Wednesday, April 29, 2009

Daddy's girl. Pllhh!

Oh boy. This little girl. She is Daddy's baby. I absolutely do not exist except to perform my duties when he is home. She is almost a snot about it. This first video I took as soon as she got home from school. We usually hook her right up to her tube but she was slapping at me and putting her hand in her mouth so we wanted to give her a few bites to start. So here she is eating and flirting with her Papa.

This next video I got right after I dropped her brother off at a concert. Her and her Papa are watching The Backyardigans and telling stories and guessing what will happen next. This is pretty normal for the interaction we have with her but we rarely get it on video. Once again. Papa is the most awesome thing ever!

Whatever. Pllhh!

Monday, April 27, 2009

Now wait a Wiggly minute!

Yipee Yahoo Hot Potato!
That's right THE WIGGLES are coming to town. I was watching The Wiggles with Abby the other morning and a commercial comes on saying tickets are on sale now for August 1st. What? Whenever I get tickets for a concert I am in line early the morning tickets go on sale. How did I miss this? Is it even possible she won't be in the first row?
So I jumped up and ran, yes ran, to my computer to hit up Ticketmaster. I banged my shin on the doorway and entertainment center on the way.
There are two shows that day. I searched for best available for show one and got nosebleeds so I searched show 2 and we got row L. Yikes that's half way back!
Ok quit yer laughing.
My little girl is Wiggly CRAZY! They know all, they cure all and they are all.
There is this thing with The Wiggles and Rett Syndrome girls. I don't know what it is.
When Abby had her two week stint in the hospital there was only two things that made everything ok. Dr H and The Wiggles.
When Abby was being poked and prodded they calmed her down. When she came out of surgery and the team was wheeling her down the hall on the gurney and she was screaming and writhing in pain I was an asolute mess. When they put her in her bed she looked up at the never ending loop of Wiggles we had going and she laid her head on her bear and sighed with tears running down her face.....she smiled.
When we can't figure out what's wrong and no position changes,feeding or medication will fix it...we know what to do.
I am so excited for her I am about to burst myself!!!!!!!
Now how to get her in to meet them?????

This is her face this morning when they came on tv.

Friday, April 24, 2009

So happy

You'll have to excuse Miss Orneriness's hair this morning. I was in the kitchen preparing her breakfast and I could hear her yakking away like she does when she is watching PBS in the morning. So I grabbed my little camera and tried to catch a bit of it. She just babbles and talks away whether someone is with her or not. If someone is with her she just yaks at them then looks at them for a response or gets an I have spoken look on her face.

Now her being her she immediately toned it down when I turned on the camera then stopped altogether. Nonetheless here she is...In all her gorgeous blue eyed, messed up hair glory.


Monday, April 20, 2009

Sticks and stones and a fathers love.

