Haley’s Giggle

Haley turned 2 today, and what a two years it has been for this adorably vivacious girl.  Of course, characteristic to her life thus far, she ushered the day in with a colonoscopy/endoscopy. No fun at any age. And hearing her scream the moment I even tried to put on the gown, I was hoping by this time she would have gotten used to all of this by now. The look that she gave me when i put on the gas mask over her mouth was the same one she gave me when her lungs failed. For her, it is all still the same. luckily, we adults have the benefit of perspective, and so even though her screams and facial expressions still tear my heart open, I am able to ride the wave better than she can, and able to give back some of the strength she had so ofetn given me.

The reason for the procedure was to check for GVHD of the gut. She’s still not eating much (though her blood levels indicate good nutrition), and so it was important to findo ut what was going on before they insert a feeding tube into her, which has about as good a chance of helping her as a coin toss.

results of the biopsies will be sometime next week.   

 In honor of this day of appreciation, Haley has earmarked a lot of toys to be given away to charity. Unfortunately, the giant stuffed Rottweiler was not picked. Ah well, perhaps next year.

Thanks as always to Grammy for providing the strawberry shortcake, and the balloons. Thank you to everyone who called, emailed, and texted your birthday wishes– it means a tremendous deal.

 And to a new found CAMT survivor who found us online, congratulations– 3 years out!  

Perhaps just coincidence, but the exact moment Haley was supposed to get prepped for her colonoscpy/endoscopy, she suddenly developed a one-time fever. Her rescheduled procedure is sadly on her birthday (june 26th), but if it’s going to help explain why she still isn’t eating much, then it will be a happy day.

To prep Haley for this procedure, which includes a biopsy, she had to fast since midenight the night before. And for a kid who barely eats, that’s an eternity.  So no fun for her, even before they do anything invasive.

We’ll of course keep you all posted.

She’s as happy and wonderful as can be, and aside from the walking and eating, is developing quite quickly. She’s very knowledgeable about her shapes, especially heart balloons, which are her mother’s specialty. Like most younger siblings, she has taken up some of Anna’s likes, such as Barbies (good lord). And because she has advanced fine motor skills, loves to draw (and I don’t have to worry about her eating the crayons, since she still won’t put anything in her mouth), and loves anything with buttons. She’s oh so much more than these things, and it’s hard to describe her bubbly personality without experiencing it first hand. But the worry was always cognitive or social issues, and perhaps they will manifest later in life, but so far there is nothing we see as cognitively delayed in anyway. Quite the opposite, in fact. It’s not every almost two-year old that knows how to access my cellphone messages.

 A quick shout out to Dave who left the hospital and doing wonderfully. We’re all still thinking of you. And to Josh in NZ– keep up the great work!