We have a new MRI date... Monday!

After some calling around first thing this morning, I hope to have all of the diagnosis/insurance/etc... information worked out for Madi's upcoming MRI.  The new official date is this coming Monday.  Madi will have a 10:15 scan, with a 9:15 check in, so we will leave at 8:15 am.  Though I'm happy to get to sleep in a little more, it's also harder on madi to go that long without food or drink, so please keep her in your prayers.  The scan is scheduled for 4 hours, though I think it will take only about 1 1/2-2.  I plan to call the hospital Thursday or Friday and make sure that they have all of the pre-approvals that they need this time.  Please be praying it all goes well.  Thank you!

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

 

New Easter Wheelchair Decorations

I took the girls to Michaels to pick new wheelchair decorations and they both picked Easter-themed decorations.  For the first time ever, they both also picked similar decorations!  The main difference was that Madi wanted frilly green eggs at the top and chicks on the wheels, and Ramya wanted no chicks on the wheels and birds on the back.  They are very proud of their new chair decorations!  I actually decorated them about a month ago, but I'm just finally getting pictures up for all to see :). 

Madi's Wheelchair...

 

 

(It's hard to see but the ribbon is chicks hatching out of eggs)

 

 

 

 

 

And Ramya's decorations (she also had two adorable bunnies at the top of her handle bars, but they got beheaded when her chair was getting loaded, so I had to take them off)

 



 

 

 

 

Madi's Scoliosis Brace and Upcoming MRI Date

Last week we picked up Madi's first scoliosis brace.  She was very excited to pick up her brace and was even more excited to try it on.  She gave it a few kisses and announced that she "loved it." 

 

Madi with Ron Whiteside, our go-to guy at Hanger that we love

Then we brought it home, put it on, and she realized she loves her brace.... just not when it's on.  The first few days of having her wear it were a little rough, involving some tears from both of us.  Unfortunately it makes her body stiff, which throws off her movements and balance.  It's hard seeing her feeling limited in her mobility, as her movement is already limited.  I kept reminding her (and myself) that it would stretch out soon and would feel more comfortable, and that she would learn how to move around in it and get used to it quickly.  Ramya and Conner have also been encouraging her to keep trying, it's very sweet.  I am so very thankful for her amazing determination and positive attitude.  She really is adapting quickly to it and is doing very well.  I am thankful that she will never let anything slow her down, especially not an adorable little pink scoliosis brace!

Madi takes off her brace when she stands in her HKFOs, goes potty, and for a few little breaks here and there.  She also does not have to wear it while she sleeps.  Sometimes I'll notice she doesn't have it on and I will ask her what happened to it.  She will tell me, "I said, "bippity, boppity, boo, and POOF!  It disappeared!"", which really means, bittity, boppity, boo.... I used it as a door stop, mom...

 

 

Did I ever mention that she is creative?!?!?  Ha, I love that girl.   Yesterday I took Madi potty, got her re-dressed, and then told her she had a few more minutes and then she would need to put her brace back on.  I walked out of the room for a second and when I walked back in, she was wearing her brace.  Apparently Conner put it on her, correctly, and she was pretty excited about it.  He was pretty excited and proud as well.  He got the brace in the right place, and even had the straps buckled the correct length.  I was pretty impressed!  Here's a video of Madi explaining why she wears her brace...

 



 

In other news, Madi's head and spine MRI is all set for this Tuesday, February 25th.  We have an 8 am check in at Cardon Children's Hospital, so we will leave around 7 am.  She will have to be sedated and they said to plan for up to 4 hours, though I think it will be closer to 2 hours for the scans.  They are doing 4 scans, and set the estimated time at the max time for each scan.  Her little body just won't take that long to scan, though.  She will have to go NPO (nothing by mouth) and midnight. 

Please be praying that Madi handles the anesthesia well and that they are able to quickly and efficiently get the images they need.  Pray that the anesthesiologist will let me go back with her while she falls asleep, which is really huge for Madi's peace of mind.  Pray that she wakes up calm from anesthesia, as she usually wakes up very confused and angry.  Please also be praying for wisdom and discernment for her neurosurgeon, Dr. Moss, as well as David and I, as we determine if and when she will need detethering surgery.  If she needs it, I am hoping we can wait until May, when she is out of preschool.  Not only would it be summer break, but also, she will be homeschooling full time after that and we will be a little more flexible.  Our homeschool co-op, which she loves, will also be on break for the summer, so she wouldn't miss homeschool co-op.  I am also praying (and PLEASE join me in prayer for this) that her scoliosis isn't truly as bad as her x-ray looked (where she was sitting on her out-of-socket hip) and that doing the surgery, if we decide to go that route, will actually reverse her scoliosis so that she does not have to wear a brace any more, or at least not all day like she wears it now. 

