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

Friday, May 1, 2015

Derby Parade

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Isn’t this fun?  They made a horse for Bella’s wheelchair.

They had a parade through the hallways.  So fun!

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Happy Derby Day!

Saturday, April 18, 2015

Bella’s Week

They have formed a new special needs baseball team.  It has an astro turf field so if we need our walker or if it’s a wheelchair day, she can still plan.  She was excited! We are excited for this opportunity!

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Crazy Bella girl loves Happy Teaching Songs, ABC Phonics Song.  Texting her teacher, we learned they watch this song every day!  Teaching has changed so much since I was in the classroom twenty years ago!

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Bella getting a new walker!  PT likes her to use it behind her.

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Cuddling with my sweet babies.  You wouldn’t believe how often I get asked if my cute Jewish/French six year old and my Chinese three year old are twins! Love them so!

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Tuesday, April 14, 2015

ENT

Well, at our follow up appointment from having our tubes placed,  Our tympanic graphs were flat again and she refused to let the doctor look in her ears.  Awesome visit, let me tell you!  Since she isn’t showing any signs or symptoms of ear pain or hearing loss (although she never does), I suggested we just wait a couple more months and try again.  Sigh!  I promise we aren’t trying to kill you Bella, honest!

She did say that her reactions to noise, particularly laughter, was sensory rather than hearing related.  That is good to know.

Friday, April 10, 2015

Spring Break

For Spring Break, Bella got to attend KITE, a camp through EnTech and Spaulding University.  She worked with one, and some days two, OTA students.  She had a fabulous time!  She loved camp!
I marveled at how far she (and I) have come!  Who would have dreamed that I would be able to just drop her off at camp so she could play and have a great time?  It was awesome!  So proud of you baby girl!


 We found some Sisters Forever Frozen shirts with Elsa and Anna on them.  They girls loved them.  It's so fun to dress them in something besides uniforms.


 Thank you so much for working with and loving my girl all week!


Thanks!  I loved it!


They sent home eCards every day so I could see all of the fun they were having!

Bella MondayBella WednesdayBella Day threeBella ThursdayBella Friday

Jason took all of the girls out to see the movie Home.  They enjoyed it!  Bella is still working on loud noises!


Sunday, April 5, 2015

Bella’s Week/Easter

Tech girl – Britt Nicole on the ipad and Frozen on the iphone

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OT – swinging with sister

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Dying Easter Eggs

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We got up at 1:30AM, piled the kids in the car, and drove out to Bec’s college to surprise her for Easter! 

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Hunting for eggs and Easter lunch

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Stopping in West Virginia to stretch our legs on the way home

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The all important selfies

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Monday, March 30, 2015

Ortho

We tried a new ortho in Cincinnati, OH today.  My Maps app said it would take me 1.5 hours from my front door to the hospital.  I figure that’s not so bad considering it used to take me that long in Houston if it we hit any kind of traffic on 45.  So we went.  And he’s not Dr. Mansour, but he at least understood her patella and what it is doing.

(Remember this is our 7th Ortho. Good ones are hard to find!)

He didn’t feel she had as much limb lengthen discrepancy as the other docs did.

He was glad that Dr Mansour started with her bones and not her soft tissue.

He feels like her leg is about as straight as it’s going to get.

The surgery to get her patella in the right spot is complicated and involved muscles, ligaments, and tendons.  It’s a pretty big deal.  And he’s pessimistic about it, he said.

Cincinnati Children’s is a teaching hospital (my favorite thing to deal with – can you feel the sarcasm?).  So mostly the doc talked with the resident about studies.  I have heard of these studies.  This is my 7th ortho.  Think about it, he says and let me know what you want to do. And he leaves.

The nurse is still doing computer work – so many of them do this now.  The doctor waltzes in, touches you briefly, says a few things, and leaves.  Meanwhile, the nurse has been diligently typing the whole time. I have learned this is the person with the real answers – the ones in English!  So, I start asking her questions.  Lots of questions.  The kind thing sits down and we visit for probably fifteen minutes.

