Tuesday, March 06, 2012

Cool Stuff for Complex Kids

In the recent weeks, we have found a few very cool organizations that offer/sell products meant to make life as a kid with complex medical issues just a bit more fun and KayTar now has several super cool things headed her way! I wanted to share that information here, so more kids like KayTar can benefit from these neat programs and/or to highlight some great organizations that would be very thankful for a donation if you felt like sending one their way.

First up, there is TubieFriends (who just launched their website yesterday!). This organization was started by a group of moms with complex kiddos who wanted to create/provide stuffed animals with the same medical accouterments as the child they are made for, so they can have a little friend who is just like them! They use Build-A-Bear animals and have TubieFriends Surgeons place g-buttons, PICC lines, O2 cannulas, you name it! You can look around the website and see how happy they have made these kiddos! You can also visit my friend Leah's blog and see a post about her son Nolan and his new TubieFriend. He is having surgery tomorrow to have a fundoplication done and a g-button placed so his TubieFriend was his gentle introduction to his new accessories. Isn't that cool?! They ask parents to pay $8 for shipping IF they can afford to, otherwise it is a completely free, donation-driven organization. If you happen to have any Build-A-Bear coupons lying around from the recent McD's Happy Meal prizes, send them their way!! It will only cost you a stamp and it will help make some kiddos VERY happy! They have only been able to do AMT Mini-One or Mic-Key buttons, so KayTar couldn't get one like her (she has a BARD), but when I posted to inquire about whether it might be ever possible, another mom said she had a BARD she could donate...so KayTar's TubieFriend is now in the works! She is going to be SO thrilled!!

Second, there is Beads of Courage. Beads of Courage provides a wide variety of beads that each symbolize a type of medical intervention, like surgery or having an IV placed or having to sleepover in the hospital, ect. I've known about Beads of Courage for a while, but unfortunately our hospitals do not participate in this awesome program. My friend, Heather, recently wrote about it and I learned that they now have a distance program AND a new chronic illness program. Previously, your hospital had to participate in the program AND you had to have a specific condition, such as cancer, cardiac problems, or burn injuries to participate...but now kids like KayTar, who have been through years of medical treatments and testing without one of those specific diagnoses can benefit from this program! I can't tell you how excited I am for her, now after every yucky, un-fun poke, prod, surgery, test...she will get a special bead in the mail. She'll be able to tell people what her beads mean and SHOW people what she has been through. Not having a diagnosis does NOT mean you haven't been through the medical wringer! She has 137 beads heading her way...and that was just for the non-regular kid stuff that I have written record of. I think there is more that I've overlooked, but it is a solid start!

Finally, there is TubieWhoobies, which is not a non-profit organization like the previous two, but it still deserves to be included in our list of cool stuff! It is a small company run by parents of a medically complex kiddo and they make the CUTEST g-tube pads I have ever seen! The pads cost $5 each, which is pretty standard cost-wise, but they are so adorable AND I discovered that she takes special orders. I ordered KayTar a few Sock Monkey pads! She is going to love it! G-tube pads are generally used to keep the area around/under the tube or button clean and dry. KayTar doesn't have issues with leakage, so we don't need them all the time, but occasionally she does get a rash (yeast or staph) around her tube and we need to put medicine on it and keep something over it to keep it in place. However, she is VERY sensitive to adhesives and so securing split gauze can be tough and make more irritation that the rash itself does! It will be great to have some SUPER cute g-button pads around for those times. TubieWhoobies also makes PICC pockets (to keep PICC lines secure) and custom made hospital gowns, too!

KayTar's new goodies will be arriving over the next several weeks and I will be sure to post photos and her opinions when they get here! She knows about her Beads of Courage, but the other things will be surprises! I can't wait!


Magpie said...

Those are cool sites. Thanks for sharing them; I'd probably have never seen them otherwise.

Jo said...

thanks for the heads up on beads of courage. I have wanted Little Man to participate, but he falls between the cracks in terms of support, even though he has endured many nasty medical procedures.