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9,266 Posts
Discussion Starter · #1 ·
ok i had a bad dream one night this weekend.


God apperatnly was reminding me of things i need to do to get ready that i had not added to my list. so lmy looong list just got longer. some days just having the lists make me feel better, other days --- WOW they make me feel like i am such a failure.

I had a dream i had to go to the hosptial NOW (week 20) .......... and we had to scramble to get care for T. In fact i waqs packing for him, toys, food, and so on while getitng yelled at that i needed to get ready to go for me....

So I realizaed while i say i know i can not count on my mom to arrive in only the 7 hours dirve time....i have not acted on that. i do have to be ready for it to be many hours before she can get here, and i do need to be ready in case labor either goes faster or something happens.

We have two couples, we can ask to take care of T....... people who work with Scott. One now, their baby is due in late July, though i would not ask them later save a true life or death emeregency. and one where they jsut got married and the wife has not yet moved here, but after she does they should be an option. I think they are a better option, and it could be a more liberally defined need to call them, even at 2 am......

so that is ok. if it is day time, he has a babysitter he goes to 3 hours every 2 weeks we could call, and really if it is am middle of the night go to the hosptial emerecny -- we could call miss rebecca then too.

i guess that...THAT is the defination of can call A LOT of people then.... you know? But thinking who would be less tramtic for Theo in an already diffcult situation.....

But i realized i need to pack HIM a bag when i pack mine (with Scott's and baby's stuff)... cuz he might have to go somehwere -- at least in teh mean time till mom gets here. i can not assume he will jsut be home the whole time.

I also relealized i need to write up -- even for mom -- some information, what food he eats, his little habits, his signs (which are pretty clear and are ALS, but if you don't know ALS....) and so on

....and when i pack up his clothing and diapers (disposables) and wipes and so on i need to pack some toys and books and some snacks i know he will eat....

WAKE UP CALL.........


· Registered
9,266 Posts
Discussion Starter · #2 ·

So DH and I talked about this last night

I am trying to get some Theo stuff done today -- but i am drawing a balnk on writting up anything abouthim -- in case anyone other than mom has to care for him.

I do nt want to sound insulting, and obvious.....and sooooooooooo much of his care is soooooooooo obvious to ME...........but i am not sure what someone else, and possible a young couple NOT parents, would need to know....

so if you were steping in to care for a 2 yo -- what would you want to know?

fav foods, foods he won't or can't have.....

what else?


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2,709 Posts
I would want to know:

What time and what he eats for B/L/D and snacks.

What time does he wake up in the AM? What time does he go down for a nap? How long does he nap? What about bedtime (routine, etc).

BASICALLY, a rough outline of a "daily routine".

What toys, games, activities he enjoys.

What shows/movies he watches (if any) and limits on these.

Any allergies or strong dislikes...

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1,350 Posts
Personally, I would not find too much information insulting, and it shouldn't be too overwhelming if you organize it well. If it were me I'd want to know as much as possible so that I could do a great job taking care of T. I would definitely list routines, foods, fav play activities, etc. I would also list places that are great to take him if he gets bored/restless/uncomfortable at their/your house (since this will be November, this would probably be indoor stuff, like story hour at the library, the fun train table in the kids section at barnes and Noble, etc. You could even leave them a few bucks to take T to a local children's museum or indoor play place). You'll want to keep him busy so he doesn't remember to miss you too much!

Also, as a mom of a former signer, I would suggest photocopying pictures of the ASL signs that T uses (the book Baby Signs by Acredolo and Goodwyn has a fabulous picture glossary in it, and that book is available at most libraries in the parent/child section). I did this for my whole extended family when DD was signing, so that they could all understand her (major speech delay), and they loved it and really used it. The picture glossary is much easier for newbies to use and understand than written descriptions.

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9,266 Posts
Discussion Starter · #5 ·
this is what i have so far -- what do you think?

Theodore Packard Information
current June 19, 2007

DOB: 11-13-2005
Blood Type = 0+

Mother: Aimee
Father: Scott

Out of State Emergency Contact -
Pat and Ted Wells (maternal Grandparents)
Home: 417-881-1079
Cell 417-224-0987

As of June 19 - 21 pounds 1.5 oz


He likes mostly finger food, and will not let you feed him hardly at all. He likes to play with a soon but can't really use it

He is not much for sitting to a meal, he will sit for a short time, but is still hunger when he is bored with sitting. Most of his eating is done grazing. We do sit down 2 or 3 times a day to a meal, they just don't last long and he still wants his food when he gets up.

He eats a lot of the time, offer frequently as he will not ask he will just get fussy.

He likes
•Fruit chewies
•Yogurt covered raisin
•Gummy bears (2 or 3) or jelly bens (2 or 3) as treat

He does not like
•Mushy or soft or sticky or slimy stuff -
•Such as: caned peaches, canned pares, rice

He can not have
•Any nuts or anything cooked in nut oil
•Hard candy

•Lots of milk in a sippy - you have to remind him, and help him, tip it up high enough
•Water - in water bottle with sports top. Barely open it and again help him hold it up, make sure it is closed or he will get water all over


He is not much for pretend play, but it is starting.

He really like
•Train things
•Water (tubbie time, pool) or any water he can get into
•Pounding things

Be careful about
•Things in his mouth he could fall on and cause a soft palate injury (sticks, spoons,)
•Pens - he will steal them
•Water - he will find it (dog bowl, toilet) and make a mess

Clothing / diapers

•He has to have a onies on to keep him from pulling off diapers

Signs and Words

•Theo uses a limited about on ALS
•He can sign please - rubbing chest with flat palm)
•He tries to sign water and food - both fingers to the lips, or hand over mouth
•He signs milk for nurse - one hand open and close as if milking a cow
•His only spoken words are mom-mom and da
•He will wave bye if HE wants to go somewhere

A general day (I know this is not a normal situation and do not expect you to try to follow this - just a guide to tell you what he may be feeling or ready for at different times)

•Wake up around 8,
•Eat breakfast
•Try for a meal at 10:45
•Nap around noon (start process around 11:30 or 11:40)
•Wake up around 1
•Eat a "meal"
•3 or so to 4:30 or so is often quiet time, he won't sleep but he will sit in my lap and rock and watch TV
•Dinner around 6
•Bed around 8 to 9. … start process at 8.

Things to be careful of
•He climbs - he is good at it, and doesn't not grasp gravity or laws of physica and has no fear
•He is stubborn (gets it from his dad  ) and will go back time and time again to things
•He is good at opening drawers and cabinets - even ones you do not think he can reach
•He puts most things in his mouth. Including rocks (loves rocks).
•Also watch for him putting things in him mouth and running, climbing, that sould result in a soft palate injury

Trouble shooting

What might be wrong

•Fussy = diaper change needed
•Fussy = hunger
•Fussy = tired or over stim and need to be quiet and sit with someone - watch TV or something.
•Hyper = hunger
•Hyper = tied, he will fight it but try to rock or walk quietly and see if he settles down. If he gets MAD when he try - it is a sure bet he is actually tired and fighting it.

Distractions to try

•Go outside, and walk
•Find a way to play with water
•Give a cell phone, tell him he has to sit with you and not to put it in him mouth
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