tag:blogger.com,1999:blog-42576652572340406492024-03-14T03:26:53.227-07:00Amazing [Madison] GraceThanyhttp://www.blogger.com/profile/03985528576467550201noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-4257665257234040649.post-28905435645792567562010-08-11T07:49:00.000-07:002010-11-11T06:07:08.750-08:00Crazy BusyWhat a summer it has been! It seems that June 18 was forever ago. Since our appointment with Dr. Carson we have had <span id="SPELLING_ERROR_0" class="blsp-spelling-error">alot</span> going on......<br /><br />- Micah has his tonsils and adenoids out<br />- We moved AGAIN! (Yes! Twice in one month!)<br />- Steve went to Japan for 3 weeks<br />- 10 headaches<br />- Many trips to the pool<br />- 4 doctors appointments<br />- Allergy shots for Stephen<br />- House guests<br />- Lost <span id="SPELLING_ERROR_1" class="blsp-spelling-error">EFMP</span> paperwork<br />- And another TAD for Steve from 15 Aug - 29 Aug<br /><br />Since our visit Madison has had 10 headaches. Some tolerable and some really bad ones. In the <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Chiari</span> world I do not know if this is <span id="SPELLING_ERROR_3" class="blsp-spelling-error">alot</span> 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.<br /><br />I called Naval Medical Center San Diego last week to check on Madison's <a href="http://www.persnet.navy.mil/CommandSupport/ExceptionalFamilyMember/">Exceptional Family Member Program</a> (<span id="SPELLING_ERROR_4" class="blsp-spelling-error">EFMP</span>) paperwork. I submitted it in May, so it should have been completed by now. Well, they informed me that it had been lost. The <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">Corpsman</span> that was working on it had since <span id="SPELLING_ERROR_6" class="blsp-spelling-error">PCS'd</span> and they had no record of it besides the emails that I had of my <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">correspondence</span> 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!!!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com1tag:blogger.com,1999:blog-4257665257234040649.post-61504814379760553212010-06-28T18:22:00.001-07:002010-07-04T07:02:24.588-07:00RecapThank you for <span id="SPELLING_ERROR_0" class="blsp-spelling-error">visiting</span>! Just wanted to recap what this blog is about. Our daughter Madison was diagnosed in February 2010 with <span id="SPELLING_ERROR_1" class="blsp-spelling-error"><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Chiari</span></span> 1 Malformation.<br /><br /><span id="SPELLING_ERROR_2" class="blsp-spelling-error"><span id="SPELLING_ERROR_1" class="blsp-spelling-error">Chiari</span></span> Malformation is a congenital condition in which the lowest lying portion <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">of the</span> 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">brain stem</span> or upper spinal cord and block the normal flow of spinal fluid into and out of the head. There are many <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">symptoms</span> associated with this condition. Madison's <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">symptoms</span> are mainly headaches, but she also suffers from <span id="SPELLING_ERROR_7" class="blsp-spelling-corrected">dizziness</span> and clumsiness. Her symptoms seem to get worse when she is engaged in <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">vigorous</span> 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.<br /><br />Since February Madison has had a CT Scan and 2 <span id="SPELLING_ERROR_8" class="blsp-spelling-error"><span id="SPELLING_ERROR_3" class="blsp-spelling-error">MRIs</span></span> and will need another MRI soon. She was diagnosed in the Emergency Room at Wilford Hall Medical Center on <span id="SPELLING_ERROR_9" class="blsp-spelling-error"><span id="SPELLING_ERROR_4" class="blsp-spelling-error">Lackland</span></span> AFB, where we live. She was then sent out in town to <span id="SPELLING_ERROR_10" class="blsp-spelling-error"><span id="SPELLING_ERROR_5" class="blsp-spelling-error">Christus</span></span> 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 2<span id="SPELLING_ERROR_11" class="blsp-spelling-error"><span id="SPELLING_ERROR_6" class="blsp-spelling-error">nd</span></span> 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 <a href="http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/team_member_profile/E83A85D46351E25BE722939B61854C65/Benjamin_Carson">Dr. Ben Carson </a>at Johns Hopkins in Baltimore, MD. Dr. Carson again confirmed the <span id="SPELLING_ERROR_12" class="blsp-spelling-error"><span id="SPELLING_ERROR_7" class="blsp-spelling-error">Chiari</span></span>, 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!!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-77104582860344803862010-06-23T07:00:00.000-07:002010-06-24T15:20:01.190-07:00Peace......