Here is the latest on our family...

Saturday, March 21, 2009

EEG #7

Our last post was much too long ago, so I will do my best to fill in the gaps and post lots of pictures.  

Henry's seventh EEG showed no seizures.  Although this was fantastic news, the fact that we had witnessed six seizures in the hours leading up to the test tainted any sense of relief.  We did not witness any seizures during the EEG, and our neurologist assured us that the coalescence of electrographic and observed seizures is a positive sign, albeit a nerve-racking one.  We increased the dose of his seizure medicine (Keppra) by 25%, and we have not seen a seizure since.  Henry will likely be on this medicine until at least his first birthday.  

Henry continues to receive frequent therapy and checkups.  He weighed 15 pounds 3 ounces at his pediatric appointment last Friday, and he is 27.5 inches long.  This puts him in the 99% for length.  He is about to grow out of his carseat!  His head circumference is in the 25%, so our concern about that has diminished greatly.  (It had previously measured in the 5%.)  

Henry is now breastfeeding for every meal.  We are making arrangements to return/donate all of our tube-feeding supplies!  

Henry's next major appointment is March 30 with the Chicago Lighthouse.  Henry may soon be donning spectacles.

Although he doesn't quite grin ear-to-ear, Henry does reward us with occasional half smiles.


With a little help, he will sometimes suck his own thumb, giving our fingers a much-needed break.



Here are some pics from playtime:











And some shots from nap time:



And here are some of Henry's visitors:





Sunday, March 8, 2009

Road trip!


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.  


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.


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.