Showing posts with label Rett Syndrome. Show all posts
Showing posts with label Rett Syndrome. Show all posts
Saturday, March 15, 2014
AN ACCESSIBLE VAN FOR ABBY!
To keep track daily join this blogs Facebook page at : Abbysworld on Facebook
Monday, March 3, 2014
Daddy change the channel
The one thing us Special Needs and Rett parents harp on endlessly is the fact that our kids are in there. They are communicating. They can hear you. You just cant hear them...because you are not listening.
She can hear her thoughts. She thinks you can too. She looked at that remote and said change the channel. Did you listen? Did you look?
Teach the way she learns...and learn the way she speaks
She speaks
Saturday, February 22, 2014
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!
***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
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!
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!
Saturday, June 9, 2012
Dear God, can you do something about this Rett Syndrome stuff now please?
Dear God,
It's me Abby. Can I get you to do something about Rett Syndrome please?
Today drove me and my Mom crazy. She means well but sometimes she just doesn't get it.
She is very sick. Her mind is not right. Today when she went to take my brother his wallet at work, she picked me up and walked to our front door. I sat on her hip wondering why she was pointing the car remote at the front door. She would hit unlock then try to open the door. I watched her do it twice. When she was turning with me to shut the door after her mess up, she caught my arm on the door and pinched my elbow. She thought maybe she had hurt me but I just looked at her and looked at my arm. I wish I could have told her. I'm sure she would have kissed my boo boo. Instead she just walked clueless to the car.
She tried to take a nap but when she laid there, all she could do was cough and cough. I heard her call a couple of people to ask if they could come over and help her. I think they said no because she cried and nobody came.
I looked at her in her bed when she was coughing and crying. I wish I could go make her some soup or bring her some tissues. I can't get out of my bed. Believe me I tried.
When it was time to feed me today Mommy did it wrong. She made my bag right. She put all my vitamins in it. She didn't notice when she plugged the tube into my belly that it fell right out and was laying next to my left leg. I tried to tell her while she was eating her soup that I was hungry but the words wouldn't come out. Mom pretends that she knows what I am thinking and just told me I couldn't have any of her soup because it had noodles in it and noodles are made of wheat. I looked at her harder and she thought maybe I didn't like what was on TV, so she kept changing the channel, not understanding that I was telling her my food was leaking on the side of my leg and wheelchair.
My timer finally went off on my feeding machine and when she came over to unhook me she saw the food all over my leg,chair and the floor. It makes me sad when my Mom cries. I tried to tell her it was OK but she just kept begging me to forgive her and telling me she wished I could talk.
I wish I could talk God. I wish me and all my Rett sisters and brothers could talk. We hear the words in our heads but they won't come out of our mouths. We are used to it mostly but when we really need it it is really hard sometimes. I don't want to see my Mommy cry anymore God. When she was cleaning me up she saw the red and purple mark on my arm where she had caught it on the door. Either that woman is a complete bawl bag or she really needs some rest.
Dear God. Can you please do something about this Rett Syndrome stuff now please?
Your child,
Abby
It's me Abby. Can I get you to do something about Rett Syndrome please?
Today drove me and my Mom crazy. She means well but sometimes she just doesn't get it.
She is very sick. Her mind is not right. Today when she went to take my brother his wallet at work, she picked me up and walked to our front door. I sat on her hip wondering why she was pointing the car remote at the front door. She would hit unlock then try to open the door. I watched her do it twice. When she was turning with me to shut the door after her mess up, she caught my arm on the door and pinched my elbow. She thought maybe she had hurt me but I just looked at her and looked at my arm. I wish I could have told her. I'm sure she would have kissed my boo boo. Instead she just walked clueless to the car.
She tried to take a nap but when she laid there, all she could do was cough and cough. I heard her call a couple of people to ask if they could come over and help her. I think they said no because she cried and nobody came.
I looked at her in her bed when she was coughing and crying. I wish I could go make her some soup or bring her some tissues. I can't get out of my bed. Believe me I tried.
When it was time to feed me today Mommy did it wrong. She made my bag right. She put all my vitamins in it. She didn't notice when she plugged the tube into my belly that it fell right out and was laying next to my left leg. I tried to tell her while she was eating her soup that I was hungry but the words wouldn't come out. Mom pretends that she knows what I am thinking and just told me I couldn't have any of her soup because it had noodles in it and noodles are made of wheat. I looked at her harder and she thought maybe I didn't like what was on TV, so she kept changing the channel, not understanding that I was telling her my food was leaking on the side of my leg and wheelchair.
My timer finally went off on my feeding machine and when she came over to unhook me she saw the food all over my leg,chair and the floor. It makes me sad when my Mom cries. I tried to tell her it was OK but she just kept begging me to forgive her and telling me she wished I could talk.
I wish I could talk God. I wish me and all my Rett sisters and brothers could talk. We hear the words in our heads but they won't come out of our mouths. We are used to it mostly but when we really need it it is really hard sometimes. I don't want to see my Mommy cry anymore God. When she was cleaning me up she saw the red and purple mark on my arm where she had caught it on the door. Either that woman is a complete bawl bag or she really needs some rest.
Dear God. Can you please do something about this Rett Syndrome stuff now please?
Your child,
Abby
Friday, April 8, 2011
A good day.
Kinda. OK mostly.
Yesterday I took Abby into church to meet with the ladies in the bible study group. They had been asking me to come in for a while. One car and Mr Workaholic didn't realty make that possible. We were going because they want to help me take care of Abby. Respite, babysitting, in case of emergency things like that. I have all but made the final decision that I don't want to have another stranger sent from an agency in my home. Especially after finding out the last one..one of the biggest in the state doesn't even drug test their employees. Seriously!
It was hard to take her in there. Those women are so loving and do not hide their emotions well. Abby was all but unconscious from the up in seizure meds so there were a few tears.
I didn't really prepare well. I just kinda went in a blabbed. Some of the ladies looked pretty overwhelmed by the thought of the meds and the gtube. Its not hard. I got showed once before we left the hospital. There is a ton to remember but everything will be written down step buy step and no one will be left with her until they are comfortable.
I just need to be able to go to a movie or a library or anything. The boys get to leave and stay gone whenever they want. With my responsibilities and lack of a vehicle leave me trapped...and I am beyond losing it and past the pride portion of not asking for help. I don't want money just time and care. Unless someone were to win the lottery....
After the meeting I decided not to take her to school. She had not woken up since 9pm the night before except for a moment while I was dressing her. She ended up sleeping till about 430 pm. I hate seizure meds almost as much as I hate Rett Syndrome! Almost!
OK so the good part..or the better part. As most of you know Abby has almost no functional hand use. She occasionally will swipe in the direction of what she wants but rarely makes contact and cannot grasp or hold.
Yesterday at Hippotherapy she amazed us. It may not be something that would be amazing to a Neurotypical parent but for a Rett Parent...We don't take anything for granted.
I was sitting next to Jen. Rivers Mom. Abby was on her horse on the other side of the arena.I really cant see that far so I thought that I imagined that Abby had something yellow in her hand. Jen turned to me and said did she just have that in her hand? We weren't sure so we kept watching. When they got her closer they did it again. She reached into a bucket and pulled out a yellow sponge the lifted her hand and dropped it in the bucket. You would of thought she just scored a touchdown at the Superbowl..except you cant scream at Hippotherapy because you will spook the horses your children are on. We stiffled our screams with hugs and tears. It was an incredible moment.
When she got off the horse I asked them what they were doing and she showed me..She made her do it again while standing with support and she did it. The therapist there is new and was just doing normal OT. I love the new people that come in with that lets see what she can and cant do and work on it. Because frankly, I have had it with the old, tired, none of these kids can do anything but soil themselves attitude.
Her Boss is getting a call today.
And Abby will be getting a bucket full of sponges in her Easter basket!
Yesterday I took Abby into church to meet with the ladies in the bible study group. They had been asking me to come in for a while. One car and Mr Workaholic didn't realty make that possible. We were going because they want to help me take care of Abby. Respite, babysitting, in case of emergency things like that. I have all but made the final decision that I don't want to have another stranger sent from an agency in my home. Especially after finding out the last one..one of the biggest in the state doesn't even drug test their employees. Seriously!
It was hard to take her in there. Those women are so loving and do not hide their emotions well. Abby was all but unconscious from the up in seizure meds so there were a few tears.
I didn't really prepare well. I just kinda went in a blabbed. Some of the ladies looked pretty overwhelmed by the thought of the meds and the gtube. Its not hard. I got showed once before we left the hospital. There is a ton to remember but everything will be written down step buy step and no one will be left with her until they are comfortable.