<div align="center"><em>Disclaimer: This story documents our trip. </em></div><div align="center"><em>Please beware as there are alot of pictures!</em></div><div align="center"><em></em></div><div align="center"></div><div align="center">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. </div><div align="center"></div><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486070659941176178" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3t6KqH_efde0rSWyM_7rJXJ-_a66KRlp4piGqyv7LUKlEC_zq1DK35ofYLm2xSGo50aShsiI_j9MlFmBf0REaJsa2G5oi25AfWvf9IcySSG7ZhqU7XE8Rg3-0eIVGlfWnixq1DTyoPC7j/s400/003.JPG" /><br /><div align="center"></div><br /><div align="center">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. </div><br /><div align="center"><br /></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 267px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486065385796907602" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEVZsC15y82pYJfee16yVa1RcR38g8ato3-MCclI3AE_Ya5tSai71kAPKqF28S1s9WVR-gch_oEB0GJ_6C7RbaHz1FbYpkdy4J4JVlR3oPZNLepNWQQcU5KmtZdyI9km7HjQpezGHgA1AI/s400/065.JPG" /><br /><br /><div align="center">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!<br /><br /></div><br /><div align="center"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486064723363120850" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJbEOFqfKJDhv54deWvVXz32DGLuXUqzZ1lNpDOBlOO0u_7T9uPl3s_sAHEah4PQ4VtjCO3XdRCcPWHo2a_6IYqEs1JSy2reDn-6oDC0ZpHJYkK1xIdEjEUqOz04BzXvHsvoh3BJ8qMKo3/s400/009.JPG" /><em>Madison and Aunt Nini aka Stephanie</em><br /><br /></div><br /><div align="center"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486064283416381954" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggnaKagwhFDgQptbgNk320OiM6l0pDVziaQy5rKQd5UJSuwxF3sLoVJ5QkgxeNSRNE883zPmKikV-FZlQ5Q104oLzgN5QAjcbt2erg9HCv3WVuSKTi1B86FOsH7xqFk5fXyeJNhONZjlAM/s400/008.JPG" /><em>Leanna and Mark (he hates taking pictures, can you tell?) </em></div><br /><div align="center"><em><br /></em></div><br /><div align="center">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.</div><br /><br /><br /><p align="center"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486063216461892738" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoCjmrjz1gmf737a5q-U3N2TQLDoJYtbm5yZ3L7_KSqwEzcqoIWjVojumTvynpRKOOJoJiQOpJTWWvDVNOFnhgwdd-M169TNKNpcvxM8KIZfpSfAmyxZeDZnlEuykg_XbNaUlGuJSfoPcx/s400/008.JPG" /> <em>Donnie, Michelle, Becky, Daijsha, Me, Madison</em><br /></p><br /><p align="center">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! </p><br /><br /><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486066361174551810" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeIL3tb_qkhHT8oOJKfyOpFLWxUN87RPBtS-aA0Nbp7-iPKibIF8UkaugOa_JLjBkR2x3aobK7EVpQltjXjXuQLrAcq4y4fh3ipn1REXdHoZpjcqxbFpgj3-78pKPbuk5foh9bzxCx46zd/s400/015.JPG" /><br /><p align="center"><em>Daijsha and Maddie having FUN!<br /></em><br />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.<br /><br /></p><br /><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 267px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486060832838864498" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0AlD19A-M-4SpahPsjpF5CalK_P_Mcz1Oq-4z6fV914T81FucpeIbbk5DfXdAZLDWZwD564VlE3DTcs-JJasCU_KxIbKaWzmjLr0sNeAGu4lP-HJ8gWfzcXDVj0wClUjEfDZdQPCWDJvb/s400/024.JPG" /><br /><br /><br /><div align="center">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.<br /></div><br /><br /><div align="center"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 267px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486057928831081762" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZizBczAiEshkCI-ck1MKKqUiwsm0ghwyw1qGjQx4NWS_eVsDStxWdSM3LqWbzBqdVCVAJcjByxIJnMtPxvDnD1wlJm9mSJIvMmq9fuFGqSOkicXDESOo2Pz-rNE2hDyoI94kwPVVoNAy/s400/028.JPG" /><em>Dr. Carson and Maddie</em> </div><br /><div align="center"><br /></div><br /><div align="center">I briefly explained to him about my aunt giving me the book, <em>Gifted Hands</em> 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.</div><br /><div align="center"></div><br /><div align="center"></div><br /><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486067448509834386" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijJKm5gPtYvb9zogWogWHPcplpnP4Y2K0eKn8uHEO9BmTNYe8mApEJaZ_dt20v7r2Q35gnIgaIdziqKoADVpWRQtVWTrKjdevzQ0wv3WSkLAOvazvIS2gju1nfpV7XtMukYupvScStvCAh/s400/030.JPG" /> <p align="center"><em>Me, Dr. Carson and Madison<br /></em><br />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.<br /><br /></p><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 267px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486055479961936146" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuy_Ydt0_VtgV3ZerF8WrRIE54cExU189NE_eDJR5VdKHpssuq5foKkFmN4mu8sajvW9R1Ex8xWd0STRzECvjl-7fWRxWPBddHoHDlXDR6aaErYWs73FEZcauMBX-mWbAwoVT-CmiD4JkX/s400/031.JPG" /><br /><br /><p>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.