One Week Home

Whew!  This week has seriously flown by.  I can proudly say my luggage is all put away and I am mostly caught up on laundry.  Right now that feels like a pretty big accomplishment!   

When we adopted Ramya we had so much support in the way of help with the house every-other-week and meals every-other-day.  This time David had to go back to work the day after we returned from India and we aren't very connected in Tucson yet so life picked right back up very quickly.  We did have a few dinner gift cards to use, though, so we were able to order carryout a few nights, which helped.

Deena is adjusting really well and keeps us laughing.  She hates the bird and does not want it close to her, so that can be interesting, but I think eventually she will decide the bird is fun.  She mostly wants to be held or sit on my lap.  She likes me to be constantly within view and if I walk out of view I hear, "mommmmmmyyyyyyyy where arrrrrre yooooouuu".  I know the security is really important for her right now so I try to just stay close or take her with me if I need to leave the room. 

The other 3 kiddos are enjoying having Deena home.  Madi is constantly telling her that she's her best friend.  Deena and Conner really bonded in India and love playing together.  Conner told me that he thought he wanted a brother, but he's glad we adopted Deena and that he has another sister.  He's such a sweet boy and is so gentle and loving with her.  Ramya enjoys playing with her and enjoys having her home but is struggling the most with the change.  In general, I think Ramya just really struggles with her confidence and knowing who she is in this world, but obviously any time we go through change it spirals her again.  I see this divide with Ramya between what she defaults to and what she wants to be.  She wants affection, but pushes us away, sometimes quite literally.  It's like the desire is there but there's a divide and she just can't put that guard down.  She defaults to harsh words and intentionally pushing buttons, but seems like she doesn't want to act like that and knows it's not right.  She can be so very sweet too and I'm thankful for those moments. Any time there's change she stops wanting to eat again and uses food for control, even though she will say she is hungry and she likes the food.  I know she's had a lot of hurt in the past and I pray that one day she will be able to let herself fully feel love and joy; let herself see how special she is.  It breaks my heart that she is only 9 and doesn't have that childhood innocence.  No child should ever have to grow up feeling unloved or unworthy.  It saddens me that there are so many other children out there feeling that way.  For now we have been trying to give her extra love and time and have been talking a lot about how we will always love her, and how our hearts grow bigger to love Deena too, but that it doesn't change how we feel about her.  David took her out shopping with him today and I know she enjoyed her time alone with him.

 

 

 

 

Deena still prefers me but is warming up to David as well.  She asked him to hold her a few times this week and tonight she went over and cuddled with him.  She even gave him a few kisses and told him that she loves him.  It melts my heart to see them together!

 

 

 

Today we went shopping for some new pants for Deena.  I wasn't anticipating her coming home with a cast on, so many of the pants I had do not fit correctly right now.  I had some Gymboree bucks and was able to get her some new size 4T leggings with wider bottoms that will fit over her cast.  She did pretty well at the store and enjoyed running in to Bare Minerals with me because she got to put on some pink lipstick.  She also found a pair of sunglasses at Gymboree and was very excited!

 

 

 

Of course she's mastered the art of the selfie and my phone will never be the same again.  She loves taking pictures of herself!

 







Next week we start homeschooling and I think she will do well.  She is very bright!  This week we did a few science experiments from a kit the kids got as a gift for Christmas and she is enjoying them. 

Please be praying we can get her on our insurance before her first orthopedic surgeon appointment next month.  We need to start PAM infusions with her and she may need some rodding surgeries in her near future as well.  She also handed me a piece of her tooth the other day so I need to get her to the dentist ASAP.  We have some big expenses coming up and it would be really helpful to have her on our insurance!

A big "thank you" to everyone who has been praying for us and following our journey.  It really  means so much! 


 

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

 

A Quick Medical Update

I'm going to start my medical update with... David!  I know I don't talk about him often when I'm talking medical stuff, but David got some news a few weeks ago, and I thought I'd share. 

