I'm Worn

Most of the people reading this blog are momma's.  Some to typical kiddos and some to special ones but regardless we can all relate to the feeling of being worn.  Just so physically and mentally spent that you can't even think straight.

So a couple weeks ago we were hit pretty hard with some big life changes.  These changes included the realization that we would be loosing several amazing people in our support network.  I want to cry just writing those words.  Life with Rett Syndrome is hard, very hard.  Hard for our family but, more critically, hard for Annie.  We have been so blessed that in the past 7 years we have been able to find and build a wonderful support system for her.  We've had people come and go but over the years we've come to understand and know who was in this WITH us and who was doing their "job".  Regardless of weather the person is with us for 1 month or several years it's a feeling you get when you know you can place your heart in someone elses hands.  Today, I'm heartbroken to say that 3 of our supports that were WITH us in this journey will be changing their positions in our lives.  2 will be moving on to some amazing opportunities and life changes that we are so happy to see them enter into.  and 1 we are leaving her because of an opportunity of our own that has come to fruition.  Regardless of the circumstances the fact remains that this is change.  Scary change.  Change from a support system we have come to know, love and rely on.... to the unknown.  I don't do well with change.  I like comfortable but that's not always in my control, infact, that's never in my control.

Dealing with this change, other huge issues have also come up that threaten our family.  It's something we have known about for a little while but it's another worry, another stress.  An opportunity that we have been anticipating for several years has also come up.  I thought we would be thrilled because this is what we have been waiting for but unfortunatly it has brought up more questions than answers and has left me wondering weather we are doing the right thing for our family and in the eyes of God.  This opportunity has also come with tons of paperwork and reexplaining all that Rett Syndrome has taken from Annie, all that she goes through and how our family has been effected.  I've read, heard and spoken words that make me shake with fear, anger and saddness because it was never supposed to be this way and it shouldn't be this hard.  7 year old wounds that are still fresh are once again ripped open.  I'm trying to find my footing in all of this but it's hard.  It's so much.  All at once.  My body has felt the pressure and just to add to all of this I came down with a sinus infection that has shown no mercy.

I have been hearing this song on the radio lately, Worn by Tenth Avenue North,  but it wasn't until all of this that I took these words to heart:

As I process all of this I'm realizing that despite our fears we are in good hands.  God knows what we need.  He is faithful but we need to walk by faith even when we can't see what's ahead for us. I also firmly believe that when God makes changes they are for the better.  We've been through the fire before and we always come out a little worn but also a little better and a little stronger.  We don't know what's in store but I'm certain it's all part of a great plan.  Maybe this is just another step closer to our cure.  Maybe our supports are changing because we won't need supports much longer and these amazing people that have been with us will see the miracle and be forever changed.

My prayer:  you have seen us through so much change and this change always comes from you.  You give and you take away.  You know what we need and you will supply us.  You have brought amazing people into our lives, however, people are always changing and YOU are constant.  Help us to keep our eyes fixed on You.  

Little Celebrity!

 On December 22 there was a beautiful little angel face that graced the cover of the Detroit News.  That was my Annie!

I'm not quite sure how I managed to finagle my way onto the cover as well but there I am too.  The HERO of this story is Brian Dalton!  Brain has been helping us raise funds for Rett Syndrome for 3 years now, however, this year he's going well above and beyond and competing in the Escape from Alcatraz  triathlon.

Brian says "As far as as triathlons go, it doesn't get any bigger or more challenging that the Escape From Alcatraz race. The race is also symbolic of how the girls are in essence a prisoner in their own bodies. Their minds are free, but their bodies are broken. So, to help out, I'm going to put myself and my body through one of the most challenging races I could find."  

You can read our blog post about how Brian and his students have touched our lives HERE.

You can also read the Detroit News Article HERE.

To make a donation and help Brain reach his goal please check out the right side of this blog Titled "Escape From Alcatraz" it will take you right to Brain's razoo site where you can make a donation.  

A huge thank you to Brian for all that you are continuing to do for our sweet Annie, and to the Detroit News and Shawn Lewis (author) for seeing worth in this wonderful story, for publishing it, and for putting us on the front page for all to read!  

A Hero!

3 years ago at Caribou Coffee in Rochester a man named Brian Dalton walked in, ordered a coffee and happened to see a Girl Power 2 Cure flower.  My mom had gone to several coffee shops earlier that month and set up Garden's of Hope.  We had hoped to raise a decent amount of money with this quick and easy fundraiser but we were about to be pleasantly surprised.  

