Thursday, September 22, 2011

Hewitt Update

Okay, I'm trying this again.  I did this from my phone earlier and it didn't publish, so now I will do it from my computer, and I'm guessing the phone one will publish shortly after. :)
Hewitt did fantastic in the hospital.  I was so proud of him, he was happy to sit in that bed and just chill for almost the whole time.  We kept him distracted with movies, a game boy, puzzles, books, board games and some fun visitors! 

Our results so far:  Hewitt is still having seizures.  They are more frequent than we had realized and that was definitely disappointing news. Sitting with him for that much time gave me the opportunity to witness what I had been missing.  And, even though they are still there they are very brief and don't seem to be affecting his cognitive development.  He is having absence and some myoclonic throughout the day and during sleep.  While he sleeps the Dr. said he saw one about every 4 minutes, which shocked me.  But, then on the other hand, it might explain why he is tired a lot and sleeps so hard when he actually sleeps!  We didn't catch a night episode but we concluded that since he isn't falling down we are going to keep his treatment the same.  The Dr. said if he was a teenager having this many they would treat it more aggressively just so he could drive, but at this point, he (and we) are comfortable with how it is as long as things don't get worse and he stays safe from the falls.  His cognitive development seems fine, I tend to be more concerned with his social development and his attention span from time to time.  We are going to try to get another evaluation from the school district.  He hasn't had one since he was 4, so it might be good to see if he has any issues that I'm missing as his teacher.  I don't have a lot of experience in learning issues, so I'm definitely not above seeking help to make sure he doesn't have any!

As a child with epilepsy, Hewitt is at higher risk for early puberty.  We have been aware of this and have been looking for any signs.  Well, he has recently started having body odor pretty strong and asking for deodorant!  I mentioned this to the Dr. and he consulted with an endocrinologist.  That Dr. requested to have a bone age test done on his hand and a couple blood tests to see if he is progressing too quickly.  I really haven't researched this, so I'm not even sure what the course of treatment would be and if it's something they can slow down/stop.  Hopefully I'll get an opportunity to research that while we wait for test results!

We really appreciate the thoughts, prayers and encouragement for Hewitt while he had the testing done this week.  It's been 2 years since he's had anything like this, so I didn't know how he would do.  The amount of adaptability kids have in these situations amazes me at times!  God has equipped him so beautifully for this. 

I will post results when we receive them! And, I have some pics to upload as well!

Much love,

1 comment:

Anonymous said...

It's good to hear the latest with Hew. I know the feeling of relief when "all is well," just to find out that it is worse down the road. God will continue to bring all of you through and make you all better for going through it again. Perhaps read through some of the articles you've formerly wrote, praise God for what you have and even what is better, and get ready in any way you can for what is about to happen. About the best advice I can give as I know that my storms in life are quite different.

I guess having 'pits that smell like crackers doesn't smell too great after all :).