Therapy

Murphy's Law was all over us this morning and we had to cancel Abby's Physical Therapy appointment...Snowing to beat the band and neither one of is feeling too woopie. We have never missed a therapy appointment.

We did take a couple of videos last week. To someone not involved in the world of Rett these may seem very so what to you. For those of us that live it these are jump for joy moments.

Since Abby was down last year for so many months she lost almost all of her core strength and walking ability. She can no longer walk more than a few feet without assistance. Above she is working on leg strength and climbing the stairs on her own. You will be able to see how very hard it is for her brain and body to work together..especially when she attempts to walk down. Because of her severe vertigo and no center of gravity there is no down stepping for Abby so far...we hope to change that or at least hang on to what we can and fight this Rett Syndrome Monster any way we can.

The video below was also taken last week. Working on a swing for a child who has such extreme hypotonia and no purposeful hand use has been challenging but she is working super hard and we are so thrilled that she can hang on at all now. She is such a little toughie and I am so proud of her!

Disgusted

See this beautiful child? This is her blog and her familes blog. We talk about her life,her world and the rare coondition that robbed her of everything. This is not a place for you to post por-nography in the comments. Nor is it a place for you to advertise your dirty little businsses. I am sure there are plenty of places to do that other than a disabled little girls blog.
I had to delete to of my favorite posts becuase of your pervertedness. You should be ashamed of yourself.
I don't know if you are specifically coming here directly or posting through the medical community blog. Either way you must stop or I will find out and I will take legal action against you!

Girl Power 2 Cure

Girl Power 2 Cure is the Charity that I raise money for for Rett Syndrome. Today the founder was featured in Parents and I was amazed to see Abby's picture in the video twice. She works do hard for our girls. I hope you will watch. Go Ingrid!

Gotta get it out

There are days as a caregiver that you just run on autopilot. Wake up,check if she's breathing,check her wound,feed,vent,medicate,lift etc etc etc. There are so many days when I've had 2 hours of sleep,my knees can barely make it up the stairs with her that I wonder why I am being punished. Not by her. Not at all. Why I cannot receive even a small income to take care of my child who cannot speak, use her hands, stand or walk without assistance. She is tube fed and on a very strict schedule. Because I stay home with her, not because I am lazy but because I know that she can receive no better care than from her own mother I am punished. I receive no income. Every quarter my social security statement shows up telling me that I'm not working so I will get less and less once I become 67 or 70. Am I not working? If I absolutely cannot be allowed to be paid to take care of my completely genetically disabled child can we at least put a hold on the amount I would of received when I stopped working? I worked and paid my taxes for decades..

While I'm on this rampage...there are many many states where parents are paid to care for their disabled children. Some have to wait till those children are grown. Others do not. Why arn't the laws and policies the samein every state for every person? We do not live in different countries. Agency's will pay strangers to come in and give me a break and pay them hourly what I got paid overtime at my highest rate. And they are even allowed to take breaks and comb their hair and shower before the job starts. Oh how I would love a congressman or a lawmaker to come an spend a week in my home.

There are days like today where I smile at her as she smiles at me and leans in for her 30th tongue kiss of the morning that I wish I could know what she's thinking. Maybe if I stare at her a little harder or hug her a little tighter I can hear her. That little voice trapped behind those sparkling blue eyes and that incredible smile. Mommy your doing a great job. Thanks for always being here. And how do you know the words to every song ever made?

During the school year I yell and scream and stomp my feet about how much she knows and how much she is in there and how if the would just give her a chance she could show them.

What will she show them? I think they(the educators and therapists) think that I live in this bubble where I think she's doing algebra in her head and planning her first architectural project as soon as she can use her hands. I am not delusional or uneducated. I do not live with my head buried in the sand. Although that would be nice. I would make it pink sand and I would have headphones with nature sounds playing.

I am completely aware that with the lack of a treatment or a cure the best I can hope for is for her to be able to click a button or facepoint or eyes gaze at colors,shapes and characters. Weather she is 5 or 45. Will I say that out loud to them? NO!

She is so happy. She smiles and sings all day long. If she's not passing out giggles,hugs and kisses there is something very wrong. I wonder if that's just it. She's just happy. I am the coolest thing ever. She looks at me and smiles like a baby would. Is she thinking Mom you are so awesome? You really get me. Or does it not really go beyond I like pink and those are birds? The not knowing is what eats me alive. That and having absolutely no control of anything weather it be right or wrong..I hardly ever cry anymore. I guess that's a start.

Retarded!!!

