Wednesday, 09/19

5 month footprints

It's Oakley's 5 month mile marker! I can't believe it's been 5 months already. I also think back these 5 months, and think about what normal would have been vs what Oakley's normal is. He's never felt grass, never seen or pet a dog, he's never had a bath in the tub, or the sink. He's always been in a hospital, always has been connected to pumps, machines, and monitors. However, he has always been cared for by some of the most reliable people. He has been loved by so many, and has been spoiled with every cry. We've never had to buy diapers, or wipes. We have had the opportunity to sleep through the night nearly every night since his birth. We haven't had to call the pediatrician, frantic, in the middle of the night to see if a fever warrants an ER visit, or if we're just paranoid new parents.

Happy lil 5 month old

We haven't had to hold him down while he gets his immunizations (yet), and we haven't had to clean poop up off the walls or floors. I am blessed for the amount of support, and loving professionals who are paid to be there for our baby, yet take a personal interest in the well being of Trevor and me. I feel like St Luke's has now saved Oakley's life, my life, and Trevor's life at least once or twice each. We are so happy to be living in the time we are, the technology that will aid Oakley in managing his diabetes, Trevor too. The imaging that is so fast to let us know if something's wrong or if it's a false alarm. Although it sometimes seems we're being tested more than Job, we are also able to see the blessings that have been provided for us to perservere through the storm.

I would like to take a moment to ask for prayer for another little boy with IPEX. His name is Sonny, and I recently found his mom, Nichole, on the internet. We've been able to talk and comiserate and exchange stories and hopes for our little guys. Sonny has some different aspects of the IPEX syndrome, he has been afflicted more with the enteropathy (pathology or disease of the intestine). He is affected with malabsorption and had a spell where he had some blood in his stool. They were fortunate to be able to have him at home until he was to undergo chemo conditioning, as long as he was able to continue to grow and be healthy. He is now at Children's in Massachussetts, where they're trying to get him healthy enough to undergo his transplant, which is slated for October.

So, our little stint up in ICU caused a little hiccup in Oakley's progress. He was supposed to have his transplant moved to October 4th, and now they want to review his case at the beginning of October, and decide from there on when they want to start chemo and do the transplant. We are looking at the end of October if we're lucky.

Mommy's, Oakley's and Daddy's
tootsies!

As far as his current progress, he weighs 5.425 kg (which is about 11 lbs 15.3 ounces) and is 26 3/4 inches tall. So he's between 75 and 90 percentiles for height, below the 5th percentile for weight, and between 10th and 25th percentile for his head circumference (he's at 42 cm or 16 1/2 inches). I wish I was tall and thin! It's not so great on a baby though. His feet are huge, there's no chart for foot length, but I'm sure he'd be off the charts! His feet are now 4 inches long...for perspective, mine are 9 inches long, and Trevor's are 12 1/2 inches!

We've been very lucky to have visitors and family coming and relieving us from hospital duty here and there, we appreciate it so much!
Thanks to everyone who's been helping maintain our sanity, and thank you for your thoughts and prayers, we know we are not going through this alone!
Love,
Trevor, Sam, and Oakley!