Whew this post is a long time coming!! It's amazing how some days I feel like I do nothing but stare at and feed Shea. And other days I feel like a huge whirlwind of things! I have been trying to keep the sweet baby Shea Facebook page up to date with the day to day things. But I know there are many of you not on Facebook and/or like all the details!
I can't remember all the details....ha!
Now don't be mad...most of the stuff is just normal baby things and is pretty boring to those not related to Shea. So let's see what were some big things of July?
Well big news for me, I am going to be staying home with Shea this fall. It's a huge deal and I'm struggling with not going back to my first graders. But Shea will always come first and he just isn't healthy enough for daycare. In fact some won't even take him because of how sick he is. We looked at private (in our home) care, but we need someone experienced with heart kiddos and realistically we can't afford them even if I am working. My whole paycheck would just go to them. It just doesn't make sense. So I am staying home with Shea until he is healthy enough (and we are out of RSV, flu and cold season!) for daycare.
Another huge thing in our lives was a fundraiser put together by Lancaster County Sheriff's Office. In just a few hours, of selling hot dog plates (any donation amount) and raffle tickets, they raised over $13,000 for us and another child needing serious medical assistance. I meant to take pictures of us and of the event but totally forgot. We got there early, but by noon that place was packed. The hot dog line was intertwined with the raffle ticket line. And the to-go line was mixed in there too. It was crazy packed! We are so thankful for all the people who helped out at the event, donated money, and bought raffle tickets. It was more than we ever could have expected!!
Okay I guess I should put a little something in here about Shea right?! I mean this is his blog...LOL! Our sweet baby is chunking up!! We are so close to 12 lbs I can taste it :) He still isn't a fan of tummy time but loves to nap on his belly. Go figure! Our feeding is about the same, a little more at times and then sometimes just too dang tired to eat. (This is normal for heart babies. But as long as they keep gaining weight the doctors don't worry) Shea continues to work on those vocal cords. We haven't heard a hearty laugh but we get some giggles sporadically and even some screams.
At our last cardiologist appointment, Dr. Ohmstede stated again that he was still thinking September for our next open heart surgery (Glenn) not because Shea is doing worse, he is in the low 80's for oxygen saturation levels, but more because of RSV season. I have had friends and neighbors tell me stories about their heart healthy kiddos getting it...and a man it sounds just horrible!! The shunt that is keeping Shea alive right now is a serious bacteria sponge. So if we can have the Glenn before the season starts, he will have less of a chance of catching it. And we won't be in the hospital when it's floating around.
So what's coming up for us now? Next week we go to the iCAN clinic. This is a neurology appointment. Shea will be evaluated in several ways and we will be able to start working on his delays. Because he wasn't on the ECMO (heart/lung) machine during the first surgery, we don't think there are many. But he will have to be on the ECMO for sure in this next surgery. We are hoping to get on top of the delays before then. In a month we will go back to the cardiologist and he will determine if Shea should be scheduled for his surgery. Until then we keep watching his O2 saturation levels. Of course we watch his color too. It's not fun seeing him turn blue and purple!
I will leave you with some pictures of our amazing kiddo!
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