I have struggled since last night with how to say what I want to say in this blog entry and have decided to just say it. I must say that it is not at all my intention to offend or hurt anyone.
Last night my husband, my daughter and I stopped at a local restaurant to have dinner while out and about shopping.
Upon entering the restaurant there was a beautiful little blond haired, blue eyed girl with a fabulous ribbon in her hair. She let me know that she was four years old and that it was her birthday. I told her happy birthday and looked at my own four year old who cannot speak or communicate and tried my best to smile and turn my focus to her and her smiling face.
While we were enjoying our dinner my own beautiful, blond haired blue eyed girl did her best to tease me. She ignored me and all eyes and flirting were for Daddy only. She was having a great time messing with Mommy.
It became apparent during dinner that this family was just behind us and one table over. I had my back to them but my husband did not. The little girl informed the waiter that it was her birthday and he disappeared around the corner. Before too long the entire wait staff came screaming around the corner. Hooting and hollering and singing as loud as they could to this gorgeous little princess who was now standing in her chair basking in the glory of her day. As they do at this restaurant they called attention to her and made a large fuss while they sang. I at this point was comforting my own daughter who had gone into tremors from being startled and scared and holding on to me for dear life while assuring her everything was ok.
The little girl with all eyes on her then was asked to tell her 2 favorite jokes. Her first one went off without a hitch.....Why did the chicken cross the road? It was very cute. She then told the old "What? Chicken Butt!" joke except she said chicken bucket. I giggled. Then I heard someone at the table ask why she said chicken bucket. Then as clear as day I heard a female giggle and say,
"Because she's retarded"
Ok now the room is spinning. I am attempting to sign the check and breath at the same time. My husband is telling me the tip amount and I am thinking I may pass out. I start to dig in my purse and realize I am out of the cards that I hand out to the curious and the ignorant and curse myself for not asking my friend to reorder. I am also at this point not wanting to ruin the little girls birthday.
I managed to stand and leave the restaurant as fast as I could leaving my husband and daughter inside. By the time I got in my van I was sobbing and hyperventilating. How dare they? I screamed at my husband. I could barely breath. Then I saw him turn and walk back into the restaurant. A card in his hand. I just sat there hoping he didn't ruin that girls birthday or get his butt kicked.
My husband,whom I complain about quite frequently I must admit, very calmly went back into the restaurant and asked to speak to the male seated next to the woman who said the word. He and a male across from him both stood up and walked with my husband. They instantly knew as soon as my husband handed them the card and told them how they should really pay attention to the kind of language thrown around at their table. They didn't ask for forgiveness or even apologize. The seemed confused because,"Nobody meant anything by it."
Wow. My husband told them how fortunate they were that they had such a beautiful girl who could stand in her chair and tell jokes because his daughter probably never will and that his wife was in his car sobbing because they used this word they way they did with this perfect child. Then he turned around and came back outside.
I was amazed and so proud of him I cannot even explain it. When it comes to our daughter we never ever use that term. Yes she is delayed. Because of her Rett Syndrome her growth has been retarded. Her ability to function on a normal or typical level has been retarded, impeded,delayed. She is delayed mentally and physically. But only in the way she is limited in her functioning. She cannot speak, use her hands ,sign or walk independently. She has a feeding tube and has difficulty breathing and swallowing. BUT, She is in no way shape or form RETARDED in the slang form people have started to use this in.
The very reason society has banned this word in the medical and social community is because people use it to describe silliness or stupidity. An idiot or a moron. My daughter in not stupid and neither was this little girl.
When you walk into a place of business or anyplace for that matter and it says NO PROFANITY on the door this word should be on the top of the list. It is absolutely the most offensive thing I can think of. And I had to say it. It is my hope that this family passes on this story every time they hear the word again.
I thought this would be a good opportunity to provide a link to this video of a speech by a young man with a sister he loves very very much. It touches my heart every time I see it. You can see it by clicking here:
Peace and love

Tuesday, April 14, 2009


Abby had her swim therapy with the greatest OT in the whole world. I wanted to get much more but Abby was aware of the camera and would pull her usual non compliance act when she saw it. This does show her trying and kicking. Her legs look 5 feet long under the water.I will get giggle swimmer girl on film!!!! Just not today.

When Abby got home from school today there was a note that she was especially coherant and consistent with her communication and with her switch use today. We always always get more out of Abby on a swim day.



Monday, April 13, 2009

Easter girl

Hello. I hope everyone had a great Easter. Here is Abby with her Easter shades and mask. She was none too thrilled. No more masks for her.

We played dress up and make up. This is Abby's pose to,"Show me how pretty you are with your make up on!"

daddy was telling her she was so pretty.

She was so excited. She loves to play dress up. She was very vocal yesterday and her Babi(Grandma) got to hear her on the phone and went nuts. It was awesome.
Here is her Look at my Easter Dress pose. She is so stinking cute I dont know how I live with it!

Tuesday, April 7, 2009

Daddy's girl

Daddy was off work today and Abby was Daddy's lil baby every minute today after we got home from the seating clinic. Flirting her head off with her Papa.

Oh Daddy is so funny. Actually I got this right before she slapped him silly.The most comfortable place in the world for her while she is eating. And necessary since we have to stick a pillow between her legs and keep her held down so she doesn't take off. She could care less that she has a feeding tube. And she loves Childrens Mercy! Although the doctors in the ER arn't as flirty with her. Check em in and ship em out. I swear she thinks the place is Disneyland.

Saturday, April 4, 2009

Over the river and through the woods

This morning we got up early and drove down to Great Grandma and Grandpa's farm about 2 and a half hours south. I took a few good pics but you'll have to go to my facebook for those. Ha! Abby wanted to take Great Grandma for a walk as soon as we got thereI know right?Abby is play pouting because there is no tv. God forbid.It's ok Mommy I still love you!This was Abby's Daddy(I know) before we left this morningAnd this was Abby's Daddy when we got home tonight.
It took her a bit to realize it was actaually her Daddy I think. Then she kept slapping him in the head. Unfortunately I had already taken the sd card out of the camera.