A very long, overdue update

First off, thanks for still hanging around, checking in on us, and praying for Gideon (and us). I know I left some cliff hangers and many of you know about our summer, but there has not been a formal update from us! I honestly took a step back from planning, scheduling, immersing myself in the medical things. I need a summer. I needed some normalcy and also, I was overwhelmed by a lot of things. The fact that we are still living medical complexities that make "normal" life seem even further away. So the easiest thing to do was just take a step back. Pool days. Doordashed dinners. Lots of family time. And simple things.

So before we get into the medical things, here are the BIG things that have happened this summer!

We started with a new feeding therapist and facility and it is a wonderful fit for Gideon. He is making BABY steps but steps in the right direction. He now successfully drinks from a honeybear and open cup (with help). He has tried so many different foods, and our goal is still chewing and self feeding - no big update there other than there are the tiniest of advances every few weeks.

Gideon took his first BIG trip to Pennsylvania at the end of May. My grandfather came home on hospice and we were blessed with the opportunity to travel up to PA and visit with him and family, and some of our family members were able to meet Gideon, which was SO special.

In June we stayed in Townsend, TN at a cabin for a weekend and Gideon loved the swing inside! It was a sweet little time as a family.

In June we celebrated Gideon's 2nd birthday!

We matched in overalls

And in July we celebrated big sister turning 13, the 4th of July and went to the beach! Gideon LOVED the ocean and the sand and even self fed sand into his mouth. He loved playing with Zech & Evelyn and watching Bluey with them in the mornings. We are so very thankful to have stolen a few days away to recharge and quite honestly I think I could have stayed 2 full weeks. Next time we will definitely take someone to help us so we can do things with the big kids by ourselves and maybe even steal a few dates.

sand & waves with dad

beach naps

This summer was nice. It was sweet. There were still stressful moments and lots to manage but it has been so good.

Now for the medical updates.

Mid-June, Gideon woke up one day extremely tender to be touched on his stomach, and wincing in pain. We realized his g-tube was too small. So into the walk-in clinic we went to get a new tube swapped out (mind you on a super busy week leading up to my needing to go out of town for a funeral). Thankfully, we got it swapped out and he was immediately so much happier! And on the topic of GI, Gideon finished his LAST BAGS OF MILK this past week. This is a huge milestone and I'm so thankful to have been able to provide him with milk for 25 months of his life. He now only gets water through his tube and ALL CALORIES BY MOUTH!

In May we had a scope to hopefully get Gideon's trach out. Our pulmonologist saw that Gideon's airway is still floppy (dynamic collapse), narrow, and he also had enlarged adenoids. Many kids are perfectly fine making it through life with floppy airways, it is just the fact Gideon's trachea is still small/ narrow and the concern is if he were to get sick, and the area inflamed, we would be in a bad situation very quickly. He wants us to have a scope with our ENT and get his opinion before we decannulate.

So this week we had ALL the meetings with our doctors. We met with craneofacial yesterday in one city and then drove to another to meet with pulmonology. And then today we had a virtual call with our ENT & Aerodigestive team.

Some things we brought up to our craniofacial surgeon are that Gideon still has a fistula in his palate (very common for kids with cleft repairs to develop these post repair) and whenever he has gotten sick this past year, he gets food and congestion up in his nose more easily and it makes it very difficult for him to breathe. He said it is very reasonable to attempt to close that - so we will be getting a call next week to schedule that surgery. Also in this surgery, he is going to take some of Gideon's ear flesh (very small) and put a graph at his columella to strengthen it. This will make a possible rhinoplasty one day easier. And also taking advantage of Gideon still having his trach to do this surgery.

Our pulmonologist is on board with these plans!

We met with ENT today and explained some problems that arose this summer. We believe that Gideon has granulation tissue again inside of his trach, this time near the trach tube itself, and causing some moments of distress in him recently. We did resume something called ciprodex drops (very common for kids with granulation tissue) to the trach site that HAS helped with the distress we saw by shrinking the tissue overgrowth. He is in agreement that he needs to take a look this fall at Gideon's trachea and airway. And then he also mentioned looking again in the spring, leading up to the decannulation. He said if his adenoids were still enlarged in the spring, it is a possibility to remove them if we wanted, but that he is breathing fine with enlarged adenoids, it may not be worth it to remove. So another wait and see. I feel like this has barely touched on all the things, but it's a good start! We had lots of medical things to catch up on and embraced them full force this week, somewhat refreshed and ready for the next steps.

Back in June, after Gideon had his scope and didn't get his trach out AND he had gotten a cold soon after, I was given a lot of heavenly peace to let him grow just a little bit longer. There is nothing wrong with letting his little boy grow a little bit more and get stronger! His upper respiratory trach is SMALL and his little nose is so small, that this just gives him a little more time to grow. And I'm ok with that.

Thanks for reading all about our little miracle boy.