Madi Dancing in Her HKFOs using her Rifton Dynamic Stander... Spina Bifida Can't Slow Her Down!

Madi loves to dance and often puts on "performances" for us.  She's loving her new stander and wanted to try it forward facing.  That, of course, lead to a dance performance.  Today it was "Let it Go" from Frozen.  This girl is just too cute!!  When the doctors told me all the things she wouldn't do, they forgot to mention that none of it would matter because of how amazing she would be :).

 

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....

 

 

 

So Frusted Today!!! Canceled MRI....

Well, today did not go like I planned!

At 4:25 today I got a call from Banner Cardon Hospital.  They were not able to get prior authorization from Madi's secondary insurance APIPA/CRS for tomorrow's MRI.  After doing some research I discovered that it's because CRS (the medical clinic Madi goes to for her appointments), who actually are the ones who put in for the MRI, put Madi's diagnosis as hydrocephalus.  APIPA/CRS wouldn't authorize it because her diagnosis was listed as hydrocephalus.  While Madi does, of course, have hydrocephalus, her main diagnoses are spina bifida (which IS what is covered by APIPA/CRS), Chiari II malformation, hydrocephalus, and epilepsy.  They do not see patients at CRS based on the diagnosis of hydrocephalus alone, nor does the insurance plan cover kids based on hydrocephalus alone.  Of course, they waited until most offices were already closed to call me, so now I can't get it figured out today.  I was able to get ahold of Dr. Moss's nurse, who said she would make some phone calls and get back to me, but at this point, it's 6:00 and I still haven't heard back, so I am guessing she couldn't get ahold of anyone and went home.  Though I know there must be a reason we are not going in tomorrow, and I trust in God's plan, I am just feeling frustrated with all of the fighting and miscommunication.  There is always a phone call to make, an office to talk to, something to fight for.  I am also dealing with trying to get Ramya her next Lupron Depot Pediatric shot (another long story) and am trying to fight to get Madi's Rifton Mobile Stander approved by insurance (another long story again), as she really needs a size medium.  I love my kids, and I will continue to fight so they can get what they need, but sometimes, it just makes me tired.  I also do a lot of prep work for appointments and scans, coordinating child care, shopping so I can plan diet-specific meals while I am away, preparing for the worst-case-scenarios just in case, cleaning the house so grandparents can come watch the kids, and all of that fun stuff.  I am so thankful for the energy and drive that God gives me, because that is what keeps me running this race!

I'll update everyone once we get another date set.  Thank you for keeping Madi and our family in your prayers, and please keep it up!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

- Isaiah 40:31

 

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. 

 

 

Madi's Dance Recital

Madi had a little dance recital at the community center a few weeks back (actually, the day of her seizure.  She had the recital during the day, the seizure at night).  She was so proud of herself and was beaming the whole time!  She told my mom and brother/sister-in-law that they were going to come and bring her flowers, so of course they did.  How can you say no to that?!?!?!  She did an amazing job and we all really loved watching her.  She's such a little joy!  Here are some photos and videos from her day...

 

 

 

(I love the little wave she does on this one ;))
 

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 :).



That's How She Rolls!

Madi was very resistant to going in her mobile stander.... until we had her stand backwards in it!  She can get up close to everything now and loves having that freedom. Here's a few photos of her using it:

 

 

She is so much happier now!  I love it!



Our Rifton Stander at the Science Center

I had really cool news to share, but need some time to get it all together.  In the meantime, I have been wanting to share these photos from the science center (I'm a bit behind... we went a while ago!!).  We took Madi's Rifton Dynamic Stander and it worked out really well.  She had a blast cruising around and interacting with everything!  Conner had a blast too, and I bet you can figure out by the picture what his favorite part was ;)

.... Yup, you guessed it right.  His favorite thing to do was walk through the stomach, then slide down the intestines to get "pooped" out.  Such a boy!!!!

A Very Merry Christmas

We had an amazing and blessed Christmas this year.  We were very lucky to be surrounded by friends and family that love us, and that we love.  Here's some photos from our special day!

Baking Gluten-Free Sugar Cookies

Spending time with our cousin, Micah

Aunt Angi and Cousin Lauren

Madi and her papa

Spending time with Cousin Nathan

Love this photo of the boys!!

