Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, December 11, 2012

Twists and Turns

While Meagan is fighting off the flu and strep, I figured I"d update on a 'new' development we've had with Meagan.  We were supposed to have her Neurology follow up today, where I was hoping to post about some possible answers to her new 'habit' but of course, with her being so sick, I cancelled it, thinking we wouldn't get much out of it with her not feeling well.

When Meagan came home from the NICU, she had very clenched hands.  This is not uncommon for babies in general, but especially those who have Neurological issues like Meagan.  We worked hard with her therapists to get her hands unclenched, and then to separate them. (She used to hold folded together all the time as a soothing mechanism before she could suck on a pacifier).  Ever since last March, we had a good handle on this.  She started to open up her hands a lot.  She started to use them separately  and began to grab toys and other people's fingers.  This progressed rapidly, and before we knew it, grabbing things was one of her best skills.

From March until this November, Meagan would grab just about anything.  Toys, plates of food, people's hands, hair, or earrings.  The list goes on.  Just in the last 3 weeks, I started to notice something when Meagan would sleep.  Her hands would do something like this:

It started in one hand....

...and is now in the other too.

I didn't think much of it, as things come and go with Miss Meagan all the time.  But then I started to notice even when we were playing, her hands would sometimes curl.  When grabbing for toys, where she would 100% of the time get the toy, she started to only intermittently grab it, and the other times, her hand would curl or clench and she would only hit the toy.  Then one night she was sucking on her pacifier.  It fell out of her mouth.  Normally, she would reach up, grab it, and either bite on it, or try to put it back in.  Instead, her hand curled inward.  The same thing happened when having her bottle.  If the bottle moved, or seemed like it would drop, her arms and hands would curl rather than open and reach up to grab it like she normally would.

Meagan won't hold her bottle anymore

If I move her bottle like it will drop, instead of reaching for it, her arm moves up slightly but no grabbing for the bottle.

Noticing it happening more frequently, I decided to watch it closely.  I didn't say anything to her therapists or her doctors yet, though, because I never know with Meagan if I'm truly seeing something "new" or if I'm just over-analyzing something that is a new quirk .... her "new normal."

Our OT came about a week ago to work with Meagan.  She said to me "What's up with Meagan's hands?"  I was kind of relieved she said something because it made me realize what I was seeing was in fact something "off."  I told her I had no clue, but I'd noticed it first when sleeping/relaxing....and then it had moved to eating, and even times of play or snuggling. It also started out in one hand and is now in both. She suggested perhaps she is getting some new spasticity in her muscles, but also was concerned we have a new Neurological issue going on.  She was glad to hear we were following up with our Neurologist this week and told us to ask him about it.

So, of course, we had to cancel the appointment because of Meagan being so sick.  But I'm hoping we can reschedule soon.  I'm a little concerned because it is such a new thing for Meagan..almost going "backwards" with the use of her hands, which has been one of her strongest skills.  At the same time, she is working so hard on rolling and really starting to get a lot of head control, so I'm wondering if she is just getting some spasticity through her hands now because of so much going on elsewhere in her body. I'm not worried about any general regression because she still smiles, babbles, and will play with toys sometimes.  It just seems like perhaps she is having a muscle spasm or messaging issue when trying to use her hands "on demand."  I do want to stay on top of it since it is new, and to make sure there is no Neuro cause for the change in her hands.

In the meantime, her OT has been great and ordered her a splint for her hands so we can work on keeping her thumb separated and retain her grabbing skills.  Hopefully the Neurologist will have a little more insight on this once we get to see him again. I will of course update when that happens!

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