Saturday, January 07, 2012


Happy New Year!

It has been a crazy busy week in which I went exactly NOWHERE.

That is nowhere as in not to the hospital, not to the doctor, not even getting in the car once.


Very, very happy here.

Kaylee's reflux has not loved the hot weather and we have spent a bit of time cuddling, rocking and cleaning up vomit.  Lot of vomit.  Lots and lots of vomit actually.

It is heart breaking to see her retching and choking but in between all that she is happy, content and even occasionally giggling!  Or making a funny honking noise that I am pretty sure is her version of giggling.  She got a new rocker a few days ago which makes her sit up more and that helps the reflux a bit. 

Unfortunately there is no way to stop Kaylee's reflux right now.  She is on some medication to reduce the acidity to make it less painful and reduce the harm to her body.  Reflux is likely to be our longer term adversary.  I don't often think much past February and the big heart op (which scares the pants off me but not the surgeons thankfully) but really once we get past the heart op that is when we start changing Kaylee's feeding regime and trying some new things to help her reflux.  Unlike her heart problems, which have a definate fix and not much of a long term day to day effect on her life, reflux may have a pretty huge say in how we live our lives from here on in.  The fictional conversation in my head goes sort of like this:

Me:  Soooo, lots of people with CDLS have major life long issues with reflux, is that right?

The Other Me:  Yep, according to my research.

Me:  So Kaylee will have major life long issues with reflux?

The Other Me:  I don't know.

Me: OK, well, let's say she does.  There are things we can do about it right?

The Other Me:  A few things.

Me: Like surgery, medications, diet?

The Other Me:  Yes

Me:  And that will fix it right?

The Other Me:  I don't know.

Me:  So worst case scenario, how bad can it get?

The Other Me:  Really?  You really want to put the words "worst case scenario" and "Kaylee" in the same sentence?  Have you learned nothing?  That never ends well.  And anyway, there is no way to know right now.

Me:  Right.  So you know we MAY be battling this demon for the rest of our lives but you don't know that we will be for sure.  You know there are some things that help others in this situation that we may be able to try if we need to but you don't know that any of them will work well for Kaylee.  You know that it may not be a problem or it may be really, catastrophically bad or it may be somewhere in between but you have no idea which it will be.

The Other Me:  That's right.

Me:  You don't know much do you.

The Other Me:  I know I love my daughter.  I know that together with God and our amazing little family we will fight whatever dragons lie before us.  I know she has long lashes, fat rolls and a smile I'd walk over hot coals for.  And I know I love my daughter

Me:  You said you love your daughter twice.

The Other Me:  Yes, I know.  That's how much it matters.

Me:  Right, well.  I guess that you know something then.

The Other Me:  I know what matters.

Disclaimer:  I don't actually talk to myself ....Oh....Wait....Hang on....Yes I do.....Carry on.

 The other kids are all fantastic.

Erin is completing a project on germs and microbiology (school holidays this year will be February and whenever Kaylee's cleft gets fixed - love the flexibility of homeschooling) and is doing a great job.  She has really blossomed in the past year and has a confidence about her that is wonderful to see.

Billy is doing great with his reader and is now halfway through the grade 1 readers we have.  He is streaking up and seems to grow before my eyes.

Christopher is doing great too and is still Kaylee's biggest fan.

Anna is all of a sudden tall and beautiful and almost three.  I can't believe her birthday is in ten days.  What happened to my baby girl?

Andrew is joining the ranks of the walking.  He is now total BOY and goes at approximately 100 miles an hour whenever awake.

I have a new sewing machine that I am planning on trying out tonight.  I bought it to fill in all that spare time I have - HA!  I made a funny!

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