kellie is realy tired and so down

[Guest guest]

Hi every ,one been down kellies tonight, she is so tired and seems so

low. caitlyn is still caughing all night during sleep and still

reching the dietion says caitlyn needs 800mils of milk a day caitlyn

is still loosing wieght cos of gagging reaching kellie has turn the

machine off and give cailtyn a rest so the feeds take so long to do.

WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING NO

DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS 16LB

AND 14 MONTH OLD we thought changing her milk might make a difference

but no. kellie cant put the rate down to less than 100mils a hour

flow rate i have been talking to her tonight kellie feels i think a

bit trapped caitlyn wired up to the machine 8 hrs a day kellie wont

take caitlyn out when she is getting fed cos like i said in the past

people hear caitlny reching and caughing and they say to kellie that

child shoud not be out they dont understand. kellie panics when

caitlyn reches when she is out she does not like to vent caitlyn

outside. Caitlyn is going into hospital on fri for a test up her nose

but i think caitlyn needs a sleep study done i think caitlyn might

have sleep apnea. caitlyn is allways on oxygen when she is in

hospital, and her sats go down this seems to help but we dont have a

sats machine at home .How do use keep a child on a feed for 2/3hors

3/4 times a day .what happens when caitlyn eventually starts moving

around what do you do then.Its difficult for kellie cos her boyfriend

is no help he just plays on the playstation all the time or goes out

and if i say anything to kellie about this she says he does help a

bit. not enough if you ask me. caitlyn just gets wraped around the

tube and pulls on the tube and knocks the machine over all the time

I try to go down and have the bairn when i can but kellie finds

feeding caitlyn so hard caitlyn needs watching all the time i dont

know how you all do this kids dont want to lie still for ages

caitlyns tube is short i know i have been told you can get longer

tubes but we cant get one for this machine we have.im sorry im having

a good moan tonight i just dont know what to say to kellie for the

best at the moment kellie just hopes they find something on fri and

sort caitlyn out.I do have caitlyn over nbight once a fortnight but

thats not enough i wish i did not have to work and could help kellie

more i know if kellie could have agood nights sleep and caitlyn was

not caughing she might not be reching. kelies trouble are so trivial

to other people on this sight so feel like i should not be moaning

but i am. This trouble with caitlyn has been goin on for 8 month now

she had a fundo opp done in dec we thought that would be the end of

it but how rong we were well thanks for listening love rita kellie

and cailtyn xx

[Guest guest]

Rita-

It's ok to whine. We've all been through those early months that feel so

bleak. I remember feeling overwhelmingly weary of keeping up with Aubrie's

needs. She was on 20 hrs/day continuous feeds at one point. It is

mindnumbing, isolating, and frustrating. You may not have answers for

Kellie. But being there to support her is a huge thing. Just knowing she's

not totally alone in this will make a difference. Continue doing what you

can. Save your whining for us so that you can be strong for Kellie.

If it helps at all, I don't think Aubrie was more than 16 lb at 14 mos. I'd

have to find my records to know for sure, but that seems familiar. It's

such a challenge to figure out how to get a kid to grow when you are pumping

in as many calories as they can manage every day and they still don't gain

weight. Hang in there. Things eventually improved for Aubrie. She outgrew

the reflux and began to thrive. She's still tiny - barely 50 lbs at 9.5 yrs

old. Most people guess that she's in kindergarten instead of 3rd grade.

It may not seem like it now, but there is hope. No one can tell you " the 8

easy steps to be ok " - but you will be ok - somehow. Just believe it and

wait to see how it will happen for your family.

Hugs

Michele W

[Guest guest]

Hugs to all!! I know those feeling, I never had an O2 montior either

and she did have sleep apnea and was on O2 so that never made sense

to me. I would demand to talk to someone about a sleep study and a

swallow study. I know she had it a bit harder with her doctors then

we do here. But I think its time to voice up.

He boyfriend also needs a talking to, I know I have my nights when

my husband is home and he drives me nuts doing some of the things he

does.

Also I think Kellie needs to see a doctor herself for depression, I

did (and yes I know its hard to get yourself to the doctor) but try.

And let her know Eva is 22 months old and she is not even 20 lbs

yet!!

