During our SATB2 conference in Little Rock, Arkansas 2 weeks ago, we had the privilege of participating in the first ever SATB2 clinic! Dr. Z (the geneticist that is heading up the SATB2 research) organized it for the families who would be attending.
After filling out some paperwork, we were taken back to a room where different teams/ doctors/ specialists would come see Chelsea. We had an early 8 am appointment, so we didn't have to wait a long time.
The first person to show up was actually the program coordinator, and she briefly explained how the clinic would work, and who we would be seeing. She also said that we could get bloodwork and dental x-rays done that day too, if we wanted.
Chelsea played a few games while we waited for the first team of doctors to show up- family name matching and drawing.
The ENT team was very nice- looked at Chelsea's ears, nose, and throat, and asked some questions for research, but I felt like we weren't very helpful. Chelsea has been super lucky, and never had an ear infection in her life, no breathing difficulty, nothing. So they checked her out, said that everything looked good, and left after maybe 5-10 minutes.
We had to wait a little longer for the speech pathologist. Fortunately, we had a big backpack full of games, and Chelsea was happy.
The speech pathologist and Chelsea got along very well, and this was the longest appointment we had. The SLP let Chelsea look in her mouth before trading "jobs" and looking into Chelsea's mouth. SATB2 kids usually have a cleft or high palate; Chelsea's is high. She used to stash food there for ages. Gross!
After checking out her mouth, she got out some flipcharts and had Chelsea identify objects, starting with nouns and colors, then moving up to verbs and more complex words like "find 'around'". But Chelsea worked hard and did her best!
We discussed what we have done for speech therapy (PROMPT, oral-motor, K-SLP apraxia, frequency, length of sessions, PECs, visual cues, ASL...)
We had about a 30 minute wait after that appointment, which was plenty of time to take Chelsea potty and feed her some snacks. She loved pretending to be a princess on her "throne".
Naturally just after eating her snacks, then dental team came in. They were very nice about ignoring the food I am sure was still on her teeth, and looked at everything, noting about her two front teeth that got knocked out last year, asking about x-rays, etc.
The lady on this team was especially good with Chelsea! She pulled out a little mirror and told her it was Snow White's magic mirror, and Chelsea was super compliant after that, because here was a doctor that knew about princesses!
We got x-rays done, which I had never attempted with Chelsea awake before! The only other time we had x-rays done was when she had her 2 teeth extracted under sedation, and the x-rays we got this time were much better!
I was surprised at how well-behaved Chelsea was for this! She was standing stock still on tons of paper, her teeth clamped around part of the machine (I don't know the name), and staring at me, as if asking "What on earth am I doing this for, Mom?"
The marketing team came in to ask some questions about how the clinic was going, what it meant to be with so many other SATB2 families, and how we liked the hospital. I told them how impressed I was at the level of care Chelsea was receiving, and how hard Dr. Z worked to coordinate everything.
Finally, it was time to see Dr. Z! He looked at Chelsea's hands, feet, and back (she freaked out that we had to unzip her princess dress for about 10 seconds), and asked about Chelsea's history- if she drooled excessively, when it stopped, her seizures, osteopenia, etc. He asked if we had any questions, but I knew he was giving a presentation the next day about SATB2, so I said that no, I was sure they would all be answered the next day.
The very last thing we did was get blood work done to check Chelsea's vitamin levels, but no pictures of that, because at this point, Chelsea lost it. They brought out the needle, and it took me and 2 nurses to hold her down, plus another to draw the blood.
Chelsea gets STRONG when she wants to! I never thought that a 38 pound little girl would be able to hold her own against 3 adults, but she can! Whew! These pictures were from earlier in the day; she was very upset at this point, and as we left, she turned and yelled at the nurse who drew the blood "You MEAN!!!!"
She settled down after some lunch and rest, but she reminds me all the time how tough she can be: