Last week, I also took him to the eye doctor for an exam. I was very nervous about this appointment because Carter pokes his eyes constantly and I have been so worried about what kind of damage he may be doing to them. The eye doctor noticed right away that Carter's pupils do no respond to light. We have always noticed that and wondered why. We have always said he is our little owl. The doctor said it could either be from his muscle relaxers or issues with his nervous system. She said she sees it in adults and children quite often. The good news was that she didn't see any damage to his eyes from the poking. The bad news was that she worries that the progressive aggression to his eyes could be from a neurological issues that could cause him to be blind. The anatomy of his eye is fine and functional, but it is very common in people who are inflicted with Mitochondrial Disease to lose their hearing or vision due to the brain not processing what it sees or hears. She referred Carter to a specialist who can do more extensive testing to determine how well his brain is processing what he sees. Now we wait. His appointment at the specialist on February 21st. Once we know whether he can see or not, we will order tinted glasses to protect his corneas from the UV light and hope that this will help him explore and look up more (when light isn't so bright to him from the dilation).
Just when his development is at it's best and he seems to be on the upswing after a rough fall with pain and aggression...we face new challenges. We face more unknown and more fears. I am left to re-evaluated and make new plans. This past month, Carter's motivation has waned and he doesn't seem as eager to cruise and play. Seizures are always a huge risk for him and my heart is telling me that this is the issue. My Monday will be spent making more calls to his specialists to ask what we do now. I'm not a wait and see kind of momma...I want testing and answers. I want my son to be safe.
This journey as a mom to a little boy whose life changes from moment to moment, I don't think my mind ever really relaxes. Fortunately, he has stayed out of the hospital since early November and I am hoping we can keep it that way. But if these fevers and seizures don't stop, I worry he will end up in the hospital soon for testing and observation.
On a positive note, I created a team this past week called "Energy for Carter" to raise money that is being donated to Special Olympics of Michigan. Our team has raised 75% of our goal of $400. Yesterday morning, my twin sister and I took the plunge and jumped into a frozen lake in Carter's honor! We dressed up in 80's gear and represented our little warrior! We were even interviewed by channel 6 news before we plunged. A lot of people have asked how it was...my only response is "COLD!" But it was worth it for the amazing cause.