Friday, June 22, 2012

6 Months After the Diagnosis

I felt that she was getting worse everyday. Turns out I am right! The last x ray we took of As was in February and was dismissed by 2 doctors as "could be human error." Tsk! Turns out its not!. From 21 degrees she now has a 28 degree curve when at ease and 26 degree curve while doing the breathing we read in the book The Schroth Method.
The book says to do the exercises in order. I still can not get this. We averaged about 2 exercise sessions per week (just as much as we would get had we gone to a PT/ Rehab center)
A lot of self blaming going on here. I should not have bought into the "its okay your being too intense" thinking. Tsk Tsk Tsk!!!
When As was diagnosed in January, it was explained to us that for curves
less than 20 degrees - we just have to wait and see. x ray every quarter
21 to 30 degrees we will start therapy, maybe bracing
31 to 40 - degrees definitely Bracing
41 and up- that's when we will/ should consider Surgery

Since we are not willing to do surgery, we could not take it easy. We went to Physical Therapy- we were told to go for 6 sessions, went for adjustment with a chiropractor (this was the most satisfying experience), had another x ray. I went as far as enrolling myself in a Yoga Course in the hope that I will find help for my child there! Here I am again being indecisive and buying into "Yoga is good for scoliosis!"
I am still so reluctant to start Physical Therapy for my daughter again. I now think the first therapy was useless and we were only prescribe to have it for 6 sessions once or twice a week for an hour every session. I can go on a litany on why I think the Physical Therapy As had was useless  but as it turns out our sporadic schroth exercises did nothing to hold the curve in place which was my original plan.

I talked to the doctor (Radiologist) reading the x ray  results and we came up with a plan on how to take As's x rays in the future.

Her next x ray will be end of September. Here's the plan now:
1. Goal: must exercise 6 days with As for 90 minutes 6 days a week and 30 minutes on rest day.
2. Research, Read and/ or blog. Get information.
3. I must cope beautifully.  Don't whine about the situation. Take it one day at a time.
4. Keep a diary for me and As to share and write down what we are up to- exercises, how we feel etc.
5. We will reduce the curve! (Gush I feel overwhelmed!!)

I wish we have this here:

But we don't so I will focus on the good stuff that is available now:
1. As is not in pain
2. Her curve is still less than 30 degrees.
3. We both have the space and time to do this.
4. We have doctor(s). Though they are not focused on scoliosis we can go to them and refer what we are doing.

I must accept and assert that its up to me although I can not do everything! Also maybe I should accept that the people I will ask help from will be reluctant to go along, might find me odd and this will take a lot of my time!
Like what happened in the x ray yesterday. I wanted to see if what was said in the book is true. So I had to explain it to the rad tech. Showed him the book and all. I also paid for the extra x ray "shot". I think the rad tech guy got curious too. But he said that we do not have a doctor's order. So I had to explain to him again that the doctor can not put the extra x ray request since the last 3 doctors we saw has not heard of The Schroth Method. But since we are already getting a x ray we might as well take a look at the method. After the films were developed, I got all excited and started asking the rad tech if I am right that the spine did look straighter in the first x ray (with As doing rotational breathing as we understood it) than the second (while at ease). And though he was smiling and sort of nodding, he would not confirm nor give his opinion despite the fact that I was asking for it- they have protocol according to him! Our pediatrician entered the room and said something like "yeah it looks like there's a difference but we should wait for the doc who will read the result" fair enough! But the doc who will read the result wasn't there yet! So I decided to wait for the him and tell him what we need and that we will be doing this again and I want it done exactly the same way every time! The radiologist who came highly recommended by our pediatrician was very agreeable and was reassuring, but failed to write down the hip risser score of As. Which I also forgot to mention to him. He seemed annoyed, that I was sort of instructing him on what I want!  I know he has like 10 thousand things to do and he's not focus on scoliosis only (here's acceptance and patience)! I wish I could post the x ray pictures but the doctor who is reading the x ray and I agreed that we were going to go for film rather than cd. As was very cooperative despite her being hungry.
I will focus on the positive!!!

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