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.

Thursday, March 17, 2011

I'm Living in a Fantasy World

We had our intake today to see if we qualify for the Children's Health Waiver.  The waiver will (among other things) allow Annie therapy - all kids of therapy - OT, PT, speech, recreational therapy, music therapy, behavioral therapy, you name it, if she needs it she will receive it without a fight, without needing to reapply every 3 months, no getting put on hold (right now we are on hold for PT and have been on OT hold for over 2 months), no being told that she's been in therapy too long and no longer qualifies, nothing, just therapy when she needs it until she's 18.  An added bonus, the therapy is done IN HOME!!  YEP!  no more driving an hour round trip for 50 minutes of therapy!  What a blessing!
The problem is that in the state of MI there are only about 500 of these children's waivers and there is a preliminary questionnaire that is taken to determine if you qualify. The severity of your child's illness gets you placed higher on the waiting list.  Needless to say that the intake today was not necessarily one of the funnest things ever.  I had to write out a 24 hour "day in the life of Annie" to determine just how much time I spend caring for her - yikes!  Eye opening!  I realized that I need 30 hours and that this is only 1 of my 3 children.  I looked at it and honestly wondered how it all gets done.

Now on to the discussion about the laundry list of medical issues that Annie has.  It's amazing how many things are wrong in that one little body that we just sort of deal with in a way that is so second nature we don't even realize it's a problem anymore.  I mean really, just talking about Annie's medical issues confirms the fact that it's nothing short of a miracle that this child is living, breathing, thriving and progressing, she is truly amazing!

The feeding issues next - is there any special diet?  No, she eats by mouth all day and eats anything we're eating.  Oh, but wait, she's gluten free, and she can't tolerate milk or yogurt, oh yah, her food has to be chopped, oh and she aspirates on thin liquids so she can't have those, oh yah and nothing of a thick, sticky texture because she can't swallow appropriately and she chokes on things like that and trust me when I tell you the Heimlich maneuver does NOT bring those things up.  Oh and did I tell you that she can't feed herself or pick up a cup oh, or tell me when she's hungry or thirsty.

About this time Annie's bus comes to drop her off.  I grab her and bring her inside.  The social worker meets Annie and notices  - oh, you didn't tell me she wears AFO's, oh yah, and arm braces as well.  Why? Cause she hand mouths, is that why she has these calouses on her hands?  No, that's because she wrings her hands constantly.  Oh, and she has a vest that she wears to support her trunk when we work on walking and oh yah I told you she could stand by herself but no, she can't GET to standing on her own.  Why do we have a stander?  Oh, that's because she can stand by herself but she has no protective reflex's so I have to be within arms reach of her because if she falls she will timber like a tree and break her nose.  Oh that noise?  That's her grinding her teeth, yes, it happens constantly.  That other noise?  Oh, that's her swallowing air, it's called aerophagia and causes her severe GI discomfort, no, there is nothing they can do for that either.  Why is her face turning red?  Oh, that's because she holds her breath, or not really holding her breath but rather her autonomic apraxia actually stops her wind pipe from opening and she can't take a breath.  How often does that happen?  Only when she's awake. Yes, constantly unless she is sleeping.

Does she have behavioral issues?  No, absolutely NOT!  Well, she does scream quite a bit when she's tired or bored and she's not able to nap or go to sleep without being held and snuggled to sleep.  Of course she's bitten me before.  How often?  Usually at least a few times a week.  Yes, she's broken the skin before, she's got strong jaws.

Oh man, are you serious?  Is this what actually happens in our life?  Honestly, this is usually how I see it:
We have been dealing with most of these things for over 5 years now, it's scary to think that we are actually doing leaps and bounds better than we were when Annie was younger.  I think the brain has a way of going through the motions and erasing whats obviously just too much to take in.  Whenever an intake like this comes up it's always a harsh reality check.  So glad it's over, now I just hope we qualify!

