Crazy Busy

What a summer it has been! It seems that June 18 was forever ago. Since our appointment with Dr. Carson we have had alot going on......

- Micah has his tonsils and adenoids out
- We moved AGAIN! (Yes! Twice in one month!)
- Steve went to Japan for 3 weeks
- 10 headaches
- Many trips to the pool
- 4 doctors appointments
- Allergy shots for Stephen
- House guests
- Lost EFMP paperwork
- And another TAD for Steve from 15 Aug - 29 Aug

Since our visit Madison has had 10 headaches. Some tolerable and some really bad ones. In the Chiari world I do not know if this is alot or not. I just know that it is awful to see my baby girl suffer. I will be emailing the journal to Dr. Carson mid-September and we will go from there. Thank you for your continued thoughts and prayers. So many people have been asking about Maddie and are so concerned. We really appreciate everything.

I called Naval Medical Center San Diego last week to check on Madison's Exceptional Family Member Program (EFMP) paperwork. I submitted it in May, so it should have been completed by now. Well, they informed me that it had been lost. The Corpsman that was working on it had since PCS'd and they had no record of it besides the emails that I had of my correspondence with her. So, today I will go to Wilford Hall and Madison's pediatrician will fill out the paperwork again. The process usually takes about 6-8 weeks, but we are being told that they will try and expedite it. The reason we are hurried to do this is because Steve is up for orders and we need this package to help assign him to a new duty station. It's looking like we will probably be going home to San Diego, but we all now how the military rolls! We can't count on anything until we have the orders in our hands. Right now it is just looking like that is our best option. Madison had a wonderful pediatrician there who looked after her with her head injury as an infant. All of this is in God's hands, so we will be patient and see what He has in store for us. With all that being said, I am hoping the next week and a half until school starts is quite uneventful. We still have the dreaded school shopping to do. Help!!!

Recap

Thank you for visiting! Just wanted to recap what this blog is about. Our daughter Madison was diagnosed in February 2010 with Chiari 1 Malformation.

Chiari Malformation is a congenital condition in which the lowest lying portion of the back of the brain is crowded out of its normal place inside the skull. These downwardly displaced structure, the cerebellar tonsils, can compress parts of the brain stem or upper spinal cord and block the normal flow of spinal fluid into and out of the head. There are many symptoms associated with this condition. Madison's symptoms are mainly headaches, but she also suffers from dizziness and clumsiness. Her symptoms seem to get worse when she is engaged in vigorous activity. We try to limit things that we know cause her symptoms, but we want her to be able to live life to the fullest.

Since February Madison has had a CT Scan and 2 MRIs and will need another MRI soon. She was diagnosed in the Emergency Room at Wilford Hall Medical Center on Lackland AFB, where we live. She was then sent out in town to Christus Santa Rosa Children's Hospital to see a pediatric neurosurgeon who confirmed the diagnosis and recommended surgery. Although we completely trusted her, we just felt a 2nd opinion was needed. We just couldn't let someone cut our baby girl's head open. After a long fight with our insurance company, we went to visit Dr. Ben Carson at Johns Hopkins in Baltimore, MD. Dr. Carson again confirmed the Chiari, but thinks we should wait. He wants to monitor her for the next three or four months and then re-evaluate and make a decision. We were very comforted with his decision to get to know Maddie a little better and watch her. No matter what the outcome is, we know that God has control over all of this. He knows what is best for Madison and that gives us peace. Please follow us on this journey!!

Peace......

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......

Getting Close

Tomorrow Madison and I leave on our trip to Johns Hopkins. I am nervous but peaceful! Can you be both about one thing? Hmmm... We arrive in Baltimore about 12pm. We will get the rental car and go check in at the Ronald McDonald House and then go back to the airport to pick up Stephanie about 4pm. I think tomorrow will just be a day of rest and maybe a little shopping! Friday we will meet Steve's mom for lunch before the appointment which is at 3pm. We can't wait to see Grandma and maybe Uncle Donnie or Aunt Michelle if we are lucky! We also can't wait to meet Dr. Carson. I will keep everyone updated and update the blog as I find things out. I am ready to take lots of pictures! Feel free to call or text me: 619-379-6279. Steve is on leave and will be home with the kids keeping them busy. Thank you to everyone that has prayed for us along this journey! xoxoxo

Thank you!!

