An Exciting Day.... Oxygen AND Mobile Stander Were Delivered TODAY!

Today was such an exciting day!  We got both Madi's new Rifton Dynamic Stander AND her oxygen delivered today!  Yeah!!!

Getting a larger Rifton Dynamic Stander has been a long fight with insurance since the beginning of the year.  Madi had outgrown her small stander and was long over-due for a medium.  I've had doctors and therapists help appeal, I've written letters myself, I've printed off research and submitted it, and it was still getting denied.  Spina Bifida is the only diagnosis that CRS (Children's Rehabilitative Services) will consider a stander for, and I knew that Madi should be getting approved.  We had even re-submitted with a CRS therapist trying to make it happen, yet it was still denied.  I finally gave up because it seemed there was nothing more that could be done.  But then, it got approved, out of the blue, and it was totally a God thing.  A few Sundays ago at Church a lady named Michelle came up to me and introduced herself.  She said she wasn't sure if I knew who she was, but that she was Michelle from CRS.... the Michelle I had chatted with previously on the phone.  She had seen Madi's stander denial and realized it was sent through wrong.  She had it re-submitted and it got approved!!  They didn't even tell me and I had no clue!  Madi and I were so excited!  While we were on vacation I got a call to schedule drop-off, and it was delivered today.  Hurray!  Madi already spent about 2 1/2 hours in it today.  She was just so excited to get a new one that fits her well.  We are also borrowing a different stander from a friend (long-term borrowing :)), since we didn't know when we would be getting a new one.  It doesn't work as well as the Rifton for Madi, but I tried it out on Ramya tonight and it worked well!  Now they are both zooming upright, which is awesome!

While we were on vacation we also got a call that Madi's oxygen order was ready.  I had noticed that what seems to make the biggest difference in stopping her seizures is oxygen, and had asked her neurologist if we could try having oxygen at home.  I'm praying that being able to give her one rescue med and put on the oxygen right away will stop them quickly and effectively, allowing us to bypass multiple rescue med dosages, 911 calls, and ER trips.  The neurologist submitted the order and I also got a call to deliver it while we were out of town.  I had a mini-heart attach when the neurologist office called to confirm the order went through and told me that preferred homecare, the medical supply company the order was submitted to, said it was delivered on the 17th.  Since we weren't home on the 17th, I was envisioning tanks of oxygen sitting by our front door.  Thankfully they misspoke, and the 17th was the day the called to set up delivery.  I set the actual delivery date to today.  The guy showed me how to use the tanks and they seem pretty easy.  I'm praying I will not need to use them, but am thankful to have them here if I do. 

Another positive from today is that I think I finally solved a medical billing issue we were having from one of Ramya's Lupron Depot Pediatric shots.  I had a $1,400 bill that should have gone to our secondary insurance that they kept billing me for.  Today I got a notice from a debt collector (thankfully an internal one and not one that would effect my credit) saying I still owed the bill, though I really don't.  It's taken multiple days and multiple hours on the phone, but it should be all settled now thankfully! 

Today I also put in some phone calls with centers that do in-home speech therapy so that I can get Ramya evaluated and begin therapy if it is needed.  The developmental pediatrician felt that Ramya might really benefit from it.  Her speech and articulation are great, but she struggles a lot with her auditory processing skills and things like that.  Hopefully I can find her a good provider by the end of the week. 

Oh, and we also had craniosacral therapy for both girls and also squeezed in a trip to the chiropractor for all of us.  It was a nice, productive day!

I think that's about it for exciting news and updates.  Tomorrow is a hearing test for Ramya and homeschooling.  Here are some pictures of our new, fun equipment...

Madi picked the color raspberry for her new Dyanic Stander....

 



 

Our new oxygen tanks....

 

 

 

Madi's Little Feature on the Rifton Blog

Madi was featured on the Rifton blog, dancing in her HKFOs and with her Rifton Dynamic Stander.  You can see her feature at...

http://www.rifton.com/adaptive-mobility-blog/blog-posts/2014/january/special-needs-equipment-dance. 

Enjoy!

Our Fieldtrip to Cerreta's Chocolate Factory

I've been wanting to take the kiddos to the local chocolate factory, Cerreta's Chocolate Factory, for a free tour and chocolate tasting.  We are taking a break from homeschooling for the holidays, and it seemed like the perfect time to go!  We went with another family that also homeschools and goes to Church with us.  We had a lot of fun!  

 

 

This happens to be the creepiest chocolate I have EVER seen!

 

We've been working on getting Madi out in her mobile stander more, so she happily used her Rifton Dynamic Stander for the tour.  She is outgrowing it, though, so we are praying we can get insurance to cover a new one.  We bought this one used, out of pocket, for $500, but they are $3,000 new!!

 

Conner is holding a 10 pound chocolate bar... yum!

So Many Recitals! Dance and Band and Church, Oh My!

