Ian Update-9 Months After Brain Injury

It’s been almost 9 months since Ian’s inital brain injury. His brain injury occurred after one of his brain tumors hemorrhaged. Not only did it cause bleeding on the brain, but it also caused severe hydrocephalus. Hydrocephalus is when cerebral spinal fluid builds up because it has no place to go. This causes intense pressure on the brain as it pushes it against the skull. That build up, if left untreated, can be deadly. Once the pressure built up, the lack of oxygen caused Ian to then have a mini stroke, all leading up to what is considered a brain injury. When Ian came out of his three-week, medically induced coma, we learned he had right-sided weakness. He had to relearn how to use his right-side, had to relearn how to walk, talk, eat, even drink. It was a process we’ve gotten to see over the last few months.

Physically

Ian continues to get physically stronger each and every day. He’s currently receiving outpatient physical therapy twice a week. He was also getting once a week during the school year, but it’s now summer break. Ian wears a brace on his right leg. It was used to help build up the strength in his right leg while he learned to walk and move around again. He has since grown (a lot), and we recently got him fitted for a new brace. This one will have a hinge on it, allowing Ian to begin to bend his ankle now that his leg muscles have built up. As a check, the doctor who fitted Ian for the new brace had him pick up a pen off the floor. Ian was able to bend down, pick it up, and stand back up without assistance or a loss of balance, which is common at this stage. Ian is doing well walking up and down steps with assistance, using his right hand more, and overall just getting himself around. He still has some balance issues, but everything will come in his own time.

Speech

Ian’s speech also continues to improve. He was already behind in his language skills before the brain injury, so this unfortunately really set him back. However, Ian is starting to talk in few-word sentences again and having conversations with us, which he struggled a lot with before. Same as physical therapy, he gets twice a week outpatient and was getting once a week at school. His speech has significantly improved so much that we may give him a break over the summer and cut down to once a week. (Burnout is very real. He experienced it last summer; we’re trying to prevent it from happening again.) Something that the brain injury actually took away from us for a bit was Ian’s ability to laugh. Whether it was because of how he was processing things or something else, it was something I was missing for a while. It’s starting to come back though and hearing him chuckle has been the sweetest noise!

Mentally/Emotionally

Mentally, Ian seems to be in a good place. Before the hospital admission, after looking back at MRI’s and putting the pieces of the medical puzzle together, Ian’s doctors believe that his tumor may have been slowly bleeding into itself for some time. During the exact same time, we noticed an uptick in Ian’s agitation and tantrums. We always felt like it got brushed off as a toddler being a toddler, a kid pushing buttons to see how far he can go, his autism diagnosis, a side effect of his medication, or a mixture of any of the above. But it always just felt like more than that to us. It always seemed… off. It’s hard to explain, but it’s just a gut feeling you have as a parent when you know something is wrong with your kid. I could just never figure out what it was. Since the resolution of the bleed, Ian is an extremely happy kid. A lot of little things make him smile, and there’s just been an overall shift in his mood. Ian struggled with expressive speech early on in his brain injury journey. He would say “hooray” in the most mono-toned voice that just broke your heart. If you couldn’t tell from the picture, our silly boy is starting to come back, and we are so grateful for that.

Memory

Ian’s memory has been affected by his brain injury. We often find ourselves in situations where we realize Ian is asking us something we gave him an answer to just minutes prior. For example, if we get in the car to go somewhere, Ian will ask where are we going. We’ll answer, but we find this to be a conversation over and over again for the first 15 or so minutes of the car ride. Through an extensive evaluation with neuropsychology, we found that Ian’s short-term memory has been altered, however, he does still have the ability to put those things into long-term memory, it just will take longer for him to do so.

Impulse Control

A big struggle for Ian right now is impulse control and self-awareness. He grabs at things without really thinking about what he is doing.

Cognitive Abilities

Ian has had a harder time concentrating and fully grasping what is being said to him at times. For example, if he says he is hungry and we tell him that dinner is almost done, he immediately says “yes” and will go sit down in the kitchen, even though it’s not ready yet.

While Ian still has a ways to go to be where he was before, we also recognize how far he has come since the night of September 16th. Brain injuries affect everyone in a magnitude of different ways. Most adults have a hard time recovering, but kids are much more resilient. Because Ian is still young and his brain is still developing, his brain can make new connections, allowing him to live a life that is almost like he never acquired a brain injury in the first place. We have been day-by-day for quite some time now. And even though we do feel like we’re breathing easier than we were before, we still feel like we are in survival mode. We will continue working with Ian to give him the best possible quality of life. But from what I can tell, our boy is happy and here with us. And I couldn’t ask for anything more than that.