Parent’s tip #1: Where to start?
A pen and paper. This is all you need for your first hospital appointment. At the time, you might not able to take in all the information you’re given. Looking over your written notes later is very helpful and might raise important questions you want to ask.
Get organised. There will be lots of reading material, documentation, scripts given to you. Store everything in folders and maybe keep them together in a plastic tub.
Parent’s tip #2: Keeping track of meds
Store medications and syringes out of reach of children, with a basic list of medication dosages and times etc.
Parent’s tip #3: Your baby’s diet
The hospital will give you details of your child’s ongoing dietary needs, from introducing solids to dealing with ‘fussy’ eaters. During your clinic appointments, discuss any concerns you have about your child’s diet with your dietitian.
Parent’s tip #4: When to do physio
At first, your baby will be given a type of physio known as ‘percussions’. This can take you up to 30 minutes, so pick a time that suits you both best – while you watch cartoons or music on TV, or in your baby’s bedroom before going to sleep.
When your child is older, you’ll use more active play.
Parent’s tip #5: You are not alone!
Although each person’s experience with CF is different, there are some common reactions to hearing the news that your baby has CF. You might encounter waves of emotions and, if you do, it’s really important to seek help.
Your hospital CF team or state based CF organisation about peer support. It really helps in the early days to establish a relationship with someone who has, or is going through the same situation. It really helps in the early days to establish a relationship with someone you can discuss your feelings with.
Click on the Getting support section for a list of organisations and contacts you might find useful.
Parent’s tip #6: Feeling overwhelmed?
Your local state based organisation can help in many ways, including putting you in touch with other parents of children with CF.
Your local mother/baby health nurse can be a great listener and a good source of information about local services.
Carers Australia offers services such as counselling and baby-sitting. Contact the local branch to find out if you’re eligible.
The hospital social worker can assist in many ways, from helping with all the dreaded paperwork to applying for a Health Care Card, Carers Allowance and so on.
Parents’ or mothers’ groups This can be a great outlet where you can socialise and discuss and share issues common to all new parents, such as feeding/sleeping/routines.
Parent’s tip #7: About medicines
If your child was diagnosed at birth, they might be prescribed antibiotics as well as enzymes.
Antibiotics require sterile water, or cooled boiled water you can make up at home.
Ask your chemist to keep your child’s prescriptions, then just order by phone. Saves storing them at home
Parent’s tip #8: Coping with a day of tests
Get a good night’s sleep.
You’ll be trying to ‘fast’ your child and wait around for appointments – it can be mentally and physically exhausting.
Have a big breakfast and take small snacks in your bag.
Keep your energy levels up. Ask your partner or a friend to be there to entertain your child while you eat and drink – difficult to do in front of your fasting child! For some procedures your child may need an anaesthetic.
Each child’s recovery from an anaesthetic is different. The hospital staff will let you know what to watch out for after the each procedure.
Parent’s tip #9: Make the most of check-ups
Several times a year, the hospital will invite you to bring your baby in for a check-up with members of your CF team, from dietitians to doctors. This is a perfect opportunity to ask questions, find out how your child’s health is tracking and discuss changing medication dosages if necessary.
Parent’s tip #10: Hints about enzymes
- Apple puree is helpful when trying to give infants enzymes. Apple puree for infants can be purchased at your local supermarket.
- Or cook a batch of apple puree and store it in an ice-cube container in the freezer so there’s always some on hand.
- Although you’ll have accidents preparing the enzymes, you will master it with practice. If you drop the spoon (and you WILL!), just remember to laugh out loud and start again.
- Be prepared. It might be a good idea to start a travel bag and stock it with a box of enzymes, rubber spoons and apple puree.
Parent’s tip #11: You, your friends and family
Let them cook a meal or help with housework Like any family with a newborn child, those domestic duties always seem to get behind. With everything else you’ve got on your plate, this is going to be especially welcome.
Don’t be afraid to share your feelings A friend who listens helps you know you’re not alone.
Teach them about hygiene It’s really important your child with CF is free of any germs and/or nasty bugs. Family and friends should wash or sanitise their hands and should not visit if they have so much as a sniffle.
Encourage their questions The more they understand about CF and what you and your family are going through, the more helpful they can be.
Stay in touch – not just in the short term. Not only is it good for you to enjoy their friendship, but also CF isn’t ever going to go away, and so you’ll often need support.
Parent’s tip #12: Read me!
As carers/parents of a child with CF, you tend to be forgotten. But it’s just as important to look after your wellbeing as that of the child you’re caring for.
Try to make time to read one or all of these for a better understanding of how raising a child with CF can affect you.
Welcome to Holland
Emily Perl Kingsley describes her feelings after learning her baby had CF in an article published on a website about raising special kids with special needs.
Visit http://www.our-kids.org/Archives/Holland.html
The curse of the invisible illness
A young mum named Elli tells her family’s story of life with a child with CF on her blog. Visit http://the-happy-mama.com/life/2016/4/17/the-curse-of-the-invisible-illness
The Unspoken Concern; Post Traumatic Stress Disorder in CF
Heather Walter wrote this after reading an article that gave her insight into her experience as an ‘invisible patient’.
www.happyheartfamilies.com/articles/article/7616531/161253.htm
The Upside of Down
This memoir by blogger and CF mum Susan Biggar is available in print and as an e-book. Visit http://www.susanbiggar.com/the-upside-of-down/
