Visit to the Geneticist

I took Zoe to see a Geneticist on Tuesday. Basically it was a just a visit so that we could have one in the area who is aware of Zoe and her Russell-Silver Syndrome. We didn't really learn anything or do anything that we haven't done before (here's the post about her previous Geneticist visit if you want a refresher: the one titled Geneticist). But this is actually a good thing.

I told the doctor at the end of the visit that it's always a good visit to me when the doctor doesn't freak out when he/she sees Zoe (how small her body is and how big her head is) and doesn't send us right to the hospital. I think this fear stems from the one time that we did get sent straight to the hospital (here's the post about that if you want a refresher: the one titled "Never a Dull Moment" Post Update). But this doc was really great with Zoe--of course she was, she's a Pediatric Geneticist and sees 'abnormal' kids all day long and loves it!

There were three specific things that I really liked about this doctor:

1) Her tape measure was a green dinosaur and the measuring tape was the tongue. So every time she pulled the tape out it was like she was pulling the tongue. And before she used this to measure Zoe's head she let Zoe play with it and made sure Zoe thought it was funny that it was a dinosaur with a 'tape' tongue. So Zoe was giggling by the time the silly tape was being put around her head.

2) Instead of just grabbing Zoe's hands so that she could look at them, the doctor tried getting Zoe to giver her a high five or play patti cake (so Zoe would voluntarily hold her hands up). Zoe hates it when we grab her hands, poke at, and touch her (and it's happening to her all the time with all the doctors she sees), so it was really heart warming to me that the Geneticist was obviously conscious of that.

3) Tuesday was the first time that I really had the cause of Russel-Silver Syndrome explained to me by a doctor. She pulled out a big book with pictures of chromosomes in it and she explained to me (using the pictures--I'm totally a visual learner) the process of what was supposed to happen and then what is understood happens with RSS kids. It was great. I'm so glad I took a genetics class recently (about 2 years ago). We really do understand what RSS is thanks to The MAGIC Foundation (if anyone is out there looking--they help with all growth disorders not just RSS!). It was kind of nice though to have someone explain the chromosome part in person.

So it was a good visit. We probably won't see her again for a year because we don't need to. We'll see our new Endocrinologist next month and she probably won't have any new information to give us either until Zoe gets closer to the 2 year mark--that's when we'll really start discussing Growth Hormone Therapy.

Oh yeah, and Zoe has gained 2 ounces since last Monday. Yessssssss.

Also, on Sunday we switched Zoe from the Zantac that she has been taking for her acid reflux to Prevacid which was supposed to be more gentle. But all day Sunday and Monday Zoe was having major stomach problems--bad diapers and was in hunched over, crying pain. So I called her Gi on Monday to explain the symptoms and he said it sounded like she was having really bad stomach cramps. Poor thing. She was so miserable. So, we're not doing the Prevacid any more but we're also not doing the Zantac. We want to see how she handles not being on anything (except the Periactin to stimulate her appetite). So far she's doing really well! No spitting up or throwing up yet. This is great news because so many RSS kids have so many stomach problems and we were mentally prepared to 1)be on Zantac (or other type of medicine) for a LONG time; and 2)deal with other stomach issues that might present themselves in the future. So we'll see what happens. Our fingers are cross.