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Tuesday, 19 January 2010
A new item will soon post. Be sure to check in often . . . if your child needs a gait trainer! Yep . . . gait trainer . . . FREE . . . only here!
If you have PT questions, you have to contact my biz partner, Amy Alley Foster. You can do so via our "contact us" button. She not only diagnosed our daughter's stroke but continues to provide amazing advice that has made all the difference. And, seriously, she knows more than most of Jai's specialists. (Please know that this should not replace advice, treatment, etc. from your child's specialist. Just had to say . . . or our attorneys will go crazy.)
Jai had Botox therapy in early December. Three days later, she was no longer scissor-stepping and has really made some amazing progress. AMAZING! TRULY! At $400 a pop (after insurance), I'm glad it's working. We should have done it sooner but once we found an amazing pediatric neurologist, we took the leap of faith . . . and it's paid off for our girl.
Our "typical" has an unofficial "interview" with the peer Pre-K program at Jai's school next week. Keep your fingers crossed. Jai's sis would love this program. And I believe she would benefit it as well.
I still hate the disability but love love love the child! The amount of love and joy she gives us is priceless.
Parents with special needs kids . . . hang in there. Please know that you are not alone! We're here for you and we want to hear from you!
Wednesday, 13 January 2010
I have to admit that I am a bit frustrated. Or as my friend says it, "flustrated."
Co-creator Amy and I looked at our web statistics tonight. This site is averaging 1500 hits per month. But we don't get a lot of listings. That leads me to believe . . . great idea, poor execution.
If you have ideas for our site, please let us know. If you have thoughts about how we can get families to donate their used equipment, please let us know. Currently, we have a long list of "wants" and a small list of "haves."
We are currently working to get more Safe Exchange Sites throughout Kansas. Our goal is to get this site and its ability to help families to a point that it helps families nationwide. But we can't do that without your help.
Again, we welcome your thoughts. We definitely welcome your used DME. And we welcome you to return to our site to see what's new.
Oh, and by the way, I have a very nice gait trainer that will soon be listed. FREE! I bought it used for $100 for my daughter who has since outgrown it and now it's time to pay it forward. So, stay tuned.
Meanwhile, I will search for a solution and work to get over my frustration.
Friday, 30 October 2009
There are certain words we absolutely do not use in our house. The "s" word (stupid). The "d" word (dumb). And don't even get me started on the "r" word.
Life with a special needs child means watching what we say, protecting her from seemingly harmless words that could forever impact her and practicing what we preach. After all, everyone is watching. It isn't the average parenting situation. We answer to special education teachers, paras, a speech specialist, a hearing specialist, a vision specialist, a PT, an OT, an ENT, a neurologist and more.
We constantly hear, "Have you tried this? Have you tried that?"
Yes. We've tried everything! Anything to make her better!
Choosing Halloween costumes is no different.
Our three-year-old "typical" child (because now, the "n" word is a no-no) decided on a Wizard of Oz theme. Initially, she wanted to be the Cowardly Lion. But once she saw the Dorothy costume meant for her older sister, she changed her mind.
To Jai, it doesn't matter. Not yet. To Jordy, the feisty "typical" three-year-old, it does. So our game plan changed. But that meant we would have to revamp Jai's costume.
"I will be Dorothy, Jai will be the Scarecrow, Daddy will be the Tin Man and Mommy will be the Wicked Witch of the West," Jordy proclaimed. After I recovered from being called a witch, I started to think about it.
What a cute Scarecrow Jai would make! It would be okay if she were floppy in her costume, tripping all over the place. It just made sense. And then, I started to overanalyze.
?What would everyone think if we dressed Jai as the Scarecrow?!' I thought. ?His whole thing is, ?If I only had a brain,' and Jai has brain damage from a stroke!'
Doubt set in.
Concern set in.
Paranoid thoughts of how that would look set in.
