New Year, New Stress, More Grateful Hearts

It’s safe to say 2022 was not my favorite year. (If you’ve kept up this far, I’m sure you can guess why.) As the New Year approaches, we are hoping for a year full of good health, peace, abundance, joy, and love. But also as the New Year approaches, we know there are new stressors either to come or to continue to deal with. And even so, we’re going in to 2023 with grateful hearts to be where we are now.

It was an extra special holiday this year to be home as a family. And to share it with friends and family throughout the last couple weeks. Mike and I had Monday off, and the kids were off from school. But reality was quick to make an appearance with doctor appointments for Ian on both Tuesday and Wednesday. (But I will say, I have a much deeper gratitude for outpatient appointments after our nearly 3-month inpatient stay.)

Tuesday’s appointment was with the ophthalmologist. Ian has followed with this specialist even before we knew about his brain tumors because he was born with a defect in his left eye. (He’s missing part of his iris.) They also determined that Ian is far-sighted, has astigmatism, and this appointment showed his left eye is getting more and more weaker compared to the right eye. We’re hoping with the prescription update that he’ll be more willing to keep his glasses on. We also have to patch his right eye for an hour or two a day to build up the strength in the left eye. We had a hard time doing this last year, but now that Ian is much calmer and more willing to do unpreferred activities, we’re hoping we’ll have better luck. We think his tumor slowly bleeding over the last few months may have been the reason he was having behavioral problems earlier this year. It breaks my heart to think about that. All that time of him not being able to communicate properly what was wrong with him because of his Autism… It’s really wild how much of a shift he has had since getting the tumor removed. But on a positive note about this visit, the back of the eyes still look healthy, which is a concern because of one of the tumors being near the optic nerve. But for now, we’re still good there!

And then came Wednesday. An appointment with the brain clinic. This was an important appointment for Ian to have, as we saw a couple of different specialists this day to see how Ian is doing since leaving the PICU and rehab. We actually saw one of our roommates from the rehab center while we were here, and they told us their son is actually still sleeping a lot during the day. This is common after brain injuries, but it’s not something that seems to have affected Ian too much. And I think it pleasantly surprised everyone to hear. Even Ian’s school seems to be concerned about him resting his brain, but our boy is on the go at home. He does not slow down. He yawns and says he’s tired, but he’s not passing out from exhaustion.

We discussed a lot with the doctors at this visit about some of the things we’ve seen at home. Good and bad. Ian being awake and alert, moving around, using his right side a lot more since being home, his positive mood shift. We also talked about the possibility of Ian’s short-term memory being affected. While common for brain injuries, it still needs addressed to help Ian get better. When we go in the car to go somewhere, he’ll ask us every 2 minutes where we are going, even though we just told him. He also asks for things that he already asked for within a 5-minute time frame. The doctors gave us another explanation that it could be he feels the need to be repetitive, specifically for Ian it’s repeating phrases, which is something you’ll see a lot with kids on the autism spectrum. It wasn’t something I really thought about since Ian didn’t use much vocalization before, but now that he’s talking more, it’s certainly a possibility. We’re going to continue to monitor this and see how things continue to progress.

We also talked with them about the fact Ian seems to be impulsive now, grabbing at things very randomly and suddenly. He’ll even say he’s sorry after doing it, like he knows he shouldn’t be, but can’t help it. (It’s honestly heartbreaking.) The other big thing was Ian’s rapid growth. When we were admitted to the hospital, he was a size 5. By the time we left, he jumped 2 sizes and is now in a size 7. It’s been known that the thyroid can be affected not just after a brain injury, but for anyone with a brain tumor. We had seen an endocrinologist back in August, so it was recommended we follow up with them again to see if anything has changed since then with the hemorrhage, stoke, and brain surgery. They decided to send us for bloodwork after our appointment to check Ian’s thyroid function, but that seems to have come back okay. We’ll have to see what endocrinology wants to do next.

We talked a lot about school and what would be best for Ian. After seeing how well Ian was doing, the doctors agreed that Ian should attempt to return to school full time (slowly working our way into it at the very least). Now that we have more recommendations on how to help him, we know we’re going to have to open up his IEP after break and make some adjustments. Ian has so much potential in him. He just doesn’t always verbalize that with others. But when it’s just us, he can count to 30, he knows his letters, colors, shapes, how to spell his name. But there’s just some things he needs extra help with like staying on task or using the bathroom. A one-on-one aid seems to be the key to getting Ian to be successful, I just don’t know how possible it is at this time, or when that time will come. To be honest, I’m a little frustrated with some things that have been going on at school, but I don’t think anything is out of malicious intent. I think they are doing the best they can, Ian is just a very special case. They aren’t sure how to navigate or best help him since they don’t see kids with brain injuries very often. We have a couple different programs helping us out both at home and in school, so hopefully we’ll be able to get everything in place soon so that Ian can have the best possible chance. The best chance to succeed in school. To reach his full potential. To have the chance, the opportunity to shine. To have the best possible outcome for life. His life is already taken over so much by the brain tumors. He deserves a chance at some kind of normalcy. To just be a little kid.

There are so many appointments coming up in the next 3 months alone. And I’m sure it won’t slow down. As busy as things are though, we always try to remain grateful for what we have. From hearing the words “brain tumors” for the first time to holding your child’s head between your hands to keep him looking at you while they get blood work done, singing songs and taking deep breaths while doing so. From seeing your child running, jumping, and laughing to seeing him in a hospital bed with tubes and wires all around his little body. From holding him when he’s sick from chemo to seeing his smile light up to one of his favorite things. I don’t wish this life on anyone, but our good moments are sweeter than I ever imagined, and I’ll continue to cherish them forever.

I normally try to do a New Year’s resolution every year, but this year I’m not. I have things I wanted to do before then, so I’m actively doing those things now. You don’t need to wait for a new year, a new season, a new month, to do anything. You can make the decision to change right here, right now. I just hope this new year is kinder to my little warrior.

From our family to yours, I hope you all have a nice, safe, prosperous, new year!