Monday, June 28, 2010
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!!
Wednesday, June 23, 2010
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.
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......
Wednesday, June 16, 2010
Wednesday, June 9, 2010
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!
Monday, June 7, 2010
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!!
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