Hugs to all and I will be thinking about them all,

Crystal mom to (11), (3), and Eva (22 month old CHARGEr)

wife to Dan in Illinois

>

> Hi every ,one been down kellies tonight, she is so tired and seems

so

> low. caitlyn is still caughing all night during sleep and still

> reching the dietion says caitlyn needs 800mils of milk a day

caitlyn

> is still loosing wieght cos of gagging reaching kellie has turn

the

> machine off and give cailtyn a rest so the feeds take so long to

do.

> WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING

NO

> DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS

16LB

> AND 14 MONTH OLD we thought changing her milk might make a

difference

> but no. kellie cant put the rate down to less than 100mils a hour

> flow rate i have been talking to her tonight kellie feels i think

a

> bit trapped caitlyn wired up to the machine 8 hrs a day kellie

wont

> take caitlyn out when she is getting fed cos like i said in the

past

> people hear caitlny reching and caughing and they say to kellie

that

> child shoud not be out they dont understand. kellie panics when

> caitlyn reches when she is out she does not like to vent caitlyn

> outside. Caitlyn is going into hospital on fri for a test up her

nose

> but i think caitlyn needs a sleep study done i think caitlyn might

> have sleep apnea. caitlyn is allways on oxygen when she is in

> hospital, and her sats go down this seems to help but we dont have

a

> sats machine at home .How do use keep a child on a feed for

2/3hors

> 3/4 times a day .what happens when caitlyn eventually starts

moving

> around what do you do then.Its difficult for kellie cos her

boyfriend

> is no help he just plays on the playstation all the time or goes

out

> and if i say anything to kellie about this she says he does help a

> bit. not enough if you ask me. caitlyn just gets wraped around the

> tube and pulls on the tube and knocks the machine over all the

time

> I try to go down and have the bairn when i can but kellie finds

> feeding caitlyn so hard caitlyn needs watching all the time i dont

> know how you all do this kids dont want to lie still for ages

> caitlyns tube is short i know i have been told you can get longer

> tubes but we cant get one for this machine we have.im sorry im

having

> a good moan tonight i just dont know what to say to kellie for the

> best at the moment kellie just hopes they find something on fri

and

> sort caitlyn out.I do have caitlyn over nbight once a fortnight

but

> thats not enough i wish i did not have to work and could help

kellie

> more i know if kellie could have agood nights sleep and caitlyn

was

> not caughing she might not be reching. kelies trouble are so

trivial

> to other people on this sight so feel like i should not be moaning

> but i am. This trouble with caitlyn has been goin on for 8 month

now

> she had a fundo opp done in dec we thought that would be the end

of

> it but how rong we were well thanks for listening love rita kellie

> and cailtyn xx

>

[Guest guest]

I am concerned about your daughter. One person can only do so much. Has she

talked with DDD case worker or Birth to Three social worker about respite care?

There are many services available (depending on the area)...you just have to

ASK, ASK and ASK again. Caregiver fatigue is not good for the child

either...the care can be compromised. I was starting to feel that last year and

got the " powers that be " involved and they truly came through. Huge difference

when you have some help and can get some rest and actually think ahead for your

child...therapies, upcoming clinics, what can I do better/different/etc.

We are all pulling for you!

Amy

ritaskeoch wrote:

Hi every ,one been down kellies tonight, she is so tired and seems so

low. caitlyn is still caughing all night during sleep and still

reching the dietion says caitlyn needs 800mils of milk a day caitlyn

is still loosing wieght cos of gagging reaching kellie has turn the

machine off and give cailtyn a rest so the feeds take so long to do.

WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING NO

DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS 16LB

AND 14 MONTH OLD we thought changing her milk might make a difference

but no. kellie cant put the rate down to less than 100mils a hour

flow rate i have been talking to her tonight kellie feels i think a

bit trapped caitlyn wired up to the machine 8 hrs a day kellie wont

take caitlyn out when she is getting fed cos like i said in the past

people hear caitlny reching and caughing and they say to kellie that

child shoud not be out they dont understand. kellie panics when

caitlyn reches when she is out she does not like to vent caitlyn

outside. Caitlyn is going into hospital on fri for a test up her nose

but i think caitlyn needs a sleep study done i think caitlyn might

have sleep apnea. caitlyn is allways on oxygen when she is in

hospital, and her sats go down this seems to help but we dont have a

sats machine at home .How do use keep a child on a feed for 2/3hors

3/4 times a day .what happens when caitlyn eventually starts moving

around what do you do then.Its difficult for kellie cos her boyfriend

is no help he just plays on the playstation all the time or goes out

and if i say anything to kellie about this she says he does help a

bit. not enough if you ask me. caitlyn just gets wraped around the

tube and pulls on the tube and knocks the machine over all the time

I try to go down and have the bairn when i can but kellie finds

feeding caitlyn so hard caitlyn needs watching all the time i dont

know how you all do this kids dont want to lie still for ages

caitlyns tube is short i know i have been told you can get longer

tubes but we cant get one for this machine we have.im sorry im having

a good moan tonight i just dont know what to say to kellie for the

best at the moment kellie just hopes they find something on fri and

sort caitlyn out.I do have caitlyn over nbight once a fortnight but

thats not enough i wish i did not have to work and could help kellie

more i know if kellie could have agood nights sleep and caitlyn was

not caughing she might not be reching. kelies trouble are so trivial

to other people on this sight so feel like i should not be moaning

but i am. This trouble with caitlyn has been goin on for 8 month now

she had a fundo opp done in dec we thought that would be the end of

it but how rong we were well thanks for listening love rita kellie

and cailtyn xx

Amy McKinley

Mom to MIGHTY MAX -- cHARGE, 19 months old (17 months corrected)

maxupdate.blogspot.com

---------------------------------

The fish are biting.

Get more visitors on your site using Yahoo! Search Marketing.

[Guest guest]

Do you feed her overnight ?

We feed cai like this

9 am 100ml flow rate for 1hr - total 100

1 pm 100ml flow rate for 1hr - total 100

5 pm 100ml flow rate for 1hr - total 100

9pm 100ml flow rate for 1hr - total 100

11pm 50ml flowrate for 8 hours - total 400

which adds up to 800ml

actually we have started Cai with carrots at the 1pm feed so now he gets

120ml and a fifty carrot - milk mix

Ian - Cai's dad

ritaskeoch wrote:

>

>

> Hi every ,one been down kellies tonight, she is so tired and seems so

> low. caitlyn is still caughing all night during sleep and still

> reching the dietion says caitlyn needs 800mils of milk a day caitlyn

> is still loosing wieght cos of gagging reaching kellie has turn the

> machine off and give cailtyn a rest so the feeds take so long to do.

> WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING NO

> DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS 16LB

> AND 14 MONTH OLD we thought changing her milk might make a difference

> but no. kellie cant put the rate down to less than 100mils a hour

> flow rate i have been talking to her tonight kellie feels i think a

> bit trapped caitlyn wired up to the machine 8 hrs a day kellie wont

> take caitlyn out when she is getting fed cos like i said in the past

> people hear caitlny reching and caughing and they say to kellie that

> child shoud not be out they dont understand. kellie panics when

> caitlyn reches when she is out she does not like to vent caitlyn

> outside. Caitlyn is going into hospital on fri for a test up her nose

> but i think caitlyn needs a sleep study done i think caitlyn might

> have sleep apnea. caitlyn is allways on oxygen when she is in

> hospital, and her sats go down this seems to help but we dont have a

> sats machine at home .How do use keep a child on a feed for 2/3hors

> 3/4 times a day .what happens when caitlyn eventually starts moving

> around what do you do then.Its difficult for kellie cos her boyfriend

> is no help he just plays on the playstation all the time or goes out

> and if i say anything to kellie about this she says he does help a

> bit. not enough if you ask me. caitlyn just gets wraped around the

> tube and pulls on the tube and knocks the machine over all the time

> I try to go down and have the bairn when i can but kellie finds

> feeding caitlyn so hard caitlyn needs watching all the time i dont

> know how you all do this kids dont want to lie still for ages

> caitlyns tube is short i know i have been told you can get longer

> tubes but we cant get one for this machine we have.im sorry im having

> a good moan tonight i just dont know what to say to kellie for the

> best at the moment kellie just hopes they find something on fri and

> sort caitlyn out.I do have caitlyn over nbight once a fortnight but

> thats not enough i wish i did not have to work and could help kellie

> more i know if kellie could have agood nights sleep and caitlyn was

> not caughing she might not be reching. kelies trouble are so trivial

> to other people on this sight so feel like i should not be moaning

> but i am. This trouble with caitlyn has been goin on for 8 month now

> she had a fundo opp done in dec we thought that would be the end of

> it but how rong we were well thanks for listening love rita kellie

> and cailtyn xx

>

>

[Guest guest]

Hi Rita,

Just a few ideas I had after reading your mail...and I am so sorry Kellie is

struggling. As ever, if you want to call me up (or Kellie herself) you have

our tel numbers...

