Thursday, September 9, 2010

On our way to Philly, PA

It was confirmed today that Marcus WILL be seen next month in Philly, PA. We have waited for months to get this far. Let me start a few months back. Marcus turned 4 on March 1st. Time for his well child visit & routine yearly blood work. No problem. Our wonderful pediatrician reminded me that Marcus needed to be tested for AAI/AOI (unstable neck - like a bobble head). This condition is not uncommon for children with Ds & something that we needed to test for at the age of 4. We had Macey tested last year at Saints & it was just awful. First of all she was already 4 when we came home so she was tested pretty quickly, along with her routine work up as well. The pitiful people did not know what they where testing for. It took FOREVER. It did not help that a man was the one holding her still, as was I. That's another story. Anyway, we where going to another facility. One that works with children would be nice. We made the apt. & where literally in & out in an hour. From the time we dropped the car off with valet to the time we picked it up. Score! The x-ray results concluded that we needed to follow up with a neurosurgeon. An appointment was made quickly and an MRI done as well, sedated I might add. With those results we met the ONLY neurosurgeon here in OKC that Marcus would qualify seeing (because of his condition). I took my dear friend Alyson with me to hear all the information I was about to receive. I was told that Marcus needed to be restricted from hippo therapy (horse back riding), moon bounces & trampolines. Also, to let his restrictions be known to teachers. therapists, care givers, etc. Sounded serious to me (us). I wondered if he would need surgery. If he needed surgery, when would it be done? What was the surgery like, the recovery? I was led to believe that if he needed surgery it could be done in a short amount of time, like w/in a couple of weeks. She wanted to consult with another doctor before making the final decision. We waited ALL summer long. No decision one way or the other was made. She told our pediatrician we could contact the doctor she was trained under for his opinion. He is in Iowa. That was it. So as a mom I knew that this could not be left undone. Our pediatrician agreed. She said, "They want you to look for this, then when you find it they don't do anything." I remember visiting with one of my "online" friends. A friend I "met" through the wonderful world of adoption through Reece's Rainbow. Her daughter had this surgery & they too had to go out of their state to receive treatment. She was extremely pleased with the doctor, surgery, staff, recovery, etc. I called Renee' with what seemed like a lot of questions. She was kind & patient with me as I drilled her. She gave me all the information I thought I needed so I made the call. I thought I was calling the office number that evening to leave a message for them to call me the next business day. No, I actually called the doctor himself. He answered his phone, answered my questions & is willing to see Marcus. I was stunned. What an answer to prayer. Why? Because we have met our family deductible sometime this year, have nationwide coverage & can go anywhere in network with BC/BS. How do you find THE right doctor (neurosurgeon) for your child when you can pick from the best of the best? The Lord knew I needed His help. Renee' having a great experience & the doctor answering the phone & answering my many questions personally was enough for me to know God was in control. The doctor agreed to see Marcus. I needed to follow up with the care coordinator who would be in after the Labor Day holiday. I worked on our application this weekend. When seeing a doctor at any Shiner's hospital you have to apply to be seen. There are many Shiner hospital's across our country but only 3 that specialize in the spine. One in Sacramento, Chicago & Philly. This doctor is in Philly. The care coordinator called 8:30 Tuesday morning, after the holiday. She took the application over the phone in just a few minutes. I spent WAY to much time on it over the weekend. :) It helped that I had already talked to the surgeon, had a personal reference & she put in our application electronically as we spoke. The doctor would be in Thursday (today) to determine when he could see Marcus. She called again early, this time with an appointment. The first one he had available. He only sees new patients 1x a week, on Thursdays. So in 4 weeks we will be in Philly being seen for Marcus' condition. Please pray for the details of travel, lodging & family life to be easiest on everyone. We have NEVER done anything like this before. Our kids are healthy & go for their well child visits each year. This is ALL new to us. God is in control & I am not. I will update you with details as our trip gets closer. Please begin praying for the doctor, for wisdom in his decision making. I can't even express to you what it will be like if Marcus does indeed need surgery. God knows the answer to that already. I have to trust & obey. I am doing what needs to be done & that's an apt. with a neurosurgeon for my baby in Philly, PA. Who knows maybe they'll serve a cheese steak in the hospital cafeteria. One could hope!
Thank You for thinking of our family & when you do Thank You for praying for us too.


Jennifer C. Roberts said...

So...this is what we have been wating for all these months. The time has come to begin this journey and God is laying it all out right in front of you. Scarey doesn't even begin to sum it up, but have faith and know that God is in control, just like he always has been, and just roll with it! I will be praying for you all and please know that I am always here to listen, talk, help out in any way that I can (wish I could go with you!) know this! It's going to be OK!!! Love to all...Auntie Jennifer loves Marcus!!!

the Gower Fam said...

Praying for you all and your journey ahead. That is such a wonderful blessing the way everything has been laid out for you and from that alone you can tell that is truly where God is leading. Thank you for sharing! We will be in prayer for your family!

Tiffany said...

Thank you Meghan for taking the time to update us all on Marcus condition on your blog! I promise to begin praying right now for the doctors wisdom and also for your travel plans and all that goes along with that.

Charissa said...

I've been wondering! Thank you for the update. Marcus will be in our prayers.

Mommy to those Special Ks said...

We will be praying!!!! You will love love love Dr. Samdani! He is there for the whole family, not JUST Marcus! Call me ANY time! :)

Tracey S. said...

I love Shriners Philadelphia. I spent a significant amount of time there as an inpatient and hands down Dr. Samdani's patients had the highest quality of care and smoothest outcomes among the primary spine surgeons. I have traveled to Philly from Ohio around 25 times, I have lots of resources to make the trip to Philly cheaper. Where to get plane tickets for free (bc you're traveling for medical reasons), a rental car deal, where to stay ect ect. Our one trip we flew free, got a good deal on a rental car and only paid $45 for lodging for 3 nights. Please send me an email tracey @ if you'd like this info.