Do you ever feel like the world is spinning out of control and you are just standing still in the middle of all the chaos? It's like you know you need to do something, but what? As the whirlwind spins around you destroying things in it's path you just stand still like a statue unable to move, unable to help, unable to scream. You keep telling yourself that God is in control, that you can survive this, but can you? I received a call this morning from Parker's doctor. The second I heard his voice my whirlwind started, as he proceeded to give me Parker's test results I just went numb that experience you have in a dream when you need to run but all the sudden your legs don't work. I was listening and praying all at the same time, I was trying to get my heart to slow down and my mind to speed up but it was no use I just froze. As he was done telling me the plan from here on out I was desperately searching for something to say, anything, a question a concern but it was useless I just sat there in silence. I could tell he realized what he had just done, how the words he just spoke would set this family on a different course. As we ended our call and hung up it was like the gates were open and all of my emotions came flooding through me. I was crying, screaming, and shaking all at one time. I tried desperately to stop but I couldn't everything was echoing in my head and the last 10 years of my life played through my mind like a slide show at warp speed, what was happening? I was screaming at God to keep me strong and help me battle the demons that were telling me it was hopeless. All I wanted was for my life to go back to normal, and then the phone rang again. No it wasn't the doctor calling to tell me he was wrong or that Parker was cured like I hoped but it was God giving exactly what I needed. Parker called to see if I would pick him up because he had a migraine. I quickly tried to gather my composure and headed to his school, after signing him out he came down the hallway. He looked fine to me not like normal when he is suffering from a migraine. When we got in the car he turned to me and said he was feeling much better but since I had driven all the way there and since he was already signed out we should go on a date together just the two of us. That is exactly what I needed, a sign from above that although things seem like they are spinning out of control and although I might feel useless sometimes a little thing like a lunch date is enough to help everybody. We enjoyed a great lunch together talking and bonding without anyone else. I know that whatever God is wanting for us it is good and we just need to trust in him even through our trials not only through our triumphs.
At this point we do know that Parker has been diagnosed with Juvenile Ankylosing Spodylitis and we also know that he will be started on a biologic, probably Remicade in the next couple of weeks or so. We are happy to tell you guys that at this point Parker is doing fine and doesn't seemed phased in a negative way with all of this that is going on so we are going to do our best to keep his life as normal as possible. As always your prayers are greatly appreciated and we will keep you updated.

Time Flies When You are Having Fun!

I don't know if it is the daily grind, all the activities, or the speed at which we all live, but I was reminded today of how fast time flies by. In just one year I feel like my kids have all grown so much. I find myself starring at them asleep at night wondering if I have done everything to savor the moments of that day. I really wish life worked on DVR so we could go back to a specific moment and cherish it all over again or simply watch it to remember each detail as clearly as it seemed while it was happening. All to often I find myself trying to recount a story from early in the day and already the clear details have faded to blurry. As we were headed to Parker's M.R.I.'s today it suddenly hit me that the ones last year didn't go as planned. I instantly started to get anxious, all I wanted was for everything to go smoothly and quickly so that Parker could get to school and not miss his project presentation. When we got to the radiology center they asked a million questions like always and I found myself digging in my memory bank for the proper answers. At that point I found my self even more nervous. Parker's test last summer took twice as long as normal because he couldn't lay still and subsequently had to be rescheduled to be done with sedation. What if that was going to happen today as well, what if he was going to have to miss yet another day of school and have more drugs put in his little body? Then like the mature 10 year old he has become, he turned to the tech and me and said I got this. Instantly I felt better, he did have this. It has been a whole year and he has grown up so much. Like a champ he popped up on to the table and announced that he was ready. Mitch, the tech, and I all laughed and proceeded out of the room and the vault like door was closed and locked. I said a quick prayer and off to the waiting room we went. Mitch and I sat by talking and chatting about the kids and reconnecting with each other, yes it is sad but it was kind of like a date. An hour or so later the vault door opened and up popped Parker with a huge smile painted on his face. A smile of pure pride and victory. At that moment it became clear that so much had changed in just a year, here was my baby soaring over another obstacle in his life and doing it with such determination. The tech was so impressed, he said that he got perfect images and that there was no way that the doctors would have any problems reading them. I was so proud but at the same time I couldn't help but think about the fact that everything is going so fast. It seems like just yesterday I was listening to his heart beat on the sonogram and now my first born stands to my shoulders. I am sure that there are many things in the past and in the future that will come and go without a second thought but I will always have the memories of the big picture. The memories of God placing these three tiny people in my life and allowing me to be by their sides as they grow and prosper and for that I am extremely blessed.