I just need to be able to go to a movie or a library or anything. The boys get to leave and stay gone whenever they want. With my responsibilities and lack of a vehicle leave me trapped...and I am beyond losing it and past the pride portion of not asking for help. I don't want money just time and care. Unless someone were to win the lottery....
After the meeting I decided not to take her to school. She had not woken up since 9pm the night before except for a moment while I was dressing her. She ended up sleeping till about 430 pm. I hate seizure meds almost as much as I hate Rett Syndrome! Almost!
OK so the good part..or the better part. As most of you know Abby has almost no functional hand use. She occasionally will swipe in the direction of what she wants but rarely makes contact and cannot grasp or hold.
Yesterday at Hippotherapy she amazed us. It may not be something that would be amazing to a Neurotypical parent but for a Rett Parent...We don't take anything for granted.
I was sitting next to Jen. Rivers Mom. Abby was on her horse on the other side of the arena.I really cant see that far so I thought that I imagined that Abby had something yellow in her hand. Jen turned to me and said did she just have that in her hand? We weren't sure so we kept watching. When they got her closer they did it again. She reached into a bucket and pulled out a yellow sponge the lifted her hand and dropped it in the bucket. You would of thought she just scored a touchdown at the Superbowl..except you cant scream at Hippotherapy because you will spook the horses your children are on. We stiffled our screams with hugs and tears. It was an incredible moment.
When she got off the horse I asked them what they were doing and she showed me..She made her do it again while standing with support and she did it. The therapist there is new and was just doing normal OT. I love the new people that come in with that lets see what she can and cant do and work on it. Because frankly, I have had it with the old, tired, none of these kids can do anything but soil themselves attitude.
Her Boss is getting a call today.
And Abby will be getting a bucket full of sponges in her Easter basket!
Wednesday, April 6, 2011
Stupid Stinking Seizures!
Yep.
I friggen hate Rett Syndrome!
Last night I was giving Abby a bath..she had gotten very upset because someone who was watching her while I went to the store let her soil herself. She was in hysterics.
She bit me and pulled my hair as I cleaned her up. When she calmed down and smiled at me...I just lost it. I had one hand on her legs and one on her head to keep her from falling and I just buried my face in my shirt and bawled as quietly as I could. She was so pretty, with her big blue eyes. So grateful that Mommy had fixed it without saying a word.
My heart just ached for her. Why wont it go away? Will she ever be able to wake up from this nightmare? Where is her cure? We pray..we beg..everyone we know does...why can't she be fixed? Healed? Please God... And if one of you dares tell me that some must suffer so others may know joy will be uttering your last breath...just saying.
This morning was good. No problems...Until...we arrived at the Community Center for swim therapy. As we pulled in she was fine. When I put the van in gear George yelled that something was wrong. I jumped out and opened the door and she was completely slumped over, head to knees. I thought, Oh no not drop seizures now. Drops are when they seem to just lose consciousness for a few to 30 seconds or so, then they come right back like nothing happened. She didn't come right back up and I could hear gurgling. I lifted her up and she was gray..lips were blue and she was gurgling. I opened her mouth and her tongue was shaking. I opened her eye and it was twitching and rolling. I called her name...nothing..over and over.
I called my friend who's daughter has the same deletion of the gene that causes Rett Syndrome that Abby does and begged for help. She told me to get to a hospital and I freaked. Squeaky high pitch sobbing. I knew I needed to get her somewhere. The nearest hospital would ask us a thousand questions then send us to Children's 20 minutes away. We were losing time.
We flew home. I ran inside and got the Diastat I should of been carrying with me. We gave it to her in the seat of the car...Diastat stops the seizure and knocks them out and she was already knocked out.
Off to the hospital. 5 hours of the same old she has Rett Syndrome and it is a seizure disorder..their words. Neuro on call doubles her medicine that I hate anyway. The one that has made her a zombie. I throw a fit and want to talk to her Neurologist..Nope do as your told lady.
She finally wakes up after much prodding from me. She had been on her side snoring like a lumberjack. When she opens her eyes and turns to look at the doctor the doctor actually snapped her head a bit and said,"Oh my God. She's beautiful." I know...I know.
I tell them as we are being released that I will not be giving her the change in med until we speak to her doctor..they just stand there giving me the studies say per weight blah blah blah
My 24 hour a day studies say this crap took what was left of my baby from me...just like I said it would.
Off to the pharmacy..where they give me 2 boxes of double dose Diastat. Yah. She went from 5 mg to 10 mg with one seizure. I questioned it. They told me that was what was ordered. I question it again and they tell me its based on weight. I ask them to check and they tell me it's fine..it just didn't sound right.
Call the Neuro when we get home to get a follow up appointment because we arn't scheduled to go back in for 7 weeks..of course they see no need to see her. Friggen fracken geiglag fruggle boogah gak!
I question the meds and the nurse says the Diastat is wrong....I TOLD YA SO!!!!!
I question the other. The everyday Zombie med and tell her it's a big jump and she's still a zombie. SOMEONE ACTUALLY LISTENED TO ME! I know right? I didn't even ask if you were sitting down did I? She is going to contact Abby's Neuro and tell him of my concerns because she shouldn't still be lethargic and if she is they will more than likely want to make a change.
That's what we have for now..she's tired but happy. Going to keep her home tomorrow to keep an eye on her.
More later...
ZZZZZ....
I friggen hate Rett Syndrome!
Last night I was giving Abby a bath..she had gotten very upset because someone who was watching her while I went to the store let her soil herself. She was in hysterics.
She bit me and pulled my hair as I cleaned her up. When she calmed down and smiled at me...I just lost it. I had one hand on her legs and one on her head to keep her from falling and I just buried my face in my shirt and bawled as quietly as I could. She was so pretty, with her big blue eyes. So grateful that Mommy had fixed it without saying a word.
My heart just ached for her. Why wont it go away? Will she ever be able to wake up from this nightmare? Where is her cure? We pray..we beg..everyone we know does...why can't she be fixed? Healed? Please God... And if one of you dares tell me that some must suffer so others may know joy will be uttering your last breath...just saying.
This morning was good. No problems...Until...we arrived at the Community Center for swim therapy. As we pulled in she was fine. When I put the van in gear George yelled that something was wrong. I jumped out and opened the door and she was completely slumped over, head to knees. I thought, Oh no not drop seizures now. Drops are when they seem to just lose consciousness for a few to 30 seconds or so, then they come right back like nothing happened. She didn't come right back up and I could hear gurgling. I lifted her up and she was gray..lips were blue and she was gurgling. I opened her mouth and her tongue was shaking. I opened her eye and it was twitching and rolling. I called her name...nothing..over and over.
I called my friend who's daughter has the same deletion of the gene that causes Rett Syndrome that Abby does and begged for help. She told me to get to a hospital and I freaked. Squeaky high pitch sobbing. I knew I needed to get her somewhere. The nearest hospital would ask us a thousand questions then send us to Children's 20 minutes away. We were losing time.
We flew home. I ran inside and got the Diastat I should of been carrying with me. We gave it to her in the seat of the car...Diastat stops the seizure and knocks them out and she was already knocked out.
Off to the hospital. 5 hours of the same old she has Rett Syndrome and it is a seizure disorder..their words. Neuro on call doubles her medicine that I hate anyway. The one that has made her a zombie. I throw a fit and want to talk to her Neurologist..Nope do as your told lady.
She finally wakes up after much prodding from me. She had been on her side snoring like a lumberjack. When she opens her eyes and turns to look at the doctor the doctor actually snapped her head a bit and said,"Oh my God. She's beautiful." I know...I know.
I tell them as we are being released that I will not be giving her the change in med until we speak to her doctor..they just stand there giving me the studies say per weight blah blah blah
My 24 hour a day studies say this crap took what was left of my baby from me...just like I said it would.
Off to the pharmacy..where they give me 2 boxes of double dose Diastat. Yah. She went from 5 mg to 10 mg with one seizure. I questioned it. They told me that was what was ordered. I question it again and they tell me its based on weight. I ask them to check and they tell me it's fine..it just didn't sound right.
Call the Neuro when we get home to get a follow up appointment because we arn't scheduled to go back in for 7 weeks..of course they see no need to see her. Friggen fracken geiglag fruggle boogah gak!
I question the meds and the nurse says the Diastat is wrong....I TOLD YA SO!!!!!
I question the other. The everyday Zombie med and tell her it's a big jump and she's still a zombie. SOMEONE ACTUALLY LISTENED TO ME! I know right? I didn't even ask if you were sitting down did I? She is going to contact Abby's Neuro and tell him of my concerns because she shouldn't still be lethargic and if she is they will more than likely want to make a change.
