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

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!

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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 14, 2015

Loved This!

Saw this today and had to grab it!  This is so Bella!  She is one smart little lady, but she is so easily dismissed.  Yesterday at Speech, her ST asked me if they could do an Assistive Technology assessment on her.  She wants to get Bella a Dynavox. Sigh!  I have never wanted one.  She can communicate! She signed beautifully! She can speak now.  But with her weak core and diminished respiratory reserve, unless she is whispering, she is hard to understand.  I understand her though, but I am not with her 24/7 to serve as her interpreter anymore.  Speech told me, “She is so smart, but if people can’t understand her they will dismiss her.”  Oh ouch!  So once again I swallow my pride and say yes, bring on the AT so my baby can show the world how amazing she truly is!

Sunday, February 15, 2015

Bella’s Week

Bella had fun at therapy this week!

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Valentine’s Day Party at school

Her sweet teacher and teacher’s assistant come up with such cute games. Stacking candy hearts, using a socked hand to pick them up, throwing money on hearts, and a nerf gun (cupid’s arrows).  She really loved the gun!   Getting all dressed up in her Valentine’s finery!

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Practicing that violin – she loves it!     Working on her name with Play-Dough

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Her chocolates from Daddy.  She wouldn’t eat them, but she was happy to receive them!

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Happy Valentine’s Day Bella!

Thursday, February 12, 2015

In Bella’s World

This is from a bit ago, but I had to include it.  It’s so sweet.  They were both sick and had fallen asleep on me.  Sweet babies!  Joy painted this picture for Bella at school.  Joy gets so worried about her sister.

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Our family went to the Kosair Shriner’s Circus.  We had so much fun!  Bella LOVED everything!  She wasn’t interested in eating anything -  no cotton candy, no snow cones, no popcorn, no nachos.  She just wanted to see everything!  She kept poking her Daddy and then pointing at something as if to say,  “Look Daddy!”  She loved it!  With her wheelchair, she had a first row seat.  She even got to shake the hand of one of the performers and a clown came over and said hello!

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Someone got new braces.  She is not pleased about them.  I haven’t figured out why yet, but I think it has a lot to do with the fact that she can’t wear her pink shoes anymore! :(

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Bella and I  - just feeding her selfie addiction :)

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Tuesday, February 3, 2015

Bella’s World

Bella wants to be outside and play. I love the idea – the freezing temperatures, though, make me say, “No!” too often.  So whenever we can, we say, “Yes!”

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She loves the violin – even if her bow is backwards!

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My sweet girl, and her selfie addiction!

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Mom and Dad attended a workshop on Special needs trusts and wills.  So Bella got to play at Kid’s Town at VIPS.  She had so much fun!

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Just such a fun picture!

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Here in Kentucky, Kindergarteners have to go to the dentist and fill out a dental form for school.  Crazy, in my opinion, but my opinion doesn’t matter.  So we went.  While this dentist came recommended, she obviously doesn’t deal well with special needs kids.  Our form was completed, but Bella and I left crying.  It was one of those moments when I wonder, “Does everything have to be hard for this poor kid?”

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Therapy is so fun!

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Full days make for a sleepy girl.  She is so cute when she sleeps!

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