Two weeks ago we traveled to Children's Hospital of Atlanta where they preformed an ERG on Easton's eyes in hopes that we would have some type of answers for Easton's retinal issues. We were so anxious and couldn't wait to see how the test went hoping it would confirm that all the doctors had been wrong and there was in fact nothing wrong with Easton's eyes or perhaps that it was something small. Easton did amazing for the test and his sleep apnea didn't affect his breathing at all! We were over joyed and left the hospital not knowing what would happen next! The doctors informed us that the test results could take up to 1-2 weeks to get back.
Not a day went by that I didn't check my phone a thousand times a day to make sure I didn't miss a call! I know the receptionist must have thought I was crazy, because I called every day just in case they might have heard something and forgot to call.
A week after his testing the doctors decided that it would be best to preform a muscle surgery on Easton's eyes. This would help prolong his central vision and would help keep him from "giving up" and continue to use his vision. Easton's eyes were pretty bad and it took the maximum muscle tightening possible to straighten his eyes. It was a very horrific sight to see as a mother. Something I was not prepared for. Easton's eyes were solid blood shot and blood had been seeping from his eyes in the place of tears. I couldn't look at Easton without feeling sick to my stomach!
The next day we woke up to find Easton's eyes appeared to be straight. For the first time in his little life he could make eye contact with us!! He also started doing things he had never done before like watching tv, ramming his dump trucks into the crib, and crawling all around the house without crying out to be picked up! He also appeared to be a much happier baby!!!! Even with the pain of surgery and the stinging of the constant eye drops Easton was mostly happy and smiling. I have never been so happy in my life!
My baby had just had surgery about 3 weeks prior which seemed to cure his airway problems he actually ate baby food without choking and he had been progressing with regular foods. His monitors seemed to beep less and less at night. He wasn't aspirating as much on liquids and he had started using a sippy cup and would smile after he took sips, almost to say, "look mommy and daddy I took a sip aren't you proud?". The sleepless nights were all beginning to feel like a thing of the past! I was certain that his sleep apnea had gone away and that his vision had greatly improved and that he would be the exception! Easton would overcome every problem thrown his way! I even delighted in victory as one of Easton's therapist informed me, that, as extreme as as Easton's sleep apnea had been we were lucky that he was alive and hadn't died in his sleep. This was something we had heard numerous times, but this time I already knew how blessed we were and I was no longer scared, because I know Easton has overcame it this time.
I had never been so confident in my life that Easton was going to lead a normal life. Maybe I was too confident superman would be just fine. Reality quickly set in when we received a phone call about Easton's ERG results.
Easton has a form of Cone and Rod dystrophy. We won't know the exact type until we receive genetic testing next week. The only definite answers we have are that, we don't know what the future holds for Easton's vision and that there isn't a cure. Another thing for certain is that it leads to blindness wether it be 5 years from now, 19, or even 20 years from now. They all have the same outcome, others are just more rapid than others.
So here I am again questioning my faith pleading with God to have mercy on my child. I am having a hard time feeling like we are being punished for something. No one can describe the amount of hurt I am feeling inside. All I want to do is rip my eyes out and hand them to my son, because I've seen enough beauty in this world to be content and he deserves that same opportunity. The problem with that is there only one specific part of the eye can be transplanted and it isn't the part Easton needs. So ruining both our eyesight wouldn't give me any answers.
My job now is more apparent than ever. I want to see the day they have a cure for this awful monster destroying lives. I want to spread the awareness on Cone and Rod dystrophy and encourage people to get involved with the Foundation Fighting Blindness. I am determined to find a cure for my son and not to let this ruin our lives. Mark my words, I won't stop until I have answers for my son.
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