20 Aug End of summer medical update
It seems I have reached another milestone in parenting. The sheer frenzy that is for most parents a mix of joy, anxiety, exhaustion, and sentimentality that marks the end-of-summer/back-to-school period. For the first time, I am beyond ready to get Audrey, and to an extent Keegan also, back into the routine of school in order to have more structure, more time to work, and simply something for her to do. I finally understand the kids-dread-it-but-mom-can’t-wait mentality of American lore! (Although I will wave my nerd flag high and admit here that I was definitely one of those kids who adored the entire back to school process – new supplies, textbooks, backpacks, uniforms. So fun!) Keegan also needs his structure and routine more than other kids, so adding back in his twice weekly sessions with his teacher will be very helpful. There is so much I feel that I did not accomplish over the summer that I am extremely anxious to do better at tackling once the routine of school has set in.
This is Audrey’s first year of preschool (starting this Wednesday), and Keegan will technically be in kindergarten (starting the following week). Big milestones that bring a wave of emotion for any parent watching their child move on to the next biggest and brightest thing. Luckily, I am granted those typical parental milestones with Audrey. The range of emotion when it comes to Keegan is an entirely different beast and one I haven’t fully allowed myself to explore yet. Maybe once Audrey is settled into school, I will have time to come to grips with it and write more here. In the meantime, there is so much that I need to catch up on this little blog. Most important, however, is a medical update on Keegan. Since that’s the reason for this blog and all…oops. Then in the coming days, I’ll try to get to the more fun times and/or deep thoughts. I think for my own sanity (and yours) I must once again resort to bullet points. So here goes.
- Keegan has been doing well with his new port that was implanted at the beginning of the summer. Swimming is by far one of his favorite activities. Even though he was not able to swim for over a year and is only allowed one day per week to do so, he is a true fish in the water. Every week he goes farther, deeper, or longer. There is no stopping him! I curse that port at least twice a week, but watching him find pure joy in the water is worth it.
- We have been unable to wean his steroids any more over the summer. Right after receiving the news of the gliosis in Keegan’s brain and the need to aggressively wean his steroid load, he went inpatient for most of June with a systemic yeast infection. To keep him from having an MAS flare, we had to increase his steroids during treatment. We got back to his previous baseline, but then his ANC and white count plummeted for a few weeks. Since then, rheumatology has been cautious in going back to weaning the steroids. We don’t want to rock the boat and need to be extremely careful. Right now, the plan is to reduce by another milligram at the end of the month if his blood counts stay stable. We will reduce by one milligram every 2 to 3 months from here on out, as we have reached a point where his body is so dependent on the steroids that any faster could cause a flare. We have not increased his anakinra again, but we are anticipating having to do so soon.
- We do not have an update on the genetic mapping Scottish Rite is working on. Dr. Punaro was trying to get in touch with the geneticist for an update for us soon.
- We continue to chase our tails with Keegan’s electrolyte levels. He has completely maxed out his current dose, but we don’t want to have to add days on to his TPN if we don’t have to do so. He hasn’t gained any weight or height in the last year. That is another balance we are trying to reach between the steroids and the TPN. The more steroids that come off, we will have to titrate up on his TPN to compensate for the increasing intestinal problems. We continue to evaluate this on a weekly basis with his GI doctor.
- Lastly, Keegan had his 18-month follow-up evaluation with neuropsych. This was the report we have been anxiously awaiting since the disappointing news at Keegan’s last neurology appointment. The news was fairly positive overall. Keegan is in general developmentally around that of a 33 month old child at this point, just about 3 years old and slightly behind Audrey. That is roughly 12-14 months of improvement over the last 20 months since his last evaluation, which is obviously very encouraging. Ideally, 20 months of improvement or more would be ideal, but in the grand scheme of things, we are very blessed to have had that much progress. The hardest piece of news to digest is that based on the damage Keegan has suffered, he could reach his full potential within the next few years, at which time he will switch from intellectual learning to functional and adaptive skills. We were given some warning signs to look out for, such as losing skills or a plateau in mastering new skills, but the best way to track this will be through repeating the full evaluation every 18 months. Keegan is also at an increased risk of early onset dementia, which could come as soon as the next few years or into his teenage years.
I think it’s best to let the above information speak for itself. There is nothing in the above paragraph that comes as a surprise to us. I won’t lie though. It was quite a blow to actually and finally hear it said out loud by the team. It is information we are trying our best to process and prepare for as best as we can. Our biggest comfort comes from how Keegan has continually beaten every odd. This one is not likely one he can beat, but no one can say definitively when these things will happen. And if and when they do, I’m sure we won’t be ready, but we will try to handle it as best as we can. We promise to continue to give him every opportunity to shine that we can and to be grateful for every day we are blessed to have him here. Thank you for allowing me the time to process some of this information before sharing it. We appreciate every prayer lifted up on Keegan’s behalf. You provide us with strength and encouragement on a daily basis as we travel this road, and we couldn’t be more grateful.