Thursday, April 2, 2009

Update


Okay so I had to throw in one more pic... Most kids hate hats and glasses... My son loves them! (Please disregard the shirt that says "I love my Mooo-mmy." I did not dress him, and do not think the reference to me being a cow or having milk is super funny.) If you look closely, you'll see we are at a RESTAURANT. Shocking, I know. You might not understand the extent of my neuroticism, so I'll explain.
Dax's 1st restaurant trip is actually part of a systematic plan I have to expose Dax to varying levels of air quality. It was a "moderate" air pollution day, and we sat on the deck towards the street during a non-busy part of the day. We positioned ourselves away from other diners, and made sure Dax did not touch anything, and no one touched him. He did exceptionally well, and only sneezed a couple of times when we first arrived. He actually did exceptionally well considering I dropped his oxygen about halfway through the meal, which jarred the tank enough to cause it to go in between numbers, leading to Dax not getting any oxygen for about... oh... an hour before we noticed, since he doesn't wear his pulse ox during the day anymore. On a good note, when we did realize it, we checked his sats and they were maintaining at 85-86 with no oxygen support. That's pretty exciting! Hopefully he sustained no more brain damage than the average Mexican restaurant patron drinking a margarita or two... And as he showed no signs of distress I think he did just fine. Pretty good for the former "blue boy" of the NICU!
Okay, so on to the real update, just wanted to let you guys know that the results from Dax's stress test came back, and he passed as we all thought he would. Now that we have that result as well as the normal hormonal panel, I called his geneticist and told her. She's very happy, and is going to try to coordinate with a doctor in Canada who has been researching cerebellar hypoplasia in premature babies to see what that doctor says and recommends. I'm excited to hear back from that conversation...
And I went to my appointment today... All's well, Ty's growing, and life is good.
As for our buddies, Kinsley is home now and doing much better. Thanks for the prayers! Payton is doing better after a couple of rough days. Please continue to pray for her heart and lungs, in addition to her tummy as she's been spitting up lately. I also want to add in a new prayer request today... There's a mommy blogger I follow who has a beautiful baby girl named Kennedy who was also diagnosed with cerebellar hypoplasia. Kennedy has been having some ongoing issues, and her mother received a devastating diagnosis this week. If the doctors are correct, Kennedy's brain will continue to atrophy and she will have a very short life expectancy. Please pray for Kennedy and her family, and I'm sure her mother would love to hear from you with words of encouragement and support if you feel moved to do so. Her blog is http://kennedybonomo.blogspot.com/ .
Thanks so much! Love you guys!

2 comments:

aunt wee wee said...

I LOVE, LOVE, LOVE this pic of Dax!!!!

Bubeaner said...

He looks adorable in his hat and sunglasses. My little one also loves his sunglasses. He probably appreciates them as protection from the Mommypaparazzi. And my theory is that they learn to "work it" from their days of having all the NICU nurses fussing over them.

May He continue to bless your home and family.