Bell’s Week

Tuesday morning brought labs – lots of them.   Poor thing.  Three adults to make it happen.  I just love the shades babe!

Happier times – swinging!

Music therapy

OT – coloring

Friday morning Jessi, Alex, Bella, and I left the house at 5:45AM to make it downtown for an abdominal ultrasound.  Here she is waiting and waiting for her turn.  The poor girl started freaking out the moment I wheeled her into the exam room and when those blue gloves came out, total freak out.  Despite all of my reassurance that they was a no owey day, she cried and panicked through the whole thing.   

I figure between the kid’s prenatal ultrasounds and all of Bella’s I’m pretty good at reading ultrasounds.  I asked the ultrasound tech if the gray blubs inside the gallbladder where the gall stones.  She told me, “I can’t tell you anything.”  That’s right.  But it was funny at the end of the exam she said, “OK, let’s turn her over so we can see if the stones move.”  OK, I get it.  Read between the lines Mom. I don’t expect to hear anything until Tuesday with Memorial Day.  So we’ll see.  I did find out that she has a family history of gall bladder problems.  What invaluable information!  We’ll see what GI says.

 

Sunday morning Bella and Joy watching you tubes videos.

She is doing awesome.  I have tried a couple of naps off the vent – and she does really well. Oxygen she still needs, but her heart rate is going down, which is great.  Her respiration rate is high, but I guess that’ll just be her baseline.  She’s anywhere from 40s to 80s.  Pulmonary is on Thursday.  Interested to see his plan for the summer.

Bella’s Week

Being normal – going outside, spilling whole boxes of cereal on the floor.  So fun!

Music therapy – only two more weeks till school is out  We are going to miss this!

ST – She is liking the idea of eating.  Biting and chewing, not so much.  Those are our next goals in eating therapy.

 

 

 

 

Cool sequence.  PT wants her to stand up so badly!

 

  I had to take this picture.  I am actually starting to believe that this machine might leave my house.  For good.  The idea of no life support.  Awesome!

 

 

Bella has been having some periodic pain.  It attacks at various times and is relentless.  She screams, “n-ah, n-ah, n-ah.” (Her version of “No!”)  She is inconsolable.  It has woken her up from sleep.  It has stopped her during the day.  After about 30 minutes to 1 1/2 hours later, she’ll settle down and go back to normal.  I want to rule out her gallbladder.  She has many gall stones, but they won’t treat until she becomes symptomatic.  So this coming week we have blood tests and an ultrasound.  We’ll see what we find.  Hoping we can figure it out and get this stopped!

Bella’s Week

Things are good here.  We are still pushing Bella to see what she can do and she is soaring!  Oxygen only occasionally, vent during sleeping and only occasionally while awake.  Wahoo!

Cuddles and outside time – sliding, jumping and playing with brother

Playing on the Wii with sisters.  You can’t see it because I didn’t take video, but she was jumping and dancing to the beat.

Music therapy

Being cute!                                                               Playing piano

Dancing with Jessi – if you stop, she’ll grab your fingers and have you start again!

Making Mat Man in OT.  She was saying a couple of the words!  We are all so curious if she will start vocalizing once she is capped and then decannulated.

When Bella won’t sleep for me, she will always go to sleep for Daddy!  How thankful I am for him – especially after long days! He is so tired in that picture.             Another Bella first – a bath in the tub.  Normally the nurses and I just bathe her in the sink.  She is tiny and still fits.  But we are thinking in a forward direction these days, so I plopped her in the tub with her sister, being careful of her trach for course.  Fun!

 

Now that I have accepted that decannulation is in our future, I want it.  Our next steps are capping during the day and staying off the vent while sleeping.  So I tried a small nap this afternoon.  Stats of 97, Heart rate from 67 to 119.  Pretty impressive little one!

Bell’s Week

Bella and Music therapy.  She simply adores it!

OT – working on auditory processing and different textures.  She loves the OT’s mirror!

PT – what an amazing thing is a slide!

Loved this – she is checking out a caterpillar!  Studying it so closely.  Later in the week, she saw another caterpillar.  She watched it, then signed “caterpillar", and then “butterfly.”  She is a genius, I tell you!  :)

A member of Bella’s biological family has reached out to our family.  We are so excited for Bella.  No one can have too much family!

Bella has done awesome this week off the vent.  You are doing it Bell.  Every day you are growing and getting stronger – and mischievous.  This little one likes to tease and play games!