Soooo...tomorrow we will rise at 4am to make a trip to Pittsburgh for Landon to have a sedated hearing test(I'm not sure of the proper name). Both Brent and I think it's a waste of time, and I actually still want to cancel, but we are assuming it has some importance since 2 doctors recommended it. We know he can hear, so I'm not sure what this is all about. They question if he can hear low decibles...who cares. Sorry, but it's the least of my worries. I'm don't ranting!
Landon is much happier these days!!! He will officially be off felbamate Tuesday, yahhhh!
I'm off to bed...4am will be here soon! Prayers for all!!!
Xoxo,
Heather
Thursday, June 30, 2011
Wednesday, June 22, 2011
Farewell felbamate!
I am so glad Landon will finally be done with felbamate in 2 short weeks! Do you ever have those moments when you think, duh, that's the problem! Well I had just that on Sunday when I realized Landon began, not sleeping, and crying non stop days after starting felbamate! I almost feel like a bad mom for taking so long to figure this out. All the information about felbamate doesn't mention fussiness, but the neuro said I was probably right on. Now I'm just counting down the days!!! I am soooo ready to have my happy baby back! Maybe he wil actually make it through a therapy session!
Prayers for you all!
Xoxo,
Heather
Prayers for you all!
Xoxo,
Heather
Saturday, June 18, 2011
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
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
Tuesday, April 12, 2011
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
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
Thursday, March 31, 2011
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
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
Tuesday, March 22, 2011
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
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
Tuesday, March 1, 2011
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
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
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