Sorry for being absent

It has once again been way to long since my last post! Things of course are crazy hectic around here. Landon had his g tube placed about 6 weeks ago, and things are going well. He does seem to have some tissue issues around the spot right now. We have been told to monitor it for now.

Our exciting news is his muscle biopsy came back normal! We are very glad to hear this, although your mind continues to wonder what the problem is.

I haven't posted in 2 months. It's mainly due to the fact that I am going through a major breakdown period, and the fact that Landon cries almost all day long. I can't seem to get anything done, unless he is sleeping. He is sleeping good thru the night, but can't seem to nap. He's tired, but can't seem to get to sleep. It makes for a very unhappy baby, and a mommy on the edge. I can't figure out what the problem is, so I can't fix it. Say some prayers we find good days again!

We had an exciting trip to meet another little Landon, that also has similar issues as our Landon. It was a great trip, but I wish we could have stayed longer!

I hope all is well with everyone! I continue prayers daily for all of you!

Xoxo,
Heather

Surgery scheduled

Finally, we have a date for Landons G tube, in 2 weeks! Landon will have to stay in the hospital 2 days so they can test it before leaving. I am counting down the days and hours! The NG tube has been with is way too long!

Landon had his 18 month well check-up last week, and he is now in the 97% for height, coming in at 35 1/2 inches! And 94% for weight, at 32lbs. Mommy needs Landon to learn to crawl and/or walk before my back goes out, lol. At the appointment my suspicions were validated...Landon had yet another ear infection. So we now have an appointment to check his hearing and ears next week. Our pediatrician thinks it may be time for tubes, due to all his other issues. We were forced to put him on an antibiotic, which we were trying to avoid, due to the c diff in the past. And quickly after starting I began questioning if the c diff was back? That is too be continued while
I monitor for a few days.

Seizures are here an there. We are having much better days, but not freedom. We are moving in a good direction!

I'm thinking and praying for everyone!

Xoxo,
Heather

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

Much better days!

Thank god we have our happy little Landon back!!! We took him off the Zonogram which I think was making him fussy, not wanting to eat, and very tired. He is now back on topomax, which never did any of those side effects. This evening Brent got Landon to drink some orange pop! I was pretty amazed! He also took a swig or two of formula, and ate almost a whole jar of baby food! I think we are moving in the right direction.

Tomorrow we will be in Pittsburgh again to see the GI specialist. Today we saw the eye doctor, and she took his stent out, and said his eyes look great!!!!!! Finally, good news! I have decided to take a day at a time, and for my sanity, stop worrying about the unknown. I will deal with Landons issues when we are positive what's going on.

On another good note, Landon hasn't been having his huge clusters. He is now having only short periods of small spasms. It's odd, but we are super happy to not be seeing any partial seizures!

Praying for all our friends!
Xoxo,
Heather

My mind won't stop

I haven't been able to post lately. I'm feeling very overwhelmed with everything with Landon lately. I'm not sure if it's the weather or what. We have a very busy week, 2 days in Pittsburgh(eye doctor, and GI specialist) and a trip to Philadelphia. I spoke with our genetic counselor this week, and my mind hasn't stopped yet. I'm not ready to talk about it, and we still aren't sure what to make of it. We will have an appointment very soon as soon as the rest of the results are in. And of course more testing. I really can't help but feel helpless...overwhelmed, and scared. For the first time...I can say I am beyond scared.

Please say extra prayers we get optomistic, good news!

We are thinking and praying for all of our friends.
Xoxo,
Heather