What do you want for breakfast?

I put Goldie in her chair for breakfast and asked what she wanted. I wasn't sure what I had to give her. We were out of her waffles and bananas. So I look over and she is doing her sign for popcorn and she says "pop". I was so excited! Now here is the part where I feel like crap. We had to leave for Kindermusik and I did not have time to make popcorn. She accepted cereal instead. When it was gone she signed more and said "mo".

The Vision Therapist came today and I filled her in on the new dr. While I was telling her about Goldie signing at breakfast she signed eat and said "eeeah".

This is big because when she started walking she stopped signing and talking. Its nice to see her words coming back. I think her low vision has also affected her ability to learn sign. She can't see movement well, so I don't know what our signs look like to her. We're going to start using picture cards as another communication tool.

Lisa left a comment asking about the treatment for Goldie's nystagmus. It will most likely be surgery. There is a procedure to move the null point and a tenotomy to lessen the jerking. After surgery, she will need more vision therapy to learn to use her new vision.

Feet

I talked to Goldie's PT about her walk. I thought I noticed her walking more on the insides of her feet. She said she had noticed her "turning in" a little bit. I told her I'm open to suggestions. So next time we see her we are going to talk about getting Goldie something more supportive than the shoes she has now. I still have her in soft soled shoes. But I always let my kids go barefoot, so I'm not sure what we'll end up with. I still feel like there are so many little things (and big) to learn about with DS.

I know this is silly, but it bothers me. It's just another reminder that things are different. And then a family member stopped by with some "stuff" yesterday. One thing was a pair of socks for Goldie. They were marked ages 3-5 years on the bottom. I commented that Goldie has always had big feet. So, this family member starts telling me no, she doesn't. Then compares them to my niece's and goes on about how my niece is running and Goldie isn't. WTH? My niece is 2 months older than Goldie and has always worn shoes about 2 sizes smaller. And oh yeah, she doesn't have Down syndrome! Now, her cousin's feet may have caught up, but for a kids with DS, Goldie still has some good sized feet. Maybe I should invite this person next time we go to Target and let her chase Goldie around the store. he he he.

Edit: Here they are while she sleeps sideways in the recliner.

More PT stuff

When Goldie was born her muscle tone was VERY low. It was the first thing I noticed when I touched her and I kept asking everyone about for the next 15 hours. (They all played dumb)

She started with OT at 5 weeks and then we added PT at 6 months. Her OT worked on holding her head up and sitting.





The PT and her pediatrician gently tried to prepare for the possibility that Goldie may not walk until she was 3 because of her low tone and she would not bear any weight on her legs at all. I would see moms with their babies standing on their laps and be a little green that Goldie couldn't do that. One of things that I think really helped Goldie was infant massage. I gave her a massage every single night until she turned one. Now we try to do it every other day or so. When she was 10 months old she woke up one day and she could put weight on her legs. It was the strangest thing because it wasn't gradual. Something just seemed to click for her.



That is also the month she became mobile. It wasn't a crawl or a scoot. She would sit, lean forward on her arms, and pivot her butt to the side. Hank nicknamed her Chim Chim because he said she looked like a monkey.



Then around 13 or 14 months she started crawling. But, she crawls without putting her right knee down. She uses her foot. This drives the PT batty. If Goldie is sleeping on her stomach she will even keep her right knee in the air. She also started pulling up on furniture around this time.




During the time from 8 months on, we used to "walk" her around. I would support her weight and encourage her to make stepping motions across the room. It is supposed to help with muscle memory and is the idea behind treadmill therapy.

Well, when she started cruising at 16 months she also started trying to step sideways. At 19 months Goldie took her first steps. We helped break the pattern of side stepping by supporting her as she walks up the steps. You have to move your legs forward to go up and she thinks its great. I'm usually pulling her off the steps. Another thing this has helped with is strengthening her left leg. When she began walking she would always lead with her right leg and the left would catch up, but never pass the right. I don't notice her doing this as much.



Now, at 21 months she is able to stand up on her own and stay standing. Her PT said some kids are so motivated to walk that they don't bother learning to stand until later. She is also stooping down to pick up toys while keeping her balance.

I do worry about her left leg being weaker than her right. I notice it in her left arm and in her left field of vision, too. (Vision is a post for another day) I wonder if this will go away or if her right side will always be dominant.

On The Move

Goldie is walking everywhere now. It has quickly become her favorite way to get around. The funny thing is she started walking before she could stand well or get up to standing on her own. But,she can do both now.

A couple days after Christmas it was above freezing so the big girls wanted to roller blade on the driveway. Mini Me insisted that Goldie needed to come out and watch them. She was right. Goldie joined right in walking around the driveway.

Here she is zooming right by me.


The Frankenstein Walk. Don't mind the pile of dead stuff. That is where the tree was that fell on our garage this fall.


Goldie goes to playgroup once a month and enjoys all the cars and trucks there. So, my dad got her this big truck to push around. Hank corrected me, it is actually a uke. Anyway, pushing it outside will give her practice walking over different types of surfaces. And she can fill it up with goodies she finds along the way. Not to mention we need a change from shopping carts and baby doll strollers. Her sisters like to put her in the uke and push her back and forth.