It wasn't what we hoped for
but it's OK.
Really it is.
This month all of Blaze's specialty doctor appointments started over. They usually do every 3 months. So once again we have been back and forth to Atlanta.
We met with his ped on the 6th and overall she was pleased with how well Blaze is doing.
We met with Emory Eye Center on the 10th to have Blaze's eyes reevaluated and this time it came back that Blaze has two eye conditions. I had already been suspecting one, but the doctor never saw it until this time, so his eyes have actually gotten worse. So now our little guy will have to get glasses. These conditions (just like everything else) was probably caused by CMV.
On the 24th, I took Blaze back to Emory Children's center to meet with Dr Todd. Once again I got the same answer, "NO". At first I thought that maybe he had changed his mind, because he came right in and asked me, "Do you want your child to be a hearing & speaking child?" I wanted to scream out, "Don't all parents want their children to hear and speak?" What kind of question is that????? Instead, I kindly replied, "Yes, I would love for him to be able to hear and speak,". So he reevaluated him, done more testing, and looked over two years worth of notes from our audiologist and after four very long hours we got a verdict. It is official and final. Our son IS NOT A CANDIDATE FOR COCHLEAR EAR IMPLANTS nor will he ever be. It is just to risky a surgery for him and he said CIs would only give him muffled sounds and nothing that he would be able to truly understand. And guess what???? I'm OK with that. He asked me how I felt and I told him that I really am OK with it. I have fully accepted my precious little boy just the way that God created him. However, I will NEVER stop trying to improve his life and the world around him. But, I will NEVER risk his life when it's not necessary...ever.
I entered his office expecting a "NO", really I did, because he had said that before, but that was when Blaze was so tiny and sick and now he is over all a healthy little boy and I thought maybe he would re-consider.
On the 25th, today, we made the trip back to Atlanta to meet with our pediatric neurologist. Over all she too was pleased with how well Blaze is doing. She and I discussed in great length CMV and possible cerebral palsy. She has decided that she wants to do an MRI and look at Blaze's brain again. It has been over a year since they looked at his brain and she is interested in what it might show now that he is older. Maybe it will help us to understand why Blaze is not walking (after months and months of therapy) and our GI seems to think that his brain (The damage from CMV) may have something to do with his eating/swallowing/digesting problems. So he will go back to Children's in a couple of weeks for an MRI.
We have one more specialist to see this month and then we should get a break for a little while.
Other than that, our little guy has been VERY busy with therapy, therapy, and more therapy, and he has had several sign language classes.
Well, that's my Blazer update for today. I'm going to go cuddle up beside my little guy on the couch and take a nap. I'm one tired mom.
Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6
