What do you wish you had known, when your child was first diagnosed?

Kate - posted on 04/18/2016 ( 3 moms have responded )

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Hi, my 9 week old son has been diagnosed with CF. I am trying to gather as much information/knowledge as I can, to keep him as healthy as possible, for as long as possible. I would love anyone to share any bits of advice, experiences, ideas that you wish you were told when your child was first diagnosed.
Thanks in advance!!

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Linda - posted on 04/21/2016

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Hi Kate,
My name is Linda and my daughter is 14yrs. One of the very best habits is asking those who come to your house for a visit or you visit, Are you feeling sick cough cold etc. Then ask have they recently been around anyone who sick/ contagious?
From what I see they get sick and get better and my daughter catches it and ends up in hospital for two week treatment.
I hope to be helpful.

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Recoveryprincess2day - posted on 06/13/2016

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Don't ask other parents about things like feeding tubes, ports, or even medications. If there is one thing I have learned the hard way is that you start to think about these things WAY before they are needed. Meaning when I heard another mother tell me how much a feeding tube helped her child gain weight and get better... I couldn't help but think ohhhhhh I know what will help us get her weight up and without even realizing it YOU bring it up to the Drs and start the ball rolling. I didn't have bad intentions, I just wanted a solution. I didn't mean to push for something I was just desperate to end the fighting! When she came out of surgery w that feeding tube nothing could of prepared me the REALITY I was then aware of. Nobody told me how sad my daughter would feel about not being able to wear a bikini... I think without even realizing what i was doing I cheated my baby out of years she could of had w.o a feeding tube! I would go back to fighting non stop with her to eat!!!! I wouldn't of pushed for a port so young bc I wasn't prepared for how hard it would be for them to place one when we got older and sicker... I wouldn't of asked about medications that would of brought her tolerance higher before she was REALLY needing these drugs!!! The worst thing I ever did was ask other cf parents for advice! Each case is different... Just sit down buckle up and let the Drs take the lead don't try to control anything give it up now because in the darkest of times is when I learned how powerless I really was and I wasted so many years trying to control things that were never mine to control! Love your baby and do EVERYTHING they say 100% bc it will work out better than you could ever imagine... Take it easy BABYGIRL save your energy it's a marathon not a sprint! Good luck and give that baby a kiss for me ❤️😘

Marcella - posted on 04/29/2016

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Hi Kate,

My name is Marcella. My daughter is 11 months old and was diagnosed very early in her life. Find good diaper cream while he is getting used to the Enzymes. My daughter got a bad diaper rash and I called our doc for help. Luckily, the cream cleared it up quickly. I love Triple Cream or Aquaphor. I also put her salt in her applesauce. I use small sauce "to go" containers (found at Target). We put enough applesauce in those for the day and just add a small packet of salt to that. She didn't like it in her milk but this seems to work. Also, remember that it gets easier. It's very scary but it gets a little easier. Don't over read. That will only overwhelm you. Ask your specialist what sights are good for updated info. I read everything in the begining and sometimes it would just bring me to tears. I now read up on advances in research and helpful blogs that give good pointers. Hang on to the fact that there is so much progress going on in CF research to help find a cure. You will do great! Allow yourself to enjoy being his mama. You will get used to the routine. Enjoy the snuggles and smiles and the love.

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