Friday, April 15, 2011

A week of firsts.

~ Last weekend was the first of the firsts. The boys had a sleep over at the Natural History museum, sleeping next to the dinosaur bones. It was a Cub Scout event for two of the younger Den's. We packed Wyatt's needed equipment for a night, along with the typical items needed for such an experience. With the boys dressed in uniform, the girls and I said "goodnight" to them for the evening.

Us girls promptly changed into our PJ's, preparing for our first all girl slumber party...NO boys allowed! While talking with the giggly pair I asked, "What should we do first?" Jilly exclaimed in her biggest voice, "EAT!!" And after more giggling ensued, we did just that. Earlier in the day a trip to the grocery store was made to gather our favorite foods requested for this event. We carefully prepared each, displaying them on the dining room table, but not before making our own little camp setting in the living room. We were now ready for our evening of movies and slumber party fun.

We all had a great time, the boys at the museum and the girls at our slumber party. And not one of us had enough sleep, but that was part of the fun...according to the children.

~ Monday came too quickly and thrusted us into the beginning of another week. However, the weather was beautiful for that first day of the work week. It was a quick peek into the late spring and early summer warmth, before quickly changing back to a more seasonally appropriate rainy state. We took advantage of the first glimpse of summer-ish weather and spent a short amount of time outside enjoying the sun. Until it was time to return inside to cool the boy off with ice packs in an effort to bring his rising internal temperature back down to the acceptable range. At another point in time that evening (not related to temperature) we also witnessed an event that we've seen happen recently when Wyatt's body becomes 'too tired' to breath appropriately, resulting in a racing heart and a boy who is laboring to breath. Thankfully, we're able to get him through these events with the respiratory support that we have here at home. But my mommy radar has been quietly alarming these past couple of weeks as we've seen these events a few times now, coupled with watching his heart rates rise to new highs and very rarely fall to his "normal" anymore. Something is up. 

~ Tuesday morning we took a trip to visit our home away from home to see the GI doctor. We haven't seen or talked with her for a couple of months now...another first. Dr. R, the doctor that had taken over "point guard" for Wyatt's medical team has done just what we were hoping would happen, in leading the team and being our "go to guy" for the many issues that need continuous monitoring. Thus, taking the pressure off of the specialists and having the ability to look at the whole child, beyond each individual specialty area. The GI doctor was very happy to see that we've reached a more 'stable' point for the time being, not without it's ups and downs, of course. But not being admitted to our trusty wing of the hospital every couple of weeks, either. It was a good appointment...catching her up to where we are now and with what's been happening. We'll continue to see her every few months for the time being, though I got the feeling that may end after awhile.

~ After the story of our experience with the YMCA's Tae Kwon Do class was passed around the community, there were plenty of people who were upset by what had happened. We're still in the process of talking with the YMCA, though I do get the feeling that my last attempt of contacting them has been ignored for the time being. But through this frustratingly absurd event came about something great, another first. We were approached by one of Wyatt's teachers in the hall during our weekly school visit this week. And within our conversation she mentioned her husband was connected with the local little league association and it was expressed that they would be happy to have our boy participate. I must admit, baseball has been something we were unsure of for various reasons, but if they were willing to allow him to do what he could do then we weren't going to stand in the way! To say it came together quickly would be an understatement. We talked with our friend Wednesday afternoon and that same evening was informed of the details. She was as excited as we were about this new experience for Wyatt! They had placed him on a team, talked with the coach briefly about the situation and had it all set up. She then cautiously stated that the first game was "tomorrow", Thursday evening. In an effort to convince myself, I thought "We can do this." Yesterday afternoon we went shopping for all the needed baseball gear....a glove, cleats, uniform pants. Wyatt was giddy! He was slightly nervous, but eager to learn and play. I didn't expect him to jump right in and play at first, though that's exactly what happened! He didn't miss a beat.

They put him right out on the field, showing him how it's done. Hitting the ball that was pitched to him on the first time up to bat, running the bases and learning the game. We could see him fading, but I knew he wasn't about to alert his new coaches. And for this first game we weren't about to dampen his spirit. He was feeling an emotional high that you could see written in the expressions of his face. It was amazing! The girls tried to busy themselves playing with their own newly bought, color appropriate gloves and baseballs. But their interest was waning. Jilly went on to play with new found friends and Maggie finished her homework, just waiting for the game to be over. 

~ As the team was dispersing we said our goodbyes to Wyatt's own cheering section of loved ones and it was apparent the boy was feeling the effects of the fun that was had. But he smiled while stating "This was the best day EVER!", reveling in the days events even in the midst of his increased pain and discomfort. It was worth it. To add to the evening, he was also given "the game ball." A first that will be cherished. He's now eagerly looking forward to the rest of the baseball season.

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