My new role model

So I've been thinking that I'm going to make an effort to post more positive things on here and not just my current mood. I'm going to try. So here goes.

I have a new role model to look up to. I seriously didn't think that adults had role models but I do so just go with it. My new role model is this lady who I read about who I can't even remember her name. Some role model she is, you may be thinking but just wait and you'll find out why. Ok so here is her official story and blog http://addiandcassi.com/ but here's my totally unofficial quickie version. Addie and Cassi are twins born with this rare disorder that is called the Childhood Alzheimer's and its got a 100% fatality rate. Sucks huh? But wait. So this mom goes into SuperMom mode and starts her own research and finds out that the active ingredient in Frebreeze is a chemical that is given to her daughters in the right dose will keep them alive. Sounds crazy huh? So she goes to all these doctors trying to get a doc to inject her kids with Frebreeze. Finially she gets a doc to take her seriously and he tells her if she can get the FDA to approve of a case specific clinical trial he'll do it. So she learns how to submit the right papers and she files. They agree and poof! before you can say "so fresh and so clean" her girls are doing better! Now the problem is that these girls are getting injections multiple times a day and they can't keep this up because the Frebreeze needs to really be injected in their brains, so once again Mom gets these medicine injector pumps and is reconfiguring it to fit her kids' brains. She's a MOM, not like she used to be a genetic doctor and now she's a mom but a mom who loves her girls more than anything and had refused to just take the diagnosis and say ok. She is pouring herself into this, and this will not only help her kids but others, the rare kids who's lot in life is to have this death sentence placed upon them. No she is turning the medical world upside down because she isn't some fancy shamachy doctor or professor. She's a mom. A mom with stones. She made the gut wrenchingly tough decision to say well they are going to die if I don't try and if I do try they could die. I- I will try. Then she wouldn't take no for an answer. And that is who I want to be. I do not want to go gently into that good night. People say " well God gave Chloe to very special parents" and you know maybe they're right, maybe God gave us Chloe because He in His infinite wisdom knew that I would rage, rage against the dying of the light.

Sticky Notes from Heaven

Ok so lately I've been talking to God ALOT. Not in the ohhhh she prays twenty times a day and reads her Bible every hour kinda way. No lately it's been yelling at Him. Not the why me??? Yelling but the "God, I know You can heal her JUST DO IT!!!" yeah yeah I know yelling at God not a great idea but seriously I think it would be easier sometimes to deal with Rett Syndrome if I didn't wholehearted believe in a God that spoke the universe into existence. Because then I wouldnt have the knowledge that it's totally simple for Him to heal her. And please don't even try to tell me that crap about it is all for His glory, or but it will all work out for the best or anything like that because quite frankly my dear I don't give a damn. Anyways.... So I yell at God and I ask Him for stuff (conflicting I know but I figure what the hey) like a house my daughter can move around in that isn't making her sicker. Then I wait. Not like wait and do nothing but wait like ok God is this your answer or is this your answer? I need a sticky note from heaven.

Seriously. I just need one. I don't think it's to much to ask, I mean He wrote the 10 Commandments out for Moses and what did Moses do? He smashed them! Not me! God gives me a sticky note and that bad boy is going in my memory box FOREVER! But think about it. There is a house that is sooo perfect for us, just not on the market yet. There is another house that someone might be willing to GIVE us, only we have to have the house moved and it ain't a trailer. Is that what God wants? When I prayed about it before all I got from Him was Wait. Then this free house comes up. Is the wait for the free house? Or is it for the Extreme Makeover that a million people have said we should apply for? Is the wait just wait and He'll heal Chloe and we won't be so rushed to get into a house? See the need for a sticky note? I'm looking at everything and everyone thinking is this it, God? Maybe He had my sticky note all ready and then I yelled at Him and He smited the sticky note. Poor sticky. Grrrrr. Am I the only one to ever wish for a sticky note?

Yesterday was a good day

So Bobby wanted me to write this because apparently I've been all gloom and doomy. So....
Yesterday was GREAT!!! No sarcasm or anything. Chloe was more alert and more vocal than has been in a long time. She was so happy and content. She took a nap and afterwards she was a little groggy but she bounced back and pretty soon she was playing and laughing. I was tiding up and I heard this noise of the fluttering paper, and then a thump. I came into the living room and I see this little girl surrounded by all this mess. For a few milliseconds I was upset at the mess in the newly cleaned room,then I was taken back by the thought that one day, perhaps one day soon, she won't be able to make a mess. My heart was heavy but I tried to smile and really enjoy the moment. I waited till she moved on to make a mess with the socks before I cleaned it up and when I did it wasn't with the expelled air of maryterdoom that I usually have. I cleaned it up with a lightness of heart I hadn't felt in a long long time.

