a bit from the normal 50-50 chance because of the slight abnormality. She might be a little more prone to them with high fevers, etc also. But, she's not on meds, she looks great, and we don't need to go back unless we think we need to. She did call a perscription in for us for a drug that could stop a seizure that won't stop on it's own. She said that a short seizure like Claire had, while very scary, doesn't really do harm to the brain.  However, sometimes a seizure won't just taper off like Claire's did, and if they last 30 minutes or so (HOLY SMOKES...30 MINUTES!!! I would be FREAKING OUT!!! Anyhoo...) they can cause brain damage. So basically, if she has a seizure that doesn't end in 3 minutes or less, we can give this to her to stop the seizure. Definitely will be glad to have that around.  Hopefully I never have to use it, but it will be nice to have just in case.  She also said that in cases like Claire's, even if she does have more seizures, she will likely just grow out of it. That was a relief to me, because I would HATE for her to have to deal with this her entire life. We just have to watch her, no swimming without direct supervision since she could have one and drown, things like that. She also told us what to do if Claire would have another, so I feel a little more prepared and I know that I would be a little calmer too.
Now we just wait for the MRI to get scheduled and go from there. I'm not freaking out like I was with Kai, and didn't even get a major migraine. I have a dull headache, but that could be from lack of sleep, etc too. It was nice actually. We were home by 4ish, and just spent the evening relaxing and playing with the kids.  Ellie and Darren are playing t-ball this summer, so we played a little baseball and got out Kai's bubble mower that we got him for his birthday and gave to him a little early! :) He didn't get to play with it much, but his big sister sure had a blast with it! :) Frozen pizza for supper, and an early bedtime for everyone.  My poor husband has been working late this week every night, so he was SHOT! He was in bed, asleep by 8:00, along with both my boys. The girls were pretty happy to read books in bed and play with all the junk that's piled on their bed, but it's pretty quiet in there now, so everyone is sleeping. As a momma, that's a pretty good feeling. Even though it's been a crazy busy and stressful day, its ended well. My babies are happy, content, warm, and sleeping. My hubby is getting some much needed rest.  My house is clean-thank you SOOO much Mom and Rachel!!!!!! Even the laundry is at a manageable level. :) As I sit here (rocking of course!), I just feel content. And I know why. There are lots of people praying for us today, and I KNOW that's why I have to peace that I have. It's not to say that I don't worry about Claire because I do, very much. However, I know that we have such a wonderful WONDERFUL support system around us-not just the family and friends that always just step up without question when we need them, but the prayers that are ascending on our behalf. We are so thankful for all of them-for all of YOU!
And now, this tired Momma is going to do what the rest of the clan is doing...get some much needed rest! After I rock just a LITTLE more of course...... :)

LOL! Just had to add this-One of the instructions Dr. Narawong gave us was that she should wear a bike helmet. After she left, Claire looked at me and said "Does that mean I have to wear a helmet when I ride my trike down the front steps Mom?" Heavenly days...that GIRL! In case you don't know-the other day she about gave me a heart failure when she rode her trike down the steps in front of our house. All I heard was a scream and see her laying on the sidewalk.  She was fine, but SERIOUSLY! I told her that there would be no more riding any bikes down any steps-Mommy's heart can't handle that! She just looked at me, grinned her big Claire Bear grin that makes her eyes almost sparkle and said "Ok, Mommy!" Turkey! She makes me laugh. :)

Wednesday, March 21, 2012

Answer to Prayers!!!

Again, I am in tears...this time in sheer relief.  Just got a call from Blank Children's Hospital in Des Moines.  The lady that called said "I know you live kind of far away, but could you be here next Friday at 7AM?" I believe my response was something along the line of "I can be there at 5 AM if I need to be!". I honestly cannot believe it.  I KNOW that it's only the power of prayer that we got our appt this fast. It's such a relief to know that we can get some answers soon and that I don't have to wait until October.  Thank you all so much for your prayers-please keep it up!

Update on My Little Claire Bear!