We have been busy, busy, busy!  I have a lot to catch up on blogging about, but some of it will have to wait :).  In the mean time, here are some cute videos of the kiddos in their recent recitals.  The last few videos aren't really recitals, but Madi will put on a show whenever she gets a chance ;).



First off, here is Madi, dancing her heart out in dance class.  She sure loves dancing!  She uses her HKFOs and Rifton Dynamic Stander (mobile stander) to keep her standing tall with her friends.  She loves it and we are so proud of her!

 

Next up is Conner's performance at Branches Homeschool Co-Op, the homeschool co-op we go to on Thursdays.  He had so much fun and was so proud of himself.  We are really proud of him too!  The band also played at a local assisted living home, which Conner really loved, as did those that they performed for. 

He decided that next he wants to play keyboard, and I happen to know what he is getting for Christmas, so I think his dream will come true ;)

 

This is a little performance the kiddos did at Church a few weeks back.  The kiddos had a lot of fun, especially the girls.  Madi and Ramya both talk about wanting to dance on a big stage (like my niece... we go to her dance performances at high school a few times a year)... and they got their wish!

Here are a few cute little videos of Madi jamming on her new little Barbie guitar.  My mom got it for her for her birthday, and she loves it!  She is such a ham.  The first video is of her playing while she's standing in her HKFOs and Learning Tower.  The second video is of her jamming out after she got some fun colored hair, thanks to the hair chalk my birth mom, Deana, sent the kiddos.  She said she had rock star hair, and decided to make up a rock star song to match. 

 

 

Dance Your Heart Out, Madi!

Madi just LOVES dance class and it doesn't get any cuter than this!  Go Madi, go!

 

 

(Madi uses her rifton mobile stander (backwards) and her HKFOs in dance class :))

First Dance Class!

Ever since we saw my niece dance at a recital, Madi has been asking to sign up for dance class.  I went in to our local community center (Conner does karate there) and talked to the instructor about modifying the class for her.  She was totally on board so we signed Madi up.  Today was her first day and she was all smiles!  She was totally on cloud 9!  Here's a photo and a video from her first day...

 

 

 

 

So fun!!  It is ballet and tap, so we are going to bring her little clickers to use with her hands during the tap part :).



Yeah for Rifton!

Rifton read my post about needing a handle for our dynamic stander and sent us one that is technically for another piece of equipment but that they thought would work with her stander.  We got it today and so far, it seems like it will work great!  We have it on right now and I took a few pictures so you could see it (ignore the Halloween decorations... haven't gotten around to getting those down yet!!). 

We plan to test it out today so I will come back and update everyone on how it works.  It was very easy to install, though, so I was excited about that!  I've also been very pleased with Rifton's customer service. 

I took this picture of Madi earlier today (before the handle came).  She wanted to go out for a stroll in her stander, and for some reason, insisted on a helmet :).  It was cute!

That's better!

Madi is adjusted correctly and LOVING her mobile stander!  She is doing amazingly in it and is all over the place.  I'm so glad she loves it!

In other news, today is Conner's 4th birthday!  Conner is such a sweet and caring little boy.  He is smart and funny, curious and determined.  We are so blessed to be his parents, and we know Madi is very blessed to be his sister.  Last night I looked over and saw that Conner had cuddled up next to Madi and had his arm around her while they slept.  He is very tender-hearted.  Happy birthday little man!

I think it's official.... Madi's in love!

With her new mobile stander, that is!  When I got home from the grocery store I saw a big box waiting for me.  We were late for dinner, so I was really bummed not to have time to rip the box open and put her in it, but I was good and waited.  As soon as we got home I took it out and was excited to see that it is in very good condition.  Madi saw it and started squealing and yelling "momma, chair!" over and over.  I told her I had to adjust it for her and she got very upset.  She wanted in it NOW.  She is two after all, and she wants everything right now.  I tried to run and google how to adjust it, which made Madi very upset.  She kept crying and saying "momma, help, chair", which was very pitiful.  I quickly found the pamphlet online so that I could get it adjusted and ran back.  I got it half adjusted and started putting Madi in it.  I had her about half in when I couldn't get her to hold still long enough to finish.  I kept having to chase after her to attempt to finish strapping her in, which of course turned in to a fun game.  Madi was zooming all over squealing and laughing.  It was really adorable, and it made the money worth every penny.  I got her in well enough to at least stay in, so I let her be and we just played while she was in it.  Tomorrow I will fix it correctly for her.  Conner saw the box and was in Heaven.  Forget the $500 thing that came in the box, he just wanted the box.  Typical boy, I'd say.  He was very disappointed when I told him that I would not sleep in the box with him tonight.  He found an extra piece of cardboard and told me it was a comfortable pillow for my head.  Then he tried to cover me up with bubble wrap so I'd be warm.  It was very cute.  I told him we could clean out the bubble wrap and he could sleep in the box, but when he found out I would not let him put the box on my bed, then go to sleep in the box, he decided he'd rather not.  Here's an adorable video of Madi with her new Rifton Mobile Stander and Conner with his new box.

