Next visit was with Patricia Winders, who wrote the book , Gross Motor Skills for Children with Down syndrome. Even though we have an awesome PT that we work with weekly, she just showed us how to tweak some of the things we were doing to help her a little bit better. The fantastic thing is that she was impressed with the skills Madi is doing already! She thought her hypotonia is very mild. This is sooo awesome to hear!!!!
I definitely know that she is delayed but it is hard to gauge how she compares with other children with Ds. And to be honest with you, it doesn't really even matter how she compares. But the nice thing about hearing that her low tone is mild is now I have a general idea of when I can expect her to reach her milestones. For example, children with Ds can walk anywhere between 13 months and 48 months. Well.......there is a BIG difference between the two. So, if her lack of tone is mild......I can probably expect that she will walk sometime around 2 years. I certainly don't expect her to be at 13 months but unless something drastically changes, it certainly won't be at 4 years old.
Overall, she is doing really well!!! Eating good, head control is good, she's tracking objects, grabbing at toys and her feet. She's getting more social. I don't have to work quite as hard to get her to smile!
I am just hoping I can stay on this "high" for awhile. I know that I seem to have these "highs" but then sink back down and am worried about everything again. If I am feeling low.....I just have to look at this smiling little face and it brightens me right back up!!!
4 comments:
I'm so glad you had such a great visit at the clinic! It's so wonderful to get all those questions answered, and to learn so many new things to help her development! I always look forward to our visits with Sammi's geneticist, too, to get lots of questions answered. Sounds like Madi is doing great! Love the adorable pics... :-)
Hooray for such a great day! She is a cutie!
Wow Karrie, that is quite possibly the cutest smile I have ever seen! Madi is such a cutie pie! You are right, when you are feeling down, just look at it, that pic could light up a city!
Adorable pics! Thx for the book referral too. So you go to the DS clinic @ PCMC? Is that for therapy or for your pediatrician or both? We will be there for Austen's heart surgery (right now he's @ UofU NICU) but have heard that's a great program over there. Thanks for sharing the details, learning from you!
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