Bella’s Week

Hanging out…Starfall and Signing Time .  She learned the sign for movie this week.  We are in so much trouble!

Pulling up and learning to color!

The little stinker – the PT builds towers that she has to stand up to knock over.  Well, she did that for a while, then she got tired.  She sat there on that little stool and surveyed the green box.  Then she reached out and lifted the lid – mission accomplished, towers down.  I was laughing so hard!  Don’t work harder, work smarter, right babe?

Playing with her sisters – some of her looks are so funny!

Hanging out with Daddy                       Playing in the living room

    

Sammi had a special thing at church so we decided to bring Bella. It was only her third time there.  Such a big girl!

Pretty good week.  We are trying to use the Passy-Muir valve more.  She tends to huff and puff a lot while on it.  I can’t figure out how that is good for her Pulmonary Hypertension (probably isn’t).  Thursday she decided she was done with working so hard.  We stuck her on the passy and walked into the other room and she turned purple.  OK, babe.  Message received.  The vent is our friend again.  So grateful we have it.  Breathing is tricky and hard work.  Got the memo.

On a side note – some people talk about blue babies.  Bella doesn’t do blue.  Purple, yes.  Gray, yes.  Not blue.  That’s OK.  We all have our favorite colors, right?

Sometimes it seems like Bella is telling me, you handle the breathing and I’ll progress and blow away everyone’s expectations, just don’t push me on the whole breathing thing, ok?   Sweet girl.

Bella’s Week

 

Cuddling with her texting sister                                     Reading

Showing off her cute hair                      Getting kisses from her sister

Talking to Kris, our good friend              Being adorable

Bella’s room was our former formal dining room.  Well, she has outgrown her space.  So we painted the former formal living room (aka Bella’s storage room/piano room) and turned it into Bella’s room.  And her old room will be her storage room.  Bella comes with lots of “stuff!”  She likes it a lot better – there is more space to get into things and to pull off the vent!

This was Bella’s opinion of the two trips we had to make down town this week.  Sweet girl.  We had an abdominal ultrasound.  Looking forward to the results of that one.  Between that and the multiple samples going into the lab, we are hoping for some answers to our tummy issues of late.

Second trip was to Pulmonary.  I think we have decided that her need for the vent is more of a PEEP issue than an oxygenation issue.  She said the passy muir valve would help to maintain PEEP whereas the HME will not.  Maybe why we can’t seem to do HME trials for very long.  Bella doesn’t like the Passy.  It feels different and she panics a little.  But armed with this new knowledge, we tried it again and talked her through the adjustment period (so grateful she is getting older and smarter).  And she has done beautifully!  Yeah for you Bell!  They want to do another bronch and have her stay overnight in house so they can test some things out on the vent.  It’s a plan.  I love plans!

My noisy Bella – she likes to hear herself – we like it too!

A Fun Week

Our nurse thought these pants made a great hat – hmmmmm, says Bella

Playing with sisters….Bella is getting to bored of little baby toys.  Time to bring in the big girl stuff!  (You can tell we hadn’t had our bath for the day!)

Working on that standing!

Our family’s trip to the beach

Hey Mom!                                           So excited to come along!

On the ferry                                            My six girls all together!

Hanging out on the couch at the beach house……………so tiring!

Playing on the computer with Sammi…………………..yes?

I will stand up!  I will!                      Outside with Daddy for a second – outside!

Reading with Lizzy………………………..back to my book

Her two greatest loves are Signing Time and books.  Combine them into one….the Signing Time books that I ordered for her came this week.  Wahoo!!

Bella’s Week

Some of the many faces of Bella:

PT:  I want to cheer.  I want to scream!  This is my daughter, Arabella Turpin.  She is standing! Yes, my vent dependent daughter.  The PT’s hands are not touching her.  They are there for support.  She is leaning against the ball – but she is standing!  I have a couple of doctors that I would love to send this picture to.  See!!!  I told you so!!! But….that’s not nice. I still want to do it! 

We need a knee brace.  Something to support the muscles and ligaments above and below the knee.  Since I can’t get any from a doctor, I bought two elbow braces from the store.  They aren’t perfect, but they give her the sensation of support for those poor knees, and the result is magical!

Being the good Mama that I am, I actually followed the advice of the PM&R doctor and asked the orthotic to come out and measure her for AFOs (which aren’t what we need – argh!)  She came out, saw my beautiful babe working with PT, looked at the order for AFOs, and said…..she needs a knee brace.   AHHHHHH!  music to this Mama’s ears.  So she measured her for one.  I think it’s this one.  Since PM&R doesn’t think she is ready for this step (tell that to my daughter), we are going to see if her PCP will sign the order for the knee brace.  Wahoo!!!  So grateful!  And grateful that we did what we were told and went and saw the docs and followed their counsel – otherwise we won’t have known about this brace!  Yeah!

Another huge first – blowing through a horn.  Another “this should be impossible for you” moment this week!  Wahoo girl!

Playing with the fam – look at those knees – we have worked so hard on that!

Visitors –she is so curious about new people!  Reading with Jessi

My beautiful Bella – determined to be her very best.  We are trying to keep up with you love!

Love ya!