D.M.E.......or "Durable" medical equipment....

CONVAID CONVERTIBLE

Faith and her baby cousin, Aiden, in her new "temp" chair.

I am posting a blog here in response to a blog over at Dr. Boucher's blog TherExtras (http://www.therextras.com/) . Dr. Boucher had been discussing selection of wheelchairs/standers and the like . So I decide to put my two cents in and discuss our experience with the dreaded DME. (Go visit her great blog!)

I apologize in advance, for the long post.....

First off.... Faith has had about 3 things in this category ordered for her since birth. All in the first yr and a half of life. All from different providers, All with problems. A stander (way too big, she was 16lb when it was ordered and when it arrived it would fit a child over 100lbs!!!) A Britax Traveller...(also too big for a one yr old, really w/ our experience, although great for her now, four+yrs later) and last but not least a small bath chair for her before she could sit up (NO complaints about this piece! LOL!)

Now, on to our wheelchair experience... the heart of this blog.

We were approached by our original PT about 2 yrs ago about getting a stroller system for her b/c she was getting too big for an umbrella stroller. We were still in the "issues" faze and were resistant to getting a wheelchair or anything like one. So we procrastinated, lost our PT, got a new PT, Faith got bigger (bigger Too quickly) and before we knew it last year in NOVEMBER we were in a bad way for something to move her around in.

So we approached our PT, who was not really informed about all the potential options/styles/vendors/choices. After 2 months of begging we finally got her to bring in the DME comp. that our therapy place works with. A few more months passed, another meeting, and a lot of discussion about wheelchair vs stroller style.

We did A L O T of research on our own b/c we were not provide it through ANYONE else. Trouble was in our small part of the world there are no Vendor showrooms, hospital chair clinics or even any demos to try out. More time passed, we had chosen one that we liked and thought would be a good option for Faith. We chose the Convaid Convertible chair, a stroller type wheelchair that folds up like an umbrella stroller and also has removable wheelchair wheels. Our thinking was that we could fold it up (very important) but she could still have the potential to learn to use it like a wheelchair. We DID A LOT of research, did I mention?
Now, I will say that our mobility co. did expose us to a Quickie brand wheelchair that they were delivering for another client, but nothing else until we became insistent to try something out.

The problem lay in that our mobility co. wanted her to get a regular standard ole' wheelchair and we wanted the Convaid. Our therapist, at the time, was no help, throwing her money wrench into the mix with the suggestion for a power chair! (NOT appropriate for Faith, who has poor fine motor skills)

Well, miracle of miracles, they finally got their hands on a demo of the Convaid and let us BORROW it for a few weeks. We loved it and were sure that it was what we wanted. So we laid down the line and insisted on this chair. We asked for a purple Convaid Convertible with the double flap trunk support strap and the clear tray so that she could use it during speech therapy. Basically, that was it. Oh yeah, and the issue about size! After using the stroller (12 in model, smallest they make) we were concerned that she might not make it 5 yrs in that size (required amount of time that TEFRA says we have to keep the chair). The equipment guy assured us that she would not outgrow it commenting that he didn't for see her growing that much in 5 yrs!!!! Mind you Faith is perfectly average in every way regarding size EXCEPT her head! LOL! So the chair was agreed upon and the requests began.

Doctor prescrip required stating the ridiculously specific info about the chair and why we needed each piece. Medicaid/TEFRA approval required for the ridiculously specific info for each and every piece on the chair. Ordering for the ridiculously specific chair, which was supposed to take no more than 2 weeks!

THAT WAS IN APRIL, FOLKS!

After a ridiculously long post, we finally got the chair last Friday! After our request to TEFRA were denied based on their insistence that they already bought us one (they did NOT, although they did rent us a special wheel chair when Faith was in double leg casts in Feb. for 30 days, at a total cost of $155) Anyone out there know where you can buy a ped. wheelchair for $155???? Give me a call, PLEASE! After "they" (unknown organization/gov. agency/Convaid) lost our order 3 different times.......... we did get the chair!!!!

