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

Sunday, April 29, 2012

She has rocked my world (again)!

PT on Monday – she loves to be outside!  I’m so afraid of what we are going to do when it’s 100 degrees outside and she can’t understand why no one will let her go out!   Doesn’t she look great?  Such a big girl!

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Tuesday morning at way too early in the morning, we loaded up and headed to the hospital.  Bella went in for a DL&B – basically they put her to sleep and take a peek in her throat and lungs.  They cut off a granuloma and peeked around her airways.  She has the normal DS slightly misshapen airways with collapsibility, but not too bad.  So much improvement from last year’s DL&B.  They cleaned out her ears and noted that her adenoids and tonsils are huge and need to come out.  Probably next month or early summer.  Then they mentioned the d-word.  Decanulation.  If I hadn’t been sitting, I would have passed out!  Jason commented on my face!  My goodness – how far you have come my baby.  It’ll take some time, but it’s a when, not an if now.  Breathe.  Breathe.  Breathe.

Waking up too early and waiting for our turn to go back…seemed so strange to not be hooked up to a million things!

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I have had such a hard time trusting our pulmologist.  I feel like he pushes her so much and I am so very, very afraid of regression.  I don’t want to lose what we have all worked so hard for.  She has worked so hard for.  I seriously was panicking imagining what he would put her through when we were in house.  So that d-word really rocked me.  Sure, I had hoped that would happen.  And I was beginning to allow myself to think maybe next year.  But he is talking sooner than that.  Panic.  Breathe.  A million thoughts flashed through my mind when he said the d-word.  Nursing – gone.  (that is great and that is bad).  School – she could go.  Life – we could have one.  Bedroom – she wouldn’t need half the house anymore.  A million thoughts.  But mostly panic.  Mostly fear – fear of the unknown.  I know this world.  What is in the next room?  Will it be good?  What about oxygen?  There is no way this kid is keeping a nasal cannula on.  What happens when she gets sick?  Questions.  Fear. 

After recovery, we headed up to PCU.  They stuck us in a pod.  I hate pods!  I like it when we have our own room.  I am so paranoid about germs when we are in the hospital!  But as the hours ticked by, I saw the hand of Providence in our placement.  In the pod, there are four beds, so us and three very sick kids.  They didn’t move.  They laid in their cribs attached to machines.  One little one dipped into the 20s.  They were rejoicing because she wasn’t bradying as much that day as normal.  The other one was headed to Health Bridge, basically a long term ICU care facility for children.  And the third one was having troubles with GI, as well as respiratory.  I sat listening to all of this while trying to keep my little wiggly monkey in her crib.  (and suctioning out blood – ick!  granulomas has a lot of blood vessels in them – who knew?) And it dawned on me – we don’t belong here anymore.  This isn’t our world.  It was.  We were there.  But in the past three years, Bella has grown and gotten stronger!  We don’t fit into the normal DS kid world yet either, but we have left this world behind.

Bella is ready.

(and maybe just as importantly) I am ready.  Have I held her back?  Or have I kept all of the doctors/nurses/therapists focused on treating her as a whole person rather than just individual organs?  I’m not sure, but I know that I have finally gotten to the place where I am ready to take the next step with Bella.

We are ready. 

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They kept us overnight and we headed in for a chest CT the next day.  The doctor is still looking for a reason for her long dependence on the vent.  I bribed her with a cookie.  She doesn’t eat, but the child can lick!  She had fun with that for a while. 

Bella always surprises people at the hospital.  If people come at her with gloves on, she goes into fighting mode.  Wanna check if her IV is still good, you are gonna pay for that knowledge.  It’ll take at least two of us holding her down for get that blood return.  CT scan and she has to lay perfectly still?  LOTS of velcro, blankets, and Mama holding her hands above her head and singing.  I love her fighting spirit!  She is alive because of it!