But the good times didn't stop there. Bobby got home and we got out the door in one not so fluid motion. She didn't sleep in the van on the way to therapy like she normally does, instead she laughed and clapped all the way there. Then in speech she was engaged, she was alert, she was making sounds that I had never heard before, she was imitating her therapist, I couldn't even taken it in, I was so enthralled. Our wonderful speech therapist wanted to try something new so she had me get the iPad and we used a customizable app and had Chloe touch a button with a picture of her cheerios on it. She would touch the picture and would give her a cheerio. It was great! To think that she was understanding it, and doing what we asked her... It was so exciting. Her therapy session is supposed to be only 30 mins long but because we're the last clients of the day she went over and it was almost an hour of wonderfulness! That night I didn't want her to go to sleep. I was scared that like Cinderella my ball and dress and coach would dissolve and I would go back to the reality I had before. I scoured my brain to see what I had done differently the night or something. I came up empty but this morning she was great! So yesterday was a great day! I want so badly to believe that she will only get better from her. I know it's not realistic but a girl can dream right??

Results and other news

Friday wasn't a great day, we got a call from the neurologist's office that Chloe's EEG was abnormal and that her brain is seizing. We have an appointment tomorrow morning at 10:15 to see talk to Dr. Pearlman. Bobby will be with us, praise the Lord. I have a few fears: one, the meds that are for seizures are no joke, with heavy citywide effects. I dont know if I'm comfortable with that. Two, I know that some of the meds could disqualify her from the Clinical Trial in Boston. I do not want to do ANY thing that would jeopardize that. Third, if we make the wrong decision she could die from a seizure, I have already lost my cousin from a sieizure so I'm acutely aware of the dangers. Fourth, the seizure activity in her brain means either that we have moved into the regression stage or we are about to move into the regression stage. That scares the ever livin crap out of me.

Which brings me to my next heart stopping fear, our house. We have a very nice man who's is a total stranger coming over to look at our house on Thursday. They are going to see if he and the church that is across the street can repair it enough so we can sell it. I'm totally excited and totally terrified at the same time. I'm excited because we need this sooooo badly,it will be a blessing to see Chloe in a house she can move around in, one where we know come what may, we can have her in our house her whole life with whatever medical equipment she may meed. I am terrified because this means that the house getting fixed to sell with be totally chaotic and stressful for her, a move, or several moves would be stressful on her and as I read I read over and over that stress isn't good for Rett girls, especially during her regression. We've already been told to expect catostrophic results when she regresses because she doesnt talk or walk on her own, she can't use a fork or help in dressing herself. I feel like every decision is life or death for her. I don't know.
I do know that the boys are acting out because of the time and energy we are spending with Chloe, no matter how hard I try to give them one on one attention its just not enough. My marriage has shifted into this odd dynamic that is totally unexpected. We have been together with the exception of a two year break, since I was 15. He's my best friend and knows me better than I know myself. But on August 30th life changed and I guess we did too. I'm engrossed in this new Rett world, trying to navigate our new life, with our new daughter. There's no one in our city that has a daughter with Retts,so it's Kinda hard to find someone who really relates. Meanwhile he says he feels neglected. I get that I do but keepers creepers, between the boys,housework, Chloe, filling out paperwork for medicaid and to get financial help for our house, and doing research on her seizures, laundry, etc.... Whew! Not to mention he wants to talk about the lasted blog or sermon or whatnot and that's great, but it's just not where I'm at right now. He's a wonderful husband, don't get me wrong. He is the best in the world. Just lately it's been more of a ships passing in the night kinda feel than a marriage. Hopefully this Friday will help that. We have a hot date! Lord willing and the creek don't rise I can get him to not crige every time he has to pay for something, he'll leave his cell at home and we'll have a wonderful time talking about totally dumb stuff, like what our favorite breed of cat is or something. You know, nothing that really requires a lot of thinking just convo that is light, engaging and nonimportant. It may seem like an odd wish but it's the mental time off that I really want. This whole thing has made me feel like I'm in that movie Crank and my whole life is spent on one adrenaline fueled crisis after another. Uneventful Dinner and a movie would be amazing. Then maybe he wouldnt feel neglected, I won't feel so alone, and the boys will see a mom and dad who are in it together not together in it.
So hopefully I'll have another update tomorrow. Prayers as always are greatly appreciated.