David's been struggling a lot with having brain fog, being excessively tired, frequent headaches, etc... In addition to some medication changes for his anxiety/depression, we decided to get him allergy tested because I suspected some underlying food sensitivities that are aggravating his system.  We got his allergy tests back right before vacation (FYI- we did IgG and IgE to test for allergies as well as sensitivities) and it turns out he is highly sensitive to eggs and all dairy.  He is also sensitive to broccoli.  The doctor doesn't feel the eggs or broccoli are likely aggravating his system, though he does recommend cutting them out, but dairy can definitely be contributing to these symptoms. 

Some dairy allergies produce a drug-like effect on the central nervous system and lead to brain fog. Food reactions can also trigger irritability and confusion. Some of the most common food allergies are to cow's milk and other dairy products, such as cheese, ice cream and yogurt made with milk. Some people cannot digest or absorb casein, a protein in milk, or lactose, a sugar molecule in milk. This causes an allergic reaction. http://www.livestrong.com/article/333669-foods-that-cause-brain-fog/

 

So, starting today, David joins our growing list of family food allergies.  Eggs, dairy (all types), and broccoli is out for him.  Conner can't have gluten, dairy, or peanuts.  Madi cannot have eggs, gluten, or much dairy, as well as almonds or peanuts.  I suspect Ramya has a dairy sensitivity as well, as I have noticed she gets diarrhea after eating dairy.  I know dairy bothers me too, so at this point, we are all just going to be dairy-free.  For now, that's our list.

 

Right before vacation I turned in stool samples of Ramyas.  The doctor wanted to make sure she didn't have any internal perisites.  I got the test results back today and I'm happy to say, she's parasite free!  Yeah!  I pray I never ever have to collect samples again.  Yuck.

 

We've had a looooooot of shower chair drama, which I will post later.  After a very long wait, I am happy to say the correct chair (part of the long story) should arrive tomorrow.  I can't wait to be able to get the girls in the shower!  YEAH!!!!!  I'll post a picture, as well as the whole long story soon :).

 

Tomorrow I take Ramya down to the general surgeon because we are still trying to figure out if she will need the cecostomy tube some time in the future.  The surgeon wanted to meet with us after we went in to GI.  I think that's our only appointment this week, so that's nice.

 

We've had to make a hard choice to take Ramya's physical therapy down to every-other-week.  Because we have crummy insurance and our PT is out-of-network, we spend $115 a week right now  for her to have physical therapy.  That's on top of the $850 we spend a month on health insurance, and the hundreds we spend on co-pays and deductibles and the such.  We can't make it on David's base salaray, and so are cutting a lot to try and stay above water (he won't be getting bonuses for quite some time due to some crazy things going on that are just way to complicated to type out).  I know that our troubles are so minor compaired to so many others, and that we are very spoiled, and for that I am thankful, but it does feel kinda bleh right now.   We're praying that Ramya will get on long-term care soon.  We can apply for her again in October after our re-adoption date.  That's when she will officially have her full name and official US paperwork.  They told us she won't qualify, but please help us pray for a miracle!  Though we would still have the $850 a month, it would help so much with everything else.  We know we will be fine and we will get through this time, we just have to cut down, and sadly, this is part of what we need to do.  I try to work with her a lot on my own, and I know she will continue to thrive despite our cut-back. 

 

Thanks for walking our journey with us and for always keeping us in your prayers.  We appreciate each and every one of you!

 

 

Medical Bills, Medical Bills, Where Art Thou Medical Bills?

Today we had a very important appointment, though not a medical one.  Today I took Ramya to have a casting of her handprint made.  I have the kiddos foot prints and pictures framed on my wall, and I want somethign special for Ramya too.  When Ramya looks around our house, she sees Conner and Madi, but she is not in any the pictures.  We have her picture on our fridge, but that's it.  I want her to start seeing where she fits in (right in the middle of our crazy family, forever!!) and I think it's really important, so we made this a priority.  We are also getting family pictures next Thursday (THANK YOU Michelle!!) from a wonderful friend who is taking them as a gift for our family.  After that I'm changing out all the photos so that our whole family is in them.