Look what is coming to live with us!

Ok, ok, so it's not actually THIS stander, but it's one like it!  I have spent countless hours on the phone this past week calling every lending closet I could find or that was recommended to me, only to find out that not only did no one have a mobile stander, but most people did not even know what one was.  I called the spina bifida association and any other place I could think of that might be able to help.   I called CRS (children's rehabilitative services) to beg them to get one for Madi, but found out that they do not pay for standers at all.  I guess it was a blessing in disguise that Madi was not on APIPA (state insurance) when we got her stander, because it would have been denied.  Since Madi's secondary insurance is APIPA we have to go through CRS for anything Madi needs.  The problem, then, is that even though APIPA will pay for durable medical equipment that your child is written a prescription for, they make you go through CRS to get it.  And, since CRS doesn't provide standers, it doesn't matter that APIPA will provide durable medical equipment, because you cannot get the equipment from anywhere but CRS.  We do have a primary insurance, but can't get the prescription until Madi's orthopedic surgeon is back from out of town after the first of the year.  That means we have to pay a deductible of $2,500 IF they will cover it, so basically it would end up the same as just buying a new one without going through insurance.  Ugh. New Rifton Dynamic Standers are a tad over $2,000 (a small is $1,458 and the wheels for the small are $774), which just wasn't going to happen.  I posted an add on craigslist, but got no replies.  I searched the local craigslist, as well as national sites where people sell used equipment.  I joined a few yahoo groups to try to locate one.  I kept coming up with either nothing, or something that was still too much money.  Finally I got the idea to google "craigslist and small rifton dynamic stander".  This brought me to an ad in Florida for exactly what we needed... a small Rifton Dynamic stander for $500.   Madi had enough money in the account where we keep her Amazon Associates money, as well as birthday money she gets and any money that was ever given to us for her, so we went ahead and bought it.  I talked to Ron at Hanger and Tami her physical therapist about it first and both said it was a really good deal, that it would be something very beneficial to Madi, and that it would last many years for her because it is very adjustable.  Both highly recommended that we get it for her.  I am praying it is in the condition it was advertised in and that it arrives safely.  Sending someone that much money and having little recourse is a bit nerve racking!  I have a UPS tracking number (the lady we bought it from is awesome and had UPS e-mail us when she brought it in so we would know they had it.  She also forwarded all the info about the shipment to us) and am stalking it, but it looks like it won't be in until late next week. Long story short.... MADI HAS A MOBILE STANDER!!!  YEAH!!!  I know she will love it!  I will update with pictures as soon as we have it!

Putting out a wanted list :)

After talking with Tami, Madi's physical therapist, we decided Madi would really benefit from a mobile stander.  It would allow her to be upright and at the same height as other children her age, but would still give her great mobility.  Her HKFO's are wonderful for weight-bearing and walking, and the mobile stander would not replace what the HKFO does.  We  would still want her to use her HKFOs as much as she can/wants to, but a mobile stander would be good for her when she's not in her HKFO's (she is currently in them a few hours every day).  Right now she crawls, goes in her HKFO's, and uses her wheelchair throughout the day.  The mobile stander would probably be more something we use at home, then her wheelchair when we go out.  It is like a wheelchair but it helps hold the child upright so that they still get good circulation and their muscles stay nice and stretched.  Being upright does wonders for the bowels and bladder too!  The bad news, though, is that insurance will not cover HKFO's and a mobile stander.  I am going to contact the local Spina Bifida association and see if they have one in Madi's size that we can borrow, but I figured I'd throw it out here too.  If anyone has a mobile stander their child has outgrown in Madi's size (she is two and needs a mini or a small) and they are wanting to sell it, please let me know!  We are officially on the lookout!

Here is what a mobile stander looks like:

Here is a link to a mobile stander that Tami recommends:

http://www.rifton.com/products/mobility/dynamicstanders/index.html

And here is what they say about the standers:

Stronger bonds. Stronger bodies.

Eye to eye, smile to smile – engaging with peers is so much more rewarding for children with special needs when they can interact in an upright and mobile position. And the Dynamic Rifton Stander makes it easy – even for kids with no weight-bearing ability.
The Dynamic Stander gives children who would otherwise be wheelchair-bound greater independence and mobility. Even more important, this mobile wheeled stander helps strengthen critical motor skills so a child can progress toward independent standing.


Freedom to explore


With the Dynamic Stander’s removable large wheels in place, children can self-propel in a standing position – free to explore their surroundings alongside their playmates.


Freedom to participate
Pop off its removable large wheels, and the Dynamic Pediatric Stander easily rolls right up to a table or a counter for participation in crafts and other stationary activities

 
If anyone knows of a place that loans out mobile standers, other than the spina bifida association, please let me know!