Yesterdays EEG visit

Yesterday was Chloe's second EEG. I wanted her to have either a 24 or 48 hour EEG done but the machines for that were out and so we got the one hour one done. It's not fun, for her or me. And it required two adults to get her there. One to drive and one to keep her awake. She had to be sleep deprived which means I had to be sleep deprived as well. Not fun. So they got us in and registered without any wait, then came the really fun part. They measure her head and stick like thirty leads on her head then wrap it with gauze and they stuck two to her ears and one on her heart. All the while she is telling us in no uncertain terms that she does not like the leads on her head, she's tired and she wants to go to her bed in her house. For a little girl who doesn't talk you would be amazed at how she communicated that to us LoL. Then after all that the lady just expected her to just drop right off to sleep. Ha! With all the crying she had caught her second wind. Once she calmed down and stopped protesting she decided it was play time. Great! So after over thirty mins of practically sitting in her to keep her still, ok not really but you know. She finally drifted off to dream land. They let her sleep for about 15 to 30 mins and they wanted to wake her up and shine strobe lights in her face. Not a happy camper. After all that she fell asleep in her aunts arms before we even reached the elevators and did not wakenup for four hours. Poor thing!
Ok so you want to know after all that, how did it go? I have no idea. I never did hear anything back from anyone all today. Tomorrow I start the phone calls and I'll update when I find out more. The only thought was man, I hope she gets used to this. If we get her in to the clinical trial in Boston, she will have an EEG done every 4 weeks for 40 weeks. But hey, praise God we have this technology and get to see what is going on in her little cute head. Until next time...

This is the first post I wrote after we found out....

A mother knows. A mother knows there is something wrong when she looks in the eyes of her newborn. She knows when her precious baby doesn't hit milestones or reach for her in the the "clingy" stage. A mother knows when her gut and instincts all scream "SOMETHING ISN"T RIGHT" And a mother knows when she would give all that she has to be wrong.




Today I got the call that ended the searching phase we have been in since roughly November 2010. I thought I had it all figured out. I thought that I had solved the puzzle. I didn't want to be right. I wasn't. I suppose I should have felt relieved. Some people start the searching phase and end up being in it for years. I didn't.

Rett Syndrome. two words that changed our lives forever. I had heard of it, once or twice I have scanned the symptoms only to quickly dismiss it. The outcome isn't good. But the blood test came back and it's Rett Syndrome. I honestly don't know much about it. I know more about it now than I did 24 hours ago though. Here's what I know, but seriously if you want to know more then I strongly urge you to go to http://www.nichd.nih.gov/ and look up Rett Syndrome.

It's rare: only 1 in every 10,000 to 25,000 live births result in a Rett Syndrome birth
It only affects girls with I think 2 exceptions ever. the reason is long and technical and has to do with X and Y chromosomes.
Unlike Angelman Syndrome which affects the chromosomes, Rett affects a single gene.
Rett Syndrome isn't degenerative but it is regressive. (I'm still fuzzy on the difference)
Rett Syndrome will eventually take my baby's ability to walk and crawl away.
She may learn to talk eventually but even that will be taken from her.
There are 4 phases of progression with Rett Syndrome
Early Onset Phase- she will stop developing
Rapid Destructive Phase-she will lose or regress learned skills quickly,* this phase is the hardest to swallow. It breaks my heart over and over* Purposeful hand movement and speech are the first to be lost......
Plateau Phase- regression slows. Seizures and movement problems are common in this stage. and most girls spend the majority of their time here
Late Motor Deterioration Phase- girls with either become stiff or lose muscle tome and some become immobile.


The reality of this is washing over me in waves of grief. Our life will never be the same. We are thinking about the future and trying not to be scared but we know that we need a house that is more open and handicap accessible. We will need a van that is modified to help us. And we need a communication device so we can communicate with Chloe. the list could go on and on. For now I will just have to take sleep. I will write again sooner than last time.

