Tuesday, October 26, 2010

4 years ago today

My baby. Eating a phone and wearing the bonnet she put on herselfHer first biter biscuit. What a mess. Took her and the chair to the shower afterwards.Chubby lil Monkey with toys in each handDestroying my living room as usualCaught her kissing herself in my Tiffany Mirror. Got this shot when she looked up at me. PricelessFeeding herself. The night before Rett came in the night and stole herThat day. Took this pic because we couldn't figure out why she was so blank and wouldn't stop messing with her fingers2 days before they told us Last year. Beautiful. My entire world


Most important. She is happy. Nothing else matters.

Four years ago today our world as we knew it and hoped for it came tumbling down.
Four years ago today we went to the hospital to visit the Genetics scientist. We were under the impression we were going to give them a medical history and draw more blood. We knew she didn't have Rett Syndrome because the test had already come back negative. We knew they had sent it off to Houston to what they called a backup deletion test but we didn't know what that was or what it meant.

We calmly walked in and sat down. The Doctor came in and smiled at us and got out his notebook and started going though the history on both sides. All the normal history questions. Heart, lung,cancer,lupus,diabetes..........This lasted almost an hour.


He then put down his notebook and said,"Well what we can tell you about Rett Syndrome is unfortunately not much......" He said more things but I stopped breathing and the room started spinning. I stopped him and told him that Abby didn't have Rett Syndrome because we had already taken the test. I just looked at him and said,"Did you just tell me my child has Rett Syndrome and just slipped it into conversation?"
He looked at me and said,"No Mrs. Vejrosta. What I am telling you is that Abigail DOES have Rett Syndrome.


I started to hyperventilate. The room went dark and I just shook and kept saying no, no, no over and over again. I looked over at my husband for help and his face was red and he was sliding out of his chair and shaking uncontrollably. He had gone into shock. I yelled at them to get somebody, to do something. They got him up on a table and gave him juice and I held him and told him it was OK and we were gonna do this. I told him she was still our baby and she was the same baby we had yesterday and the same baby we had this morning.

By the time we got George on his feet there was several of the genetics doctors and nurses in the room. I remember looking at my daughter who was wobbling around the room and twisting her fingers and smiling. I looked at one of the doctors and said, 'What do we do?"
She looked at me and said, "Take her home and make her comfortable."
I thought she was gonna die. I was so sick. I just shook. I was more worried about my husband though. He was inconsolable.

I went home with the website address they had given me on an over xeroxed piece of paper. The thing he handed me when he told me all I could do was find other families. That they would be the only support I would have and the only people who knew how to deal with Rett Syndrome.


I went home with this hard to read flyer and started to look up information. It did not make me feel any better. It made me feel horrible and empty.
I started looking up online Rett Support Groups an finally found one. They welcomed me immediately and the very next day I heard from the Rett Syndrome Association rep in our area. Later that day we heard from Kathy Hunter the founder of the Rett Syndrome association. We talked to these ladies several times over the next week and they assured me that although it was horrible we could handle it. That Abby was still our baby and we were just going to have to choose to be happy and to learn how to dream new dreams.


This year hasn't been much different from all the other years. This may sound horrible to say but D day...October 26th never goes away. It's almost like they day our baby died. She was lost many many months before but that was the day they told us for sure that nothing would ever be the same. Every time I pass the man who told us in the hall of the hospital part of me wants to kick him. Or beat him senseless with my purse. Not his fault that she has Rett Syndrome but I will never forgive THE WAY he told us.

One thing did come up this year. Day before yesterday. I had blocked it I guess. I remembered while volunteering in the church nursery what one of the last things Abby had said to me was. I have previously recounted over and over words or phrases she had..one of the things you have to tell ever medical person you see over and over..even at the same hospital. You think they'd just look it up rather then ask you time and time again. Something one of the kids did made it come back...
I was carrying Abby through the mall. She was on my left hip and I was drinking a fountain coke in the red and white cup. She kept leaning forward trying to get it. When I wouldn't give it to her she grabbed my shirt and stuck her face in mine and said, "I love you!.. Coke?" Completely normal. Totally a toddler. Never to hear again.

There are still days even four years later when I don't want to get out of bed. There are still nights when I cry myself to sleep. It usually hits after we have been around a girl her age and we see all that she can do. Or we meet a small child who has something we previously thought was the worst and watch him run circles around Abby and watch while he signs to his Dad and is able to communicate.

Abby is very wobbly like a infant just learning to walk. She can't climb up or downstairs. She cannot pick up or hold anything or talk or used her hands. She will never gain these skills unless there is a cure.

