We had an early and long morning yesterday, with a number of different appointments. After a few years of experience, we have started booking our yearly orthopedics check up as early as I think I can manage to get Trey to the hospital (these visits beautifully happen during Ry’s time off in January, so I can leave Ave and Sadie at home). When our appointments have been at 10am or later, we never seem to be out of the hospital before 2-3pm. However, even an 8:30am appointment didn’t get us out of there before 11am.
All we need are x-rays and a visit with the orthopedics doctor, however what happens is: we get to the hospital and check in, when we are told to go sit in the waiting room, which is quite empty, phew. Knowing this is the waiting room to see the doctor, I ask the receptionist if we need x-rays, as the reason we come is to check Trey’s back and neck x-rays for progression. The receptionist says she’ll look into it. Ten minutes later, I go and ask again: does Trey need x-rays? I’m told the LRN (nurse) is trying to find a doctor to check with and if so, get a requisition from. Another 15 minutes later, we’re told to go over to X-ray (why was the req. not already in Trey’s chart???????).
We get over to x-ray where there is standing room only. We get to watch almost an entire “Garfield” movie before it’s Trey’s turn for x-rays. However, Trey does great… stands still, listens, does what the technician says. Then back to the other waiting room. Fortunately that wait wasn’t as long as the X-ray wait. We get our room, wait some more and then the 3rd year medical student and first year resident come in. I actually graduated from high school with the resident, which makes me think. It’s just so interesting the paths our lives take, which we never would have guessed. It was fun catching up with him, a super nice guy.
Anyways, the students and residents rarely have a clue what MPS is, so I spend about 5-10 minutes talking to them about MPS and how it effects the bones, before the head of orthopedics comes in. Because Trey’s neck x-rays last year were so good, Dr. Reilly didn’t bother taking any this year. He said we’ll do them again next year. Trey’s kyphosis (it’s like a little bump around the middle of your back, where the bones curve outward and aren’t supposed to) is possibly slightly progressed. However, he said it’s hard to tell because the x-ray this year wasn’t great. Either way, there’s nothing he’d do about it and based on all the kids he sees, he considers the kyphosis mild. Great. In terms of what the orthopedics doctor looks at in kids with MPS, he looks at the neck, because the top vertibrae can be improperly formed causing instability and also, GAG’s can build up in the vertibrae around the spinal cord, reducing the amount of space for the spinal cord to function, and possibly squeezing the cord, which is all not safe. The doctor looks at the kyphosis and also at the legs for knock knees or bow leggedness. however, Trey has none of that. As far as I’m concerned, it was a great appointment and I was feeling good.
We next raced to Trey’s osteopath, which we were late for. I love her. She’s wonderful. And just by feeling Trey’s body gently, she knows what’s going on inside. She’s predicted ear infections before I’ve noticed them and more. This past December, I had a bit of a scare. We went to see her at the beginning of December after not seeing her in about 4 monthes (because he’s doing so well, so she just wants to do check ups and give his body a boost about every 3-4 monthes) and she said she could feel a build up in Trey’s central nervous system. She said there was a build up of energy (or ‘Chi’ in her words) that she’d never felt in Trey before. Given all my fears about Trey’s CNS, I was worried. She asked about Trey’s history since the last visit. Se wasn’t able to comment definitively on the cause of what was happening without seeing the results of her treatment, so we made another appointment for the following week. However, she did say she thinks it might have been the Tamiflu Trey took while he had the H1N1. And then we went back yesterday. Out of a 5, with a 5 being that the ‘Chi’ is completely blocked, Carolyne commented that Trey was at a 3. The following week, Trey was at a one. Carolyne said his system was much better and that this would not be a long standing issue, and would be resolved with that visit. We went back yesterday to confirm and all is good. No blockages any more. Thank god. It freaked me out. However, it also freaks me out that something like the Tamiflu could do something like that to Trey’s body. Now we get to go back in 3 monthes. Carolyne really is amazing. It’s like she knows things. It’s very cool because she helps Trye’s body in ways that allopathic doctors can’t. For example, after our orthopedics visit, she said she’d work on Trey’s kyphotic area more… she said that’s a junction in people’s bodies and a common area for issues to arise. We go to Carolyne for our whole family now with any health issues that arise.
After Carolyne’s, we went to Caper’s to pick up bentonite clay, green clay, sea salt, baking soda, and a treat for being awesome! Aside from the treat, all the other items we use to help get the X-ray radiation out of Trey’s body. I have a book called ‘Healing with Whole Foods’ in which there are remedies listed to help counteract the effects of radiation in the body. It is even specific enough to list how many remedies for how many days you should do for one X-ray. For the next 6 days, we’re giving Trey a tbsp. of bentonite clay once a day first thing in the morning, a sea salt, baking soda, clay bath at night and as much buckwheat, apples, and sunflower seeds as we can manage.
Then we stopped to pick up Trey’s repaired FM system. For those of you with kids who have hearing loss, I have found the FM to be insanely helpful. With no exaggeration, when Trey wears the FM, it is so effective and he hears so well and is so much more chatty, that the FM makes it seem like Trey’s hearing aids don’t even work. Trey’s preschool used the FM last year, but he hadn’t used it since then. When we went to San Diego for a family vacation in early November, we used the FM on the trip there and back. The difference was so noticeable, we use it daily now. When Trey is not wearing the FM, he is quiet. When Trey is wearing the FM, he asks questions, he chats… not just talks, but chats. And his language in the past 2 monthes has taken off again, so the FM has become a staple in our family and when it broke I asked for a loaner!! So now we’ve got our FM back.
And that’s that for yesterday. Today we have ERT and while we’re there, Trey’s PT and OT will come for a visit.
