Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Saturday, December 11, 2010

Stepping it Up

in leu of the last post and Annie's very fragile bones we have stepped up our weight bearing exercises - I'm optimistic and willing to try everything but honestly Annie is very active and on her feet quite a bit during the day (health permitting) so I don't think it's the weight bearing that is lacking, but it's worth a try! So, in addition to Annie's normal daily routine of stretching and strengthening we have added an additional 1/2 hour of pure static standing each day. We tossed around the idea of getting a stander but Annie can stand unassisted and I don't want to take that away from her. She stands very well, we are working on posture and alignment and I think you can tell from the video that she is getting straighter. She struggles with balance but can usually correct herself and stand the full 30 minutes without so much as a break. I do have to be within arms reach because if she were to fall she has absolutely no protective reflex so she would timber and land flat on her face - ouch!
If this video doesn't play click here. Sidebar: (notice in the video only 1 arm brace and the unbraced arm does NOT go into her mouth, not even once in the full 45 second video!!! YES! For 2 days now we have been able to go completely unbraced for a couple hours with only a few "out please's!)

Sometimes we have Annie stand with one foot forward we make her hold that position and then we have her stand with the other foot forward (almost as though she is walking with a long pause at each step) to work on the muscles it takes to walk.

Some of the other things we work on are standing on 1 foot - it's modified of course - we use a round, squishy disk - Annie bends her knee and puts one foot on that and weight bears on the opposite foot - she can put some weight on the disk but since its squishy its unstable so she would topple if too much weight was on it.
If this video doesn't play click here
This exercise has been great for strengthening her hips which of course we need for the weight shifting part of walking. We have also been working tirelessly on sit to stand and stand to sit. We have a homemade bolster (rolled up remnant carpet with the carpet side out) she sits on that (which of course is unstable so just sitting causes her ab muscles to fire) and we go up and down and up and down - usually 3 sets of 10 or 15. We work on strengthening her glutes by putting her tummy down on an exercise ball and assisting her with lifting her leg up off the ball. We make her "walk" up stares at least a few times a day which is easy in a colonial when the play room is in the basement! And of course walking, Annie usually laps the house between 15 and 30 times a day (makes me a bit dizzy), in the summer she's able to make it all the way down the block and back and once all the way to the PARK! If there was one way to describe this child it would be motivated! Which is such a blessing!! For the most part Annie is only limited in what I am able to provide. We lost our respite care at the end of summer and I have yet to find anyone, even interview anyone to help out. Annie's not in school much, only about 12 hours a week and school provides very, very little PT and her goals in school remain extreamly inappropriate, Annie is far beyond accomplishing them. She is in in private therapy for 1 hour 40 minutes a week (split between 50 minutes of PT and 50 minutes of OT with the most wonderful therapists on earth!). Of which I am there with her to learn more ideas about what else we can be doing at home. It's difficult trying to single handedly be someone elses hands, feet and voice 24 hours a day when you are also called to be a mother to 2 other little ones and oh yah, a wife too (poor Scott doesn't get much attention these days, thankfully he understands the struggles) - this post was NOT intended to be a pitty party by the way.

I have hope for a cure, so much hope, really, I could honestly say that I would bet my life on a cure, the problem is when? I wish I had a magic ball just so I could know the date. I just want to see that light at the end of the tunnel. I could push through, I really could even if it was longer than expected I could make it if I could just put a timeline a figure on how far out we are. Unfortunately that's just not the way the world works (even though it should :). So I will wake each morning, down the coffee, and continue to put on pot after pot and grab my little girl and continue to work with her all day, every day to bring out what I know she holds inside.
After all, neurons that fire together wire together (to quote the GREAT Dr. Djukic) and if she doesn't use it then she looses it and looking at this beautiful, strong, sweet girl all I see is potential and Love in it's purest form (next to Jesus that is). Loosing it is just NOT an option!

I can do ALL things through Christ who strengthens me! Philippians 4:13


  1. I love to see our girls standing! It is amazing to me. Cristia Isabel was able to stand for a few seconds and she lost it. We work every day on that. I can't wait for the day when she walks !

  2. It sounds like Annie is doing awesome. You are absolutely amazing with her. We, too, are doing the sit-to-stand practice. It's hard to fit it all in and it's easy to get discouraged when I don't see changes. You are so motivating, and I could always use some motivation. Thanks for sharing!