"Suffering the Slings and Arrows of Outrageous Fortune"


So, a lot has happened since my last post…

First, May 10th was the anniversary of the day that made us realize something was really wrong with Em. We had seen the signs all along, but didn’t know they were indicative of something serious. And she had had that bad patella dislocation in the fall… But there was no one to help us put the pieces together and I had been told it couldn’t possibly be any of those ‘bad things’ (i.e. EDS) that cause dislocations. Then we went on the field trip to the zoo in May and she was bedridden for days after – we knew then that something was really wrong. Within a few days of research, I knew it was EDS and the rest is history.

That we got a diagnosis in under a year is pretty darn good – and now we have expert care and that has brought us priceless hope.

Second, we saw the PT and OT at Cincinnati Children’s yesterday. They were awesome. (I think. Unfortunately, I was in the throes of a kidney stone attack and wasn’t exactly functioning well. I had to excuse myself to go throw up, so it wasn’t much fun for me! But I couldn’t not go…)

We saw the OT first and she was immediately concerned with the wheelchair. Not that Em was using one, which is the opinion of many medical professionals we have seen. No, she was concerned that it was not adequate and suggested that we might need to think about a custom chair to really to the job. God bless her! That issue was tabled for the moment but I am sure we will revisit it in the near future.  They sent a pillow home with us to use behind her back in the chair. It seemed to put her in a better posture so it will do for the time being. Rachel gave Em several simple exercises to do – for her neck and core. They can be done sitting up or lying down – which is exactly what we need! She was very understanding and nice. She also gave Em some oval 8s for two fingers on each hand. I was very pleased with her and the results. She sent home some foam to use on pens and pencils, to see if that will help her write. She also suggested some computer aides: an IPad or similar tablet type devices – particularly when she is older.

Paula was the PT. Also very nice and very knowledgeable. She immediately noted Em needed insoles to correct her flat feet. She felt that standard insoles would do the trick – at least for now. She heated them and fitted them to Em’s feet. As soon as Em stood up, she felt the difference and said it made her knees and hips feel better. She also gave her a few little exercises – quad squeezes, hamstring stretches. By that time, I was pretty out of it so I will need to look at the papers to see what all was suggested. She liked the Ryka shoes I had bought Em and the inserts go well with them. They conversed a lot with Andrew, since I was out of it and he is fellow therapist. So it worked out well.

Basically, they are starting slow so as to not overwhelm Em. They created a very flexible plan that takes into account the fact that Em struggles to stand at times. And they were very encouraging and positive, while being realistic and practical. All in all, it was a very productive visit.

Em objected to the idea of a custom wheel chair – she wants out of the wheel chair by summer. Rachel was supportive but tried to convey that may be too big of a goal. We discussed crutches but the reality is that she might never be able to use crutches because of the shoulder instability. A better wheel chair will be necessary for joint preservation, most likely.

There was a suggestion of an intensive therapy program at Cincy sometime this summer or fall. It is doubtful that our insurance will pay for it but we were told to get our name on the list and they would investigate insurance for us.

A lot of good was started yesterday and I think it has given Em a better outlook on life. She is eager to get better and is motivated to do the exercises. We will eventually go back for a follow up with them but will probably see Dr Tinkle again first. We have a number to call and talk to them directly if we need to or have problems.

A diagnosis can be a wonderful thing and we are on our way to getting better!


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