What a horrible word. I will have to say this word has to be my biggest pet peeve.
Three years ago my now 5 year old daughter was diagnosed with a Neurodevelopmental Disorder called Rett Syndrome. It quite suddenly robbed her of her ability to speak,use her hands and she lost almost every kill she had acquired up to that point.
Why? There is a gene on your x chromosome that controls your every movement and every thought. It's the regulatory gene for all other genes in your body. This gene doesn't kick on until you start walking,talking,eating and running. When a toddler really starts to become independent. If this gene if faulty.....then everything stops working.
The things my daughter can do take her a long long time. She has trouble eating,sleeping,digesting,breathing. She cannot speak. The list goes on and on
She looks completely normal. In fact..she's beautiful
In today's world there are many many people with syndromes and disorders that limit them. That keep them from being able to function in a typical or normal capacity. All these people have friends and family all around you.
1 in 100 people have some form of autism
Close to a million people in the US have Cerebral Palsy
1 in 800 people have Down Syndrome
There are hundreds of Neurological diseases or syndromes out there. Some genetic some by injury.
Is this funny? A joke?
In the last year...as my daughter grows and it is more and more apparent that she is not typical I have become especially sensitive to this term.
Almost every time I go to a restaurant or a store of any kind I hear this word outloud used as slang. Used as a description for stupid,ignorant,ugly,silly or something non acceptable.
Over the summer my family was at an Applebees sitted next to a girl who was my daughters age. She was celebrating her birthday with her family. Little girls are hard for me. To see a typical child be able to walk and talk and sing and tell jokes makes my heart ache for what could of been.
At some point during dinner she was showing off and being silly. Something I would give anything to see my daughter do. She told a joke that made no sense and her mother announced that she was retarded and everyone laughed hysterically.
I was so sick I became physically ill and had to leave as I was sobbing.
In the parking lot I started to hyperventilate and had a panic attack. My husband walked back into the restaurant and pulled the father aside and told him how this word and their use of it had his wife in such a state that she was a mess in the parking lot. They apologized and seemed confused as to why we would even say anything to them.
Two different times at Walmart this week I have had to say something to someone. The first was in customer service when I heard that the line was retarded and walmart people are retarded.
Two days later in the movie aisle I turned the corner and saw a teenager with her father looking at movies where they passes the R word back and forth 6 times describing the movies and each other.
To me and to many many families like ours this is the same as using the N word,Chink,Spick or the F word in public or at all. It makes the person using it seem insensitive,moronic and completely lacking of any manners or social skills.
There is a law before congress to ban this term. It's called Rosa's law. You can read the story here.
There is also a very touching speech by a young man with a child who is challenged to to an illness. You can view this very moving speech below. Please educate yourself and show some empathy for others.

Christmas!!!

We had an absolutely wonderful Christmas. Last year we were not able to get much for the kids and nothing for each other as usual. In early November a lady called to tell us she knew we wouldn't ask or stand in line anywhere, even though we more than qualify for assistance so she was going to get us adopted. I tried to tell her no but she told me where to put my pride and said that she was going to do it anyway...I have to say Thank you Cindy! On Christmas Eve 2 gentlemen and a little girl came and knocked around noon. They had 2 bags full of gifts and they were more than generous with us. I don't know who they were or what she told them but they really went all out. I do have to say that I was especially touched that they brought the little girl. She was obviously overwhelmed and a little shocked by Abby I think. I was so touched by the lessons they are teaching her. It is invaluable and something many people never learn. It really is. Showing her that there are people so much worse off than she is is teaching her empathy and the lesson that she should be charitable and never feel entitled whether she knows it now or not. I think that brought tears to my eyes more than anything else. And we were not the only family they did this for. They had several more deliveries to make. I hope they have some idea how thankful we are for people like them.Daddy helping Abby open some of the gifts our Angels got for her. She's not able to use her hands or speak but the look on her face says it allKyler is opening the Wii they got for him and you can tell he was so confused like he couldn't believe it.Abby's shock at the Dora doll. We got his one. We didn't get pictures of her kissing her but she did after a few minutes. She loves her.Below Abby is playing kissy face with her brother. She is pretty rough about it and he gets slapped alot but he loves her

This a pic of Abby with her private duty nurse. We love her. She is such a help to us.

Abby with all the bling she got. She is such a little fashionista!

This is our girl after she opened the box of hair bows our Angles got her. Now if only all kids could be made this happy over a box of hair bows!!!

Cheese! I'm spoiled rotten!

We dont put up a tree for safety reasons but she still loves looking at them. This was a neighbors tree. She was so excited she was squealing and biting herself.

Preschool holiday party

This posting is a bit overdue. Abby had her holiday party ather last year of preschool and had a ball! She was a little overwhelmed at so many people being there but she had a great time and of course her bff Madison watched out for her at all timesAbby with her OT above making play doe..yikes Hey Mommy I'm making Play Doe!

Abby with her Madison and some red and white guy. Who cares? Madison is here!

Love!!!!

Abby's teacher for her 1st 2 years of preschool came to visit and help out and Abby was thrilled!!

Christmas pics coming soon!!!