A New Year’s Ian Update

I know, this update is overdue…

I’m sorry about that, I truly am, but life has just been so…

Hard. Busy. Overwhelming. Full. Draining. And probably 101 other adjectives and adverbs…

(and I’ve just been finding it so hard to write)

After 3 1/2 weeks of hospitalization for the intense pain of peripheral neuropathy, Ian transferred to the Sister Kenny Rehabilitation Institute in Minneapolis (a couple blocks down from the Children’s Hospital!) to spend a couple weeks in-patient, getting full days of more intensive therapies, and time in the pool (which I’m trying not to be jealous of…)

It was a move we had discussed with his doctors months ago, after his initial surgery, when it became clear how profound his Posterior Fossa Syndrome was. We had talked about moving Ian to Sister Kenny for rehab, rather than home with out-patient appointments, when he was recovered and medicaly stable. That plan changed when we decided to head to Indiana for Proton Beam Therapy.

When we moved back to Minnesota, it took a while to get new evaluations and get Ian worked into a schedule of out-patient therapies at a local Sister Kenny rehab facility. As his pain increased, appointments were harder to get to, and many were missed with all of the extra runs down to Children’s for more tests. His therapy was hit-and-miss, with not nearly as much progress-making as any of us wishes to see, especially Ian.

Being back in the hospital (for pain control), not on chemo, getting twice daily therapy again, was encouraging (despite all of the pain he was in), and gave him the chance to get in to Sister Kenny for more intensive therapy. Seems that insurance wouldn’t cover it if we just wanted him admitted (from home) for rehab, but they would cover it if he was transferred from a hospital.

He gets out tomorrow!

Once home, the plan will be for new evaluations and then starting off with therapy appointments 3 times a week, interrupted by other appointments like follow-up MRIs and another lumbar puncture, meeting with oncologists, and another hospital sat for a round of chemo…

We’re closing in on 6 months on this road. I can hardly believe all that has happened. He’s come an incredibly long way, yet he has such a long way left to go…

I want to say a HUGE thank you to every one of you that has stopped by to read these updates, to every one of you who has lifted up earnest prayers on behalf of our son, to every one of you who has left such sweet & encouraging words, to those (local & far away) who have given of their time and their resources to bless our family. Thank you all, ever so much!