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

Friday, October 17, 2014

Lately in Bella’s World

She really likes to practice her violin.  She’s so cute.  It’s giant on her!

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School work coming home.

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The family went to a Retreat and she got to play in the sensory room at Brother’s school.  She loved the ball pit!  She’s tired in the last picture, but she loved her balloon!

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Bella got sick at school and had to come home.  Joy made her a get well card.

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Aunt Kathie sent a tea seat.  The girls loved it!  Aunt Asia sent this cute dress and boots.  So cute on Bella!

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Jessi, Brother, and Bella.  We were exploring our neighborhood.

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Another day, another tea party!

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Monday, October 13, 2014

Pulmonology

Pulmonology went well.  He acted a little scared of Bell.  He knows her old Pulmonologist.  He does things a little differently.  Rather than just sitting around waiting for the next virus that lands us up in ICU, he’d rather her be on a couple of daily steroids to be proactive.  They are meds we had weaned from, so we’ll try that.  Especially with this new environment and a real winter coming!  I told him my philosophy of no hospital care and he told me his - get to the hospital, get stable, then recover at home, but he did tell me he was fine sending her home on O2.  So we’ll see.  It makes me nervous when Bella makes a doctor nervous.  They tend to overreact then.  We’ll give him a shoot and see how it goes.  I did like that they do have same day appointments.  So if I’m considering taking her in to the hospital, I could see him first.  That is nice and would never have happened in Houston.

Selfies helps us as we wait and wait and wait in doctor’s offices.

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Friday, October 10, 2014

Doing Great!

Cardiology was great today!! They do things a bit differently here. We did the EKG and then spoke with the doctor. After that he did the ECHO himself while I held Bella in my lap. Yes, she fought me, but he was able to get it done! In Houston they had kicked us out of the ECHO lab and told us all future ECHOs would have to be sedated.  So I was thrilled he got the ECHO!  Results were great too! Valves are behaving, just mild leaks. Arterial pulmonary pressures are on the high end of normal - fantastic!!
Bella, my miracle girl!  Who would have thought that sick girl who was on the verge of death would be giving results like these!??! So excited as she continues to do so marvelously well!!

Tuesday, October 7, 2014

ENT

We meet our new ENT today.  The Audiologist attempted a hearing test.  That wasn’t happening.  But she was successful with getting her tympanograms.  Flat. Darn!  That means tubes.

Oh well.  We’ll use the time under and see if we can’t get that sedated ECHO pulmonary wanted and get her hernia repaired.

Tuesday, September 23, 2014

Life and the Center for Courageous Kids

Playing outside with sister

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Have I mentioned her bus ride and how I feel about it?

Bella’s school had a Gallop A Thon.  Bella doesn’t know what that means, but she got a new shirt (and it’s not a uniform shirt!)

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Little Miss picked up ringworm somewhere, so off to the doctor we went.  She wanted to sign herself in!

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More play time with sister

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Mama is getting ready for this strange concept, winter!  At least Bella gets to play with the boxes!

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Blood work was required for her physical.  She was happy to wait, but so not happy (one Mama and two nurses plus two child life specialists) to give her blood.  Her results were fantastic though!

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French fries to cheer us up!  She’s not sure they are worth it! :)

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For the weekend our family went to Center for Courageous Kids.  Our family was assigned two helpers, Miss Amy and Miss Shanna.  She loved them.  We had so much fun! She loved the music and the horses!

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On the way home from camp, we stopped at Abraham Lincoln’s birthplace.  They have a lovely National Monument there celebrating his life and accomplishments.  They also have a boardwalk so people in wheelchairs can see everything too! We were grateful for that!

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Tuesday, September 16, 2014

NORMAL!

How often is that label slapped on my baby girl?

Ummm……never.

Except today!  So thrilled.

I have been feeling that Bella did not need to be on thyroid meds.  I know, DS kids have a higher rate of hypothyroidism than the rest of the population.  I know that she has had more labs on her thyroid levels than I care to count.  We have done nuclear medicine scans to even locate her thyroid at one point.  We have walked the endocrine road, but lately, I just wasn’t feeling it.

Talked to her Endocrinologist.  Well, that was a no go.  After she was decannulated, I asked to have as many of her docs moved closer to our home.  Shocking, I know.  Who doesn’t enjoy the commute downtown?  I got an NP and a doc that I just didn’t like.  Won’t listen and frankly, was hard to understand.  Crazy Mom who questions everything. How dare I?

So I was crazy and during the move just stopped giving her the med.  Lest anyone jump all over me, I watched carefully for signs and symptoms of low thyroid – and nothing.  I had the pills ready to crush and push into her tummy should I see so much as a stray hair on her pillow, a patch of dry skin, or extra fatigue. She was the same.

We got here and I visited with her new pediatrician about my concerns  - and she listened to me.  TSH and T4 labs were ordered and have just come back.  Her results are completely normal!  Wahoo!  So excited!

Now we’ll continue to monitor, but I really feel and the pedi agrees with me that this might be the cause, her abnormal results started during our ICU days.  And being on death’s doorstep can definitely have an effect on thyroid and thyroid function.  So did she need the med during all of that time?  Probably.  But this girl of mine has healed and her body is preforming its proper functions – and we are down one med and one doctor!  I am so grateful!

Sunday, August 31, 2014

August

We left our home in Houston and drove towards Iowa to visit Grandma and Grandpa.

Swimming in the hotel pool was fun!

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Playing at Grandma’s house

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Visiting the zoo in Iowa

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Meeting the new pediatrician – can I just say that I love her?  She was fantastic with Bella!!  Bella is holding her hand!  Monumental people!!

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Playing in the new house and at a new park in Louisville, Kentucky

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Starting school (KINDERGARTEN!!!!) at Chenoweth Elementary.  Bella rides the bus.

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School work and eating breakfast – really eating.  She’s eating three times a day.  I can not believe it!  No more baby steps.  This girl is bounding from milestone to milestone! Way to go Bell – you blow me away!

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