what is involved in your day to day care for dovi?
You really want to know?
Maybe I should have Raphi do a guest post on this.
Ooh! Raphi, you're going to do a "what is involved in your day to day care for dovi? AT CAMP SIMCHA SPECIAL version...ooh! fun!
OK. Our day to day with Dovi, while busy, is nowhere near as busy as many other special needs families. I think the easiest way to do this is to cut and paste Dovi's daily schedule that we send with him.
So here you are.
6am Medication 4 mg valium and .075 mg catapres
8am Nebulizer 1 albuterol and 1 budesonide
8am Feeding 1 ¾ cans Peptamen with sprinkle Benefiber via pump
8am Eye Drops 2 drops per eye
8am Medication .75 mg robinol, .1mg florinef
10am Pedialyte 8 oz
10am Eye Drops 2 drops per eye
12pm Lunch 1 ¾ cans Peptamen with sprinkle Benefiber in addition to any food that he eats.
12pm Medication 1.25 mg midrodrine
2pm Pedialyte 8 oz
2pm Eye Drops 2 drops per eye
5pm Dinner Regular Table Food-whatever he wants.
5pm Pedialyte 8 oz
5pm Eye Drops 2 drops per eye
7pm Nebulizer 1 albuterol and 1 budesonide
7pm Medication .75 mg robinol, .075 mg catapres
7pm Eye Ointment small amount in inside corner of each eye
7pm Diapers 2 diapers at bedtime
7pm Oxygen 1 L hooked in to BiPap
7pm BiPap Settings pre-programmed into machine. Refill water reservoir weekly
7pm Pulse Ox Set to alarm at 88
10pm Feeding 2 cans Peptamen Jr via gravity bag
10pm Diapers check him-change diapers/sheets/pjs if necessary
Dovi has much of his medical care centered around meals. I try to not be too hung up on the exact times-you and I don't eat at the same time every day, so why should Dovi?
So that's kind of that. I guess it kind of is a lot? I don't know-I'm so used to it and have been doing it for so long that it's rather simple-I can do a feeding in a pitch black room if need be.
I guess the abnormal becomes normal after a period of time. I remember when Dovi went to Camp Simcha Special the first time. Remember, the triplets were 1 year old that summer-so in all truthfulness we should have been a little...ahem....busy? But holy cow! did I have free time that summer.
I could not get over (I know, this sounds bizarre) how little effort it took to care for three healthy little ones. When I didn't have to give meds, nebulize, dress a kid who is technically old enough to dress himself, and make a feed, all before 8 am, it amazed me how much time I had on my hands.
I'm not saying this to make you all feel like I'm minimizing what it takes to care for "healthy", non medically involved kids.
It's more that I didn't realize how much it takes to care for Dovi, and how that much can become normal.