Long update

We went in for landons hearing test, and what a shock(insert sarcasm) his hearing is absolutely normal! Duh! I knew that.
Since I last blogged we have been to Philly twice. Landon had a prolonged EEG the first time, which showed his seizures, and nothing new really. He also had a MRI which came back normal. At first I wanted the easy fix, and seizure freedom. I keep reading stories of babies/kids who have brain surgery and are seizure free and do very well. So after the news I was diaappointed. Our wonder doctor then told me very positive uplifting words, and said an abnormal MRI would have only made landons case more confusing, and he was very happy we had a good MRI!!! I left feeling happy with all the results!

Landon is currently on Clobozam 15mg-am and 20mg-pm, topomax 50mg-am 75mg-pm, Zantac, and a vitamin. His g tube it working great! I am SO happy to not have the ng! We did a very short trial of lamictal, and after only 4 days Landon was going backwards with his cluster seizures, and we pulled it. We increase the clobozam yesterday to 20mg at night. Anyone else see increased seizure from lamictal? And was it as soon?

I think that is all I have to update for now. Prayers as always!!

Xoxo,
Heather

Something a great friend shared...

Most of you reading this blog can relate to what this poem says, and although sometimes it's hard to understand, we were chosen to be blessed with special needs babies. I hope you enjoy this as much as I did!

A talk was held quite far from earth, "Its time again for another birth" said the angel to the Lord above "this special child will need much love."
Accomplishments he may not show and he will need much extra care from all the folks he meets down there.
He may not run or laugh or play, his thoughts might seem quite far away.
In many ways he won't be adept and he'll be known as handicapped.
So let's be careful where he's sent, we want his life to be content.
Please Lord find the parents who will do this special job for you.
They will not realize right away the leading role they are asked to play.
But with this child sent from above comes stronger faith and richer love,
and soon they'll know the privilege given,
in caring for their gift from heaven.
Their precious charge so meek and mild, is heaven's very precious child.

Something a great friend shared...

Most of you reading this blog can relate to what this poem says, and although sometimes it's hard to understand, but we were chosen to be blessed with special needs babies. I hope you enjoy this as much as I did!

A talk was held quite far from earth, "Its time again for another birth" said the angel to the Lord above "this special child will need much love."
Accomplishments he may not show and he will need much extra care from all the folks he meets down there.
He may not run or laugh or play, his thoughts might seem quite far away.
In many ways he won't be adept and he'll be known as handicapped.
So let's be careful where he's sent, we want his life to be content.
Please Lord find the parents who will do this special job for you.
They will not realize right away the leading role they are asked to play.
But with this child sent from above comes stronger faith and richer love,
and soon they'll know the privilege given,
in caring for their gift from heaven.
Their precious charge so meek and mild, is heaven's very precious child.

Sedated hearing test?

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

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

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

Just passing through...

So yesterday I had made an appointment for Landon to get checked out again. He has not been sleeping, very fussy, and still no eating or drinking. My worry was maybe he had an ear infection or something else going on. I was considering canceling it, but decided to take him. His lungs sounded pretty good, but his pulse ox was low. So they put him in the hospital for some testing. So first thing they come to cath him, and he has nothing in him, so it was a waste. Then iv therapy comes in(which I love, not) the first try she got it in his hand, and reached for something, and pulled it out. UGH! So they move to his other arm, and dig around, and finally get his vein. The thing that gets me about the people doing the needle sticks, while Landon cries they say your fine. No sympathy for him at all! He doesn't understand and it hurts! I want to scream at them to be nice, but I just bite my tongue. So of course if something can go wrong with Landon it does. They had to cath him a second time, and the bloodwork they took clotted. While they came in for the new blood draw, I noticed ladons fingers(with the iv) looked purple. I asked the new iv therapist and she was like yeah ask your nurse. REALLY, you can't help me? I'm sitting here alone, and you just stand there? So I lay him down and run out for the nurse. She comes running in to check. Oh no, the bandaging wasn't too tight like I thought, his vein burst and his tissue was full of fluid! His poor little arm looked like a small elephant leg. And he of course was crying in pain. Now I know it wasn't anybodies fault, it's just his luck. So finally after all of that and a chest x ray, we were told we could go home. His pulse ox was still low, but we should monitor him and call with an update. We are so glad to be home, and Landon is also!

