Wednesday, December 16, 2009

It is never pleasant to weather storms, the clouds start building, the winds pick up, the skies darken, lightning strikes, and thunder booms. You lay their thinking about it and increasingly feel the anticipation of the down pours of rain. You count every second like it is a minuet and every minuet like it is an hour. You find yourself longing for the sun, for the comfort of day light as if that will make everything o.k. again. You feel so alone sitting there in the darkness as you loose lights, TV, and all the creature comforts you have grown accustomed to. You feel stripped of all power and strength, you suddenly feel like a child wanting to crawl in bed with your parents to feel safe and protected from the chaos swarming outside the windows. You tell yourself it will pass and all will be fine again but you find no comfort in those words as you here a huge crash echo through your house. But as the rains slows to a drizzle, the thunder is silenced and light yet again appears you can suddenly breathe. As the hours speed back up to minuets and the minuets to seconds life resumes and all goes back to normal until the next time. What gets you through those storms? What gives you the faith that all will return to familiar with the simple passing of clouds? I have learned to depend on my faith lately, my faith in GOD through him I believe all things are possible. We seem to be weathering many storms in our house right now. But whats funny is that as my faith grows and strengthens these storms aren't as terrifying. I don't feel lost without direction or all alone. I never feel like I am stuck in the dark, I just keep pushing through following the light to the blue clouds where life is happy and peaceful again. It doesn't get any easier to weather these storms and the storms don't get any less powerful but I have faith that this too will pass and all will be normal again. I think God gives us just what we need when we need it and nothing more to keep us leaning on him for guidance and strength. That way when these storms approach us we can hunker down and weather them with him by our side. Just like our parents were by our side during the late night thunderstorms of our childhood. I am thankful that God has enough faith in me to believe I will survive these tests and challenges and come through it a better christian. I am not going to sit here and tell you we are great and everything is perfect because as some of you know this has been a rough couple of weeks with new challenges but I do know that although I don't always have the answers I am living with someone who does, I'm not talking about Mitch, and I am going to trust him to reveal them to me. I ask for prayers for my understanding and willingness to adapt. O.K. I admit it I am a control freak so I tend to think I have to remain in control of situations at all times but God has blessed me with 3 wonderful kids who keep me challenged daily. Parker has been a picture of health lately but with that we got comfortable and lord knows that is a dangerous place to be. Avery is making the best of the situation and throwing curve balls, well lets be honest she is just launching balls at us from all directions. Jackson is growing before our very eyes into a, very grown up and already been kissed, soon to be 5 year old. And Parker is stuck somewhere between childhood and teenage years, thankfully no kiss. All 3 doing their best to keep us on our toes. I pray daily, but I am asking for special prayers from you guys this week as well. Pray for my wisdom, knowledge, and strength to handle every situation as God would want it handled. I feel immense pressure not to disappoint him since he hand picked me to raise these kids as his own but sometimes I feel like I am spinning my wheels and not getting anywhere. All I know is that without God's input into our lives I would have already had one of these kids on Oprah letting me and the world know how I have screwed them up, and the fact that hasn't happened yet gives me even more faith that this too will blow over and the sun will shine through the blue clouds come morning:)

