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Tuesday, September 27, 2011

3 appointments in one day

Yep, 3 appointments in one day. I try not to do that to myself but sometimes it's unavoidable. It makes for a long day but after almost 2 years of this, the little girls are used to having a crazy day once in a while.
The first appointment was a weight check at the GI clinic, which we pretty much failed. Raya has only gained 2 ounces in the last month and her height pretty much stayed the same too. Honestly I wasn't too surprised and I'm just glad she didn't lose any. The girl's had a rough couple of weeks!
Since our darling nurse had her baby, my line of communication with the doctor is...hmmm...not what I've been used to, and I'm trying to be patient while new people learn the ropes. I had hoped to meet the new nurse today but we were running late & didn't have time. I think it would help if we could get acquainted.
I had the MA that did the weight check write a note to the doctor about the increase in reflux symptoms, including but not limited to: spitting up a couple times a day, waking up screaming at 4 am, waking up at 10:30 or 11 not feeling well, and a lot of coughing in her sleep, especially when she's lying flat. Compared to other points in the last couple years, that's nothing but Raya's uncomfortable and I figured I'd tell the doctor anyway in case she wants to adjust medications or something. I really need the new nurse's email address. That's SO much easier than playing phone tag over something that's probably just nothing anyway.
When we go to the GI clinic, they always give me a label with her patient info on it to put on her back. She never even knows it's there (which is why I put it on her back! :) but Kaida does. When we got stickers on the way out, Kaida wanted me to put hers on her back like Raya. Then when Raya saw that Kaida had a sticker on her back, SHE wanted to have one on HER back like Kaida. They're so competitive lately!
Then we rushed to OT, which we did today instead of Friday like usual because Raya's OT is out this week so someone else was covering for her. Anyway, we walked in and the girls were walking down the hall in front of the OT and she got this confused look on her face and said, "Why do they have stickers on their backs?" :)
We did more messy play at OT today. Since we felt like we had made progress with the shaving cream on Friday, we played with it again today. This time the girls "washed" toy cars with shaving cream. It was a good distraction for Raya and it didn't take as long for her to warm up to the idea of having messy hands this time as it did on Friday. The clinic was having a baseball theme this week so the girls got to play t-ball:
Raya thought it was fun but had no interest in running the bases. She just wanted to whack the ball off the cone and then go chase it. :)


As soon as OT was over, we rushed back to the car so we could drive as quickly but safely as possible to a rather questionable part of Phoenix for a cerebral palsy screening appointment. Raya was having fun at first. She liked the little gown with tigers on it. I was surprised that she let me put it on her. By now, she should have a pretty negative association with hospital gowns. :) While we were in the little exam room waiting, she was happy as a clam. I thought to myself, Who is this happy, smiling child and what has she done with my Raya??
Then the nurse practitioner came in and the normal Raya came back. :) Fortunately there was no vomiting involved but there was a lot of kicking, screaming, crying, squirming, etc. The purpose of the visit was to make sure that all of her needs related to CP are being addressed. We're definitely on the right track with the therapies we're doing. We also have an appointment scheduled in November with an orthopedic specialist to see if he thinks she needs any kind of orthotics or braces. I don't think she will but I do think it will be a good visit to have. The doctor must be in high demand because that appointment was scheduled in May. :)
The other specialist that they want us to see again is the geneticist. We did have a brief consult with him (like, 5 minutes max) at the hospital last October but he walked in and looked at her and said, "Oh. I was just reading her chart and I didn't expect to walk in here and see a healthy-looking kid!" (if I had a dollar for every time we've heard that one :) He ordered a couple of labs and said that if he needed to see her after he got the results, they'd call us. They never called us so we haven't been back. With the abnormal labs she's had here & there (elevated lactic acid & organic acids), CP with no explanation as to why she has it, MONTHS of unexplained vomiting, a heart murmur, and all her other miscellaneous issues, it's realistic to wonder if maybe there's something genetic behind it. Again, I don't think there is and I will be shocked if they actually find anything, but I think it's a good idea to revisit it now that everything has calmed down considerably since our first visit with genetics.
The only other recommendation they had was that we might want to take Raya to see a developmental pediatrician. I didn't really know a whole lot about what DPs do, but after talking about it with the NP, it sounds like it would be a good thing.
Overall, I was happy with the appointment. Going into it I thought it might be a waste of time but I think it will be good to have that clinic as a resource. The timing was really good too because I feel like I'm more ready for our appointment with the neurologist next week. I have more questions for her than I would have thought to ask on my own.
It was also a validating appointment for me for several reasons. After answering all of the questions the NP asked me, I feel like we're doing a good job with Raya. I've been asked many times if I think that Raya REALLY does have CP or not. Looking at her, I do understand why people ask. She's in great shape developmentally and doesn't have the obvious visible signs of CP that a lot of kids do. That being said, it is frustrating to be asked that question. She doesn't have an obvious cause for it. She wasn't a preemie, she's never had a stroke or brain hemorrhage, she's never had head trauma, and she's never had a seizure. Regardless of any of that, she does have enough signs/symptoms to warrant being diagnosed with CP. I also have enough respect & trust for her neurologist to rely on her experience and judgement. I also don't believe that she would have concocted a diagnosis just for the heck of it if Raya didn't really have CP.

