Wednesday, June 23, 2010


Disclaimer: This story documents our trip.
Please beware as there are alot of pictures!
Thursday, Madison and I arrived in Baltimore about noon-ish. We took the shuttle to get the rental car and made our way to the Ronald McDonald House. That is when I started to get emotional. It was such a beautiful brick building right in the heart of downtown Baltimore. What an AMAZING charity.

From the very minute we walked in the door until the day we left, we were taken care of. Every family had a different story. Some were from other countries. Some were there for 3 days and some were there for 3 months. It always seems like you have it bad, but then you meet someone else who is worse off. After settling in our room, we made our way back to the airport to get Stephanie. It was so nice to see a familiar face. After we unpacked our stuff we took a little walk to the World Famous Lexington Market. We even scored some Tasty Cakes. The walk and the market were a little scary. We weren't sure if it was good or bad that there was a police officer standing on every corner. Either way, we made it back to the Ronald McDonald House (RMH) safely. Every night a company, business or family, volunteers to make a homemade meal for the families staying at the RMH. I have volunteered to cook and serve meals several times, but this was the first time I was on the other side of that kitchen. It was a very humble feeling. The one meal we ate there was hosted by a local church. They were very kind, but not very chatty. I think they didn't know what to say; as I have felt that way many times. No matter what, they shared the love of Jesus, and I am forever grateful.

Thursday, our first night there; we met up with an old friend, Mark, that we were stationed with in San Diego. We even got to meet his new wife! They came and picked us up and treated all three of us to dinner at a local Mexican Restaurant and Cold Stone for dessert. It was so nice to just relax and catch up with old and new friends. Thank you Mark and Leanna!

Madison and Aunt Nini aka Stephanie

Leanna and Mark (he hates taking pictures, can you tell?)

Friday morning Steve's mom, brother, sister, and our niece drove about an hour for a visit. We drove to the Inner Harbor and Steve's mom treated us all to lunch at The Hard Rock Cafe. The visit was very short, but sweet.

Donnie, Michelle, Becky, Daijsha, Me, Madison

Madison loved seeing her Aunt Michelle, Uncle Donnie, Grandma Becky and Cousin Daijsha. It was Maddie's very fist time meeting Daijsha and they got along GREAT!

Daijsha and Maddie having FUN!

We hurried back to the RMH to get our paperwork and catch the shuttle to Johns Hopkins Outpatient Center. It was very busy. There were people everywhere. A very kind lady helped us. She gave us each a medical bracelet to wear and directed us where to go. We made our way to the 5th floor.

The closer we got the more nervous I became. We took a number and waited about 15 minutes to be checked in. That was the longest 15 minutes of my life. Only about 10 minutes after being checked in they called us back to the room! We were greeted by Dr. Carson's P.A., Judy. She was very friendly. She asked us questions and did a neurological exam on Maddie. She asked for the DVDs of all of her CT Scans and MRIs. She told us she would go give them to Dr. Carson to look over. She said, "If I can get a fire under him, he should be in here soon!" I just thought to myself, "I would wait a lifetime for him!" Before we knew it.....THERE HE WAS!!! My whole body became warm. I warned Stephanie she might have to catch me if I passed out. Luckily for everyone's sake, I didn't. He was so soft spoken, and gentle with his words. He never seemed rushed or hurried although our time with him seemed all too short. Madison couldn't wait to tell him that we had his books and his movie. Of course he offered to autograph a book. A book I did not have. After much contemplation I decided not to bring one or even ask, as this is not what this was about. The selfish part of me wanted to soooo bad. I was so torn, but just the fact that we got to see him was enough for me. I explained that to him and he told us that people ask all the time. I told him that he was such a humble man. He just smiled.

Dr. Carson and Maddie

I briefly explained to him about my aunt giving me the book, Gifted Hands when I was younger, and not knowing why I was so drawn to him and his books. Before I could even finish he said, "Well, now you know!" It brought me to tears. He took the words right out of my mouth. So back to the reason we were there........ He did not feel that we should jump into the surgery just yet. For the next 3-4 months he wants me to do a detailed journal whenever Madison has any symptoms. After those 3-4 months I will then email him the journal and we will touch base remotely. If at that time he feels that surgery is necessary we will make arrangements and HE WILL DO IT! This has all been a complete blessing. We have such peace and understanding about everything. After all of our research we have found that many surgeons are eager to just do surgery, when many times it is not necessary.

Me, Dr. Carson and Madison

On our way out of the office Madison mentioned that she was upset because she didn't ask him for a hug, but that she was ok because he touched her and rubbed her back! It was so sweet. We had a little time before the shuttle came back for us so we shuffled through the hospital looking for the cafeteria that happened to be closed, but we found a little cafe. On the way, a hallway that we walked down was filled these over-sized magazine covers that all had article about Johns Hopkins. We had to stop to oooo and ahhhh over the one with Dr. Carson on the front.

A short time later the shuttle came for us and took us back to the RMH. We played on the playground and in the playroom until it was time for dinner.

Playing in the playroom

Playing on the playground

After dinner we drove around and took some pictures. We even found the mall for a little bit of shopping.....what Stephanie and I do best!! When we got back to the RMH we packed up our stuff and hit the rack.

This stadium was about 2 blocks from the RMH

Saturday morning we got up bright and early to return the rental car and check in with Southwest. Madison, Stephanie and I had a couple hours to visit before we headed in separate directions. Maddie and I were half tempted to just get on the plane with Steph back to San Diego, but we had 4 people waiting for us in San Antonio that had missed us terribly. We kinda missed them too!

We cannot thank you enough for all of the love and support you have shown over the past 4 moths. Please do not stop praying. Chiari Malformation is not something that can just go away. Even surgery does not always cure it. One thing we do know is that miracles DO happen and Madison has already proven to be a miracle.

With Much Love......


  1. Sharon,

    Just wanted to share that I had a Chiari that was decompressed back in 2002 when I was 15 years old. Just like Madison, they watched mine for about six months before they did the decompression. Please reply and let me know if you have any questions!! I would be more than willing to give you a 'patient' perspective seven years later :) My decompression was successful (PTL!!) but it did not "cure" my severe headaches so I am still struggling with that symptom. I will be praying for you guys!!


  2. Thanks for all the updates. Never apologize for the pictures. They are priceless. I'm so encouraged and excited to read what God has been doing. Maddie looks great. Please let her know I'm praying for her. Darla