When I talked to my mother about it, she agreed Jai would make a great Scarecrow. Once I shared my concerns with her, she said, "I would have never thought of that!"
And she meant it. It was no criticism like, "Jaime, you're over-thinking it." It was, "You're right. We can't do that."
Why? Because the whole world is watching. When you are a parent of a special needs child, the world is watching. Or at least it feels that way.
For Jai, the Cowardly Lion it is. And that makes even more sense. The girl needs some courage. She needs to fight off her disability, have some nerve and stand up in this world.
Courage. Not the "s" word. Not the "d" word. Definitely not the "r" word. Just courage.
If the world were a Halloween Express and we could all choose a costume, what would it be? Would it summarize who we are or who we want to be? I choose the latter of the two. I would select the "Amazing-Mom-Juggling-Work-And-Family" costume. Maybe not who I am but who I strive to be.
Words. Costumes. Who knows if either is important! If the world is really watching our special needs child, they will be impressed. Because at the end of the day, Jai will show up at your door and say "trick or treat" despite her disability, despite the fact that she has parts of her brain missing, despite a possible lifetime of hurdles to overcome. She'll show up. She'll play the game. She'll find hope, strength and courage. Just like the Cowardly Lion, she'll say, "Put ?em up! Put ?em up!" And she'll be the better for it.
Thursday, 13 August 2009
Be your own advocate. Be your child's advocate. If not, all your worries are ignored and questions are left unanswered.
Four days after waiting for a neurosurgeon to dismiss my mother from the hospital - or to tell us if she needed surgery asap, the doc was no where to be found. So we found ourselves sitting in the hospital needlessly while others needed care for two extra days. Finally, I called the neurosurgeon's office and had him paged. Boy, was my mother mad! But if you are not your own advocate, who will be?!?
The same with Jaiden. The first neurologist we visited was negative and very "we'll just have to see." Not good enough. Lie to me. Cheat me. Make me believe my daughter will be okay. I need that. I need positivity. I need a "glass half full" type of person to help my daughter. So, we switched neurologists and our new one, while lacking in people skills (with adults), is amazing with our daughter and very informative (while avoiding eye contact). Amazing!
If no one will fight for you, YOU fight for you. If no one will fight for your child, YOU fight for your child. Life is too short to wonder "did we do enough?!" Do enough. Be the advocate! It will make all the difference in the end.
Sunday, 09 August 2009
Last blog was in March! I've obviously fallen behind! It's not that we lack dedication as we are very dedicated to our dream to recycle durable medical supplies for kids . . . it's just been crazy.
Back to the sandwich . . .
It was the Friday of Memorial Day weekend. I got a call from my dad. "Don't freak out," is always an unpleasant way to start a conversation. "Mom's heading to the hospital." My mother, a relatively healthy 62-year-old half-retired golfing fool was having chest pains. Oh, no, not chest pains. Maybe. But half of her body wasn't working. STROKE!
I kissed my kids and halled it to the ER in Wichita. After a few days of doctors arguing, trying to figure out what was wrong, they finally ruled out a heart attack and a stroke. As my partner in crime, PT Amy Alley Foster, called it, it was stenosis. Stenosis is narrowing of the spinal cord and it pinches the nerves. Loose definition. Her stroke-like symptoms were because of stenosis - which also explains why nothing was affected from the neck up.
One month and one neck surgery later, I find myself joining the "sandwich" generation . . . those who take care of their children and their parents. I don't really mind. I've always strived to be the "favorite." Now, it's happened naturally. So, while juggling my special needs child and my high-maintenance "genius" child, I feel compelled to take care of my mother.
A lot has changed since January. A lot has changed since March. And that's how life is. Ever-changing. Jaiden's improvement since she started school in October has been amazing. My mother's decline since January has also been amazing. I find myself taking care of two generations and falling behind on everything else. After all, it's all about family.
