Earlier in the fall we learned that Ella's continued regression was not usually "typical" for a child with Type 2 SMA, which led to the new classification of "severe Type 2." However, we were told that at some point (hopefully in the near future) her regression would plateau for the time being.
About a month or so ago, we started thinking that the regression had indeed slowed, if not stopped. We were very excited that we could finally start focusing on the skills she had, not worrying about what would be gone tomorrow. Or the day after that.
But then a couple weeks ago, Ella all of a sudden lost the ability to lift her arms at her shoulders. She used to be able to lift them to almost 90 degrees. She can, however, still bend them up at her elbows.
I told her PT about our concern last Tuesday, and she immediately saw what we were talking about. Ella couldn't reach for anything. She also noticed that Ella's neck muscles seemed weaker because her head was occasionally falling and she couldn't get it back up.
Lynda (her PT) had me video tape this new regression and email it to Dr. Silver (neurologist) that morning. A couple hours later, his nurse called me and asked if we could bring Ella in to see him that afternoon. We did.
Dr. Silver was concerned that something else could be going on that would cause this sudden additional regression. Maybe she was not feeling well. We thought maybe even her broken arm could have been part of the problem, but that was ruled out because she was able to lift her arms even when she had the heavy cast on.
There was nothing else wrong with Ella. Dr. Silver put it quite plainly... it's just the SMA. She's just continuing to regress. His actual words were, "Her anterior horn cells are deteriorating more rapidly than we would like to see."
Well fabulous. Just what you always like to hear about your baby girl.
So now we continue to go on. Hoping and praying that her regression will plateau soon. It is so very difficult to see her struggle so much on a daily basis, but what makes it even harder is to see her get worse in such a short period of time.
Please continue to pray for our Squishy.
About a month or so ago, we started thinking that the regression had indeed slowed, if not stopped. We were very excited that we could finally start focusing on the skills she had, not worrying about what would be gone tomorrow. Or the day after that.
But then a couple weeks ago, Ella all of a sudden lost the ability to lift her arms at her shoulders. She used to be able to lift them to almost 90 degrees. She can, however, still bend them up at her elbows.
I told her PT about our concern last Tuesday, and she immediately saw what we were talking about. Ella couldn't reach for anything. She also noticed that Ella's neck muscles seemed weaker because her head was occasionally falling and she couldn't get it back up.
Lynda (her PT) had me video tape this new regression and email it to Dr. Silver (neurologist) that morning. A couple hours later, his nurse called me and asked if we could bring Ella in to see him that afternoon. We did.
Dr. Silver was concerned that something else could be going on that would cause this sudden additional regression. Maybe she was not feeling well. We thought maybe even her broken arm could have been part of the problem, but that was ruled out because she was able to lift her arms even when she had the heavy cast on.
There was nothing else wrong with Ella. Dr. Silver put it quite plainly... it's just the SMA. She's just continuing to regress. His actual words were, "Her anterior horn cells are deteriorating more rapidly than we would like to see."
Well fabulous. Just what you always like to hear about your baby girl.
So now we continue to go on. Hoping and praying that her regression will plateau soon. It is so very difficult to see her struggle so much on a daily basis, but what makes it even harder is to see her get worse in such a short period of time.
Please continue to pray for our Squishy.