my first blog

Well my mother has been telling me for a while now that I needed to start a blog. A place to express myself and keep others updated on our day to day life. I was thinking the other day about what she had said and I actually laughed out loud, what could be so interesting about my life that people would want to take time out of their daily life to read what I had to say? I had no answer but then it hit me this could be the avenue of spreading our story and gathering information and opinions that might not only help us but help others. I am not sure the proper etiquette for blogging but I figured I would start back at the beginning to catch everyone up. It was a cold winter day, no just kidding we won't go that far back just as far back as the day my life changed not only forever but for the better. Dec. 4, 1998 Mitch and I welcomed a bouncing bundle of joy into the world all 8lbs. 9oz. of him. We were totally in love not only with each other but now with this baby, we had no idea what to do with him or how to care for him but I figured loving him was a great start. It just felt like as long as we were together the three of us we would be happy. When Parker was four I went into his room after his nap and noticed that he was walking with his legs straight and refused to bend them, of course I knew this was not normal so I continued to monitor him the rest of the day. When I woke up the next morning I realized it had not improved so I took him to the doctor. The doctor seemed concerned and ran some blood work. I remember praying for good results and the nervous days of waiting for the doctors call. When the doctor called he said that the Parker's white count was elevated and he was concerned that with this finding and the swelling in his knee it could be a form of childhood cancer. Just like that my heart stopped I remember thinking this can't be happening. Parker was put on a daily dose of Motrin for 14 days and then the repeated the tests. I remember praying and asking for others to pray. In those days of darkness I remember feeling a calmness when I prayed a feeling that God was standing right with us supporting us through this. When the doctor called this time he said that Parker's labs came back normal. We were ecstatic as you can imagine ,it was a miracle, how could 14 days of Motrin make everything better. I remember thinking at the time that it seemed odd that all the symptoms had gone away and the blood work was normal but who was I to question Gods work, and besides I had received the diagnosis that we wanted so why was my gut telling me there was more to it? I pushed the concerns to the back of my head and we went on with life. Parker was growing and flourishing. When he was in preschool Mitch got offered a promotion but it would require a move to Brownsville, we had moved several times in our 5 years of marriage so like a pro we packed up sold our house and moved. Shortly after moving to Brownsville Parker started with migraines not just a headache a true migraine with vomiting and excruciating pain. I was instantly concerned, it had been a year and a half since we had the scare so of course I took him to the doctor immediately. We once again saw our lives flash before our eyes ,could this really be happening again could they have missed something the last time? After all the tests and MRI's came back we were informed once again that despite their concerns he was a healthy boy with occasional migraines that he would probably outgrow at puberty. Once again Mitch and I found ourselves thanking God for Parker's health. At this point we found out that I was expecting our second child. We were so excited, Parker had been praying for years for a brother and a sister and Mitch and I had been trying for a couple of years to make his dream of a sibling come true with no luck, so here it was God once again was in charge of our lives and our health. At this point we learned not to question things, he would give us exactly what we needed when we needed it. I had my first sonogram at 10 weeks I remember Mitch, Parker and I were so excited to see the heart beat and hear the doctor confirm that everything was fine. Mitch and I were shocked when the doctor came in and told us that there was not a heart beat, there were heart beats, yes plural. I thought that I would hear a thud from Mitch passing out and hitting the ground any minute. When we got home that evening and the shock had worn off Parker made sure to tell us he knew it was two because he had been praying for a brother and sister. Mitch and I looked at each other and knew that from then on we needed to just sit back and hold on because this was proof more than ever that God was in control of our lives. I remember reading late in my pregnancy that God would never give you more than you can handle I seriously questioned this, here I am in Brownsville with a not a friend or family member within 60 miles of us and twins on the way. When I was about 6 months into my pregnancy Parker started with his knee