In the last four years we have met wonderful families in the same boat as us. They have become our family. I don't know what I would have done in the last four years without The Rettlanders, , Kelly and Carrie, Ingrid and all the new families that now come to me for advice and guidance.
To help, Learn, Advocate and Donate:

Tuesday, October 19, 2010

Lovin School

We absolutely love Abby's new school! She is having so much fun along with learning.This week is United Way week and for a dollar each day the kids have a different theme. Monday was crazy hat day! How cute is she?Today was backwards or mix match outfit day. Kind of had a hard time trying to get her not to match..she is such a little fashionista! Now this one is the best. Her teacher said a few weeks ago that Abby is the first child she didnt have to go into the typical class and tell them about Abby's issues. The kids just accept her..no questions. Last week and this week we started getting pics and drawings from her Kindergarten classmates. I thought they were sending the wrong papers home until the teacher told me the kids were drawing and coloring the pictures for Abby. I am just overwhelmed.
I had to take Abby to school this morning after pool therapy. When we went through the lunch room several kids from every table started calling out her name and waving. I am so so thrilled. She threw her arms up and giggled. What a great job this school does of integrating the Special kids with the typical kids. They should be very very proud!

Wednesday, October 13, 2010

How did she get here?

She sat there mouth agape. Looking at her account balance on the screen. $35.00 really? That's it? How could that possibly have happened? She thought 'oh well' and headed off to the store. Her son was out. Husband on the couch and the caregiver was playing with her daughter. She needed the break and the alone time. Still has some credit left and her daughter had to have the scripts today..and they were out of soap. A few more dollars on the card wouldn't matter now.

Walking into the store she steals a glance in the window of herself. Did she brush her hair today? Doesn't look like it. Runs through her day in her mind and realizes it's 7pm and she hasn't eaten today. Who forgets to eat?

Afterwards in the car ready to go back home she just lays back in the chair for a minute. So tired. So broke. Her good friend is in Hawaii right now. She goes every other year. Hawaii....she wonders what it's like. The only vacations she has been on in years is to meet up with other families just like hers. Both times she slept on a mattress on the floor because hotels and car rentals were out of the question. Plane trips with layovers,wheelchairs,meds and tube feeds are quite exhausting but the only break she gets. Doesn't make sense to travel 1800 miles like that to get away. She knows that most would never be able to understand the feeling of home you get by being with people that get it.

She gets ready to start the car and sees her. The little girl walking out of store with her mother. She looks to be about her own daughters age. Talking away...talking. Her eyes start to well as she watches the girl carrying the huge Disney Princess tea set out of the store. Carrying it. All by herself while she skips along next to her mother.

She starts the car and wonders when she'll ever get over it. Will she ever be able to look at another child her daughters age without hurting a hurt that is unimaginable? It will be 4 years since she knew. Since she found out her daughter would never talk. That she would eventually stop walking and eating and have gross developmental delays. Or is it global? So many doctors. Each with their own horrible view of her daughter and her future.

Driving on the highway she wonders why this happens to her every time she is alone. She yearns for alone time. No husbands. No teenagers begging and pouting. No diapers or meds or falls or tremors or constant screaming. Aches for it. Almost every time it comes, when she is alone with her thoughts the pity,heartbreak and tears come back. It always starts with either too many questions, the sight of a little girl or from that time you spend....gathering your thoughts and your plans. It always comes back to Why? How did she get here? WHY CAN'T SHE FIX IT? Why can't she get over it? She's the toughest bitch you know. Isn't she?

She walks in her tiny apartment door and is met with the caregiver handing her her 6 year old. Fresh from the tub and ready for that short cuddle time before the bedtime medicine and wound care ritual starts. She had dried her tears in the car. No one is looking at her funny are they?

Her daughter snuggles into her chest in the new thermal jammies her adopted grandmother bought her last week. She looks up at her mother and cocks her head. Oh no. She knows. She knows her mother is hurting. The little girl looks at her mother and says," I yah yah eww wah uhmah dah?"

She holds her daughter to her chest. Not wanting to put her to bed. Bed means sleep and sleep always means waking up in total panic mode. Did she hear her yet? She looks at the monitor every morning. MOVE she thinks. Cough,roll over, moan. Anything. Her mother walks to her room every...EVERY morning trying to make as much noise as possible on the way. Scared to death that if she isn't at least squirming she is going to touch a cold child. Every morning.

How did she get here? When will she wake up from this? Hoping tonight that she doesn't have that dream where Rett Syndrome was just a dream. Waking to discover the nightmare continues. Every day with every breath.

