Christmas

We tried a new hair style for the family Christmas Eve party.  (thanks Cammie)

She was able to stay with us for the whole party – I was so surprised.  During our family’s dress rehearsal (haha), we were all laughing so loud that she started to cry and I had to take her to her room.  But she did fine for the party when everyone was there.  So grateful!  She has come so far!

 

 

Christmas morning!

Merry Christmas Bella!  We love you so!

Mama!

She said it!!!

(thank you Passy Muir valve!)

Bella’s Time

Blowing bubbles with Speech

Pulling to stand!  (ignore the feeding pole right in the middle of the shot!)

PT thinks she needs to learn to crawl up stairs.  Ugh.  She wasn’t interested (terrified would be the right word) until I brought out the Signing Time jewel case for her to chase.  It’s all about motivation with Bella.

A beautiful Saturday day we brought her outside.  She adores the outdoors!  Sleeping on Daddy

I’ll go anywhere if you bring the ipad!      Swinging!

Waiting for Cardiology and watching, what else?, Signing Time.  We got a great report from Cardiology.  ECHO unchanged.  Heart looks good, right ventricle slightly enlarged – common for kids on vents.  Continue to watch those valves.  She said her heart looks good enough for working on her vent weaning.

She’s been doing really well.  I am grateful.  Then she pulled a little episode and scared ten years off of my life.  Emotionally, I’m not as prepared for the crisises as I used to be.  She has been doing so well, that I move to that happy stable place and then wham! she reminds me not to get too comfortable there.  I think that’s why all this weaning talk has me a little freaked.  I feel safe where we are.  I’m afraid to take that step forward.  It’s always two steps forward, one step back.  And I don’t want that step back.  Anyway, I‘ll put on my big girl face and move forward when it’s time.  Thankfully, it’s not time yet.

So what did she do?  I’m still not sure.  She decanulates at least once a day right now.  It’s no big deal.  We pop it back in and move on.  But this time there was a crazed, unfocused, not there look on her face and tons of bright red blood and mucus coming out of her mouth.  I did everything I was supposed to do, and I got her stable and breathing.  But it was so weird and scary.   Besides the not breathing, it was the panic she was showing that really scared me.  Compared to what so many kids go through every day, it was nothing.  Oh well – the rest of the week she was happy and well.  I can’t complain.

Here’s hoping for a great Christmas for Bella and everyone!

Bella’s Week

Just like everyone else, she is a junky, wheezy kid.  Tis the season!

She just loves her CPT! 

Huge!!! A first drink!  (There was about a drop of water in that cup, but still!!!)  Wahoo!

Eating carrots…she gets so excited and then eats maybe a teaspoon.  Oh well, it’s a start.

Then feeding therapy turns into play time

Hanging out with sister!  Love that smile!

She’s been doing a lot of sleeping of late – I blame all of the congestion!  We are slowly increasing her feeding rate in her G during the day.  Wow – I forgot how much she doesn’t like change.  For the second time in two weeks, the ER was mentioned for this bloated tummy.  But I vetoed that.  I stopped her feed, put her on pedialyte, gave her some meds, and hoped for the best.  Poor thing.  She worked through all that gas again.  I hate that each tiny change plays havoc with her system.  We are back to distended, but not hard.  We’ll figure it out together Bell.

A new experiment.  I haven’t been that pleased with her homebound teacher.  So I’ve decided to do a lot of supplementing.  I am so excited!  I spent the weekend gathering stuff for us to do school.  She is such a sponge.  More books and time together?  Sounds wonderful!

A digesting post (not GI) part 2

And then there is this machine….How I love this machine.  It is our lifeline.  Pulmology says most kids like Bella are off of this lovely machine by now.  Yet here we sit, with a set breathe rate of 20.  I have all of her settings memorized – because they have never changed.  Not since we got on it in 2009 (except ICU days, but they don’t count).  So more tests in January.  But I’ve been thinking.  Is my love affair with this machine holding her back?  Weaning is pulmology’s goal.  It’s a great goal.  Truly, I would love to see her off too.  No, I don’t relish that my daughter is alive because of portable life support, but I am so very, very grateful that it’s here.

What’s the problem?  Pulmology wants to push her.  I want her to lead.  This is the problem we are having – an incompatibility with our approaches to weaning.  I feel like pulmology sees two lungs and a heart.  I see progress being made in all aspects of her life – school, mobility, feeding, speech, life in general.  If we push her too much, she lays in bed and breathes.  That is not a life.  Quality of life is what I am after.  That machine gives her the extra strength to have the energy to do the things that make life worthwhile.  But that is my opinion.  In my head she is a complete package, I can’t let the focus become solely her lungs, or all the other parts of her life would slip away.  But maybe she could just push through it and get off.  At what price?  How much energy will that take?  How sick will she get in the process?  So many things that doctors have done to her have come with a price with long lasting consequences.  Why can’t we just let her be and let her lead the way?  Am I holding her back?  I am afraid to find the answer.

