"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘scooter’

A Very Good Day

So, over the past few years, good days have been few and far between. Yesterday was not only a good day, it was a great one in many ways.

Em is now the proud owner of a cute little scooter and we are all looking forward to her increased independence. Still not sure why it took so long to appear or what was up with insurance but, this is the outcome we were praying for and we will just be thankful for it. Another thing to be thankful for: we popped into Myers to kill some time between appointments and she opted to walk instead of taking the brand new scooter. So, she spent 20 minutes or so walking around the store which is another rare occurrence. We will try to get some pictures in the next day or so and post them.

Yesterday, I dropped in to the doctor’s office to get the results of the bloodwork that was done on Monday checking Em’s vitamin d level. To my everlasting surprise, it has increased significantly over the last 2 months of being on 2,000 IU a day. Her level started out at 6.1 and is now 25.9. That is still deficient and a long way from where she should be – 60 would be good – but clearly there is progress that has been made. Better yet, it does seem to correlate with a general sense of feeling better. A bit more energy and the fatigue is a bit better and her bones are feeling better. If we can get her to somewhere around 60,  I envision her feeling exponentially better.

[As good as it is to hear of this improvement, I am pretty ticked off at the doctor’s office, although that is not news. I received no call about the results and had to fetch them myself. It is probably totally unreasonable to expect a call for a ‘normal’ result but one would think that an abnormal result would trigger a call. But nope. Not only did it not trigger a call, there is no plan whatsoever to alter the course of treatment or even discuss it. No ‘come in for a visit and let’s talk’, no ‘let’s up the dose, here’s a new script’. Nothing. Just ‘sign the release and have a nice day’. So, yeah, I am really happy about the improvement but not at all happy about the treatment. Will be checking into who we can switch to – now staying with this practice is my absolute last choice.]

The other very good news was for me, not Em. I have been more than a year without kidney stones at this point – had an x-ray to check for my follow up and it was clear! Don’t have to see the doctor again for a year. That is very, very good news and all because of drinking a little lemonade everyday.

This afternoon, we head back down to see Dr. Abonia for a follow up. Not sure what we will accomplish, but at least we like him and I feel like he is taking the issues seriously.

So, all in all, we are pretty happy and feeling very encouraged. It is a nice feeling!

Good…???

So, I got word from the doctor’s office that Emily’s bone scan was normal. That good news was followed up with a cautionary statement that the doctor had not yet seen it when the nurse called; he had previously expressed concern that having it done at Reid would mean it would not be read properly and he would have to take steps to make sure it was. So, I am not willing to just accept ‘normal’ in this situation. We see him Friday and hopefully will be able to hash it out then. Also, in my skepticism, we will be getting a copy of the report so I can see it with my own eyes and have it for my records. Not that I don’t want ‘normal’ in this case. Normal would be a wonderful thing. Really. I just naturally doubt when any test my daughter has done is labeled ‘normal’. Also, I am aware that there can be a great deal of variation in results with the type of test Em had done, so the results could be less than clear.

Also, in equally unbelievable news -I just got a phone call from the wheelchair folks saying that Em’s scooter is in and we should be getting it tomorrow. Forgive me for my continuing skepticism, but I will believe it when it is in my vehicle and we are driving away. I should be more trusting but I just am not. Honestly, I had given up on it because I hadn’t heard anything about it and had even received a puzzling rejection letter informing Jody, Dr. Neilson’s genetic counselor at Cincinnati Children’s, that her request for a manual wheelchair for Em was rejected. That was beyond odd since no one at Cincinnati Children’s had requested anything for Em and they were not even involved beyond writing a letter stating that a wheelchair is often necessary for EDS patients. Furthermore, we already have a manual chair and, through Reid Physical Therapy, we were requesting a scooter. I have no idea what the point of that rejection letter was, but, apparently, it had nothing to do with anything.  So, good. I think.

Anyway, in 24ish hours, Em may be the proud owner of her own set of wheels. Pictures will follow if this is not all a great cosmic joke.

 

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