Our battle: genetics vs. faith

(I'm re-posting this here at Chloe's Voice because this is where it belongs and at the time of it's posting at my other blog - Deconstructing Neverland - this blog didn't exist.  So you may have seen this before but for those of you who haven't this blog was written exactly a week after we received the diagnosis)

Some know, some don't about our daughter.  We've been through highs and lows waiting for a definitive answer on what type of disorder she has.  Now we have an answer.  I wish I could say I was happy about it but I'm not.  Actually it is by far the worst news I have ever received.  Chloe has Rett's Syndrome and we have a serious challenge to our faith.  Google it and you'll understand why.

At this point I think I would rather change places with Job.  At least God took everything away from Him quickly.  We get to watch our daughter slowly debilitate and hope against hope that the next seizure doesn't take her last breath.  We get to be the family everyone talks about when they get home from Wal-Mart with the uncontrollable kid who screams, bites and kicks.  We get to do what no one else wants to do, not because we're strong enough or able enough but because we have no choice.

This is one of those situations where we find ourselves helpless yet hopeful.  There is no cure, no medication and no treatment for Rett's.  Even so, we are still hopeful that God would give her grace to overcome and us grace to endure.  I'm certain we will learn more from Chloe than words could express if she had them.  I already see Christ working to reveal His strength through her weakness.

Neverland is being deconstructed for sure.  Bit by bit, piece by painful piece we are being broken down to the place where we only have Christ.  It hurts, we cry and wonder why but He is still nearer than the air we breath.  Holding us, comforting us and crying with us.  He cries with us even though He can see the end from the beginning.  He hurts with us even though He already knows how it will work together for good.

It would take a mighty God to work all of this together for good and we have the ALL Mighty as our advocate and provider.  We expect nothing less than a miriacle that will make the world stop and recognize His glory and power.  We expect these great and marvelous things not because we deserve it but because He is faithful and desires to prove it through us.  So, with Christ, Paul and the countless saints before us and beside us we rejoice in our trials for the upward call and the fame of the name of our Lord and Savior Jesus Christ.  His mercies never cease.

The journey of a thousand steps.....

I (Jessica) would just like to say thank you for stopping by and reading about our journey. The road we are on is the road less traveled. It's hard and long, but in the end, our little girl with no voice will speak to your heart and teach you things you never knew about yourself and the world around you.

Today is the first day of the rest of your life

This is the first post in an effort to record the ups and downs of our experience with our very special little girl, Chloe.  Jessica and I (Bobby) will both be posting to this blog as we have things to share regarding our battle with Rett Syndrome and how it affects our lives.  Occasionally we will share specific ways you can pray for us and offer other help in an effort to give our daughter the very best provisions for a healthy, happy life.

With Rett's, there are four stages that the average girl goes through.  In the first stage she develops normally and hits all her milestones.  Then comes the second, regression stage in which she loses her ability to walk, talk, and perform normal motor functions.  Chloe is atypical (nontypical) and so far, not in a good way.  Chloe hasn't hit any milestones on time like crawling, walking, talking and feeding herself.  She has the handwashing, wringing, clapping patterns of debilitated motor function and the regular frustrated screams that would come at a later stage with a typical Rett's case.  When we first learned that Chloe has Rett's, we were pretty discouraged knowing that she was already so far behind and faced regression in the future.

Even so we have much hope for Chloe's progression.  Recently a local church donated an Ipad2 to help Chloe learn basic cause and effect and eventually it will serve as a communication and learning tool.  It would have taken our family a long time to save up enough money for this piece of equipment and in that time we would have missed a crucial window in which to take advantage of Chole's functioning before the regression sets in. Thanks to the generous gift of our community we can begin working with her now in order to help her function as much as she can before the regression phase comes.  It is really a dream come true.  In the same way we will serve through this blog in sharing Chloe's story with the world, the Ipad may very well be her voice to us in the future.

We are learning so much about Rett Syndrome.  Jess is completely consumed with books, medical journals, websites and other literature on the subject.  She is working so hard.  I have been a bit flighty during this time, not really wanting to face the reality of our future together.  I created this blog today as a first step in the direction of using my time more wisely to face this thing head on.  Chloe is worth all my spare time and more devoted to understanding her disorder as best as I can and working to prepare for the future and all of the ways we will need to meet her special needs.

This blog will be our outlet to document and share with you all how the family is doing.  Hopefully it will also serve as a source of hope for other families that are facing a future with Rett's.