Monday, January 31, 2011

The Dreaded S Word.


There are things that come hand in hand with Rett syndrome. Seizures,breathing problems,sleep disturbances,GI issues and Gtubes. Until last night at 11pm Seizures were something the horrible Rett Monster had spared her from.

We never spoke of the S word. When it did come up we knocked on wood. Every single time.
Last night at 11pm I went into her room and she was in mid seizure. She was in the fetal position,stiff but shaking with her eyes rolled up in her head. She was making this low gurgling/choking sound. I can't even explain my complete heartbreak when I found her. I put my hand on her and told her I was there and called for my son who then went and woke her father. When he came in she was coming out of it. She was trembling and looked dazed and confused.

I was an absolute mess. Until last night I had thought that I had lost the ability to cry. Not an all cried out thing but a medicated thing. I don't get overly emotional. I don't shed tears,even at the most touching of moments. All that went out the window when I was laying on her floor screaming and bawling my eyes out.

I got kicked out of the room. I was furious but knew it was necessary. Rettgirls feed off of their Mommy's and I didn't want her to get upset or go into another one so I cried on the floor in the hallway outside her room until her father came out and told me she was settled. I peeked in and saw her licking her hands and watching her Wiggles.

We immediately texted the Neuro and waited for a response. After a few minutes we talked about weather or not we should take her to the hospital. We decided pretty quickly that the answer was no unless she had another one. I was in no condition and neither was she to go sit in an ER for the rest of the night to have a doctor come in and tell us she has Rett Syndrome. No SH** Sherlock.

I think I finally fell asleep around 4 am and the phone rang at 6am from the Neuro. She is so awesome and so reassuring. We know that this could very well be the start of seizures that come with Rett Syndrome but we are hopeful that it is an isolated case. There are quite a few girls with Rett Syndrome that only have them when they are sick or when a bug is coming on or wearing off. She was sick week before last and I did leave her for 3 days for the first time while I was in New York. It could have very well been that something got missed somewhere. Let's all hope and pray that this is the case.

Thank you to everyone who called,texted and emailed. I really appreciate it.


New York Pics again. Hopefully more soon

When we arrived. We were so nervous and excited at the same time and just wanted to get to Stef and Manny
Theses are going in the scrapbook

During the Comedian warmup. It was actually pretty fun. Did I mention Ingrid is a dancing machine! Seriously. My mouth was on the floor!

Monica and Elizabeth

The beginning of the 20 inches of snow we tracked in all day

Girl of the hour. Miss Anna Banana!

So so proud of them!

Awww. Sherri was so super nice!

RSRT and GirlPower staff with the G fam,Jesse and Sherri

Ingrid and Kel after the taping. I was in the hallway with Anna and Whoppi
I love this woman!
Ingrid singing to Anna
Seriously. That is alot of snow!!!!
My love, my life after I got home and she saw me!

Sunday, January 30, 2011

The View part 2

Hello all.
I know everyone is wondering..who,what,how,why? Those questions are simple. The pictures below tell everything. We live,breath,eat and occasionally sleep Rett Syndrome. Our daughters are our hearts,our souls and everything we are. We raise money and spread awareness with every breath and every thought. We do nothing but take care of our girls and each other.
Rett Syndrome has not gotten this kind of media attention...ever. At least not since Julia Roberts was the spokeswoman a decade ago. Our girls...their fight has never had a whole segment. It happened very fast..the decision anyway but the fight to get it on air has been ongoing for a very long time.
We thank God for Manny and Stefanie having the connections to get us there. We are eternally grateful.
We were there because Stef and Manny needed us to be. We were there for our daughters and for their daily fight. We were there because this family was accomplishing something greater than anything we've been able to do with all our might and there was no way we were not going to be a part of it. We were there because we have the absolute honor of knowing and loving this family...

Love ALL these girls and women so much. In case you missed it or live in a part of the world that doesn't have it here it is....The GFam bringing Rett Awareness to the WORLD!

Saturday, January 29, 2011

How can you help?

As you watch and discuss The View over the next few days, please consider donating $10 to research
by texting the word RETT to 20222. It's that easy.
And, afterwards you can share your comments and questions on the RSRT blog at
You can also donate anytime on the right sidebar of this page by clicking on donate to research.
Thank you all so much!

Friday, January 28, 2011

The View-by Stefanie

This is a repost of the blog my girl Stefanie posted after we taped their segment on the view and I wanted to share it with all of you. More pictures to come.

