Specialists for Alayna

Alayna's check up today went VERY well :) We were able to get referrals for ALL of the specialists we requested, although we did forget one. Whoops! Joe went back and left a message for the doctor though, and I'm certain it won't be an issue.

So, the specialists we need to see/things that were done today:
1. We've been referred to orthopedics at Shriner's Hospital in Portland, Oregon. This is for Alayna's tight muscles and tendons in her legs, ankles, and feet, her toe walking, and her feet turning outward. We're also going to have them take a look at her hips and her trunk rotates quite a bit as she walks, and her hip joints swing out and around rather front and back (if that makes sense).

2. We've been referred to a pediatric ophthalmologist at the Casey Eye Institute in Portland, Oregon (however, they DO have a clinic location in Vancouver, WA so hopefully we can get in there). This will be to check Alayna's eye sight (which even WITH her glasses on she doesn't even have 20/40 vision), and to check the pressure in her eyes regularly (glaucoma is a VERY high possibility due to her disorder).

3. We've been referred to a pediatric therapy clinic for a occupational therapy and physical therapy evaluations.

4. We will be seeing a geneticist sometime in the next year or so just to keep updated with new developments with Peter's Plus Syndrome.

5. Alayna had a thyroid panel done. 2 years ago one of her levels was elevated, but the other was right in the middle of the normal range. However, due to the one level that was elevated her doctor wanted her rechecked in 3 months and if it was still elevated then he wanted her seen by an endocrinologist. Well, her levels were NEVER rechecked. If she DOES have a thyroid issue it could be the cause of a couple of other issues she's having. There have been several children that we know of with Peter's Plus Syndrome that have thyroid issues and Alayna's mom was diagnosed with hypothyroidism at 12 years of age.

6. We'll need to schedule a full developmental assessment. I'm not sure where or how. We're waiting on our pediatrician to get back to us on that one.

I've called the ophthalmologist office, therapy clinic, and Shriner's Hospital and left messages to schedule appointments. I should hear back from them all by tomorrow afternoon.

***EDIT***
So, apparently our insurance doesn't like to cover developmental assessments. I'm wondering if it'll change their minds if they find out that regular developmental evaluations are suggested to properly treat Peter's Plus Syndrome, we'll have to call and find out :) Anyways, our pediatrician suggested that for now we focus on the Shriner's appointment, the PT and OT evals, and the eye doctor's appointment. Especially considering that Alayna's prescription for her glasses isn't strong enough and we have no idea when her last pressure check was done. He said that we should wait on the developmental assessment until after her IEP assessment. That if we have issues/disagree with the IEP assessments then it'll be easier to get the insurance to cover the developmental assessment.