Wednesday, November 6, 2013

VNS


The last few weeks, actually year has been crazy. We did a trial study of a new drug coming called Perampanel. We also started a drug in May 2012 called Potiga. We saw huge success with the combination last November 2012 thru the beginning of the year 2013. Landon made huge strides during this period. Around July the seizures were coming back slowly. Our seizure free periods were short, but we were seeing significantly less seizures. They pulled the study drug and we then stopped Potiga due to Landon's mouth turning black, and major GI issues. A possible side effect from one of them. We attempted klonopin again but Landon cried 24/7 while on it. It didn't seem worth making him miserable! We also gave Onfi another shot but saw increased seizures. He is currently taking lyrica and we are waiting to meet with neurosurgery for his Vagus Nerve Stimulator consult. We are optimistic we will see improvement with seizures. I will keep you posted on his progress through the surgery and during the device increases. 

On a very happy note, Landon has been eating a select number of foods via mouth since March 2012. I may have mentioned this but it is a huge relief! He started eating only snack pack pudding, then he would only eat cool whip. Since then he went through Apple pie, cheesecake, zebra cakes, and sweet potatoes. I am glad to say he is eating 100% of his meals and I only use his g tube for meds and yogurt(since his c diff battle). He recently started eating PB & J, bananas, Cheerios, pancakes, over easy eggs, and bread. We continue to try new things and thank God for each good day.

Thoughts and prayers for all of our friends!

This is Landon after dinner the other night. He was clearly ready for bed! 


My attempt at getting a picture of the fisherman and fish together on Halloween! 

 

Monday, October 7, 2013

A much overdue post

It has been years since my last post so it may take weeks to update on how our family is doing. Ill start first by saying we have had a lot of life changes. We moved a year ago to get Landon more help, we welcomed his another little boy 6 weeks ago, and Landon continues to amaze us! We are still fighting daily seizures but have had some great things happening. Landon stopped eating by mouth in October 2010, and we finally have been able to get him eating "some" by mouth since March of this year. He is very picky, but finds new things he likes every day! I continue to make food for his g tube to give him the calories he needs. He is also making some great developmental strides! He is soooo close to crawling! He can get into hands and knees but just needs to coordinate and strengthen his arms and he will be off!  We finished all genetic testing available last spring, hence the baby brother. We decided after finding no know cause or reason for Landon's struggle it was time to expand and give Landon a sibling. We are super excited to have our family grow and are adjusting to being a family of 4. 

I hope to finally catch up with all our blogger friends! We hope all is well and pray for all of you! 


Tuesday, August 9, 2011

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.

Thursday, June 30, 2011

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

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