Sunday, February 27, 2011

The great outdoors....

So today our weather was great. Nice enough to bring Annabel outside. Rebekah sits on the patio and plays/sings with Annabel. Even though Annabel isn't us to being in her stander/gait trainer for therapy, she loved hanging in the gait trainer being upright outside. Her brother, Derek came by to visit with her. Annabel has always loved to hold your face with both hands, but lately she stare intently at our mouths. She wants to speak so bad. She moves her tongue and her lips and some of the time she utters a sound. We rejoice and she loves it. This has become her favorite thing to do.
She is still off the TPN! This is good but she is uncomfortable, especially in the evenings on her feeds. She is becoming very distended. Prior to coming into the hospital she was on 4 daily feeds of breastmilk alone. In the hospital they wanted her on pediatric compleat alone and I told them I would only agree to 1/2 breastmilk and 1/2 or what they wanted. So that is what we are doing. She had been on pediatric compleat for 5 months prior to going on TPN and was miserable. We are running about 1 feed per day behind and it is crucial she get all the feeds in. This was the minimum amount she must take in without getting IV fluids. So each day we push. It is hard when she screams and is so uncomfortable. Last night we had to hold the feeds due to the yellow bile when we vented her. We see GI on Tuesday and I am glad it is our regular GI. In the hospital you have to see whoever is on service for two weeks straight.
She is off the vancamycin for the UTI and now we are finishing out the Fluconasol over the next four days. We are glad to be home. Depending on how she feels we may allow her to return to school for some hours this week.


Anonymous said...

I hate hearing that she is so uncomfortable. I know this breaks your heart. We are here for you when you need us. Edie and Ben

Janet said...

Oh, Ms. Cathy, that pic of her with Derek is priceless!!! Love the big smile in the middle pic! You can tell by the look in her eyes that she was loving being outside! I think it just stimulates them in such a different way when the are out. I see this in Sage also.
The is precious about her wanting to talk...I am going to believe that those words ARE going to come!!!
So very glad that y'all are home, for her and for YOU! I will be thinking of y'all as you continue to try to find the "right" balance for her feeds.
Much love to you,

Colleen said...

I love the new look to the blog - its so Annabel.

Thank you for keeping up on the blog so well. I'm following you everyday and so enjoy your posts.

I'm so proud of you and your family for pushing to get her off the TPN. Your photos tell all the difference.

Praying for contiued respite for Annabel and your family,

Colleen (and don't forget, there's some angels out there pulling for her too!)

Laurie in Ca. said...

I love the pictures Cathy and am praying the feeds start being tolerated for her. Hoping you find just the perfect balance for her so she can stay off the TPN. She looks so happy and I pray all infection is gone. Love you girl.

Love and Hugs, Laurie