I am crazy...

Now I know I am going crazy...A sweet friend just wrote to say how sorry she was that we were in the hospital so long...it made me question if I actually ever said we are home. So I just checked and I did say we were home. The day after she opened her eyes and woke she has been so good every day since. I guess she just needed a long winters nap!

The doctor upon discharged just put everything on this Protesus(sp) bacteria. The vomiting, fever, sleeping and of course the UTI. In short I am back to cathing her all the time except when sleeping. She is eating (by g-tube) well and just a happy little girl.

So sorry for forgetting to update and thank you to Lisa for letting me know.

"She's with Me..."

http://www.youtube.com/watch?v=oj6GXVTAOiU&feature=related

This is a link to a song by Collin Raye. I think it is called "She's with Me". It is a YouTUbe video so maybe that is why I can't make it work. But if you go to You Tube or google it you can probaby watch the video. It is so sweet and brought me to tears, tears of joy. In the song he says "She is my badge of honor". Such a heartfelt, precious statement about our perfect children. When I sometimes get frustrated that she can't talk, walk, run or whatever, I am reminded that she is made in HIS image and likeness. There are reasons she doesn't or cannot do these things and then it is ok or better.

Awake and Smiling..Going to be a better day..

Just a note to say she woke around 4:00 p.m. yesterday and has been so much better. Will post more later when I have time. Thank you for your prayers.

Being told NO!!!!

(Be sure to turn down the music volumn on the blog, it is down on the left hand side.)

By the looks of this video I am sure you think Annabel has never been told no. And to be perfectly honest we don't tell her NO that often. This was last week and she had us all laughing.

But this week is different. We spent Saturday in the ER suspecting another UTI and not being able to wait until Monday for an antibiotic. Since last month when she was hospitalized she has really been having way too much phlegm/mucous. Even with her meds to manage the secretions it has not been much fun. When we arrived at the ER even though she wasn't feeling her best she was still smiling, clapping and playful. That was until they began their deep suction. I am sure this is coincidental but she mistakenly suctioned down in her stomach when trying to suction down in her lungs. She went into her lungs (needing a culture) and then mistakenly down into her tummy then back into her lungs. Annabel became very sick and vomiting began right after this. She continue to sleep and vomit until late this evening. She still can't keep down anything in her belly. They will begin tomorrow trying again. I did bring her home from the ER Saturday night thinking she would stop the vomiting that night. By Sunday evening still vomiting and sleeping we returned to the ER. They had taken an x-ray Saturday afternoon which showed no pneumonia, but Sunday night seemed to show aspiration pneumonia. We were admitted and I am glad as she is fairly sick and so uncomfortable. We do know she has another gram negative UTI whatever that means. They are almost positive we will have to begin cathing her again like was said early by her urologist in Houston. Shame on me for questioning, right?

The frustrating part of this puzzle is that we know due to her surgery recently that she can urinate. Her two biggest issues are her UTI's and her airway is becoming an issue almost daily. So please keep her in your prayers that we can resolve or manage these two areas that seem to bring her into the hospital more than we want.

This video I posted is to remind us daily of how Annabel is so full of life and such a beautiful spirit. God continues to have a purpose and a plan for Annabel and it may just simply be to spread her joy.

A story with a cute ending occurred last night in the ER. There were two nurses, Kourtni and myself present with Annabel. They were trying to find a vein on Annabel as is always too much trouble. The first nurse had been searching both hands, arms, legs and feet. She had tried too long for my stomach on her right hand until I ask could that please be enough of trying in this same spot. She was so sweet, she was just doing her job and we all knew Annabel needed an IV quickly. Soon after she stopped and went to get her friend who they both acknowledged they worked together well finding IV's. So this new nurse began looking first in all the places and you could see and feel the frustration. They decided to attempt the same vein in the right hand and go in between where she had been stuck on Saturday's ER visit and try to go into the side of this vein. Again, they were digging to find this vein. I had shed tears silently for Annabel, whipped my eyes and let them have their way a bit longer then when they said they were trying a very small vein in the same hand I had to stop them. I asked why can't you enter the same one they got last night while we were here. Since it had been successful the night before (I didn't want to use it due to the fact they had just used it, but hey) but they were commenting on how they didn't think it would be a good idea. As I was becoming so upset, Annabel took her left arm and reached across her entire body to the nurse hand that was holding her right hand and would not let the nurses hand go. At that moment, both nurses looked at each other and with the sincerest look told each other and myself that they believe Annabel was telling them to use this vein here (the one they had used the night before). It truly was amazing to all of us in the room. There wasn't a doubt that she was so tired herself and almost pleading with them by say please try this one. On the very first stick they drew blood and we still have this vein tonight. This may sound so hokey but it was the nurses who convinced me that Annabel intended to do exactly what she did and get this message across to them.

Let me say these nurses were not being mean or cruel but just doing their job. They knew it had to be done for Annabel to receive her liquids and get her labs. I was touched that they were tender enough to see that Annabel was communicating even before I saw what she was doing.