a new season is upon us

I had started this update with some good news... and then by the end of the day the news had changed and it's even better now.

We have been a little quiet because we're just trucking along with Gideon. He receives anywhere from 3-5 therapies a week, 2 of which are at a center every week (speech & feeding). We were actually "graduated" to a once a month checkin until his speech develops more with our speech therapist. He has met all of his goals which is amazing! We've been able to have him interactively play in speech therapy with his speaking valve each week and it's been so awesome to watch him excel.

In PT he is working on rotations and bracing and every week he's getting just a little bit stronger. We even noticed yesterday how much stronger he was in the sitting position in his upper body than he has been lately. A big update that we've noticed officially this last week is that Gideon's excessive startling has gone away. Earlier this year he started startling at any sort of light variance - like walking in and out of shadows, turning lights on or off, standing in a shadow and moving into the light. It just stopped abruptly. And I believe that is just the beginning of how abruptly things can change.

Which leads me to our consult at Vanderbilt this week. His granulation tissue is still sitting above the trach BUT we believe whole heartedly that it has shrunk to some capacity. In addition to believing it has shrunk, he actually has been talking around his trach and laughing, without the speaking valve on. ALSO - we keep some gauze around the trach site to keep it from rubbing too much and there has been ZERO discharge coming from it. It's been probably 6-8 weeks since he's had discharge from the trach. We started some homeopathy on him back in September and it is really helping an assortment of things. SO back to our consult. We expected to have a general surgery pre-op meeting and consultation. It was litearlly above and beyond what we could have asked for. Classically, an ENT will look at more than just one area, but he really, really looked at Gideon holistically. He walked through what surgery and post-op would look like. He brought up some things for us to think about and really tried to get the most out of this anesthesia event. And the biggest thing of all, was him saying that after the surgery, while Gideon is recovering, we would switch to a smaller trach size AND try capping off his trach. Capping is exactly as it sounds - it's a little cap that goes on the end of his trach causing him to breath completely through his nose and mouth.

This evening, while bustling about, I get a call from the schedulers that they can get Gideon in for surgery next Tuesday. If we can't make that date then it would more than likely be April before we could get in. I feel like this was a divine appointment. I went ahead and agreed to the surgery and immediately sent out a handful of texts to work on logistics and literally everything is getting taken care of.

So the TLDR is that Gideon is having this next surgery which is big in the sense of all the things happening: remove tissue overgrowth, smaller trach size + capping test, potentially tubes in his ears to drain fluid (clefty babies generally need them because the muscles don't work right that control that piece), a hearing test, and opening up his closed nasal passage (the septum has kind of closed off his left nostril and needs a little opening up - also a clefty baby thing). This has been SUCH a big week. I'm still processing everything and also trying to already plan everything I need before we leave next week and spend a few days and thanksgiving in vandy.

Circling back around to the divine appointment piece. I was thinking about how big of a deal a surgery in vandy will be because it's almost 3 hours away and I hate being away when my big kids are home. Well the way Thanksgiving holidays are agreed upon and the timing of their weekend away, they will already be gone at their dads all week. In addition to that, we are without nursing for the majority of next week (and most weeks Thurs-Sun now). So those are 2 other things that we just do not have to worry about with this. Prayers answered before I even had a chance to concern myself with them.

“Now to him who is able to do above and beyond all that we ask or think according to the power that works in us —  to him be glory in the church and in Christ Jesus to all generations, forever and ever. Amen.”

Ephesians 3:20-21 CSB 7.31.24