Gav’s Numbers Off Kilter…New Addition to Our Family.

How is it that the days can sometimes feel like they can take forever, but the years seem to go flying by? I can’t believe that we are into November and the snow is beginning to fall and the mismatched mittens and itchy wool hats are being retrieved from the basement to be thrown throughout the house at the end of the day.

Lauren is two months into kindergarten now and is adjusting well. She came home the other day with an announcement after I asked her how her day was, “I have a boyfriend” she said. “He’s totally into me”. So the next day, being the mother bear that I am, I checked in with her to see how things were going with her new man, “I think he kinda broke up with me”. She seemed unphased by it citing the other kids she played with at recess instead. The dynamics of five year olds are eternally entertaining. She has come to the conclusion that Jay and I stay up at night and do all sorts of fun things without her. So around the breakfast table she always asks what we did the night before while our sleeping beauty was laid to rest. It’s always tempting to come up with some fun vacations, or pony rides in the kitchen, but in reality things have been a little off kilter as of late with Gav so the stress seems to be leading me to an early bed time, and middle of the night research as I used to do when Gav’s dialysis machines would incessantly beep.

We have been having a buffet of new issues arising with the Gavinator, and if they were all singular I may not be as worried, however it seems to be a rash of unexplainable that has left me, shall we say “jumpy.” After a while, you start to become an expert on your child, and you start to feel this pit in your stomach, and although you know that clinically there may be no signs of immediate distress, you can feel it looming. I think that one mother said it best (Thanks Jenny) that I am a Gavinologist, and things seem to be heading a little south in his health, but not deep south (I hope). He has had two heightened creatine levels which indicates the function of his kidneys are decreasing. His eosinphils are double the normal range so that has left him uncomfortable and itchy as of late and he has no measurable mycophenelate which is one of the three immunosuppressant drugs that keeps his body from recognizing the foreign kidney and attacking and destroying it. Despite the combination of these three factors, Gav still is a functioning, wild and crazy 2 and half year old, but he’s just so ever slightly off kilter.

I think that is what makes this disease so sneaky. On the exterior shell, they can act and look just fine, but inside the disease is always there, lurking and ready to destroy at any minute. You can go from fine to horrible in 60 seconds. It is a constant reminder that a transplant is not a cure, but a way to continue to live with the disease. Sometimes, after a while, you want to deny the pit in your stomach as paranoia, so you can continue to live in your happy bubble of denial that your child is better (and he does feel better), but the reality is that he will never be fine. We’re keeping an eagle eye on him and hopefully, if anything arises, we can extinguish it fast.

On the exciting front of the spectrum of life, we are getting ready to welcome a new leading little lady into the Winslow family at the very tail end of March. Jay and I got our first peek at her yesterday and as of right now, she looks, happy, healthy and active. I am convinced, that she will only grow happier in the upcoming months with all the turkey and Christmas cookies that lay ahead in her future (they’re not for me, they’re for the baby)! We wish you all a Happy Thanksgiving. We have started the long scroll of things that we are thankful for this year!

Jill

Advertisements