Surgery

Landon did amazing Monday, and everything looked great! His tongue is healing wonderfully and the scope looked good, but we are stil waiting on the biopsy results. I was hoping the tongue would have been the culprit for the feeding issues, but we haven't seen a change yet. I'm guessing as soon as we get the biopsy results the appointment with the surgeon will be made for his button.

We are waiting on Cleveland to get in touch with us to schedule Landons muscle biopsy. I'm hoping it is soon. As most of you know, the waiting game begins after it's done for another 3 months. I wish things went quicker!

Landon is scheduled to have a sleep study in May. Talk
about getting him in for an appointment in a timely
manner, yeah right! Let's hope it's nothing major!

As for the day to day issues we are having, sleep is #1! I thought he was finally over the insomnia. He did great sleeping Monday night, but that was the only night. He is only sleeping a few hours, and having trouble falling asleep! On top of everything else his cough/cold issue is back...AGAIN! Ugh! I'm so ready for summer! Our weather goes from 70 to snow! It's bizarre! So back on breathing treatments we go!

I'm praying for more nights of sleep, and Landon feeling better! I hope you are all well! Prayers ad always!

Xoxo,
Heather

Long update

So it's about time for our genetics appointment. I haven't really felt like myself. I feel drained from all the researching and worrying. However Brent and I did make it on our trip to Las Vegas with my brother and sister in law. We had a great time, but couldn't get adjusted to the time change! As soon as I stepped off the plane my anxiety took off again.

Landon was started on felbamate soon after my last post(beginning of March). The Philadelphia genetics team didn't think landons results were concerning, and it was safe to start. He seems to be doing well with it! However, he has insomnia. Fun fun. They said once he is adjusted it will get better. With each increase it takes him a few days, but he seems to do better. He actually went 5 days or so without a seizure! Fingers crossed this is it!

Therapy seems to be going well...they are working on eating, but he still won't drink. He has a scope and tongue clipping Monday morning. We are staying optimistic this will help!

I feel super overwhelmed these days and don't even know where else to begin to blog. Hopefully my attitude changes soon, because Landon needs a energetic mommy!

Hope all is going well for you all! Prayers as always!

Xoxo,
Heather

Catch up

I have definitely been slacking on the blogging. I just haven't had the most optimistic days. We went to Philadelphia weeks ago. Brent and I went and my mom watched Landon because the night before we left he got the flu. Lucky him. We went all the way there and decided not to start felbamate, due to some of the skins biopsy coming back "suggestive". So now the waiting game has started for March 24th when we go to genetics again. They said hopefully the remaining testing will be in, and we will decide where to move next. Today Landon has his swallow study done to possibly come up with a reason he stopped drinking. I was actually impressed with how in depth they were, and how well the day flowed. They agreed he is tongue tied...so we go back friday with an appointment with the ENT to talk about surgery. They said it is a good possibility that it is the problem. Yah for that!

Landon has stopped Zonogram and gone back to Topomax since he was miserable on Zonogram. We also started CoQ10, and we think it has helped his energy.

Please say some extra prayers that we get some good news at the end of the month.

Prayers for all our friends!

Xoxo,
Heather