Monday, June 22, 2015

Shriner's Trip

When Princess started walking, shortly afterwards I noticed that her left leg was bowed. I researched and found that this was not normal. So I asked J, our developmental therapist. He recommended a PT evaluation. Before the physical therapist could come out, we were at the NICU developmental clinic. They told me that they wanted her seen by PT, which we were already on board with. See, Princess W-sits like there is no tomorrow. I hate it. I've been telling her to fix her feet and sometimes she does it and sometimes she doesn't. Well, with all that W-sitting, she lost trunk tone. So then M, the physical therapist, came out and recommended that Princess be seen at Shriner's, the closest and only pediatric orthopedic specialists near us. She really didn't think there was much that could be done about the bowed leg, but thought that at least they would be able to say definitively if there was something they could do. M gave us exercises to be doing with Princess and we started doing them. Most of them we had already done when Princess had come home from the NICU, so it was just reintroducing them.

After meeting with M, I made an appointment with Dr. M, Princess's pediatrician to get the referral to Shriner's. Princess's previous pediatrician, Dr. J, was GREAT about getting us referrals, so I didn't think anything about it. How wrong I was. Dr. M completely pooh-pooh's me and makes me think I'm an overbearing mama. She says that she's not going to write the referral because as long as Princess doesn't have a vitamin D deficiency or any other issues, that she would out grow it.

It didn't dawn on me until I got home that vitamin D could be a kidney concern. Thankfully we were seeing Dr. H two weeks later. When I brought up the one bowed leg to her, she added on a vitamin D test to our normal labs. Turns out Princess WAS vitamin D deficient, like majorly! So we added vitamin D supplements to her daily medication. It was like 3 times the regular dosage for a toddler!

In between seeing Dr. M and Dr. H, I finally got the recommendations from the NICU developmental clinic. I noticed that they sent it to Dr. J, Princess's previous pediatrician, so I was going to call them and get it sent to Dr. M. So, as I was reading through the paperwork, I skipped to the part where I knew Princess needed to work on. In there it said "Refer patient to Shriner's." So I picked up the phone and got the NICU developmental clinic on the phone. In telling them Princess's new pediatrician's information (of which I was sure I had told them when we were there), I also mentioned that we had just been in to see the pediatrician and she didn't want to refer us to Shriner's. They were shocked to say the least. They said they would write the referral.

Now, this all transpired between October and November of last year. After having two different people tell me that Princess needed to be seen at Shriner's, we finally got our appointment. The information came in January. It was a little scary seeing the paperwork say she was being evaluated for cerebral palsy, but when the referral comes from the NICU developmental clinic, I guess that makes sense. Our appointment was the beginning of March.

Now, here's the thing, usually when we get these new appointments I have absolutely no clue as to where we are going. Not this time! I knew exactly where the Shriner's hospital was at. It's right in between the children's hospital and Princess's nephrologist! Well, of course, Meme has to come so she insists we leave way early. No biggie. We're there like an hour early! Thankfully this hospital is SET UP for kids. Our little waiting area had a little table and books and couple little things for the kids to play with. When we finally get back there, Princess gets to sit on a weight chair (why don't ALL her specialists have this thing?) and we get an actual standing height! Then we got to wait. This is typical for just about any specialist we have ever seen!

Then the assistant comes in and takes Princess's history. I guess she's pretty rare in being an ex-28 week preemie and not having any major complications. I mean, sure she has eczema and sees an ophthalmologist, but beyond that, her specialists are for her disease. Then after she's done, we wait some more. A nurse comes in and says that they want x-rays. So we follow her to radiology. I take Princess back there and they want a standing x-ray of her hips. Oh yeah, this ought to be interesting! So I get all covered up, the technician gets everything set up and then we plop Princess on the step, snap the picture and get down. Thankfully they got it the first time! The other technician gives Princess a Scooby-Doo sticker and then notices that she has "Tinky Nee" (her stuffed giraffe) with her, so she goes and finds her a giraffe sticker. You would've thought the girl had been given a real giraffe with the way her face lit up!

So then, back in our room, we wait some more. Finally Dr. D comes in. He is like SO wonderful! He talks to Princess. Shows her the picture of her hips. Checks her reflexes. Then he has her walk up and down the hall. The bowing is better than what it was, thanks to the vitamin D she's been on! So that she will likely outgrow. The other concern I had was that when she walks, she rocks her left ankle out. Dr. D seems to think this will self correct, but she may need an orthotic just to remind her. He was also concerned that her reflexes were still really easy to solicit. He was concerned that she might have a very mild case of Cerebral Palsy. Like it would be so mild, Princess wouldn't qualify for services. So we go back in six months (September) to see how she's doing.

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