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! 

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