Kyle's NICU Story in Pictures

Thursday, November 12, 2009

Update on EEG

I got a phone call from Kyle's Neurologist the other night. He explained a little bit what the results of Kyle's EEG were - we have an appt in December so I am sure we will discuss it more then. The findings of the EEG were abnormal - which in my book isn't so bad b/c we have been told it will always be abnormal - b/c he will be compared to other kids his age and his brian developed 1/2 out of the womb which just plain makes things different. His connections and electrical activity is expected to be different. So that didn't sound so bad. The main finding we discussed was that his background activity was slow and spread out. well to a mom that sounds pretty rough - but Dr. Clark assured me that this statement is referring to the electrical activity in the brain... not kyle's cognitive ability. Well - so does generally slow and spread out electrical activity affect kyle's cognitive ability? Theoretically the answer is yes - it does and it will. the clinical answer is "we shall see". and as of right now - kyle's brain looks immature and kyle looks immature - so that matches. but kyle is progressing in learning and concepts - and so there is not a reason to think (even according to the neurologist!) that this would stop. So I obviously felt much better after speaking to him. Slow is just not the word you want to work with when they are talking about your child's brain!

So here is my take - I don't like the punches that feel like they come out of no where. They are hard to swallow and feel like they knock me back to standing in the NICU. that sickening feeling of not knowing. but here is how I will look at it. Kyle has to fight harder and I will help him. I do believe the Lord is healing him. He will be able to sort shapes and do puzzles - it might just take more work. So work we will do! I will use this as a reminder that Kyle needs to work hard and that means me working hard! I guess as moms we all need that reminder sometimes. Thanks for praying - I could not have a better group of friends that keep me focused during moments of stumbling. I love you all!

Monday, November 9, 2009

EEG Results

I was having a perfectly normal day. Kyle had picture day at school today. I got a call about Kyle's EEG results and they were not what I expected at all. So in my head I start scrambling for a verse that makes it make sense. A scripture that makes it okay or that reminds me that this is not about me or about Kyle. ... ... can't think of one.

I'll keep trying.

obviously I didn't the results we wanted. didn't get the results that I was expecting.

on a positive note - a good reminder to stop slacking on therapy. It is so easy to listen to everyone comment on how "normal" he seems and how their child did that same thing and they are "normal". and I fight all of those thoughts but somehow they do creep in and make me feel okay if I miss one infant massage or one 30 min session or one time wearing ankle weights. Kyle is doing so much more then anyone ever thought he would. I believe he is being healed and is so amazing. He deserves to be fought for!

I should know more details from the doctor in a few days and I'll update more then.

Wednesday, November 4, 2009

October Update

Halloween was too fun. John was out of town and uncle kevin saved the day. Kyle made it to about 7 houses and then uncle kevin took jadon and jack around to the REST OF THE NEIGHBORHOOD! they had a ball! then they spent the rest of the night scaring me with all their masks!

Kyle was a super hero - he learned to say Hero! Jack was a pirate and if you ask him he was a "scary pirate". Jadon is the greatest story..... he wanted to make up his own costume this year. so he saved up his points from stickers (he gets stickers on his chart for his responsibilities and stuff) and he got to buy a mask at walgreens.... it was a creepy michael jackson mask but he thought it was a zombie! so he loved it. he wanted to be something scary this year and dad said yes.... so anyway - I have always been a little judgemental to the kids that come to our door and are half way dressed up and just have a mask and some blood running down the neck... they look like they just threw it on to get some candy...... ????..... well jadon very carefully decorated his mask with black and red paint - to look scary and bloody. then he turned some sweat pants inside out to make them black and then the took an old indian shirt he made from his kindergarten thanksgiving day feast and turned it inside out and backwards and put paint on it too. then he wore his mask... he worked so hard and was so creative and detailed. and when I saw how proud he was of what he had made I felt so bad for judging all those sweet little guys who were probably just being creative too! so i learned my lesson this year. all 3 boys looked adorable! when I get my video camera fixed I will post a video and catch up!

kyle is doing so well these last couple of weeks. everyday is a new word or 2. we are up to 2 word sentences and naming objects. "daddy's keys. daddy's room. mommy's car. mommy's lap. " he is learning new things everyday. We are working hard on singing and teaching kyle to say no and making choices. we are still working on leg weights lots and and parallel movements. Kyle has his EEG friday to check for any seizure activity and maturity of brain wave patterns. He qualified (after some long fighting) for another round of RSV shots this year and we have all officially been vaccinated with H1N1!

some pics...

Jack being a "scary" pirate!

Jack enjoying life and ice cream.

Kyle listening to his headphones.

Jadon with his tie - on picture day at school.

Jadon had crazy sock day at school and we must have really talked it up at home b/c Kyle found them after jadon got home, put them on, and ran around saying "crazy sock". (in his own little version of talking!)

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!