I don't know why I keep feeling the need to explain all this, but whenever people ask me (especially people who are part of her health care team) there's this little bit of doubt that tries to creep in. I really think that doubt, and especially self-doubt, is one of Satan's greatest tools against our happiness and well-being. Doubt destroys self-confidence, and I think parenthood and self-confidence have a fragile relationship anyway. I don't get offended when people ask about whether she really has CP or not, but here's my answer to that. Just because she learned to walk within the typical age range and can do things like climb on the kitchen table and almost get both feet off the floor when she tries to jump doesn't mean that she doesn't have trouble with the muscle tone in her legs. Sometimes, certain muscles in her legs get really tight and she walks like she just got off of a horse after a week long cattle drive. Other times, she walks with what looks like a limp because the muscles in one hip are so tight that her leg bows and the other leg doesn't. It's different from day to day, and some days things are perfectly normal. When she's having to concentrate on a new task or focus on what she's doing, her muscles get more tense, and then they don't always relax like they should. Sometimes she forgets that she can open her hands. She'll clench her fist like she's holding something that she doesn't want to drop, only to realize later that there's nothing there. When she sleeps, one or both of her hands are clenched into a fist.
I think it's also really important to remember that we have been working with her to address all of her physical & developmental delays since she was only 2 months old. (I guess it was probably a blessing in disguise that she was born with torticollis & plagiocephaly because otherwise, we wouldn't have started PT so early.) Maybe if we hadn't spent hours upon hours working with PT & OT for all this time, she would present with more obvious characteristics of CP. I can guarantee you that she would be nowhere near where she's at today without the therapy. I think she would have crawled later, walked later, not walked as well as she does, and who knows what else. Until she started PT, she would only roll to the right, and goodness knows how long it would have taken her to realize that she had 2 hands, not just one.
I didn't mean to be so wordy about that. I really don't ever think about or dwell on the CP issue because it's kind of a frustrating subject for me. Her CP is very mild (which we are very grateful for) and I feel funny even saying that she has it, but she does, and today we actually had an appointment related to CP, so today, I couldn't avoid thinking about the subject.
After our appointment, the girls both fell asleep in the car and we didn't have enough time to go home before going to the bus stop, so I drove through Chik-fil-a, parked at the bus stop, sat in my air conditioned car to avoid the 100+ degree temperature (FALL, WHERE ARE YOU?!?!?), and ate my unhealthy fast food in peace & quiet while the girls slept. It was lovely. :)

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