That's what we have for now..she's tired but happy. Going to keep her home tomorrow to keep an eye on her.
More later...
ZZZZZ....
Friday, April 1, 2011
IEP's for Rett Syndrome and my Abby
Hell hath no fury like a woman scorned....
No one is more frustrated and pissed than a Rettmom fresh out of an IEP for a girl with Rett Syndrome.
After our meeting..the 4Th of the year I think...My head hurt. I was getting dizzy from holding my breath. My fingers hurt from gripping the steering wheel. I felt like one of those old Felix the Cat clocks..showing my age..tic tic tic with my eyes rolling to and fro.
I need to change my standard operating procedure for these things. Last time I went in thinking I was prepared. Thinking."they" actually got it. I had given them books,literature,papers,studies,videos...
I even went in thinking..almost chanting..be nice..be nice.. Don't flip out. Don't scream..that wont get you anywhere. Didn't work. I was hateful. Almost mean.
After that meeting our super Neurologist called the AT and spoke to her for several hours. She told me she was nice and didn't understand at first but she did now..I thought she was right. I don't know how you cant understand that you cant make a Rettgirl use her hands. You are not going to get a non verbal child to speak. A child that cannot use her hands will not point at a picture or press a button. She is no less intelligent than her peers..the ones with devices they carry around with them because they can press the buttons and point. She looks at what she wants. It's called eye gaze. Videos,books,papers....not like I'm making this stuff up.
I was told about a month ago that the district would be purchasing a Dynavox Eye Max for the classroom...for the classroom because..well lets face it..they have to say its for the class. This one kid isn't worth the money and doesn't have the same basic right to communicate that her peers do. I had requested a My Tobii. They work great with Rettgirls and I have seen Abby use one.
So I go in and sit down...There are 3 people not there that I had been informed would be including a district representative and her Kindergarten teacher.
Be nice..don't verbally shred the AT like you did last time Terri. Act like a 41 year old mother and advocate. Not a rabid banshee for crying out loud. Let them talk. Hear what they have to say. Don't say no to everything and don't get pissed!
I have no idea where it went sour...probably when the AT opened her mouth. She actually said, and I quote," I am going to have to disagree with your Neurologist. Just because Abby was able to look at pictures on a screen doesn't mean she can comprehend what she is looking at. I saw no cause and effect. There were no questions and answers. Just Abby looking at pictures on a screen. It doesn't prove comprehension."
This after talking to the Neurologist. After admitting to her that she had never worked with a child with Rett Syndrome and didn't understand eye gaze. She then talked about tickling Rettgirls to get answers. The ever brought up head switch. Abby is the first Rettgirl she has ever dealt with. She observed 2 at an AT conference last year at a booth for a few minutes. Now she apparently knows more than me and one of the worlds authorities on Rett Syndrome.
Wow.
So what is she thinking? I think its a my way or no way kind of thing. I do AT so I know more than you. I'm thinking I'm never going to get anywhere here. I really don't think I can reach these people.
Rett Syndrome is what I do. I live it, I breath it.
The consistency thing kept coming up...HELLO!!!! They want her to be consistent and scoffed at my revelation that sometimes a blink while looking directly at you is yes. The next time yes is her putting her hands up in the air in the touchdown pose. Sometimes it's a smile while she hugs herself. It all means yes... how about some quotes from the worlds authority on AT and Rett Syndrome (Linda Burkhart):
".....Language components: motivation, processing of language in
activity, pragmatics, processing of questions, auditory filtering,
processing of symbol set, syntax/grammar, attention to task, memory
• Juggling means that the child may only have some of the ‘balls in the air’ at
any given time, and having all the ‘balls in the air’ will be rare. This explains
why performance is so inconsistent and can not always be predictably
repeated
• Need to take successes and move on, as opposed to requiring repetition of
the task over a given number of trials
• Provide opportunities for repetition/practice within natural contexts
without pressure. Use variation and natural motivation
• Recognize the difference between Testing and Teaching
• Children learn by doing
• Emphasize Experience - not drills
Parallel Programming:
• Coordinating all components of a task on an automatic level is extremely
challenging for children with Rett Syndrome
• Child can become easily frustrated
• If we wait for everything to develop in a coordinated fashion, we will be
waiting forever...."
I have given them this literature 3 times. Every member of the team and the district. Linda Burkhart has never met Abby. The first time I read this paper I jumped up screaming, " YES YES YES" It was like she had met her and had wrote the paper on her.
How did I handle all this? Dirty looks. Glares. A couple mutterings of "Whatever you don't listen to me anyway."
Then I made her functional skills teacher cry...Totally not my intent. I adore that woman but I was fed up. But, If they are not even going to try to work with ABBY..i,e. INDIVIDUAL EDUCATION PLAN..then there is really no point in her being there. SO I put half days for next year on the table. If she is just there to socialize and get only the bare minimum therapy then it might as well be playtime and respite for me.
The PT refuses any more than 30 minutes a week. Abby's scoliosis curve has gone from 17 degrees to 34 since August. I already doubled her Speech and OT time.
Why is a woman that stops by a couple of times a month in charge of my child's education?? Somethings gotta change. If that means keeping her at home and doing it myself then by God that's what I will do
No one is more frustrated and pissed than a Rettmom fresh out of an IEP for a girl with Rett Syndrome.
After our meeting..the 4Th of the year I think...My head hurt. I was getting dizzy from holding my breath. My fingers hurt from gripping the steering wheel. I felt like one of those old Felix the Cat clocks..showing my age..tic tic tic with my eyes rolling to and fro.
I need to change my standard operating procedure for these things. Last time I went in thinking I was prepared. Thinking."they" actually got it. I had given them books,literature,papers,studies,videos...
I even went in thinking..almost chanting..be nice..be nice.. Don't flip out. Don't scream..that wont get you anywhere. Didn't work. I was hateful. Almost mean.
After that meeting our super Neurologist called the AT and spoke to her for several hours. She told me she was nice and didn't understand at first but she did now..I thought she was right. I don't know how you cant understand that you cant make a Rettgirl use her hands. You are not going to get a non verbal child to speak. A child that cannot use her hands will not point at a picture or press a button. She is no less intelligent than her peers..the ones with devices they carry around with them because they can press the buttons and point. She looks at what she wants. It's called eye gaze. Videos,books,papers....not like I'm making this stuff up.
I was told about a month ago that the district would be purchasing a Dynavox Eye Max for the classroom...for the classroom because..well lets face it..they have to say its for the class. This one kid isn't worth the money and doesn't have the same basic right to communicate that her peers do. I had requested a My Tobii. They work great with Rettgirls and I have seen Abby use one.
So I go in and sit down...There are 3 people not there that I had been informed would be including a district representative and her Kindergarten teacher.
Be nice..don't verbally shred the AT like you did last time Terri. Act like a 41 year old mother and advocate. Not a rabid banshee for crying out loud. Let them talk. Hear what they have to say. Don't say no to everything and don't get pissed!
I have no idea where it went sour...probably when the AT opened her mouth. She actually said, and I quote," I am going to have to disagree with your Neurologist. Just because Abby was able to look at pictures on a screen doesn't mean she can comprehend what she is looking at. I saw no cause and effect. There were no questions and answers. Just Abby looking at pictures on a screen. It doesn't prove comprehension."
This after talking to the Neurologist. After admitting to her that she had never worked with a child with Rett Syndrome and didn't understand eye gaze. She then talked about tickling Rettgirls to get answers. The ever brought up head switch. Abby is the first Rettgirl she has ever dealt with. She observed 2 at an AT conference last year at a booth for a few minutes. Now she apparently knows more than me and one of the worlds authorities on Rett Syndrome.
Wow.
So what is she thinking? I think its a my way or no way kind of thing. I do AT so I know more than you. I'm thinking I'm never going to get anywhere here. I really don't think I can reach these people.
Rett Syndrome is what I do. I live it, I breath it.
The consistency thing kept coming up...HELLO!!!! They want her to be consistent and scoffed at my revelation that sometimes a blink while looking directly at you is yes. The next time yes is her putting her hands up in the air in the touchdown pose. Sometimes it's a smile while she hugs herself. It all means yes... how about some quotes from the worlds authority on AT and Rett Syndrome (Linda Burkhart):
".....Language components: motivation, processing of language in
activity, pragmatics, processing of questions, auditory filtering,
processing of symbol set, syntax/grammar, attention to task, memory
• Juggling means that the child may only have some of the ‘balls in the air’ at
any given time, and having all the ‘balls in the air’ will be rare. This explains
why performance is so inconsistent and can not always be predictably
repeated
• Need to take successes and move on, as opposed to requiring repetition of
the task over a given number of trials
• Provide opportunities for repetition/practice within natural contexts
without pressure. Use variation and natural motivation
• Recognize the difference between Testing and Teaching
• Children learn by doing
• Emphasize Experience - not drills
Parallel Programming:
• Coordinating all components of a task on an automatic level is extremely
challenging for children with Rett Syndrome
• Child can become easily frustrated
• If we wait for everything to develop in a coordinated fashion, we will be
waiting forever...."
