Tiny man is slowly getting better. He's doing pretty good keeping his O2 up, but it's been a bit more of a balancing act at times to keep his HR down. We've had to put him back on his O2 or bump it up a bit, to get his HR to settle back into a slightly lower rhythm. Looking forward to the cardiologist in a few weeks to retest on where his Pulmonary Hypertension levels are and how the right side of his heart is looking. He's still waking up about 5 times a night with coughing fits, although last night was the 1st night that his O2 sat didn't drop any. He's exhausted and already snoozing on the living room floor while his feed runs in.
Ari and Ben are a disaster right now. They spent yesterday getting into everything under the sun in the basement and absolutely destroying multiple things. Ben is stealing things from his teachers desk at school, and we are trying to figure out how to correct this behavior. We have to watch him like a hawk, or he will steal all of Eli's medical supplies as well. They have spent most of their afternoons outside with the older 2 and the neighbor kids, and definitely enjoy that. Ben's new therapy swing came in and we got it set up earlier this week. He absolutely loves it. He's been on his meds for a few weeks, and so far no change. We will all be meeting back up soon to discuss what next.
Jace is busy with school. He's got homework a few times a week, and spelling words tha the has to work on. Like Ben he's been on his meds for a fews weeks as well. Sometimes we think we notice some change, and then sometimes not at all. He's super excited right now because there is finally an almond milk "ice cream" available and he got some for the 1st time. For Jace this is super big news!
Emily is doing pretty good. She loves school, and is doing well there. The work is very easy for her. They've bumped up her work to more challenging work, but it doesn't seem to be enough of a challenge. She's been reading alot, and enjoying that her teacher is allowing her to pick harder books. The attitude has been immense. There is a larger gap right now between her and her siblings, and that's made some things really rough. Emily enjoys spending time talking and playing with Eli. He absolutely loves her, and she is the only one who gets his big laughs. He would have Emily hang out with him all day if she could. They definitely have a special bond, and they both love it!
The kids are off school the end of this week for parent/teacher conferences. Hoping to get some major thinning down and cleaning of their rooms while they are off. The weather looks like it should be pretty good as well, so hopefully they can spend a big chunk of time outside.
Bob and I are really pushing to get caught back up on our schoolwork. Yesterday we got 1 of our classes done, 2 weeks worth of work in 1 day! Today hoping to get the 2nd class caught up, and hoping for the 3rd by the end of the week. Bob will go back to work in the next day or two.
Other than that we are ok. It's alot of auto-pilot right now. We are exhausted, and this time it's taking us alot longer to get resituated and organized back into life. Eli is not recovering as fast as normal, and that makes a big difference as well.
More updates soon!
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