Sunday, August 11, 2013

"Fun" with Doctors

This past week included all kinds of catchup on medical appointments and testing for all the "D" members of the family: Daryl, Debbie and Davis. On Tuesday we spent the morning at Shands in Gainesville doing pre-op for Daryl's August 21st ear surgery. The hole in his eardrum is still there and they are planning to do a skin graft for it as well as replace the damaged middle hearing bone with a titanium one. Surgery should be outpatient and last about 3.5 hours. We won't know the time until the afternoon before. Thursday morning I went back for an ultrasound to follow up on my abdominal pain issues, which are not currently a problem but still need to be checked out given my family medical history. The tech did not seem very concerned and I should get a phone call with the results in the next few days.

Davis finished up all his baseline medical stuff this week as well. On Monday, we received a phone call letting us know that all of his blood test results (remember those 8 vials?) came back the way that they were supposed to. That means he tested negative for a bunch of standard rule out things (like HIV and hepatitis), was not anemic and had all of the vaccination titers they were looking for. This proves Davis received the vaccinations that his shot record said he did, that the vaccinations were effective and that  they will not need repeating. That is super good news! Wednesday we went to the health department so that he could get the skin test for tuberculosis and we got that read on Friday and everything came back fine. 

Thursday afternoon was our biggest medical day with Davis though, back at Shands, this time for their Craniofacial Team's Cleft Clinic. While we were still in the referral stage of our adoption, we contacted a couple of different hospitals about working with them on monitoring Davis' cleft lip and palate. We decided to go with Shands because of their excellent reputation and close proximity. We found out later on that another clergy couple we know has a son who is a patient with the Shands Craniofacial Team and they are very happy  with their experiences over the years. The team coordinator was super to work with in getting our appointment set up. They only do clinic 1 Thursday a month and we were originally set up for the Thursday after we got home. But while we were in China the coordinator emailed us to say she wanted us to wait until August, so Davis would have more time to get acclimated before we brought him in.  The best thing about clinic is that you get checked in and put into an examination room that is yours for the afternoon and then all the doctors on the team rotate around to visit you. In the span of 2 hours, we saw the coordinator for paperwork, plus 9 different specialists from the team: Genetics, Pediatrics, ENT, Social Work, Psychology, Pediatric Dentistry, Oral Surgery, Plastic Surgery and Speech Therapy. Everyone was very gracious and sensitive in working with Davis and his aversion to doctors and examinations. They took time to explain things to us and allowed us to voice concerns and ask questions. Here's the rundown. 

1) Genetics - About 15% of cases of cleft lip/palate are part of a larger syndrome, often associated with cognitive issues. Based on her physical evaluation and the way that Davis was interacting with us, Dr. Stalker believes that Davis' clefting is isolated and is not recommending any further genetic testing at this time.

2) Pediatrics - Dr. Nackashi was very pleased with Davis' overall health and development. He is tiny but his height and weight and head measurements are proportional and he seems to be hitting more developmental milestones than they expected given that he was in an orphanage for the first two years of his life.

3) ENT -  Audiology wasn't there for a hearing test today, but Dr. Silva said Davis' ears looked good. The right one that he favors seems to have some wax buildup and we can put in some mineral oil drops once a week to help soften that up. He does not appear to have issues with fluid buildup in his ears, nor scarring from recurrent infections.

4) Social Work - The social worker introduced herself to us and made us aware of assistance programs for helping with expenses of traveling - which really doesn't apply to us right now since we live so close, but many families come in from all over the state. She also helps facilitate some online groups to help parents stay in connection to each other. There were 5 adopted children from China being seen by the team today and she introduced us to another family who has an almost 3 year old daughter that also live in Marion County.

5) Psychology - Dr. Boggs came in and asked some questions to get to know our family a bit. He is more of a resource for families as needed and especially for the kids as they get older and deal with medical procedures and any issues they face associated with their appearance.

6) Pediatric Dentistry - Dr. Adewumi  said many cleft kids are missing baby teeth and Davis has all of his, although some are not in the "right" spot. We do not have to do anything with placement at this time. He has a couple of cavities and we need to see our own dentist to take care of these and have him work in conjunction with their team for care. Kids with clefting are apparently more susceptible to cavities so we have to work harder to keep them at bay.

7) Oral Surgery - We mentioned that on a couple of occasions things from Davis' mouth leak out his left nostril. While his palate was repaired at 9 months old, there is a small hole (fistula) in the roof of his mouth that still connects to this nostril. As long as it doesn't bother him, get worse or affect his speech, Dr. Walther says we don't need to do anything with this until around age 9 when Davis will need a bone graft surgery - this will be to put bone in the roof of his mouth where the bone was missing because of his cleft, so that his adult teeth will have a better platform for coming in.

8) Plastics - Dr. Lentz said his lip repair looked very good. The extra piece of skin behind his lip is typical and was left in case he needs an additional graft in the future. If he doesn't need it and/or it starts to bother him, we can always have it removed in the future. 

9) Speech Therapy - Since Davis is still working on English, Ms Kirby had us work with Davis to get him to repeat some words for her, concentrating on specific sounds - p, b, g, t, r, and d. She was very pleased with how he sounded in trying to imitate these words. That is a good sign for his palate repair and his future speech development. For now, rather than recommending any kind of speech therapy, she just wants to continue to monitor how he picks up English in the coming months.

After all of the families left today, the team was supposed to gather around to share their thoughts and findings with one another. We will receive a written evaluation within the next week or so detailing everything discussed and talking about when we should schedule to come back again. We were very, very pleased with how smooth everything went today. Where else could you see 9 specialists inside of 2 hours? We could hear the doctors out in the hallway prepping the next person before they came in and everyone greeted us by name, knew Davis was recently adopted and most importantly, interacted well with Davis. We came home with an entire sheet of contact information covering every doctor on the team with instructions to call or email between appointments if we had any concerns or questions. We are looking forward to a great working relationship with the team on Davis' health in the future. 

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