At what age?

[Guest guest]

I hope some of you here can give me some advice. My son, , is

11-years-old &

has been active in cub scouting for the past 4 years. During this time,

has been

able to do everything all the rest of the scouts did, including camping (parents

go with

scouts), because cub scouts is very family oriented. He just crossed over from

cub scouts

to boy scouts, where the focus shifts from the family's responsibility to the

boy's

responsibility. Parents do not typically go camping with the scout, but

's new

troop is aware of his medical needs & will allow one of us to camp with him.

The problem

is these campouts are more frequent (one a month), the trips are further away

(some out

of state), and tend to be longer than ones we did in cub scouts. Both my

husband & I

work, and we have 2 other kids, ages 4, and 1. We cannot go on trips every

month, and if

doesn't go, he will fall way behind in attaining his scout ranks (if he

is able to

attain them at all). These are the reasons needs one of us to go with

him:

1) He is on continuous feedings 8 hours during the day & 8.5 hours at night (a

total of

16.5 hours/day). He uses a Zevex Enteralite feeding pump. is able to

connect/

disconnect himself & start/stop his feeding pump, but he has never actually set

the

feeding bag up. I am almost positive he would not be able to pour 3 cans in the

bag

without spilling it all over the place, and I think he would also have trouble

getting the air

out of the bag. I think he could learn how to load the bag into the feeding

pump though.

Does anyone else have children on continuous feedings who can totally take care

of their

own needs in regard to this? If so, at what age were your children able to do

this? Another

dilemma I have is the need for the pump to be plugged in to charge. Most, if

not all of the

campsites they go to, are primitive with no electricity. When we wet camping

with cub

scouts, he was only on continuous feeds at night, and the trips were not as

long, so the

pump lasted long enough before we needed to plug it back in.

2) He wears a back brace for kyphosis & scoliosis and needs help putting this on

tight

enough. can get in & out of his brace easy enough, but he cannot fasten

&

tighten the straps, as they are behind his back. I could teach this to his

scoutmaster easy

enough, but because his underwear goes on over the brace, he needs to do this

with his

pants down. I don't think either he or the scoutmaster would be too comfortable

with this.

3) He takes several medications, including growth hormone (which needs to be

refrigerated) & Lupron. I am confident that could take his medication

(pills) on

his own, but he has never given himself a GH injection. We use the Cool Click,

and I have

asked him several times recently if he wants to do it, and he does not. I think

he is scared

he will do it wrong, and frankly, so am I. If you don't hold the Cool Click at

just the right

angle when you push it, the medication leaks & does not go in. As far as the

refrigeration

goes, I guess it is possible to keep the GH in a cooler with ice for the

duration of the trip.

For those of you who have children with similar needs & are self-sufficient, I

would love to

get some advice from you! Am I just being a neurotic mom, or do I have cause

for

concern? I really want to start letting go (hard to do because I am somewhat of

a control

freak) and give him more responsibility in taking care of his needs. I'd also

like to see him

stay in scouting & keep up with the othe boys. Suggestions?????

Kim C.