Monday, November 23, 2009

Thanksgiving

Wow it is hard to believe that it is that time of year again it seems like we just started 2009 and now it is quickly coming to an end. We have been so busy lately it seems like the time is flying by too fast. I found myself sitting on the couch tonight staring into the distance, I kept sitting there thinking of everything that needed to be accomplished before sunrise and I got to the point in my list in which I was convinced that it would be easier to sit there and fail then keep going and still fail. The kids and I are headed to the lake to spend the holidays with my Mom and Dad and me and my big mouth volunteered to make the side dishes for our Thanksgiving meal, which isn't a big task in its self but when I wait until 8pm the night before we are due to leave it was not as easy as it could have been, not to mention I still needed to pack for all three kids and myself, and clean house, and see to it that Mitch would have stuff to eat for the week and the list keeps going WHEW here I go again with my list making it is a bad habit I can't stop.....but anyways as I was sitting tonight feeling overwhelmed and looking for pity or magical fairies to do it all for me I realized what it was that we were getting ready to celebrate. Thanksgiving! It was amazing as I sat there and thought about it all the stress left me and I had an instant energy fill me. I took the focus off of the task at hand and focused on the hands on task in my life. If I would do that more I think my list making would slow down and my mind would rest you see it is the things we are thankful for that matter, not how much Christmas shopping has been accomplished or who is making what for what meal or the fact that the kids are destroying the house faster than humanly possible. I realized tonight that I always say I am thankful and in my prayers I list them all one by one but do I really take full recognition for all the blessings that surround me. Yes of course we are thankful for health in this house and for all the people who love and support us and for Mitch's great job, but what about for the sweet potatoes that a neighbor left on the front porch or the fly that landed on the Venus fly trap so that I didn't have to go hunt down the next bug to feed it, you see if we sit there and take inventory of our thanks the things that didn't happen or that need to happen don't seem like failures anymore. I am thankful for our clothes whether they are clean or dirty(which tonight are dirty) and I am thankful for the fact that I have the means in which I get to stay home and live this life with the three beautiful kids God has blessed me with. I know I am starting to make a list again but I think I would rather sit around and list the things I am thankful for over the things I need to do. So with this I want to tell each and everyone of you I am thankful for you and hope that you find that your blessings far out way your wants or needs. HAPPY THANKSGIVING!

Wednesday, November 4, 2009

I have been working on a project this week taking my home movies and transferring them to DVD's its amazing the moments that we can capture and always have to look back on. I have only made it through three movies because I find myself mesmerized and wanting to sit and catch every moment as if it were happening for the first time. As I watched the first four years of Parkers life I realized how different things were I found myself watching it wanting very much to be that young blissfully clueless mom that I was at that point in our lives. Things seemed so simple we lived in a very simple two bedroom apt. with mix matched hand me down furniture our love abundantly visible. Our dreams where huge and nothing was going to get in the way of our promising future. Little did that Mom on the tv know that life would change and normal would be way different than she could have ever imagined. I can't believe that I am the same person I sit there and watch on the t.v. I feel like I was cheated out of the ignorance she had I found myself wanting to reach out and slap her and say wake up and enjoy your healthy baby boy because there will be a day in the near future that your having to inject him with meds at home in your kitchen to keep him healthy. I have heard of people wanting what there neighbors of friends have but seriously I just want what I use to have. I want to be the mom that didn't have a sharps container on the kitchen counter or the mom that didn't have to lay in bed at night worrying about the future health and happiness of her baby. I wish I never had to here the words Ankylosing Spondylitis but I did and with God at my side I have weathered the last few years and will continue to do the same for the rest of my time here. I look towards the future and thank God for all that he has blessed us with up to this point. I think watching these videos has taught me to enjoy each day and don't anticipate the future that awaits you. God will be there to guide you through. Although that mom on the tv would have never know what awaited her I am proud of her ability to adjust for the baby she loves so much.

Tuesday, October 6, 2009

Blessings

You know that familiar sound that takes you back in time to a certain memory? It could be a song that pops on the radio, or a airplane flying overhead. I realized last night as I heard the familiar sound of a ball bouncing that my mind instantly flashed to Parker standing in the street shooting baskets, simple I know but you see up until lately it was just that a memory in the past and as I heard the familiar sound again last night it was a sweet sound. It was a sound that marked another victory in this house, another part of the puzzle put back in place. As I was doing dishes watching out the window at the boys playing basketball together I realized that sometimes in life it is the small things we miss the most and don't even realize it. God has been great to us Parker has been responding great to his treatments and he is morphing a little everyday back into my fun loving energetic boy. As we continue in our busy life as a family of five I make it my life's mission to see to it that we focus on the positive of every situation and that we don't let one blessing escape without thanks. We have tons to be thankful for and this is only one example, yes to everyone else it is just a bouncing ball, but to me it is a blessing. Albert Schweitzer once wrote, In the hopes of reaching the moon men fail to see the flowers that blossom at their feet. Don't let this happen give thanks in all that you do and you to will be blessed.