With God ALL things are possible!  Matthew 19:26

Sunday, March 13, 2011

Kids should rule the world

On Sundays Scott and I take turns, one goes to church while the other takes Annie to bible school.  It's been a while since I've taken Annie because it seems that on my turns Annie is not feeling well enough to go.  Today we were able to make it which was awesome because I almost forgot how amazing these kids are.

Here's the scene, Annie and I roll into bible school, we are 10 minutes late (as usual) and the kids are already sitting and listening to the lesson.  I take Annie out of her stroller and walk her over to the carpet, we sit in the back.  Almost instantly I see some the girls start to inch and scoot their way closer to Annie.  One gets close enough to grab Annie's hand and holds it throughout most of the lesson.  The teacher is giving a lesson on how God is invisible but He can still be seen through the things that He has made and the way that we act towards each other.  I see that lesson come to life right before my eyes.

Floor time is over, time to sit at the table and color.  2 girls ask to sit next to Annie.  I grab 2 crayons and ask Annie "which color do you want to use?"  Annie chooses purple with eye gaze.  I then put the crayon in her hand, hold it closed and move her hand around the paper so she can "color".  A minute later Annie's friend grabs 2 crayons out of the crayon box, holds them up and says "Annie do you want to choose another color?" The little girl looks at me and says "She just choosed blue", then proceeds to put the crayon in Annie's hand, hold it closed and move her hand around the paper so that Annie could "color".  The friend on the other side says "I'll write Annie's name on her paper" she writes "Annie" "I love you" with a heart.  The girls start talking about reading (typical kids are starting to learn to read in kindergarten, Annie is still learning to communicate so we haven't spent any time on learning to read just yet).  I told the girls how cool they were that they could read, one little girl said "Can Annie read?" I said, "well, lets see", we held up 2 parts of the project they were working on - one said "invisible" and the other said "seen" I asked Annie which one said "seen", the little girls watched Annie's eyes and said "oh yah, she can read, she just read 'seen' ".

Time for snack.  Annie brings her own gluten free snack and sippy cup.  I start to feed Annie a couple pieces of dry cereal.  One of Annie's friends gets up, grabs her sippy cup and holds it to Annie's mouth.  Annie drinks... a lot.  The little girl looks at me and said "she looked thirsty".  There's a book on the table that the kids could look at with 3-D glasses.  I tried to put the glasses on her but Annie's  not having it.  I tried 3 or 4 times and there was no way she was going to keep those things on.  Her friend grabbed the book and the glasses, she held them both up and said "Annie you don't have to wear the glasses, just look through them".

These kids are amazing.  Annie can't talk or play with these kids but they are still friends with her.  These kids have not been trained in how to take care of a person with special needs but they see a need and step up to fulfill it without even being asked.  They have not spent years in school learning augmentitive communication but they are able to understand and perform eye gaze communication.  They are not trained in modifying lesson plans but they find ways to include Annie in all their activities. These children do not need to see multiple trials or look at test scores to determine if someone is smart, they assume competence.  Children have empathy, understanding and a belief in every person that I think most of us start to loose as we become "educated" grown ups.  Adults need proof, children just believe.

Today I saw amazing things from 2 particular girls but the story is the same whenever Annie is around her peers.  Boys and girls her same age, some a little older some a little younger, all with the same amount of compassion and understanding.  Of course we get stares and comments but typically the stares and comments are out of curriosity, they just want to know why she can't walk, why she wears those arm thingy's, why she uses a pacifier when she's 6.  We answer their questions, they understand and Annie becomes instantly included.  One little boy a few years ago was very curious about Annie, he stared A LOT, and then got up the nerve to start asking me questions.  After I answered his questions he became such a good friend to Annie, he would help her eye gaze at which stories she wanted to read, he would sit by her and wanted to help her walk.  The funny thing was that the reverse happened and Annie became a good friend to HIM.  This little boy used to be a sort of "trouble maker" in class, he would get rough with some kids and was very antsy and didn't like to sit still.  Once he met Annie his behavior changed in class, he was so involved with helping her that he didn't have time to rough house any of the other kids or cause a commotion.  They helped each other "be their best selves" (a quote from one of our children's books about friendship).  
Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Matthew 19:14