Saturday, January 31, 2009

Abby Doo

This is not a new picture of Abby but it is my favorite. We have been spending the last few days just dealing and learning. We are slowly upping her feeds. I finally accepted yesterday that I was babying her too much(who me?) and that I need to be more aggressive so she can get her complete nutrition. After I saw her get too much and be in pain with no way to burp or vomit I have been taking it too slow and that is not helping her.
She is very frustrated because the feeds are at two hours still and keeping her still for 2 hours is a chore. She's a mover and a shaker and has things to do and wiggles to see. She cannot grasp that she just needs to chill. Must be my kid or something. She is getting 250 ml fees at 125 ml per hour. Hoping to get that up to 250 per hour. I really wanted to be able to give her 6-7 hundred calories while she sleeps but our equiptment doesn't go that high so 500 is the limit at night for now.
I had a hard heart to heart with her PCP yesterday. We discussed what we both could have and should of done differently. What we both need to learn and realize about each others capabilities and about Rett Syndrome. If he was anyone else I would have kicked his ass but he has been with me from the beginning of this. The only one who would listen or believe me and the one that got her diagnosed. He respects my opinions and my knowledge. I think a few doctors(very few) and other Rett Moms are the only ones allowed to tell me anything in the I may be trying to fight too hard a battle I have no control of department. He was as kind as he could be about it and it was all stuff I already knew. All the things that bring on the tears I wont discuss.
So anyway.....Abby looks great. I look like hell. My eyes and face are swollen and patchy. I never had blemishes as a teen but boy I have them now. Stress is a bitch.
I need to write a Thank you letter on paper to the Admin Dept of Childrens Mercy at some point soon.
Maybe when I can think for more than 5 minutes at a time.......
Thanks for reading


Melicamay said...

Hugs hun! She will get there and you will get used to the pump feeds and everything in time - I can only imagine how hard it is to accept everything! Keep fighting for your daughter and she will keep enjoying having you as her Mommy!
Love to all xxx

Brooklyn and Kelly said...

That is one of my favorite pictures of her too!!

I hope that things can settle dow nfor you real soon and that she can sdjust to her feedings an hopefully you can get some sleep! Hang in there - you are SO strong!