Brian was intrigued when he read about Rett Syndrome and the Girl Power 2 Cure organization, it was good timing considering his 8th grade class was looking for an organization to benefit from a fundraiser they were doing at our local Barnes and Nobel Book Store.  

Brian emailed Ingrid Harding (founder of Girl Power 2 Cure) and Ingrid got us in contact with Brian.  A few months later Annie and I were welcomed into Brian's 8th grade class and were completely blown away with the amount of kindness, support and love we were shown.  The classroom was decked out in Girl Power flowers, even the kids faces were tattooed with flowers.  Annie was given gifts and then we watched the most beautiful, heartwarming video that several of the kids made about Annie and her fight with Rett.  We were blessed!

The kids each made projects that they displayed at Barnes and Nobel Bookstore a few weeks later.  During the time that they were displayed the community was invited to come in, hear the kids present their projects and then 20% of all proceeds that night were given to Girl Power 2 Cure.  

That was 3 years ago, this event has become annual.  The kids do more and more each year and raise more and more money.  Last year Brian was able to bring in Fox 2 News and we were able to tell thousands about our little known disease, Rett Syndrome.  
Eight graders raising money for Rett Syndrome research - Fox 2 News Headlines

As if all this wasn't enough Brian has blown us away again.  This year he is not only continuing the Barnes and Nobel tradition but he is taking it a step further and competing in the Escape from Alcatraz  triathlon.  

Brian says "As far as as triathlons go, it doesn't get any bigger or more challenging that the Escape From Alcatraz race. The race is also symbolic of how the girls are in essence a prisoner in their own bodies. Their minds are free, but their bodies are broken. So, to help out, I'm going to put myself and my body through one of the most challenging races I could find."  

Here is the explination of the triathlon:  "The 2013 Escape from Alcatraz Triathlon features a 1.5-mile swim through frigid waters from Alcatraz Island to the shores of the St. Francis Yacht Club, a grueling 18-mile bike ride, and a demanding 8-mile run through the trails of the Golden Gate Recreational Area. Set against the natural beauty of San Francisco, this thrilling triathlon is a virtual postcard of the City by the Bay."  YIKES!  

To think that just 3 years ago Brian didn't know anything about Annie or Rett Syndrome and today he was working selflessly to help fund a cure is such a blessing.  Brian is a full time teacher and has 4 children of his own and still found the time to help our cause.  What an inspiration he is to his family and his students and a Hero to our girls suffering from Rett Syndrome!  

Will you help our hero and support him as he sacrifices so much for Annie and all the girls suffering with Rett Syndrome?  Make a donation HERE and leave a message to let Brian know what an inspiration he is!

  

Quest for a Cure Update!

Many of you came out and walked with us at our 3rd Annual Quest for a Cure!  Thank you thank you so much to Annie's A-Team and to everyone who donated.  I'm thrilled to tell you that we raised over $32,000 for Rett Research!!!  That pushed us to over $100,000 total raised in the past 3 years!  

 I just want everyone to know how important this is.  Rett Syndrome is a rare disease and is fairly "new".  We get a very small amount of government funding and that is only for basic research, not the kind of cutting edge research we need to CURE diseases.

 Rett research has made amazing advances in the past few years - 1999 the discovery of the gene that causes Rett Syndrome (MECP2), 2007 the REVERSAL of symptoms in a rett mouse model, 2012 bone marrow transplant arrests sypmptoms of Rett Syndrome.  Researchers believe that Rett Syndrome IS cureable in our children, however, funding research is expensive.  The science is there but the funding is not.  Money is holding us back from finding our cure and that is not acceptable.

 We choose to fundraise for the Rett Syndrome Research Trust because they are fiscal very lean.  96% of your donation goes directly to research.  When you donate you are not paying someones salary or the light bill you are infact making an immediate difference in Annie's life and the lives of the girls pictured below.  For that we are truly greatfull!

HomeSchooling Update!

I know, I know, I never update anymore.  I'm so sorry! With school for the kids and work and Birthday's and our Quest for a Cure walk, and soccer and cub scouts and... well, you get the idea, it's been so crazy busy!!!  But, thankfully we are starting to slow down a bit and I really want to let everyone know how Annie is doing!