I have given them this literature 3 times. Every member of the team and the district. Linda Burkhart has never met Abby. The first time I read this paper I jumped up screaming, " YES YES YES" It was like she had met her and had wrote the paper on her.
How did I handle all this? Dirty looks. Glares. A couple mutterings of "Whatever you don't listen to me anyway."
Then I made her functional skills teacher cry...Totally not my intent. I adore that woman but I was fed up. But, If they are not even going to try to work with ABBY..i,e. INDIVIDUAL EDUCATION PLAN..then there is really no point in her being there. SO I put half days for next year on the table. If she is just there to socialize and get only the bare minimum therapy then it might as well be playtime and respite for me.
The PT refuses any more than 30 minutes a week. Abby's scoliosis curve has gone from 17 degrees to 34 since August. I already doubled her Speech and OT time.
Why is a woman that stops by a couple of times a month in charge of my child's education?? Somethings gotta change. If that means keeping her at home and doing it myself then by God that's what I will do
Monday, March 28, 2011
Dress Up 2 Cure - April 2011
Dress Up 2 Cure - April 2011 Hello all April is fast approaching and April is Autism Awareness month. Rett Syndrome is considered to be the very worst of the Autism Spectrum disorders. It is also the only one with a known gene of cause and the only one totally reversed in mice models in laboratory tests. Many genetic scientists all over the world are working on a cure for Rett Syndrome. Because it it the first Neurodevelopmental disorder reversed in tests it is considered the Rosetta Stone for many other disorders. In other words, a cure for Rett Syndrome could lead to a cure for many other diseases like Alzheimers,Schizophrenia and Parkinsons disease. For more info on this please click here. The reversal in mice was actually found quite by accident and reported in Febuary of 2007. Foor short months after my Abby was diagnosed. Funds for this research are funded almost entirely by private efforts by family,friends and loved ones of the girls and few boys living with this monster (as we call it that stole our children in the night and left us with children trapped in their own bodies with no way to communicate and numerous physical and medical issues). All caused by one tiny gene on the x chromosome that doesn't turn on until our babies are toddlers...stolen from us. Please help us raise funds during the month of April in honor of my precious Abby and thousands and thousands of children just like her. You can donate anytime here or at the link above. For ideas for parties and fundraisers please visit Dress Up 2 Cure's blog here. Just a little FYI...for every 300 people that read this only one will donate. We can only do this and succeed with your help!
Friday, February 11, 2011
Bummerville
Welcome to Bummerville. If you look to your left you will see Rett Syndrome,Seizures,diapers,meds and g-tubes. If you look out the window to the right you will see examples of complete hysteria,exhaustion and little pieces of one Moms heart scattered to and fro.What a sorry sack I am lately huh? I think that I have decided instead of a quarterly nervous breakdown I'll just do it once or twice a week for sh*** and giggles.
Unfortunately Abby's seizures have continued. They arn't bad considering what I have seen and heard of some Rett Girls going through..They are totally breaking my heart but..considering...it could be worse (Please God don't let it get worse)
They have been lasting 1-3 minutes and she recovers quickly. The first few completely wiped her out.
On Monday the school called me while I was doing my --screw it I'm gonna lay in bed all day and feel sorry for myself routine. Abby had just had a cluster.(one after another) She vomited towards the end of one and as they were cleaning her up she went back into it. Her Dad went and got her and brought her home. She came in the door smiling like she just got a get out of jail free card.
That day I called the Neuro's office and had quite a large cow on his nurse over the phone. On Tuesday they called with an EEG appointment followed by a Neuro appointment for Wednesday.
We stayed up pretty late. Midnight for Abby and 3 am for me. Got up just before 5 am. She of course did not have a seizure during the EEG. I however, had to close my head and turn my eyes cause it makes me nauseous.
We met with the Neuro...I tried to fight the meds. Tried to excuse away the episodes as maybe something else. Begged to wait. In defeat I finally had to give in and realize that she is having seizures and I have to help her. Burying my head in the sand, praying,crying and refusing treatment isn't going to stop her from choking to death in the middle of the night of her own vomit.
I hate that Rett Syndrome wins every battle...insert a barrage of profanity here...
Why am I so devastated? For people to say seizures are a part of Rett Syndrome is like that bunghole person that always has to make some stupid comment...like when my dad died...,"He had cancer. It's not like you didn't see this coming."
For the most part if girls with Rett are gonna have seizures it is almost always by 3-4 years of age. We had beat that by 2 years. I had found God again. I just didn't expect it. Not at all. Walking into that room that first night I felt ambushed. Like I walked in to an intruder that had ahold of my baby and kicked me in the face when I walked in the door. Now I have to live with that happening at any time. I feel trapped and held hostage..
Whole lot of I's there huh? Poor me. Imagine all that and being 6. When I was six the only thing I was worried about was ice cream cups after lunch and hoarding all the blue crayons. I could scratch my own feet. Go to the bathroom. Eat. Breath. Walk.Run.Talk.
I may be crazy...OK who am I fooling? I am crazy. I always feel like Abby is being punished for something I did. Some sin from the past that I haven't been forgiven for. For being a bad kid. A bad sister. For making fun or not helping someone. For my years between 16-22. Was I too selfish? Did I bully someone or hurt them terribly?
I sometimes...there's that I again..lay next to her at night. Spooning with her and pray to God that he will take whatever she needs to make her whole from me and give it to her. Weather it's a hormone, a gene, a protein..a thousand genes..take it from me and give it to her. I would be forever grateful to be a blob on the floor than see her have to struggle one more day.
The lack of sleep is what is making this Mom even crazier I think. Per Docs orders I have her in bed with me. I'm up and on watch if she stretches,sighs,makes a noise,turns over. That shudder thing we do after she stretches darn near gives me a heart attack.
Bummerville.
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..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!
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..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, December 18, 2010
It's been a long December
Wow what a month!
So much has happened...financially,emotionally,psychologically. My head has been spinning.
No, we didn't come into money...don't we wish. But we did have some awesome things happen this month that helped us out tremendously.
We had a friend arrange for us to be able to go to the Premier Rett Syndrome Clinic in the country.
We had a Doctor donate her time and services to Abby. Not only did we receive awesome medical care for her we made a friend. A friend who cares and who just happens to be a Rett Syndrome Neurologist! How cool is that?
We have finally started Abby on the Anti Anxiety meds she needs. We are praying that they help her. She is still in the adjustment phase so please keep her in your prayers!
We had a Rett family open their home to strangers so they could receive the best care possible. Again I have made friends. Just 2 short days and I'm pretty sure this lady was somehow separated from me at birth...12 years later. What did she call it?..A brother from another mother. I love you Louise!
We found out that our Abby is in there! Of course I knew but after stomping my feet and stepping on toes for so long even I was beginning to think that it was just me..me being her Mom. Seeing things others never would as I had been told.
Having a child that was once mobile and normal and perfect..who could talk, play, play pretend, eat, feed herself....then have that all stolen in the night.. It is indescribable. Having sat in that office and having her prove that that brain of hers works just fine, that she can, she CAN talk with her eyes. One day we will get her brain to talk to her body again! Hopefully before this Rett Monster takes her from us. Like it has so many poor little Angels this year.
We discovered that we are making a difference. There are people all over the world that read my words,take my advice,use us for examples and watch and learn from Abby's videos. I had no idea and I'm thrilled that I can help from my little desk in the corner of my kitchen.
We had a couple from South Africa donate most of the funds needed to get Abby her iPad. We hope to purchase it soon after Christmas with gift cards she will receive from family. Thank you Cathy and family!
We had people step forward and provide Christmas for us without being asked and out of love. For this I am eternally grateful. Christmas is always such a high stress time of year and knowing that these people helped us because they care and they love us is amazing. I am not one to ever ask. I do not stand in line for vouchers or handouts and I never will. I somehow would have found a way...but it never even became an issue because of these folks. We love you too!!
This week we found out that a My Tobii rep will be flying in to try Abby on the device to get the ball rolling so she can communicate. These devices are beyond expensive and a huge battle with the schools and the insurance. We are ready. I can't imagine what it took to get someone to come here because there is no rep in the area. Someone pulled some major strings I'm sure. Thank you!
