Loss of skill or loss of strength?

In the past month, Hannah has seemed to lose some of her physical skills that she has worked so hard to learn.  She no longer even tries to go from a kneeling to a standing position using something to lean against.  She no longer feels comfortable sitting in a chair.  She does not seem to be able to crawl as far as she used to.  She can not sit to stand anymore.  She would rather spend the time on her stomach moving around or in her dreaded W-sit.

At first, we attributed this loss of skill to her being sick with the virus for the past few weeks.  It was never bad enough that we had to seek hospitalization for it (except for one night in the ER when it was at its worst, which was just a heckuva lot of congestion that needed to be bulbed out).  But it definitely took its toll on her, as her naps each day went from 90 minutes or so to almost 3-1/2 hours.  Her sleep at night was horrible, as she would not eat much during the day so she would wake up around 3 am because she was hungry.

During this past sickness, she lost almost 1-1/2 pounds, which for a 24-1/2 pound little girl is a lot of weight.

She has started feeling better in the past few days, and her appetite is definitely coming back.  Unfortunately, her physical skills are not.  Daddy and I were starting to get worried.

We went to Physical Therapy today, first time in 3 weeks because of Hannah’s sickness, and I was really looking forward to it.  I needed to know what was going on with Hannah, why she was losing these skills (neurologic/Gaucher’s or strength/virus), and basically, what do we do now?

Both our PT and her assistant both separately mentioned that Hannah looked much thinner, especially noticeable in her arms.  Made me a bit nervous because I did not realize it was obvious.

Her PT strongly believes that Hannah has lost a lot of strength in her already hypotonic (weak) muscles.   She told me that for every week that she does not exercise or work those muscles, she loses 15% of what she has learned.   Being out of commission for the most part for 3 weeks, that is a LOT of things that she has lost.

She does not believe that it is neurologic in nature, which is a huge relief.  The first sign of serious progression of Hannah’s gaucher’s disease is the loss of skills.  As a matter of fact, that is always the first question the doctors at the NIH and Dr. Schiffmann always ask us.

Basically, we have to go back to where we were about 6 months ago and start over.  Start all over.  Basically much of the work we have done over the past 6 months has disappeared…somewhat.    Her PT sent me an email tonight with the following homework.

1) Encouraging Hannah to move sit <=> stand by positioning a stationary object close enough so that she can lean forward and use the object to stabilize her trunk and by re-positioning her feet so that her toes point forward before moving into stance;

2) Encouraging Hannah to sit on an elevated surface with the hips leveled with or slightly higher than the knees (for improvement of Hannah’s upper body control and sitting balance);

3) Facilitating a more erect trunk posture by positioning toys at a level that Hannah has to reach forward or slightly upward when in the tall kneeling, stance, and tailor sitting  (Indian style) positions or when sitting on an elevated surface; and

4) Encouraging Hannah to sit in the tailor sitting position (Indian style sitting) as much as possible to stretch her inner thigh muscles (opposite of the W-sitting position).

I’m going to miss our PT and our hydrotherapist when we move.  They truly have done so much in helping Hannah advance her skills.  It will definitely be a loss for us!  I just hope that we can find someone who is talented enough to keep working with Hannah and her physical gross motor skills.