Thursday, January 29, 2009

Thank you Childrens Mercy!

After almost 2 weeks we finally have our baby home. I am exhausted. I think I aged 10 years in this last 2 weeks.
The pic above is Abby having her first feeding at home. All comfy on the couch. I am a little concerned about her muscle tone. She seems very weak and wobbly and it seems she is constantly hooked up. Like everything else with Rett Syndrome it will take time to adjust. We are controlling her pain and she is very patient with our ignorance.
How does someone this sick and weak look this good first thing in the morning in the hospital? Dont ask me. She definately doesn't get it from me or her Dad.

I do want to make sure that I thank ALL of the residents, students, the two attendings , social workers,(S), and home health services. Kraig I don't really hate you. I hate everyone at 7am. I wish I could express in words how much it meant to me that those of you on the Orange team honestly expressed such an amazing interest in my Abby. You all made me feel that she actually is the princess we see her as. So many people just write our girls with Rett Syndrome off and none of you did. You really touched my heart and it was so clear that Abby was Abby to you and not room 21. I hope that you keep an interest in Abby and Rett Syndrome. We need people like you.
The nursing staff and care assistants were amazing and I know I am not the easiest Mom to deal with. I know I'm bossy and expect things done right now! Thanks for putting up with me. I wont post all your names here but I do know and remember each one of you. Thank you for showing me stuff over and over. Thank you for putting up with my exhaustion and attitude. Thank you for putting up with my odd and sometimes rude sense of humor. And most of all THANK YOU for loving and caring for my girl.
Thank you girls from Child Life for giggling with us in the hallways and for singing us to sleep. You are amazing.
If there is ever anything I can do or answer for any of you feel free to ask. I would be honored.

2 comments:

Brooklyn and Kelly said...

You ARE beautiful first hing in the morning :) We are SOOOOOO glad you are home and we also want to THANK everyone who took good care of you - you are one special angel to me! Big Hugs from your Indiana Girls!

Avery said...

sniff,sniff! Terri has a soft side!

abby, you are such a cutie and I m glad you are feeling better!