Go team!

Sometimes in my world of poor me, why me and general selfish boo hooness I forget how fortunate we really are. And as always, she finds a way to remind me.

This morning we were going through all the pictures people are posting from the Disney Half Marathon and surrounding races. Families, friends,siblings and complete strangers running on behalf of our girls. A complete stranger running in my own daughters name. For years the majority if not all of the money raised for research and awareness for our girls has come from their families. Strangers and the public taking a stand and getting involved is something of great relief for all of us.

We were talking about the great costumes, I must have a tutu and a cape....for starters. It was so fun to virtually cheer them on, covered in their GP2C gear. I started feeling it yesterday. I must be there next year. Will I run? Probably not but I will run in my heart and I will fundraise for Team Abby. I will encourage local and others to run in our name. But I will somehow challenge myself.

Looking through it all Abby was getting excited. She started to rock and verbalize, almost never words but sounds and shrieks. We had Dora the Explorer going on in the background, of course.We saw a pic of a girl with her family helping her across the line. I'm almost sure her mother had finished and then grabbed her so she could cross, but it was so moving. I literally just blew snot on the screen telling you about it.

That's when I heard it. Abby was rocking and woo woo wooing and there was a bully episode on Dora and the character said, "Roll away. " Abby shrieked "Row Away!" then turned to me and shrieked.
Big deal huh? It is. For the majority of our girls there is so sound short of a whimper when in pain.

We are lucky when it comes to Rett Syndrome. No, my daughter can't get up from a chair or couch on her own but I know a beautiful girl her age who is just now sitting up on her own.  Like most girls a giggle or a whimper is all you get. . No my Abby can't talk but she does. I'm sure of it. In her mind and every once in a while it comes screaming out. When those times come I am reminded that she is trapped, she is there and I need to fight for her more.

I do get fed up and I have times where I just want to live and accept our fate. I don't want to scream Rett from the rooftops 24 hours a day. I just want to be her Mom. It's time for another round and I'm ready to fight.

Roll away Rett roll away.

The half marathon is tomorrow but there have been races and events leading up to. I will leave you with pictures but I am going to lace up my shoes and get in shape.

Ding Ding!

 Ingrid. Founder of Girl Power 2 Cure and one Bad A## Superhero herself!

 This is what it's all about!

 See that girl on top? The first one? Thats mine!

 Rockin it!

 There was a time that I would have been in the middle of a pic like this. Cept I would have been rocking a tierra! Come on ladies!

 This is why

Go team go!

 Being the best sister ever!

 Spread the word!

 Amazing!

 Go team!

This is what love looks like!                                                                                                                                                                  

To learn more about Girl Power 2 Cure click here GP2C

To purchase items you see in this blog click here GP2C STORE

To donate or get involved click here GP2C Get Involved!

***If you are a runner or want to be and are interested in participating next year on Team Abby please contact me at terri.vejrosta@gmail.com

Abby can danceydance!

Last night Abby was on a roll. She was dancing and giggling and likes she does, she wanted me to sing every song and dance with her. I sat down next to the tv so she could still watch and her nurse got this video. So honored that I get to live in HER world where everything is Happy and she is surrounded by nothing but joy and love.

New research funding puts Rett Syndrome cure on the horizon | Business Standard

I woke up this am to find the most amazing news. We are on our way...and as we sometimes forget....there is hope.



Researchers from Scotland and the US are taking a step towards reversing the effects of Rett Syndrome, a debilitating genetic disease affecting very young children in large numbers worldwide. 

Scientists from the University of Glasgow have been awarded USD 1.6 million to work together with three research institutes in the US to develop treatments for Rett Syndrome, a profoundly disabling condition that has commonalities with autism spectrum disorders. 

The grant, from the Rett Syndrome Research Trust (RSRT), will build an international consortium of researchers who will expand the breadth and depth of high-impact gene therapy research into the disease. 

This is the first research group in the world specialising in gene therapy to combat the disease. This consortium will build on recent research breakthroughs that have successfully used gene therapy to reverse the progress of the disease in mice. 

Future research will concentrate on developing similar treatments for clinical trials in humans. 

Rett Syndrome is caused by a mutation in the MECP2 gene that leads to numerous devastating symptoms, some of which worsen over time. 

