An (overdue) update

Summer has flown by. In the best way ever. I feel like we really worked hard to make up for lost time from last year, despite the amount of appointments, therapies, and all the new normal stuff we're having to do as a family.

Gideon enjoyed his FIRST non-medical vacation and I'd say he loved it. We stayed in a cabin in the woods and I mean, there were SO many trees (Gideon's favorite).

First update - palate repair! It went really well, though our surgeon said it was one of the most difficult palates he has ever repaired. Gideon had enough tissue in his mouth for the hard palate (front) and they used a graph of sorts/ artificial material for the soft palate (back). He also needed to create a buccal flap using cheek tissue and secure that across the top as well. Basically all the extra things that were a possibility had to be done. Oh Gideon. He had a big bruise on his cheek for a couple of weeks from that.

We had our post-op appointment(s) in July and August. Gideon does have a small fistula - which is a hole - opened back up in the roof of his mouth. It is extremely common and happened about 4 weeks or so after surgery. We started noticing it when he was using his speaking valve and opening his mouth up wide. That will more than likely need to be fixed in 2-3 years. I believe this will be separate from the next BIG palate surgery which occurs between 5-8 years old.

Gideon has been excelling with his speaking valve and EATING! He is still only really enjoying purees (think stage 1 type food) and soups that I make but that is better than nothing. We just started adding chunks into his food and he is just not a huge fan, so we are backing off a bit and still doing them but a little less. He is up to 4 hours a day of tolerating his speaking valve (more on this in a bit). He loves to yell and then has begun making the "la" sound in addition to just vowel sounds. Which seems like a LOT of progress in a very short amount of time. It's so funny comparing a "normally" developing baby you just barely notice these things happening, but having a medically needy baby you notice every little thing. Honestly it's just more cause for celebrations - talk about slowing down and observing LIFE happening.

For feeding reference we have been loving this brand. The use grassfed meat and organic veggies and the flavor combos are so wonderful for introducing more exotic meals. I have made a few of my own foods for him, but given we need the really pureed consistencies, this is great middle ground until he can start eating what we eat all the time! His favorites, and no surprises here, are the blueberry smoothie, pot roast, bison, and steak kabobs.

And then the biggest update of them all - Gideon's first routine bronchoscopy was yesterday. It wasn't terrible but was not the news we were expecting. Gideon has been doing GREAT breathing, speaking, sleeping off the vent, etc. And our BIG goal is to get him decannulated (trach removed) in the spring. So this is a big first step in working towards that goal. What we were not expecting was to find out that

1. Gideon's left nostril was impassible with the scope/ appeared to be closed up. We have already reached out to our craniofacial surgeon about this.

2. He has a pretty big granuloma sitting above the trach that is an 80-90% blockage, which could be reason why he has NOT tolerated his speaking valve as smoothly as he could or should be. Also, who wants a giant piece of tissue blocking their windpipe?! The tough part of this is that he will need yet another surgery, and not locally, to have it lasered off. I think this was the hardest one for us. We want and need less surgeries for our little guy. It was also hard to believe because of HOW well he has been doing. Even our pulmonologist was confused by it.

3. He had significant inflammation in his trachea/ lungs. Now he's been asymptomatic, which is great, so this could be anything. I myself have had some sort of respiratory thing the past 2 weeks, which felt more like irritation than being sick so maybe it's the same. They do want to treat for this.

4. He still saw a lot of malacia in Gideon's left lung/ bronchial chambers. Again, he has been breathing great, doing all the things, so maybe he just has malacia, but this is no longer believed to be the source of what happened last year. It's more of a fact than a cause.

So we have some bumps in the road ahead but we still will sit here and work on all the things and pray that this granulation will shrink before we know it and it will become a non issue and/ or the surgery will be way easier than intended. I will say that a lot of these things are commonalities with kids with trachs. In other words, if he didn't have the trach, he wouldn't have the granulation. More reason to continue working hard to get that thing out in the next year. We are certain Gideon is ready for it very soon.

We enjoyed racing at the Run4Love 5K - to raise awareness and funds for free cleft repairs across the earth. Read more about Phillip's story and them here.

It was loud, but he got to celebrate his friend Zeke turning 1!

We saw Giraffes IRL!

Ice cream on our vacation