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.

Monday, July 25, 2011

I Need a Vacation from Summer Vacation!

I am so overdue for a post.  There is so much to share and I'm not sure where to begin.  The summer time has been such an amazing time to spend with my kiddos.  We are so very busy over the fall and winter and most of spring that to have some down time is very, very welcome.  I have been embracing the lack of a schedule and just going with the late morning cartoons, PJ days and general lack of a schedule.  I have to say that it's been such an escape that even the few appointments we've had I've either forgotten about or messed up the dates or times, I think just because I'm so into vacation mode that I've refused to use a calendar :)   That is until this week crept up - YIKES! is an understatement.

James was at Springhill camps this week - what an amazing camp!  We have just LOVED every single second of it, so thankful that James' friend introduced us to it.  James has gone on water slides, climbed crazy high rope ladders, zip lines and done tons of other fun things in addition to learning about Jesus, praying, and sharing his faith.  Of course I don't have any of the good pics because I wasn't there but I do have a video of the closing day - this is a song that all the kids in James' group came up and sang - honestly, it was hard to keep from jumping up and dancing in the aisles - their enthusiasm is contagious!

Annie, of course has been doing her 3 week intensive therapy program (5 days a week, 3 hours a day - whew makes me tired just thinking of it).  This week was her second week.  I have to say that it's been much harder on her than 2 years ago when she previously went through this program.  Annie works so hard and we are now getting the same input from all of her therapists "she's so CLOSE to walking, we aren't sure why she's not taking steps on her own" - we aren't sure either but are eager to see Annie start.  At this point we are pulling out all the stops, trying everything that can be tried and keeping an open mind about most things, which has included ordering a SWASH, pulling out the (dreaded) thera-tog suit again and trying e-stim (electric stimulation) therapy.  Here is Annie in action at therapy this week:

Tired out!

Gracie - oh my sweet little Grace.  Gracie has continued with her gymnastics this year but at this point being only 4,  her classes are only once a week.  That means that she has been spending lots of time at Annie's therapy, running various errands and going to appointments with mom.  This crazy week has been toughest on Gracie so on Thursday I decided to treat her to a mani/pedi (which also meant that mommy got pampered - a nice perk!).  Gracie loved it!  It's funny how our home dynamics are, James is the oldest and Gracie is the baby, yet Gracie has to play the big sister role to Annie.  This puts my sweet Grace in a unique situation - is she the caregiver because of her sisters condition or the care receiver because of her birthing order?  I tend to overannalyze things so I'm tying to keep it in the back of my mind and be very sensitive to her needs and wants but not make myself crazy over the whole issue.  I want for Grace what I want for all my kids, for them to feel not only needed and wanted but also that she is a very important girl, that she is loved by God and that she is a treasure no matter what is going on around her.  Of course there's a balance to it, I think at age 4 she's already a little too "at home" when she's in the salon :)

So combine all this fun with a crazy rare rash, substantial GI issues, a few trips to the peds, lots and lots and lots of medical phone calls, an eye doc apt. and a wonderful, supportive, helping husband who was stuck working late every night this week all in 100 degree temperatures and you've got yourself one crazy week!  I promise to post a lot more about the fun things we've been up to this summer, that will be a much longer post :)

1 comment:

  1. Good to hear from you! We've missed you McDonalds!

    ReplyDelete