More cheerful news in my Inbox:

Little bit of back story first:

pretty much no one does a prosthetic for VPI in children because it requires so much parental supervision to make sure it fits correctly, you must get them resized, hygiene issues, the actual placement of the device in their mouth:

An obturator. Horrible isn’t it?

 

I am pursuing  the prosthetic since it is in fact a viable option and alternative to surgery (a surgery which at the earliest wouldn’t occur until Josie was over 4 anyway). I don’t know why in the mean time we can’t try this. It isn’t invasive and we could just decide it isn’t helping and quit it, but why not try all the available resources? I mean, right?

The texts and studies and journals I’ve scoured basically just say they are not offered because it takes more communication and effort (in other words) and kind of like how they won’t send a kid home with an ng tube from Shands, craniofacial there just “doesn’t do” the prosthetic. So I was like, well I did my homework but I guess they just “aren’t done.”

Well enter genius Dr Steirwalt at FSU. She said, well I don’t see why we shouldn’t try it. So there was a lot of go-round and back and forth from her and me and Shands. Ginny Dixon Wood (22q expert / SLP / Clinician Head) called me and hyped up surgery and said that the obturator would just make her feel awful and its hard but right now all we can do is wait til she’s older.

Despite that Josie’s speech has hit a huge stride and she really, really wants and is trying to talk. Frustrating, right?

So I got this email today about it:

My name is [student I omitted name for privacy], we met once last fall when I came to your home to do a story book reading with your daughter. I was happy to hear that you were interested in continuing therapy for Josie, and I volunteered to be her clinician this semester. I was emailing to see what your availability would be to start up therapy sessions again this semester in the FSU clinic. We have a new, beautiful building that is finally ready. I’ve also spoken with Dr. Stierwalt and she had some more information she would like to pass on about non surgical options and additional service providers, other than Shands. Danielle and I will be working with Jose. I’ve spoken with your previous clinicians and am up to date on their procedures. I’d love to speak with you over the phone to see how Jose is doing…

How awesome! Right!? Today was just a really great day. And lately Josie has been taking all sorts of metaphorical and literal leaps forward in therapy!

I’m very proud of her. I really, really, really pray her next heart check up is cheerful and her g tube stoma doesn’t need any surgery, and we will be set for a while! Plugged in to all the right people.

 

Sincerely,
Mom who advocates her ass off and fights for her kid’s best interest tirelessly — aka — a Special Needs Mama

 

P.S. Go Noles.

BIG DAY!!!!

Have / Had a billion things to do today. Thankfully trekking to Gainseville wasn’t one of them. Twice this month, Shands has come to see us – and boy is that nice!

We saw Genetics two weeks ago and that got the ball rolling. Tons of lab work, x rays in our near future to check out her neck, and of course since we reported we hadn’t used Josie’s g-tube in quite some time, they scheduled a surgery clinic visit.

So today I asked about 10 billion questions, Brian and I agreed, and Josie’s g-tube / button got pulled!!!

G-tube free, baby. 

She’s had it since she was a month and a half old. When we finally took her home from the hospital she had it in. We’ve essentially never known her without one — so really huge deal!

So today, Josie was commended for her chillness, some “best patient ever” comments were made and we walked out with a new kid!

Okay same kid, but compared to where we’ve come from when Josie literally took nothing by mouth and had such severe oral aversion we weren’t sure she’d ever eat by mouth, new kid

Now I just ask some prayers we don’t have to add another surgery in a couple months. They gave us two options today before the button got pulled.

1) Being we’d schedule a surgery for her g-tube removal (and said otherwise she’d have “2 belly buttons”, eh cosmetic issue) and that a surgery would definitely close up her stoma guaranteed.

Or

2) Take it out now and let it close up on its own with a 50 / 50 that she’d need the surgery to help close it the rest of the way. We obviously opted to go the hope and see route. She’s had it over three years now, so while it will close up 99% on its own within a few hours, it could still leak and not heal quite right. They said < 2 years and you have about 100% rate of closure, and > 5 years 100% chance you need surgery, so we’re in the middle – fingers crossed, prayers please!

It is certainly adventurous being the parents of a special needs / medically complex little girl — but we are on cloud 9 right now.

Prayers all goes well from here on out with GI please!