It's been a while since I updated you on Manny or Zoe. I was holding off until I had news and news just never came ... until today.
Manny: we went to the geneticist expecting to get the results of the muscle biopsy. We know the initial diagnosis was made back in April but that wasn't the full report. Uh ... the geneticist didn't even have the initial report yet! So I told HER what his diagnosis was! (They even commented, "We should pay YOU for this visit!") So there is no news still with Manny.
He is going to be 2 in less than 2 weeks ... stay tuned for ways you can be involved in his birthday celebration. We intend to do the balloon release again!
Zoe: She finished the school year off just fine. No troubles. Amazing new teacher. And the principal is pretty sure she has a good fit for Zoe next year. Luke will get Sam's teacher from this year. Sam will get Kaley's teacher from last year.
Last Monday, Zoe had the VPI study done to see if her Pharynx is making contact with her palate like it's supposed to. It was very clear even last week that it wasn't. I just didn't have the full report or the "therefore" until today. So we went to the surgeon.
But while we were there, we were led into a waiting room. I think she has about 10 patient rooms. I *happened* to be in the one with a "thank you" gift I'd given to Dr. Ricalde. 2 years ago I went to China and delivered medical supplies, school supplies and shoes/socks to kids in Northern China. Dr. R was a sponsor. As a gift, I gave her a picture frame with kids in it that we'd donated to. I made sure to give her all pictures of kids with clefts. The pictures were random though.
As I walked into that room and saw the photos displayed proudly, one picture caught my attention. "Claire" ... a little girl who has JUST been matched with a family. I'd prayed for this little girl for so long since I'd met her. I was thrilled to be able to tell the Doc that this little girl was coming home!
While in the room, Zoe had to use the restroom. We opened the door and it just happened to be across from the receptionist exit area. Tara and her son Clayton were there checking out! Too funny. 1 minute later or earlier and we would have missed each other. Zoe and Clayton have never met. Both adopted from China, both with clefts, both 6. We'll get together soon I'm sure.
But the other part is that I'd written the cleft book for Zoe ... I had asked Tara for a picture of Clayton to put in the book and she graciously agreed. So I had the book with me. She got to see the mock up version. I'd brought the book so Dr. R could look at it and give me her feedback on it.
I left the book with her and she seemed excited to read it! I'm thankful for Dr. R's feedback/endorsement on it as I'm hoping to sell the book to organizations that help cleft affected kids.
And as far as that goes, the book is written. The artwork is basically done. There are very few steps until it will be printed and ready to go. I'll need help with ideas, fulfillment, website updates, marketing, etc. So heads up now that I'll be seeing who can do what to help with that project.
OK ... so eventually we got to the actual reason we were there. Bottom line ... Dr. R. said we had basically no choice but to do the surgery. Anatomically, she will never achieve "normal" sounding speech without it. WITH it, she likely will. We also looked at the panoramic view of her teeth to determine how soon the bone graft needed to be done. Dr. R's first choice is to wait about 6 months ... in the meantime, do some expansion on her palate (in the front mostly) and do that surgery then.
When she looked at her mouth, she noticed the abscess on her tooth ... and I told her Zoe actually has two and that she'd been on antibiotics for 2 weeks. Dr. R. said then she needed to do the surgery ASAP. Maybe as soon as Thursday if the Dentist can work it into his schedule then. (We'll know tomorrow.)
So in summary ... I am not happy. We'd prayed and hoped she wouldn't need this pharyngeal flap surgery. But she does. (sigh) And I always face ALL surgeries with this same thing of, "Should we or shouldn't we". I trust this surgeon. I trust her opinion. I trust her skills. I just don't want my little girl to suffer.
Zoe? She asked on the way home, "Can we do the surgery TOMORROW???" She knows it will hurt. She knows it means 3 weeks of soft foods. She knows she might not instantly sound like the other kids. But she also means there's a chance for her to sound better. She knows her teeth will stop hurting for a while. She's ready to go!