Saturday, September 18, 2010

Busy Days

Time flies! I'm sorry for the 2 week gap from my last post. My days have been over before I know it lately. But, please always remember if there is anything major going on in Miracle Mason's journey I will definitely post to keep you updated. No news is good news!!

That being said, Mason is doing great! It's a "one day at a time" life for us. Some days are better than others. But, besides some fine tuning with blood pressure meds (Mason was still getting BP's too high in the middle of the nights...... until 3 nights ago), which I hope we got it right this time, and his usual 'not wanting to sleep very long at night' issue, Mason has had 2 pretty smooth weeks. His last 2 Thursday cardiology clinics have brought us good news of BEAUTIFUL ECHOS! Always amazingly wonderful words to hear with all Mason has been through!

Now that Mason has a healthy heart and a lot more strength than before transplant, I've started having the Kids On The Move (early intervention) therapist come to our house to work w/ Mason. Although he only qualifies for the program until he turns 3 on November 30, I decided it was time to get him walking and eating. So with whatever new ideas they can give me over the next 2 1/2 months will hopefully help.

Poor little Mason is so so very shy now, that he wants nothing to do with them when they come.....but I know how wonderful their program is because they helped me with my Ammon (now 5 1/2) for 2+ years. Ammon has been globally developmentally delayed since birth (you can't really tell now by just seeing him, although he is still behind and attends a special needs kindergarten). Kids On The Move, along with the special needs school district preschool he attended after, helped him progress by leaps and bounds! If at least, I know they'll teach me some new techniques for helping Mason meet his next mile stones.....taking the time out of our crazy weeks to visit with them will be worth it.

Where are we at with health insurance coverage for Mason? No luck so far!! I have received many e-mails and comments with great ideas from Mason's followers, thank you! I have looked into to all of of your ideas and then some. Disability Medicaid and SSI have not given us a final answer yet, but I was told that if Mason qualifies at all it will probably be just "Institutional Medicaid". This is coverage for when someone is in the hospital for more than 30 consecutive days. If we do get this it will help us pay off some of our unpaid bills from April and May, BUT THAT IS IT!! Okay, I will be very grateful to get that help, because our outstanding bills at Stanford for those 2 months are a whopping $133,ooo, (Yes, really!! That was w/ insurance coverage!) but what about the rest??? And what about now?

We are receiving bills from June and July that the insurance received after August 11 when he'd already met his life time max, which they won't pay at all. Then, Mason's 10 day stay at Primary's in August (which included 48+ hours in the CVICU, a biopsy, and an IVIG treatment....all being very high dollar) which was uncovered!!! All I have to say is....ITS NOT RIGHT! But we move forward caring for our Mason, because that is what's RIGHT, hoping and praying with faith that somehow it will all work out!

Mason and I are supposed to fly to Stanford on September 28. Mason is scheduled for his 6 month biopsy and heart cath on Sept 29 (can you believe on October 4th it will be his 6 month angel heart anniversary?), as well as his monthly IVIG treatment. BUT, he's not covered right now!!! What to do??! Stanford's transplant team says it is very important that he come and they do not want to put it off. Yikes! What a stressful decision!!!

In the mean time, one of Mason's faithful followers has donated sky miles to help get us there! Thank you, thank you Mary! Whether we go September 28, or are able to put it off 'till sometime in October (by then hopefully Mason will have some kind of Insurance. Presently I'm applying to get him on HIPofUTAH specifically for people in Mason's situation. It has high premiums and deductibles, but better than nothing!!!), we do have to go. We are in need of some more miles to get us both there and anyone have extra??? This will help lessen some of our financial medical bill burdens right now!

One major thing I am very thankful for are Mason's fundraisers and also those persons who unable to attend still donated through pay pal on the blog. With out insurance Mason's price of medications each month have at least tripled. Just yesterday I picked up one of his medications
for which I paid $725! And that was only one of his 12 medications, yes one of the most expensive, but still I couldn't do this without Mason's Medical Fund you all have so kindly donated to and supported! THANK YOU!

I need to go now and get everybody up and ready for Preston and Braiden's baseball games. If they will get up that is! Kaitlin turned 12 on Thursday and we let her have a big outdoor movie birthday party last night that went pretty late! (And I mean big.......there were 71 6th, 7th,&8th graders her ) Call me crazy, but sometimes I do things out of maternal guilt because Mason takes up so much of my time and attention! "Happy Birthday to my wonderful daughter , Kailtin! I Love you!"

