Tuesday, March 8, 2011

Living life

The sun is shining through our windows, the outdoor temperatures are warming up and the shortened winter days are stretching longer with each sunset that passes. Spring is creeping in slowly, but surely.

For the past week or so I've felt an urge to get out, live life. There is a lot to fear in the Mito world. I can't help but feel we're always waiting for the other shoe to drop. Expecting an infection to pop up out of nowhere because we've been told it will happen. It very well may, we won't know till it's here. But if there is only one thing that I've learned through all our medical adventures, it's that our boys body doesn't play by the rules. He writes his own.

Spring and Fall are our prime seasons. We're able to get out more without being bundled stiffly within winter coats, scarves and hats, or not being smacked in the face with a wave of heat and humidity that makes you gasp. Wyatt struggles to keep his body temperature regulated, which makes it tricky to keep his vital signs where they need to be and uncomfortable for him during the winter and summer months. But bring on the Spring weather and we're ready to roll.

I may kick myself later for saying it out loud, but since starting TPN this has been the longest stretch that our boy has ever gone without getting 'sick.' Typically, he is always battling colds, nasty viruses, etc. throughout the year. One after another, kicking his body into over drive and using more energy than he has available. I think the welcomed break of germ fighting activity is likely a combination of relieving his body of the stress and turmoil of trying to make his GI tract function, and I'm sure in part to being away from the school setting. But either way, we'll take this glorious break of germs! TPN has been a blessing. His body is growing...his hair, his feet, his nails. His heart rate has settled 20bpm higher to a more acceptable range, his interests have expanded with the new found comfort...he's living life.

That's not to say that he doesn't have "bad days" when he hurts and/or is exhausted. To expect he wouldn't would be denial when knowing what his body is battling. But when looking at the whole picture the change in him has been a great one, both in body and spirit. It's been approximately 6, maybe even 8, weeks since he's had any J-tube feedings, besides some of his medication that's put through the tube daily. He's been experimenting with small lollipops and sips of clears here and there lately. They drain out of his g-tube rather quickly, and even still seem to upset his belly to some degree. 

Even so, I'm happy to report that we have not been in the hospital in nearly 2 weeks. That's a record in this house (!!)...and one I hope to continue on! Except for a few minor issues that we've taken note of and plan to discuss at our next appointments, an email to Dr. R (the new pediatrician that I spoke of in a previous post) to ease a concern and the usual labs, dressing changes and care that comes with the child, we've had a medical free zone here! It's been a rejuvenating change in our schedules.

Which is good, because we've been busy these past couple of weeks. We spent an afternoon bowling with family, as well as attended yet another of Jilly's twirling competitions. We happily watched as Wyatt was recognized and promoted to a "Bear" in Cub Scouts. I've also done a little digging recently and found a TaeKwonDo class that Maggie and Wyatt are both going to participate in come the beginning of April. Wyatt's a wee bit excited about starting this class. In fact he was a bit disappointed to tell me, after entering to win a trip to Nickelodeon's Kids Choice Awards, that he wouldn't have time to travel to L.A. to enjoy all the perks of the trip because he has his first TaeKwonDo class the evening before the awards show! We've also signed Maggie up for church camp again this Summer. She chose the equestrian theme and is excited to be free and on her 'own' for a whole week. We're trying to figure out a safe way for Wyatt to attend Boy Scout camp for 3-4 days, with Bryan, this Summer. Still thinking on that one. Otherwise, we've been busied with our everyday tasks, making sure to take quick 'recesses' to really enjoy the warmth of the new spring sun. 

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