A Little Luca Health Update
There’s been quite a bit going on over here in Luca land, so I wanted to give an update on how he’s doing and where we’re at in our journey.
We got some good news!
Some days it feels like good news is pretty rare around here. But we recently got back the results of the spinal MRI that was done as a follow up to Luca’s surgery last year and they were very good.
Our neurosurgeon gave Luca a (mostly) clean bill of health in the immediate future regarding his spine. The cord tethering that they released last year remains untethered (yay!) and the fluid (syrinx) in his spinal cord remains stable and very minimal.
We’ll plan to see his neurologist again in a year and as he gets older, we’ll likely start doing x-rays to follow his spine curvature due to the congenital fusion of his 2nd and 3rd lumbar vertebrae.
All in all, we’re very happy about those results and were happy to hear her say, “See you in a year!”
Still waiting… waiting… waiting…
We’re still waiting on the results of Luca’s additional genetic testing. If you remember from my initial An Unknown Journey post, we’ve done some initial genetic testing and it all came back normal. So we decided to move forward with a test called Whole Exome Sequencing, which essentially looks more closely to see if there are any genetic variants in his DNA.
We should hopefully hear back on those results in the next few weeks! Cross your fingers for us.
We’re looking closer at GI things
We saw a gastrointestinal specialist for the first time this week, which seems crazy since Luca’s been having GI issues since birth.
He’s had some pretty major issues with spit-up and reflux, but now our difficulties are more around gagging, choking and vomiting during eating. It was definitely time to start looking deeper into what’s going on, not only to get Luca in a place where he’s eating more successfully, but to also alleviate stress for us. Feeding time with Luca is incredibly stressful and disheartening. But after seeing our GI doctor, we’re so hopeful for the future.
It’s pretty funny whenever we meet new specialists. When they walk through the door to meet us for the first time, they’re introduction is usually something like, “Well, I read through Luca’s medical history. Wow. He’s a VIP around here.”
After learning about his very, very full medical history, he recommended tackling Luca’s situation from every angle.
We’re starting with an endoscopy of his upper GI tract and colon next week. This will tell us if he’s experiencing any irritation in his esophagus related to eating or drinking. He also struggles big time with constipation, so this procedure will also help us understand if there’s anything going on with the way he’s processing and passing waste.
The second thing we’re going to do is a swallow study (our last one was normal, but it was about a year ago and a lot has changed since then!), so see how he’s swallowing. He tends to gasp when he’s drinking water (this is relatively new) and has extreme difficulty swallowing thicker foods, so we’re pretty anxious to see if there’s anything “new” going on with his ability to swallow.
The final thing he referred us for is a consultation with the Feeding Disorder Clinic at Phoenix Children’s Hospital. I knew nothing about this clinic before our appointment, but am super hopeful that we qualify and can get in to work with these specialists because it sounds AMAZING and their track record is great too.
The Feeding Disorder Clinic first does a consultation where they get the low-down on his medical history, observe him eating and drinking and playing. They also instructed us to provide videos of a few different activities, just in case he has stage fright during the consultation. We’re doing this consultation next week too.
If we get into the feeding program they have, it’s pretty… intense. It generally is every day for 6 weeks, followed by twice a week for 6 weeks and then twice a month for 6 months. It feels overwhelming already, but honestly the overwhelm that possibility brings is nowhere near the stress and anxiety we deal with on a daily basis around his feeding. If that program can help propel us forward, I will sign on in a millisecond.
They accept about 70% of the kiddos they see for consultations into the program, so we should know more over the next couple of weeks if he’s accepted or not. Fingers crossed on this one too.
Other than that, we’ve got a few follow ups in the works for Cardiology and Neurology. And we continue our weekly PT, OT and hippo-therapy sessions. We’re pretty tired, but we see so much progress happening on all fronts and we’re feeling renewed excitement for the future.
And with that, I leave you with this video of Luca trying so very hard how to figure out how to crawl! Exciting stuff going on right here.
Thanks for following along with us!