For starters let me just say that I can't even imagine having Annie back in school right now. She is doing AMAZING!  She's learning so much, she's thriving, she's growing, she's awesome!  I'm so blessed!  This summer we discovered that Annie could read!  Our goal for this year is to determine what reading level she is at, have her continue to practice reading and expand on it!  Literacy is our top concern and we are working on it with doing tons of reading, flash cards with site words and using our ipad apps with stories that highlight the words.  

Annie is also excelling in her math skills - we have a "shoot for the stars" math wall, Annie gets a star each time she shows us she is able to skip count.  So far we have a star up for counting by 1's and counting by 2's, she's been introduced to counting by 5's and 10's but we still have yet to "test" on that.  We've been working on odds and evens and lots of other things.  Science is Annie's favorite subject!  If she gets a choice that's what she will pick to work on.  We've done lots of reading on science and watched videos and even did an experiment about properties of matter, we're hoping to get in LOTS more experiments as the year goes on.  

We've never really used a full curriculum for Annie, we've just looked at the State standards for general education and tried to find materials that we were able to adapt that would help us teach these things.  I always felt as if Annie was understanding things but there were so many "holes" in what we were teaching.  There's a difference in knowing that 2+2=4 and understanding what 2+2=4 means.  We have recently found an amazing app and website that have a complete curriculum for grades K-3 and it is all adaptable AND it is in a format that Annie learns best - short educational videos from Brain Pop Jr.!  We LOVE this  and so does Annie!  In addition to the videos their website offers lesson plans, experiments, crafts, worksheets and quizzes!  We are LOVING this and can't say enough good things about it.  

So, home schooling ROCKS but there is no way I could do all of this on my own and stay sane.  Our wonderful Lauren is continuing to come and help out with Annie 2 days a week.  She typically takes Annie to therapy but we have once again been denied (insurance issues!) so Lauren is helping us out more and more with stretches and physical therapy at home as well as lots of schooling.  Lauren is amazing, she works with Annie with such patience, she understands her so well and believes in her abilities!  Annie LOVES Lauren, her face lights up when she sees her and is always leaning in for snuggles.  Their bond is beautiful.  In addition to being great with Annie Lauren allows me some free time to work in James and Gracie's classrooms, get housework done, get my RettGirl work done, grocery shop and if you can believe it I have actually gone out several times to meet friends for coffee - GASP!  I know!  It's been a LONG time since I have socialized, it's great!  

One last bonus to home schooling is that we get in a TON of PT during the day.  Annie is doing awesome after her therapy back in July!  She is walking and standing so much more!  We do some of her school work in her stander.  We've been doing lots of tummy time and we have been using our vibration platform - it has really increased Annie's balance and muscle tone.  

Of course not every day is spent being so productive.  We have lots of days where Annie may be able to do therapy but can't concentrate enough to do school, days where she can concentrate on school but is too weak to do therapy and days where she is exhausted and her body just needs to rest on the couch but one thing is certain, she is doing leaps and bounds better than she was a year and a half ago and I thank God everyday that I am able to stay home with her and home school her.  I'm learning so much about my little Annie and everyday it becomes more and more clear that she is my very intelligent, ambitious little girl that remains trapped in a body that has failed her.  We will continue to fight daily to educate her and keep her strong and healthy until God's perfect time when He reveals a cure.  

A friend posted this video about a man who had a stroke and was unable to talk.  When his family decided to try a drug he regained the ability to speak for an hour out of his day.  In this video he talks about what it's liked to be trapped, unable to communicate.  This is exactly what my sweet Annie is going through - daily torture, being at the mercy of others for every basic need, unable to have a choice or an opinion and having others believe that you are brain damaged and unable to understand anything. My heart breaks for my sweet Annie, I wish I could take her place.  

http://www.godvine.com/Man-Suffers-an-Unimaginable-Tragedy-but-True-Love-Saved-Him-2356.html#.UJvCK2n2UJM.facebook

Why?

At 1am on Wed. Sept. 5 sweet Anna Gutierrez passed from this life into the arms of her heavenly Father and stepped into her eternal home due to complications from Rett Syndrome.