So, while I humbly ask for forgiveness for neglecting this blog and this site, our eyes are still on the prize . . . recycling your stuff and finding you "new" stuff to help your kids. Life just got the best of me . . . and I can only juggle so much.
Thursday, 05 March 2009
I just loaded two new items to our site! It's about time! We've made three exchanges to date and have had nothing available until tonight!
My fear is that when our visitors take a look and see nothing, they won't return once we do have items. So, please, keep your exchanges coming! Our "Want" list continues to grow but our "Haves" list is short!
In January, I received an e-mail from a woman in Kansas City. She asked about our site and wanted to know if we had plans to extend it into their community. My answer was "yes, definitely!" This site, while based in Butler Count, Kansas, is intended to help families from any and all communities through our state - and throughout our nation! So, if you see an item listed from "Butler County" but you live in, say, Johnson County, please inquire about the item! Our participants are willing to make "exchange" arrangements such as shipping it! Let's not let distance separate us and keep us from meeting our children's needs.
Thank you to all of you for your wonderful e-mails of support! Please keep visiting our sites! Please rummage through closets for your children's used equipment! Please keep passin' it on!
Friday, 02 January 2009
Thanks for all your support and ideas for our website. And a special thanks to all of you who have agreed to provide Safe Exchange Sites . . . White Eagle Credit Union (Augusta, El Dorado & Newton), Pickard Insurance Agency (East Wichita), El Dorado TrueCare Pharmacy (El Dorado) and Cooper Drug Store (Augusta).
We have already gotten great response about kidsDMExchange.org. And many are responding who do not have special needs children or equipment to exchange. They want to know how they can help!
Want to get involved but don't have anything to exchange? Check out our http://www.kidsdmexchange.org/ WISH LIST:
Safe Exchange Sites! We would love to have safe exchange sites available throughout the state (heck, even throughout the nation). Our number one priority is to create a network for families exchanging durable medical equipment for their special needs children. In doing so, we want to keep all participating parties safe and happy. That is why we ask that visitors who are making a "local exchange" do so in a safe, public place. We are working with area businesses to create safe exchange sites. These businesses allow "exchangers" to meet and make "local exchanges" in their place of business during normal business hours. These businesses are not responsible for any part of the exchange process. They are offering their location as a safe place to meet at no cost to this website, the listing or the receive parties. They are not endorsing our website nor the products traded via this website (although we'd like to think they like us). We need more safe exchange sites. Let us know if you or your business is interested!
ADVERTISERS! We are not a 501c3 but we are not-for-profit but for the greater good. There are small costs involved such as monthly hosting fees, advertising, etc. We welcome any business owners who want to advertise on our website to contact us for more details. Without having advertised yet, we are already getting over 100 visitors almost every day. And it keeps growing! (Advertising on our site is not considered a tax-deductible donation but rather an advertising cost and can be claimed as such.) Any co-op advertising is greatly appreciated as well!
EQUIPMENT & VISITORS! Please pass this information along so that we can get the word out and so that others will start recycling their used kids equipment on our site! The bigger we get, the better we get . . . and the more kids we can help!
Again, thank you for all your support!
Jaime & Amy
Thursday, 01 January 2009
Happy New Year! And Happy Exchanging!
Today kicks off the first "official" day of kidsDMExchange.org and we couldn't be more excited! While there are very few items currently available, some great things are coming our way. In fact, we have two walkers that will soon be posted and other things to come.
The success of this website depends on you! If your child no longer needs or has outgrown durable medical equipment, sensory items or communication devices, please "pass it on" via our site! The response thus far has been incredible and we anticipate many will become involved in posting items and exchanging them. We still encourage you to donate your items to organizations from which your child receives therapy. However, if they can no longer house your items, post them here and pass them on!
Happy New Year! At kidsDMExchange.org, we hope that you have a very prosperous, blessed and fulfilling new year. And we hope that your child continues to make gains and continues to improve for his or her health, happiness and success. God Bless.
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