<br /></p><br /><p align="center"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486053160283840594" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9wHiXo36HSFc7Ihfsy3WYwpDe-N2x-H8tMAgFipWgWFLHgesIbW9gJ3RPNOTXTf3BSt5HhPEOquh2csBlJS9wdVEGeB_RCWADpmhg3pw6h1x694KpvDSNR4-XuX1Y8S_RjkDyGDdlMk7Q/s400/038.JPG" /> <em>Playing in the playroom</em><br /></p><br /><br /><br /><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486052078451448610" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_G6mdT65V_ydOO_mnoaVT-cCXGwG1sKTz9syH21lJkNJlP12CB7m5NKUZQzOJPiSmTCT6jrhLrKYBL2-Ux8B80IPHuJuis3y4tvajCpO2eS1UIijR5xoYMb-73vhF_IJMGShGqdvzlZRn/s400/036.JPG" /><br /><p align="center"><em>Playing on the playground</em><br /><br />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.<br /></p><br /><div align="center"></div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5486051053933937314" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDpBgVAFVXQg6E5tRuWQIKGCOdjh_pcnhfhZrGWh7Ozh3Q2uH5nutZjkYMmFveo4RVlQyQ0qnyAdPVwqETmZhn-HPqWg3iL27vfgkubRm8QHdBWAbA0pldC2gvfXffvQZY6J_S5JPp9wJA/s400/062.JPG" /><br /><p align="center"><em>This stadium was about 2 blocks from the RMH<br /></em><br />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!<br /><br />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.<br /><br /><br />With Much Love...... </p>Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com2tag:blogger.com,1999:blog-4257665257234040649.post-12735676511090192702010-06-16T15:22:00.001-07:002010-06-16T15:36:29.684-07:00Getting CloseTomorrow Madison and I leave on our trip to Johns Hopkins. I am nervous but peaceful! Can you be both about one thing? <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Hmmm</span>... 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! <span id="SPELLING_ERROR_1" class="blsp-spelling-error">xoxoxo</span>Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-74533671037800641392010-06-09T06:39:00.000-07:002010-06-09T07:14:35.996-07:00Thank 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Tricare</span> EVERYDAY and listened to the automated referral line. <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">Everyday</span>, I was <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">disappointed</span>. <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Every time</span> 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. <br /><br />I found out this morning that the referral went through. IT WAS AUTHORIZED!!! <br /><br />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! <br /><br />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! <br /><br />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 <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">have</span> 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 <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Steph</span> and I love all of YOU that have been there for us! Please don't stop praying.....praying for our Amazing Madison Grace!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com1tag:blogger.com,1999:blog-4257665257234040649.post-20125328980365369242010-06-07T19:38:00.000-07:002010-06-07T20:04:15.277-07:00Oh 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:<br /><br /><strong>Tuesday June 1</strong> - Spent 3 hours in Patient Advocacy at Wilford Hall. Was told everything was worked out but apparently it was not.<br /><br /><strong>Wednesday June 2</strong> - Savannah came home from 6<span id="SPELLING_ERROR_0" class="blsp-spelling-error">th</span> grade camp with a double ear infection.<br /><br /><strong>Thursday June 3</strong> - Take Micah to ER with <span id="SPELLING_ERROR_1" class="blsp-spelling-error">strept</span> throat. Steve gets informed he does in fact have sleep apnea, needs a <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Cpap</span>, needs surgery for his deviated septum.<br /><br /><strong>Friday June 4</strong> - Last day of school, Savannah's 6<span id="SPELLING_ERROR_3" class="blsp-spelling-error">th</span> grade graduation with Micah in tow.<br /><br /><strong>Saturday June 5</strong> - two baseball games, Madison is out with some friends and gets stung by a yellow jacket 4 times.<br /><br /><strong>Sunday June 6</strong> - It was a beautiful, drama free day!<br /><br /><strong>Monday June 7</strong> - Our 13<span id="SPELLING_ERROR_4" class="blsp-spelling-error">th</span> Anniversary, follow up appointment for Micah's <span id="SPELLING_ERROR_5" class="blsp-spelling-error">strept</span>. Referral to <span id="SPELLING_ERROR_6" class="blsp-spelling-error">ENT</span> to remove the ever bothersome tonsils. Stopped by Patient Advocacy - nothing has changed! Dr. Carson's office needs the authorization by Friday!!!!<br /><br /><span id="SPELLING_ERROR_7" class="blsp-spelling-error">Wheeeeeew</span>!!! 