Everyone asks us “What can we do to help?”. For a family like ours who is dealing with immeasurable stress financially, emotionally, physically… there are many ways to help our family specifically or in larger ways that Kyleigh will directly benefit from the efforts.
The bigger picture
There are several organizations from which Ky has (and will continue) to directly benefit. If you are ever looking for a good charity to donate your time, money or talents to here are a few. Whether you choose to make a monetary donation in Ky’s name or just volunteer to help out… please know that your efforts are changing the lives of SO MANY including our own! Thank you!
The Makenna Foundation – One of the largest donors to the Kentucky Children’s Hospital. Two of their main events include: Evening of Champions Derby Eve Gala and The Art of Making Miracles. We invite you to join us next for a rockin good time on Derby Eve!!! Be sure to visit the Foundation’s website and find ways to donate!!!
The Ronald McDonald House – Whether here in Lexington, Cincy, Chicago, etc… the Ronald McDonald house is close to our hearts. They truly are a home away from home for kids and their families! There are MANY ways to donate to this organization. Contact your local house and ASK. They always have a list of NEEDS that are as simple as soap powder and toilet paper to sheets and linens. The easiest thing you can do… save the “tabs” off your soda cans. Put them in a bag and drop them into the collectors at your local house. A significant (and surprising) portion of the Ronald McDonald House’s income comes from these pop tabs!!!! These tiny little things make a huge difference!
RMHC of the Bluegrass (House and Chapter)
1300 Sports Center Drive
Lexington, KY 40502
Phone: 859-268-0757 Fax: 859-266-8683
RMHC of Greater Cincinnati, Inc. (House and Chapter)
350 Erkenbrecher Avenue
Cincinnati, OH 45229
Phone: 513-636-7642 Fax: 513-636-4887
RMHC of Chicagoland & Northwest Indiana
1900 Spring Road, Suite 310
Oak Brook, IL 60523
Phone: 630 623-5300 Fax: 630 623-0808
Contact the Hospital Directly:
Cincinnati Children’s Hospital
On a Family to Family Basis
Here are some great ways to help ANY family dealing with a medical crisis! (taken from our blog March 16, 2008):
- Bring a meal to the hospital.
- Cook a freezer meal for when they go home.
- Stock their freezer / fridge with items so that they don’t have to go to the store once they get home.
- Offer to run errands… just going to the grocery or pharmacy is a huge help when you can’t leave your ill loved one.
- Steal them away for a pedicure or massage. The one thing that kept me going through the heart surgery month was when my best friend drove 6 hours to drag me to a hotel to sleep… go to dinner and go home to do laundry.
- Offer to pick up their mail and bring it to them at the hospital. I cannot tell you how many late fees we have paid on bills simply because we were not home to GET the bill!!!
- If you are not a cook or even if you are… give a gift card to a restaurant in the area of the hospital. Just knowing that you have that card to spend whenever you need coffee or a burger without worrying about finding an ATM or what you bank account balance is… is HUGE!
- Clean the house, the fridge, etc.
- MOW the grass or take in / out the garbage. If you see a friend’s lawn overgrowing… just mow it… don’t ask… just do it! We were moved to TEARS when we came home to a perfectly manicured lawn that our church friends had taken care of for us.
- Bring a new toy to the child, magazines to the parents… the hospital hours run together… night turns into day and even a short stay can seem like YEARS! A NEW toy can be hours of fun for a child and truly take some stress off the parents being couped up in a tiny room!
- Leave a note on their Caringbridge, blog, website or even a simple text message just to say you are thinking of them.
- Call them to remind them of a sale or something “normal”… from home like that its Thursday and don’t forget that Grey’s Anatomy is on.
- Offer to take their car to gas it up… nothing stinks more than only having an hour to get home to shower and get back and hopping in a car with NO GAS…
- Give a GAS gift card if they are far away.
