Raya had her consultation with the orthopedic specialist today. We've had it scheduled for about 3 months now and I was glad to finally get it over with. It was at the clinic where she's seen for cerebral palsy, and for many reasons I dislike going there. It's really far away (like about an hour each way, longer if there's traffic) and the clinic is dirty and we don't really get to choose our appointment times. (at least not for the first visits with the different specialists.) They just mailed us appointment cards and we showed up when we were told.
Okay, so here's where the frustrating part comes in. Raya's CP is very mild. I get that. We've always known that. I've also said before that if she didn't actually have it, her doctor wouldn't have diagnosed it. Doctors can't just make up diagnoses for patients. We also know that she has made great progress with physical therapy and occupational therapy. The OT has greatly improved how well she tolerates PT, so the PT is more productive and she has made a lot of progress. I said going into this appointment that this would be another one of those doctor appointments where they walk in, look at her, and say, "Aaaaand why exactly are you here??" And that's pretty much how it went.
First, we went into the exam room and since it was our first visit to the ortho clinic, a physical therapist came in to ask some questions and look at Raya a little. The questions she asked didn't bug me as much as the way she asked them. She asked me if Raya can walk and when she started walking, and I told her I couldn't remember exactly but that it was around 1 year. Her reply was to grab Raya's foot (that Raya was sticking out at her) and say, "Well you're not a typical CP kid then, are you! Typical CP kids don't walk at a year." Then she asked me some more questions and had the same type of responses. Then we had to talk about the fact that Raya has very little chance of qualifying for preschool, which I am well aware of.
As we talked, her demeanor kind of changed and then she said, "Who exactly diagnosed her with CP and on what basis was the diagnosis made?" She was filling out a form and asked me the names of Raya's therapists and then asked, "She's not with DDD, is she?" (DDD = the department of developmental disabilities) And then, "She doesn't have ALTCS, does she?" (ALTCS = state long term care insurance for people with developmental disabilities) Then when I replied that she does have both of those, she didn't make any effort to hide her surprise. It really irritated me because A. If she wasn't DDD/ALTCS, we wouldn't even BE at that clinic, B. If you want to know about her diagnosis, ask her neurologist instead of putting me on the spot with all kinds of questions that I don't know the answers to, and C. The child you're seeing right now is the child who has had a full YEAR of therapy since the diagnosis was first made, so yes, she does look great now but it's because we have all been working hard to help her improve. Oh, and when she asked me what therapies she gets & how often, I told her she has PT but we just decreased it to every other week and she said, "Why is she only getting it every other week?" Um, weren't you just the one telling me how perfect my kid is and that you don't even know why she was diagnosed with CP and now you're asking me why she's ONLY getting PT every other week?? I've always felt that Raya being approved for DDD/ALTCS was the answer to many prayers, so how am I supposed to justify a blessing from God?
So basically, one doctor tells me my kid has CP and we start therapies (which she DOES need) and then we go through the grueling process of applying for & getting approved for ALTCS, and THEN when we show up to the appointments at the CP clinic that we didn't even ask for, suddenly I'm on trial having to justify to someone I just met why we deserve to be there. I felt like a deer in the headlights or like I had shown up to take a big exam without studying for it. Of course now that I've been home for a while, I can think of all kinds of brilliant answers & explanations for everything. We see things at home that might not be totally obvious in the 5 minutes that a total stranger spends with Raya in an exam room. I hate being put on the spot and it was kind of embarrassing. UGH!
Then after that, a nurse practicioner came in and it was a slightly less irritating version of the same conversation minus the part about acting shocked that she was DDD/ALTCS. She was more polite with the way she asked me questions & talked to me. She said she'd have to ask the doctor if they could do Raya's cast or not since it wasn't related to CP and at that point I didn't care if they did it or not, I just wanted out of there. She watched Raya walk a little and once again I stumbled through my explanation of what our observations have been with her legs & feet and then she said to wait and the doctor would be in.