pain and swelling again. I took him to a new doctor to see what they were going to say. After telling them everything that had happened in the past couple of years the doctor walked out of the room and came back with orders for an x-ray. That was it the x-ray was clear the doctor was done with us and sent us on our way, within a couple of days the pain subsided and life went on. We moved back to McAllen the first week of January 2005. And on January 19Th we welcomed Jackson Mitchel and Avery Grace into our family. Although they were much smaller than their older brother was at birth our love was just as big. I don't remember much of 2005, I think the lack of sleep and hours spent nursing made my mind mush. I do remember at some point that year Parker had been at the lake with my parents for the weekend. When he returned he was complaining once again of his knee hurting. I was done being dismissed by the doctors and went directly to the orthopedic this time. There had to be something that they were missing something that would explain all of the migraines and knee pain. Once again they did x-rays and once again the x-rays came back clear. This time however we did get a diagnosis the orthopedic felt like all of the water sports was causing him to have carpet layer syndrome which was explained to me as nothing more than some fluid on the front of the knee cap. Wearing a brace while knee boarding and wake boarding, and taking Motrin would continue to control the pain and swelling. At this point in my life we were deep in the trenches of two very active one year olds and a equally active 7 year old. Just when I thought God had given us all we could handle Mitch came home with big news he had been given an opportunity to move out of the Valley, and not just out of the Valley but to Austin(our dream city) for work. Once again we sold our house said good bye to family and friends and moved our family to a new home. We were so happy, Parker was in a great school, we found a great church, and the twins were growing and becoming much easier to handle daily. Life was great for the first year. Parker had found passion in wake boarding and was competing in a summer state wide wake boarding tournament. During that summer he was complaining on and off again of knee pain but I thought that all of the practices and competitions were making his swelling a little worse and when he was done at the end of the summer everything would go away again. Well it didn't he was never in daily pain or visibly affected just some stiffness and swelling. Through all of this Mitch and I never let the thought of something more serious escape us. The next summer Parker chose to not participate in the wake boarding competition again, we were baffled he had won first place in his division the summer before why would he just give up on that? Mitch and I had always said the second he didn't want to do it anymore we would step back and let him quit. This was difficult for me we had made friends and memories the summer before not to mention the amount of time and money we had poured into all of his lessons and competitions how could he just quit? It was always in my mind that the Parker I knew wouldn't have given up but I didn't push it we went on with our new summer plans Parker wanted to join the Ski Bees (a ski club that puts on ski shows during the summer on Lake McQueeney) after the first practice Parker's knees were really bothering him. At this point my mothers intuition was front and center telling me something much worse was going on here so I made an appointment with a pediatric orthopedic at Dell Children's. I went into the appointment knowing that I was not leaving with just x-rays this time I would get to the bottom of what was going. Dr. Kahn listened to all my concerns and admitted that he had some ideas of what it could be but wouldn't know until he did some blood work. We went home that day the same way we had many times before with no answers but I had a feeling in the pit of my stomach that the blood work would reveal something, what, I had no idea but something. I figured that I wouldn't hear from the doctor for several days so we went on with life. The next afternoon my phone rang I will never forget answering it and hearing the voice say, "hi this is Dr. Kahn". My heart stopped I had never had a doctor call me personally I knew at that moment it wasn't good news. Dr. Kahn informed me that the blood work had some levels that were concerning and that he wanted to send us to the rheumatologist. I had never heard that term before what was a rheumatologist? I hit the Internet and googled everything I could think of I had myself completely paranoid going in for the first appointment. I remember telling my mom and sisters that I needed someone to come with me to that appointment since Mitch was working and couldn't get off. Darby came into town and went with us she stood by and took notes as our lives were completely changed. I will never forget Dr. Carrasco telling me that Parker had Juvenile