Wednesday, September 29, 2010

Doing the Dance

Today we can all do the "Celebrating Zero Dance"!! Mason got a big fat wonderful "0" on Monday's biopsy. That would be his third zero in a row!! Hooray, hooray!! And this biopsy was the best he's had yet. Even with his other zeros he still showed small suspicion of AMR (antibody mediated rejection), but not this time. There was absolutely no AMR suspicion at all! This is so GREAT.

After Dr. E (Mason's Dr here at Primary's) spoke with Dr B at Stanford we were also given the best news yet......Mason can come down one whole step on the Prednisone (steroid) weaning scale and also down on his Cyclosporine a little. Hopefully this will help him feel a little less 'steroid induced grumpy'!!!

We love good news!!! Do a little dance for Miracle Mason today to help us celebrate!!

"There are two ways to live your life-one is though nothing is a miracle, the other is though everything is a miracle." ~Albert Enstein

Monday, September 27, 2010

Change of Plans

As we await the survival of our most recent speed bump (finding medical insurance for Mason), we had to postpone our trip to Stanford. After spending many hours on the phone with our financial social workers from Lucille Packard and Primary Children's, with no news from medicaid or SSI yet, and putting my math skills to work........ I decided to wait until Mason is covered to go back to Stanford/ Lucille Packard for Mason's "6 month" check up.

Mason's transplant team at Stanford said it was okay to wait to come there, but that he still needed to have this month's IVIG treatment and biopsy whether it was there or at Primary's. Either way would cost us out of our own pocket, but the lesser would be Primary Children's. Amazingly, the more medical debt you have the more the hospital can help you out financially. Stanford has already discounted us a lot from March through June, but now it is Primary's turn to discount our bills!!!

Thus, here I am today with Mason at Primary's. He had his BIOPSY #9 this morning and he is now recovering and waiting for his echo. Please pray with us this day that it will be a 'good news' biopsy. Last Thursday we were also up here for his monthly IVIG treatment. It went well, but he was not the happiest little guy to spend a whole day in the hospital once again. Although, Mason is the bravest little boy I know!!!

(Mason is waiting at 630 am for his biopsy.)

As of now, we are hoping to have insurance coverage for Mason by sometime in October. We have looked into all our different options and are praying what we've chosen will work out. And if all goes well, we plan to visit Stanford the week of October 23.

I will post tomorrow w/ BIOPSY #9 results.

Thank you for all your support and also for sharing w/ me your different ideas about insurance options and transplant foundations. It has really helped!!!

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)

Saturday, September 4, 2010

Yesterday and Today

Yesterday, September 3, marks one year from the devastating news that literally broke my heart. Mason was diagnosed with severe pulmonary vein stenosis during his pre-transplant heart catheter. That day after his heart catheter we were supposed to list him for a heart transplant. But, instead we were given the news that with the stenosis identified during the catheter he would not be able to receive a heart transplant. Mason, being in severe heart failure with a hypolpastic heart, was then given only several months to live. To read more see this post and this post.

But with a lot of HOPE, FAITH, PRAYER, and the endurance of a MOTHER'S LOVE......
I did not take "NO" for an answer! I spent many days crying, many hours on my knees, and
a lot of time researching on the Internet.

And then on April 4 2010 (read this post)........
exactly 5 months ago today Mason was given a new chance at life! A true miracle blessed our family on Easter Sunday thanks to another family who gave to us during their time of mourning and loss. There have been numerous speed bumps, twists and turns during these last 5 months, but definitely better than what was foreseen a year ago yesterday! I feel so very blessed from my Father above. He never left me alone. He has held my hand through every moment of Mason's journey.

"If you are helpless, He is not. If you are lost, He is not. If you don't know what to do next, He knows. It would take a miracle, you say? Well, if it takes a miracle, why not?"

~President Boyd K. Packer~

Have a great Labor day weekend!! I know mine will be better than last year's! That is for certain!