I'm not sure where to start...it's been way too long since I last blogged. I guess I'll start by saying Landon came down with an Upper Respiratory Infection a few weeks ago...it actually started almost the SAME time as Banzal was started. He ended up being admitted to our local hospital, because he stopped eating for 3 days and became dehydrated. He was only there for 2 days, hydrated, and sent home healthy. We stopped Banzal the next week, which thrilled me, because it made Landon so fussy, and not himself. It didn't help with seizures, so I'm glad to be done with it! Since then we have started Sabril(Vigabatrin). The first few days on it were rough...he had anywhere from 5 to 2 cluster seizures a day, along with numerous single jerks. The last few days have been good, but it seems we always see the "honeymoon period." I'm still not sure if I like Sabril due to the side effects, but we are trying it. We go back to Philadelphia next week as well as Pittsburgh gentics. We have to see an eye specialist in Pittsburgh soon also for Landon's closed tear duct...poor little guy never wins. It seems surgery to open the duct is in the future, as well as a possible muscle biopsy. We also have a day class in Philadelphia to start the Ketogenic diet...has anyone had luck on it? I'm excited to start it, and hoping we see improvement!!!
On a happy note...LANDON TURNED ONE!!!!!!!!!!!!!!!! We had an over the top 1st birthday bash with 85 of our closest family and friends at our local park!!! Landon did amazing all day!!! And after it was over he came home with about 60 outfits, a battery operated 4-wheeler, bike trailer, tiny piano, luggage, 2 sit to stand toys, books, gift cards, money...and that isn't half of it!!! You could feel the love for him that day...it was pretty amazing, and overwhelming. I couldn't have asked for anything better for him to celebrate a crazy, unforgettable first year! He seemed to really enjoy all the attention, and couldn't stop laughing all day!
Turning one seemed to really be his turning point! It was like he woke up and decided it was time to get serious! He is so incredibly strong, although his tone is still pretty weak. BUT he is standing with assistance! That is a huge accomplishment! He is doing so well, I can't believe how well he continues to do everyday!
I hope to post pictures from his birthday on here soon...if I can figure it out!
Hope everyone is doing well as always!!
XOXO,
Heather
We used Sabril with Ady. They told us the only side affect was with decrease of periphreal vision, but who knows if they told us the truth. There is a pediatric eye Dr. in Ferry. Just putting it out there in case you didn't know.
ReplyDeleteThanks! We already saw Dr. Gainer in ferry, but now we are going to Pittsburgh the 24th of September...Landon (on top of everything else) has a closed tear duct they have to do surgery on. What next...
ReplyDeleteHow are you all doing??!
I completely understand. We are doing pretty well. Just kind of taking things in stride I guess is all we can ever do. We just got Ady a brace for her foot to help her walk a little better and now they would like to get the taller one because they don't feel that the other one is doing what they would have liked it to do.
ReplyDelete