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.

Friday, July 27, 2012

Surgery update

Annie has gone down hill lately with her physical abilities.  She was once able to walk all the way down the street and back (with assistance) and has recently come to point where she is only able to walk a few painful feet and then her leg gives out.  She was once able to stand in her stander or with assistance for several hours a day but recently she is only able to stand for 10 minutes until her leg buckles.  Annie has always been the one who has initiated walking and standing, it's something that she wants to do so much and would complain if she sits for too long but that has slowly changed to not wanting to be on her feet and complaining when we do make her stand.  She has been noticeably in pain when standing and when asked she always says that the pain is in her right knee.

Of course we are followed by an Orthopedic surgeon so we were anxious to get in to see him in early July and see what the X-rays showed about what might be going on with Annie.  We worried that her hip subluxation had gotten worse and that was causing all the problems.  Unfortunately we were right.  Our Ortho told us that Annie's left adducter tendons were too tight (we already knew this but didn't realize to what extent) and were causing her hip to be pulled out of socket, her left hip was now 35% subluxated and getting worse, he suggested an out patient surgery where he would cut the tendon in her  left adducter as the only solution to save her hip.  Of course we were on board with the surgery and he squeezed us in as soon as he could.

So, we were given a date for surgery and started to prepare which includes updating Annie's home medical chart, researching the procedure and faxing information to the anesthesiologist so they are aware of Annie's conditions and take the necessary precautions in putting her under.  All was set and then, they changed the date on us.  Which would have been fine but Scott was heading out on a business trip that was already booked and he couldn't get out of it.  Ugg, there goes our rock, Annie and I would have to do this on our own.  Well, not exactly on our own, we had wonderful Grammy to come with us and our amazing Miss Lauren to watch James and Grace and my wonderful sister to stay with us overnight to make sure everything was OK after surgery.  We are so blessed to have so much love and support!

pre op smiles!
So surgery day comes and we are called to come in early, we did and everything worked quickly and efficiently.  We got right in and were introduced to everyone that would be working with Annie, we explained everything over and over again and stressed the importance of using very little anesthesia and that Annie needed to be watched very closely because her condition puts her at high risk for severe complications.  I felt like I annoyed everyone to the point that they were rolling their eyes and writing "crazy, over protective mother" in her chart.  Annie breezed through surgery so easily, the anesthesiologist listened to my concerns and gave her very little medication for the quick procedure and kept her for observation until we felt comfortable and asked to leave.
Post op smiles!
It's strange how things work out.  I started feeling guilty about the hard time that I gave everyone and came home to find on facebook that a little girl with Rett Syndrome who had a similar surgery to Annie's on the same day was now in the PICU with complications 2 days later.  It was then that I realized why I had been so persistent and why I had pushed so hard for Annie to be treated gently.  It's because girls with Rett Syndrome are so very fragile.  This little sweet girl was taken care of by world renowned Rett experts and a phenomenal Rett clinic and she still had complications, not because of her care, because of Rett.

I couldnt help but think, why was my Annie OK?  Why did my Annie have such an easy time with this procedure when her Rett sister was battling so hard with hers.  There is no answer except Gods grace.  His grace carried Annie safely through an uneventful surgery and grace will carry this other sweet Rett girl through the complications and make her stronger for it.
Slumber Party! After surgery Annie was ready to party!

Day after surgery hanging out at the park
I look at these 3 beautiful children and see Gods grace everywhere.  I am so blessed and so thankful! 
It's now 3 days after surgery and Annie is doing great!  She had a TON of bruising but didn't have much pain at all, she is sore at the end of the day but it's well controlled with just a dose of motrin.  She has been on her feet walking, standing and even rode her bike for a short time.  We can see a change already in the way she sits and stands, she's so much straighter now that her left leg isn't so tightly pulled in she is able to weight bear symmetrically.  In time we hope to get her stronger and back to where she was at this time last year.

Tuesday, July 10, 2012

This Sweet Smile is Back

Annie's sweet smile has come back.  It happened about a week ago, I'm not even sure the day but I realized that there was much less screaming, I saw that sweet smile that lasted not just minutes but hours.  I saw that this happened day after day and realized, "oh my gosh, my Annie is BACK!".  It's very strange to understand but our kids can come and go and there really isn't a reason that you can pin point for it but the people closest to them can tell.  We are blessed to have an amazing support.  I didn't even have to say a thing and our wonderful Lauren said "it's so great to have our Annie again, she did awesome today".  Miss Bev who helps Annie at Bible school took one look at her when she rolled in last week and said "hi Annie!" then looked at me and said "We've got her back don't we?  I can tell by her smile"!.  I'm not sure what makes my heart shine more the fact that Annie is smiling again or that we have so many wonderful people by our side that clearly know our Annie so well.

Of course things have changed, it's SUMMER!  Soooo, maybe her smile is back because our schedule is gone and everything is just go with the flow FUN!  One thing people assume with Annie is that she needs to be kept on schedule.  Annie has NEVER had a schedule and trust me, this type A personality mom has tried over and over again to put this girl on a schedule (just ask her Baby Wise Big Brother).  Annie has always kept her OWN schedule.

It may be because she's spending tons of time with her brother, sister, cousins, and friends!  Summer is great for hanging out with everyone!!!

Maybe it's because she has a brand new cousin!

Or because the weather is nice and warm!'
Maybe it's because Annie just LOVES loud noises and bright lights!  Another thing that people assume is that Annie can't handle loud noises and chaos and that couldn't be further from the truth.  This girl thrives on loud noises and just LOVES fireworks.  The noise makes her giggle and the lights keep her attention.  We just happen to have an annual 4th of July party every year.

Or maybe it's the awesome pool that her favorite Aunt and Uncle heat to the perfect temperature just for her.
I don't know what the reason is but really, it doesn't matter, all that matters is Annie's back and we are just going to love and enjoy and remember this wonderful, happy, content, loving time we have with her.