Bella’s Week

Reading with sister                         Playing with Joy in the toy box

Just love this picture!  It’s so normal.  It’s what kids are supposed to do – get away from your line of sight and pull down tons of toilet paper.  I love how she is studying how it feels  - another first.

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Playing with OT’s new toy.  We call it the “turtle.”  She was a little uncertain with all of these crazy movements until we started singing “Row, Row, Row Your Boat,” then she settled down and enjoyed it.

ENT and Audiology  - pretty much a waste of time.  Audiology tried to do a normal hearing test on her – the kind where the kid has to actually participate.  Haha, very funny.  We tried.  She either fought as if they were killing her (putting in those tiny ear plugs) or ignored them altogether.  So we are scheduled for a sedated ABR in August, which is what we have always done.  The little info the Audiologist did get suggested that she still has mild sensitivity loss  - yeah, not worse, and totally something we can live with!  ENT, of course, couldn’t see the ear tubes he just put in.  He said she has the tiniest ear canals.  He was amazed that he was even able to get them in.  Oh well, just part and parcel of the whole Down syndrome world – tiny ear canals.

I got her the new Potty Time from the makers of Signing Time.  She watched it over and over and over and over and over again.  She LOVES Miss Rachel!  That stuffed Hopkins that you can see in the picture is the first stuffed animal she hasn’t thrown across the room.  She doesn’t like stuffed toys or dolls, but this Hopkins she will hold.

So exciting!  PT and a DME rep came out to measure Bella for a wheelchair.  Bella has her KidKart, and while it’s wonderful for lugging every piece of equipment around the planet, it’s big, bulky, and she has outgrown it!  So I was thinking it was time to move on to a wheelchair.  She has the trunk control now, she doesn’t need the extensive body support of other chairs.  Here in Texas you can only get a new wheelchair every five years, so this new one has to last until she is almost nine years old.  That is a lot of thinking about the future!  We used her growth charts to estimate that she will be 107 cm or 42.5 in and 20 kg or 44 lbs.  Her PT wanted it to be something she could move on her own – thinking independence here.  Move on her own?  Hmm….  She asked me if I had thought about a power chair.  A power chair?  Um, no.  She sits on my hip.  I’ve never consider that at all.  Problems with power chairs – they weigh 180 pounds.  They don’t break down, so you have to have a converted van, which I don’t have.  But we are talking about five years here.  And I could get two chairs – a manual and a power. So many decisions.

They brought in a manual wheelchair.  Granted, this one is a demo and way too big for Bella – but she thought it was great!  The PT put her in and tried to put her hands on the wheels, ah, no thank you, she said (first picture).  Then Sammi (same sister who is reading to her in the very first picture of the post) put her hands on top of Bella’s and put both sets on the wheels.  Then she moved her hands forward and the chair moved forward.  A light bulb appeared above Bella’s head and she was off.  Pushing herself all around the room.  I was floored!  Bella has blown me away again!  And look at that smile! 

We ended up ordering a combination chair. It has manual wheels, but when she gets tired (she is not going to outgrow her scarred and messed up lungs), we can pop off the wheels and throw on some power wheels and a joystick. Thrilling! It’ll be there if we think she needs it. Mobility! Wahoo!

We took the whole thing outside to make sure it fits in my van – very important! He’s coming out this coming week for Bella to try out the power chair. So excited for her. More control over her world.  Now I just need to make a sidewalk to our driveway!

Her sisters and PT watching her go – happy Mama!

  

Bella loves her little brother.  “Brother” is usually her first sign in the morning.  She loves his little room.