Thursday, August 26, 2010

Catch up...

I'm not sure where to'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 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 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!!


Wednesday, August 4, 2010


So it's been a week since Landon started Banzal. Since then, he went 3 days with almost no sleep, and Sunday started with a fever(which he currently still has on and off). He has been the the pediatrician and they said he looks great. Maybe a slight upper respiratory infection. I'm just starting to put together pieces, that maybe it is the banzal? Online it said to contact your doctor if you have a fever, or sleeplessness, along with other things. I have called twice and continue to wait for the neurologist to call! Frustrating! Hopefully he will be better soon! This is the first time for him to be "sick sick" as I call it. The one good thing is he continues to be pretty much happy! Boy are we lucky...or I should say I, since I stay home with him. Anyone else have any side effects from it?

On the seizure side, he continues to have them daily or every few days. They have been much more severe since we stopped depakote, lowered topomax, and started the banzal. Maybe it's too early to tell?

Hope all is well!!!