Last year we had an MRI of Brody's brain done and many tests ran. He was having seizures which were horrific and he lost a lot of things we worked so hard on him learning. He already had a harder time learning because of his brain bleeds at birth but with the seizures he had, he has never been the same. The MRI showed a lot of brain loss. The hardest question was asking if he would be a functioning adult and the answer wasn't what I was looking for which was "we hope so". A couple weeks ago we took him to his retina specialist because it was time for his yearly appointment and because I was noticing some vision changes. She said his nerves were pale in color in the retina due to his brain. It's really amazing that the entire body is affected by the brain- even things you wouldn't think.
Brody on paper and Brody you meet are two very different little boys. Brody on paper wouldn't be walking or talking. If you know Brody, you know he is a very sweet, social little guy. That is the number one reason the top Neurologist at Texas Children's can't figure out what is going on or what we should really do. Last year when we were doing all the testing, we also tested in intelligence. There were great delays but there was also another issue with attention issues due to his brain "injury". That means he doesn't have ADHD or even a diagnosis of ADD but he does have attention issues due to the parts of the brain that have been damaged by the bilateral grade III bleeds he had at birth. How this relates to real life is, we can have a conversation about going somewhere for lunch and he can tell you where we are going and be super excited to go, without skipping a beat, we can immediately ask him where we are going for lunch and he has NO CLUE where we are going. He will say "um" a million times. It's like the wheels are turning but the information isn't getting to him. This greatly affects his learning. He has zero behavior issues so he's always been passed right along as he is doing great when he really isn't learning a lot.
He always recognizes people he knows, greats them so excitedly, you know he loves them, and he will talk. He really is the sweetest little boy in the whole wide world! He can find his glasses, put them on the correct way, he can now put his shoes on, he can dress himself most of the time, and he does really well feeding himself. The part of his brain that says when you are full or not thirsty anymore is also affected. He doesn't know when to stop drinking or eating and with his stomach issues, we have to watch very closely at everything he eats and drinks or his stomach will blow up, he won't be able to breathe without it being extremely labored and him turning blue and purple, and neurologically he isn't with us when he is having these issues. This year I hope to learn more about his stomach issues. He isn't growing which is a very big issues and relates back to his brain.
This isn't even scratching the surface but since we know he won't be potty trained by age 4 or anywhere near that, our insurance will start covering his diapers. We've also ordered very high calorie Pediasure to see if we can get weight on him without causing the episodes I explained above. This is nothing we are happy about. It really sucks quite honestly but I realize things could be much worse and there are kids that have more problems. I've always been extremely goal oriented with them and that will not change. I have the highest standards for them because I want him to be socially accepted, I want him to play T ball, I want him to be successful in school, and in life. I'd rather be known as a hard parent than one who doesn't care about their kid any day.
I'm not sure what our goals are for Brody right now. I've been on the phone for hours trying to get evaluations set up and after all that is done, Ricky and I will have a really hard decision to make. We take none of this lightly. Actually it seem like the weight of the world at times. We will be starting therapy back and I hope to keep him off a feeding tube.
Also, they had a dentist appointment today and I finally feel like we have found the perfect dentist for them! Everyone had healthy teeth but the dentist told us to start a college fund and a fund for braces because all three will for sure need them. Brody and Madi will need an expander device installed at the roof of their mouths to help widen the top so there isn't so much crowding. You can literally see the tube indention at the roof of Brody's mouth from the breathing tube he had for so many months when he was born. I'm waiting on them to call me back but they want to get Brody's done sooner rather than later and Madi's done in about 6 months.
Anyway, we've always needed big prayers for Brody and it hasn't changed. We have one Healer and we do BELIEVE.
XOXO
KP
Here are a few pics :)
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| These girls are ALL GIRL and handsome Brody doing his daily eye patching |
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| I think Truette is going to come out 20 pounds |
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| I could watch them sleep for hours! |
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| Mommy and Madi didn't know the glove goes on the other hand.. oops! |
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| Daddy teaching Madi how to hit the ball |
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| The day we signed her up for T ball. We had to make her where this outfit. She immediately changed into a dress when we got home. |
