More Matthew Updates

Tuesday is the writing of the IEP day at school (FINALLY!). We did get the Adaptive Phy Ed Teacher in there sooner so the boy doesn't kill himself trying to keep up while waiting for his pacemaker.

Matthew is scheduled for his heart cath on April 8th. Surgery will be scheduled after that based on their findings. Still kind of hoping we can wait until school lets out. But, we know he is going to feel so much better when it's done soooo...kind of wish they would get it done with.

Results are in from Endocrinology...he did fail his growth hormone test which means that he is not making his own and will not grow without growth hormone replacement. That means that after heart surgery, we will begin daily injections of growth hormone until he is done growing. A lot like Isaac's insulin shots only Matthew will only get one a day. I read that you can grow anywhere from 2 to 6 inches in the first year depending on how far behind you are. I can't imagine Matthew growing! The manager at IHOP asked if Isaac - the 2 year old - and Matthew - the 9 year old - were twins. Poor guy! We get that all the time with Noah and Matthew, but now Isaac!?! We have to do this! There are some scary things but there are some great things that can come from this replacement...so we're keeping our fingers crossed - hoping we are doing the right thing.

We did see the Pediatrician for hair loss and he says it seems to just be stress. Hahaha! I laughed and said, Matthew, you're not stressed, are you? I still think it is his thyroid! His last TSH was 4.46, but what do I know?

We had a rough day last week with the hockey tournament happening at school and Matthew not able to participate. It's frustrating because we had to put him on these restrictions because the gym teacher doesn't understand what to do with him apparently. So, I took Matthew out for breakfast (not easy trying to find a fat-free food in a restaurant - but we did pretty good) and then we still got to the school kind of early. We watched the last game and Matthew had so much anxiety about it. He was emotional and it was just hard! His class ended up winning the tournament and they were in the air, screaming and having fun celebrating. It was very hard to have Matthew watching that and not be a part of it! Those are kind of slaps in the face...you're child is not normal and he is hurting because of it. It breaks my heart!

Every now and then, I make the mistake of reading other fellow heart patients blogs. I am absolutely amazed that we have Matthew HERE and doing fairly OK. That so much more could have gone wrong and he is one huge walking miracle! We feel today that his life is very fragile and he relies on so many things to make it keep working...it's scary! But, we know that our Father in Heaven is in control and we trust Him! When we are headed in to surgery it is a whole lot easier to enjoy every moment together because of the WHAT IF SYNDROME I seem to be plagued with!!! We are VERY grateful for the time we have been given and hope there is a LOT more of it!