Here is the latest on our family...

Sunday, March 8, 2009

Road trip!

Eyes

Henry's ophthalmologist had plenty of news for us.  Henry's left fovea is healing very cleanly.  In fact, his doctor stated that he would not have noticed any problem with the fovea if he had not specifically been looking for it.  We will not know conclusively that the fovea is normal until Henry is old enough to cover the opposite eye and read a vision chart, but we have every reason to believe that it will be.  

We also learned that Henry is extremely nearsighted.  Ophthalmologists have the ability to use a beam of light and various lenses to determine a baby's eyesight even before he or she can read.  Since Henry had been treated with preparatory eye drops for examining his fovea, not for a vision assessment,  our ophthalmologist conceded that his exam may not have been very accurate.  However, he expects that we will be outfitting Henry with glasses in the near future.  We are scheduled to have a full vision assessment at The Chicago Lighthouse on March 30.  You may be seeing pictures of Henry in his new specs soon.  

Feeding

We removed Henry's feeding tube last weekend, and he has been 100% bottle feeding for the past eight days.  With reduced medication in his system, he always wakes for his meals.  He weighed in at 14 pounds 3 ounces at the pediatrician on Friday.  He is 25.5 inches tall.  We hope that our NG tube days are over.

Seizures/medication

Henry is now phenobarb free!  As some of his therapists predicted, he is quite a different baby.  In addition to always waking for feedings, he is also much more vocal now.  He even cries, but only for one breath at a time.  When he runs out of air, he stops crying.  

Unfortunately, we have been seeing more seizures lately.  Each lasts between five to twenty seconds, and he seems perfectly fine as soon as the seizure ends.  They primarily seem to happen during the transition from sleep to awake.  He has an EEG tomorrow afternoon.  We expect that his neurologist will recommend a slight increase to his Keppra dosage.  

Road trip!

Last weekend, Henry made his first trip to see his family in Pennsylvania.  Henry is a good traveler and was the life of the party all weekend long.  We have posted many photos of our adventure here.


2-27-09-Henry
3-1-Everyone


3 comments:

Steele Blog said...

It is so great to learn about Henry's progress. I am sorry to hear about the seizures but it sounds like once the docs tweak his meds, they will hopefully subside. I look forward to seeing him in his adorable specs. When it gets nicer, let's get together.

Kate said...

Henry is so handsome and somehow keeps getting cuter!!!

It looks like Hank had a great PA visit. All the pictures are beautiful. I especially like the ones where everyone is adoring Hank!

Thinking of you all all the time.

xoxoxo,
Kate

Will said...

Thats great that Henry is off of the Phenobarb. I'm glad the new medication is working out. I'm so glad that henry is responding more, and even crying.
He looks so handsome!

-Will

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