Thank you for being our prayer warriors!!

Ramya's Adoption Day Celebration

We decided that for Ramya's adoption day every year, we would use the day as a time to remember Ramya's story and to spend time together as a family.  I asked Ramya where she wanted to eat to celebrate, and she wasn't quite sure.  Conner suggested Indian food and ice cream, and her face lit up very quickly!  She loved the suggestion!  So, Indian food and ice cream it was.  We went to one of our favorite Indian food restaurants, Tandori Times 2.

 

 

When Ramya first came home, she wanted nothing to do with Indian food.  Things that were her favorites, like idli, didn't even tempt her.  After a few months, she started liking Indian food again, especially dosa and chana masala, and she didn't mind spicy foods.  Her tastes have changed, though, and now her favorites are saag paneer (which she used to not like at all) and naan.  She no longer likes spicy food and will not even eat things with a tiny bit of spice to them.  Thankfully she also likes my coconut curry chicken, which I try to make pretty often, since all my kiddos really like it. 

 

After dinner we went to a frozen yogurt shop where you get to pick your yogurt and toppings (then pay by the ounce) at her request.  She got vanilla yogurt with m&m's and was very happy!

 

After dessert we came home, got ready for bed, and watched the movie of our India trip.  She was very excited to watch it again and talked about all of the pictures.  Conner and Madi were very excited as well, and Conner kept putting his arm around her.  It was very sweet.  The three of them really do love each other very much!

 

 

 

I am almost done scrapbooking Ramya's adoption story, and we will add that in as well once it is complete.  I also want to make a book for her that has pictures and tells a simplified version of her story before coming home. 

 

Our time together was sweet and Ramya really enjoyed our celebration of her and our adoption!

 

 

One Year Home... Ramya's Adoption Day

Today marks one year since I walked out of Vathsalya with Ramya.

One year.

Wow, it doesn't even seem real!

I STILL look at her and think, "I can't believe she is finally home!"

This was one year ago, today, in India (please excuse the date.... the camera was on US time, not India, but by the time we left, it was actually the 7th in the US as well)

 

She flew to us from across the Ocean, but she flew straight in to our hearts, where she has always belonged. 

 

This year has been a whirlwind, filled with so many different emotions for all of us.  It has been filled with so many firsts for Ramya, and so many blessings for us. 

 

First time asleep in her momma's arms....

 

 

 

First airplane ride...

 



 

 

First donut...

 



 

First ice cream cone...

 

First appointment... in her momma's arms instead of alone....

 

 

 

First time meeting her family...

 

 

First birthday home...

 



 

First Easter egg dying...

 

 

First petting zoo...

 

 

First pony ride...

 

First time swimming...

 

First vacation and first train ride in Colorado....

 

 

First wheelchair and first decorations....

 

 

First trip to Flagstaff and Grammy and Papa's cabin...

 

 

First aquarium...

 

 

First trip to the beach....

 

 

 

 

First trip to Disneyland...

 

 

Our US re-adoption day....

 

 

First pumpkin carving...

 

 

First trick-or-treating...

 

 

First ball....

 

 

 

First pigtails...

 

 

Her first Christmas....

 

 

 

 

Her first time sitting on Santa's lap...

 

Her first snow...

 

 

Her first time fishing....

 

 

 

And her LAST time being alone, ever....

 

 

 

My sweet girl, we are so thankful you are home.  We love you more than words can ever express.  You are ours, forever, and we cannot think of a more perfect and amazing gift than the gift of you.    Thank you for blessing us so abundantly and for letting us love you. 

 

 

 

 



 

 





 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



 

A Great Car Seat Deal- Convertable Evenflo Carseat

Not sure how long this deal will last, and I'm not sure the ratings on the seat, but right now Amazon has an Eveflo Tribute for $59.99!

 

 

 

Evenflo Tribute 5 Convertible Car Seat, Saturn