Ian Update- 6/8/24
"“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 2 Corinthians 1:3-4
What blessings we have been given recently. Especially with our little warrior. We updated that about a month ago, we had to see endocrinology to follow up about Ian’s unexplained weight gain. We finally got the requested bloodwork done, and from what I can tell through the app, everything has come back as being normal. While this means Ian will have to continue a stricter diet, this also means that his tumors aren’t causing any of his hormones to go haywire.
We also had a follow up appointment with neurology. Ian’s seizures have been well managed since adjusting his medications a few months ago, and neurology agreed he’s on a good dose. We were cleared to follow up in 6 months instead of 3, unless of course Ian were to exhibit any seizure activity/symptoms.
My last post I also mentioned that we may be adding ENT to the mix due to Ian having a cough for 6 months with minimal relief and a new onset of snoring. The good news is that we started giving him a nasal spray for allergies twice a day, and Ian is thankfully no longer waking up in the middle of the night having a coughing fit. He is, however, still snoring, so we are waiting to hear back if it is still worth going to ENT. My guess is yes, we will, but to have one less thing to worry about with the cough being under control is a blessing. (All of us getting sleep is a MAJOR blessing!)
Our only appointment between now and August as of right now is Ian’s dental surgery at the end of this month. He’ll be getting caps put on all of his back molars due to their severe decay, most likely from the chemo he received a couple years ago. Because of Ian’s autism, it was decided the best approach was to have him sedated for his. While he’s sedated, he’ll also be getting x-rays so the dentist can get a really good look at his teeth and a really good cleaning.
Aside from that, we just have ENT and our routine scan/oncology visit at the end of August. Hopefully we will otherwise be able to enjoy our summer without the interruption of some kind of medical emergency.
With all that being said though, Ian is otherwise doing extremely well, and we are so grateful for that.
Both of our kids are doing well, really. I can’t believe our oldest will be starting high school this upcoming school year- it just doesn’t feel real. Both kiddos will actually be off to new schools this upcoming school year. I found out Ian will be able to attend our neighborhood school this upcoming school year due to an implementation of a special needs class in it. I was initially excited upon hearing this because that means we will be a heck of a lot closer to him (walking distance versus a 10-15 minute car ride). But then of course the overthinking set in. I realized he would have to leave most of the friends he made behind. I realized we would need to get staff acquainted with all that is Ian. And Ian just hasn’t had a stable school year yet, between the actual brain injury in kindergarten and his old nurse constantly calling off at the beginning of this past school year, making Ian miss a ton of school. (More than he already does.) And it looks like this upcoming school year may also have a rocky start as he adjusts to a new school and new routine. But we are trying to remain optimistic that everything will work out and not over worry about the changes. After all, these changes are minimal compared to other things we have had to go through.
We are blessed in a magnitude of ways beyond our children. We are blessed with love and support. We are blessed to have a safe place to call home. We are blessed with food on the table. We are blessed financially. We are blessed with our jobs and ability to work from home to better care for Ian.
Praise God for these blessings so that we may help others. Follow your heart, follow your intuition. Don’t let the negative thoughts win. Changing my mindset to a more positive outlook has helped me deal with the hand I’ve been dealt. Life isn’t always easy, but pessimism never helped anyone. Dance in the rain and wait for the rainbow, for this, too, shall pass.