We are hoping to get the North Kansas City School District on board with this. They do admit that eye gaze technology is new to them. I'm hoping we can open doors for all children trapped in their bodies!
All our love
Terri and Abby
Tuesday, December 14, 2010
Our favorite Therapy!
Back to my recommendations for therapy for Rett Syndrome.
We have been doing Water Therapy with our OTR/L since Abby was in early intervention. When we transitioned out to the school district they did not provide it and Medicaid won't pay for it..go figure..so we decided to start doing this one out of pocket. We really felt it was too important to give up. We eventually found Autism funding that would pay for 2 sessions a month. Down from our once a week but we take what we can get.
Technically Water therapy is considered OT or Occupational therapy...before anyone bites my head off that's what I have been told. It may be categorized different for you in your area.
What we love about it is that it is so much more than that. Water therapy helps her with body awareness,balance,coordination. It is Physical therapy and Occupational therapy all rolled into one and she LOVES it!
They call our girls Silent Angels and anyone that knows my Abby knows her Silent is broken. She babbles,squeals and sings constantly in her own little language. I often have people ask if she had, "Swim today?" after the pool because her little mouth goes 90-nothing. She is so happy and so verbal.
I have 2 videos today. The first shows Abby doing OT in the water playing catch with a ball.
The second shows her PT part of the Therapy where she walks around the shallow end with weights on her legs. You can tell the awareness it gives her at the end by how fast she climbs the stairs with the weights on!
We have been doing Water Therapy with our OTR/L since Abby was in early intervention. When we transitioned out to the school district they did not provide it and Medicaid won't pay for it..go figure..so we decided to start doing this one out of pocket. We really felt it was too important to give up. We eventually found Autism funding that would pay for 2 sessions a month. Down from our once a week but we take what we can get.
Technically Water therapy is considered OT or Occupational therapy...before anyone bites my head off that's what I have been told. It may be categorized different for you in your area.
What we love about it is that it is so much more than that. Water therapy helps her with body awareness,balance,coordination. It is Physical therapy and Occupational therapy all rolled into one and she LOVES it!
They call our girls Silent Angels and anyone that knows my Abby knows her Silent is broken. She babbles,squeals and sings constantly in her own little language. I often have people ask if she had, "Swim today?" after the pool because her little mouth goes 90-nothing. She is so happy and so verbal.
I have 2 videos today. The first shows Abby doing OT in the water playing catch with a ball.
The second shows her PT part of the Therapy where she walks around the shallow end with weights on her legs. You can tell the awareness it gives her at the end by how fast she climbs the stairs with the weights on!
Monday, December 6, 2010
New York-Uh Wow!
As you know from the post below we went to New York this past weekend and Holy Smokes! Although I was nervous I had no idea what I was getting into!
I spent my childhood and late teenage years in LA and OC California so it's not like I've never been out of the pasture. I grew up in the 70's and 80's and always had this mindset that NY was full of mean,hateful people that were rude,selfish,obnoxious and self absorbed. This could not be further from the truth with what we experienced there.
It's not like I didn't run into any of it of it though. But the incidents were isolated.
When we stepped off the plane in through the gate at La Guarida a lady came right up to us and asked where we needed to go and escorted us to the curbside pick up.
Another RettMom picked us up at curbside and off we went. The one thing that wasn't exactly my favorite about New York was the traffic. Seriously, 24 hours a day it was like playing Extreme Frogger on PCP. No lanes, no turn signals. Absolute insanity on the roads and that was just in Queens.
We stopped in Astoria Park to get a view of the skyline and take a few pics..they really didn't turn out that great and I had only taken a few when a guy road past me on a bike and the hairs on the back of my neck stood up and Stefanie..the RettMom who hosted us yelled,"Get in the car!" He had dumped his bike and was coming towards me. I jumped in and we sped away. So besides the near mugging 10 minutes after I got there it wasn't all that bad!
We stayed up for a few hours and talked and laughed and became instant friends. What an awesome family to take in strangers like that. We had talked before on the Internet and on the phone but to take us in the way they did...forever grateful.
The next morning after about 4 hours sleep I stepped out on the front porch and was immediately greeted by the Sanitation worker with a ,"How you doin Sweetheart?" and a "You have a nice day there."
I'm suck a redneck that I ran in all excited because the Trashman said Hi. They got a good laugh at that one!
My girlfriend from High School that lives on Long Island soon arrived to be our personal assistant,caregiver and chauffeur for the day. She was a pro and I would have been lost without her. Thank you so much Kelley. I love you woman!
Yesterday you got the story from the hospital so I'll pick up from there. I was told that I couldn't come home without having a Hot Dog from a street vendor so I was hoping we could find one. Not a problem since there is about 3 on each side of the street on almost every block. So I had my first Dirty Water War Dog. I was starving. Gotta say not my favorite. I'll order differently next time. Onions on your dog here are onions. There they come in this tomato ketchup watery base. Kinda yukky.
Everyone on the street or sidewalk parted for the wheel chair and they opened doors for us. I don't even get that here. If you go into a place with a wheel chair you are escorted the moment you walk in the door. No questions, no eye rolling. I told my friend that I felt like a celebrity with the treatment we got.
The Metropolitan Museum of Art was next on our list. We didn't have time to go back to Queens so made plans to meet up with our host family at the Museum. We had about an hour and a half to spare so we took a little tour.
We drove through the Bronx and Harlem on our way to Manhattan and took a drive down Park Avenue,5th and Madison. There is no wonder people in New York walk so much. The people on the roads were INSANE and I'm pretty sure most of them couldn't have possibly ever taken a drivers test.
If the police actually ticketed every driver that didn't use a turn signal, cut someone off or every person that jay walked I'm pretty sure we could settle the National Deficit in a week or so. So not kidding.
I spent my childhood and late teenage years in LA and OC California so it's not like I've never been out of the pasture. I grew up in the 70's and 80's and always had this mindset that NY was full of mean,hateful people that were rude,selfish,obnoxious and self absorbed. This could not be further from the truth with what we experienced there.
It's not like I didn't run into any of it of it though. But the incidents were isolated.
When we stepped off the plane in through the gate at La Guarida a lady came right up to us and asked where we needed to go and escorted us to the curbside pick up.
Another RettMom picked us up at curbside and off we went. The one thing that wasn't exactly my favorite about New York was the traffic. Seriously, 24 hours a day it was like playing Extreme Frogger on PCP. No lanes, no turn signals. Absolute insanity on the roads and that was just in Queens.
We stopped in Astoria Park to get a view of the skyline and take a few pics..they really didn't turn out that great and I had only taken a few when a guy road past me on a bike and the hairs on the back of my neck stood up and Stefanie..the RettMom who hosted us yelled,"Get in the car!" He had dumped his bike and was coming towards me. I jumped in and we sped away. So besides the near mugging 10 minutes after I got there it wasn't all that bad!
We stayed up for a few hours and talked and laughed and became instant friends. What an awesome family to take in strangers like that. We had talked before on the Internet and on the phone but to take us in the way they did...forever grateful.
The next morning after about 4 hours sleep I stepped out on the front porch and was immediately greeted by the Sanitation worker with a ,"How you doin Sweetheart?" and a "You have a nice day there."
I'm suck a redneck that I ran in all excited because the Trashman said Hi. They got a good laugh at that one!
My girlfriend from High School that lives on Long Island soon arrived to be our personal assistant,caregiver and chauffeur for the day. She was a pro and I would have been lost without her. Thank you so much Kelley. I love you woman!
Yesterday you got the story from the hospital so I'll pick up from there. I was told that I couldn't come home without having a Hot Dog from a street vendor so I was hoping we could find one. Not a problem since there is about 3 on each side of the street on almost every block. So I had my first Dirty Water War Dog. I was starving. Gotta say not my favorite. I'll order differently next time. Onions on your dog here are onions. There they come in this tomato ketchup watery base. Kinda yukky.
Everyone on the street or sidewalk parted for the wheel chair and they opened doors for us. I don't even get that here. If you go into a place with a wheel chair you are escorted the moment you walk in the door. No questions, no eye rolling. I told my friend that I felt like a celebrity with the treatment we got.
The Metropolitan Museum of Art was next on our list. We didn't have time to go back to Queens so made plans to meet up with our host family at the Museum. We had about an hour and a half to spare so we took a little tour.
We drove through the Bronx and Harlem on our way to Manhattan and took a drive down Park Avenue,5th and Madison. There is no wonder people in New York walk so much. The people on the roads were INSANE and I'm pretty sure most of them couldn't have possibly ever taken a drivers test.
If the police actually ticketed every driver that didn't use a turn signal, cut someone off or every person that jay walked I'm pretty sure we could settle the National Deficit in a week or so. So not kidding.
