Thursday, September 16, 2010

BIG updates!

Hello all, we have been working of quite a few changes over the last month with meds for Carson and our family.

First off, Carson's medicines.... we had a blood test a few months ago to check the levels of the medicines in his body. His Tegretol levels were very low, so low they were not doing any good, the Doctors and us decided to wean him off of it completely. Last sunday was our last day on Tegretol. It has been a very good choice for us, we saw no difference in his seizure activity due to the lack of Tegretol and we have seen a drop in his weight! Carson has not lost weight in a long time and very much needed to, as it turns out Tegretol is an antidiuretic (makes you retain water). We look forward to Carson loosing more weight and in turn helping him feel better.

Carson's Phenobartbitol levels were very very high, and concerning to us and his Doctors. We all decided to try and decrease the Phenobarbitol he is on. With in the last two weeks we have tried to decrease it but saw too many seizures. Our next plan is to add another drug called Vigabatrin while we decrease the Phenobarbitol. We hope to have the Vigabatrin started by the end of the week, we will see where that takes us.

With all of Carson's medicine changes we have been seeing him more alert and we have seen many smiles, almost everyday this week! What a blessing to get to see his smile more often.

Carson is doing good in school. One side effect of all the Phenobarbitol he is on is that it knocks him out and has a hard time waking up in school. We hope the new med will help with this as well. He just finished his first full week at school, due to sickness or holidays or Aunt being in town he had not completed a full week before today! Yeah Carson.

OK, and the change in our family..... We are expecting a healthy baby GIRL in March! Carson's going to be a big brother... we can't wait to meet her and let Carson get his hands on her! We did a first trimester testing called a CVS to check the baby's DNA. Eve though I am not a carrier of Menkes we wanted to make sure. The Doctor took some of the placenta and grew the cells for 2 weeks. The results were in yesterday... a baby girl with 46 chromosomes, the number of a healthy baby! We are very excited.

God Bless and thanks for all your continued support! We couldn't do it with out you!