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?? <br /><br />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!! <br /><br />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!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com5tag:blogger.com,1999:blog-4257665257234040649.post-5584010163740137362010-05-24T20:13:00.000-07:002010-05-24T20:40:25.842-07:003'sThey say bad things usually come in 3's, but today for us it was 3 WONDERFUL things!! After a terrifying situation <span id="SPELLING_ERROR_0" class="blsp-spelling-error">with</span> 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.<br /><br />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 <span id="SPELLING_ERROR_1" class="blsp-spelling-corrected">Concierge</span>, 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 <em>Southwest Airlines Medical Transportation Grant Program</em>. 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 <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">eligibility</span>. 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!!"<br /><br />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.<br /><br />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.<br /><br /><span id="SPELLING_ERROR_3" class="blsp-spelling-error">xoxoxoxo</span>Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com2tag:blogger.com,1999:blog-4257665257234040649.post-40440623575760072322010-05-21T18:53:00.001-07:002010-05-21T19:00:55.387-07:00Moving AlongJust got word today that <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Madison's</span> 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 <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Tricare</span> to approve the second opinion. They are giving us a hard time because Dr. Carson is in the <span id="SPELLING_ERROR_2" class="blsp-spelling-error">Tricare</span> North region and we live in the South region. He accepts <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Tricare</span>, 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Tricare</span> way! Thank you to everyone that has offered to help out. All of your kind words and offers are greatly appreciated. <br /><br />Lots of Love......Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-20378947686515552812010-05-14T09:33:00.000-07:002010-05-14T09:45:11.516-07:00Not So Bad<div>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 <span id="SPELLING_ERROR_0" class="blsp-spelling-error">whoppin</span>' 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)!</div><div> </div><div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 373px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5471167176546543778" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6AgjZlGkvRICeLw1FubtMExc9l6tHuBxjGWGBotNbLTmtNs4ACUnqGloDyM9A1svK-DCZAW8PyT_2cB-MfrUA1HfsV-CBV2Eznxnvlkg2QqfW5sG61jbw-3BgoAEzb7taq9FTypj03qeP/s400/008.JPG" /></div><br /><div></div><br /><div align="center"></div>Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com1tag:blogger.com,1999:blog-4257665257234040649.post-40752692104761204092010-05-11T06:46:00.000-07:002010-05-16T14:30:54.149-07:00ChangeThere 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. <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Mancuso</span> 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.<br /><br />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. <span id="SPELLING_ERROR_1" class="blsp-spelling-error">Mancuso's</span> opinion, but for the justice of our daughter we want to be certain that the decision we have to make is correct. After <span id="SPELLING_ERROR_2" class="blsp-spelling-error">alot</span> 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....<br /><br />At a young age my aunt gave me a copy of the book, <em>Gifted Hands: The Ben Carson Story. </em>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.<br /><br />Please pray that this process goes smoothly for us. I will be doing <span id="SPELLING_ERROR_3" class="blsp-spelling-error">alot</span> 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 <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Tricare</span> will pay for so we might being eating <span id="SPELLING_ERROR_5" class="blsp-spelling-error">Ramen</span> Noodles for a bit!! All kidding aside; I know.....God will provide!!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-43585876625802193192010-05-05T10:33:00.000-07:002010-05-05T10:43:11.680-07:00Good 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 <span id="SPELLING_ERROR_0" class="blsp-spelling-error">Chiari</span>. 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.Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-22974097734283552732010-04-30T13:58:00.000-07:002010-05-13T19:40:47.352-07:00FaithSo tonight at 6:45pm Madison will have an MRI of her spine. They told me to be prepared for it to take an hour and a half! I have faith that Madison will do well. I went this morning and bought her "Hannah Montana The Movie". She has seen it once before but it is not one that we own, so hopefully it will keep her attention. I am not as nervous or anxious this time since she did so well last time and they let me be in the room with her. This time I will go prepared with some reading materials to keep me busy. I am glad to get this over with but that means it brings us closer to her next Neurosurgery appointment which I am still very nervous about. This next appointment will be more concrete; more real and that scares me! But I do know that God knows the outcome and <em>THAT</em> I have faith in!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-78456694398313851092010-04-17T07:11:00.000-07:002010-04-17T07:25:22.640-07:00Nothing MuchNot much new to report... Madison has been doing very well. Just one headache this week. We found out she will have the MRI of her spine on April 30 at 6:45pm. They told me this one would last about 1.5 hours but they <span id="SPELLING_ERROR_0" class="blsp-spelling-corrected">allotted</span> 2 hours just in case. Her head MRI was about 45 minutes and she did so good. I did not know that I would be allowed back in the room with her, so I was bored out of my mind. This time I will bring a crossword puzzle or a book! Her last MRI I bought her Princess and the Frog for her to watch during the MRI. It was her very first time watching it so it really kept her interested. If anyone knows of any good movies coming out before April 30 let me know!!Sharonhttp://www.blogger.com/profile/11509154751259700998noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-24862187799914938772010-04-06T10:19:00.000-07:002010-04-13T10:20:34.461-07:00SurgeryMadison has to have surgery for her Chiari Malformation. We know it is the best thing for her. We would rather her suffer through the surgery and recovery than for the rest of her life. We are trying to understand it all. Madison does not really know yet, but we will tell her when the time is right. She has to have some more MRIs before the surgery. We might have to wait until school is out because she has already missed too much school. Madison will be having her surgery here in San Antonio. The pediatric neurosurgeon that she saw is wonderful and we completely trust her. Thank you all for your thoughts and prayers during this difficult time. Please continue to pray for us.Thanyhttp://www.blogger.com/profile/03985528576467550201noreply@blogger.com0tag:blogger.com,1999:blog-4257665257234040649.post-67342211888439007902010-02-23T10:09:00.000-08:002010-04-13T10:13:41.865-07:00Miraculous!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj32YepT25py1F-mCkh-UA-AfzQAhe6Uqg1aFaMOnpB9Uq4MflJzoh-kF-04hExee4I9-rKR6fI1qtDMJFw9MdTKIkhBlyOQiA99McBtdcqetXxweU3MUpdbQSzhK-QoJmEKVHCrmdzwx1V/s1600/602855081_img_8140z.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj32YepT25py1F-mCkh-UA-AfzQAhe6Uqg1aFaMOnpB9Uq4MflJzoh-kF-04hExee4I9-rKR6fI1qtDMJFw9MdTKIkhBlyOQiA99McBtdcqetXxweU3MUpdbQSzhK-QoJmEKVHCrmdzwx1V/s320/602855081_img_8140z.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5459671295857412274" /></a> Thank you so very much for all of your prayers. It has been a very draining two days. Emotionally, physically, and mentally. We found out yesterday that Madison has Type 1 Chiari (kee-ar-ee) Malformation. It is a brain disorder that affects the cerebellum. She has been having several headaches. Well, on Sunday she got a headache. It seemed to get better, but by Monday morning she was in severe pain. I took her straight to the ER. While we were in the waiting room she told me that she hit her head on Sunday while at a friend's house. That changed everything. Had she not hit her head they might not have done the CT scan that showed the CM. What a silent blessing! It was such an answer to prayer, but also quite a huge thing to take in. If you are not aware; Madison has quite the history of head injuries among other medical issues. We are so grateful that none of these past issues have caused any permanent problems. No one is positively sure what causes CM. They say it can be congenital, it can be hereditary or it can be acquired after a head trauma. We will never know exactly what caused it, but we are going to do our very best to take care of her should anymore symptoms arise. I had a very hard day yesterday in the ER, but I was greatly encouraged by many friends. Voicemails, text messages quoting scripture, and just constant reminders that there is a plan for Madison's life. It has been a bumpy 6 years, but no matter what Madison will continue to stand as a testimony of His miraculous power! She has overcome great things. Great things that have made us all stronger. Madison will have an MRI to get a better view of the CM. This will help the neurosurgeons better gauge the size. I will continue to update as we find out more info. Thanks again for all of your thoughts and prayers.Thanyhttp://www.blogger.com/profile/03985528576467550201noreply@blogger.com0