Sons home. Time to put the smile on.

"How was your day honey?"

Tuesday, October 12, 2010

Weekend Horse Show. SO MUCH FUN!

This weekend we took part in The Missouri Quarterhorse Association Show in Kearney Missouri where Abby does her Hippotherapy. We had seen the signs up and it had been on the schedule all year, so we decided to go pretty last minute.
Abby on the way when we told her she was gonna go ride horsey's! She loves it!Imagine our surprise when we arrived and they slapped a helmet on her head and a number on her back. I was in extreme panic mode. I didn't want her competing or losing anything...everHere she is as the judges came over and took a look at her and talked to her for a bit
These two look like sisters side by side. Thanks Nanny for letting us hang out with you!
The kids with their trophies and ribbons!

Abby with her TROPHY and RIBBON! YEAH! We told her she won for being the prettiest girl on her horse!
Such a little snot but pretty tired of my photo shoot at this point. You would think she'd never won a trophy before!

Tah Dah! I'm so thrilled. What an awesome program. Thank you Mary Jill and Staff at NTRC!

Friday, October 8, 2010

Dancing with friends!

Last Saturday a local church that one of our friends attends invited up to be part of their project fundraiser and to recongnize Rett Syndrome Awareness Month. Thank you so much Celia and NOCC! Many of our Dancing friends showed up. They are all so loving and concerned. We can always count on them to feel loved and to have a great time! Hope to see more of them soon! Abby meeting members of the congregation. They were all such wonderful loving people!
Grandpa John with Abby. She loves him so much!
Yeah It's Abby's Grandma Gerre. They surprised us and Abby was definately thrilled!
Everythings all about me! Woo hoo!
Abby dancing with her Daddy!
Daddy and Celia doing some Salsa dancing. We had a great time. Videos to come so stay tuned!

Monday, October 4, 2010

Breath holding breakthrough for Rett Syndrome!

Hello all.
Had this article sent to me through a friend in England.

Life threatening breathing disorder of Rett syndrome prevented
Press release issued 4 October 2010

A group of researchers at the University of Bristol have sequestered the potentially fatal breath holding episodes associated with the autistic-spectrum disorder Rett syndrome.

Rett syndrome is a developmental disorder of the brain that affects around 1 in10,000 young girls. One of the worse clinical disorders is the intermittent episodes of breath holding, putting the patient at risk of asphyxiation and further brain damage. Other disorders include repetitive hand movements, digestive and bowel problems, seizures, learning disability with lack of verbal skills and social withdrawal, making it a thoroughly debilitating disease.
However, an international team of researchers based at Bristol’s School of Physiology & Pharmacology have discovered a way to prevent these episodes of breath holding in a mouse model of Rett syndrome. Using a unique combination of drugs, they have discovered that the area of the brain that allows breathing to persist throughout life without interruption has reduced levels of a transmitter substance called aminobutyric acid.

Professor Julian Paton, who co-led the research, said: “These findings make a significant step in our understanding of the reasons why breathing is intermittent in Rett syndrome and give exciting hope for the future for alleviating young girls from these awful life threatening episodes of breath holding, which they experience regularly throughout the day.”

This autistic condition is caused by a spontaneous mutation in the gene that encodes for methyl-CpG-binding protein 2 or MeCP2. MeCP2 is very abundant in the brain and is a transcription factor that decodes DNA essential for making proteins in brain cells.

The researchers found that by increasing both the amount of aminobutyric acid (a vital brain signalling substance) and stimulating a specific type of serotonin receptor within the brain to suppress the activity of brain cells that normally depress inhalation, this abolished the life threatening episodes of breathing arrests.

“These exciting findings are particularly relevant since the drugs we used already have approval for use in humans to treat other illnesses, so the hope is that our findings can soon be translated across to sufferers of Rett Syndrome, and possibly other breathing disorders” said Professor John Bissonnette from the University of Oregon who co-led the study.

The findings of the study, which was funded by the International Rett Syndrome Foundation and the National Institutes of Health, are revealed in a paper published by the journal – Proceedings in the National Academy of Science (PNAS).

Please contact Aliya Mughal for further information.
You can find the article in it's original releaase at:

http://www.bristol.ac.uk/news/2010/7233.html

Sunday, October 3, 2010

Birthday Girl!

We had a small birthday party at home for Abby on Sunday. We were going to do it after the strollathon but Momma was exhausted.
This was her reaction when I opened her Dora doll. She squealled. It was amazing.Oh I love my presents Mommy. I must kiss them!And a good birthday smack for Daddy! And a kiss from my cousin Beau! So embarrasing!