Rett Syndrome on The View
Manny, me, Anna, and Monica Coenraads of the Rett Syndrome Research Trust taped our segment about Rett Syndrome on THE VIEW today! It will air this Friday, Jan. 28, at 11 a.m. The teaser at the start of the show is a beautiful tribute to Manny and his work there, as well as our Anna Banana. Our segment is right after the fashion show segment, I am guessing around 11:30/40.
The producer that produced our segment, Rachel, was fantastic, and has been working on putting this on the show since Manny first approached her with the idea. We kept most of it under wraps for so long because... Well, to be honest, I kept pinching myself because I couldn't believe this was all happening. The last thing we wanted was to disappoint. We needed to accomplish the first task, which was to represent Rett the right way, and second, to share our story, and third, to raise awareness. The cherry on top is to be able to share with the masses that our cure is close!
Manny spearheaded this and because of his dedication, really brought the first national spotlight to Rett Syndrome, ever. Facebook is already aflutter with the Rett community, spreading the word for people to "set your DVR's!" and it is all so very surreal.
I can't wait for you all to see it on Friday!

The hosts were so gracious, and so personable, that sitting on the couch was not near as daunting! We were so ready to share "the Rett story." If someone would have told me that within Anna's first year of her diagnosis we'd be on national television raising awareness and reaching such a vast audience, I would have never believed it. I am so proud of Manny... And I am so very proud of Anna.

After the taping, Anna wanted nothing more but to get out of her dress and into her comfy shirt and leggings. It was a hard day for Anna, who handled the craziness like a champ, but nevertheless she was off of her schedule and out of her comfort zone. I can't tell you how many people came to the guest room after the taping to say hello and meet our rockstar, Anna.

Ingrid, Sherry, Terri, Kelly, Monica, Jesse, Manny, me and Anna
A tremendous blessing (as if this weren't enough!) was when we found out that Ingrid Harding, co-founder of RSRT and founder of Girl Power 2 Cure, and fellow Rett mama and friend (so many titles!), could come for the taping, as well as Terri, of GP2C and friend, and Kelly, of GP2C and friend. These women are amazing. No better description. Amazing.

Girl Power!
After the show, we headed over to Peter Hurley's studios for a photo shoot and to have some fun! Peter and Ingrid have been friends since they were 7, and when she told him she was coming to New York for a visit, where he now works and lives, he asked her to bring her friends over and take some photos. It was a blast!
This may be the cheesiest line I have ever written, but, today, my cup runneth over.

Monday, January 24, 2011

It's ok. Kinda. ok not

I guess it wasn't really fair for those that keep up with Abby and myself to post such a vague stay tuned like I did the other day. I have received many emails.

In the Rett world...a place I dont want to live in anymore, we Moms have what we comically refer to as quarterly breakdowns. Everything is one step forward, 3 or 4 back.

I think after the high of New York and everything we learned there then coming home...and she still has Rett Syndrome. Every day. It never goes away. I advocate all day long every single day..and she still can't talk. She is still weak. She still can't breath right. 4 years ago they promised our cure. 4 short months after her diagnosis when I was still in the throws of the greatest pain in my life we had good news. They were gonna fix her.....4 years later and I am raising a 6 year old toddler.

I am exhausted. EXHAUSTED! Not just physically. I am mentally and spiritually losing it. I had a friend tell me the other day that she missed Terri. She told me that every time there is a set back or a disappointment that part of me goes away and that's she's afraid that some time soon there wont be any of me left in there. Just a smiling robot that gives meds and changes diapers. It was a blow. A hard one to take. Cause it's true. And she is one of the few people in the world brave enough to tell me stuff like that.

I just feel like I have to do something! But I dont know what. 3 years without a car is about half of it. I am stuck in this house...buttwiping robot that I am. I dont get out for anything and the last few weeks I cant even go to church because Abby's Dad has our only vehicle and is on call in winter weather.

I found out in some states they have what's called an income waiver for Medicaid. Those would be the states more concerned with childrens health than building bridges in the same place every few years. Or giving themselves raises and driving Bentleys. If I could find proper care and proper work hours I could take care of my family again. I spent too many years as a HR and Office manager to be a diaper manager. It's boring and slow and I spend 9 hours a day without her. I should be able to work.

Our housing situation is needing a change. I dont like change. After the end of an average day it is back breaking for me to carry her upstairs to the bath and then to bed. I just wanna lay on her floor when I'm done. Seriously we need a one floor house or duplex. Cant stand to have people above me. Considering we barely get by on the cheap rent we pay now I see no way to rectify it and it frustrates me. Another thing I cant fix. We pay 600 a month with gas,water and trash paid. How in the world could we find something like that?

Seriously, anyone know?