We were treated to what is called Rett at the Met. An evening where Rett families get a private guided tour and dinner afterwards. We met families that I have talked to or seen pictures of for years. We were treated like royalty. That place was incredible. The way their staff attended to us was amazing and so personal. He saw so many things and if alone I would have spent the entire day there. We even saw Hugh Jackman! Pretty cool! If I could I would go there once a week if I lived in New York and disappear into light and art and color and history. Unforgettable! The only thing missing was my new found sister Stefanie who wasn't able to make it because her daughter was ill.
The next morning we had a flight out at 1120. I wanted to get there pretty early because I heard that LaGuardia was a nightmare. We woke up late and pretty much had to stuff bags with what would fit and haul butt to the airport. I was sure we were going to miss our plane and my stress level was through the roof!
When I lifted Abby out of the car and into her wheelchair a security guard met me at the curb and asked what airline. He then took us to the front of the line at the Frontier Airlines desk and they moved us to the front row immediately. The same guard then told us to follow him as he walked us through security to the front of the line. That line had to be 2 blocks long. Everyone parted and not one person said a thing. I was allowed to stay with my daughter while my bags went through and her chair was patted down. They were so careful and attentive with her. I on the other hand got the full patdown you've been hearing about on the news. They were gentle and kind about it but I had not gone through the xray so it was procedure. The security guard waited for us so he could escort us to our gate. He told the gate that we would need assistance on and off the plane and shook my hand and quietly walked away.
We were the first to board and the Stewardesses carried our bags, took care of the chair and asked if we were comfortable and had everything we needed before they let anyone else board. I was so shocked. This is the way people should be treated. Everywhere. I was amazed.
When we got off the plane they asked us to wait for others to deplane so as not to feel rushed. When we got off there were 3 people waiting from Frontier waiting. One with the chair and 2 to help with the bags and anything else we may have needed. When I put Abby in the chair I turned to get my bags to find the Pilot was holding all 4 of them for us. THE PILOT! He handed them to us with a smile and turned back to his plane. Incredible!
The people from Frontier escorted us clear out of the gate to the waiting are and asked if their was anything else we needed before they turned away. I will never fly another airline! Absolutely the best service ever!
And to top it all off. Someone else paid for our tickets with their airline miles. When the airline called to confirm because they were in someone elses names and heard our story they comped the tickets. Round trip, non stop and they comped them!
Thank you New York, The Metropolitan Museum of Art and Frontier Airlines for making this a trip we will never forget!
Sunday, December 5, 2010
Abby , Me and Reality
Wow what a weekend. Just be prepared that this post may go on forever.
Since March the Rett Monster has been rearing it's ugly head around here and we have been putting Abby through so many tests and procedures.
Her stomach was the first issue. Abby has some pretty severe GI issues that are common to Rett...The one thing I think we, as Rett parents hate to hear is that,"It's Rett.". We don't care if it's Rett. Fix it. Now! I think...no I really feel that if a girl has Rett so many things are poo'd off or ignored that could be dealt with and fixed. These are the same Dr's that diagnosed our daughters and tell us to take them home and make them comfortable. When we bring them back in they treat us as if we are bringing in that lame dog we picked up at the pound. We knew it would have problems. Why do we keep bothering them with this?
I will say that we don't get this from Abby's Pediatrician. Not at all. But we do get it from the specialists here. I think the Neuro knows Rett but is basically an Epilepsy doc. ER's,Ortho,Surgeons,GI's. just don't know Rett and between us and her Ped and a friend we came to the realization that she needed and the Pediatrician needed a Rett doctor for Abby.
In the last few months Abby had also started having sleep issues again, She was having tremors,night terrors,waking in the night. She was having severe pain and panic attacks during the day. I have always fought off any kind of neurological medicine or anxiety medicine for several reasons. First out of the fight I have in me that I can help her. I can fix it. I almost killed her with that when she stopped eating. I sometimes forget that I am fighting an invisible monster here. Rett Moms cant kiss the boo boo's and send them on their way. The hurt that comes from this is unimaginable for those who don't deal with it.
Her breathing issues needed to be addressed. The Apraxia that stops her from taking that next breath can be anxiety induced too and I needed to face that. Having to leave her at home or not being able to participate in any kind of life because it would be too stressful for her was letting Rett win and I can't do that anymore. I needed to get off my Homeopathic hippie bandwagon because I wasn't helping her and that is my ONLY mission in life.
Through a friend I was introduced to a Doctor in New York. Her name is Aleksandra Djukic. It started with my friend emailing her a question for me when a GI here put Abby on a Neuropathy med to help with her GI issues. Within a few days we had plans to come to New York to see her and the paperwork and record gathering began.
A few days before the appointment I sent Dr Djukic (Sasha) a link to this blog and Abby's videos. She sent a little note back that she had seen these videos before and couldn't wait to meet "The Princess"
I will save the what I think about New York blog for later but now on to Sasha.
To say this woman is amazing would be the understatement of the millennium. We were there about 15 seconds when she came rushing out to the waiting area to greet Abby. She talked to Abby, she hugged her, she kissed her. When we went back to the office she explained to us that she had been using Abby's videos in her lectures about how intelligent Rettgirls are for 2 years. She hadn't realized that this was the same child she was about to see until a few days before we arrived. I was stunned.
She explained Rett to us in a way that even I never actually understood. She explained treatment and the coming cure in a way that I never understood. Our cure is coming! I had always been skeptical. Hopeful but careful. It is coming!
She tested Abby on a My Tobii device. I had to put my face in the back of Abby's head so I didn't see anything that was going on until I got the video by email when I got home. My daughter is brilliant. Her brain works so much faster than I thought it did. Her memory and concentration and comprehension are there. Right there! I saw things that I think Sasha didn't even see. When she would put Dora on the screen and put a different picture up Abby would look where Dora was before...she is her favorite character. I could go on all day about this one. I have never really fought for something like a My Tobii before because they are so incredibly expensive and I am apprehensive about anything that I think she can't use or would fail at. Abby must have this device and the fight is on!
We decided to put Abby on an Anti Anxiety/Depression med. It's time. I myself have suffered from depression and anxiety since a child and I don't have Rett. Meds help and I should have realized that a long time ago. I have problems living in my own brain and body and I have a voice and a body that works! Imagine how my Abby must feel!
We doubled her Melatonin for sleep and may even triple it. Abby slept better last night than she has in 2 years.
We are taking her off Miralax and putting her on a gentle baby motility drug because Abby's little body obviously can't handle Miralax.
We are changing up her therapies. If I can't get more at school I will do it myself at home. Use it or loose it. Neurons that fire together grow together, branch and work!
Now for the pics. I could have done the standard few pics and a sentence blog but it would have never done this visit,this doctor and her hospital justice. I am forever grateful for everyone that made this happen!
Sasha is so proud of her Princess!
Wow! So happy! Off for a tour of Manhattan then dinner with friends and a tour of the Museum of Art!
Since March the Rett Monster has been rearing it's ugly head around here and we have been putting Abby through so many tests and procedures.
Her stomach was the first issue. Abby has some pretty severe GI issues that are common to Rett...The one thing I think we, as Rett parents hate to hear is that,"It's Rett.". We don't care if it's Rett. Fix it. Now! I think...no I really feel that if a girl has Rett so many things are poo'd off or ignored that could be dealt with and fixed. These are the same Dr's that diagnosed our daughters and tell us to take them home and make them comfortable. When we bring them back in they treat us as if we are bringing in that lame dog we picked up at the pound. We knew it would have problems. Why do we keep bothering them with this?
I will say that we don't get this from Abby's Pediatrician. Not at all. But we do get it from the specialists here. I think the Neuro knows Rett but is basically an Epilepsy doc. ER's,Ortho,Surgeons,GI's. just don't know Rett and between us and her Ped and a friend we came to the realization that she needed and the Pediatrician needed a Rett doctor for Abby.
In the last few months Abby had also started having sleep issues again, She was having tremors,night terrors,waking in the night. She was having severe pain and panic attacks during the day. I have always fought off any kind of neurological medicine or anxiety medicine for several reasons. First out of the fight I have in me that I can help her. I can fix it. I almost killed her with that when she stopped eating. I sometimes forget that I am fighting an invisible monster here. Rett Moms cant kiss the boo boo's and send them on their way. The hurt that comes from this is unimaginable for those who don't deal with it.
Her breathing issues needed to be addressed. The Apraxia that stops her from taking that next breath can be anxiety induced too and I needed to face that. Having to leave her at home or not being able to participate in any kind of life because it would be too stressful for her was letting Rett win and I can't do that anymore. I needed to get off my Homeopathic hippie bandwagon because I wasn't helping her and that is my ONLY mission in life.
