Waiting for Sunday

So, I think I have Landon and I packed and ready.  Of course Brent will wait until the last minute possible, and I will be having a nervous breakdown!  I am not the type of person to wait...I need everything ready days before departure.  If not, I will have sleepless nights thinking of what I am going to forget!  I think I stress a little to much, but I know your "out of luck" once you get there.  And as you all know, there are a lot of things that you need to make a little one happy! 

Landon has been having good days with progress.  He is such a happy little guy, and I am very greatful for that!  He is continuing to do more rolling over, and actually holding himself for a second or two when we put him on his hand and knees!  This make me really happy, because I can't wait for the day he is mobile! 

We hope all is well with everyone!  Sending prayers to all!  And a special CONGRATS to Dawson and his family!!! 13 days is amazing!!!


XOXO,
Heather

Packing

I feel like this whole week is consumed with packing for next week.  I always seem to get stressed about forgetting something.  A week is a long time when your 6 1/2 hours away from home.  I'm not sure how our vehicle will fit all of our "necessities,"  the bouncer, minature high chair, clothes, bottles, stroller and not to mention all the special supplies for the diet.  My head is spinning just thinking of all of it!  Wouldn't it be nice if this were the biggest problem of the week. 

Landon had a great day today at therapy!  He was actually standing on his hands and knees with very little assistance.  He continues to make me proud each day.  His seizure activity seems to be about the same, although they seem more intense lately.  He has also decided he prefers not to sleep a full night.  I really enjoy sleep, so I'm hoping this doesn't last long.  But again, if this were my worst problem! 

We hope everyone is doing well...prayers as always!

XOXO,
Heather

Fall Pictures

Ketogenic Diet...here we come!

It's official...Landon will be starting the ketogenic diet on October 11th. He will be admitted in CHOP for 5 days. We are staying optomistic that this is our "miracle." After attempting 12 meds in the last year, it seems this is our next option. We are currently weaning Sabril, and will continue Topomax, and Klonopin for now. If any of you have done the diet, you are aware of the huge task it is. I feel fortunate that Landon hasn't eaten "real" food, other than baby food. He will hopefully make the transition an easy one. Our biggest struggle will be the water and Keto Kool-aid. He hates anything other than formula, and part of me will struggle with fighting him.

Landon is doing great with development! He has been rolling over more and more each day! He actully rolled 6 times yesterday!!!! Might not sound like much, but it's a huge step in the right direction. He continues to sit well on his own, but still tripods. He also took his 1st ride in the shopping cart in Sam's. He really seemed to like it...however he is still pretty wobbly in it. I enjoyed not having a shopping cart and stroller at once!

We hope everyone is doing well, and continue prayers for all of you! Extra prayers for Dawson and his family that his surgery is a huge success!

XOXO,

Heather

Sabril...

So Landon has been on Sabril for a few weeks now. Things seemed somewhat better at first, but as usual things are taking a turn back to the old. His seizures are getting long, and more intense. We are giving it a few more weeks to see how things go on it. We return to Philadelphia for the Ketogenic class, an EEG, and meeting with the doctor again. I have been pretty upset that we haven't had a break, and we are pushing a year since he started having seizures. I have been doing more research which can make things worse sometimes. I feel like i'm becoming somewhat paranoid, and much more emotional. The smallest things are making me cry...and I consider myself to have a pretty hard shell. I know I need to stay strong for him, but I fear the worst. Hopefully things start looking up for our family.

Hope all is well with everyone!

XOXO,
Heather

Catch up...

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

Banzal?

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!!!