Trouble is..... the FREAKING chair IS TOO SMALL!!! Faith's hips came to the absolute edge of the chair, her feet went to the next to the last notch in the foot plates and her shoulders went to the last notch for the shoulder straps in the fancy multi positional padded three point harness system (that we DID NOT ORDER). Now Convaid does say that it will hold a child up to 66 lbs in this transport model. Faith is 42lbs, 42in tall! Oh did I mention that the tray was no where to be seen, the arm rests were also missing?
Explanation....... well, we only have a few.... the armrest story was that when it was initially ordered they were standard but by the time we were lost 3 times they were no longer standard! Now who has ever heard of a wheel chair without armrest. That's like a wheelchair w/o wheels!

So after a ridiculously long post..... we are here.... they agreed to take the chair back...(Praise GOD) and graciously agreed to include armrests at no additional cost! ( Thank you, oh glorious Convaid, I will be remembering you in my will!).
And they say.....all of this should take less than a month! We will see.

I will say the chair is exactly what we wanted, barring the errors. And if you check my last post, within two times of Faith being put in the chair, she has learned to use the wheels! We are excited to get the right one, sometime in the next 100 yrs.....wait should we have gone 2 sizes up?????????

SO WARNING TO ALL YOU PARENTS, THERAPISTS, CARETAKERS OUT THERE.... BEWARE.... even if you think you have done enough, DO MORE!

RESEARCH, RESEARCH, RESEARCH..... DID I MENTION HCRAESER (research) ?????
RECALL, DEMO, DON'T BE DISMISSED AND MOST OF ALL FOLLOW UP WITH EVERYONE!

More thoughts on progress.....from a miracle veteran!

So, I have some more thoughts and remarks and reports on progress about the potential in our children. I had blogged about some of the miracles I have witnessed since Faith's birth. She continues to amaze me and catch me off guard, even me as her "Head Cheerleader" and of course, mother. We finally got her new wheelchair on Fri. morning, we were very excited and full of anticipation the night before. Unfortunately, the chair isn't right, she is already filling up the seat and almost at the max. possible adjustments on the chair. A fact, I pointed out to the equipment guy over 6 mo. ago when we were ordering it, asking if we should not get the next size up since she has to keep it for 5 yrs! Anyway, I digress, this chair was a big point of contention with the equipment guy, our therapist and us. We wanted a stroller type chair that did not look so much like a wheel chair that could fold up compactly but allow her the potential to learn to push it herself. We chose the Convaid Convertible Cruiser, with a stroller style and removable wheelchair wheels. A very nice chair that we really wanted. After much debate and MONTHS of arguments back and forth, we got everyone on board. The equipment guy and her therapist at the time did not think that Faith could learn to push a chair like that or maybe that she would not be able to manage it w/ her tone. HAHAHAHAHAHAHAHA! Of course, my miracle child proved everyone wrong! Today, her second time in this chair, while waiting for OT in the hallway....(one of her favorite places for miracles, you know, when she used her first sign) she put her little hands on the wheels and pushed that chair forward! Then backwards, then forwards again!!!! By afternoon, she was really getting the hang of things! She was sooo proud of herself! And of course, God showed me again to NEVER assume anything! We have not worked with her yet in this chair, mind you! She figured it out all on her own, that little rascal! She wanted to push it everywhere we went, even though she hasn't figured out the whole concept of holding on the outside part of the wheel. So when she pushes it she gets really dirty hands and she hasn't quite figured out to keep moving her hand back to keep going straight ahead. But I KNOW she will. We as parents of special children suffer with all kinds of uncertainty, it's a bad side effect of the job. But we MUST learn not to doubt or assume about our children. We all suffer from this at different stages. I know parents with adult special needs children, babies, and teenagers. The worst is for parents of young children, when you are just starting out on this rugged terrain and are so uncertain of our children's future potential. I KNOW I have been there! But they will find their own way to surprise us. They will, I promise! It may not be the things we had in mind or the way we had in mind or what we thought we wanted. But they do! I tell you the truth. My little girl is a rolling, giggling, happy, loving, carefree bundle of miracles! Just think about all of the small things that your child has overcome, just living is a miracle in itself. Especially if they had a traumatic birth or health problems that complicated their lives. But we must look at these children as miraculous gifts given to those who GOD has chosen for various reasons. I believe, in my heart of hearts that I was born to be the mother of this special girl. I know I say this alot but it is so deep in my heart there is no doubt! And I am proud to be that! I feel like I am blessed in ways that most people do not get the chance to be. I don't know why, I don't think I am special or anything crazy like that, but I do believe that I am BLESSED and so is my daughter. I hope that this inspires other parents like me out there, to look at the smallest things in a different light. GOD is performing miracles, every day, right in front of our eyes!

