Bella’s Week

Music therapy – so cute – she held the bunny mask so she could see the picture.  No way was she going to put those little bunnies on her fingers but she was more than happy to put them back in the bag.  Really?  I have to dig for the eggs in that grass?

A little sensory work

I just loved this picture – it reminds me of an old picture of my Mom leaning against a car in that same pose.

Bella was very concerned about the girls jumping on the trampoline.  She was happy to be held to play “Duck, Duck, Goose.”

At the grocery store              Dancing in the car on the way to Brenham

Fireman’s park

My family

At the Blue Bell factory

At the tire park

At Grandma’s farm.  We went exploring across their 30 acres.  I carried Bella the whole way.

Easter morning

I told her to touch the egg.  So she touched it, but she didn’t grab it.  Silly girl.

New Ortho

Home from seeing the new ortho.  Excited about him.  He introduced himself by his first name.  Always love that in a doctor.  He talked to me, not at me.  He examined Bella.  He was really good with her.  He has a different approach than the last ortho.  He wants to do this in stages.  First, correct the bone alignment.  After she has recovered from that then we’ll work on the soft tissue.  He warned me a couple of times that her extra chromosome makes all of her tissues stretchy – laxity is a big problem we have.  He can’t guarantee that this will work, but I felt good about him and about what he was saying.  He wants to look at the x-rays and think some more and then call me back with the final plan.  I love that he is investing his time into this.  I showed him how she “walks.”  He watched her and he said, “She wants to walk.”  Yes!  That is what I have been looking for in a doctor!  Someone who took the time to see Bella and see what she wants.  I am not some crazed special needs Mom that wants her child to be normal.  No, I want Bella to be what Bella can be and what Bella wants to be!  I feel like this doctor was more realistic and admitted that a wheelchair may always be in my house.  But I feel like we can take her to the next level with this guy.  And he’s local - a plus for all of our follow up care!  I have a feeling, though, that if we correct Bella’s anatomy, she will blow us away, as she always does!

Bella’s Week

Wednesday, 3/21, was World Down Syndrome Day

                   (3/21 – three copies of the 21st chromosome)                      

Happy Day from us to everyone!!

We went on a home school field trip to CiCi’s Pizza – and yes, she did consent to taste it!

Bella likes to “help” Brother with his vision therapy.  Since he must put everything in his mouth, she thinks that’s part of the fun!               Lots of breathing treatments this week!

Bella’s therapy:  music, vestibular action, and some sensory play.  Can’t you just see the thought bubble – “and you think I should touch THAT?”

Teaching Brother Dynamite!

I just love you Brother!

Bella’s Week

Playing at a restaurant                            Sitting up at the table

Silly girl – she just won’t eat.  Part of it is she won’t feed herself.  Is that sensory?  I don’t want my hands to get dirty?  Or is she spoiled?  Princess Bella doesn’t feed herself?  She’ll take a few bites if you feed her but then she signs all done.  Her Speech Therapist and I are banging our heads.  She has all the skills now, just no desire.  Fun. 

Wednesday Bella and I headed down to pulmonology.  It was a terrific visit.  We are all so very pleased with how far this little one has come.  Her doctor loves her so much.  He always kisses her and loves on her.  She had just had her ears checked in this picture and wasn’t having anything to do with any of the love at the moment!  :)

This girl wants so badly to walk, to move.  She will contort her body in a thousand crazy ways to make it support her and that crazy knee.  When we were at Pulmonology this week we asked if they are done her clearances for her surgery.  They had never gotten them.  I called Scottish Rite.  Come on people!  No, they feel it’s more important for her to see a Developmental Pediatrician for a three hour workup before they will more forward.  For a knee operation?  What?  So I would have to spend eight hours driving plus spend the night in a hotel so that . . what?  What is the purpose of this assessment.  No one has a straight answer, so I have made an appointment with an orthopedic surgeon here in town.  Hoping he knows his stuff.  This will be our fifth ortho.  Please someone help my baby!

Trying out the big girl swing                                         New hot pink braces!

Being a crazy girl!

At the park

She has been grumpy all week.  Just off.  Then after the park her stats were in the low 80s and she was super junky.  Since decannulation she has refused to cough. We are constantly telling her to cough.  She just won’t.  A bunch of oxygen, some breathing treatments, CPT and some Brother cuddle time helped her a lot.