Monday, May 31, 2010

Hiccups are funny!!!

video

Click on the arrow to see video of Abby having a giggle over having the hiccups. She had just gotten in from outside and she was absolutely exhausted. Then she got the hiccups and I had to tape it. I love her giggles.

Summertime

Preschool is over for Abby after 3 years. She does have a month of ESY left for therapies but Thursday was her last day of actual preschool. She will move on to kindergarden in the fall. Above is Charlie and June. Charlie is her afternoon driver and retiring this year after decades of driving Special Needs Kids. Good luck Charlie!
Her Morning driver and aide. We always hate saying goodbye. People really get attached and then their gone. Bless them for the work they do!

Gettinf ready for her last day. Looks like she's gonna sock me one!


Her new haircut for summer. Way to hot here for long hair



Donating the hair to a cancer program.
Keep in touch everyone!

Monday, May 24, 2010

No surgery..for now


I can't believe I havent posted for 2 weeks. Bad Mom. Helps that I have been horribly ill with some kind of bacterial respiratory infection.
In my last post I told you that the surgeon had talked to us about doing Pyloroplasty surgery on Abby and had sent us for a Nuclear Gastric Emptying study and until we figured something out we would be feeding her slower and more often.
Well we did all that. The slowing of the feeds that is. She has thrown up a couple of times but it hasnt been an everyday thing anymore.
We went in today for what we thought would be results from the study and the doctors recommendation. I dont feel we got either. Two weeks ago he recommended the surgery and talked about how it would help. When we got there today we found out that no only were we not scheduled to be seen...they had that we had missed all the tests we had spent hours doing over the last few weeks.
So Mamma Bear threw a little fit and got out her appointment card with everything on it and they got us in after a 2 hour wait.
When the surgeon came in I had to remind him why we were there because they had no record and no notes. This time he was very glum with a no guarantee it will work and so much can go wrong attitude. I am so not happy with this hospital right now. If we had not run into the best Doctor we have ever seen in a hospital setting on the way out I would have been marching my butt to the Patient Advocates office.
We ran into Dr Prince Charming..Although you couldnt tell by Abby's reaction to him today. I think she was feeding off my nerves being so rattled and didnt look at the Doc sideways.. When she was in the hospital she straight up hit on him every time he walked in the room. She is such a player. Wish she would of batted her lil eyelashes at him or something.
SO there will be no surgery unless and until someone with some knowledge says it's an absolute no choice kind of thing.

Monday, May 10, 2010

Changing things



This morning we took Abby for an Upper GI test to check her Fundo.
I was up all night worried to death about how they would perform the test on her since she has trouble swallowing and a NG tube through her nose has been unable to be placed in the past.
Of course I worried for nothing because they were able to place the fluid for the test through her MIC-KEY Gtube button. She was such a trooper. No complaints and all smiles. You would think she would be sick of being messed with.
The xrays showed that her fundo is tight and in place. We had been worried because it is supposed to hinder her ability to vomit and control her GERD but she vomits almost daily. So much in fact, that her little face is covered in broken capillaries.
Once we saw the surgeon he explained two options for her. One is to feed her slower. When she had her GTube surgery she had almost no stomach left and what she did have they wrapped for the fundo. In Neurologically impaired children their bodies just don't work the same way. The second option is to start with the first option and do a Nuclear Gastric Emptying Test next week. If her body is unable to empty the contents of her stomach properly he will have to perform a Pyloroplasty. This procedure will only be performed if absolutely necessary but it might just be the case. We are hoping not. I really can't stand the thought of putting her through another surgery but I cant let her vomit and aspirate every day either.
So good thoughts,prayers or both would be appreciated.

Saturday, May 1, 2010

Gracemor for Team Abby






Abby all dressed up and ready to go to Gracemor Elementarys Dress Up 2 Cure Day









Giving our presentation about Rett Syndrome to the 4th grade and Kindergarden classes













The Kiddos. They were GREAT








Mrs Cowgers Class. They are such good kids and were so nice to Abby.










Abby was a little overwhelmed but very well behaved















Abby telling Mrs Cowger all about it







Thank you so much Mrs Cowger. We appreciate all your hard work and dedication for our cause and for Abby.






Yesterday Gracemor Elementary held a Dress Up 2 Cure Day in honor of Abby. It was our first one where a school actually participated so we didnt really know what to expect.

As soon as we got there kids ran out in the pouring rain to help me in with Abby. We werent sure if we were going to talk to one class or all classes and I was a little shocked when I walked into a room that full of kids.

The kids were wonderful while we gave our presentation about what Rett Syndrome is and what it is like to have it. They asked great questions and I was so proud of them.

Thank you Mrs Cowger and all the teachers,parents,admins and parents who participated. We so appreciate it.

The Dress Up 2 Cure Campaign for Team Abby is still accepting donations until May 15th by clicking here or in the box at the top right of the blog.

Looking forward to next year!