I feel like I just got posted in one of those Facebook status updates where I have to sort though the crap of my day to find the three good things about it. It's not quite that bad, it's just one of those days of odd pairings, the juxtaposing of my life to make it feel surreal.
We'll start before the sunrise, because I was overly optimistic that my son would wait and rise with the sun...turns out he was ready much earlier than that. Trade one bleary eyed morning for the little snuggler that I put back to sleep this morning. Bradley is usually a roamer, all over his bed, except this morning when he crawled into my arms to fall back to sleep. Nice!
And we had a pretty good morning, roaming around the living room, playing with toys, watched a little Sofia and some Little Einstein's but was more interested in playing today and didn't notice when mom happily hit the off button. Hurray! For the Win! We were thrilled when Dad got home from class, and he managed to convince a stubborn Bradley that a nap was in his best interest, and mine. With the little boy down, I got a shower and then a small nap while Dad motored off to bring back lunch.
When Bradley did wake up, he wanted to eat and devoured graham crackers, pudding and some cheese. All the crunchy things that helps him chew more and more and better and better, plus a return to cheese, a fave! Here's the negative; he's grinding his teeth now, all the time! Makes me want to grind my teeth...well, you get the idea. And yet, he ate great today! Despite the grinding, he ate a fruit roll-up, the Cheese Puffs, peaches, veggie straws and pudding. The old stand-bys with some new ones. And that makes a triumphant day. He wanted and asked to eat, and I was more than willing to oblige when he did. Lots and lots of crunchies, things he has to munch down on, the things that help him say words later. Here's one of our theories: we think that if he chews something first, real food, the crunchy stuff, then he can take his milk or water and do better with it. We think the problems come when he drinks more of his Pediasure or his water, then he can't get enough through to his stomach without causing a traffic jam at his Esophageal sphincter. Yes I know, a veritable list of scientific phrases, but I think at least one of them was a technical term of something happening with him; most likely 'traffic jam'.
So my Royals had a lead and blew it. My son had a great day eating and then tonight he had an episode of retching, and we think a tummy ache. Coincidence, I think not. Made my tummy hurt watching them lose too! But seriously, we come back to the same thing every time. We don't know for sure why he does what he does, and we don't know how to stop or prevent the episodes. All we have is theory and conjecture with a Hypothesis that may or may not pan out to be something real we can use in order to better take care of him. Trying to get a doctor on your side, well...that's the tough part. It's not that they don't believe us or listen to us, the ones that know us are on board and willing to consider the options. It's the new docs that are the ones that want to push back at us. After our vehement refusal to consider the night time feeds again for Bradley, his Peds GI stopped pushing us on it. She told us that as long as we see weight gain over the next three months then we don't have to try night time or all day feeds. Quite the relief. Let's face it, Normal may only be a Cycle on a Washing Machine, but try washing without it...life can get a little more difficult. Having Bradley run around with a backpack to hold his feeding machine in order to feed him thoughout the day would be a new normal, but not the one we want for him. That's not the one we're fighting for, we see a potential for him and we want to make sure we help him reach it. We canceled an appointment with the Peds GI at Rady's Children's for two reasons: 1. She never called us with test results when she said she would, and 2. Sent recommendations that we reduce oral feeds based on a test that he endured under duress. Less than impressed, we decided to stick to the doctors we know and who know Bradley the best.
So it was one of those good and bad days. Once Bradley cleared out the tummy trouble and that episode, he was willing to go to sleep. For how long is always the mystery. I know that he is wearing me down right now because Eric has been hearing him before me a little more at night lately, and that's unusual, that man can sleep through anything! :-) Still, it is always, always nice being part of a team. So for now, he's taking First Watch while he shoots stuff on his game and unwinds, while I take one for the team and snooze until Bradley lets me know he needs me. Whatever works right?
Day 25 of the Challenge is put to bed, and I with it. Only six more days to spread the word for this year's October. I think the NFL should help spread Awareness and wear Blue and yellow for one game next October. Who's with me?
Night all. Be well!
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