It predominantly affects girls and causes severe regression in early childhood robbing children of the ability to speak, move normally and use their hands. 

The disease also causes disordered breathing, tremors, severe anxiety and emotional disturbances, seizures, and digestive, circulatory and orthopaedic problems. 

Although most children survive to adulthood they require total round-the-clock care for the duration of their lives. Researchers will target the underlying cause of the illness using gene therapy. 

They eventually hope to develop treatments capable of reversing or preventing the symptoms of the disease meaning that sufferers will be able to lead relatively normal lives. 

........

read entire article and fascinating news for our girls below



New research funding puts Rett Syndrome cure on the horizon | Business Standard

When she's sick she's better

Abby has Pneumonia so why the weird title?

I wish I could show you on video but as with everything Rett, on command isn't really a possibility.

Abby woke up 3 days ago in the middle of the night with a fever of over 103. She was coughing and had that wheezing bark that no parent wants to hear.

I immediately left a voice mail on the Peds line. I had her at the office and on antibiotics within a few hours (Now if only I would take that good care of myself)

The last few days she has been coughy and gaggy and feverish.

I was looking at her this morning when she was talking to her Dad. Anyone that knows Abby knows that her speech sounds like a Native rain dance. " Woo woo woo woo....woo woo woo woo."

This morning at the same moment I thought wow she has really been trying to talk lately.....I realized lately had just been the last few days. What is coming out of her isn't English or intelligible but it's something.

Instead of looking at us when her show ends then looking at the remote she is turning, cocking her head, and speaking in what sounds like speech. it just sounds like another language. It sounds like questions. It sounds like statements.

At that moment this morning, as soon as I had that wow moment, I had that gutted moment of realizing it would end with this illness.

Within a year or so of Abby's change when she was a toddler I told the doc I thought she was getting better and it was weird cause she was sick and had a temp and a cough. He asked what meds we were giving and how long she had the temp. He then told me what most medical professionals know but most laymen don't. For some reason kids on the spectrum or are developmentally delayed have flashes of sparking...or where things click when they usually don't. And when they were on a specific cough medicine it seemed to be even more so. It was the one she was on.

Abby doesn't get sick very often so this time I forgot...again. But I am going to enjoy the hell out of it today, and maybe tomorrow. Until Rett comes back and takes it away again.

She's so in there today. Id give anything for the key or the ability to kick that effing door down and get her back...while the monster is sleeping.

A Change in Abby. (Take that, Rett Syndrome!)

There has been a change in Abby lately that I have been amazed by. It kind of snuck up on us and every day she surprises us a little bit more.

As per usual it takes me a bit to realize when something is going on and that it could just be a combination of things. It took standing in a hallway talking to one of her docs and saying it out loud to realize that Abby is improving.

A few months ago we started Abby on a blenderized diet. Her Ped had suggested trying to feed her. I listened and agreed out of courtesy but really had no plans to be covered in rice cereal, carrots and applesauce again. Ive tried for years. She can't chew and swallow and call me a bad Mom if you will but I cant take 2 hours to feed her a cup of food, half of which I will wear.

A few other Moms I knew were giving their girls blenderized food. Being the ever loyal pessimist I was pretty sure that wouldn't work and rolled my eyes at it. A few days passed and I thought id give it a shot. I spent weeks just putting some rice cereal in with her formula then adding one food item at a time, kind of when you are trying to start feeding an infant. Abby's tummy is so delicate I didn't want to throw her into shock.

About the time I started the blended diet, one of the doctors at Abby's Chiropractor gave us a super duper green tea antioxidant supplement and swore by it. I have to admit I kind of inwardly rolled my eyes at him too. Its Rett Syndrome. Nothing helps Dammit. It took a few weeks for me to go ahead and throw that supplement in the blender. Once I saw it didn't make her sick it just became part of the routine.

This past week he asked me how she was doing overall. He also works with Special Needs Kiddos at a learning center and has taken a special interest in Abby. I told him how she is trying to crawl. This child hasn't had enough strength to hold herself up on her hands and knees since before Rett Syndrome hit. But the one thing Ive noticed is an overall increase in awareness and we are getting words.