******And just one more thing, The 2nd Annual Miracle Mason Monster Golf tournament will be on October 16, 2010. Mark your calendars and I will post more details soon.*******

I leave you today with some special words I heard in a song at church a few weeks ago, which have helped me get through some of my stressful days lately:

"The blessings of this day
Will linger in our thankful hearts,
And silently we pray
For courage to accept thy will,
To listen and obey.
We love thee, Lord; our hearts are full.
We’ll walk thy chosen way."
(L .Tom Perry)


The Simmons Family said...

Summer... I wish there was something we could do to help. I can't imagine the financial burden you feel. I was complaining about having to pay extra for an oxygen concentrator. Lame.

I do believe it will all work out. It has to. I'm praying that Mason will get some type of coverage soon. My heart goes out to you!

Betsy, short for Elizabeth, formally known as Esther said...

Health Care Reform will help you. But not until January 1, 2011. One of the provisions is the removal of the lifetime max AND removing the pre-existing limitation for children. I know it won't help today, but it will be good next year! p.s. I don't know the specifics of your health insurance, but I would check it out with your plan administrator, i.e. your husband's employer

Christina said...

Here's a super crazy idea, maybe too crazy, but is your husband too old to join the National Guard? Tricare covers everything. You would have small copays and a premium each month, around 350 dollars for a family. Just a crazy idea. It sure helped us pay for our million dollar baby.

Mindi D said...

Seriously this makes me soooo angry. Lifetime max?? Who the heck ever came up with that idea!?! I hope he qualifies for something, he has to, it's just not right!! Good luck, and i'm so happy all is well with the little guy :)

Tamara ViAnn said...

So more crazy ideas from someone you've never met...

I don't even know what your husband does for a living but could he find employment in the same field with a different employer? Mason's lifetime max wouldn't follow him to the next insurance company right? Or does it? Whoever came up with the idea of a lifetime max for children was an idiot.

Another idea I had. Trust me, I'm the last person on earth to encourage a SAHM to go back to work especially when one's kids are young, and since your essentially Masons full time nurse. But maybe you could find a part time/full time job that offers benefits? Even if the income from your job only covered the healthcare and the nanny you'd need in your absence it could be a short term plan until universal healthcare kicks in. I just really worry for you that spending too much time trying to find coverage for him may backfire and you'll spend years, possibly even go into bankruptcy trying to financially recuperate. It just seems to me like getting him on a different group insurance plan is the way to go.

I'm sure you've explored every idea under the sun though, I hope my post doesn't come across wrong. I know you are exploring everything you can think of! I really hope your able to able to get some direction and answers soon. Hang in there!!!

Anonymous said...

Have you checked out Angel Flights? They fly people for free to medical appointments. My friend has used it to fly from NY to MN to the Mayo Clinic for her heart. The scheduling has to be a bit more open than booking a flight but I have heard nothing but wonderful things about the pilots that volunteer their time to fly patients in a small jet to their appointments. Just a thought I had when I read your post. I don't fly so don't have any miles... just road miles but they won't help you.
Glad to hear Mason is oing so well... I hope something comes through for insurance for him... I can't even imagine!!

PS... if you want more information on the Angel Flights you can email me and I will put you in touch with my friend...

madelyn said...

My heart is so broken for you right now. Just last night my husband had the opportunity to speak at a fundraiser for a new charity that will ultimately support heart families- explaining the financial burdens we all face, he specifically mentioned Mason as one example of a family we "knew" who faced significant medical costs during their yet-early heart journey.

I will pray for God to provide (knowing, somehow, that He will) and asking Him to comfort you and remove your worries. You have provided Mason with this awesome second chance at life and little by little, day by day, things will work out.

You are always in our prayers.

Debra said...

Hi, I found your blog through another blog, and have been following and praying for your family for awhile. I've never posted, but I heard this story on my local news, and found this article (link at the end)according to them, the end to lifetime limits starts now. I heard that and immediately thought of you!

Kenny and Melissa Fraure said...

I know someone mentioned angel flights but there is another one called miracle flights that could fly Mason for free and a parent for $50. You can apply online and get a commercial airline tickets in10 days and once you are approved your application is good for 6 months and I do not think there is a cap on how many times you can use the program. Just google miracle flights for kids. I wish you and your little miracle the best and you are always in my family's prayers.

Tamara ViAnn said...

Summer, I just saw this today.

Nikki said...

I emailed you but I'm not sure if you got it. I have a friend who wants to donate some miles for you. I'm not sure how many there are but she needs to know how to get in touch with you!

Email me at when/if you read this!

Traci Bulkley said...

Crazy hard stuff. I wish I had more ideas for health insurance for you. I really hope something works out soon. Oh, I just thought of something. Check out this link I haven't read through the whole thing, but maybe you would qualify for this.

I love the words of the song you posted. Those words got me through Maddox's days in the hospital.