Ian Update- December
Ian had a neuropsych evaluation on November 26th, and we got those results on December 9th.
Ian was officially diagnosed with a mild intellectual disability. While not surprised with the findings, something about hearing it out loud just made my heart sad. Ian was always behind compared to other kids his age, but before the brain injury, he had such a positive trajectory that I thought we could fill that gap at least partially. But now that it’s after the brain injury and all the trauma his brain endured, I’m just really not sure what his future holds for him.
I grieve a lot about what could have been. I grieve a lot about the child Ian used to be. Everyone tells me “but at least he’s here”- and ABSOULTELY. There will never be a day where I’m not grateful for that. But I can’t ignore the grief journey that comes with a child with so much medical complexities. There’s so much he has to miss out. So much he may never be able to do. And yet, we have to work each and every day with him like anything is possible. Not that I wouldn’t do that for him in a heartbeat, but it can feel so defeating and so exhausting when it feels like you have been in the same place for so long.
With that said, we keep working with him. It’s been decided that “school” stuff should stay at school and not be carried into home. Home is where Ian can relax a little bit more; We don’t want him getting burnt out. Our focus here is daily life skills- toilet training, dressing himself, using utensils instead of his hands to eat. And if we see a moment to teach, we can, but we aren’t sitting down and doing worksheets to practice anything.
But both us and school have been finding it hard to keep Ian on task. He’s easily distracted, and it’s hard for him to focus, particularly on non-preferred activities. We recently increased his dosage on his ADHD medicine but haven’t noticed a difference. We’ve been afraid to go up too much more because the last time Ian was on a high dose of this medication, he was a zombie. He had no emotion, and after decreasing the dose, his personality began to pop back out. So, there has been hesitation, as we want to find a good balance. I don’t want Ian over-medicated or on things he doesn’t need to be on, but I recognize that with all his medical complexities, he needs a little help.
This past Thursday, we met with a group of doctors who specialize in pediatric psychiatry, so they can assist us in getting Ian on a medication better suited for his needs compared to the standard ADHD medication he is on currently. It was recommended to switch Ian’s current regiment for ADHD, so he will be starting this new medication tomorrow. This stimulant overall acts in the same way as his current one but is one pill that he takes that activates slowly throughout the day. We know Ian can tolerate this class of medication without interfering with his other current meds for seizures and his tumors, but we are hoping to see more effects with this one.
Particularly, we are hoping it will help to control his hunger. Mike and I believe something happened when Ian had his brain injury. He is constantly telling us he’s hungry, even after he eats a big meal. He will eat until he throws up if you let him. Our other doctors seem to think we just need to see a nutritionist to solve all our issues. And while I don’t necessarily disagree that this could be helpful, I don’t think it solves the underlying issue- he’s still constantly telling us he’s hungry. We watch what he eats, make sure he doesn’t get too much, and we make sure he gets a variety of good, healthy food- not straight junk. The doctors we saw on Thursday listened to our concerns with this, and they are hoping this new medication will assist with this.
Ian has an appointment this week to pick up his new AFO brace (a brace that goes on his foot, ankle, and up his leg to stabilize him while he walks). We will follow up with psychiatry in the beginning of January, and our next big appointment after that isn’t until February, when we will have his routine MRI and oncology visit. Last Christmas season, we spent some time in the hospital after Ian had some breakthrough seizures. We are hoping and praying for quiet holidays this year.
We wish all of you, who follow our journey, happy holidays. Thank you, as always, for all your love, care, support, and prayers. We couldn’t get through this without you. -The Cogley’s