That was the point at which Raya's meltdown started. Did I mention that Raya had decided to have a poopy diaper instead of taking a nap? Then she had a feeding therapy session and we had to book it to drop Kaida off at a friend's house and get to the appointment clear the heck in Phoenix, and she never went to sleep once. SO by 3:30 or so, she was done. Luckily when the doctor walked in, she put on her charm again.
And lucky for me, the doctor didn't make me feel self conscious about even being there. He asked what concerns we have and I told him that the only real effect we see of the CP is the increased tone in her legs and that she tends to get really tight in her hip flexors & in her lower legs, which ends up making her feet roll out a little so she walks bowlegged. We recently decreased her PT down to every other week instead of every week, so now after about 9 or 10 days of no PT, we start to see the tightness in her legs. It also gets worse when she has an increase in her GI symptoms for whatever reason, as does her torticollis.
His reply was pretty much that he doesn't think we'll need anything from the ortho clinic as far as bracing or orthotics or anything since her tightness improves with stretching & exercise. He said that they COULD do bracing, but that it would probably just annoy her and it doesn't do anything to improve the problem, it's just like putting a band-aid on it. I was totally fine with that response. I had already talked about that with her PT so that's what I was expecting. I appreciated him not talking to me like the other 2 did and not making me feel stupid for bringing her there.
I don't know if I should even be saying all this but I will anyway. Here's another reason why this is all frustrating for me. Every time Raya makes progress with her non-GI related issues, it puts me in a position where I feel like I have to beg and plead and justify the therapies she's getting. The scary part about it is that sometime, she will get to a point where they will no longer consider her as having cerebral palsy. Of course this is a good thing, but if they take away that diagnosis, she will no longer qualify for her long term care insurance. That means she won't get the OT or PT anymore, and she won't have her secondary insurance that picks up any costs that our primary insurance doesn't cover. I haven't added up how much that's been this year but our out-of-pocket costs last year were about $10,000. Next year, our primary insurance is reducing the really great coverage we've had. If we didn't have Raya's secondary insurance, our portion of her feeding supplies alone would be over $500/month. I don't care who you are or how much money you make, an EXTRA $500/month PLUS everybody else's expenses and all her copays & prescriptions is a lot of money. That's about how much we spend per month to feed the other 5 of us put together, and that doesn't include any prescriptions, copays, or anything else. So yes, there is a financial aspect to it and every time we have an appointment that has to do with CP, it stresses me out because I'm constanly afraid that somebody's going to yank the rug out from under us. Finances aside, losing OT would be horrible for us. It has made her a different kid. I don't know what it would do to her feeding therapy since she would still qualify for that through early intervention, but things have changed a lot with that too so I don't know if she'd even be able to get FT every week through early intervention. So now you know a lot of our personal business, but I think this is one aspect of having a child with "special needs" (if you want to call it that) that people don't talk much about so there you have it.
On a lighter note, the orthopedic doctor was extremely nice and went ahead and had them cast Raya's arm even though they weren't really supposed to do it since it's not related to CP. I had a feeling that's how it would be and I knew I should have just made a separate appointment but I was hoping to avoid an extra appointment. Well, anyway, they took off the splint and made her a cute little purple cast:
|She's showing me her pretty purple cast and saying, "See?!"|
She's feeling better now though and she's very proud of her cast. And her G tube. She's been showing it to everybody lately. :) The splint and cast haven't slowed her down one little bit. Today I caught her hanging from the edge of the kitchen table again even though her arm was stuck at a 90 degree angle in the splint, and tonight at the kids' Chuck E Cheese school fundraiser, the stink pot even climbed up INTO the basketball game that Donny was playing.
We have to go back in 3 weeks to get the cast off & get it x-rayed again and I'm already dreading that appointment. After that, we don't have to go back to that clinic until January when we see the genetics specialist, which I'm seriously considering cancelling because I'm tired of appointments where I feel like I'm having to justify even being there. Then we don't have to go back until her annual CP screening in September. Hallelujah. Until then, we'll stick with our good ol' GI visits. At least those usually leave me feeling like we've accomplished something and everybody's nice to me there. :)