Why do I always feel like the only thing I post on here is updates on my kids health? Mercy sakes!
For those of you that don't know, I will start from the top!
Yesterday (Monday) Darren had a dr appt in the morning at 9 so we took El to school and the other 3 kids and I headed out for a day of shopping and running errands.  We came home about the time Ellie was done with school, so picked her up and then realized that I had to replace the light bulb in my kitchen, but it would have been too easy had it just been a regular light bulb!  SO we headed to Home Depot  and a couple other places and grabbed some Applebees for supper.  Sam was in Dallas TX for work, so we just decided to bring supper home and eat it there and have a "family movie night" as my kids love to call it. We had gotten off the interstate and were heading into Dike when Claire made a really wierd sound in the backseat. I actually commented something along the line of "knock it off, Claire-that noise freaks me out!" I looked in the rearview mirror and immediately yanked the car off the road. I jumped out and opened her door. She was twitching all over, her head was thrashing around, her eyes were rolling around in her head, and she was just making these really really wierd noises.  Her lips started turning blue and then her face. I thought she was choking, so I tried to pry her mouth open, but her teeth were absolutely clamped shut.  I honestly thought she was going to die. Do you know how terrifyingly scary it is to think your child is going to die and there isn't a thing you can do but watch it happen? I remember turning around and in a voice that I didn't even recognize as my own, scream "SOMEONE HELP ME!!!" I was trying to call 911 but it was like my fingers couldn't even move to unlock my phone. My friend Zach lives in the house that I happened to be close to and he heard me scream and came running out to help.  Zach, for some really wierd reason, I noticed that you didn't have any shoes on, so I owe you some new socks! :) By that time, I was on the phone with 911.  While I was (attempting to) talk to the dispatcher, another vehicle pulled over, and a lady wearing scrubs jumped out of the car and asked what was going on.  I remember telling her that Claire wasn't breathing and she went to work, rubbing her chest and talking to her.  She losened her buckles since Claire was still in her carseat. She tried to get me to tell her Claire's name and I couldn't even talk. She asked Darren what his little sister's name was and I remember his eyes being absolutely huge and he looked right at her and said "Her name is ClaireB". It makes me cry to even type that.  He was so brave.  By this time, I was absolutely hysterical-honestly and truly hysterical.  Ellie was sobbing in the backseat and I couldn't even talk to her to calm her down. Looking back, it's almost embarrassing. I know I am far from the only one, but you never think that in that situation that you are going to completely fall apart, especially in front of all the other kids. I know that was just as, if not more, scary than what was happening with Claire-seeing your mommy fall completely apart and be hysterical is enough to freak out any kid!
By this time, there were all sorts of first responders showing up.  You would think that since they are all volunteers it would take a bit, but not at all-it was AMAZING how fast they showed up! I will forever be grateful, from the very bottom of  my heart, to all of those people, many of whom I don't even know, for dropping what they were doing at a moments notice and rushing to help my little girl. They loaded my baby girl in the ambulance and one of the EMTs told me that she was driving me to the hospital. I called my friend Kelli, who lives in Dike, to see if she could take my other kids.  I will never forget her response "I can't Tiff-I'm sick and I don't want to make your kids sick.  Tyler (her husband) can you go over to be with Tiff's kids?" I could hear him say "Sure. Why?"  That, my friends, is what true friendship is all about.  He agreed w/o even knowing why. We weren't to my house for 2 seconds when he pulled up and took the other kids into the house.  I think I gave him some instructions for Kai, but not sure if they made any sense or not. When I lifted Darren out of the car to send him in the house, my poor little boy looked at me and just started sobbing with his head in my middle.  That was the first time he cried, and it absolutely ripped my heart out.  I told him that he could play Wii with Tyler and that seemed to cheer him up, so I am glad I was able to at least do that for him.
We got to the hospital right after the ambulance, and I will never forget running into the ER.  I saw them lift her out of the ambulance and she was crying.  Her favorite Hawkeye shirt was in tatters from when they had to cut it en route to the hospital.  I actually had the foresight, thankfully, to send her blanky along with her, so I was glad she had that.
My poor hubby was in Texas at the time, and it was awful storms there.  He went to the airport to see about getting a flight home, but it was not to be. Turns out that all the flights after 6pm were canceled due to the storms so there was no way he could get home. We just kept texting and talking on the phone, and it all worked out ok.
Long story short, we went to the ER, they did a blood test and a urine test and it all came back fine, so they said we could go home!  By this time, Claire had covered her bare tummy with all the stickers that she had been given, and was thinking that she was pretty cool since she got to have some pop!  We don't do a lot of pop at our house, and esp for the kids, so that was a REAL treat.  Someone commented to me that if she would have asked for a pony at that point, I probably would have given it to her and it's absolutely true! The doctor just said to call our family doctor in the morning and go from there.  I went home thinking that was the end of it. Of course that would be too easy. Our doctor called last night and told Sam that she is referring Claire to a pediatric neurologist since she had absolutely no symptoms prior to the seziure-no fevers, no sickness, nothing. I cried. I told Sam that I just don't want to do this again.  I don't want to do the headaches, the waiting, the stress...I don't want to do ANY of it again.  It's horrible-I am so paranoid now.  I hate having her out of my sight, afraid that she might have another seziure and I won't be around. I'm scared to let her go outside to ride her bike, afraid that she might have a seziure and fall off and hit her head on the cement. Yesterday in the car when we went to go get Sam at the airport, every time she made any noise at all, my heart lurched and no joke, I bet I checked her in my rearview mirror about every 5 seconds. I am NOT that type of person, so it drives me crazy, but I can't help it.
Talked to the referral person at our drs office this morning and she informed me that the wait for an appt in Iowa City was pretty long. She didn't know how long, so I called Iowa City myself and was informed that it was approximately October before we would get one and it would probably be several months before they would even let me know when our appt was. I called Des Moines, and theirs was August. Again, I cried.  Our only hope for an earlier appt would be if our dr would call directly to one of their drs.  I left a msg for her in hopes that she would do that, but we will see what happens.
Thank you to everyone for your kind comments of encouragement and all of the prayers.  We all appreciate them so much and please keep praying for my baby girl. Thanks~