Monday, September 27, 2010

Spirit


Maggie earned the "Spirit stick" with her little cheerleading squad today! The girl that is the "Spirit Leader" is supposed to "call" the cheers. Well, since she earned the spirit stick, tonight at the game, she called the cheers. You sometimes have to listen for the "READY!" - she did fantastic! She is the youngest one so far that has had the spirit stick... a 4th grader or higher has had it so far. Here are a few videos of our little cheerleader at tonight's game.






Saturday, September 25, 2010

Brain Sparing Results

The results are in. (Some of them anyway... the ones that were out-standing). We still have more tests, but for everything that has been done... we have results and answers.

Last weekend, my parents were gracious enough to watch our kiddos for us to go to an Astros game in celebration of Corbett's birthday. About four years ago, we went to a game right around the same time - to celebrate and to get our minds off of the news we'd just heard about our Twin B. I'm not really going to relive that time, but I will note one phrase that was constantly used... "If Twin B survives, something called brain and heart sparing will take place." Remember... he wasn't receiving all blood flow through his umbilical cord - therefore, all that he was receiving was going straight to his brain and heart! Isn't God wonderful - that he can so meticulously make that happen!?

The results of his MRI this last week showed us that this truly did happen. Whit's brain was spared. There are no visual anomalies in his brain that are causing his neurological deficits. Now, that's not to say there are none there. Remember, God did create the neurological system in a very complex way - meaning that some of the best neurological doctors in the world can't figure out some things! So - all that to say - we are grateful that his brain was spared. It doesn't mean that he does not have CP. His neurological developmental pediatrician and his nurse were sure to say "that doesn't mean he's clear of that diagnosis." (But, in my mind... it means that it doesn't severely affect the brain!) :)

One thing that did show up in the MRI was an enlarged spinal column as it enters the brain. So, another MRI will be done in late October to scan the entire nervous system and his spinal cord. He has excess fluid there, and his Dr. wants to check that out.

I also visited with the psychologist that did his assessment back in August. Once more, brain sparing was evident. Developmentally, he does show mild delays - but nothing too significant. Fine motor skills were most affected, but he is making nice progress in that area. Cognitive development was his strongest point... brain... WOW! Several domains in behavioral abilities were also assessed. He did show some areas of concern, and we'll just monitor and track those closely where social aspects and stimulation are concerned.

Overall, we are very pleased with the results. Yes, there are delays and areas to work on... but, we just continue with the therapies that we already have in place - and monitor his progress.


Monday, September 13, 2010

Precious Moments

Precious Moment #1

Setting the Stage:
  • For those that don't know... Whit takes "grow juice"... a nightly injection of human growth hormone to enhance his ability to reach his genetic potential. This is a long-term commitment.
  • Whit has been having a successful go at potty training.
The Precious Moment:
  • "Mommy, now that I tee-tee on the potty - I'm BIG!! Now, I don't need my grow juice!"



Precious Moment #2

Setting the stage:
  • At the end of the school day, my three angels wait together for me to come through the car-line. Last Friday, Whit didn't go to school because of his MRI, so just Maggie and Chap were meeting in the car-line.
The Precious Moment: (that Maggie and Chap told me about)
  • Chap is sitting in the car-line, waiting patiently for Maggie to come. He sees Maggie from across the entrance of the school - grins really big, and waves his hand at her. She grins, waves back, and goes to sit with him. I asked him if he was so excited when he saw her coming! He said, "Yes, because I love Maggie!"

Precious Moment # 3

Setting the stage:
  • Maggie is named after my great-grandmother... Maggie Whittington. She passed away when I was 9, and was such a wonderful person!
  • Maggie's Bible verse for last week was, 'Love the Lord your God with all your heart, with all your mind, and with all of your soul. Matthew 22:37'
Precious Moment:
  • We were sitting, eating supper last week, and Maggie asked. "Mom, what is your soul?" I swallowed deep and wondered how in the world to explain this to a 6-year old. I mustered up an answer. In part of my answer, I told her it was a part of you that goes to Heaven. After a little thought - she replied - "When I get to heaven, I'm going to run and find the other Maggie!"




Wednesday, September 8, 2010

I know

I know... it's been a while since I've posted an update.

So, I thought I'd update you on a few things so "you'd know!"

I'll start with Maggie. Her first grade year has gotten off to a great start, and she is loving first grade! She loves her teacher, and she has only said good things about it so far. She is doing cheerleading with her school, and after taking some time to get comfortable, she's really enjoying that now, too. We went to our first game last night, and spectators Ikie and Bibs came to watch. She showed off her cartwheels several times, and had a great time! She's pretty worn out by the end of the day, but she's doing great!!

Chap has had a great start to school, too! He's had a few teary mornings, but for the most part - he's swallowed deep and gone in like a big boy! His teacher has made several comments on how good he is, and how impressed she is with him. He is always soooo proud of his work in his folder he brings home each day, and talks about his day non-stop on our drive home! His coloring has really improved already, and he told me last week.... "Mom, R-E-D spells red! And I also saw 'white' on the wall. I know it's white, because it's like WHIT with an E!" He's doing amazingly!

Whit is doing awesome, too. In the last post, our plan was for him to go to an in-home daycare. Well, after the first day of school, things changed a little. Eagle Heights, where Maggie and Chap were going, said that he could try to go there even though he's not fully potty trained. And, he's doing his best to help that situation out, too! He's about 70% potty trained - with about 1 accident a day, but he's really doing good! His teacher is pleased with his progress, too. I had a visit with her this morning, and she commented on what a good job he's doing - especially with pottying. We had his endocrinology appointment today, and Corbett and I are quite disheartened with how it went. Things with Whit were good. He'd fallen off of his velocity curve a bit, and she was concerned with that so she requested some bloodwork. With height, he's in the 4th percentile at 3 ft. 1 inch, but he's still less than the 0% for weight. He weighed 26 lbs. The doctor didn't seem to be on the same page with us, and she didn't really address any of our questions we had for her. She did slightly increase his dosage of growth hormone. He also has an MRI scheduled for this Friday, September 10th at TCH. This was one of the tests ordered by his developmental neurologist to either rule in or rule out cerebral palsy, and the severity of it. He will have to be sedated for it.

So, our school year has gotten off to a busy, but successful (aside from doctor appointments :) time. Amidst all of the school-going, the boys have had a little time for fun! I'm not sure which one had more fun on this tractor... the little boys, or the big boy!