Did Kellie ever speak to Social Services about being assessed for some

respite? I know we talked about it on the phone but I don't know what

happened. Even getting a few hours a month would be useful to give her the

chance for a break. I know she was reluctant to be seen as " not coping " by

SS, but it sounds like she might benefit if she could get some respite.

is much less demanding than Caitlyn in terms of the feeding

regime/reflux and we get 16 hours direct payment per month which funds about

21 hours of care from a childminder/carer who is trained to do 's

feeds.

If she decides respite would be useful and she's already initially got

turned down for any help then she needs to call them again and be much more

blatant in terms of how much she is struggling. Unfortunately it seems

common that they will only help when you tell them you are at the end of

your tether.

Do you have a SENSE representative locally you can contact to see if they

have any family support workers in the area who can help advocate for Kellie

with social services.

The Eyeless trust charity (here in UK) also help fund respite for children

who have coloboma or microphthalmia - check out their website. Does Caitlyn

have colobomas? They also have their own social workers (and I believe 2

nurses) in some regions who can help advocate for children with these eye

conditions (and often other conditions in addition to the eye condition) so

it would be worth contacting them to see if they have any advise. We got

visited by them - they were helpful.

Does Kellie get DLA benefit for Caitlyn....she should be getting the middle

or highest rate for personal care if she is attending to needs more than

once during the night....in the past we used some of our DLA towards paying

ourselves for a carer to help occassionally. Not ideal, but in desperation

needs must.

I think if I was Kellie I would start researching who locally could take

care of Caitlyn for a couple of hours a week and what they would charge. Our

carer charges £7 an hour and we have trained her to do the feeds and trust

her 100%. Kellie could stay with them until she felt confident to leave

them for a couple of hours (at which time she could go and have a nap).

Even a short break once every 2 weeks, alongside the night off you provide

for her would help her have a few hours break....you might even be able to

link with Crossroads or another voluntary organisation to find a volunteer

you could train up.

Also www.specialkidsintheuk.org would be a good place to look /ask for other

Mum's of children with Special needs in your town or county...they have an

active message board...maybe you could find some local mum's in Durham with

SN kids and they will be able to take Kellie under their wing a little...and

she can see what kind of services and support they are getting. I know she

is only 18 herself and I really wish I lived nearer so I could help more.

Does she go to any local SN playgroups with Caitlyn...or a support group. I

feel she needs to meet some other " warrier Mum's " like me who can support

her and know about the local resourses so they can fire her off in the right

direction to get the support set up she needs to have in place so she isn't

so exhausted and can then enjoy being a mum!

If you encourage her to join a local group she will meet them and they will

relish helping her out!

Please remind Kellie she doesn't have to do all this single handedly. I

know she has been making a brilliant job of everything so far!! I am much

older than her, but I couldn't raise without the extra help we get.

Steadily I have build a very small pool of people who can support Neil and I

in looking after . They say it takes a village to raise a child and in

our case we take that very literally and have no plans to go it alone!

Love and hugs

is (with hugs from Caitlyn's pal )

>

> Hi every ,one been down kellies tonight, she is so tired and seems so

> low. caitlyn is still caughing all night during sleep and still

> reching the dietion says caitlyn needs 800mils of milk a day caitlyn

> is still loosing wieght cos of gagging reaching kellie has turn the

> machine off and give cailtyn a rest so the feeds take so long to do.

> WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING NO

> DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS 16LB

> AND 14 MONTH OLD we thought changing her milk might make a difference

> but no. kellie cant put the rate down to less than 100mils a hour

> flow rate i have been talking to her tonight kellie feels i think a

> bit trapped caitlyn wired up to the machine 8 hrs a day kellie wont

> take caitlyn out when she is getting fed cos like i said in the past

> people hear caitlny reching and caughing and they say to kellie that

> child shoud not be out they dont understand. kellie panics when

> caitlyn reches when she is out she does not like to vent caitlyn

> outside. Caitlyn is going into hospital on fri for a test up her nose

> but i think caitlyn needs a sleep study done i think caitlyn might

> have sleep apnea. caitlyn is allways on oxygen when she is in

> hospital, and her sats go down this seems to help but we dont have a

> sats machine at home .How do use keep a child on a feed for 2/3hors

> 3/4 times a day .what happens when caitlyn eventually starts moving

> around what do you do then.Its difficult for kellie cos her boyfriend

> is no help he just plays on the playstation all the time or goes out

> and if i say anything to kellie about this she says he does help a

> bit. not enough if you ask me. caitlyn just gets wraped around the

> tube and pulls on the tube and knocks the machine over all the time

> I try to go down and have the bairn when i can but kellie finds

> feeding caitlyn so hard caitlyn needs watching all the time i dont

> know how you all do this kids dont want to lie still for ages

> caitlyns tube is short i know i have been told you can get longer

> tubes but we cant get one for this machine we have.im sorry im having

> a good moan tonight i just dont know what to say to kellie for the

> best at the moment kellie just hopes they find something on fri and

> sort caitlyn out.I do have caitlyn over nbight once a fortnight but

> thats not enough i wish i did not have to work and could help kellie

> more i know if kellie could have agood nights sleep and caitlyn was

> not caughing she might not be reching. kelies trouble are so trivial

> to other people on this sight so feel like i should not be moaning

> but i am. This trouble with caitlyn has been goin on for 8 month now

> she had a fundo opp done in dec we thought that would be the end of

> it but how rong we were well thanks for listening love rita kellie

> and cailtyn xx

>

>

>

[Guest guest]

> >

> > Hi every ,one been down kellies tonight, she is so tired and

seems so

> > low. caitlyn is still caughing all night during sleep and still

> > reching the dietion says caitlyn needs 800mils of milk a day

caitlyn

> > is still loosing wieght cos of gagging reaching kellie has turn

the

> > machine off and give cailtyn a rest so the feeds take so long to

do.

> > WE HAVE CHANGED CAITLYNS MILK TO A HALF DIGESTED MLIK BUT MAKING

NO

> > DIFFERENCE NO ONE SEEMS CONCERNED ABOUT CAITLYNS WIEGHT SHE IS

16LB

> > AND 14 MONTH OLD we thought changing her milk might make a

difference

> > but no. kellie cant put the rate down to less than 100mils a hour

> > flow rate i have been talking to her tonight kellie feels i think

a

> > bit trapped caitlyn wired up to the machine 8 hrs a day kellie

wont

> > take caitlyn out when she is getting fed cos like i said in the

past

> > people hear caitlny reching and caughing and they say to kellie

that

> > child shoud not be out they dont understand. kellie panics when

> > caitlyn reches when she is out she does not like to vent caitlyn

> > outside. Caitlyn is going into hospital on fri for a test up her

nose

> > but i think caitlyn needs a sleep study done i think caitlyn might

> > have sleep apnea. caitlyn is allways on oxygen when she is in

> > hospital, and her sats go down this seems to help but we dont

have a

> > sats machine at home .How do use keep a child on a feed for

2/3hors

> > 3/4 times a day .what happens when caitlyn eventually starts

moving

> > around what do you do then.Its difficult for kellie cos her

boyfriend

> > is no help he just plays on the playstation all the time or goes

out

> > and if i say anything to kellie about this she says he does help a

> > bit. not enough if you ask me. caitlyn just gets wraped around the

> > tube and pulls on the tube and knocks the machine over all the

time

> > I try to go down and have the bairn when i can but kellie finds

> > feeding caitlyn so hard caitlyn needs watching all the time i dont

> > know how you all do this kids dont want to lie still for ages

> > caitlyns tube is short i know i have been told you can get longer

> > tubes but we cant get one for this machine we have.im sorry im

having

> > a good moan tonight i just dont know what to say to kellie for the

> > best at the moment kellie just hopes they find something on fri

and

> > sort caitlyn out.I do have caitlyn over nbight once a fortnight

but

> > thats not enough i wish i did not have to work and could help

kellie

> > more i know if kellie could have agood nights sleep and caitlyn

was

> > not caughing she might not be reching. kelies trouble are so

trivial

> > to other people on this sight so feel like i should not be moaning

> > but i am. This trouble with caitlyn has been goin on for 8 month

now

> > she had a fundo opp done in dec we thought that would be the end

of

> > it but how rong we were well thanks for listening love rita kellie

> > and cailtyn xx

> >

> >

> >

>

>

>