Damian's 3rd Surgery

With our latest massive fundraiser, Damian's Not-So-Haunted House, well underway (tonight will be night 3 of 10 total nights!), all the social media content lately has been of me making all the new additions to our Halloween walkthrough - which has been SO fun!

But of course, there has been a lot of other things happening behind the scenes:

Our new wheelchair

We finally received Damian's custom wheelchair (a frustrating 3-year process) - it fits him pretty well, with still plenty of room to grow, which means it's time for Valentina (a previously-owned wheelchair donated to us a couple years ago) to go to a new home!

It's amazing to see side-by-side photos from when we first got to bring home Valentina almost exactly 2 years ago, in October 2022, with photos of Damian's made-for-him wheelchair now! My little guy has grown so much!!

Aquatic Therapy

We've also started aquatic therapy!!

This has been something we'd been hoping for for years! It's incredible to me that Southern California, of all places, does not have aquatic therapy readily available everywhere. There is such a great need for it here!!

I was talking with Damian's physical therapist about it a month or two ago and how I was about to bite the bullet and just try to get Damian signed up for an expensive class over an hour's drive away (our most feasible option!). With Damian's low muscle tone, I just knew regular time in a pool where his whole body could receive such complete support would be wonderful for him! Turns out, a physical therapy student at our clinic (who was shadowing Damian's PT while I was talking to her) happens to be on her college's swim team and occasionally taught regular swim lessons. I practically jumped on her and begged her to let Damian be her first aquatic therapy client! Luckily for us, she was really excited about the idea too! We've been meeting with her weekly at a friend's pool/hot tub ever since! And it's been just as great for Damian as I imagined it would be!!

Damian is a total natural when it comes to floating on his back and if it weren't so vital that we hold Damian's head (to make sure he doesn't choke on water), he probably could float all by himself!! And it's been SO good to see his body relax in the water - after some good stretching and floating, we've been able to completely straighten his spine (for the first time in at least a year, maybe more!) and I can only imagine how good that must feel!!

And not to mention Damian LOVES being in the water! It's been so fun to watch him kick and kick and kick off the walls and concentrate so intently on what we're doing (a lot of PT-esque stretching and movements). It makes me so happy to see him enjoy it, just like I knew he would!

...which makes today very bittersweet because we'll be going to our last aquatic therapy session before going on a 6-week hiatus.

Damian's having surgery

Yesterday we had a bunch of pre-operation appointments at Children's Hospital to prepare for Damian's surgery happening... tomorrow (Friday).

We've been talking about the potential of doing this for a few months now. You might remember Damian wore a set of casts on both legs awhile back to try and guide his ankles into a neutral position. When we took them off 2 weeks later (with the intent to put on another pair), we noticed that his poor little ankles had been rubbed raw because the tendons were pulling his feet in so tightly against the casts.

There was simply no more effective way to fix this, Damian's orthopedic said, than to surgically adjust a few tendons in Damian's feet.

Damian hasn't been able to wear his leg braces or stand up in his standing frame for several months now because his feet have just become so stiff in a turned-in position, as if he had club feet. And like some cases of club feet, surgically adjusting the tendons can make all the difference.

It was not a decision we made lightly to go ahead and agree to do Damian's third surgery (the first two being his IV-port placement and his G-Tube aka feeding tube placement). I try to limit Damian getting anesthesia as much as possible, obviously. And I hate hate hate thinking about knives going anywhere near my baby's precious skin, let alone the discomfort and pain Damian may feel after the surgery.

But every surgery Damian has had has greatly improved his life. And the likely benefits of this surgery may be another game changer for him. He hasn't really been able to push weight through his feet in several months - and his legs have always been the strongest part of his body. One of the best ways to combat Damian's disease right now (while we fundraise for a brain treatment) is to help strengthen his body through exercise as best as we can. And we have been really limited the past several months with exercising Damian's legs because we've been fighting a losing battle trying to keep his feet in a neutral position.

As Damian's doctor explained the surgery to me yesterday, it seems like this surgery will be a pretty immediate fix. As they relocate the ends of, and even lengthen, 4 different tendons in each foot, they'll see the tendons immediately pull Damian's foot into the ideal position. And because there is nothing wrong with the bones themselves, the doctor said that as soon as Damian is comfortable bearing weight, we can start standing right away, even in the casts.

Likely, the doctor said, Damian will have pain in his ankles for only a couple days, but after that he should be comfortable in his casts, which he'll wear two sets of over the course of 6 weeks.

I'm glad that I've had time to really think about this surgery and talk to people I trust about it, because I do feel good about it now. I am a bit of a ball of nerves just about the surgery itself, but I am really truly looking forward to the benefits everyone seems really confident we will experience post-operation.

My sweet little Damian is such a trooper and I'm sure this third surgery will be no different when it comes to his bravery and optimism. I'll be so so glad when it's behind us though.

Thank you so much for your prayers - we will take as many as we can get!!

<3