I have other emotional things going on that I cant share. Things I need to get me head and heart around. My son will graduate and leave soon...ok he says he's leaving. Who can blame him? But there's more

At some point I need to MAKE things get better...I just dont know how,where to start. Not just Abby but our whole way of life needs to change and I may need to hurt people to make that happen and I cant bear it. Yelling ,screaming and stomping my feet for years has gotten me no where. Action needs to come soon...or the lottery...or a miracle..or to find out this was just a really really long really bad dream.

Friday, January 21, 2011

11 days

Wow 11 days. That's how long it has been since I posted a blog.

Alot has been going on here and sitting down to update or let it out has not really been possible.

When I find myself being really down I try not to blog because I hate reading it later. I want to be a positive person.

So for now I'm going to leave it at that....

Please check back on occasion. I hope to be able to keep up sometime next week.

Take Care


Monday, January 10, 2011


One thing we as Rett parents scream about the most is that our girls are trapped in there. In little bodies that don't work. We spend the majority of our time trying to convince the world of it. In between sleepless nights,diaper changing,baths,wrestling with providing care for a child that can do nothing for herself. It is a 24 hour a day thankless,payless job.

Seriously, no one ever says thank you or hands you a paycheck. Vacation? Nada. Benefits? That's funny. The only benefit I have is looking into my own eyes each day at a person who sees me as her world. The love that comes from that is unexplainable and worth more than any paycheck. Although a paycheck would be nice.

In most cases RettMoms are not just everything to that one little child. We are also Moms to other children..although less than we were before. A guilt we have to live with..hoping that one day they will understand and forgive. We are wives..although I personally suck at that time. We are friends and confidants to other parents that we do not know. For those few of us that actually get to meet there is an instant bond...barring the occasional weirdo. Everyone knows someone who is a strange one. Rettland is not immune. In fact I'm kind of sure that we're all just a bit loony..some of us just choose to take their lunacy to an all new extreme. You know who you are.:)~

In those few moments each day where I am not elbow high in meds,feeding bags and other peoples feces I make an attempt to make a difference. I think out of that need to fix it and knowing I cant I reach out and support other families. The only thing I can do is try to make someone else feel better. Weather it be words on a blog, phone calls in the middle of the night from a Mom who is losing it or giving advice to those who have nowhere to go and no idea where to begin. It is my therapy and my reward in a world I have no control over.

Trapped? Yes. Rett Syndrome has trapped my whole world. It trapped my daughter in a world she can't escape from. It took away my ability to provide for my family..although the Government and insurance helps with that. Not by actually helping but by having rules about pre-existing conditions and outrageous rates for those who have them. The Government is nice enough to give her Medicaid. Although it comes with rules like..we can only own one car, For every dollar we make over our standard income they take away 50 cents from Abby's benefit amount. Once that amount is taken to 0.00 they take her Medicaid. So I could leave the house and work.Providing I could find a job that would let me leave 4-5 times a week for the whole day or at least half of it. Then of course if they paid me then that would take away the one thing that feeds her,medicates her, pays for her equipment rental and her diapers. I suppose I could work for free if they would give me insurance,,kind of what I'm doing now but I would be doing it without being able to care for her. Trapped.

This week has worn me down. The Scoliosis,The fight with the school over therapies and providing eye gaze options for her. The tears nightly over why the school doesn't have to provide any more therapy than will what will enable her to manipulate her environment...that fight is just uncalled for. God forbid we try to make this fragile little child stronger or more able. Lets just do the minimum to collect our paychecks. Who gives a crap about the kids?

The last few days, OK 5 or 6 days Abby has been having some severe GI issues as far as pain go. She screams and bites herself. She pulls my hair and bites me. I have to comfort her to sleep with my arm stroking her but my head far enough away to keep from getting attacked. I am weary. I am exhausted. I am trapped.

Wednesday, January 5, 2011

Rett Syndrome SUCKS!

And so does everything that comes with it.

I have been talking to other Rettmoms the last few days because if nothing else,all we have is each other. They are the only ones who get it.

It seems like every single time things start to look up Rett Syndrome rears it's ugly head and presents itself again. With force. If it was a physical thing I could grab a hold of I would so kick it's ass from here to the year 3000.

I know most people who know our situation know that Rett robbed us of all our hopes and dreams for our daughter. It took away her speech, her ability to move on her own and a slew of other things. I am going to borrow from another Mom to give you a little idea of what Abby deals with and some of what Rett Syndrome has given her. It is so much more than just the loss of speech and motor function. Because of Rett Syndrome Abby now deals with:

screaming fits and panic attacks
inconsolable crying
non verbal
coordination problems
infant like walk and gait with interrupted periods of backward walking
Wears Afo's or braces on her feet
difficulty swallowing
needs feeding tube for hydration and nutrition
microcephaly (small head)
teeth grinding
spastic hand movements
poor sleep,sleep disturbances,night terrors
GI issues (poor weight gain, constipation, reflux, etc.)