You know this guy.  You work with him.  What does he mean by pessimistic.  No ortho has ever said that to me before. I explain all of the docs she has seen and our experiences.  And then I get the rest of the story. He doesn’t like the odds of the success rate of this particular surgery.  50/50, at best 60/40. He doesn’t like to put a kid through all of that, then a cast for 6 weeks, then therapy, for a 50/50 chance that things might improve.

Bella, like most kids with Trisomy 21, has extremely flexible joints with excessive range of motion. So if they go in and reconstruct this knee by messing with the quads, lengthening this, shortening that, and everything else they are going to do in there, it might not work. Or it might work for a time and then loosen all up and not work anymore. (Dr Mansour had mentioned this)  In this particular doc’s experience, repeat surgeries aren’t often successful.  (Dr Mansour was more willing to do repeats, but warned that scar tissue starts to become a problem)

Bella is lucky, though, in that she is teeny.   If Bella had a typical DS metabolism, she would weigh more.  The extra weight is particularly difficult on the knees.   She told me of a patient they have with bad knees who weighs 260 pounds at 19 years of age.  There is not surgical answer for her knees. She just needs to lose 150 pounds. And that isn’t likely, so she’ll ride around in a wheelchair for the rest of her life.

She said you really need to think about whether or not you want to do this surgery.

OK – if we do nothing.  If we take out the 8 plate in her knee, but nothing else, what is the outcome?  She’ll continue as she is.  Her patella will continue to ride around on the outside of her knee.  it will continue to collapse.  She’ll continue to need her walker/wheelchair for longer distances.  She will most likely develop arthritis.  As she continues to compensate by walking with her funny gait, she will develop functional scoliosis.

OK – if we do the surgery that only has a 50/50 success rate.

and it’s successful – her knee is stable.  She can walk.  She can learn to jump.  Yea!

and if it’s not – or if it doesn’t last – we have messed with the insides of her knee and she will probably develop arthritis. And other than that, she’ll be the same that she is now. As she ages, she’ll need a walker and a wheelchair.

So. after talking with the nurse, I told her, it seems to me that if we go forward, she at least has a 50% chance of having some improvement, even if it’s just for a time. She agreed.

She is going to ask the doctor if we can take out the 8 plate and do the reconstruction in the same operation.  She didn’t know – since the 8 plate is on the left side of the knee, and a lot of the work for the knee will be above and to the right.  He might feel that was too much for one time.  She’ll call me tomorrow.

Sweet girl.  I was so proud of her.  This was her second weight bearing x-ray and she whimpered but she didn’t cry!  She is doing so much better with doctors and hospitals.  I really think because it’s been a year since any major trauma!

My sweet girl and I

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And yes, I was distracted thinking about all of this on the way home and ended up down in Lexington, and then over to Frankfort, and then finally home!  Oh well!  Not the most direct route, but that is some beautiful country!  Especially right now as Spring is starting!

Saturday, March 28, 2015

Bella’s Week

Ready for school!        Everyone else is using their forks to eat Daddy’s birthday strawberry shortcake.  Oh well, grateful that she is with us!

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Daddy twisted his ankle so he rented a scooter and we all went to the zoo!2015-03-21 March 30 003

We loved the sea lions.  My crazy monkey!  Since food is not a big thing for Bell, while we ate, she explored the sea lion exhibit.

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She LOVES it when I carry her on my back.  “Back,” she’ll say as she pats me.  Happy thing!2015-03-21 March 30 070

Bella’s version of jumping – standing and then kicking out her legs so she falls.  Funny thing!

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Crazy girl!

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VIPS had an Easter Egg Hunt.  Bella and Joy wanted to play in Kids Town and in the sensory room.  They weren’t interested in eggs!

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