It's been a few days since a seizure, which is amazing!! Woot woot!

Praying for all of you!

Xoxo,
Heather

Football?

Breathing treatments every 4 hours-check, NG feeds every 4 hours-check, Tylenol every 6 hours-check, Ora gel 4 times-check, 6 medications-check, 3 precisely measured meals-check, blood sugar and ketones measured-check. I really wish my main concern could be if a football team won. I know to some people they act like it's life or death, but they clearly have no idea. It's a GAME!(not to mention I'm a Browns fan, and proud of it! Brent is a crazy steelers fan)

Anyways, on a more important note, Landons croup had gotten worse. I called the doctor and he sent us home with at home breathing treatments. Joy, more medical equipment, but I will do whatever he needs. We got it yesterday, and I must say he is significantly improved! I'm so happy! Between the 4 huge teeth coming in, and the croup, it's been a rough week. Last night he did sleep 5 hours in a row, and I was very thankful! I'm hoping tonight is a good night. I really could use a full night of sleep.

I'm of course praying for all our friends!!!

Xoxo,
Heathet

Croup

So the last few days have been pretty rough here. Landon hasn't been acting himself at all. I thought teething was the culprit, until he started "barking." I only had to hear it once, and we had an appointment at the pediatricians office. Sure enough he has croup. In this house we don't let things get any worse. We try to be proactive. The tough part is Landon can't be on a steroid, due to his prior subdural hematomas(bleeding on his brain). And they would rather not use an antibiotic since he spent almost 3 months on a super high dose for the c-diff. They did a special breathing treatment in the office, and it seemed to help. His cough hasn't gotten worse, but sleeping still seems to be tough. He will sleep 5 minutes only to wake up, and start to fuss. He seems better if I hold him all the time, which makes for a sleepy mommy. I guess the laundry and cleaning will have to wait! Darn, lol

As far as seizures, he continues to have about 1-2 clusters a day. Although I think the zonogram is helping! They seem less intense, and sometimes shorter in length. I'm praying once we add the felbamate we see seizure freedom!

Landon is almost done with the diet. He starts a 1:1 ratio tomorrow! Next Saturday we can start feeding him real food...words can't describe how great that will be! I am praying hard that he becomes interested in liquids soon! I'm ready to throw a "bye bye tubbie"
party!

Praying for all our friends!!! (I miss talking to you all, hopefully we can change that soon!)

Xoxo,
Heather

Goodbye Keto Diet

Landon is now down to a 3:1 ratio, and is eating his food again!!! Yahhhh! I'm hoping this is good news that he may start drinking as soon as he comes off the diet completely! He will be down to a 2:1 ratio Saturday, so say an extra prayer that he starts drinking again! I can remember wanting to start the diet, because it was going to be our miracle. Now all I want is to run, as far away from the diet and as fast as we can! Things have always been tough in our house. From the daily seizures, and struggling with Landon to be a normal baby. But God decided to make me realize how Lucky we were when we started the diet. Things are crazy and hectic with the diet, under normal circumstances, but throw in a feeding tube and refusal to eat...and it gets overly crazy! I hope things return to our "normal" asap! We had to try the diet, and wouldn't change it, but I'm not sad to say goodbye!

Leaving the diet means more drugs. Landon will soon be back in Philly and we will be starting Felbamate...if you know anything about it, it's scary. Unfortunately, we have to try it. So we will say more prayers than now, and pray Landon doesn't have any of the awful life threatening side effects. He is still having about a seizure a day. But he seems to be recovering quicker after them. He is continuing to make slow progress. He has been overall happy for the last few weeks, other than some teething issues.

We are thinking and praying for all of our friends!

Xoxo,
Heather