A digesting post (not about GI)

 

Our PT came by and we measured Bella for one of these – a Riftin Gait Trainer.  Thrilled would be the word to describe how I feel about this!  Ignoring what Ortho and Physical Medicine and Rehab have told us, she does her own thing.  She wants to be mobile.  She wants to be out of her room.  She wants to go.  It’s going to be a long road, but this girl will move on her own power in an erect position. 

I am still searching for the right ortho for her. I have to find someone who will see Bella – not all the machinery that comes with the package. I got a new name this week. He is outside of TCH, and I’m totally fine with that.

This weekend one of my other daughters broke her wrist.  We took her to an orthopedist that goes to church with my sister.  He’s really great.  While I had him face to face, I asked about Bella.  He and his OPA were pretty amazed by her need – not as simple as I was hoping.  But he gave me the name of (in his opinion) an excellent pediatric ortho.  He said with something this extensive we need a really good pedi ortho. So we’ll make the appointment and we’ll hope.

In the PTA’s opinion we have to build up these legs and get her up before she gets bigger and so out of portion that it become very, very difficult for those little legs to support the increased mass.  So we work hard.  Three times a week hard.

I’ve been wondering what my motivation is here.  Is it just to prove the doctors wrong (again)?  I don’t think so.  After examining myself, I think it’s because she wants mobility so badly – and I want her to have anything she wants.  There are so many things I can’t fix, but I can fight for this one.

Our PT and our PTA trying to figure Bella out….which muscles are weak, which muscles are tight, are there any joints that aren’t lax?

This, on the other hand, does not have me thrilled.  This is a Dynavox.  Assistive technology to help Bella communicate.  What?  No, Bella signs.  Bella sometimes even says a word or two.  She’s amazing with her signing, in my opinion.  I thought that was the direction we were going.  Speech brought this up.  We did an eval and this came up.  She was hesitant to talk to me about it.  She thinks it will help Bella.  I’m having a hard time swallowing this one.  I don’t want her communicating through a box.  I am excited it’s out there for those who need it, but I thought we were headed a different direction.  Oh Bella.  What do you need?  Where should we go on this one?

Bella’s Week

It has been too cold to go outside and swing, even for a second.  So this just has to do.  Not what she wants, but at least she’s swinging.

 

Music Therapy Evaluation – I’m so excited about music therapy!  She loves music.  I think this is going to be great.  She responded well.  After all the paperwork is done (January probably), she’ll get a half hour once a week.  Yeah!  She loved the drums and the guitar!

 

 

Therapy – note to self – no bangs on this kid!

 

 

Can’t you just hear it?  “Why do they put me in these positions and leave me? Who cares if it’s a cute picture?”

 

 

 

 

Had to blog about this – this is sister’s 16th birthday party.  Those are ten teenagers hanging out, eating pizza, playing games right next to a ventilator and feeding pole.  And not one of those kids even blinked once.  This is Bella, Becca’s little sister, right in the middle of the party!

In other news – GI visit.  Increased the rate to g feeds during the day. Basically no growth, a small loss actually.  Looking at the DS growth chart, she should sit here hovering just under or at 10 kilos for the next year.  There isn’t a lot of growth expected between three and four years of age.

I asked about getting her off of Peptamen Jr and onto a blendarized diet.  She has very hesitant to do that.  I can understand her position.  Technically, Bella is Failure to Thrive.  They want to control every calorie and fat gram in her diet, not leave it up to me.  I get that.  But she came up with a compromise.  There is a commercially available blenderized diet called Compleat.  We are going to switch over to it in January.  She wants to do the change when we are in the hospital so they can monitor her.  Sigh.  Not looking forward to this hospital stay.  Oh well.  I am a little worried because while it is gluten and lactose free, there is milk protein in it.  I don’t know if she will tolerate that or not.  She did say that a lot of kids outgrow their sensitivities by three.  I don’t know.  A lot of kids outgrow their vents by 3 too and we are still here.  I don’t know how her GI tract will respond to “real food.”  She’s only really done well on Peptamen.  I can hope.  I do think it’s a step forward toward a more natural diet.  We’ll see what Bella wants to do in January.

Oh, and Pulmonology called in an antibiotic this week.  Why?  Based on her trachael aspirate, she is growing this funky bug and they wanted to treat it.  I called back.  We haven’t had a trachael aspirate since October.  Yep, from that culture.  Are you serious?  Makes me crazy.  How I wish Bella could have a pediatrician.  One person that was responsible (besides me).  Not her PCP, her Pulm, her GI, her Endo, her Cardio, plus the others.  One person.  Because things fall through the cracks – like now.  And we are taking meds two months later.