Tuesday, April 17, 2012
Celiac?
Today Robbie went to the Dr to see if we could get him tested for celiac disease, a gluten allergy. In doing more research on benign congenital hypotonia I came across several people who had linked the two in their children. When they put their kids on a gluten free diet the hypotonia improved. The results varied from family to family from it being practically gone to mild improvement. This was not a controlled study but stories from individual families that I happened across. Since there are several people with celiac in my family tree I figured we had better get him tested! The Dr also ordered an allergy profile to be run for other food and environmental allergies. They had to take a few vials but he was a trooper and did really well. Only a little bit of crying and hysteria when he was poked. We hope to have the results by the end of the week but we all know how that can go! The Dr did warn us that the test will only show an allergy to it, not a sensitivity or intolerance. She suggested that even if the results come back negative that we do a 6 month trial anyway just to see. Please cover this in prayer. I will let you know the results when we find out.
Sunday, April 15, 2012
New Direction
Hi friends and family!
Yes, this once was “Everything Robbie.” Fortunately Robbie no longer has a ton of complicated
and long information to relate so we decided to change this into a family blog. I guess I’ll start out with updates on all of us and then post as varying things arise.
Let’s start with the head of the home, Chet. This way you have to read all about us to get to Henry ;) Chet is still working as a software engineer for Clear Village in Orlando. The company builds software for local governments. At home he is continuing to work on modifying the remote control lawnmower he built. He is an amazing father and husband!
Now on to me, Mandy. I am still loving life as a homemaker, wife and mommy! When I’m not busy with the little boys I’m cleaning or working on my latest project. Currently that is an entertainment center that I’m up cycling to something fun for the boys (you will what when
I’m done).
Robbie is now a very happy and rambunctious two year old. For those who don’t know, he has a muscle disorder called hypotonia (don’t ask, look it up). He recently gained enough strength to climb and enjoys doing so all the time on everything! At the last Physical Therapy session his PT
said she wants to do her evaluation next time because he may be ready to stop coming to play – YAY! Feeding therapy isn’t going so well though. Robbie will now be wearing his shoes all the time (excepting nap, bath and bed time). His feet are very flat and so his toes go outward. He will wear special inserts in his shoes and as his feet grow around the inserts they will fix themselves.
Our newest little edition Henry is doing very well! When he was about 2 weeks old we figured out he had some food intolerances, I quickly changed my diet. As the weeks flew by I cut out more and more. He improved a lot but still wasn’t doing as well as we thought he should be. Most afternoons he spent very uncomfortable and it wasn’t unusual for him to be screaming in pain at night. Last weekend we decided to try out a special formula for 4 days. He is a different baby! So happy and not in any pain!!! Nursing is very difficult for me to give up but seeing him do SO well I just can’t imagine making him go back to it. Henry is now napping well and sleeping through the night! Now that is exciting :)
Yes, this once was “Everything Robbie.” Fortunately Robbie no longer has a ton of complicated
and long information to relate so we decided to change this into a family blog. I guess I’ll start out with updates on all of us and then post as varying things arise.
Let’s start with the head of the home, Chet. This way you have to read all about us to get to Henry ;) Chet is still working as a software engineer for Clear Village in Orlando. The company builds software for local governments. At home he is continuing to work on modifying the remote control lawnmower he built. He is an amazing father and husband!
Now on to me, Mandy. I am still loving life as a homemaker, wife and mommy! When I’m not busy with the little boys I’m cleaning or working on my latest project. Currently that is an entertainment center that I’m up cycling to something fun for the boys (you will what when
I’m done).
Robbie is now a very happy and rambunctious two year old. For those who don’t know, he has a muscle disorder called hypotonia (don’t ask, look it up). He recently gained enough strength to climb and enjoys doing so all the time on everything! At the last Physical Therapy session his PT
said she wants to do her evaluation next time because he may be ready to stop coming to play – YAY! Feeding therapy isn’t going so well though. Robbie will now be wearing his shoes all the time (excepting nap, bath and bed time). His feet are very flat and so his toes go outward. He will wear special inserts in his shoes and as his feet grow around the inserts they will fix themselves.
Our newest little edition Henry is doing very well! When he was about 2 weeks old we figured out he had some food intolerances, I quickly changed my diet. As the weeks flew by I cut out more and more. He improved a lot but still wasn’t doing as well as we thought he should be. Most afternoons he spent very uncomfortable and it wasn’t unusual for him to be screaming in pain at night. Last weekend we decided to try out a special formula for 4 days. He is a different baby! So happy and not in any pain!!! Nursing is very difficult for me to give up but seeing him do SO well I just can’t imagine making him go back to it. Henry is now napping well and sleeping through the night! Now that is exciting :)
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