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.

Bella’s Week

She wanted to hold her brother – not too much longer and he’ll be bigger than she is!  Sleepy beauty

Grandparents and family came into town.  I was so shocked she went to total strangers and even gave her cousin her special “I love you” touch!

Sports Bella

 

After reading/looking at the pictures about how Josie over at Confessions of the Chromosomally Enhanced (last picture of the post) uses her gait trainer, I asked our PT about turning Bella around in hers.  Bella tends to lean way forward and just pushes the gait trainer with her arms and pulling her legs to keep up rather than walking.  We haven’t figured out if that was lungs, legs, laziness, or learned behavior.  But what a difference this new direction has made!  She has to weight shift (something she HATES to do) and has to use the trainer as a trainer and not as a crutch for her leaning.  This looks a whole lot like walking! Love it!  She actually went for a few feet!

 

Family Reunion Pictures – Jason and I had talked and talked about this gathering.  Normally we don’t take her to things like this, but she did great!  She was so excited to be there.  She knew it was something special and important.  I’m glad she came.  She stayed through pictures and lunch.  By then she was tired and ready to leave.

A great picture of Bella                   Signing “Grandpa”

Crawling over brother to give him his binky          Crawling on the floor

Bella’s Week

Introducing Bella to a frog.  She loves Hopkins on Signing Time, but the real thing is a different story!  You can watch the progression…

”What do you have there Mom?”          “Really?” 

“A frog?” Me signing “frog.”                  “No, thank you!”    Funny girl!

She has been super protective of her hands lately (sensory issues are back), so OT is working on that again.  Working on scooping!

Huge.  Huge.  Huge.  Protective extension to the rear (putting your hands back behind you to protect you when you fall backwards) – only about two years in coming!  Now hopefully she’ll do it again!  (Notice she did put her hands down on the trampoline – perhaps improved sensory tolerance?  Hmmm…)

Cardiology appointment was awesome!  Her ECHO was good.  Her EEG didn’t have any extra beats.  Her cardiologist said that she was great for her.  (Always an interesting statement to ponder.)  Really, though, the leaking valves are only leaking mildly right now.  She’s not too badly enlarged on the right side.  She said that she would give us a nice long break from seeing her if it weren’t for her pulmonary hypertension.  It’s the easiest way to measure PH, so we’ll have another ECHO in nine months unless she pulls something.  She was very encouraged by her valves.  She said the longer her valves behave, the more likely they are going to behave long term.  Yeah!  You can tell Bella wasn’t as excited about this visit as her cardiologist!  :)  I kept her on the vent the whole time we were at the hospital this time.  The last two times we have gone there without her vent she has gotten sick.  I’ll take those extra bacterial filters, thank you.

Signing “I love you!”                                           Swinging outside

What a week from a pulmonary perspective!  Monday she couldn’t stop wheezing. Tuesday she was able to tolerate some capping.  Wednesday she was on the vent almost all day.  Thursday I capped her and she crawled five feet and collapsed.  She was severely retracting and had to lay down to catch her breathe.  Friday she was fine.  What do I make of all of this?  What do I tell pulmonary next month?  Does she need to be on a ventilator?  Does she need life support?  I have been thinking myself in circles and then second guessing myself.  She does great, then not so great.  She has come so far, but are we ready to decannulate?  So much of what she has faced, she has healed from.  But her lungs aren’t healed and won’t.  At one point I believed the vent was her life long companion, now I don’t.  But I don’t think she’s ready to decannulate next month.  And then I wonder if this is all about me and am I the one with the vent dependence.  Ugh.  August 8th we see pulmonary.  I’m not sure I’m going to sleep well until then.  Where is the crystal ball?

Some videos

Joy and Bella playing ball

Bella signing her ABCs

Itsy Bitsy Spider and then she starts on her ABCs again

Bella’s Week

And on July 4th, three weeks after surgery, Bella came back.  Welcome back kid! 

Outside

For the third day this summer, Bella is healthy!  So we took her outside.  She and her sister posed for pictures, so I started shooting! 

My two girls…

Continuing to Improve

S l o w l y, but surely, she is getting better.  No more pain killers.  She’s still having her mystery pain at night.  Thankfully, we are headed to GI tomorrow.  I’m hoping she’ll have some ideas for us.

We continue to struggle with nursing coverage. Ugh.  Very tiring, physically and emotionally.

It’s funny the things you think about in the middle of the night.  Just some random thoughts:

Bella really likes light touch right now.  To give some back ground on that.  For the first year after she was discharged from the hospital, if you touched Bella it had to be with firm touch – no stroking, no light touch.  It totally set her on edge and she would freak out.  We did intense sensory work for ever!  Now at three and a half years old, she wants light touch.  She wants to be stroked.  She wants you to brush your fingernails up and down her skin.  When she wakes up in the middle of the night with her mystery pain, she grabs my hands and I start to stroke her skin.  While I’m sad she is in so much pain, I see how far she has come.  For that I am grateful!

Bella is starting to sing.  She has this little breathy low voice. (The low part surprised me!)  I have been trying to catch it on video – hopefully this week!  I love to sing.  Our family is always singing.  So this is another one of those things we didn’t think she’d be able to do with her trach that she is doing!  Wahoo baby!

Poor Bella is so easily over stimulated!  It might just be her personality.  She is a quiet little person, but she is also ornery and mischievous.  :)  She has spent so much time in her room with nurses that maybe she just isn’t used to the noise.  But she lives in this house – this house with nine people, plus nurses, therapists, RTs, delivery people, the kid’s friends, and constant activity.  When she is with the family, and we all start laughing, she panics and starts crying.  I’m not sure if it’s something she’ll ever get over or not.  Yesterday we went as a family to see Brave and left her at home with the nurse.  There is no way she could go to a crowded theater with laughing and talking and then add in the movie itself.  Will she always be like this?  Don’t know.  We will just have to see.

Love ya babe!