We were cleared for another three months! I can't really begin to say how blessed we are at times. Andrew has been hospital free for almost a whole year now! Anyone that's followed Andrew's page for long knows how many times we've had the unexpected ER trips, coupled with long hospital stays. It's great to tell those that ask how he's doing to say, "Well, he's doing well!" and "We've been out of the hospital almost a year!"
The only obstacle we are facing right now is his eye palsy they just found at the eye specialist. The eye specialist has us patching daily for 2 hours, so that his brain will not stop using that left eye. With it being paralyzed, the brain can eventually "learn" to stop using that eye because it can't see out of it, and he could go blind in that eye. We are anxiously awaiting the results so we can get somewhere with what to do to correct this. We are hoping to get him in May 3rd for the MRI to see what's going on in his head and if it was caused by another stroke. they cancelled on us a month ago because he was sick. They wont put him under while he's sick. While they have him sedated for that, the cardiologist is going ahead and doing the chest MRI to get a good look at the anatomy of his heart (The Glenn, second surgery portion that was done) and see how it is doing.
We have the Fontan, the third open heart surgery, looming over us as he gets further and further out. It's usually done between 2-4 years old. We are trying our best to get his weight up so he's big and strong for surgery.
He's in bi-weekly physical therapy now and he's doing great. He's standing in the middle of the floor without assistance, but still hasn't worked up the nerve to walk or take any steps just yet. He's in weekly speech and feeding therapy. He makes small steps forward, and then small steps backwards with feeding. He does not like anyone or anything coming to his mouth. He is still batting spoons away and refusing to eat. It is harder since he's hooked up to the feed pump 22 hours a day. Who would want to eat if they're being fed 22 hours a day straight?! We'll get him there though!
We are seeing GI every 3 months for feeding, Hematology every 3 months for the clots and blood disorders, cardiology every three months for his heart condition, and of course the therapies (PT and feeding). We stay pretty busy, but we are making great progress! We are hoping to eventually cut down on some of his medications as he gets older, but as of right now Dr. Sallee had to go up on his blood pressure medicine (it doubled!) and GI has started him back on Reglan for the gut/motility issues. For Andrew to have been knocking on death's door last year, he has made leaps and strides to be where he is now. When you walk in every three months to a cardiologist's office that once winced every time he walked through the door because of so many ambulance rides from clinic...to seeing a big bright smile...it's relieving! :)
The only obstacle we are facing right now is his eye palsy they just found at the eye specialist. The eye specialist has us patching daily for 2 hours, so that his brain will not stop using that left eye. With it being paralyzed, the brain can eventually "learn" to stop using that eye because it can't see out of it, and he could go blind in that eye. We are anxiously awaiting the results so we can get somewhere with what to do to correct this. We are hoping to get him in May 3rd for the MRI to see what's going on in his head and if it was caused by another stroke. they cancelled on us a month ago because he was sick. They wont put him under while he's sick. While they have him sedated for that, the cardiologist is going ahead and doing the chest MRI to get a good look at the anatomy of his heart (The Glenn, second surgery portion that was done) and see how it is doing.
We have the Fontan, the third open heart surgery, looming over us as he gets further and further out. It's usually done between 2-4 years old. We are trying our best to get his weight up so he's big and strong for surgery.
He's in bi-weekly physical therapy now and he's doing great. He's standing in the middle of the floor without assistance, but still hasn't worked up the nerve to walk or take any steps just yet. He's in weekly speech and feeding therapy. He makes small steps forward, and then small steps backwards with feeding. He does not like anyone or anything coming to his mouth. He is still batting spoons away and refusing to eat. It is harder since he's hooked up to the feed pump 22 hours a day. Who would want to eat if they're being fed 22 hours a day straight?! We'll get him there though!
We are seeing GI every 3 months for feeding, Hematology every 3 months for the clots and blood disorders, cardiology every three months for his heart condition, and of course the therapies (PT and feeding). We stay pretty busy, but we are making great progress! We are hoping to eventually cut down on some of his medications as he gets older, but as of right now Dr. Sallee had to go up on his blood pressure medicine (it doubled!) and GI has started him back on Reglan for the gut/motility issues. For Andrew to have been knocking on death's door last year, he has made leaps and strides to be where he is now. When you walk in every three months to a cardiologist's office that once winced every time he walked through the door because of so many ambulance rides from clinic...to seeing a big bright smile...it's relieving! :)
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