This meeting was amazing! The familes that I have met are the most amazing people! The kids all got along and Izzy and Devon were amazed that there was other kids that had JIA also and could play! I have to say that is also nice to let the kids play and KNOW that these parents hate germs like we do! I am looking forward to spending time getting to know these families.
I hope that we can get the word out and get more families involved! I am excited to see what God has planned for us all!
Till the next time!
Good Night!
All About Us!
- Larry, Samantha, Devon and Isabella
- Adventureous! We are a family that is not only fighting for our childrens health but for a cure! JIA not only affects Devon and Isabella but also our family. It is a journey that we are all choosing to be on together. We alone can not make a better world for her but with the help of family and friends and our GOD, helping them live will help others too. Knowing more about JIA will make us all a little less scared and whole lot closer as a family! Cuz' baby, that is what IT IS ALL about!
Saturday, January 29, 2011
Once Upon the Ortho...
We met our new Orthopaedic Dr. He is wonderful! He sat with Isabella and I and went through the procedure with us. Good news first...The erosion is just begining! They think they have caught this in time and...well....it has to be an and at that because no one really knows how long it will last. We are constantly putting out little fires.
Bad News...Remicade doesn't seem to be helping! This is a discussion for our Rheumy next weekend.
Izzy is scheduled in two weeks for the injections of steroid into the SI joint. They will put her to asleep again and inject both sides. Then we pray.
Today I have started a Support Group here and have people from different states coming for this. I am excited to meet them all yet sad that they too have children that are going through all this too. It will be wonderful to see that maybe I am shedding a little light on this not well lit path for all of us. Just the thought that I maybe helping others is a aspiring feeling to have. Maybe through this we will form friendship and bonds that will help us change the face of JA. Maybe we as a little support group in this tiny town will make a big noise! Yes, I have been watching Horten hears a Who! We are the speck! But we can be HEARD!!!!
Aghhh...to many kid movies!!!!! I love you all and I will let you all know how the meeting went today!
Blessing to all!
Bad News...Remicade doesn't seem to be helping! This is a discussion for our Rheumy next weekend.
Izzy is scheduled in two weeks for the injections of steroid into the SI joint. They will put her to asleep again and inject both sides. Then we pray.
Today I have started a Support Group here and have people from different states coming for this. I am excited to meet them all yet sad that they too have children that are going through all this too. It will be wonderful to see that maybe I am shedding a little light on this not well lit path for all of us. Just the thought that I maybe helping others is a aspiring feeling to have. Maybe through this we will form friendship and bonds that will help us change the face of JA. Maybe we as a little support group in this tiny town will make a big noise! Yes, I have been watching Horten hears a Who! We are the speck! But we can be HEARD!!!!
Aghhh...to many kid movies!!!!! I love you all and I will let you all know how the meeting went today!
Blessing to all!
Thursday, January 27, 2011
This is HARD!!!
I am Terrible at this blog thing! I think I am avoiding it because it is forcing to think about the situation we are in and quit hiding from it. In reality I keep moving and going each day with appointments and pharmacys, and working on something with some foundation. It is not until I am alone in the car at a stop light that I find myself crying and praying. Yes, I now pray at EVERY stop light, thanks to a wonderful woman in my bible study! It is in those rare moments of showing without Izzy that I am allowing myself to bawl like a child. It is the moments when I am ironing Larrys work clothes sometimes wanting to trade places for one day. I sound terrible don't I! Sitting here I am thinking how selfish I am when BOTH my children live in pain. Yes! I said BOTH! Devon has know been diagnosised and this means life is about to get jarred AGAIN!
You see Izzy is simple. She is very intelligant and fearless. She has had alot of stuff happen to her since birth. She as she put it is a"total Rock Star"! Devon on the other hand is the sensitive one. He is ALWAYS the big brother helping out. Now it is him going through this. He is the one I am going to have to hold down just to give him a shot. It is almost primal the way you have to hold him down to get blood taken. Like a mama lion hanging on to her cub by the throat. You know your not hurting him, yet it feels alwful!
Isabella is doing good. Her arthritis is progressing fast. It is now in her jaw, right shoulder, right elbow, both hips, SI joints, knees, ankles, feet, toes, fingers. She is now on Remicade which is making her better right now, BUT has a side effect of possibly getting lymphoma down the road. She is on her weekly injections of Methotrexate and 14 other meds that keep her Asthma under control, help the effects of the MTX, and others to help her system along. Good news is that today her lungs and good and so is her heart! Praise God for the good news!
Devon, Devon, Devon. His first episode was at Halloween. His is affecting his neck, back, knee and fingers. He also has the HLA B27 tissue type which will complicate things all the more. He is on Naproxen right now but needs more. He starts at Childrens next Friday. We will see how that goes!
I have been drowing myself in every aspect of this disease. Reading for hours at night about the disease, meds, and pain relievers. Chemicals in our foods that trigger Autoimmune diseases. I cried one night when I was reading that Larry and fed our children these foods that could possibly do this. Am I going over board? Nope! Not when our children can possibly die from this!
I have been contact with EVERY major foundation their is around the world. Don't mess with mama bear! I am proud to say that the Huntsville Jingle Bell Run 2010 was a HUGE success! Our team, Isabella's Jingling Joints(Devon was not Dx yet) has ranked 14th in the Nation for largest Fundraising Team! WOO Hoo! Love it!