That's alot of stuff for a little girl.

So here's my latest rant.....

Abby has scoliosis. Sucks I know. When we first discovered it she was at a 15 degree s curve affecting lumbars 1-4. We got a high as 20 degrees but after many therapies went down to 17 degrees. In April we went to the Ortho and got the,"Well you know Scoliosis comes with Rett Syndrome speech. FREAKEN hate hate that one. What I hear is,' tough shit sucks for you' whenever anyone says that. The doc then told us that if it got above 25% he would do what is called Vertebral Body Stapling. He explained that they would basically go in and put 2 staples next to the curve which would force her spine to grow straight as she grows.

On Monday we went back in for our 9 month check up. I sat there in the waiting room then in the clinic room for an hour each before they came in and had us go do x-rays. We did them and I was just so sure he was gonna tell me that she was down to 15 degrees or maybe even less. He came in and said she was at 34 Degrees. 34? What? Room was spinning. Tears flowing...Rett Speech babbling...

He started talking rods. I asked about the stapling. He looked at me like I was crazy and said he doesn't do that on children this young and that it is experimental. He sat there showing me xrays. Im not an expert but I just dont think they are accurate. She is obviously sitting on her right buttcheek, her head is moving and her hips look way out of whack. How can they look at that and compare it to the last one?

Oh man I felt like I was gonna throw up. He kept talking rods. I asked him if she would be able to bend and walk and play and he said there was no guarantee. I am just sick. They have to be wrong right?

So I get home and find the last xrays and sitting right there signed by this doctor is a release form telling me to look up and research the body stapling for over 25 percent signed in April!

So here's the x-rays. Am I crazy?

April 10

Jan 11

Saturday, January 1, 2011

Happy New Year. Im back

Hello all.

The last month has been absolute insanity around here.

We had our trip to New York. I made new friends. I got to see my girl Kelley twice in a month and 3 times this fall after not seeing her for 20 years. So glad to have her back in my life.

I opened up a new can of worms at school since we learned that Abby can use an eye gaze device. A fight I dread but know I must do for her. We have another IEP meeting this next week due to my pain in the buttness..another thing I dread. The thought of sitting in a room full of people rolling their eyes at me while they feel so sad and think I am so pathetic for thinking my daughter is in there makes my heart ache and my stomach turn.

I don't know why I can't get it across to them. I know she is disabled. I know she is language impaired (Thanks for that one Ingrid.) I, in no way, think I have a Steven Hawkins in there. I do know I have a 6 year old little girl who is trapped in a body who's brain doesn't tell her body how or when to move. The spark doesn't fire. Doesn't mean the ignition isn't there. She has the starter. It just won't turn over and run the rest of her.

They know she looks at the answers. They know she makes choices with her eyes but insist she choose with her hands. Little twisted hands that cannot grasp or point. I don't know how to make them understand that she wants those little hands to work. That she still needs the therapy to try to get her brain to fire to her body. Weather or not it will ever work is any ones guess. She still needs the therapy to get those Neurons firing. We do however, need to give her tools she can use now. Just because she has no physical voice does not mean she cannot or does not have the right to communicate.

I think they only see the child who stares into their eyes...searching. Wondering why they can't hear what she is saying. She can hear it in her head. Why can't they?

They see a child who is clumbsy and tires easily. They see a child who is 6 years old and still walks like an infant who is taking her first steps. Sometimes I feel like I can jump up and down and scream and rant...and nobody hears me either. I can't imagine how it must be for our girls with Rett Syndrome.

Pray for us with this one. It hurts.

We had an incredible Christmas. Incredible. My children are spoiled and loved and we are so grateful.

On December 23rd Abby took unassisted steps. Since her g-tube surgery in 09 her walking skills have all but vanished. She will take a few back and forth steps within reach of her bench but nothing much outside of that. You have to hold her hand or sometimes her hand and her back and she will sometimes take you down with her. She seems more sure of herself. On the 23rd I had sat her on the couch because I was busy and quite frankly getting a little irritated with her neediness...don't don't live here. I took 3 steps away and bent over to pick up a toy and had her face in my butt. She had stood up off the couch and walked to me. Oh man. Incredible.

The next day I put her on the couch as I was preparing for Santa and grabbed the camera.......