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.