This morning I got up with a happy heart. I was going to be positive. Not worry about being let down, yet again! I was just gonna let God take the reigns and help me be patient. Why now, after almost 4 weeks of waiting for something that should take 3 days? We were down to the last 48 hours of HAVING to HAVE this referral authorized! Dr. Carson's office sent a letter stating that they needed to have the authorization in their office by Friday, June 11. The impatient part of me called Tricare EVERYDAY and listened to the automated referral line. Everyday, I was disappointed. Every time I was at Wilford Hall I would bug the Patient Advocacy staff. I was trying to take control when God was the one in control the whole time.

I found out this morning that the referral went through. IT WAS AUTHORIZED!!!

Thank you to all of you that prayed and helped spread the word and encouraged others to pray. No matter who is praying, what they are praying about, or the purpose of their prayer - God answers prayers that are in agreement with His will. I believe many people think that if they just pray and pray they will get what they want. I know that is not the case. We must pray that His will be done. His answers are not always yes, but are ALWAYS in His best interest. When we pray passionately and purposefully, according to God's will, God responds powerfully!

I knew there was a HUGE possibility that it would not be authorized and I just prayed that God's will be done! Yes, I would be a little disappointed, but I know God would not disappoint us. He has a plan for Madison; a purpose for her!

This next week will be quite crazy around here. We are moving on Friday (to the other side of base to a 5 bedroom) and I will be getting the house in order before Madison and I leave on our trip. Many of you have asked if it will just be me and Madison on the trip. Steve and I thought it would be best if he stayed behind with the other kids for several reasons. There will be a special person flying to Baltimore all the way from California. My best friend Stephanie will be there with us! She is making a HUGE sacrifice by being away from her family for a few days to help me and be there for me. Just like she has been the last 12 years. Selfless, helpful, and faithful every step of the way. I love you Steph and I love all of YOU that have been there for us! Please don't stop praying.....praying for our Amazing Madison Grace!

Oh my!

I realize it has been an eternity since I have updated all 3 of you that read this blog. I even skipped school tonight to update. So, since my last post there have been a few changes. Here is just a short run down of last week:

Tuesday June 1 - Spent 3 hours in Patient Advocacy at Wilford Hall. Was told everything was worked out but apparently it was not.

Wednesday June 2 - Savannah came home from 6th grade camp with a double ear infection.

Thursday June 3 - Take Micah to ER with strept throat. Steve gets informed he does in fact have sleep apnea, needs a Cpap, needs surgery for his deviated septum.

Friday June 4 - Last day of school, Savannah's 6th grade graduation with Micah in tow.

Saturday June 5 - two baseball games, Madison is out with some friends and gets stung by a yellow jacket 4 times.

Sunday June 6 - It was a beautiful, drama free day!

Monday June 7 - Our 13th Anniversary, follow up appointment for Micah's strept. Referral to ENT to remove the ever bothersome tonsils. Stopped by Patient Advocacy - nothing has changed! Dr. Carson's office needs the authorization by Friday!!!!

Wheeeeeew!!! Here I am...Still standing. I don't want to make it seem like I am complaining even though at this point I really might be, but I am truly grateful that we are all healthy. (Check back tomorrow to see if that still stands.) Hopefully we should be moving in the next few days. Waiting on a go from the leasing office. I would really like to get settled before Madison and I leave for Maryland. Other than that; school is out and we plan on spending alot of time at the pool and having fun. We now have a 7th grader, a 5th grader, a 2nd grader and a Kindergardener. How can that be??

Please continue to pray that we receive the authorization in time, and for Madison to stay pain free. She had one headache this past week and one last Saturday that almost had us in the ER. Thank you to everyone who has called, emailed, sent cards and prayed for us. It has been a rough 3+ months, but we know that by the grace of God it will all work out! We just have to THINK BIG!!

There have been over 1000 hits on this blog. Unless all 3 of you are checking the blog multiple times a day, there must be many visitors. Please feel free to leave a comment and say hello. It would mean alot to us!

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