Saturday, January 14, 2012

Going Backwards....

Have I mentioned lately how happy I am that Kennedy is "mobile?"  However, she's still going backwards.  And I think at this point, it's safe to say that we're both over it.  I think she wants to crawl forward as much as I want her to.  She's constantly stuck under or between something, and I'm constantly having to remove her from these places.  Today was the wall unit in the playroom. 


I've tried everything to get her forward.  I've tried bribing her with phones, computers, and even food.  Today, I decided that I'd try leaving her where she was.  Maybe being stuck under the wall unit would encourage her to crawl forward.  Well, she sure tried.  But sadly, she was only able to wiggle herself out a little and sideways.  At least she got one leg free.  It's a start, right?


One of these days she's really going to shock me!  I suppose now is a good time to mention, we have no more PT.  If you remember several weeks back, I posted about how Kennedy's PT insulted me over her backward crawling.  I decided to request a new one, since he was also very inconsistent.  Well, long story short, they have denied her services all together now.  I have been fighting for weeks, and last week I attended a meeting where I insisted that they do a re-evaluation, since her first eval was at 6 weeks.  Well, the good news is that she scored REALLY well.  She was in the lower end of average for all skills, and fell just slightly below in motor skills.  We knew that's her biggest delay, but apparently not a big enough of a delay to warrant additional services.  In fact, they told me if she didn't have Down syndrome we wouldn't qualify for anything.  As much as I'm thrilled that she's doing so well, I can't help but feel like we're losing out on something really important.  After much arguing, they finally agreed to have a PT consult with our Early Interventionist.  She doesn't think that's going to do any good, but my plan is to be back on the phone with them in a few weeks if there's no improvement.  I'm also looking into private therapy.  Unfortunately, it's not a very cost or time effective solution.  The closest pediatric PT is about 45 minutes away.  

I just ordered the book Gross Motor Skills for Children with Down syndrome, and I plan on really stepping up what we're doing at home.  I've been working with her, but I'm no professional, and I don't know what exercises to do unless someone shows me.  So now I'm going to count on the book to show me.  This doesn't mean my fight is over, but I'm quickly finding out that I'm not easily getting my way and I'm losing precious time.  

Here's some other pictures...that don't involve being stuck under furniture.
Kennedy had lots of fun with her big cousin Carla who was visiting from New Jersey this week.

Kennedy has also taken her eating to a new level.  She's refusing lots of the basics and becoming a real picky eater.  She's very specific about her tastes.  Her favorite is still hummus and pita bread.  But tonight's refusal to eat macaroni and cheese, led to me giving her tacos and avocado.  Which, as you can see, she loved. 



8 comments:

  1. She really is doing VERY well for her age! She has consistently hit milestones before Reagan and she is younger :) so I'm not surprised about not getting PT. That book is AWESOME! I know you will get a lot out of it because you are a reader and researcher. It is very easy to use.

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  2. Are there any OT's closer? Could be a good choice as we address gross motor as well as fine motor and oral motor which are all areas that can be challenging for downs syndrome kiddos. Just another option to see if you can avoid driving that far! Sounds like she is doing great though! Might need someone to help facilitate forward motion until she understands how to motor plan that movement.

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  3. Are there any OT's closer? Could be a good choice as we address gross motor as well as fine motor and oral motor which are all areas that can be challenging for downs syndrome kiddos. Just another option to see if you can avoid driving that far! Sounds like she is doing great though! Might need someone to help facilitate forward motion until she understands how to motor plan that movement.

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  4. The look on her face when she freed the one leg is priceless! :)

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  5. Love the look on her face in the 2nd pic! I'm sorry your battle has been so difficult. She really has been doing great. Our EI recommended that book and it is great. Definitely look into OT...we only see Hailey's every other month but she does give us great tips and tricks!

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  6. Side note, Aviva has those same cupcake pj's and loves wearing them. Now onto other things; I'm not liking FL so much anymore. Her having down syndrome should qualify her for everything!!!! This is how you ensure she continues to make progress. I think it is hilarious how she gets herself stuck, mainly because when she is stuck the look on her face says "Mom get me unstuck so I can do it again"

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    1. Yeah, I'm in FL. And unfortunately Ds qualifies us for EI, but not for actual therapies! It's so crazy.

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