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

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

The CURE

When Annie was first diagnosed with Rett Syndrome I was devistated.  I was also 5 months pregnant so I wasn't able to "flip out" like I really wanted to, which in a way, was a good thing.  I had to pull myself together and keep myself sane for the sake of Gracie.  This was 2006, while we had a little hope for treatment, because in 1999 the gene for rett syndrome was found, we were still way off from thinking that Annie would ever be CURED.  We thought maybe there would be something at some time to help her but really we were just trying to wrap our heads around that fact that we had a 15 month old who couldn't walk, barely crawl and spoke only a handful of words and we were told that she was going to regress.  Regress?  We thought, what could possibly be taken away?
Stupid question, the months that followed brought our answer and we realized all the awesome accomplishments a physically delayed 15 month old baby girl had (lesson learned - never take ANYTHING for granted).  So we regressed, we got breathing problems, our immune system dropped, our weight dropped, our swallowing and hydration became difficult, and all of our awesome hand function slowly diminished.

Scott and I had watched our middle child regress and go through some major health issues all while bringing a new baby into the world and trying to enjoy every second of this new miracle, not to mention cherishing our oldest, James, 3 years old at the time.  We had learned a great deal about Rett Syndrome and the devistation but were intrigued by the research and the fact that there was actually a faulty gene that caused this.  We got a lot of comfort in the fact that there was a reason for all of this, a reason that we could see and that was being researched, and if there's a reason for it, if we know what causes this why can't we just fight against it?  We were on the internet daily - many times a day checking pub med and researching how the brain works and what is this MECP2 thing and Annie certainly has digestion and nutritional issues, what's with that?  Why isn't she sleeping?  There were no doctors to turn to, we had been to so many that told us "sorry, we don't know a lot about Rett Syndrome yet".  So, we took it upon ourselves to find out.  I think it was actually therapeutic, at least for me.  I like to know what's in store and I wanted to just solve the problem, I wanted to just fight against the illness.  The problem was that there was no treatment and really, researching, it didn't seem like there would really BE any real treatment.  The girls that were already affected would be really hard to treat, they were working on trying to help the symptoms.  In my heart I realized that there were just too many symptoms and that this was only going to get worse.  I held on to God, the only one who could turn this around.  but I was torn between believing God could work miracles and the fact that "God doesn't make mistakes".

Enter February 2007.

I got on the internet for probably the 3rd time that day to check if anything came across rettnet, or my news feeds or pub med, anything, I was looking for some sort of glimmer of hope.  Scott was at work at a new job, I had a 3 year old, a 2 year old that was in the throws of regression and screaming endlessly, and a 4 month old new born baby.  I got on the computer and read: RESEARCH BREAKTHROUGH - Dr. Adrian Bird had succesfully REVERSED the symptoms of Rett Syndrome in a mouse model.  It is possible that the girls already affected by rett can be CURED!  Oh dear God!  I hit my knees and thanked God for answered prayer.

Since that time the research for Rett Syndrome has been moving at "breakneck speed".  Much of this is due to the dilligent, tireless work of Monica Coenraads at the RSRT.  Rett Syndrome has a known cause - a mutation/deletion in the MECP2 gene, Rett Syndrome has been REVERSED in a mouse model.  There is every reason to believe that Rett Syndrome WILL be CURED and not only that but cured within our lifetime, not just our lifetime but, if we can continue to fund research, potentially our girls could be cured within just a few years.  Equally exciting is that a cure for some of our symptoms may even be closer - not a help for symptoms, not a way to help some of the motor issues, or a med that "may help some girls try to communicate" but an actual CURE for some of the symptoms of Rett.  This is exciting!  This is an answer to prayers.  This is a miracle.  This is straight from God.  There really is no other way to explain how fast the research has moved in such little time.

So did God change is mind?  I don't think so.  Is Jesus still alive?  Does He still perform miracles today?  Why are we so quick to believe that someone could recover from a stroke or from cancer, why is there hope there but no hope when it comes to childhood diseases, genetic disease and chronic diseases like diabetes?  Do we think that God is capable of healing when it has to do with some diseases but not others?  Where's the cut off?  If it's genetic then His mind is made up but if it's something environmental then He is capable of devine healing?  or is it chronic vs. acute?  I do not consider myself a well versed Christian, I haven't been studying the bible long but I do know that I have come across LOTS of verses that show Jesus healing, I'm not sure I've come across any scripture where someone was sick, believed in the Lord, asked for healing and had a response from God "you know what, I can't help you with that disease".  With God ALL things are possible and that's what I've chosen to believe.  I believe He will cure our Annie, I believe that we all play a part in that cure.  I believe Annie is here for a reason, she has shown not to take anything for granted and I believe she will show that to everyone she encounters, this is her purpose and her healing will be a testimony that God is still working miracles today.  I believe that she could be cured tonight, just a touch from the Lord is all it takes but she also may be cured in a couple years through the research that is being conducted and allowed through the hands of God.

I have always believed strongly of this miracle and thankfully God has given us the research to sort of "back us up" but we encounter so many people who look at us with pitty when we tell them our cure is coming.  Some say "that's right, you keep believing that" or just sort of pat us on the shoulder as if to say "it's been 5 years and she just keeps getting worse, if that's what you need to say to make yourself feel better".  Recently I ran into a friend, she asked about Annie and I told her of the research and that we were certain to have a treatment within just a year or so, she looked at me and said "I'm glad you're being realistic and talking about a treatment and not thinking she's going to be cured".  Ouch.  I went home a little disheartened and realized her comment didn't shake my faith in a cure in the slightest, I was actually sorry for her because she didn't know the God that I know, that ALL things are possible to those who believe Mark 9:23 and that faith is the substance of things hoped for the evidence of things not seen Hebrews 11:1  If Annie truly is a testimony that God can still perform miracles today then of course there are going to be those who don't believe, if everyone believed there would be no reason for a testimony.

