No matter how old she is, the doctors need a clear bowel to look around so we have to take steps to clean everything out before they go a lookin'. So at 1 this afternoon Ellie had a good lunch with Karlene. Noodles, asparagus and chunks of cold chicken breast. They had a picnic in our living room as a special treat with ellie doing gymnastics between courses.
I swear Ellie knew something was up because, by our estimate that is it for her until Wednesday afternoon. She is off of solid food, off of formula and onto pedialyte until tomorrow morning. Then it is nothing for a long while until this whole thing is over on Wednesday and we have to begin the task of getting her back on formula and food.
To add insult to injury we also had to give her an enema tonight and another in the morning to help clean things out. What is is that the wode-mouthed frog says? Ooooh.
Poor little girl.
We will see how she does tomorrow morning when she wakes up and will likely be hungry. We will try and distract her by doing fun things until 11 when we leave for the hospital but after a while she will want food and tell us, like she did tonight: 'I hungry. eat dinner.'
It is especially tough to deny her food when we have worked so hard to get her to eat over the past few years. I sincerely hope that this isn't an event than sets us back months on her feeding skills and drive.
Who knows we may take the plastic off of the candy cane by Christmas. All she wants is one lick. Really.
The bags of distraction are packed and we are ready to set up camp again at CHB. I wonder what they would think if we brought the dress-up clothes to make Ellie fancy:
If we can simply avoid Au Bon Pain. I hate that place and their lousy coffee. It tastes like hospital to me.
We will be laptop-less for this adventure so updates will come late tomorrow night when I get home.
Who knows, we may have lots of good news to show for the hard work.
7 comments:
Good Luck! Lots of positive thoughts!
Well I won't think of one other thing all day today. Hang in there and come home soon. She's an amazing girl. The two of you aren't bad, either.
Love,
Beth
Abby, Gil, and Ellie, We wamt you to know that we read the blog everytime you have a new post. So sorry that things are going to be so tough on Ellie for this series. Will be glad when it is over and hope that the solution is quick and easy. She is so adorable that you could make a book of just Ellie photos and it would be a best-seller. We are holding you all in our hearts today and tomorrow. Susanne and Jack Brown aka Nana and Grampy to Madison and Camden.
Thinking great thoughts for you all! And I know completely what you mean about au bon pain. Hang in there--good food for everyone soon.
We just got back on Sunday from an uneventful but overly-cautious 36 hours in the ICU at CHB. We are so relieved that all is well, and the previous six weeks of "girl in the plastic bubble" mode is over.
All the best for a happy, patient, non-hungry Ellie and lots of creative ideas to keep her busy.
Once Ellie is done with her studies and Esra is well again, I hope we can meet up for a playdate, and talk more about feeding tubes.
Wishing you easy procedures, short waits and a patient, happy little girl. I know how hard all this is. Sending you lots of well wishes and hopes for good news.
Thanks great blog poost
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