Eli had his appt with the pulmonologist this morning. She thinks that he is aspirating stomach acid when he is coughing. She is putting him back on his prilosec to help control the stomach acid a bit more, and a VERY small flush. Trying to keep everything out of his stomach as much as possible. So we can't seem to figure out how to keep his darn lungs protected. They are going to push some more with OT and speech, doing an evaluation here in Wichita, so he can hopefully receive more consistent local therapy.
We tried some time off the G drain this morning and by this afternoon he was super fussy. Hooked his drain up and got over 50cc of bile in 1 hr. So clearly we can't go without a drain. Luckily they got his new drains and adaptors in today.
His pulmonologist also wants the RSV vaccines. She is doing all of the paperwork thru the insurance to get that done. He would get 1 shot a month from November until April, so 6 months total. The doc told us the cost of EACH of these shots and HOLY CRAP. I had no idea they could even make a shot that expensive. But if that's what we need to help protect his lungs then I guess that's what we need. I will however be researching the vaccine tonight!
Tomorrow Eli has his appt with the pediatrician, and next week with the cardiologist. Nervous about that one.
Everyone else is doing pretty good. Ben has a new respite worker that will be starting this week. We will see how that goes. He seems like he will be a good fit for Ben, so fingers crossed. His Tuesday/Thursday night worker will continue with him on those 2 nights as they do really well together. Jace finally found his missing library book, so finally got it returned. He's super excited that he gets to keep his money and actually go shopping instead of paying off a library fine. Ari is good. She did well with swim lessons this last saturday and even tried to float on her back all by herself. Emily is good. She's reading alot and listening to music alot. She's constantly finding new groups and new songs that she likes. She did great at swim last week and was able to swim underwater part way across the pool. She was super excited.
Bob and I are ok. Exhausted. Hospital stays and eli being sick just wear us out. It's beyond exhausting. Hoping for life to get back to normal, not that we know anymore what normal is.
On the child support update...Brian has now decided that he thinks the judges signature looks alot like mine, which mine you it doesn't. So he wants proof. Clearly the judges signature, the judges stamp, the court clerks, stamp, the court issued case number, AND the emailed court papers directly from the court clerk weren't proof enough. Nor the fact that he can call the courthouse and verify the case number AND he can call Kansas Payment Center to verify the case number by using the social security number or case number. So he is 3 payments behind (hasn't paid anything) and he hasn't called the kids, acknowledged a birthday, or anything. I don't know how else to get him to understand it's about the kids not about him. I have my last children of divorce class this coming Thursday and then the papers will be finalized. Not that he will believe that either. When he gets that 1st TINY paycheck and notices the garnishment, wonder if he will finally believe it.
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