I’ve had an emotional and exhausting few weeks. I took Grayson to the doctor a few weeks ago for a cold. We had a discussion about his development and the milestones he should be meeting. There are a few milestones he has not met- most of them related to his eyes. He isn’t tracking objects with his eyes, doesn’t focus very well, and isn’t grabbing at or reaching for toys or other objects. His pediatrician suggested we see a pediatric opthamologist as well as have Grayson evaluated by Early Childhood Intervention (ECI).
We saw the opthamologist a few weeks ago. He agreed that there is some issue with Grayson’s eyes and vision- he has nystagmus, which makes his eyes shift back and forth. We aren’t sure the extent his vision impairment or any other issues right now. The opthamologist ordered an MRI of Grayson’s brain to rule out any neurological issues. We had the MRI this morning at Texas Children’s. Grayson was sedated through an IV while I held him, the scan lasted about an hour, and he woke up sleepy, but his normal, happy self. Of course the whole experience was 10x harder on Ryan and me than it was on Grayson. The hardest part for me was not being able to feed him after 2:00 this morning- with our previous experience with dehydration, I am super diligent about making sure he gets enough to eat every day and was so worried that Grayson would be screaming in hunger and not understanding why his momma wasn’t feeding him. Well, I shouldn’t have been so worried- Grayson slept the whole way to the hospital and then napped again while we waited for the anesthesiologist to prepare the IV (yeah, he didn’t sleep through the IV actually being inserted!). We will receive the results of the MRI in a few days and have a follow up appointment with the opthamologist next Monday to discuss where we go next.
Last Thursday, Grayson was evaluated by ECI. The short version is he qualifies as a student with vision impairment, and also qualifies for occupational therapy because he has developmental delays in several areas. We are hoping the developmental delays are related to the vision impairment (example- he can’t see the toys very well so that’s why he’s not grabbing at them). His right eye appears to be worse than his left, and that corresponds to his motor delays- the right side is worse than the left. The good news is he will start receiving vision therapy and occupational therapy right away; the team is coming back to our house on Thursday to write up a plan of action.
This has been a lot to take in- it’s scary and overwhelming to think we may have a child with a disability. However, there have been so many people who have reached out to us already, and I have so much to be grateful for….
- I’m grateful for Grayson. He is more precious, beautiful, sweet and perfect than I could ever have dreamed. He has amazed me with his strength just in the four short months he’s been on this earth.
- I’m grateful for Ryan and that Grayson has a daddy that loves him so much and will do anything he can to give him a great life.
- I’m grateful for my parents who have helped us by watching Grayson so I can work some weekends, helped us financially, and just love this little guy to pieces
- I’m grateful for our family who have prayed for Grayson and again, just love him.
- I’m grateful for my friend who is an occupational therapist in Charlotte who I got to see last week while in NC. She answered a lot of my questions and was very encouraging.
- I’m grateful for my friends who have listened to me vent, written me encouraging emails, and sent me texts this morning during the MRI to tell me they were thinking about us.
- I’m grateful for our new friends from church who came to our house Saturday night to pray for Grayson and anoint him with oil. They are also bringing us dinner tonight.
- I’m grateful for our pediatrician who didn’t brush off my concerns and directed us to the proper people to get Grayson the help he needs
- I’m grateful for the doctors this morning that kept Grayson safe while he was under anesthesia.
- I’m grateful for Waggin’ Tails, for my job there and that my dogs love going there so much.
- I’m grateful that I am able to stay home with Grayson and we have the time available during the day to get him as much therapy and help he needs.
- I’m grateful that I can blog…it’s good therapy in itself!
So, there’s a lot going on and a lot to be worried about, but at the same time, there’s a lot of grace and love surrounding our little family right now too.