Monday, February 29, 2016

Art night 2016.

This year I opted out of teaching art in my kids' classes.  With my church responsibilities and, uh, having a baby, I just figured it would be too much.  I have missed it so!  BUT, as many friends of mine fretted and fussed over the annual art night, I was relieved that I did not have to live at the school all week in preparation, mounting and laminating artwork, putting up gallery wrap black paper and displaying three classes of artwork oh so beautifully.  Usually by the time art night rolls around, I am so sick of artwork and the school that I'd just as soon not attend.  
So this year when I was not one bit invested in the outcome, it was a brand new experience, seeing the displays for the first time, praising my kids artwork, feeling immense gratitude for the parents who took the time to teach them and break their backs getting it all up on the walls...
Thank you from the bottom of my heart.  I know what it takes and I am indeed grateful.


 

 

 

Saturday, February 20, 2016

Coincidence? No.

Transitioning Jack from breast milk to formula was nothing short of a nightmare.  We started with the inexpensive milk-based formula we could buy in bulk at Costco.  Though we tried to move slowly, before long Jack was a gassy mess.  No amount of gas drops or gripe water could make a dent in his discomfort.  Some family members had had success with a hypoallergenic (milk-based) formula.  It breaks down the milk proteins to make them easier for young tummies to digest.  Within a few days on this formula, his mood had improved greatly but within a week he had terrible diarrhea and a sore bottom to boot.  Off to the doctor for some answers.  She recommended soy.  I cringed.  I'd heard horror stories about soy and its effect on hormones.  Still, we weren't left with many alternatives so we gave it a shot.  Miracle cure-no gas, no diarrhea, no reflux, colic significantly reduced...it was like magic.
But still, all my reading got into my head and I tried to talk myself into thinking that maybe he needed a bit more time to adjust to the other formulas; perhaps the gas could be mitigated. 
Nope.  His body did not want anything to do with milk-based formulas, even when the proteins are broken down.  Soy it would have to be.  I trusted that because I was praying and seeking to do what was best for Jack, I would not be led astray.
The other day I started doing a little digging, wondering if I was poisoning my son.  I contemplated the possibility that perhaps soy is exactly what Jack's body needs, otherwise why would it have so vehemently rejected other "sensitive" formulas.
As it turns out, a decent number of studies have shown that soy, in fact increases bone density and reduces fractures in post-menopausal women.  If bisphosphonates(the drugs Jack will take) have been reported to do the exact same thing, it appears that soy IS what he needs.  Pretty awesome.  And not a bit coincidental, methinks.

See, look how happy he is!
 

Wednesday, February 10, 2016

In other news...

Jack got his cast off last week.  I was doubtful that it would have a significant effect on his mood - perhaps I didn't want to get my hopes up.  But he appears to be a new man!  Almost.
He and Eve had a moment after church last Sunday.

Here's to many more happy moments with this little guy - he is such a joy in our lives!

Thursday, February 4, 2016

More questions than answers.

Today we learned from the genetic counselor that Jack's test results indicate that he does, in fact have a mutated gene for OI, and that it is most likely type III.  While there is still a huge range within that subcategory, we do know that most type III cases are more severe and less common than other types.  This was not a surprise, given that Jack presented with fractures at such a tender age, but it is a bit daunting, as it could manifest in a number of ways.  Type III OI patients can have between dozens and hundreds of fractures in a lifetime.  They can be wheelchair bound or walk unassisted and everything in between.  Jack might require rods in his bones to straighten them out.  He will likely get regular IV treatments of pamidronate, a drug used to treat osteoporosis.
We don't really know what life will look like for Jack and will meet with the geneticist in two weeks to more deeply discuss what lies ahead and what steps to take.  Here's a link to a cute video we watched with the kids tonight to teach them more about their baby brother's condition.
And, just because he's hilarious(and also has OI), a message from Kid President.