Tuesday, January 15, 2013

My sweet pea is hanging in there trying oh so hard to get stronger and better. We were excited that they were going to take her outside, but outside meant outside her room. That is pretty darn good too and we will take it!!!! They are also trying to get it so that she can sit in the doorway of her room and feel a part of the goings on on the floor. I guess the nurses sit across the way and many kids walk down the halls. I guess that would let them keep an eye on her and let her feel like she is part of the world at large!!! You go my little Julia!!!
Tomorrow morning is the big meeting and we hope that some questions and such will be answered by the team. I talked to Carrie for quite a while today and she has a great deal of faith in the team and knows that it will work out. They are bringing out a hematologist to take a look at her blood count having trouble going up. I am glad but hope that it is just that they are just taking too much blood from her. They seem to be still waiting to get permission from Kaiser to do the bronchosopy. Hopefully they will get some answers. They are doing her breathing shaking [this is a vibrating vest they put on her to help keep her lungs clear] at 2 am and they wake her up several times a night when they suction her. I hope that the concerns about disrupting her sleep will be addressed and not just put as a hospital policy which seems to be the answer they get right now.
Carrie and Glen have one last night tonight at the Family House and Carrie was happy to learn that from 10 - 6 she can use their showers and kitchen and such. That is a big relief. They are also hopeful that they can get back in in about a week. I sure hope so!
I hope to be able to tell you about her big "outing" from the room tomorrow! I am sure that she will be thrilled no matter how big or small it may be!
You all are keeping us sane and okay! Thank you so much for all you do for us.
Another little side note, my" baby" brother is having some heart problems and could use a few prayers! Thanks, angels! I love you!
Love and hugs I look forward to giving a great report tomorrow!
Grammie Jen

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