A roller coaster of emotions. It is almost impossible to handle. But the ups are what get us through the downs.
Ella's micro wheelchair has been a great addition. We're pretty sure we're going to get one for her (the one she has is a demo and she only gets to try it for two weeks). She's getting a little better at maneuvering it. She still can't turn or back up (when she runs into things), but I'm sure it will come in time. She's not quite strong enough to propel herself on the thick, plush carpet, but it's easy enough for us to change the flooring in those areas for her.
This wheelchair has been a major "up" for us :)
We took Ella to see her neurologist, Dr. Silver, earlier in September. We scheduled her to go to his MDA Clinic at Shriner's Children's Hospital in February (that was their first opening).
Since her appointment with Dr. Silver, we've noticed some definite regression with Ella's strength.
She's starting to fall over more when sitting.
She's slouching more, especially when sitting in her high chair or a shopping cart. Her PT got her an abdominal binder which has helped a lot with her trunk stability.
When we lift her from lying on her back, she's having a harder time holding her head up (it falls back and we have to lift it for her).
She's having a harder time standing and bearing weight with our assistance (even with all of her orthotics on).
Since no two SMA kids are alike, we have no idea what to expect regarding the progression of the disease. We've been assuming that her recent struggles have been due to her growing size and that her muscles are just having a harder time supporting her weight.
But I decided to email Dr. Silver (thanks to some loving advice from my sister, Sarah), just letting him know of our concerns and wondering if these regressions in such a short period of time are "typical" for kids with SMA, type 2.
After sending the email, I received an auto-response saying that he is out of town until October 3rd.
No big deal, it's nothing urgent. She's going to the MDA Clinic in February to see him again (as well as the rest of her new "team"), I was really just looking to be reassured that we don't need to be concerned.
Today a nurse called from the MDA Clinic. She said that Dr. Silver called her after receiving my email and wants Ella to come to their next clinic, rather than wait until February. She told me that it could be a long day with a lot of waiting, since they are double booked, but Dr. Silver wants her to come anyway.
We're now going to the Clinic on October 10th.
I wish I could have heard Dr. Silver's voice to hear how concerned he was about our Squishy. Is her regression really "bad"? Or he just being extra cautious?
I can't help but feel that he's concerned, otherwise he wouldn't be having her come to their very next clinic (which is completely booked 6 months out).
I think even more than the fact that Dr. Silver wants to see her, I'm terrified because we're watching our daughter get worse before our very eyes.
It's a lot to handle. It's indescribable.
So I thank God every day for the "ups" that we've had. I don't know how I'd survive without them.
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| Ella resting on her "Big Bear" after falling over, being unable to get herself up. |