Rheumatoid Arthritis. Finally I didn't fell crazy all of my feelings over the last 5 years were right on, but how could I celebrate when this was the diagnosis. Dr. Carrasco could not believe that the swelling in his knees was so severe and nobody had caught it before. He immediately came up with a plan, he would drain the fluid off his knees and inject them with a long lasting steroid. Parker had his first procedure in July of 2008 his second procedure in January of 2009, and his third procedure in March of 2009. We noticed that the steroids weren't lasting as long and that this treatment was not going to be an effective way to treat the arthritis which up to this point was still pauci articular (less than 4 joints). I felt like my questions kept growing how would we treat his knees now that the steroid injections weren't an option Dr. Carrasco told us about a family arthritis retreat in Louisiana that was taking place in June. We all agreed this would be a great opportunity to wrap our heads around the disease and treatment options and not to mention the fact that we could finally meet other families going through the same thing. We found our trip to Jambalaya Jubilee to be life changing Mitch and I had a new bond the bond of two parents coming together to fight for their kid. Their was no doubt in our minds that God had allowed us this opportunity to fellowship and lean together with other families going through the same thing. The most important thing we learned over the retreat was that this diseases is different from child to child and although Parker was by far much healthier than the other kids he had the same disease as them and could flair at anytime and be in the same situation. We knew through the whole weekend that when we got back home we had an appointment with Dr. Carrasco and we would need to come up with a new plan for treatment. We left Louisiana with pages of notes and tons of knowledge. That same week Parker started to complain that his wrist was hurting I knew that this wasn't good. We went to Dr. Carrascos office in late June he confirmed that Parker now had swelling in both knees, both wrists, and his toes it was official he went from pauci articular to poly articular. This was not good we had hoped that he would outgrow this and his migraines at puberty but now it was getting worse. Dr. Carrasco decided to put him back on NSAIDS this time Meloxicam hopefully this would get it under control. At our 8 week follow up appointment Parker was visibly taking steps backwards he was complaining of pain several times a week and the swelling had not improved. This appointment was different than the previous appointments this time I had done tons of research and heard tons of other peoples stories. This time I knew what was next I didn't have to be told. After the check up Dr. Carrasco told us it was time to start Methotrexate Injections, this is a once weekly injection that destroys the immune system. The thinking is that it will keep the body from fighting it self. We knew that it would take 3 months for the full effects of the medication to kick in. Meanwhile Parker was still in pain in fact it was getting worse by the day he was falling apart before our very eyes. He had gone from a kid who loved to be outside skateboarding, wake boarding, and playing with friends to a kid who was playing a lot of video games and watching lots of t.v. I was in constant communication with the Dr.'s office about his lack of progress but we were all trying to give the Methotrexate time to work. It was last weekend that enough was enough Parker my wake boarding fool could not even bend over to put his wake board on. All of the friends and family in our lives were noticing and growing more concerned to I took him back to Dr. Carrasco's office once again praying the whole time that we would get good news. As of Tuesdays appointment Parker has severe pain and swelling in his jaws, hips, pelvis, lower spin, wrists, knees, and one foot. I was devastated as I sat there alone listening to this new rundown I was praying for God to give me the strength to not break down in front of him. I had to be strong I am the Mom I have no choice I couldn't have him see me fall apart it was at that very moment that God once again whispered in my ear I will not ever give you more than you can handle. I am not sure what Gods plan is with all of this or why it is happening to Parker and not me but the one thing God has continued to show Mitch and I over the last 10 1/2 years of marriage is that he is in control, and that with the love we have as a family we will be fine. I am writing this as I wait to hear when Parker's latest MRI's will take place and I am asking for prayers. Prayers for good results, prayers for direction, and most of all prayers for peace for Parker. At the end of all of this he will have a story to share a story to show people how amazing God is, how he never leaves you alone ,and how he is always in control. This will not define us as a family it will just strengthen us.