Day 1

Sooo, day 1 is coming to a close. Thank goodness! The day started well, but things seemed to not go in Landons favor! First I could tell he wasn't acting 100%. he has started this weird eye flutter thing, and they are conceded way be seeing a new seizure type? They may want to catch one on an EEG. Great, more time in the hospital. Then I noticed Landon have a single spasm jerk. I tried to ignore it, but couldn't ignore the 4 following each half hour, or the 5 minute seizure to end the night. Boo!! And on top of all the seizure activity, it took 3 tries to get his IV started. He was a trooper, but it kills me to watch him cry!

We learned how to check landons sugar and ketones, and I was surprised how simple it was. Not what I imagined, in a good way! Landon hasn't been feeling well, and isn't eating great. Soo we were surprised he is on his way to ketosis...not on purpose at all. He needs to be 1.5 to be released, and he is already .5! So that's great!! Although, we DID NOT intentionally do this! Tomorrow starts the full blown diet. Ready or not, here we come!

I'll keep you all updated!

Prayers for everyone!!

Xoxo,
Heather

We have arrived

We have safely made it to our hotel room for the evening.  I can't describe how I feel right now.  I'm excited, nervous, anxious, worried, and just about everything in between.  I am confident this will be our answer, but the very small negative side of me is worried.  Worried what if it doesn't work?  What will our next move be?  I know I need to sit back and relax.  So that's what I am trying to do tonight, and over the next 3 months while we wait to see our miracle take action! 

On a very positive note....we are 4 days seizure free!!! Which is great for us!  Not sure what changed to help...but we are glad we are seeing the positive change!   Maybe there is something in the air that came up from Alabama? 

Hope all is well with everyone, prayers as always!!!  I hope to keep everyone updated on the progresss this week!

XOXO,
Heather

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