Tomorrow the real fun starts.  Although she's been to the pediatrician, he didn't really do much in terms of testing and such, so it was a fast in and fast out kind of appointment.  Tomorrow is a big day.  First she has an ultrasound of her urinary "parts", next an appointment with Dr. Zuniga, our urologist, and after that a CT scan and set of x-rays to check her shunt.  Whew!  We have a $2,500 insurance deductible, and we will hit it ALL tomorrow with these appointments.  Lucky us!  I am very happy, though, that we are hitting them so early in the year, so that we at least have the rest of the year with owing 20% and co-pays, versus the full amount.  Phoenix Children's Hospital has been calling me frantically to set up payment.  I had to pay half of the CT scan and x-rays upfront (so today about $1,200 went on my credit card), then I will make payments on the other half.  Next, of course, we get to pay a chunk of the ultrasound and our doctor visit amount. 

I'm going to insurance (hopefully tomorrow... it's on my very long list of to-do's) and try to see if we pay more monthly (currently we pay about $720 a month), if we would pay less on the visits, and try to balance out what would make more sense for our family.  I am also trying to work on getting Ramya on long-term care.  Everyone keeps telling me she won't qualify, but I am trying anyway!  Join me in praying that she can get on, as this would be a HUGE help!

We knew all these bills were coming and tried to start saving for them, so none of this surprises me.  Even though, when I think about the equipment she needs, the testing, the visits, the surgery she will most likely need (doctor said her bowel and bladder surgery need fixing, so we'll see what the urologist says), my head starts spinning.  I know God has a way planned for this all to get handled, though, so I'm just taking it one day at a time and praying for the best!

No matter what happens, though, SHE IS WORTH IT! 

And on that note, Ramya turns 6 tomorrow!  I am SO thankful we get to have her home to celebrate with her!  I got her a little birthday outfit that came in the mail today and she is so excited!  I can't wait to post pictures!


 

I may need an attitude adjustment

Lately I haven't been in the best frame of mind. I am so frustrated with the system and all I want to do is scream and throw something against the wall (though I've yet to do either, so no worries). I previously posted about some money that was supposed to be reimbursed to us that will go toward a playground for Madi. After another round of calls and messages, and no answers or replies of course, Tami put me in touch with someone who advocates for families and helps resolve problems they are having. I finally found out that the paperwork I resubmitted must be lost in the mail because they are still not showing they got it. I am not sure why they could not just tell me that, but at least I finally know. So today I spent about 1 hour getting everything in order again to once again resubmit it. I did not get to finish and could not sleep until it was done and I could once again see the office floor, so I spent another hour and a half or so copying, compiling, organizing, and writing letters. This, of course, is not the only issue we are having. We still do not have her walker, which came in over a month ago and we should already have, but they are having a hard time getting authorization from her secondary insurance. We do not have her wheelchair or bath chair either. I have left multiple messages to see where these items are and when we should expect to get them, and no one has returned my calls. I was dealing with trying to get Conner in speech therapy which meant calling the doctor to get the referrals in the right place, talking to companies, and trying to figure out the cheapest way to get him a hearing test (which involved calls to the hospital, a few offices, and insurance). Then there is Madi's catheters. Don't get me started on that one. Apparently the company we were going through (edgepark) does not take her secondary insurance, only her primary. We found that one out after a lovely bill over $160 for a month worth of caths. The place her secondary referred me to only takes her secondary, not her primary, and the place that company referred me to only takes her primary. Confused yet? So am I. So with one box of caths left, I still have 0 places to get the caths from. I've called her primary insurance, her secondary insurance, and her urologists office, and no one seems to know where we can go. Nice. Then there is the neurosurgeon appointment I've been trying to make for a little over a month. There is always something else they need, someone else they need to talk to, someone else I have to call. Madi is due for a shunt series and CAT scan, but because her neurosurgeon changed offices, we have to start from scratch and it's taking forever. Then you throw in to the mix that Conner just started preschool 2 days a week, which I volunteer at least 2-3 times a month, I started homeschooling the kiddos the other 3 days (nothing big but it still requires prepping and planning), Madi is in therapy 3 times a week, Conner finally got tested to see if he qualifies for speech therapy (he does) and will now be going twice a week, and everything else that goes along with life. Needless to say, having to spend my Friday night dealing with insurance was the icing on the cake.