Thursday, September 10, 2009

You know the feeling you get when something big in your life is fixing to take place, first day of school, a new job, waiting the arrival of a new baby, or closing on your first home. The feeling of complete nervousness and fear. I have had that feeling several times over the course of my life, the butterflies settle in a couple of days ahead of time and then on the big day I get all the other lovely symptoms like sweaty palms and a pounding heart. And then you start to always think the worst only to hope that the best happens. Yeah, that feeling found it's way back in to my mind and body again this week, I have known for over a week that Parker would be going in today for his first infusion of his new medication Remicade. I kept telling myself it was going to be fine but sure enough a couple of days ago I started with the butterflies which kick started complete fear. The fear of something going wrong or the fact that the medicine might make him sick or the fear that it might be painful I even had myself scared of crazy things like what if I passed out. The only thing that calms my fear is prayer so I have been praying constantly since then. When my alarm went off this morning I just stayed still hoping I was dreaming and that the day was really not here already but then Jackson promptly dug his foot into my back and I jumped up. We rushed around like the dysfunctional family we are in the morning everyone dragging their feet and me freaking out about being late until I noticed that Parker was really quiet, unusually quiet, I asked if everything was o.k. and he replied with a simple nod of his head yes. I instantly realized that I wasn't the only one freaking out inside and like the quick flip of light switch I went frazzled and scared to calm and supportive. I like to call it my mothering under pressure, the kind of calm that to everyone around me it looks like I am in control but don't fool yourselves I've just adapted the great skill of acting. We left the house got the twins drooped off at school and made it to the doctors on time. We had a great appointment with the doctor and had a lot of our questions answered then the nurse came in and placed Parker's I.V. line, that was not exactly a walk in the park for Parker or me I was waiting to see who would pass out first him because of the gallons of blood they took or me because of watching him squirm in pain, but thankfully we survived with nothing more than pale faces. The doctor was so sweet during this time it is like he knew that this was scary for us in fact the entire staff was very comforting and sweet they made you feel like you were their only concern at that point. They led us back to the infusion room which is several reclining chairs for the patients and several hard plastic chairs for their visitors not to mention T.V.'s, games, movies, food, drinks, and even craft projects. It was a nice environment to help keep the kids calm and entertained. Parker sat like a champ in his chair for three hours or so which to anyone who knows him is a true victory in itself. We actually kind of had fun as crazy as that sounds. It is too soon to tell if the medicine will be effective in relieving his pain but the fact that we made it through today is reason to celebrate. We go back in 14 days for another treatment and then again 30 days after that before we settle into the once every 8 week schedule. Thanks to everyone for all of the encouraging words and behind the scene prayers, also a big thanks to the people who have pitched in and helped with the logistics of juggling the other kids, it is you who make it possible for me to do my job.

Wednesday, September 2, 2009

Here Comes The Sun

With the rain comes the sun, and we all love sun! Today the sun was shining bright. It was a great day and I thought that I would share some good news instead of all bad. For those of you who didn't know Jackson has been having issues for some time now with his stomach it started over a year or so ago and has continued to roar it's ugly head on again and off again since then. We had been sent to the gastroenteralogist back at the beginning and nothing was ever discovered from that visit, sounds like my life right....and with this latest onset the pediatrician and I were worried that it might be some type of auto immune disease since we seem to have a family history now, but today we got a call on his latest blood results and the auto immune panel came back negative(praise the lord), and the celiac panel came back negative as well. Although we are still waiting on some other panels to come back is was a huge sigh of relief to realize that we are more than likely not dealing with the same disease as Parker. I have high hopes that this will at least guide the doctors in finding what might be ailing him. We have a busy week next week Parker has a neurology appointment to touch base and look into other migraine medication options, he also has a rheumatology appointment so that he can start the infusion of his new medication Remicade. Jackson has an appointment as well with the gastroenterologist to go over his latest labs and symptoms. I am asking everyone to be praying for Parker over the next week as he has been struggling to keep up with the demands of 5th grade upon all of his absences and for the infusion process to be the answer to his pain relief. Jackson will need prayers to be strong and courageous with his appointment, unlike Parker, Jackson is terrified of doctors and procedures and it has been a real test for him to be a pin cushion over the last few weeks. I think that with all that is going on we have learned to appreciate days like today where everyone is symptom free and feeling 100% and for that we are grateful. I will keep everyone updated on what we find and how the infusion goes but just know that we are all doing good and we continue to see that through prayer we find comfort.

Tuesday, August 25, 2009

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.

Monday, August 24, 2009

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.

Thursday, August 20, 2009

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.