So we will continue to believe that our Annie is trapped in this body, we will continue to love her and treat her as the perfect 6 year old that she is.  We will continue to pray and believe for the cure.  We will continue to try to convince others of her understanding, intelligence and beautiful personality.  But it will be so much more exciting when she can actually speak of these things all by herself.

To find out the latest on Rett Syndrome Research Click Here:

To be part of this miracle please donate Here

Thank you to all who are praying for Annie, for Rett Syndrome and believing for our Cure!

What we've been up to

Oh how this child amazes me and makes me smile.  Annie's been feeling so great lately.  I am drinking in ever single second of it, I know that it is fleeting and that the time will come that her pain will come back and honestly, I'm thanking God for that because it's knowing the pain that keeps me from taking her happiness for granted.  Soo, this is what our amazing lady has been up to:

Just looking cute

Annie has been doing awesome on her computer lately.  Our rep came by the other day and set her up so she can control the TV, we added music and she can control the MP3 player (we played "freeze dance" the other day, Gracie and I danced when Annie turned on the music and then would freeze when she paused it!), We have hooked her up to wireless internet so she can use her eye gaze as the mouse (haven't tried this, seems a bit challenging but I know Annie will get there) and of course we haven't forgotten education - we set up a page where Annie can start to learn her Dolche Primer sight words through the Unity symbols - I know, take a second to actually think about that - Crazy huh??  Here's a video of Annie turning on the TV with her computer - she's too cute, so proud of herself!

Our wonderful friends lent us their stander.  We have never really been interested in getting one because I feel like if Annie can stand independently we shouldn't take that away but when our friends offered us this one we thought that it would be good for extra time on her feet.  I'm so glad we did because Annie has been LOVING it!  The first time I put her in it she was so happy that she didn't have to worry about her stability that she threw her arms around me when I came close and gave me a big hug!!!  Hugs are precious, it takes so much for Annie's hands and arms to work simultaneously to give a hug that on the rare chance you receive one you enjoy ever second of it.  

Here is a video of the girls and I having a huge dance party in the living room during the Super Bowl half time show.  Annie was able to dance all by herself in the stander!

That's about all with Lu-Lu.  We are also trying to get her set up with the LOKOMAT therapy program again, I'll keep ya'll posted if we get in again.  

Gracie is just as bouncy and bubbly as ever!  She is diggin' her gymnastics class!

 and has been really loving school and hanging out with her friends!  This girl keeps me on my toes, she's my little mini-me, always making sure that everyone is following the rules in the house and helping me with all the housework.  She started calling me her "Bestie" a couple weeks ago (which I am just LOVING!) and has recently been starting to call Annie her "Bestie" too!  I just can't get over how cute it is.  Gracie loves to play with hair (she's such a girl) yesterday I saw her playing with Annie's hair.  It makes me so happy to see my girls becoming so close.  

James has been keeping busy too.  He did the Awana Grand Prix at our church - his car did great but didn't place.  (It's the red one) But he'll get another chance when he does the Grand Prix with the Cub Scouts.  

James started Cub Scouts this year, he's loving it!  There's been so many great outings and he does it all with his DAD!  Woo Hoo, they get to spend some time together and I don't have to get involved with any of it - it's a two fer!  Here's my handsome guy in his uniform.  

James has also started karate again and is having a GREAT time with it again.  He's an orange belt right now and is hoping to move up to green soon.  

Scott and I haven't been up to much, just trying to keep up with the kiddos and keep things running as smoothly as possible.  It's harder than it seems but I couldn't imagine my life any different.  I love these little ones they are such blessings!

Dress Up 2 Cure is BACK!

Join us for our 5th Annual Dress Up 2 Cure Campaign!  Over the past 4 years more than 6,000 people have participated in Dress Up 2 Cure to raise money for Rett Research, raising a total of $180,000!  Rett Syndrome is reversible!  The science is there, the funding is not.  Join us in reversing Rett!  We are looking for schools to get involved with our dress up 2 cure event!  If you think your childs school may be interested in dressing silly contact me for more details.  What about businesses?  A dress down day?  How about planting a Garden of Hope?  Got your own ideas?  Contact me and we will help you every step of the way.  Don't have the time to get involved but want to contribute to funding a cure for Rett?  Check out Annie's fundraising page HERE.  Thanks for getting us closer to our miracle!

Snow Days!

We have been enjoying our snow here!

 Gracie snow angel

 Gracie and Scott heading down the slopes

 Scott helping Annie to the hill

 Annie waiting to go down the hill

 Poor Gracie, ran into a tree..... twice.  :(

 Scotty heading down with Annie!

Back up!  

James and Danny heading down on the tobaggin
The kids have had the most amazing time playing in the snow this year.  Even Annie has gotten out to enjoy the white stuff a bit.  Scott is an amazing dad, he stays out for hours with the kids heading down the hills and back up again.  I stay mostly in the car or in the house with the hot chocolate and goldfish crackers for when the kiddos get hungry and cold.  I'm pretty sure I got the cushier job!  

I'll Fly!

Dana Marie, is a Canadian gospel recording artist, who has written a beautiful song for a little girl, Anna, who is battling Rett Syndrome. This song is written from the perspective of Anna to her mom and dad. It is absolutely beautiful! You can preview the song here and then download it for $.99 here! 50% of the proceeds from the download of this song will be donated to Girl Power 2 Cure! AND Every purchase enters you to win the beautiful "Vintage Pearl" necklace pictured here!

One glorious day my Annie and the thousands of girls suffering from rett syndrome will be free from their broken bodies and they will FLY!  Each day we get closer and closer.