Wednesday, 23 November 2011

Normal Family Life + Type 1

Type 1 changes your whole world !

I have come to realise that having children & "family life" is never what you imagine !!

List of expectations:

Sleepless nights, sick, dirty nappies all the "glamorous stuff", when they were babies

Toddler tantrums, oh yes including lying on the floor kicking and screaming.(that was me)

Hair pulling, kicking, nipping & biting to name a few of the things our little lovelies can subject us and other children to.

Refusing to eat their food or go to bed.

When they start school, you cry, they are excited and desperately want to fit in.

They are getting older, starting to push boundaries, always at parties and after school activities.

Oh then it's high school, hormones, attitude, clothes, TV & friends.What happened to our lovely children?

Oh yes they have become teenagers!! (take cover)

Bringing up children is a full time dedicated role, which can be funny, frustrating and just plain ahhhhhhhhhh!!

At this point all parents will understand and will be able to identify with the above.

Then add Type 1 to any of those stages and life becomes very challenging!!

You are told that you have to give insulin by injection or via a pump every single day to keep them alive until a cure is found !!  Basically they are on permanent life support.

Sleepless nights are endless, as we need to check our children's levels. So from diagnosis most parents will never have a full nights sleep until their child leaves home.
We are lucky Claudia has a CGM. However for the last 10 days it has alarmed every night. It has also been accurate.

Hypo Night
Imagine making your child drink glucose or eat glucose in the middle of the night.Then you are finger pricking them several times to ensure their levels are coming back up. At this point you are thinking, do they need extra snacks to keep them going or will that send their levels to high. making these choices during the night is hard!! No 2 nights are the same.

Hyper Night
When your child's levels are higher, during the night. You have to make a choice. Do I correct? Do I give them another injection. Do I re-test in another hour. Having a pump should in theory make it more simplistic. for the last few nights Claudia went to bed at 5. At 4.00am she shot up to 18, then without a correction dropped back to 7.  Thank goodness I decided to watch her for a while & not correct!

Low & high blood sugars add to behavioural changes. This is a daily battle. Claudia can laugh, shout, cry & rant if her levels are low or high. This is not a "phase" this is very day life for a person with Type 1 and their family. On top of what you would expect from a child of that age.

Like most of my friends I can drop 2 of my girls off at school without a care in the world. With Claudia we go through the daily check:
Glucose tablets
Glucose drink
Meter, spare meter, test strips & batteries
Ketone sticks
Spare cannula
Book for school
Lunch all carb counted

Do I stop the pump?
Do I reduce the basal?
Do I give free carbs ?
What can she eat ? (coeliac) Do I need to bring our own food
Depending on what the party is and where will depend on what we do.

Don't even know where to start on that one!! Every time is different.

Meal Times
We weigh and count how many carbs in each meal.
The panic if they refuse to eat !!!
Purdey(aged2) got out the breakfast cereal, a bowl & weighing scales, the other morning. She put the bowl on the scales and poured the cereal in the bowl! It made me laugh, but inside my heart was heavy.

I am very proud of Claudia and all my girls as they are so loving and caring.

It does break my heart and make me cry when they say the following:

Why me I have done nothing wrong.
Mummy I feel awful, please make me feel better quickly (hypo)
Purdey (aged 2) mummy here is Claudia's cannula.
Darcy (aged 6) Claudia do you need some glucose tablets.
Felicity (aged 5) Claudia shall I help you do your finger prick.
Isabella (aged 12)  It's not fair everything is all about Claudia, she spoils everything.
Mummy I don't want my cannula changed.
I am too tired, leave me alone, I don't want those glucose tablets again!

Not forgetting the endless hospital visits. Husband & wife arguements due to lack of sleep and sense of humour loss!!

The above is just a small sample of life with a child who has Type 1 Diabetes.

Yes they look  "normal & healthy".To keep them healthy is a 24/7 full time job year in year out.

No comments:

Post a Comment