In this Rett Syndrome journey hospitals and complications and death become commonplace.  We hear of an angel passing and earning her wings almost weekly.  A rare disorder, Rett Syndrome binds so many families from all over the world into one giant, loving, understanding extended family.  We need to lean on each other for support.  Many times questions left unanswered by doctors and specialists are answered between parents and caregivers.  Its a family you never hope to join but once you're forced in your embraced, supported, cared for and loved.  When one of our girls leaves this earth we all grieve.  We grieve for the parents because we can see ourselves in them, we grieve for all the children suffering from Rett Syndrome because we see our own daughters suffering.  One child is no more important than the next, however, my grief for Anna hit deeper than I've ever felt before.

Maybe it was because we had the pleasure of meeting beautiful Anna and her wonderful family when we visited Montefiore hospital a few years ago.  We met in the hallway of the clinic, each with our Anna's and exchanged phone numbers.  The next day we spent the entire day with the Gutierrez family as we talked and chatted and watched our girls in their similarities and differences.  I remember little Anna trying to grab at my Annie's shoes as if to try to take them off, I remember thinking "what awesome hand function!" - a typical Rett mom response.  Maybe it was the connection that we made with Manny and Stefanie, Anna's parents.  The type of people who open their home, drive you to the airport so you don't have to pay for a taxi and feel like instant friends, like you've know each other for years.  Maybe it was because we remained friends, chatted back and forth about GI issues, struggles and prayed for our girls and our families.  Maybe it was because they did everything right - accepting only the best care for Anna, clinging to their faith, marriage and family and tirelessly raising awareness and funds for Rett Syndrome.  Maybe it was because Anna struggled so much in her battle.  Or maybe because she was only 4 years old.  Or maybe it's because I wonder why their Anna was chosen to come home and not mine.

Gods ways are not our own.  There is so much suffering in this world and dealing with Rett Syndrome you move to the forefront of that suffering and helplessly watch it attack.  In a world filled with greif it's easy to see why people question God.  "If he's loving why does he allow all of this".  I don't know the answer but I do know that He promised that life would be hard, that we would have trouble, but to take heart, He has over come the world (John 16:33).  And that ALL things work together for GOOD for those who love and serve the Lord (Romans 8:28).  I hang on to these promises and they help to ease the sting of this life and this disease.

Little Anna is free.  There is no Rett Syndrome in heaven.  I imagine her with all of her sisters dancing on strong legs without braces and singing with the most beautiful voice imaginable.  She is home, she is filled with joy and there is no pain left in her body.  The ache comes from the family she left behind.  I can't even begin to imagine the pain, the vast empty hole that is left in their hearts that will never truly heal until the day they meet again.  I can only imagine how empty their arms feel, no parent should ever have to bury their child, but 4 years of hugs and kisses is scarcely enough time for all the love they have to share.

Anna's passing has made me put my own life in check.  Living with Rett Syndrome you certainly don't take much for granted, however, we can all get comfortable.  Too comfortable.  And you forget to praise God for 3 children that woke up this morning for the simple fact that they are all breathing.  After 5 months you forget to say "thank you" for another day without a seizure, it's just become the normal.  You forget that the cold your daughter had didn't just "run it's course" but it was God who healed her and spared her from the pneumonia she is so susceptible to.  And the surgery that she recovered from so quickly, well she had a great surgeon but it was God who steadied his hand.  Every ounce of every day should be spent in Thankfulness because even through the rough days we are covered by His grace.  And every chance we get we need to show others how much we love them, especially our children.  We never know when any of them will be called  home but when our girls get diagnosed with Rett Syndrome they automatically move closer to heavens gates.  We need to take the time to hug our kids, not just before bed but whenever they're within arms reach.  We need to kiss them and tell them what a treasured blessing they are.  To read them that extra story and lay down with them in their beds at night to just get a little more time in.  We should skip the dinner dishes and snuggle on the couch without worrying about bedtimes and schedules.  We need to drink our kids in and study every single inch, committing to memory their everything.  I will not allow myself to get comfortable again, lest another angel be taken from this earth too soon to show us once again how precious this life is.

God Bless the Gutierrez family who's lives are forever changed.  I pray that our Lord wraps you up in His healing arms and gives you the peace and comfort that surpasses all understanding.  We love you all and will never forget sweet Anna.  She has shown the world so much and we will continue to fight the Rett monster in honor of her.

Held - Natalie Grant from Comunidad Cristiana on Vimeo.


To learn more about Anna's story and a clip of her and  her family on "the View" click HERE

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.