Thursday, February 17, 2011

Crazy Communication Milestone Day!

This past year and a half has been difficult in more ways than one.  Only recently did I realize that I really had hardly ever written down any milestone that Olivia has reached; so when I look back I am only sure of the specific date for a few things.  I'm really going to remedy that going forward.

Today was just a strange day in a really good way.  Livi has been on the cusp of doing a lot of things - ever since she started crawling the Monday before Christmas, it seems that her motor skills have just exploded.  It was as if her body and her brain finally realized she could move and do so much more than just sit there.  It took her almost a week to try and venture out of the area we did her therapy in all the time.  At first it was confusing to me, until I realized it was a sort of learned helplessness... she had always been in that area for stimulation and didn't realize she could go farther.  To combat that, we kept putting her in other areas of the house with things that crinkled (her favorites) a little out of her reach in the hallway outside the room.  Now it's thrilling to see her try and follow us from room to room.  She still doesn't do it as much as I would like, but it's neat to know she wants to be with us. 

Earlier this week, Amelia was playing dragon and roaring alot.  Sunday, right after Mia roared, so did Livie - who was right next to her.  It was so funny!  She did it several times after Mia, and then today as I was telling the OT the story and imitating what Livie did, she roared again. 

About two-three weeks ago at a play date, two of the moms said they heard Olivia say "baby" in context, but I didn't hear it then or since.  Between speech therapy and normal life today, she said baby, bye bye bear, bye bye bunny, grandma, and made the sign for eat in context and several times.  She doesn't really say mama a lot, but she has been able to say that one for a while.  She also has tried to say "eat" but with no sound coming out.  It looks sort of like a monkey grin - those real cheesy wide grins that squish the eyes shut.  She does it after I say, "eat, eat" to her and I was emphasizing the facial expression - drawing out the "e".  Try it and you will know what I am talking about.  It's kind of funny that she mimics the movement but can't quite get sound to come out.  All of these words are approximations, but they are in context and I will take it!

Our speech therapist is really an amazing woman.  We have been so blessed with our therapists.  She has so much knowledge and explains so much to us.  Janet told us that universally, once children get about 25 words in their vocabulary, they begin stringing them together in 2 word sentences.  It's neat to see Olivia starting this process.  It makes me wonder if she has the other words in her vocabulary but simply can't vocalize them enough for us to understand what they are.  I'm also reminded that with PWS, the receptive speech is much, much stronger than the expressive speech. 

 She has been wanting to walk so badly... she hates to sit down and actively fights against it when we are holding her up and need her to sit in a chair, on the floor or on our laps.  She tries to climb up our shoulders and bodies and stands on tippy toes at the windows trying to reach the blinds to play with them.  She bounces constantly and has been pulling herself to stand everywhere trying to reach things.  She's actually quite tall for a PWS child - 31 plus inches, 22 plus pounds and 17 months old.  She's WAY more inquisitive than I remember Amelia being at this stage.  Either that, or I have way more stuff on the counters now that she could pull off and I just notice it more. 

Olivia also walked today with a toy walker!  Our occupational therapist brought a Vtech Learning Walker she picked up from the local CAPA store, and Olivia took about 4 wobbly steps on it.  She would go about 3-4 steps with it slowly, then it got away from her and she would sink to her knees, pull herself up and then try again.  She was going from the therapist to myself and back again.  She was exhausted after therapy was over and slept an hour longer than normal for her nap. 

This time a year ago, I definitely did NOT see this happening in my future... after so many months of Olivia really not moving or talking much, it was hard to hold on to the promise that these kids do eventually gain a rough form of motor control, and some of the PWS kids do even better than that.  I'm so grateful we were able to start growth hormones at 4 months, and I wish we could have started them even earlier.  We just didn't have an endo that was current on PWS at the time, but now we have a great one.


Lisa said...

My son Nicholas (also with PWS) really took to a walker, like Olivia, it took him a while to develop his strength but when he did.....oh out. He actually used the walker so much he broke off one of the legs! We had to duct tape it back on until out PT could bring another one!

Lori said...

That's awesome! So excited for Livi!! :)