We started the morning bright and early checking into mayo clinic at 0645. I fed Easton at 5 because they said he couldn't eat for 4 hours before his procedure which was at 930. Come to find out it was actually scheduled at 10. Easton had an MRI and a hearing test which needed to be done while he was sedated. For Easton sedation also means intubation because he is so small. Also the reason he needed tone sedated because they need him still for the MRI. So after sitting and waiting Easton finally went back at 1030.
The hearing test took an hour and the MRI took 1 1/2 hours. Easton got to the recovery area at 2. We spent about an hour in recovery, then it was off to his neurologist appointment, which of course was at the other hospital. We finally got to see the Dr. At about 415. We spent about an hour with him. It was a very long draining day.
From the hearing test we found out he has mild to moderate cognitive hearing loss in his right ear. His left ear is great.
We also talked about the results of his EEG. He still has some small abnormalities on the right side of his brain. They call it focal activity. We are going to wean him off of the phenobarbital, because they don't feel two medications are necessary to control this. They don't think Easton will ever have a completely normal EEG. So that being said, we won't have to do another EEG anytime soon, unless something changes.
When it came to the results of the MRI we didn't get the great and wonderful news we were hoping for. With how far he has come in the last few months I was really hopeful for great news. So when the neurologists first words were "I don't want you to be alarmed by the results... " I knew I was not getting the news I was hoping for.
Easton's ventricles are about 40% larger than they should be. This is because of some atrophy of his brain matter. They are certain this is because of the lack of oxygen during delivery, which resulted in a brain injury. The reason they could not see this on his first MRI is because his brain was swollen and so small yet. The good news is there is no bleeding, and no necrotic parts of his brain, which they thought they saw the first time.
So what does this mean for Easton? We are not completely sure. Obviously he has a developmental delay. That we already knew. They are saying 2-3 months behind, which is not any worse than it has been. They are about 95% certain that Easton will have some sort of delay when he gets older, they just are not sure what, or how severe it will be. They will continue to see him in the NICU follow-up clinic. They think we are doing absolutely everything we can for him right now with physical therapy and occupational therapy. We have also taken him to see the eye doctor and obviously the ENT doctor.
They also said at this time they don't see anything that suggests he might have cerebral palsy.
We really appreciate all the prayers and good thoughts everyone has sent Easton's way. We continue to hope and pray that he will prove the doctors wrong, but I especially am learning that I need to start thinking more realistically about everything.
We are very thankful for all of our family and friends, who have been there for us through all of this.
All we really know for sure is that no matter what happens Easton will always be loved by many, and that is all we could ever ask for!
Thank you again for all of your prayers and well wishes. They are greatly appreciated.
Love
Joe, Cassie, and Easton
A picture of our happy boy!