I think he thought I was nuts. I told him how Abby has always babbled and hummed and how we might get A Dowa during Dora the Explorer or an Uma for me if she is trying to get my attention or is upset but we are getting clear Dora's, she is saying go, hi, bye, love, love you, I big..and so on. He was so cute when he stood there and teared up.

On the way out the door about a half hour later the lovely woman at the desk stood up and said," Bye Abby," like she always does. We paused at the door and I said,"You tell her bye," I wasn't really expecting Abby to perform on command. She then yelled out,"Bye!" and threw an arm towards her. To say that office jumped and squealed would be an understatement.

In just a few days since then everyone that comes in is greeted with a ,"Hi."

When her shows end she says,"More Dora Maaam."

I have graduated from Uma to Maaam! Yes I realize there is an extra A in there. Thats because it's definitely a Maaam!

Last night when I tucked her in she was furious about something...As I left the room she yelled,"Maaam! More!"

Now I don't know what she wanted but she was trying. Her Pistons are firing. We don't have a cure. She still has Rett Syndrome but my almost 9 year old daughter is getting words and answering and expressing her opinion as best she can.

I fully believe her new diet and the addition of this supplement have been our answer to the changes in her.

For those interested in trying a blenderized diet I started by going to

Blenderized food for tubies on Facebook

and

Food For Tubies

If you are interested in trying the LifeVantage Protandim antioxidant supplement you cant find out more and order by clicking the link below:

Protandim

___________________________________________________________________________________
Disclaimer:
I am just a Mom. Not a medical expert. I am only giving my observations on our personal lives and have not been asked to nor will I receive any monetary compensation for any of my recommendations on this blog.
Please consult a doctor before trying anything new with your Special Needs Kiddo's

Sometimes I forget

Sometimes I forget that Abby has something "wrong" with her. Lately its been easy to just accept her as her and our life for what it is. Without realizing it consciously I have hunkered down into our safety zone. Finding excuses not to mingle with the outside world. Sometimes I even get Panic Attacky anxious about having to do so.
We still go to our appointments...only four this week. But we don't do anything else. We have been going to see my Aunt and Grandmother but other that that there are no stores, restaurants, movies, play dates.

Today I wondered about all the reasons we don't....until we were walking out of a feeding clinic this am and I just had this whole sense of what we must look like and our surroundings and it was hard to swallow as I panted in the van trying to catch my breath and keep from passing out once we reached the parking lot.

When I can help it I walk Abby in and out of therapies and appointments. Its hard on my body but I do realize she doesn't want to be in that chair and she doesn't get the exercise a typical kid gets just by being a kid. Walking Abby is difficult. Picture trying to walk the Tasmanian Devil in and out of hospitals and clinics. She is babbling loud and incoherently. She is spinning,dropping,penguin crab walking, Leaning,stopping or falling backwards to look at the sky. Its hard on me and I hurt all the time but I do it. Her hanging on to anything that resembles normal. Anything that she CAN do no thanks to Rett is much more important that my aches and pains. So many children with Rett Syndrome cannot walk and I know we are blessed. I will not take it for granted.

The hospital was busy this am. Its not a thing that we Special Needs Moms talk about but we don't make eye contact with other people. Not you Normies anyway. We would rather focus on our children and the best way to get from here to there than see you staring with your mouths dropped open. We don't want to see you grab your child and get them out of our way. Not as a courtesy but like you are afraid we are going to get some on ya or like you are shielding your child from having to see something horrible. I did get one pity smile from a woman sitting alone. I didn't smile back. I just focused on the door. A little mad at myself that I had let my guard down for that 30 seconds. I know better.

I also know what me must look and sound like. I do understand the open mouths gape. The Holy crap what the hell is up with that kid look on your face. I get it. I don't know and cant say how I would of reacted if we had not been thrown into this nightmare. Sitting wherever while a girl makes the weirdest noises. You turn your head and she is beautiful. Smiling at her mother like she hung the sun, moon and stars. Thinking its so sweet the way her mother holds her hands. Then there is the shock as she starts to rock back and forth. What the hell? She's humming loudly. Almost like a chant. Boogah woogah lakka ummagah nah. Over and over and over. Occasionally a hand will get away and pull her mothers hair or slaps her in the face. Wow she is really loud. OMG her Mom just let go and she walked, stepped fell to the right like she was in a room where the floor tilted only for her. But she looks so normal. Oh no she's drooling...and so are you at this point.

