Anonymous asked...
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.
14 comments:
That schedule makes me feel not organized, at all. There you go, again! I'm impressed. Especially being reminded that you have triplets! And that they were infants, once upon a time, while you were also juggling tube feedings and meds.
So remind me again? Do you work at home or outside, as well?
umm...this sort of looks like a different language. and how do you give that medicine? ive seen the feeds but never the meds.
you are sort of wonder woman. dovi is very lucky to have a mother who is as instant gratification/efficent aware as you. i bet you do those things on time every day and never miss one.
I totally agree with Shosh's comments above, but you forgot to mention that taking care of Dovi also involves watching an INTENSE amount of baseball :)
Wow! It's funny that caring for 1 year old triplets can be considered easy but I guess its all about perspective.
i remember the first time you stayed with us and aaron and i had to put dovi to sleep. the list you left had lots of instructions and i was so nervous!! every time you leave here, one of us comments on how much there is do for Dovi and how easy you always make it seem. - tamar
So, this reminds me of an incident that occurred when Dovi was one year old. I was watching him while you and Benjie were both working. We were playing, having a great time, and all of a sudden I looked down and his G-tube button was not there!!! It was gone!! Just a hole in that adorable tummy! After one moment of sheer terror I called you and you calmly and patiently walked me through putting in a new one. You were calm the whole time and I succeeded in getting the new one in. This little story is just a clear indicator of the approach you and Benjie have taken with Dovi all the way through -- calm, cool, collected, and always on top of things. Love ya! Mommy
I got a mini fuzzy picture!!!
Oh oh when do I guest blog?
Remember, 0.75 mg of Robinol does not equal 18.75 ml of Robinol :-)
wow! sounds really busy! you seem to manage it all like a pro. i am in awe!
You are amazing! Not just because of the amazing things you DO, but because of your amazing attitude!
Hey, did I tell you about the re-usable diaper I found for E? We use it as the outer diaper over a disposable. If it is wet, we toss it in the laundry; if not, no wasted "over" diaper. ( It's perfectly dry in the am about 50% of the time)And, it's cute: hot pink. Soft and comfy, no crinkly noisy vinyl. She seems a lot more comfortable! Even thought it was - not kidding - $50, it was worth it. I found some kits and patterns for another one...we'll see how that goes. Let me know if you want the vendor info.
Love,
P
Sara- while I too have done a good part of this schedule with D and I do actually understand what all of this is- I have to agree with what everyone is sayong- Dovi is very blessed to have parents like you guys! Secod of all Savta- I had a similar G-Tube insident with Dovi- I panicd for a moment- then grabbed a towel and wrapped it around his cute little beer belly (we were at therapy together and I didn't have a fix it kit with me =) and we drove home that way- Sara was sooo calm about it. Miriam
We talked about you at dinner last night, about how it's amazing what you can learn to accept as your normal. I think people say it about us, as well. D. is not medically fragile, but he is SO different, and parenting him takes a whole different set of skills, but we are so used to it that we don't think about it. The meds seem very difficult to me, but I'm sure that with time, it's second nature. I remain in awe of you, as always.
I remember when Dovi was younger and I messed up his meds. Abba and I couldn't figure out why Dovi couldn't stay awake. Thank G-d for your Porush for Dummies. I refer to it every time I have to give Dovi meds! And putting Dovi to bed is no problem, Dovi tells you what to do! As someone who has followed your schedule I know first hand exactly what your daily routine involves. Dovi and ESJ are blessed to have you as their parents, and I am blessed to have you as my children.
Mom
Is that a RED SOX cap I see on Dovi? For shame :)!
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