- The perfect gift to give any hospital family is a plug in for the wall like Bath & Body Works Wallflowers… that way their room doesn’t smell so “hospitaly”… or a nice lightly scented air freshener spray… Febreeze ones are great! The bathroom doors always open straight into the rooms and it stinks to have to “go” and then stink up the entire room! LOL
- Crochet or knit a special hat, booties, or blanket for the child. Use good soft yarns because we usually don’t wash them at the hospital… but its nice to have a little something special to keep your child warm.
Ways to help our Family specifically: IMMEDIATE NEEDS!!!!!!!!!!!!!!!!
Spray N Wash Dual Power (I use one of these PER DAY!) – I use this to pre-treat all of her sheets and clothing that has poop stains. They are the hardest thing in the world to get out! Drugstore.com
Cleaners - We go through an ungodly amount of cleaner each month. Every single morning I strip her bed and sanitize it by wiping EVERY spindle, mattress, etc with Clorox Wipes. Then spraying with OUST air and surface. It bubbles where there are still bacteria so it makes finding the icky stuff easier. I wipe that off again and then finish with clorox spray. Then I lather, rinse and repeat on her changing table. I also have to clean the bath tub in between EACH bathing and between the boys and her whenever she is in a rash breakout. We still have not determined if the RASH can be spread so I am extra cautious. Buy Clorox Wipes , Oust Spray , Clorox Anywhere , Clorox Spray here at Drugstore.com
Huggies Size 4 or 5 (or larger!) Diapers - Ky will most likely be in diapers until she is 4-5 years old and can have urological surgery to make her continent. Kyleigh chances of urinary continence without medical intervention is less than 1%. We have come to terms with this. Huggies are our preferred brand… others we have tried irritate her skin! And yes the Cucumber wipes from Huggies are great! She does fine with those also (for those who have asked!) Diapers.com
DREFT Liquid Detergent!!!!!!!!!! We go through at LEAST one economy size of this per month!! I do 2-3 loads of Ky laundry per day. Most days we have 1-2 sets of sheets and diaper pad covers to change, and 3-4 outfits, socks etc. Most of these things have to soak in BIZ to get the tube feed and poop stains out. Her medications also stain something awful and many of her blankets etc have “senna” stains on them. Thanks to the generosity of a blog reader she is currently sleeping on new deluxe beautiful pink sheets so I am trying my best to keep them pretty and new!!!!
Powder, Lotion, Baby Wash – We go through a TON of this stuff as Kyleigh can sometimes have a bath 3 times a DAY! WHY? When she is having a BAD pooping day this is the only way to really get all the poop off and keeping her from becoming a blistered mess is to bathe… again.. and again! Also… POWDER … we literally use an economy size bottle every two days. It REALLY helps to keep her from being rashed and blistered as she leaks urine literally ALL the time. Buy POWDER , LOTION , BABY WASH at Diapers.com
OR…. you can visit our gift registries online which have lists of various items that we are in need of… currently… due to the amazing generous donations of our blog readers we are stocked up on Lysol wipes and spray. Ky also bathes more than a normal child- on an average day 2-4 times so we go through a LOT of Mr Bubble Hypoallergenic bubbles (white bottle)… Lots of times when Ky is having a blister outbreak on her bum… the best way to clean her without hurting her is to stick her in the tub. Which is why she bathes so often.
We have also received many generous gift card donations that have helped offset the cost of daily needs like baby shampoo, baby powder (which we go through a huge econo size every three days!), lotions, etc. We truly appreciate each and every Random Act of Kindness that has been shown to our family and I find myself with tears in my eyes when I think of how grateful and Thankful we are to have the love and support of so many… even those we have never met!!! THANK YOU!
Other commonly asked questions: Ky’s DRESS size is 2T for winter and 2-3T for summer, her shoe size is 5-6 or 18-24 mo in Robeez, Ky DOES need some soft soled shoe- like Robeez, Bobux, Target brand, etc…. because of her Chiari she has pretty noticeable balance issues and does NOT do well in “real” shoes. Its been a challenge to find shoes that are soft soled and large enough to fit her feet. Pajamas also have to be TWO pieces or MUST button up. Any zippered sleeper will not work because of her feeding tube.
Please feel free to contact us with any other questions or comments! We love hearing from everyone!
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