Monday, May 24, 2010

3's

They say bad things usually come in 3's, but today for us it was 3 WONDERFUL things!! After a terrifying situation with Micah this weekend we were ready for some good news. Long story short... Micah woke up on Sunday at 3am having trouble breathing. After an ambulance trip to the ER, some oxygen, two breathing treatments and some steroids, he is doing beautifully.

Was it not just Friday that I was told to wait 10-14 days to hear anything from Dr. Carson?? Would you believe that Joyce, the Medical Concierge, called me this morning to tell me that Dr. Carson's office had called her with an appointment for Madison?? Yup....her appointment is scheduled for June 18 at 3:o0pm. I was overwhelmed with JOY! I immediately called Steve and we agreed that it will just be Madison and I travelling for this first appointment. So I go check out Southwest.com to see what we'd be looking at as far as travel expenses. Got a good idea on that, then I wanted to check hotels in the area. Johns Hopkins has a Patient Information page that I thought I would check. First I saw the information on the Ronald McDonald House, so I called and got that set up. $15/night for our own room, two beds, meals etc. Then I noticed some information that said Southwest Airlines Medical Transportation Grant Program. It doesn't give much info other than it provides a one-time, round trip airline transportation and their social workers do an eligibility screening. So again, I called. Spoke to a very nice lady who asked a few questions then told me a social worker would be calling to determine eligibility. 10 minutes later I got that call, and basically the end of the conversation was, " Mrs. Tarbell, expect something in the mail in 7-10 days containing vouchers for 2 round trip tickets for Southwest Airlines!!"

We cannot express how truly blessed we have been today! Not one, not two, but THREE times. What an amazing God we have. This just proves that we must trust that He will take care of our every need. He has the perfect plan.

Unfortunately we have yet to receive the approval for this under our current insurance plan, but there is a way around it. It could possibly end up costing us, but any amount is well worth it. I will keep updating as I know more. Thank you for sharing in our JOY and for your never ending thoughts and prayers.

xoxoxoxo

Friday, May 21, 2010

Moving Along

Just got word today that Madison's medical records were received by Johns Hopkins and they have already been faxed over to Dr. Carson's office. Our extremely kind Medical Concierge, Joyce, said we should hear from his office in the next 10-14 days. Now if we can just get Tricare to approve the second opinion. They are giving us a hard time because Dr. Carson is in the Tricare North region and we live in the South region. He accepts Tricare, so who cares what region he is in?? They make things so difficult! Maddie's pediatrician has been working on getting it all worked out. It is possible, we just have to do it the Tricare way! Thank you to everyone that has offered to help out. All of your kind words and offers are greatly appreciated.

Lots of Love......

Friday, May 14, 2010

Not So Bad

So, today I went to Wilford Hall to tackle getting all of Madison's records and films. IT WAS SUPER EASY!! No waiting for them to be sent. Went to Patient Records and they just printed them off right there! I then made it to Radiology and got 2 DVDs made. Waiting for those took the longest. A whoppin' 30 minutes!! The best part of the day was getting to have lunch in the Cafeteria with some fun friends. It is always delicious and you can't beat lunch for $2.25. When I got home I called the Neurosurgeon's office to request a copy of the notes from her appointment. They were so kind about it and will be sending them out today. So, I should have everything ready to be sent to Maryland by Monday. I will leave you with a little sunshine on this nasty, rainy day (well if you are in San Antonio)!


Tuesday, May 11, 2010

Change

There is bound to be change in our lives, and of course we all like the "good" change, but sometimes we must accept the bad and remember that in the end we will have grown stronger. Madison's Neurosurgery appointment that was scheduled for today has been changed to May 27. This change is not good for my nerves, but there is a reason for everything. Dr. Mancuso had to squeeze in a surgery for a little boy or girl that needed her. Needed her to help heal them and if that means changing Madison's appointment that of course is what we would want.

Good things are happening around here!!! It is with much thought, prayer and consideration that we have decided to get a second opinion for Madison. We absolutely, 100% trust Dr. Mancuso's opinion, but for the justice of our daughter we want to be certain that the decision we have to make is correct. After alot of research on my part we have decided to try and go see Dr. Ben Carson at Johns Hopkins. I say try because we are still trying to work out the fine print. Insurance, getting copies of records etc....

At a young age my aunt gave me a copy of the book, Gifted Hands: The Ben Carson Story. An inner-city kid that struggled with anger amongst many other challenges and rose to be the youngest ever Director of a medical department at Johns Hopkins. At age 33, Dr. Ben Carson became the Director of Pediatric Neurosurgery. I was so drawn to this book but didn't know why. I didn't want to be a Neurosurgeon. Sure I love medical stuff, and will one day be a nurse, but not a Neurosurgeon. So why did I feel such a connection at the young age of 13? Somethings we never know, but now; almost 20 years later, I know why God put that on my heart. He knew one day I might need Dr. Ben Carson. Even if it doesn't work out that we get to see him personally, I know we will be guided in the right direction and it will be God's will.

Please pray that this process goes smoothly for us. I will be doing alot of running around getting medical records etc. Also, if this gets approved that means that we will have to travel to Maryland. The travel is not something that Tricare will pay for so we might being eating Ramen Noodles for a bit!! All kidding aside; I know.....God will provide!!

Wednesday, May 5, 2010

Good News!

I got the report back from Madison's latest MRI and from what I can interpret, it looks like good news! No damage has been caused to her spine from the Chiari. We will meet with the Neurosurgeon on May 11 to get more information on her surgery and possibly a date. I'm thinking a doctor's appointment is in the works for me as my nerves are not doing so well, but keeping my chin up!! Thanks for all the thoughts and prayers.