Fun on the Beach

We are a beach family, so going to California means LOTS of beach time!!  The girls prefer to build castles and moats and let their toes touch the water.  Conner prefers to be in the water the whole time and boogie board.  They all have a blast though!  Here are some beach pictures from our trip....

 

Getting our "tootsie toes" in the water

 

Where my feet are happiest....

Fun with Friends and Family on Vacation

We spent most of our trip with friends and family, it was great!There were more friends and more family we would have liked to see as well, but time just ran out, or schedules didn't work out.  We are blessed with a lot of people we love, and that love us as well, that's for sure!!  Here are some pictures of our treasured times with friends and family....

Meeting the Orr Family at Disneyland for the First time

 

 

Traveling with Family... Both My Parents and David's

 

 

 

 

 

Meeting up with My Birth Dad, Mark, and His Wife, Michelle

 

 

Meeting up with Girlfriends and their Kiddos on the Beach

 

 

 

 

 

 



Our Disneyland Day

The kids had a blast at Disneyland.  It was really crowded, even though it was a Friday, but we still were able to go on all of the rides we wanted to.  The new Disney system for helping those with disabilities didn't slow us down, so that was nice.  Both girls loved the Dumbo ride the best, and Conner's favorite was Indiana Jones.  They all had so much fun! 

I have more photos of our vacation to post, but I am going to post in chunks based on the theme :).  Here are some photos from our Disneyland fun...

 

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....

 

 

 

Our California Adventure Fun

I'm behind on blogging because we didn't have good internet while we were on vacation, so I've decided to post our pictures in spurts.  First off is our fun day at California Adventure!!  We came in to California on Tuesday night, on Wednesday we ate dinner at Goofy's Kitchen, and then Thursday was California adventure.  It was so much fun!

Goofy's Kitchen....

 



 

 

California Adventure Park

(My parents came too!!)

 

 

And of course there was dancing!!  Madi doesn't go anywhere without dancing.  Conner and Ramya were on the cars ride and Madi didn't want to go, so I walked her around.  We were watching the jazz band and they asked for a volunteer, so she raised her hand and they chose her.  She couldn't have been more excited!!