Eliah Update

GREAT NEWS!!!!!!!!

 

Eliah had an EEG on Tuesday afternoon, and the Neurologist called today to give me the results.  Eliah has shown significant improvement from his last EEG.  He is having normal wave patterns with rare spikes in the back left of his brain.  Which means the doctor is further reducing his seizure medication.  We get to wean him off two medications, leaving only one left.  And the ones his is coming off of are the ones that hinder his ability to develop.  So we will hopefully see great advances in his development in the coming weeks/months. 

 

We also had an appoinment with an Opthamologist this week.  The doctor does see some atrophy (shrinkage) of some of the nerves in Eliah's right eye.  However, it is still within the range of normal.  Eliah does have some visual impairment, but may be due to his delay or medications.  His eyes are formed correctly, so he may be perfectly normal as he grows.  We can definitely tell that he is trying to focus on things. 

 

We also had a visit from SC School for the Deal and Blind this week (busy week, huh?).  Anyway, we all feel that his vision is not the top priority at this point.  We need to get him on track with motor skills (rolling over, sitting up, etc).  So will are awaiting a call from the next agency in the loop that will be providing physical therapy.  However, it may take a while for us to get going since they have a long waiting list.  But Eliah has been trying to work on things himself.  This past Sunday he was able to reach up with both hands and grab his bottle, pulling it to his mouth.  Then later, reaching up and grabbing a toy on his chest.  So we have been thrilled with his improvement.

 

And if I don't say it enough, thanks to everyone for the kind thoughts. 

 

 

Eliah Update

Eliah has been doing great. We have started the process of qualifying for the state program for PT, OT and other services. We/they think he may have some vision problems, so the School for the Deaf and Blind is coming out next week.

Eliah has been trying very hard to sit up, but he cannot hold his head up for very long. His head is huge and heavy, and he can only hold it up for about 30 seconds at a time. He weighed in last week at 21 lbs at 7 1/2 months. He is breaking my back! I have to hold him all day, every day. I was so happy one day last week that I had 8 minutes of not holding him. I was able to wash bottles, unload & load the dishwasher, and straighten up. It's amazing what you can accomplish in a frantic 8 minutes. All napping and all awake time is holding him. Ughh! I can't wait until he gets older!

He has shown great improvement with other things though. His seizures have mostly stopped and the doctor has further reduced his medication. We see him breaking through the medication "fog" every now and then. He is actually looking at toys now. And he is able to grab toys (with huge effort) that hang down from his playmat. And the key is, he is able to grab with either hand. So we have been thrilled.

The last time we went to the Pediatrician, he mentioned Cerebral Palsy several times, so we have been worried about everything Eliah does. And other than some stiffness in his legs, he seems to be doing everything well, just at a delayed rate. Still no rolling over yet though.

Eliah now has four teeth. The fifth one is breaking through today. And he has been eating solids successfully for the past month (another huge deal).

Overall, things are well. It's just our version of normal.




My Wild Child.....I didn't even change her clothes or brush her hair today. I feel so bad. I just went to comb her hair and discovered that she has glue in it.