I am grateful we are getting the refund for part of the medical bills that we paid early this year. When we paid those bills, we were not expecting to get reimbursed. I am thankful they backdated her secondary insurance so these bills would be covered.  I still find myself getting very frustrated, though.  Madi is such an amazing blessing and makes it all worth while, but I really wish all of this extra 'fun' stuff would just disappear. I don't think it's fair that families have to deal with so much junk when they have so much else to do and think about. I know seeing Madi and Conner play on a playground, together, because it fits both their needs, will make it all worth while. I know the freedom and thrill Madi gets from being able to play independently with the other kids, high up in the air where she normally cannot get, will make me forget this mess in a second. I know all of this, but I still wish I got to spend my time on other things. I'd like to use that pedicure gift certificate David got me for Christmas in 2008 and I'd like to use the cooking class giftcard he got me too. I would like to wake up refreshed in the morning. I would like to spend my time with my family, instead of on the phone. It is times like these, though, that I remind myself that God tells us his presence is with us and He will give us rest.  I know it will all work out in the end and it will be worth the hassle.  When I look at Madi's sweet face I remind myself of all I have to be thankful for. Taking care of insurance may not be fun, but it is part of taking care of Madi, and I still would not trade it for the world.

So THAT'S where our money has gone....

I try to post about what it costs to raise a child with special needs every once and awhile.  I do not do this to get sympathy, but to raise awareness.  I really do not think people understand how much it costs.  As we speak, our state is in a healthcare crisis.  Budgets are getting cut left and right.  Now they are looking to cut KidsCare and have already made huge cuts to the services offered through the Department of Developmental Disabilities.  Did you know (taken from an e-mail put out by Raising Arizona Special Kids)...

Since December 1st, state budget cuts caused 4,091 children with serious health conditions to be dropped from Children's Rehabilitative Services (CRS).
For most, this was their primary healthcare insurance.


Children with CRS conditions are generally not covered under most private health insurance plans.
Only 234 have qualified for the AHCCCS program.


If KidsCare coverage ends, another 900 children with special health conditions will be dropped from CRS.


This is their only healthcare insurance.


We do not qualify for AHCCCS, which also booted us out of CRS, so I feel for these families.  So far this year, we have spent $1538.04 on our private health insurance and $2840.09 on other medical expenses, for a grand total of $4,378.13.  This is actually a low number, since I know I paid cash for a few appointments (at least $200 worth) and wrote checks for quite a few before switching to credit card, and it does not include Madi's Amtryke, since we are using a generous donation from her great-Aunt and her Amazon.com associates money for that.  I know there are MANY families out there who have it worse off than we do.  I am very thankful we are able to pay her bills, even if it means we live a bit differently, and that we have insurance.  We are also very lucky that we have not had any big hospital stays this year, like we did last, that would have increased this number exponentially.  I would spend a million times that on her, because she is worth every penny.  My point, though, is this....  If you ever get a chance to have your voice heard, please stand up for our children.

"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."  Cardinal Roger Mahony

Would anyone like to see.....

How many insurance claims we have had so far on Madi since her birth?  Let's just say, our insurance company probably doesn't love us too much (we have private insurance we pay for ourselves).  Yes, this stack is JUST Madi, and some claims have multiple dates/claims on one page, or it would be bigger.  Thank God we have insurance, huh?!?!?

