Bella’s Week

Monday we went to the park with cousins, Aunts, and Grandma.  Bella loved swinging.  Her little cousins and Joy loved “helping” to push her!

Bella loves her cousin Samuel

Bella went to see the orthopedist on Wednesday.  I have learned that both of the doctors that were recommended to us are considered “in network.”  What a blessing!  Paying for whatever is coming was really scaring me.  This is a huge relief!

Now we just have to wait for the clinical notes from the appointment and send them off.  We’ll see what happens next.

 

 

 

Making noodle necklaces in school and going grocery shopping with Brother – how we love normal things around here!

Dislocated Knee

Today we went to see the specialist that the specialist sent us to see.  Short visit.  Lot of tears during the x-rays.  Doctor comes back in and says, “She doesn’t have a dislocated patella.  She has a dislocated knee.  I can’t help you.  Go see this guy (in Seattle) or this guy (in Florida).”  What?  Scrambling, trying to keep him in the room long enough to process that and form a reasonable question.  Evidently, knees do get dislocated to the front or the back.  Usually in some trauma.  Congenital and chronic is very rare.   And hers is dislocated to the side.  He had never seen it – and based on his age – that’s saying something.  Down syndrome complicates things with our extremely lax ligaments.  Grasping for straws I asked about her practicing her standing and her cruising – is she hurting herself?  No, not right now.  But if you don’t fix this, she will.  Ahh…brain starts making connections. <flashback> Specialist that referred us here told me that she would need a total knee replacement and a year of intense rehab, but “no one will do that to her.”  Be prepared, he told me, that this doc is not going to be aggressive with her.  <back to reality>  So if he thinks we need to be aggressive, then this is bad.  Worse than expected.  OK.  So now we have to figure this out.

Have to contact the doctor in Seattle (of course the one WITHOUT email – at least that I can find   (and the one specialist highly recommends.  He’s worked with him in the past about orthopedic issues with DS kids). Have to contact the doctor in Florida.  Need to send them the x-rays and clinical notes and try to get as much information over the phone before we think about jumping on a plane.  Will private insurance cover this?  Will it help?  Will it be worth doing?  Watching her scream during x-rays makes me just want to accept that she’ll never walk and move on.  But if we don’t do something, will we hurt her more?   How long would we be gone?  What about the rest of the family?

Bella’s Week

Taking pictures just because….

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Joy joined Bella this week for Music Therapy – so much fun!

OT brought over this new toy for Alex, and Bella loves it!  She is so cute putting on her gloves.

I love to hike and be in nature.  Something I haven’t done a lot of in the last few years.  Now that Bella is doing so much better and has her wheelchair, we looked up paved trails.  There are many paved trails here in Houston!!  The fresh air totally wore her out – she fell asleep for two hours after our outing!  I LOVED that we all got to go!!

This little girl loves to dance to her Just Dance 3 game!!  She outlasted everyone!

Big sister Joy loves to make Bella laugh

Bell’s Week

We started the week off with a trip downtown to GI.  We have a  plan to get rid of nighttime feeds – so feeds four times a day.  I am so impressed!  How far you have come baby girl!

She is experimenting with her new chair – she is learning to maneuver it.  She likes to run into people and put her feet on the brakes!  Crazy girl!

She just wasn’t interested in PT this week.  We are finally checking out a new orthopedist this month.  We’ll see what he says.

 

 

 

 

 

The youngest five hanging out

Because I love this picture!

Back to school                                           “Helping” sister play her piano

Bella’s Favorite Song

Down Syndrome

As Bella continues to improve, I'm discovering a new little girl. The same fighting amazing warrior is there, but there is time and energy for this amazing little personality to start shining through. I find myself stopping and watching, marveling at this creature. I've always known she was an amazing fighter, but there is more to her. Buried underneath that fierce determination to live, a strong personality is starting to emerge. She is fun and silly. She is stubborn and ornery. And I see glimpses of Down syndrome. I used to forget that she had DS when I would list off her diagnosises. As she gets better I am seeing her tongue sticking out of her mouth, and expressions that are so much like Joy's. She is so cute. I have to admit I love a little face with Down syndrome.