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.

Wednesday, January 26, 2011

Moving On...

Life has been slowly returning to normal from our crazy couple of months.  It feels so good to spend more time with James and Gracie and not in constant worry and distress over Annie and what might be upsetting her.  The kids are actually able to have friends over again, which is a GREAT thing because when Annie is not in a good place I can't run the kids to and from their friends or allow them to have kids over because I'm too preoccupied with caring for her.  Rett Syndrome doesn't just affect my middle child but it affects ALL of them.  When things like this have happened in the past I have been able to take time out and let our respite deal with it for a few hours a week so I can make life a little more peaceful for James and Gracie but since the end of summer we have been without respite which has been a huge challenge.  Last Friday we finally got a great college student to come in and work with Annie a couple times a week to free me up a little bit more - YES!

Annie's been on and off since my last post.  We ended up taking her off the neurontin which we determined was responsible for her lack of sleep which lead to insane screaming fits all day because she couldn't get her little body to settle down.  Problem solved right?  Well, sort of.  It seems to be taking a long time to get Annie back into her typical sleep routine. We've also been seeing a cranky Annie which we aren't used to, she crabs during the day and is doing a lot of breath holding (gave us a good scare on Sunday and got herself out of bible school).  Of course cranky whines are much easier to bear than moaning in pain so we'll take it.  But, it's more than that, there's just been these weird, little things that don't mean anything at all by themselves but when you add them up they just make a momma a little uneasy.  I can't put my finger on it, I just feel like somethings not right.  Annie looks great, she's communicating with us again, she's tolerating therapy, she just seems different, and irritated.  After going through the list of things it might be and analyzing every little movement, vocalization and look that doesn't seem quite right we've come up with nothing.  I've been known to over analyze, I admit it.  My husband has had to tell me to "give it a break" and "stop trying to figure everything out" on more than a few occasions.  So maybe that's just it, I'm over analyzing.  But just to be sure I am keeping a close watch over James and Gracie and asking them to report back any aches, pains or not so good feelings they have in the hopes that maybe it's a virus running through the house and Annie was #1 on the list.

Gracie started feeling not so well today, it started with "I'm so tired!" after sleeping a whopping 13 hours!  And then it was "my mouth is itchy" - that's a strange symptom - hmmm wonder if Annie was feeling like that.  Then "I'm so cold mom, I can't warm up" - hmmm, Annie's circulation has been terrible lately, I wonder if she felt like that.  I ask Gracie if she would like to sit on the couch and watch a movie or if she wants to play wii dance party, she says "watch a movie" YEP, she's sick!  DING DING DING!!!  I think we have it!!  I'm guessing that Annie had this same thing going on but couldn't tell me.  Thank GOD for my typical kiddos who can sometimes give me a clue as to what's going on with Annie.

Colds and virus's we can deal with, no sweat! So it looks like the MacDonald family is in for easier days, with respite and the GI pain in check I think it's time to move on past this little hiccup and get on to some fun!  

This is Annie at therapy today, much better than what we saw a few weeks ago!


  1. My Chickadee has been sick too...a couple of times. I'm so grateful to have her siblings, or even my own illness to compare to so that I can give her the help she needs.

    You are doing a great job.


  2. I am so glad that you found someone to help with respite, it makes such a big difference in my life to have some help and give some attention solely on Lauren. I'm looking forward to seeing more smiley pictures of Annie!