Enjoying time with Grams and Granddad

Us being our typical selves

New fingerless gloves... perfect for zooming!

And some for Conner too, of course :)

Merry Christmas Ramya!  We love you and are preparing our home for you!!

Enjoying Christmas with Grammy and Papa

Our new Christmas gift.... yeah for Craigslist!  It is wheelchair-accessible

Another new gift... a sand and water table that has adjustable heights!



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!

A Piece of Equipment We Love

I blogged a while ago about getting Madi a Rifton Dynamic Stander (mobile stander).  I haven't updated about it for a while and thought it was about time!  I really love Madi's stander.  I love that she can easily wear her HKFOs to use it and that it keeps her upright and weight-bearing.  Another thing I love about it is that it puts her at eye-level with the other kiddos her age.  She can maneuver it very easily and get where she wants to go.  Most importantly, Madi loves her stander as well!

I've talked in the past about trying to vary Madi's activities while she stands up.  Usually that is a mix of spending time using the walker, spending time in the learning tower, spending time holding my hands to walk, getting carried in her HKFOs, and spending some time in her Rifton mobile stander.  Madi is two, so she likes to keep busy.  Changing activities often keeps her happy and also keeps her upright, which is so very, very important for her.  It's important for her bone growth, muscles, bowels and bladder, circulation, and so much more!

The only thing that I wish I could change about the stander is I wish it had a removable handle. I'd prefer to take this out, instead of Madi's wheelchair, but it's hard to use in busy parking lots and places like that. Because of the design, I have to bend over to push Madi, and it is hard to safely maneuver Madi around without killing my back and while watching Conner. Madi is amazing at getting around in it without help, but I always push her in the parking lot to keep her safe (ask her how much she loves that ;). She always yells, "NO! I DO IT BY MYSELF!" and gets upset at me).  I have plans to try and get someone to rig a little handle for me, so I'm hoping I can work something out there.  Other than the lack of the handle, the stander is amazing!!!

We bought a little table that works great with Madi's mobile stander.  We got it at Costco and it was only $20 but it is adjustable to four heights.  It fits when she is standing in her HKFOs, when she is in her stander, and when she is in her wheelchair; it's great!  I love easy and simple solutions that are affordable! Here's a picture of Madi using it in her stander:

We eat at the table, do stamps, color, paint, make food, and so much more.  It gets a lot of love!  In fact, it has some paint and ink stains to prove it!

If you want to check out Rifton's stander, you can go to http://www.rifton.com/products/standing/.  They also have a blog you can read at http://www.rifton.com/adaptive-mobility-blog/. 

We found our stander on craigslist and were able to buy it because of the money we get through Madi's amazon associates account.  Anytime you purchase through Amazon and use Madi's link, we get money back that we use towards therapy equipment and other equipment that insurance won't cover.  THANK YOU to everyone who purchases through her link for us!!  You are such a blessing!  http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20 

Such an amazing blessing!

I just got the tax information in the mail from Madi's Amazon Associate's Account.  Last year, our commission from Amazon purchases was over $800!!!   Can you believe it?!?!?!?!  It has been such a HUGE blessing to have this money for Madi.  With it we were able to purchase forearm crutches, her Rifton Dynamic Stander (mobile stander), her little training pants so she can have "big girl undees" and her First Toddle system, which got her WALKING!  I wanted to say a big "thank you" to everyone who purchases through her link and/or shares it with your friends and family.  I know it seems like no big deal, but it really amounts to something huge!  We are able to give Madi those "extra" things that add so much to her quality of life and self-esteem because of this money.  THANK YOU for blessing our family!

http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Madi showing off her stander....

Proudly displaying her "big girl undees"... Don't ask me how her legs can do that!  At least she is getting good at fixing them and not 'w-sitting'!

Showing off her first toddle system

We modified a little purse from the consignment store for Madi's stander.  Now she has a place for all of her treasures and her baby dolls!

Madi loved meeting Corbin of Zebra Sports at a friend's party.  She thought his chair was pretty amazing!

P.S.  Madi's stander is a Rifton Dynamic Stander.  For more information, go to http://www.rifton.com/products/standing/ :)