Through a friend I was introduced to a Doctor in New York. Her name is Aleksandra Djukic. It started with my friend emailing her a question for me when a GI here put Abby on a Neuropathy med to help with her GI issues. Within a few days we had plans to come to New York to see her and the paperwork and record gathering began.
A few days before the appointment I sent Dr Djukic (Sasha) a link to this blog and Abby's videos. She sent a little note back that she had seen these videos before and couldn't wait to meet "The Princess"
I will save the what I think about New York blog for later but now on to Sasha.
To say this woman is amazing would be the understatement of the millennium. We were there about 15 seconds when she came rushing out to the waiting area to greet Abby. She talked to Abby, she hugged her, she kissed her. When we went back to the office she explained to us that she had been using Abby's videos in her lectures about how intelligent Rettgirls are for 2 years. She hadn't realized that this was the same child she was about to see until a few days before we arrived. I was stunned.
She explained Rett to us in a way that even I never actually understood. She explained treatment and the coming cure in a way that I never understood. Our cure is coming! I had always been skeptical. Hopeful but careful. It is coming!
She tested Abby on a My Tobii device. I had to put my face in the back of Abby's head so I didn't see anything that was going on until I got the video by email when I got home. My daughter is brilliant. Her brain works so much faster than I thought it did. Her memory and concentration and comprehension are there. Right there! I saw things that I think Sasha didn't even see. When she would put Dora on the screen and put a different picture up Abby would look where Dora was before...she is her favorite character. I could go on all day about this one. I have never really fought for something like a My Tobii before because they are so incredibly expensive and I am apprehensive about anything that I think she can't use or would fail at. Abby must have this device and the fight is on!
We decided to put Abby on an Anti Anxiety/Depression med. It's time. I myself have suffered from depression and anxiety since a child and I don't have Rett. Meds help and I should have realized that a long time ago. I have problems living in my own brain and body and I have a voice and a body that works! Imagine how my Abby must feel!
We doubled her Melatonin for sleep and may even triple it. Abby slept better last night than she has in 2 years.
We are taking her off Miralax and putting her on a gentle baby motility drug because Abby's little body obviously can't handle Miralax.
We are changing up her therapies. If I can't get more at school I will do it myself at home. Use it or loose it. Neurons that fire together grow together, branch and work!
Now for the pics. I could have done the standard few pics and a sentence blog but it would have never done this visit,this doctor and her hospital justice. I am forever grateful for everyone that made this happen!
Me and Abby outside of Montefiore Hospital. That's us to the left!
One posed pic and off to work!
Studly Mcmuffin pic walking with minimal assist!
Sasha is so proud of her Princess! Wow! So happy! Off for a tour of Manhattan then dinner with friends and a tour of the Museum of Art!Stay tuned!
Saturday, November 20, 2010
The Importance of Therapies in Rett Syndrome
I know that there are many new parents that read our blog. What I mean by new parents are the parents of newly diagnosed girls. Because we had no where to go and almost no personal, from a parents point of view when we were diagnosed I occasionally like to put out informative information in between all my whining and bragging.
I just cringe when I think of the info that was out there for us not so long ago and it was all very doom and gloom and no happiness or future to it. I have been told several times that Abby is incredible as far as Rett Syndrome girls go. I truly believe it is because of my persistence and sometimes annoyance to her docs,caregivers and therapists. I have always had the move it or lose it attitude when it comes to Rett Syndrome and I totally still believe that.
I have,over the last 4 years met many many families and many many girls and I can tell you that Rett Syndrome hits every girl differently. I have met wonderful little girls who's bodies just won't work for them at all. I have met girls who walk,talk,run and have conversations while wringing their tiny hands. These girls are few and far between and mine is not one of them.
Early,very early, in our diagnosis I had one of the wisest and most experienced RettMoms there are tell me, and I quote,"Don't spend her entire life in therapies trying to fix her because it just won't work. Let her enjoy what life she has." Love ya lady but Bullcrap! Some of Abby's favorite things to do in the world are therapies and with the therapy through play attitude that everyone has taken on it is not as much work as it used to be. So I am going to go over the recommended therapies for Rett Syndrome. How we do those therapies and I am going to try very hard to get as much video as I can on each in the next few weeks. Abby's school doesn't allow video taken in her school so for those therapies I may take new video or use some we already have.
The Importance of Therapies in Rett Syndrome Repetitive therapies help dendrites form more connections with other neurons (neuronal plasticity) In Dr. Djukic's words, "Neurons that fire together wire together." Therapies that have been demonstrated to help individuals to access their environment include:
Occupational therapy
Physical therapy
Hippotherapy
Aquatherapy
Music therapy
Communication therapy
Speech therapy
Applied behavioral therapy
Therapies help neurons to create new connections . New connections help to increase motor skills. Coordination, balance, and motivation to try new tasks are proven benefits. Therapies contribute to an enriched environment for individuals with Rett syndrome No loss may be progress - Therapies stimulate the neurons and they are helpful. Unfortunately, when girls are in transition and struggling with multiple physical issues, progress is hard to see. Goals are not met, and services are lost. It is important to help other professionals understand the dynamics of the syndrome and the need to keep moving and stimulating. Proper instruction and a plan between teacher, doctors, and treating therapists are valuable.
So here we are. Words from one of the best Rett Neurologists in America. Today I will start with Hippotherapy. Don't let the name fool you. She doesn't play with or ride Hippos and I would be too busy having a heart attack to video it for you if she did. Hippotherapy is Horseback Therapy. Many will try to influence you not to do this one and I can tell you that it is the most valuable thing we have in our arsenal as far as regaining balance,trunk control and strengthening her core muscles. Many many areas have programs that are free of charge for the disabled or a local Horse association that will split the costs with the family. Ours charges $40.00 a session and a local Horse Association (The American Royal) pays for half of that. So for a 6 week session we pay $120.00 When we first started Hippotherapy I was so scared for her because I am the biggest chicken in the world when it comes to horses. They absolutely terrify me and I have only been on a horse twice in 40 years. Enough for me. The first few times Abby got on she would not even hold herself up on the horse so they would ride with her laying on her back or laying on her stomach. By the 4th week she was sitting up on her own.
What does Hippotherapy do? Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada. Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities. Why the Horse? The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.
So the video..I don't have great video but I do have some so here ya go..Here she is last Thursday winning an egg race. There is ALWAYS a person on each side and another leading the horse.
I just cringe when I think of the info that was out there for us not so long ago and it was all very doom and gloom and no happiness or future to it. I have been told several times that Abby is incredible as far as Rett Syndrome girls go. I truly believe it is because of my persistence and sometimes annoyance to her docs,caregivers and therapists. I have always had the move it or lose it attitude when it comes to Rett Syndrome and I totally still believe that.
I have,over the last 4 years met many many families and many many girls and I can tell you that Rett Syndrome hits every girl differently. I have met wonderful little girls who's bodies just won't work for them at all. I have met girls who walk,talk,run and have conversations while wringing their tiny hands. These girls are few and far between and mine is not one of them.
Early,very early, in our diagnosis I had one of the wisest and most experienced RettMoms there are tell me, and I quote,"Don't spend her entire life in therapies trying to fix her because it just won't work. Let her enjoy what life she has." Love ya lady but Bullcrap! Some of Abby's favorite things to do in the world are therapies and with the therapy through play attitude that everyone has taken on it is not as much work as it used to be. So I am going to go over the recommended therapies for Rett Syndrome. How we do those therapies and I am going to try very hard to get as much video as I can on each in the next few weeks. Abby's school doesn't allow video taken in her school so for those therapies I may take new video or use some we already have.
The Importance of Therapies in Rett Syndrome Repetitive therapies help dendrites form more connections with other neurons (neuronal plasticity) In Dr. Djukic's words, "Neurons that fire together wire together." Therapies that have been demonstrated to help individuals to access their environment include:
Occupational therapy
Physical therapy
Hippotherapy
Aquatherapy
Music therapy
Communication therapy
Speech therapy
Applied behavioral therapy
Therapies help neurons to create new connections . New connections help to increase motor skills. Coordination, balance, and motivation to try new tasks are proven benefits. Therapies contribute to an enriched environment for individuals with Rett syndrome No loss may be progress - Therapies stimulate the neurons and they are helpful. Unfortunately, when girls are in transition and struggling with multiple physical issues, progress is hard to see. Goals are not met, and services are lost. It is important to help other professionals understand the dynamics of the syndrome and the need to keep moving and stimulating. Proper instruction and a plan between teacher, doctors, and treating therapists are valuable.
