It’s been a little over 2 weeks since we’ve been home now. Honestly, it feels like days are blurring together for me anymore. The hospital stay seems like so long ago, but it wasn’t. And everything is still very fresh in my mind, body, and soul.
It’s crazy to look back on it and see how far Ian has come. Not just crazy, but a beautiful blessing. Yet, while he has made tremendous strides, there’s still challenges.
Yesterday, Mike and I had a meeting with Ian’s school. They asked us earlier in the week to meet with them to discuss the things they have seen since Ian has been back in school. I went into a little bit of panic mode. He was only in school for 4 days on the day they requested the meeting. And we did have a meeting with them before he went back. What could they have seen so far? I tend to go to think of the worst, especially now as I heal from the trauma our hospital stay brought. I’m still learning to trust in the Universe completely and not letting fear takeover.
During the meeting, we sat down with Ian’s principal, special education teacher, and the school nurse. And they addressed some concerns they have for Ian, mostly from a safety standpoint. The rehab center did have a meeting with the school before we were discharged but here’s where we think the miscommunication stepped in: From a rehab center perspective, Ian was doing very well compared to other kids with brain injuries, but from the school’s perspective, they aren’t equipped to handle Ian’s new needs right off the bat because they are used to dealing with normal developing students. And Mike and I are left somewhere in the middle trying to make it all come together. But luckily, we were given some resources to help us all navigate as Ian transitions back into life at home.
There’s still a lot of needs from a medical standpoint. While Ian is starting to walk again, he’s still very unbalanced and still needs support of his wheelchair to get to long distances. There’s a lot of things that go on while the brain is healing. Things I wouldn’t have even thought twice about before. But luckily, our school district is in constant communication with us. They seem to have his best interest at heart and want him to succeed as much as we do.
Ian goes to school Tuesday-Thursday, but leaves at 1 PM those days, unless he has a doctor’s appointment. Mondays and Friday he has outpatient therapy, and it was decided at the meeting he wouldn’t go to school on those days. Ian needs time to heal and rest after everything he has been through. While Kindergarten itself doesn’t have much from an academic standpoint, it is really good for Ian to be around other kids his age. With his Autism and social development delays, these social interactions at school are really important for to us to be able to provide him. We also discussed with the school about possibly holding Ian back a year and repeating Kindergarten. We had the option to withhold Ian from school this year since he has a July birthday. He’s currently one of the youngest in his class; holding him back would just make him one of the oldest. We decided to send Ian this year, again, to get him around kids his age. We’ve seen Ian do really well being around “typically” developing children. But deciding to hold him back or not will be decided closer to the end of the year. As we’ve seen, our boy is a fighter. Determined. And nothing holds him back.
We also had a doctor’s appointment this afternoon. This one was with neurosurgery as a follow up since Ian got brain surgery back in October. Everything looked good from their standpoint. We brought up the concerns the school had, and they said all of this is to be expected with all the trauma his brain went through. This can all be associated with it healing, and we just need to give him time to do so. A lot of time- they said it could take a year to get Ian back to baseline. Despite that being the recovery time, we’re still grateful Ian is here with us. Our neurosurgeon has been with us since the very beginning, back in 2019. She expressed with us how happy she was with the pathology results, and we expressed our sincerest gratitude for playing a huge role in saving his life.
This our first trip back to the hospital since our admission. It’s a bittersweet place for us. It’s never somewhere you want to be, but damn, I’m sure we glad we have them. I know everyone has different experiences, but Children’s has been really good to our family. To our sweet boy.
Overall, Ian is doing really well. Being at home has brought all of us so much good, but especially him for his recovery. He’s moving around a lot more. He can scootch himself around on the couch and floor. He even tries to get himself off the couch and start standing and walking. I’ve even gotten up from sitting on the couch with him to go get a drink once or twice and found him standing in the middle of the living room upon my return. We put up our Christmas tree a couple days ago, and he has really been getting excited for Santa to come. I absolutely cannot wait to spoil both of the kids this year. They truly deserve it.
Our MRI and oncology visit is in 2 weeks. We ask that everyone continue your thoughts and prayers as we decide on our next steps for Ian’s treatment plan. We are grateful to have all of you with us on our journey. In the meantime, remember to be kind to one another, and that includes yourself 🙂
