Sickle Cell Warriors


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Pack it Up!

Pack it Up!




Pack it up!

The first hospital stay proved just how unprepared we were.  Days went passed and I didn’t have soap, a real toothbrush or a change of clothes.  We had no recreation besides television there was nothing to do.  We sung nursery rhymes and told each other silly stories and took lots of naps.  This motivated me to be prepared next time. 

A week after we returned home, I made a plan to pack both of us a bag.  My goal was to make sure my SCW had as much of a balanced day as possible.  I wanted to make sure we worked on her learning something each day, reading and some fun too.  My profession as an assistant has me in the habit of planning all things out.  So making a list of things to go in each bag was the best route for me to do this correctly. 

I asked my baby what she would want to take with her to the hospital.  I wrote down all she said and pre-packed her general things like; a throw, underwear, socks, footies, comb, brush, ponytail holders, an outfit and one pair of her favorite pajamas.  I put a reminder note on the outside of what toys to pack before we leave.  Then I focused on what I would want.  I pre-packed underwear, pajamas, 2 outfits, toothbrush, bath towels, deodorant and socks.  I also attached a note to the outside to bring my laptop, a box of my favorite snacks and menus to order from.  The plan was to be able let her watch movies on Netflix and also for me to get some work done.   Then I placed both of the bags in the front closet by the door. 

Her next hospitalization happened on Sunday night.  On Monday, a young lady came in and asked my Zbaby if she wanted to go to the playroom.  We didn’t even know one existed because we were always here on the weekend after hours.  And although she could not walk to go to the playroom; they brought toys to her.  She was ecstatic! I used her preoccupation to my advantage and took a shower, comb my hair and order food.  For older children there was a computer room as well as Wii games in the playroom they could play.  My older children could come visit and go to the computer room and take a break.  This was another lesson to always ask questions to see what things the floor has to keep the children busy while they are hospitalized.  Most children’s hospitals have provisions for children to still play.

The first three weeks of December 2013 was her most recent hospitalization.  The second day there, a teacher comes in and gives me paperwork to sign my baby up for tutoring while in the hospital or being homebound. These tutor sessions will count as a day of school. This way she will not have to fail kindergarten due to being ill.  I never knew this existed until now because she was in preschool.  The completed paperwork was then sent to my daughter’s school and upon her being sick the school will send a tutor to the home or a hospital tutor will come to her room.  Kindergarten students only get one hour of tutoring but older children get more hours depending on the grade.

Pre-packing for the hospital is just the first step to many.  Parents have to ask what resources are available at the hospital for their children too.  No one will come out and offer theses extra services so you must become your child’s advocate to get what you need and want.  You can never be too prepared!

Editor’s Note: Adults and those with sickle cell can also use this tip! I have my hospital bag in my car, and it has 3 days change of underwear, t-shirts, heating pad, blanket, spare emergency pain meds, favorite snacks, water bottle, and my spare phone charger. I throw in my electronics and I’m ready to go.  I also noticed that when I take my bag into the ER, I tend not to get admitted…;)

About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior. I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can. I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

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  1. Clint
    Clint July 16, 12:45

    hello!,I like your writing so so much! share we
    keep up a correspondence more about your post on AOL?
    I require a specialist in this space to unravel my problem.
    Maybe that’s you! Looking ahead to look you.

  2. Elle Jenae
    Elle Jenae Author July 16, 13:01

    Thank you for your comment. I appreciate the your support. I am not an expert in problems with SC but I thank you again for the comment. Be Blessed! Elle J

  3. sapphire
    sapphire November 27, 20:22

    Hi Elle, your write up is awesome. I did not know this but you have just given me an idea of what to pack.

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