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So our new plan is to be off the vent whenever she is awake.  T&A in about 6 weeks.  And then to start capping her.  Fortunately for me, I had an excellent pulmonology fellow who reassured me that capping takes time.  They won’t just yank her trach out.  Right now she is doing excellent.  Way to go Bella!  You are awesome!

Sunday, April 22, 2012

Bell’s Week

Playing on the Wii with Lizzy           “One of these has to start Singing Time!”IMG_8456IMG_8568

PT – we are working so hard to catch up on so much that we have lost the last month.  But look – outside!  She loves it!  Crawling outside, who would have ever thought?


OT – work, work, work on all that is sensory


PT – standing on one leg again.  At least we are back to that!  And bubbles!


Bella likes Joy’s glasses!                     Playing in the toy box!


Hanging with Jessi                               More bubbles


She was still off the vent a ton this week, but not as long.  Oxygen is needed a lot of the time now.  She has asked twice this week for her vent.  I have seen nasal flaring which is new for us, she normally sticks with retractions and wheezing.  We head to the hospital for a DL&B, CT, and tweaking on Tuesday.  It’s got me a little anxious, but I’m hoping for good things.

Sunday, April 15, 2012

Bella’s Week

Bella continues to do well off the vent – a miracle!

Music therapy!                                    Loving on her brother


She loves being outside!


And looking at herself – she loves that too!


Loving on her little brother


We took her to my parent’s farm.  I am showing her the chickens and the rooster.


                                      She loves her brother’s swing!


Sunday, April 8, 2012

Bella’s Week

Monday found us in GI.  It was a great visit!  We asked for, and the doctor approved, the removal of her GJ button to just use a G button!  A huge, enormous, gigantic, thrilling step!!  For the past three months, we have only used her G – and we have had no issues.  I am thrilled!  The moment we got home, I deflated that balloon, and got that GJ out and replaced it with this tiny little g button.  So exciting!  Huge step, baby girl!

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Music Therapy

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Look!  Look who is playing with dolls.  Not before Alex.  No way.  Not happening.  She hated dolls.  Now she knows what they are for.  My concrete girl – give me concrete examples to teach me!  Love this!  She so loves her brother!

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April 8 249The sad news for the week – first tempered with good.  We have really been pushing the time off the vent and she is rising to the occasion beautifully!  Like 6 hours or more a day.  So exciting!  BUT…it is having it’s toll.  Oxygen needs are up.  While sleeping, she is riding the vent.  Secretions are crazy and she is so very dry.  AND….she has regressed so much in PT.  She was walking with the gait trainer.  Now she is refusing and has reverted to her crazy, compensatory crawling patterns.  It’s all about lung capacity.  She can only do so much.  So we are kinda waiting to see if she will adapt to this new workload and be able to bump up her efforts in PT or not.  We’ll just have to see.  Give and take.  (in the picture she is being fitted for new AFOs and knee braces.  You would think we were killing her!  She is a strong girl!)


Easter morning.  And yes, we did take her to church!

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Wednesday, April 4, 2012

We love you, Miss Kaci!

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As if there hasn’t been enough change in our home lately, we had a huge change happen on Tuesday.  It was Miss Kaci’s last day.  Miss Kaci is Bella’s Monday and Tuesday nurse.  She came to us as an LVN and completed her RN while caring for Bella.  She has been with us a year and a half.  She was offered a job that is going to be great for her career, and is killing me.  (sorry kac – you know I love you!)

There are some nurses that really care about their patients.  They become part of the family.  I loved Kaci because of how much she loved Bella.  She was always teaching her crazy things.  In the third picture they are giving each other “nukes” (knuckles).  She could sing all the Signing Time songs.  She knew all of Bella’s signs.  She is the one that pushed Bella so hard on walking.  Bella and she would cuddle.  How do you thank someone who loved your baby and helped her thrive?  We will all miss you Miss Kaci!  We wish you every happiness in your future!

Bluebonnet Pictures

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My brother!                                                  The Little Ones

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“How come you get to hold him?”                 An attempt at a family picture

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At our picnic afterwards                  

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