Grandmommas, Cars and Llamas

A blind gentleman and a lady with unidentified special needs

What is that?

Mom, can I keep it?

Look at those eyes "BEE"

Oh, I love your hair!

Diving dogs!

I'm outta here!

So this week has been a fun filled week, we took off from all our therapies and Grandmamma came to visit! My mother is Faith's only grandmother, since Carl's mom passed when he was 15. She lives in NC, so we really only see her once or twice a yr. She had fun visiting the beautiful Blue Rdg Mountains that we call home ( there's nothin' like 'em! LOL), shopping at thrift stores and all of my cheap grocery hang outs!
We made a trip to Brevard, NC and Faith got to ride her first car ride(outside a grocery store)! FUN with a capital F! We also visited the NC Mountain State Fair on Fri., Carl took the day off and we boogied up to Fletcher, NC for the day. It's a very agricultural based fair with lots of animals, crafts, produce and of course rides and ridiculously priced food! It's is one of our fav. fairs! Faith loved seeing all the animals BUT from afar, NOT up close! There was a particular camel that was infatuated with her and her new wheelchair, but she DID NOT share the same affections for it! LOL!~ She got to ride a little fiberglass horse (you know, the kind that used to be outside the grocery store) and she LOVED it! I thought we were going to have to pack that thing up and take it home! She particularly enjoyed the craft building that had rows of amateur photography submissions, she rolled down each aisle and pointed at every single animal picture! SOOOO CUTE! I really liked the petting zoo, they gave us a bag of carrots for Faith to feed the animals but she was having nothing of that. So I partook! I got some great shots of some really cute Llamas, camels, goats, funky cows(bulls) and a few bovines that I couldn't identify

The other cool thing was that there were TONS of people with special needs there the same day, the first day of the fair. We saw a group from a group home about 20 or so w/ all sorts of people. Then I saw a whole bunch of elderly folks w/ walkers, wheelchairs and canes. I saw blind people and people with service dogs. It was sooooooo cool to not be alone out there and to see so many folks out enjoying the fair! I took a bunch of shots of folks I saw as I ventured around the fair. They all looked like they were having fun! Also we got special front row seats to the Frisbee dog and dock diving dog program! We were trying to find a place that Faith could see the dogs but no one would move over, so the MC of the program lifted the gate and gave us backstage access right up next to the dock, so Faith got to see the dogs jump right in the water! FUN! We also snuck in a couple of adults with CP with us and they had a blast, hooting and hollering and clapping! I will be posting some great pics of our adventures so enjoy!

What I have seen, confessions of a mother........

It seems like there is a pattern of posts, lately, about special needs children and their capabilities and potential. So I thought I would toss my hat in the ring and talk about some of the things that I have witnessed as a mother of a child with cerebral palsy.
I remember when Faith was born and all the terrible things that happened. It didn't seem real, but we got all sorts of "bad news" predictions about how she would be. Some were true, some were not and some were close. But I have learned over the last 5 1/2 yrs that potential is what you make it. When she was little, I would watch her and talk to her and wonder "Does she know who I am? Does she understand me? Will she ever be able to talk? Will she ever call me momma?" I used to agonize over things like that. So to answer those questions.... Yes, she knows me! Of course! I am her mom! Yes, she understands me, maybe not every word but if I ask her where is a dog she can point out our dog! Talking? Well, that is still a work in progress, she is making more sounds and some sound like words. But she does have her own collection of languages, both real (ASL) and made up that we can understand. And best of all, this spring, we finally got something that she calls me for mom..... "Ahhhna" Which sounds alot like Mama and will be accepted with pride!
I think that the worst thing for all parents is the uncertainty of what our children will be is magnified ten fold for special needs parents. And the delays in development make things seem even worse, it's like watching paint dry! Every one else's kids are cruising right along past our children, doing new things, going to school, learning to ride bikes and play dress up. While our children are still mastering how to sit up. It is definitely one of the worst things about being a parent like us.
But, everything has a season and all children can progress. Maybe not like others, but in their own time at their own pace. It can be hard for us to see, especially when our special children are very young. For the longest time, over 4 yrs, Faith had NO form of communication. She would watch us talk to her, but never respond other than a smile. Then last year in July, we were waiting outside of her therapist's office for our turn and a little baby girl came out with her mother. Faith reached out and make a gesture towards the baby, so I said BABY and signed the word. All of a sudden, she copied me! She actually did a sign, and did it correctly! I was FLOORED! Called every one I knew to brag on my girl! After that it was like a light bulb was turned on! She wanted me to show her everything! Right now, 14 months after beginning, she has about 40 signs that she can do w/o much prompting. And she is always asking me (with her own made up sign for Help) to show her more, when she sees something new! It is truly a miracle! After 4 1/2 yrs!
I think that sometimes God has to teach us patience so that we can truly appreciate the miracles that go on around us. I used to think I had never seen a miracle, but after Faith was born I witnessed many miracles! I am a miracle veteran, now! And He has taught me patience! I treasure every small thing that she learns or masters, even if it isn't quite how other kids do it! And as Katy from Bird On The Street said, disabilities are part of the human condition. We all have our own things to master and challenges to overcome. Some are just more obvious than others. I have learned about patience, persistence, resolve, determination, strength and most importantly FAITH AND UNCONDITIONAL LOVE! And those are things that not everyone is blessed enough to experience in their lives, truly!
I KNOW beyond a shadow of a doubt that I was born to be the mother of this child, just as she is, just like God made her. And for me that is a big source of pride.

