How Cool!

This is wonderful!

There are actually seven different camps - how amazing!

Busy Week

Hanging out with the family:

And then Tuesday came.  We still don’t know why or how, but her belly was distended and she was so uncomfortable.  We did end up downtown at TCH for x-rays.  The ER doc and I read her chest x-ray together.  I reassured her that no, she didn’t have pneumonia – she just has atelectasis.  She said OK, but was withholding her judgment until the radiologist read her film.  Yeah, for us, the radiologist agreed with me (otherwise, it’s upstairs – ick!).  Abdomen x-rays I’m not as familiar with, but even I could see that her bowels were distended and full of air.  At least there was no perforations or obstructions.  So we went home.  She just has to pass all that gas.  Poor thing.

While we were waiting, we finally caught her doing her “So Cute!” on film.  We say, “so cute” and she puts her little hands under her face and grins.  It’s so funny!

Home!

Friday we saw Cardiology.  We used her ECHO from Easter and it looks about the same. We used her x-rays from the ER which are her baseline.  We talked about her chronically low BP and the low hear rate when she is sleeping.  They are really too low for someone her age, but with everything she is on, she is good.  She was also rigged up with a 24 hour heart monitor.  We always get alarms when we are hooked up at the hospital, but they don’t seem to last very long.  So we don’t worry too much.  We are just getting a good picture of her heart function.  Her valves seem to be behaving – good.  Her mitral valve is misshapen, it has a cleft, but it is behaving.  I asked her whether or not that should be on my worry list (because I had crossed it off a while ago).  She said that the longer it goes on behaving, the better (love the obvious!).  Sometimes they will act up when the kids become teenagers.  So we continue to monitor and hope that all stays happy in there.  Her PH pressures were pretty good for her. 

Silly girl is talking to her reflection!  She entertained herself for a really long time doing this.  One thing she doesn’t suffer from is a low self-esteem! 

 

 

I was talking to our nurse after the appointment.  Bella is doing so well that I want to cross things off my worry list.  Drop a few specialists, you know?  But really she is more like a Diabetic that has her insulin regimen perfectly figured out.  The diabetic is still diabetic, just doing well on all the proper medications.  That is where Bella is.  I, for one, am grateful for all the proper medications!

She, of course, pulled all of her leads off later that day.  We goggled how to put them back on!  Thank goodness for the internet!

Saturday – we pushed it and she got 30 minutes off the vent.  She loved the freedom.

These are from today – watching a new Signing Time (totally engrossed!) And trying to comb her hair after her bath – so smart!

Our Week

Our baby girl has lived on the vent all week.  I sneaked her out one day to swing for a few minutes – she just loves that!  Love ya babe!

Definition of a Line

pictures of the cute girl:

Two days this week we spent downtown doing doctor’s visits.  I don’t know why I get so emotionally geared up for these visits, but I do.  This week we saw GI, Endocrine, and Pulmonology.

The first two visits were rough on her.  We have to switch over to a non-heated circuit to travel.  The lack of humidity in her circuit did a number to her, but that day, thankfully, I had a really good nurse.  By the end of her shift we had had several treatments and she was doing well again.  Doctor wise we didn’t do much, switched around some feeding schedules to accommodate therapies, but that’s about it.  It’s also the day we had to deal with the resident that insisted on going down memory lane with us about one of Bella’s hospitalizations.  Because that stay was so riddled with medical errors caused by a fellow and unnecessary sufferings on Bella’s part, I don’t remember it is the same cheery light that this naïve resident remembers it in.  Hence the question on children’s hospitals in the last post.  Anyway.  Sigh.  It’s the way medicine is taught and practiced, so it is what it is and I have to left it go.

Pulmonology visit went fine – she is almost always on the vent these days.  That is not what he wanted to hear.  But it is what it is.  Every time we go we get a short little plan of what he’d like to do.  But lately she has been all over the place, so we get a different plan every time.  We are going to down size her trach.  We are going to upsize her trach.  It reminded me of teaching the definition of a line – you have to have two points and then you can connect them.  We never seem to have two visits pointing in the same direction lately.  She just doesn’t follow the norm.  So it goes back to this is Bella’s life and she’ll write the book. 

At church today in Sunday School (Jason and I take turns going to church and it was my turn today) our Sunday School teacher talked about writing rather than just reading.  He works at a college.  As an educator, he says, they see that if you just read something, you learn.  But if you process it and then write about it, your learning goes much deeper.  I can put my faith in Bella’s doctors, and I do, but really the only one doing the writing around here is Bella.  She is the writer of her story.

If I sound down, I am sorry.  It has been an adjusting week.  I find I go through these occasionally. Times when I have to readjust my expectations and goals.  Being a planner and a thinker is not always easy with someone who wants to write her own story.  I have to let go of where I thought we would be and embrace where Bella says we will be.

A therapist asked me this week if I ever question my decision to take Bella.  No.  She is my daughter.  It kinda upset me.  I don’t know, but I doubt someone would ask me that question if I had given birth to Bella.  But it doesn’t matter to me how she joined our family.  She is my daughter.  Yes, she is challenging.  She is also the most amazing and inspiring person I have ever meet in my life.  I love her so very much.  And if it’s hard for me to occasionally have to update my life’s plans, so be it.  Bella teaches me every day how to be brave, how to have hope, and how to live.   I love you sweet girl!

Oh – and in fun news!  Bella has learned how to give kisses.  She leans in, mouth open, and waits for her kiss.  Funny, funny girl!

Quick Question

Does anyone know of a good pediatric children's hospital that is not a teaching hospital? No residents, no fellows - just doctors that have finished their training?

Bella’s World

For about a week Bella played around with low grade fevers and sleeping a lot!  But she is doing better now.  So glad.

 

 

 

Love these sequence shots:

Before I went outside to do the yard, I moved Bella’s rocking chair so she could look outside.  She watched us for a while then started playing with the CAUTION Oxygen in Use sign.  These pictures seem like such a statement of her life – cut off, isolated, and unable to do so much, but she finds the joy in life. 

Bella’s shipment of supplies comes in these great big boxes – it has become a huge playroom for her.  She loves it! 

Love the window! Hi everyone!

 

 

 

My baby girl

Mobility

This is how Bella gets around.  Crazy sweet girl!