Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Sunday, July 28, 2013

Bella’s Two Weeks

We went to see her GI.  Our plan to get her to eat only succeed in making her lose weight.  In case you were wondering she kinda looks like Gollum without her clothes on.  So we have decided to up her calories and just continue to offer food as she wants it. 


Visiting Petco – loving seeing the animals.  Love that she can visit places like this now :)


She got her cast off.  She wasn’t impressed by that experience.  Three months and we’ll go back for another x-ray to see if that femur is growing the way we want it to.  (hoping!)


We visited Spring Creek Greenway.  There were cool snakes and things to look at. 


A tiny hike


Playing with glow bracelets            Blowing raspberries on sister’s belly


Four Little Monkeys Jumping on the Bed                  Playing with Brother


Dancing with Jessi


Bella’s Grannie sent her two pop up books.  So very kind!  Thank you!


Playing in the closet with the flashlight


PT on that leg                      Tea Party


Playing at Grandma’s  - building with real wood blocks  and then back to the ipad


Sunday, July 14, 2013

Bella’s Week

Last week was rough – Bella was in pain.  Monday morning she woke up a new woman, ready for the world!  Her PT took it easy with her and they laughed and played for her whole session.  Welcome back baby girl!


We cleaned out Bella’s room.  I moved her refrigerator out of her room.  I had kept meds in it.  The nurses could also use it for their food.  I put all of her meds with the family meds. I am really liking her becoming more “normal.”  I am loving not having a nursing agency looking over my shoulder.  (loved our nurses, they became my friends, but the agency with all of their rules and forms – no thanks!) 

Monday night for Family Home Evening we planned Ring A Round the Rosie – Bella loved it!

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Playing around with the ipad and in a box with sissy

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Working on her letters and hanging out outside

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Thursday we headed in to Cardiology.  Loved how sissy shared her music with Bella.  What a great visit!  We were there for eight hours with all kinds of tests.  Doctor said she is doing so well we don’t have to come back for two years!   Her heart rate in dropping pretty low when she sleeps so I have to change her alarms and see how low she’ll go without the alarms to wake her up and get that heart going again.  If it too low, we’ll have to run more tests, but the doctor feels that she’s just really, really asleep.  She did hint about a surgery when she was older, but truthfully I don’t want to know about it right now. She is doing great and I want to relish in it.

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 017  Bella has had this odor about her.  It basically smelled like rotting flesh.  Well, it wasn’t her cast.  It wasn’t her mouth or nose.  It was her g-button.  Awesome!  She is always very defensive of her body, but she was especially defensive about her button.  If I lifted her shirt, she would start screaming.  I tried to keep it clean, but the odor kept getting worse.  We ended up in the ER on Friday.  I went in thinking we had an infection and worried – they is how she gets all of her nutrition and her fluids.  She does have an infection and an abscess.  So back on clindomycin and two creams – one an antibiotic and one a steroid.  Hoping for some relief for that sore button!    Sad, though, when the ER doc walked in to the exam room, she proclaimed, “Oh, I remember her.”  Not awesome.

Wednesday, July 3, 2013

First Step Over

Bella’s first of many (unfortunately) surgeries on her knee is over and she is home!

Waiting in the waiting room and then in pre-op

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The before and after picture.                                    My little drama Queen

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She was feeling no pain and her numbers were terrific, but she has to tell me all about the things she is just plain mad about.  She is always angry when she wakes up with an IV in her hand.  Really?  This again?  Haven’t we talked about this?  She points to it and tells me all about it.  Then she moved onto the cast on her leg.  And this???  Who authorized this?  Dad was with us and he found this “I’m going to tell you how I feel about this” process very funny, so he recorded it.  “Yeah, Da, Da, Da”  (translation – Dad, Can’t you see this repulsive thing right here?)

The surgeon inserted this.  This will be a long process, but we feel we are in great hands.  We’ll start with the bones and slowly work towards soft tissue.  Her doc is trying to be as gentle and careful as possible without building up scar tissue that will hurt us in the long run.

Dr. Mansour is great with Bella.  I just love him for that!