Mackenzie update: In Pt/OT Mackenzie hasn't had much change. She has a little bit of issues with her left side being weak, but we are working on it. She still has OT and PT 2x's a month for now. In terms of her speech, there has been a little change. She is trying to use more words, but they aren't getting any clearer. She is finding ways to let us know what she needs, so she is communicating better. I downloaded a program to her Ipad called verbal victor that I am in the process of updating to use as an augmentative communication device.
Health wise, has been a little rough lately. A few weeks ago, Mackenzie got hives for the first time. I had no idea what they were and the kept moving. I had never seen hives before. So, I took her to the emergency room and spent a few hours there. They gave her a steroid and benadryl and sent her home. This past week, my child has thrown up twice. We passed around the stomach flu and she seemed to have got it Saturday night and then again last night. She got to sleep with mommy last night and she loved it.
A month or so ago, we were having issues with her weight and we made some minor dietary changes and that seems to have helped because her weight has remained stable. She has not gained any in almost 2 months. Yay!!!! I am so proud of her. Also, we are no longer on growth hormones. Believe me before you say something, this is not by choice. Due to circumstances beyond our control she is off of them for the time being. I am hoping to have her back on them by the first of the year.
Mommy update: I am doing pretty well. Busy with work and also, I have been training to run the Las Vegas half marathon the first week in December. My training was going well, but then I caught the stupid stomach flu and took a few steps backward, but I will continue to train and do my best. I have been having fun doing lots of fun things with Mackenzie, but instead of typing a novel blog post, I will show you:
Feeding ducks at Bonnie Springs
Playing around at Bonnie Springs
Riding Blueberry
Enjoying a sucker during trick or treating at Springs Preserve (before you judge I am an everything in moderation parent)
Hello,
ReplyDeleteFor Mackenzie's weakness on her left side, I can suggest you (as a person with disability) to alternate easy/difficult work.
If you put on too much difficult work on her left side, she will avoid it because she is too discouraged.
What you can also do is starting with something her left side already knows, then progress toward something new.
The "something her left side knows" can be as small as taking a small stuff, like a watch (a cube may be too big for her left side).
Don't be afraid of going behind when the work gets too difficult : it's not a failure, rather a "going behind to jump better" as we say in France.
And don't be afraid to start small. She will get bigger goals, but if you see only the big goal, it's too daunting. So cut it into smaller goals, and you can be sure that big goal will be far much easier to arrive :D
Also, use something which Mackenzie likes : she likes pencils ? So you can make her interventive exercises based on pencils, like catch the pencils, or roll on the ball which has a pencil shape etc etc...
Mackenzie will manage to use her left side.
But like everyone, she has a dominant side. It's even more true for people with disabilities, especially motor ones (I have ADHD + Single Sided deafness, and my left side is quite weaker than my right side. Quite interestingly, my hearing side is much stronger than my deaf side).
I think that even very small changes on how PT and OT is made may solve the avoidance problem (she avoids a too difficult task).
Hope it helps
Hi! My name is Brooke and we are considering adopting a little 3 month old with PWS - would you mind contacting me! I would love to talk with you!
ReplyDeleteThank you!
Brooke
bannessa52508@gmail.com
wwwTheAnnessaFamily.blogspot.com