We still Hope
As a mom with a daughter I can empathize. My daughter is now seven and has had only 1 crisis in her life. I pray that you have a strong support system. Make sure your daughter gets lots of fluids, eats healthy foods with lots of folic acid, and consider a vegetarian diet once she starts eating. I also recommend that you read Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait. Read and learn all you can! Sickle cell is not a death sentence, find your daughter a compassionate hematologist and pediatrician that you can trust.
God bless you and your baby ..YOU WILL BOTH BE FINE. God is on the throne. Sickle Cell disease is NOT a death sentence. It is a mere setback, for a comeback! GOD is watching us to see how we cope with the ills of the world, so be steadfast and true to your faith. My 7 yr old was diagnosed in my womb.. amniocentesis. I never heard of this disease until I found out he had it. I was devastated, blamed God, and went through it.. But guess what, my son is healthy and just fine. Every so often he gets a cold and it develops into pneumonia.. or a flu and he is hospitalized with antibiotics for 2 days.. but generally NO pain crisis. Plenty of water all day.. eat fruits and veggies as much as possible.. Vitamins!! and just hugs and kisses.. Your child needs you to be the heavy..so take the news to be vigilant and courageous.. Hydroxyurea is the new drug for children and my son has been on it almost a year. His sick visits have been cut in half. Never forget there is always HOPE!! If you need to talk you can hit me email@example.com
I know how you are feeling as I am the mother of a 6 year old girl who has SS. A few things i would like to tell you, Firstly you and your baby will be fine, i know it's shocking when you first get the diagnosis but with time you will feel more OK with it. Secondly, education about the condition is key - you need to understand what SS is, what triggers a crisis etc. you know what they say "knowledge is power". for my daughter i came to learn what triggers her crisis and for her it is cold and dehydration. I make sure she is always kept warm (not hot since that could also trigger a crisis) and drinks lots of water. I started making her drink water from 6 months so she got used to it, now she willingly drinks over a litre of water daily because it is like second nature to her. She hasn't had a crisis in nearly 3 years now. Lastly, there is lots of research and new drug development going on which provides hope of treatment for our children, so we need to be POSITIVE.
You will be in my prayers. take care of your baby.
Thank you everyone for your support and encouragement. I still am afraid of what the future holds, but I am coming to grips with it a little more and doing all that I can to educate myself.
This helps so much.
Thank you for sharing with me :-)! I've been making all of her baby food homemade, so I will give these options a try. I know she is too young for the nuts and strawberries but when she is able to I will use these in her diet.
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