bye, bye nursing

So after numerous discussions over the weekend, we cancelled nursing for good. We might have to revisit that dreaded idea again when we decide on daycare for Wyatt but that's still 2+ years away. Instead of being upset or frustrated, we have always been excited when a nurse would call out sick or the agency couldn’t find coverage. I don’t think my personality is made for home nursing and when I’m stressed Wyatt is stressed. It’s just a downward spiral. I have always noticed a night and day difference between the morning hours for example when we had a nurse and the afternoon or weekends when we didn’t have a nurse present. Not only does the nursing agency/FL Medicaid put restrictions on what Wyatt can do, where he can go and when but I recognized that having nursing made me treat Wyatt differently, too. I don’t want him growing up defined by nursing. I don’t want him to start to believe that he can’t do certain things or that he needs constant supervision to do anything. He will know his limitations and may have to make modifications but I want him to know that he can do anything he want to do, whenever he want to do it. He can and should be just as independent as his brothers and I cannot stand for anything less. We haven't had a nurse since Friday and our entire family including Wyatt has been so much more relaxed and acting normal around each other again. No more house arrest for Wyatt (stupid FL Medicaid rules). We took Wyatt grocery shopping and to Grandma and Grandpa’s house. We took him to the park/playground and let him swing and go down the slide for the first time. We sat him in the kiddy pool on our back porch. We have been successfully sprinting him (taking him off the ventilator to let him breathe on his own while awake) several times a day for 30min-1hour at a time. And the best, most amazing and reassuring part is, we did all that without a single breath holding cyanotic episode. Just since Friday, since we haven’t had a nurse, he has even greatly reduced the number of episodes when it’s nap time and now settles down on his own and even just. That is so huge, I can’t even find words powerful enough to explain how big of an accomplishment, how big of a difference that is. This boy just needed his freedom and get out into the world. No more explaining to nurses and the nurse case manager why/when we spint Wyatt and why we don’t have an official doctor’s order for it to cover liability for the nursing agency. No more explaining why we won’t feed Wyatt exactly 150mL every 3 hours on the dot. No more making endless phone call to update everybody and their brother on Wyatt’s latest appointment schedule, new orders and discussions with doctors. No more overanalyzing every little fussy moment or changed ventilator need as being medically related without considering normal growing discomforts. No more treating our son like he’s sick and holding him back from doing normal growing up kid things. No more of that. What Wyatt does, how and when is back to being a family business only.

I wasn't sure of the cold water at first but boy, splashing everyone sure is fun.

I better hang on to dear life, Mommy might get too excited.

Crawling is optional when you can just stand?!

Better not drop me. I'm hanging on to my vent circuit just to be safe.