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October 1, 2018
Went to the pediatrician again today. No changes, they just like to weigh him a couple times a week so with the nurse visits and weekly dr appts it works. I bought a legit scale and she said I could actually just use that and call her with the weights since we matched it as the same as the nurses.
Maxley slept a good chunk of the day which is adorable since he didn’t sleep at all last night. I shouldn’t really say that. He slept from 10:30 or so to 3:30 (always 3:30) and then he was up every 15-30 minutes until I gave up and got him up at 7.
It’s increasingly more obvious how impossible it will be to do this alone. Eventually there will come a day where I am solely responsible of this child. With meds and equipment, appointment and everything, it’s impossible to keep up with 2 of us. Some of his tubes and vents and things get changed daily, some weekly, some you was and reuse, some you throw away. He has about 40 different items in his equipment bins and keeping it all straight is a full time job. We have to call and get more supplies when we run low and sometimes they send you the wrong stuff and you go to use it and it doesn’t fit with the g-tube or whatever. It’s frustrating and it’s hard especially with no sleep and no husband.
My mom is staying with him tonight in my room so hopefully I can catch up a bit!
Maxley slept a good chunk of the day which is adorable since he didn’t sleep at all last night. I shouldn’t really say that. He slept from 10:30 or so to 3:30 (always 3:30) and then he was up every 15-30 minutes until I gave up and got him up at 7.
It’s increasingly more obvious how impossible it will be to do this alone. Eventually there will come a day where I am solely responsible of this child. With meds and equipment, appointment and everything, it’s impossible to keep up with 2 of us. Some of his tubes and vents and things get changed daily, some weekly, some you was and reuse, some you throw away. He has about 40 different items in his equipment bins and keeping it all straight is a full time job. We have to call and get more supplies when we run low and sometimes they send you the wrong stuff and you go to use it and it doesn’t fit with the g-tube or whatever. It’s frustrating and it’s hard especially with no sleep and no husband.
My mom is staying with him tonight in my room so hopefully I can catch up a bit!