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....

 

 

 

Therapy is a family affair...

I've posted in the past about how important I think it is for us to share therapy as a family.  To work together, to learn together, and to help each other out, because the difference for a child is not made during that one therapy session a week; it is what you do with your child every day that helps them the most (at least that is my biased opinion ;)).  Yes, therapy is extremely important, and we love our therapists to death, but the biggest difference we can make is working with our children every day and integrating what we learn in therapy into our daily lives.  Usually I talk about Madi's therapies, but today, you get to see a glimpse of Conner's therapy world. 

Conner started speech therapy about 10 months ago. At 3 years old, he was really only understandable to us and my mom and our pediatrician felt that that it was time to get some extra help.  We tried going through the district but we were not getting the support we needed.  I learned afterwards the district we live in is well known for that.  We tried for months to get him evaluated, and finally found an opening at Sunrise, which is the company Madi gets her occupational therapy through (though hers is in-home and Conner's therapy is at their center).  When he started, he was testing as having a moderately severe need, and is now down to moderate.  He tests again in a few weeks, and we are praying that he is able to test out because we have to pay out of pocket for his therapy, and well, at twice a week for 30 minutes, it adds up fast!!  His self-confidence has soared, though, and that is priceless.   

Madi comes to the majority of Conner's therapies and it has really helped her out as well.  She is talking more and more (actually, she never stops :)) and is getting more understandable every day.  It is really cute because Conner "teaches" her at home as well using strategies he learns in therapy.  He's a great big brother.  Miss Patti, Conner's teacher, always makes it Conner's choice if Madi is included or not.  She lets him choose if Madi gets to listen to his words with him, or play a game with him.  About 90% of the time, he chooses to share.  He is always taking care of his sissy!  Miss Patti is great with Conner and makes therapy fun for him.  Though I will not say he loves practicing his words at home, he is really starting to self-correct himself and is VERY proud of himself for catching and fixing his mistakes.  If I make a mistake, or at least he thinks I do, it gives him even more pleasure to catch mine.  Sometimes I mess up on purpose, just so he can correct me.  They say we learn best by teaching others, right??? 

Conner has come really far and I'm very proud of how hard he tries.  He's a very determined little boy, and pretty much everyone can understand now, which is huge!  He used to get very frustrated with people not understanding him, and though we taught him a lot of sign language, many people do not know sign language, so it was hard for him.  I could just see the disappointment in his eyes when he could not get his message across.  Now we get to see his excitement instead, and it is wonderful!