And, just because it's cute (even though it's not related), here is a picture of Madi in her very first pigtails :)

I am still in the editing process, but...

I am composing a letter to send to our wonderful legislators about the proposed budget cuts for early intervention (basically physical therapy, occupational therapy, etc...).  They initially tried to take away all services our special little kiddos receive, but that will illegal and didn't fly.  Now, in addition to major budget cuts, they are saying they may have parents pay a percentage of it.  I know it doesn't seem like much, but when you already pay for private insurance and the millions of other little things that go along with having a child with special needs, it adds up very quickly!  For us, we pay $450 a month for insurance.  Our deductible is $2,500 a year and our co-pay is $35.00.  Madi receives physical therapy and has a developmental specialist for an hour a week.  She also will be starting occupational therapy.  Currently, the Department of Developmental Disabilities pays for the amount not covered until our deductible is met and our co-pay.  I know we are lucky to have the support, but couldn't give Madi what she needs without it.  We would be paying the $450 a month for insurance and $105 a week for her services, and that's after we met the $2,500 deductible.  In the near future, when Madi needs walkers, wheelchairs, etc..., we will also be paying for that.  Then, if she ever needs to be cathed, there are those supplies, the co-pays on her medicines, adaptive things she will need for our home, gas to and from appointments, and many more expenses.  Although she is worth EVERY penny, those pennies add up quickly!  The legislators are saying they are not hearing from parents who are unhappy about the changes.  I think they forget that our time is limited!  So, pardon my long story and my spelling errors, but here is a draft of the letter I am writing.  I will be sending it to everyone I can.  I hope it inspires others out there to write a letter too.  Let your voice be heard!

Dear ,

 

I am writing to you concerning the proposed budget cuts for early intervention programs in Arizona.  I am a mother of two and my youngest, Madilynn, has spina bifida, hydrocephalus, and a Chiari II malformation.  She is currently five months old and receives physical therapy, services from a developmental specialist, and is being evaluated for occupational therapy.  Although we pay for private insurance, we also utilize The Department of Developmental Disabilities (DDD) and The Children’s Rehabilitative Services (CRS). These services are absolutely crucial to her physical, mental, and long-term wellbeing.

 

I am an educated individual with a Master’s Degree in Elementary Education, a reading endorsement, and an SEI endorsement.  I have even taken a few special education courses at the college level and still do not have enough knowledge of how to most effectively work with Madilynn and help her live up to her full potential.  It honestly takes the efforts of trained, knowledgeable, and caring individuals, such as the ones that work with Madi, to give her the assistance she needs.  The specialists have given me ways to work with her and it is because of them that Madi is doing as well as she is.  We have seen her make tremendous strides in just the few months she has had assistance.  Unfortunately, though, when Madi meets her current goals, I will once again be at a loss of how to help her.  Both Madilynn and I need the help and support of her therapists on a regular basis. 

 

As you and I both know, money is short and changes must be made.  I am thankful that federal stimulus money is available, but know that more needs to be done.  I am asking that you will seriously consider taking money from other places so that our children can still strive and receive the help they so desperately need.  For example, instead of paying for elective epidurals for women receiving ACHHS, you can pay for something that, in my opinion, is absolutely not elective-- our children’s futures.  If Madilynn does not receive the help she needs now, her chances of walking are very slim,.  The cost in the long run will be much greater not only for us, but also for the State.  Madi is at her most critical point of development, and needs immediate, ongoing assistance.  I have attached a copy of the appeal I sent to DDD and ask that you read that for more information about that long-term costs that will arise if early intervention budgets are cut.  You can also read more about Madilynn and the amazing little gift she is by visiting www.missmadisjourney.blogspot.com.  When you make decisions regarding budget cuts, please remember my daughter and the disservice you will be doing to her, and others like her, by taking away even 10% of the budget.  Our children need you.

 

Sincerely,

 

 

 

Jamie Veprek