We do understand. We don't like it but we do. At least I do. I just don't want to see it.and I dont want it to be us. Your reactions kill me. As kids we were told not to stare and we didn't. The only time we saw someone in a wheelchair was if they were a Veteran. You could explain a Veteran to a child. You didn't see the kids at school. Hell we didn't even know they were there. It seems weird to me that there were always disabilities yet I remained completely unaware until I was grown. Where were these kids? Was it easier to hide them away or keep them at home?

Yes

Today in the world of political correctness we can now live the lives of normal people right along side the rest of you. But just so we wont sue. Most of us don't.

Why?

Its not you completely....although Id love to have some one or some thing to blame.

Stores- Fluorescent lights are a bitch. Way too bright and there is that hum normies are able to tune out that our kids cant.
There are people they don't know coming towards them and moving in every direction. There is a voice from nowhere over head. Some beeping.We are moving, we are stopping..more beeping. Abby deals with this by making damn sure she hears nothing but her own voice....They call them Silent Angels....WHAT?

Restaurants- Light, Noise, Weird smells...Moms nervous. Trying to focus on the child while people stare. Whats the best way to deal with this environment? By losing your bowels or vomiting apparently. Good times.

Birthday parties- There arn't many of those. People will usually invite you once. Until you show up and the event turns from a day about your kid to a day about mine. Everyone trying to be nice and include them that they go too far or our kid gets overwhelmed and freaks the F out.

Church-Wow church. At others peoples houses I have observes one parent or grandparent staying home with the SN kiddos. Its easier. You cant leave your kid in kid Sunday school or child care. Most times the rooms are up or down stairs or they just don't have the ability to care to for the SN kid. When you take them into church they will spend the entire time....or at least mine will, yelling over the preacher or there goes the bowels again. Something about that little room and the echo and the confined space. I am embarrassed for her, for myself and for you to have to sit there and listen to a kid farting like a beer guzzling frat kid on an all bean diet. And the kid that absolutely will not fill her pants at school or while we are on vacation has absolutely no issue with doing it on an airplane, in a church or in a restaurant. I appreciate the comforting touch to my arm...cept I hate being touched but I cant punch you in church now can I? Pretty sure its a rule. The worst part is the pity. Stop pitying me. Hi. How you doing? Tousle her hair. Don't stop and talk to me like its a Barbara Walter interview and you are just waiting for me to cry. Want me to cry? I can do it. Any moment in time at any point in any given day. Id just rather not.

Home-Home rules! If she is tired she can sleep. If she had to go potty she can. If she wants to be fed by a tube into her stomach she can. She can do that while sleeping or sitting on the potty. And Dora is there. Dora is there all the time. She lives in her living room, bedroom and sometimes Dora even lives in the bathroom. No one makes her Mom sad at home...except the bill collectors and hey we have caller id so suck it right? At home nobody stares at her..Cept for Mom. While she's sleeping. Only thing better than Home and Dora is Mom. And at home Mom isn't crazy...Just don't ask Dad.

Time to fess up

Hey all.
First I want to apologize for abandoning this blog. I was not my intention and I do one day hope to get back to it.
As it is what happens sometimes, real life has gotten in the way of me having anything above and beyond my phisical responsibilities.
I am ill. I have been for a while. I ignored my symptoms because I dont have time for them. This past week I have made 2 trips to the emergency room where I was given Iv's, blood tests and sent on my way because I do not have insurance. On Thursday we finally got to speak to a social worker who got me into a sliding scale clinic..Oh joy..  For July 1st. I need many tests, treatments and other stuff...Not ready to be felt sorry for. Ive spent the last 6 years with the world feeling sorry for me. I dont want to be showered with more of it.
So, Im exhausted, Im anemic, Im weak. My house is a wreck but Abby is still unaffected...except that I had to cancel 3 therapies this week. I am not able to lift her except in and out of the car as I have no choice on that one.
My going to see my Grandmother on Hospice every weekend has suffered the past few weeks. Cant take a chance of passing out driving with Abby in a van with the steering going out....as I wrote that it is the exact reason I have put my writing on hold. My life is a pathetic mess.
Please pray for us....or whatever it is that you do.
Hope to talk to you soon,
Terri