Your biggest pride?

Ok everyone, I was thinking about somethings that several moms out there have made post about recently. About seeing the small, "Giant" steps that our children take everyday in life that many thought they could never do. This got me to thinking about all of the things that Faith has mastered and overcome in the last 5 1/2 yrs. There was holding her head up and then there was sitting up, at almost 2! BIG, I tell you! Holding things in both hands, learning her own version of a commando crawl, then hopping and now walking on her knees! SO many of these things seemed like unrealistic expectations for sooooo long. I used to think (sometimes, still do!) how is she going to get all these vital things? How are we going to teach her? What will happen if she doesn't do certain things. But then I see her learn something ALL BY HERSELF! Like how to open the top on a PEZ dispenser, (TODAY!)! She thought it was the funniest thing ever! And so did I! So I wonder about how all of you look at these things? What are some things that your babies have learned to do, that maybe you didn't think they would do or surprised you with a new skill, out of the blue? It brings me back to thinking about what Katy wrote in her list a few days ago about assuming the best, instead of the worst! Because MY daughter CAN cover her eyes and play peek a boo in her own way! SO FREAKING CUTE! And she gets things, things that I didn't think she got! What are some of the small things that you are really hoping for?

Glasses,NO??!!!!!???

I am posting a link to Katy from Bird On The Street's blog, she compiled this great list for being a parent of a special needs child and it is SOOOOOOO GOOD! Go check it out, if you haven't already! http://birdonthestreet.blogspot.com/2009/09/beliefs.html

Faith had an eye doctor appointment, today. It was her first with this new doctor from Emory. A woman, but as with most eye doctors, kind of weird, don't talk much and bad bedside manner. Anyway, Faith was put in glasses when she was 9 months old, they said she had farsightedness, strabismus and ambliopia. But she never tolerated the glasses. She lost almost every pair she ever got! Everytime we would go they would say her prescription was off. I don't know how they can tell specifically with small babies but it was never right! So for a while we just stopped going b/c we were frustrated and couldn't get anywhere. So we met this new dr, today, and she said that Faith didn't need glasses. She still has the strabismus and ambliopia but her vision, itself, was w/i normal limits. So she said that she wanted to review all her major med. records primarly dealing with her brain tumor (on the optic pathway) and her neuro. status before she made an official finding. But she thought that Faith would benefit from surgery to correct those two problems. So we go back in 3 wks to see what she thinks. But I find it very interesting that she didn't think that glasses were nessessary. I asked her if her vision could have improved but she said that alot of kids are farsighted when babies but it goes away, and maybe it just took hers longer b/c of the neuro complications. Who knows? Anyone out there an opthamologist? Then dialated her eyes and so for the whole afternoon she was squinting at everything! Poor baby! I left the house this morning at 7:15 and didn't get home til 4pm! It was a long day w/ the doctor and therapies in two different cities an hr apart! So I dropped about 160 miles today maybe more. BLAH!!!! If anyone out there has a child who has had eye surgery can you please contact me, I would like to ask some questions. Thanks!