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.

Sunday, May 30, 2010

Best Therapy Tool EVER! And other summer time tips!

I think I posted about this last year but I think it's worth another post. We bought this bounce house for Gracie's 1st Birthday when we did some researching and found out that buying one was more economical then renting one for a Birthday party. We got this one on sale and it was just over $100 but it's lasted this long - almost 3 years now! Totally worth the money. The kids just LOVE this thing, and it's so easy to put up and take down. Not to mention all the therapy sessions we've had in this thing with Annie! We can have her stand up in it and we grab her hands and jump so she can feel that movement.
We can also have her sit and the kids will bounce around her so she can work on her balance and her protective reflex.
We can also have her on all 4's and work on her upper body strength.

The best part about this bounce house is that all 3 of my kiddos have so much fun together!! See, I told you, best money ever spent!! Plus, where else can you spend about $100 and get almost 3 years of therapy??? :)

This also crossed my mind today and I wanted to share. Since girls with Rett Syndrome can sometimes have trouble with regulating their body temperature. Annie has had issues with this since I can remember. She has such poor circulation, her hands and feet can be purple and cold even on the hottest of days, however, her core body temp can increase so fast when we take her out into the heat that on days when the weather was above the low 80's we would keep her inside in the air conditioning. You can imagine how tough that was with the other two and to make matters worse, the air conditioning, no matter what the temp, would always be too cold so we would be in the house on a nice summer day with Annie in her jeans and sweatshirt. We've also had issues with bath time, in the summer with the air she will be too cold and can go hypothermic when we pull her out of the bath. We've even seen Annie go hypothermic on a 90+ degree day because we had her in lake water that was too cold. She almost instantly turned blue from head to toe and it took everything in us to get her core temp back up and we narrowly escaped a run to the ER. Not to mention that Annie has had febrile seizures when she was younger so we also have to watch her temp going up too high. Anyways, all this to say that we have taken the last 4 years trying to figure out what will work with Annie to keep her cool enough in the summer to go outside and have fun but to not get her too cold. We've come up with some things. The first is that it's too shocking to have Annie in the sprinklers or to sit in a small kiddie pool (we've actually seen the top of her body bright red from heat while the bottom half of her body was blue in the cold water - weird!) but we've found that giving her a bucket of water and allowing her to dip her feet into it is just the right amount of cool that our sensitive Annie needs. She can lift her feet out of the water if they get too cold and then put them back in when she's hot. (I know, she totally looks like she's getting a pedi!)
We also have fan misters that we have found that can keep Annie cool but not too cool when we are out and about. I bought a couple a few years ago that were specially made for "kids with special needs" and the price was outragious, now I find them at walmart, target, meijer and it's just a couple of bucks each.
Lastly, we put Annie in the shade after she's had her 15 minutes in the sun. Annie's bones are already thinning because of Rett Syndrome so we make sure not to put any sunscreen on her and we keep her in the bright sunshine for about 15 minutes. This allows her body to soak up the much needed vitamin D from the sun. Then we move her into the shade. Thankfully we have a big maple tree that gives us lots of nice shade but we also have a beach umbrella that we can move around incase Annie wants to venture from beneath the tree.
Collectively these things have allowed us to still have fun and enjoy the summer weather without Annie becoming hypo or hyper thermic. If anyone out there is battling the weather conditions and has any more ideas I would LOVE to hear them!


  1. I am so glad that you posted this info about heat regulation! We took Reagan to a birthday party at a park on Saturday and it was already 85 degrees at 10am (not unusual for TX!). She was bright red and her hair was soaking wet after about 30 minutes of walking around in the partly shaded, partly sunny park. I was curious then about what was going on so it is great to know that it is a common thing and we need to be more prepared and conscious of the heat!

  2. I Love the bucket for her feet idea! We are going to use that one for sure.