So here we are. Words from one of the best Rett Neurologists in America. Today I will start with Hippotherapy. Don't let the name fool you. She doesn't play with or ride Hippos and I would be too busy having a heart attack to video it for you if she did. Hippotherapy is Horseback Therapy. Many will try to influence you not to do this one and I can tell you that it is the most valuable thing we have in our arsenal as far as regaining balance,trunk control and strengthening her core muscles. Many many areas have programs that are free of charge for the disabled or a local Horse association that will split the costs with the family. Ours charges $40.00 a session and a local Horse Association (The American Royal) pays for half of that. So for a 6 week session we pay $120.00 When we first started Hippotherapy I was so scared for her because I am the biggest chicken in the world when it comes to horses. They absolutely terrify me and I have only been on a horse twice in 40 years. Enough for me. The first few times Abby got on she would not even hold herself up on the horse so they would ride with her laying on her back or laying on her stomach. By the 4th week she was sitting up on her own.
What does Hippotherapy do? Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada. Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities. Why the Horse? The horse's walk provides sensory input through movement which is variable, rhythmic and repetitive. The resultant movement responses in the client are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the client, then use this movement in combination with other clinical treatments to achieve desired results. Clients respond enthusiastically to this enjoyable learning experience in a natural setting. Physically, hippotherapy can improve balance, posture, mobility and function. Hippotherapy may also affect psychological, cognitive, behavioral and communication functions for clients of all ages. Clients who may benefit from hippotherapy can have a variety of diagnoses: examples include Cerebral Palsy, Multiple Sclerosis, Developmental Delay, Traumatic Brain Injury, Stroke, Autism and Learning or Language Disabilities. However, hippotherapy is not for every client. Each potential client must be evaluated on an individual basis by specially trained health professionals.
So the video..I don't have great video but I do have some so here ya go..Here she is last Thursday winning an egg race. There is ALWAYS a person on each side and another leading the horse.
Thursday, November 11, 2010
A day in the life of a RettMom.
A few years ago another Mom posted a 'What it's like blog' on Myspace and I remember thinking things weren't so bad for us and I felt bad for her. Abby slept through the night. She walked, she ran. She could still sign and had a few words. She was eating like a frat boy. I thanked my lucky stars that Rett Syndrome didn't hit us like it did other girls...little did I know what was coming. I had no idea that sometimes it takes years for everything to hit.Most days there is so much that I can't remember it. I have been thinking about this post for days and the last few have been a pretty much the norm. So this is for all of my husbands friends who complain that I don't work. For my family who spends hundreds of dollars a week at restaurants and invites everyone but me and my daughter. For those who blame my laziness on our generic toilet paper and meals cooked in bulk and eaten till their gone. Usually consisting of a hamburger or tuna concoction. Man I hate hamburger and tuna!
Tuesday 230 pm. I pick up Abby from school early to go get labs done. We are finally checking EVERYTHING to try to make her as comfortable as possible in her little body that does nothing she wants it to. Looking for any chemical reason she vomits, gets impacted,and or has constant diarrhea. Anything that can help us get her on the right meds so she stops having her tremors and stops breathing. Yes stops breathing.
Earlier this year they discovered.."they" being the medical world..that Rettgirls don't hold their breath because they can. They're brains are actually not telling them to take that next breath in order. For Abby this happens about 5 times a minute. 5 X 60 is 300. 300 X 13 hours a day that she is awake is 3900 times per day. Not to count the apnea she has in her sleep. Usually about 130-160 minutes of non breathing over a 9 hour period. Is it no wonder I do not sleep?
At the doctors office we bag her..I will not catheterize my daughter unless there is a dire need. Never again. We wait for an hour for her to go.
We take that sample to the hospital lab where we wait for and hour and a half to get called back. When we finally do the tech fishes for veins until I stop the process. She obviously doesn't know what she's doing and my daughter is not a pin cushion.
By this time Abby has missed her afternoon tube feeding and is hysterical with hunger so she screams at me all the way home in her language that only she understands and I cry right along with her.
I get her home and put her in her chair for her feeding. After I have plugged the tube into her stomach I take a few minutes to tell her father about the day. When I go back to sit with her during her feeding..to make sure she doesn't vomit or retch and aspirate she is slumped down, head on her chest..snoring. 3 hours before her normal bed time. I too am exhausted but I have to wait another 3 hours before I can give her her night time meds. So I turn on the monitor and go about doing all my household responsibilities and preparing her school bag and meds for later that night and first thing in the morning.
At her normal bed time I give her her 3 meds and accidentally wake her up. Oh man I didn't mean to. Now it's party time. She's had a nap and is so thrilled to see me. She kicks her six year old legs like an infant while constantly gnawing on her folded, bent and clasped hands. Giggling away. Happy as she can be and wide awake.
I finally get her back down about 1am. Deciding that I will not send her to school the next day on no sleep and that we will go back to the lab to try again. I sit on her floor with my back against her dresser, knobs hitting me in the back till I hear her breathing evenly and waiting for her little hands to stop moving so I know she is actually asleep.
I wake up 2 hours later. Sideways on her floor because she is whining and whimpering. It's cold and she has kicked her blanket off. Since she can't use her hands she cannot reach down and pull it back up. I crawl to my feet and tuck her back in and kiss her pretty little head.
2 hours go by and the blankets are off again. She is crying and cussing me in her own little language. Now her bed is wet. 5 am. No way that I can change her and her bed at this time without her fully waking up so her and I head off to my bed after a quick change of diaper and pajamas and a foaming bath in a pump wipe down. We don't wake her father. He doesn't even try to sleep in our room anymore. He's down on the couch in the living room.
Ok 530. I can still get a few hours of sleep before the labs start all over again. Think again!
Abby's 18 year old brothers alarms start going off at 6 am in the room next to us. He has 5 alarms that go off because he is IMPOSSIBLE to wake up in the morning and is so close to getting dropped for chronic tardiness and absences that we have to make sure he misses not even one more day. Not one more class or he will not graduate.
By 630 she is up. Smiling at me and licking my face-her way of kissing me. She is trying to raise herself up and is in full party mode. Ecstatic that she is in bed with Mommy and ready to start her day.
I turn on the TV for her while I change her bedding and run her bath. Hoping her brother has left us some hot water. Careful not to start the washer until I have her cleaned up.
I carry her to the bathroom..sideways because our bathroom was apparently built for no more than one tiny little pixie person to be in at a time and lower her into the tub..carefully as to not pull my back out again.
I take her back into my room so to not lay her down on her cold plastic hospital bed mattress and dry and dress her. She smiles at me while I take 20 minutes to wrestle her into her clothes,braces and shoes with no help from her. She can only lay there and smile.
I take her downstairs. One step at a time. She is 4 feet tall and 44 pounds of hanging weight. I turn on Nick Jr and start the feed and medicate process once again. An hour later we are off to the hospital . Ont he way there I steal a glance in the mirror and realize I look like something from the movie The Ring. I run my fingers through my hair and grab a baby wipe out of her bag to wash my face.
At the hospital we sign in and lucky us no one can find the paperwork from the afternoon before. The other tech had said she would leave it and all the counted and tagged tubes in a bag for the morning tech. No one can find them. So we wait for 2 hours in the waiting room. Annoyed,exhausted. At least I am. Abby's happy as a clam singing and screaming for what she thinks is people all there to listen to her scream, giggle and break into hysterics. At least it's happy hysterics this time.
The check in lady can tell that I'm about to lose it..she can tell because she knows us by face and name. Not because we are friends but because she has seen us so many times.
She finally goes and gets the tech and they take us back to the lab and sit us in the strap down chair. After stupid me has carried Abby all the way through because I left her wheelchair in the car thinking we would be in and out. You'd think I would have learned by now. My back is killing me at this point.
So we sit as she leaves the room for half an hour because she has to retype all the labels for the 9 tubes of blood they are about to take from my daughter. Luckily she hits the vein the first time and it is over with quickly. I watch Abby's face to make sure she doesn't go pale or pass out.
Yeah we're done! I carry Abby back through the hospital and out to our 12 year old van and lean her up, pinning her between my leg and the van while I catch my breath before I lift her up into her car seat. Again with no help from her. I am so exhausted and fed up by then I just want to pull over and cry...or pass out. But I can't because I'm smiling and laughing so hard. Abby has the hiccups. With each jump of her chest and squeak from her mouth she bursts into uncontrollable laughter.
I love that girl.
I drive us home and get her settled on the couch while I grab a sandwich. It's 230 and the first time I've eaten since the afternoon before.
24 hours in a day in my life. How was yours?
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...ever
Here she is as the judges came over and took a look at her and talked to her for a bit
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!
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 bitThese 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!
Subscribe to:
Posts (Atom)