The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Sunday, September 27, 2009

Mommy report: Update, part 2-gross motor

Again, to review, Braska is 34 months old, she rolled over at 8 months, she sat independently at 13 months, and she crawled consistently at about 25 months. Over the last year she’s slowly conquered pulling to a stand, cruising, and taking steps with two hands help.

Braska has PT every week.  She loves her Miss “An-juh-wa” very much, and she performs better for her than almost any of her other therapists.  She has really taken off over the past few months since we’ve been having some sessions in the motor therapy room at Braska’s school.  She LOVES that room and is totally energized when she’s in there. They swing (a favorite always) and climb and do little obstacle courses while crawling.  She especially loves the space maze, which she has finally been able to master—all three levels—all by herself.  I often say that if we ever were to win millions, one of the first things I’d do would be to build one of those rooms on our house and fill it with all that cool therapy stuff.

She slowly worked her way through pulling to a stand with help, doing it on a flat surface (like a wall, nothing to grip) and cruising down the couch and then a flat surface, like down the hallway.  In the last month or so, she has started to try to stand up on her own, and she can sometimes do it for a second or two, but usually only once, then her little legs don’t cooperate after that.  She likes to be upright, though, and she spends alot of her days standing at the toy chest, the couch, Kinlee’s ExerSaucer, or at the front door looking out.

A couple weeks ago, her PT told me that Braska’s teacher at her pre-preschool said she had taken a step at school.  I was surprised.  We tried to set her up for repeating it at home, but she just lunges once she’s standing, not moving her feet. 

Then last Friday she took a step going from a chair to the couch, and again I was surprise.  Sunday we went to M’s family’s house for football watching, and Braska blew us all away by standing up from her little wooden chair in the middle of the room and taking 2 steps to the coffee table.  This was the first time she had done that unprompted.  Everyone got all excited and then she did it a few more times between people on the floor with her.  We debated if we get to count that as her “first steps,” knowing that it will be a long time still til she is officially walking, but I think we’re going to give it to her.

Her biggest issues are that she is just plain one of the lowest tone kids that some of our therapists have seen.  We have had this comment shared with us on several occasions.  She just has to work SO hard to move herself at all.  It doesn’t help, I’m sure, that she’s so darn small and light. She doesn’t have much muscle mass at all.  She struggles a great deal with her core strength especially, and even with her SureSteps, she has a hard time keeping aligned right and balancing on her own.

One thing she has down pat is crawling…finally.  She is a speed crawler at this point!  Don’t turn your back because she will be gone!!  She has also mastered climbing the stairs by herself, and pretty quickly, and she is just now getting the hang of going down the stairs the proper way.  We don’t let her do it unsupervised yet, but she’s making great progress there.  She loves to climb up on the couch or into the recliner.  Any climbing she can do is fun for her.

Overall, she’s working hard and gaining strength, but it is just a VERY slow process with her.  I’m guessing at this point that Kinlee will walk before Braska does, which will be weird, but it’s fine.  In the end, it doesn’t really matter.  And I can catch them easier if they’re crawling anyway!!

Stay tuned. Update, part 3—speech will be next.

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