Wednesday, February 25, 2009

Working on it

Looks like it's time for your weekly dose of cuteness! Abby went to the Neuro yesterday and is doing really good. The doc suggested something I hadn't realized. I have really been perplexed on why Abby has been a poor eater and then why she just stopped and refused almost alltogether. He looked right at me and told me it is because she can. These girls live trapped in these tiny little bodies with no free will or ability and they will do WHAT they can do. That's why you have teeth grinding and breath holding and eye rolling. It's the same with the eating. She has power there. She doesn't realize she is harming herself but she can decide when she eats, how much and it is a moment where she can be in charge. Made total sense to me.
We also had to set an appointment for Thursday to go back to the surgery clinic because there is so much extra granulation tissue growing rather rapidly around her stoma that we have to go have it removed in the morning. For the second time in a week.
She is slowly gaining and has grown 2 inches in a month!

Here is Abby going for a walk this morning with her new nurse(who wont let me take a pic without warning)As you can see Abby really trusts her.
Here they are hand in hand. Taking a walk on a beautiful sunny day


It was really calming and nice to watch my daughter this week. With the nurse her I can get up early and have half the house clean and breakfast ready before she arrives. Then I am able to do most of my chores while she deals with Abby. It's nice.

Friday, February 20, 2009

Abby dancing and Avery

Here is video of Abby dancing while watching tv tonight. We just have her back to the point where she is doing this again so she may appear a tad weaker than her normal self but this is her. She is a boogie machine and she loves her tv.

My dear friend Carrie has a daughter with Abby's same condition right down to the same deletion in the same place on the gene. You can watch Avery dance at www.averycat.blogspot.com

They look like the same kid on different days or different years with their mannerisms and sparkling blue eyes. Avery just appears to be a whole lot sturdier and thank God for that!

Sweet babies!

Tuesday, February 17, 2009

Just Keep Swimming. Just keep swimming!

Today was the best day I can remember in a long time! Abby started swim therapy back up this morning at our local community center. I signed the family back up. It's time to get back to life. Nobody proves that to me more than my Abby.

She was a little careful on the way in and I was so scared that she wouldn't know or remember what to do.
Look at her go. I was almost screaming. I smiled so much my face hurt She is so awesome. She was having such a good time and was so proud of herselfLook at me Mommy. I'm swimming again!

This is our buddy Little Joe. Right before he gave me a big ole kiss! What a sweetie he is!
I feel like I can breath again. This gtube and feeding and change we have had almost got me this time. Abby I am not so worried about. She's a lot tougher than I am!
Thanks for stopping by
Mommy and Abby


Tuesday, February 10, 2009

Back to school and more

Our favorite little princess went back to school yesterday after a month off. It wasn't her best day. The teachers say she was Wobbly and tired very easily. Today was better but she was definatelu done when she got home.Thought I'd share what a princesses hair looks like EVERY morning! Above is before

This is after. Tah dah!
There is also a published article this week on a possible new treatment for Rett Syndrome that involves injecting a protein into the bloodstream that would ease some of the more severe symptoms. Hopefully a step in the right direction for a cure!
Love
Mommy and Abby

Friday, February 6, 2009

Boogah!

We have had a big week in Abby's recovery. She is taking her feeds better and she is now at 200 ml's in a hour per feed. Pretty good for a kid that was gagging on 50 ml feeds less than 2 weeks ago. She seems to be filling out already. Her face doesn't look so drawn and her hair is growing like crazy.
With the better nutrition she is more vocal. Besides the normal incoherant babble I got a word out of her today. We were in the little girls section at Walmart and we walked by a display and she said, " Dora." It was awesome. If I could walk around and tape her whole life just to save those little moments I would.
She is also leaning forward in her seat and holding up her arms when I open the car door. Most Moms get this as an infant. I am loving it and so looking foward to what she will be able to show us now.
We had her IEP meeting this morning and her teachers and therapists were so happy to see her. We discussed the changes since she had been to school and what we will all need to do differently now. Since she was down for so long and not active we are concerned about her tone and strength. Especially with her core and balance. They are going to look into putting her into a gait trainer so she can go crazy during gym time and not just watch or walk around the room. There are so many things I'd like to have for her at home but I'll take school for now. We have heard so much about the Wave Vibration Board and I tried to hint about it hoping they could get it for her school but they didn't bite. It's probably a good thing we are broke cause if not your probably couldn't walk through my house for therapy stuff I want for her.
There is always discussion at the IEP's about switches and communication and what they accept for answers and false positives. I always get a little frustrated at this point. I understand their case that they need an answer they can record. I am hoping that they understand my point that they have to accept what she can give. That is the way we work at home. If she can point she points. If she can touch it with her foot that's what she said. Her eye gaze and motioning are her only ways to communicate and she has no control over what works when. I'd fix it if I would. Lord knows I would. But I can't. There are a lot of things I have had to learn to accept the last few weeks. What I can and can't do and the same for my Abby. It's just the rest of the world I have to work on!
Peace and love
Mommy and Abby

Monday, February 2, 2009

Progress

Abby is not playing YMCA in this photo. I don't know if it's been because of the surgery or because of decent calories but she is very onery lately. She cannot grab the concept that she needs to chill during her feedings so she keeps throwing her arms up to grab the tube, or her leg or whatever will move for her at the moment. When I get onto her about it she laughes hysterically.
This is princess bratty pants trying to kick my butt for taking pictures of her being a monster!
We had a caseworker and a a nurse here today. We have been told(which isn't always the case) that we will be getting a nurse for 20 hours a week. I welcome the relief. It had been offered a year ago and I was appaled that someone DARE think I couldn't do all and be all but I can't so here we are.
The nurse is going to work on getting her dairy free formula after seeeing her second gagging and gas attack during and right after a feed.
Wish us luck!
Thanks for keeping up with us
Kisses and Love from Mom and Abby