Through all this Larry and I have had a hard time together. Marriage is tough without all these complication now you through all this into the mix and a nuclear bomb went off! In June, Larry left one company and went to another. It is a wonderful job for him! It fits him to the T! The pay is outstanding, the work is constantly moving for him. Now, the insurance stinks! I am on the phone fighting with insurance all the time. So, between fighting them, getting 504 and IEP's(school stuff) Homeschooling info, Doctor appointments, School functions, holidays, trying to find time for everyone and everybody. Life got real hard real fast! But I am happy to say that the weeks after the bomb went off we are a better family. We had our temper tantrum and our selfish moments of us wanting a perfect life changed! We had to stop and accept that THIS is our Life! This is the path that GOd has choosen for us and it is not our job to sit her and figure out why, but to live life now. Live the moments that we were "saving up" for now! To stop and think that a few more minutes in the morning together as a family at the table is what it is about. The Sunday mornings at church with people that love us and has seen us in a really raw time of life and accept us for who we are. To not wait till next year for camping trips, because someone one may not be able to walk. We have to do it now. We have to live now!
See, I tell you this is why I am so bad at blogging! But things are happening fast and I need to do this so that maybe someone out there will read this and want to help find a cure. That is my hope! That someone will read this and know that I am a mother who will not give up and roll over. I am a scrappy little fighter and I am fighting for my children's lives, and for my happy family! To those who don't understand this disease it may seem as though I am overeacting, but believe me I am not! It took 9 miscarriages to get these 2 wonderful children! I am not going to loose what Larry and I have worked so hard for. Somebody out there will hear me! So, if you know a way to tell people about this disease, a friend, a company, a church, tell them! Not just for my kids, but for all these moms who see their kids in pain everyday. For all these kids who go one to ride a bike for 5 minutes even though they hurt. Stand with me, hold hands and together we can make a difference!
You see Izzy is simple. She is very intelligant and fearless. She has had alot of stuff happen to her since birth. She as she put it is a"total Rock Star"! Devon on the other hand is the sensitive one. He is ALWAYS the big brother helping out. Now it is him going through this. He is the one I am going to have to hold down just to give him a shot. It is almost primal the way you have to hold him down to get blood taken. Like a mama lion hanging on to her cub by the throat. You know your not hurting him, yet it feels alwful!
Isabella is doing good. Her arthritis is progressing fast. It is now in her jaw, right shoulder, right elbow, both hips, SI joints, knees, ankles, feet, toes, fingers. She is now on Remicade which is making her better right now, BUT has a side effect of possibly getting lymphoma down the road. She is on her weekly injections of Methotrexate and 14 other meds that keep her Asthma under control, help the effects of the MTX, and others to help her system along. Good news is that today her lungs and good and so is her heart! Praise God for the good news!
Devon, Devon, Devon. His first episode was at Halloween. His is affecting his neck, back, knee and fingers. He also has the HLA B27 tissue type which will complicate things all the more. He is on Naproxen right now but needs more. He starts at Childrens next Friday. We will see how that goes!
I have been drowing myself in every aspect of this disease. Reading for hours at night about the disease, meds, and pain relievers. Chemicals in our foods that trigger Autoimmune diseases. I cried one night when I was reading that Larry and fed our children these foods that could possibly do this. Am I going over board? Nope! Not when our children can possibly die from this!
I have been contact with EVERY major foundation their is around the world. Don't mess with mama bear! I am proud to say that the Huntsville Jingle Bell Run 2010 was a HUGE success! Our team, Isabella's Jingling Joints(Devon was not Dx yet) has ranked 14th in the Nation for largest Fundraising Team! WOO Hoo! Love it!
Through all this Larry and I have had a hard time together. Marriage is tough without all these complication now you through all this into the mix and a nuclear bomb went off! In June, Larry left one company and went to another. It is a wonderful job for him! It fits him to the T! The pay is outstanding, the work is constantly moving for him. Now, the insurance stinks! I am on the phone fighting with insurance all the time. So, between fighting them, getting 504 and IEP's(school stuff) Homeschooling info, Doctor appointments, School functions, holidays, trying to find time for everyone and everybody. Life got real hard real fast! But I am happy to say that the weeks after the bomb went off we are a better family. We had our temper tantrum and our selfish moments of us wanting a perfect life changed! We had to stop and accept that THIS is our Life! This is the path that GOd has choosen for us and it is not our job to sit her and figure out why, but to live life now. Live the moments that we were "saving up" for now! To stop and think that a few more minutes in the morning together as a family at the table is what it is about. The Sunday mornings at church with people that love us and has seen us in a really raw time of life and accept us for who we are. To not wait till next year for camping trips, because someone one may not be able to walk. We have to do it now. We have to live now!
See, I tell you this is why I am so bad at blogging! But things are happening fast and I need to do this so that maybe someone out there will read this and want to help find a cure. That is my hope! That someone will read this and know that I am a mother who will not give up and roll over. I am a scrappy little fighter and I am fighting for my children's lives, and for my happy family! To those who don't understand this disease it may seem as though I am overeacting, but believe me I am not! It took 9 miscarriages to get these 2 wonderful children! I am not going to loose what Larry and I have worked so hard for. Somebody out there will hear me! So, if you know a way to tell people about this disease, a friend, a company, a church, tell them! Not just for my kids, but for all these moms who see their kids in pain everyday. For all these kids who go one to ride a bike for 5 minutes even though they hurt. Stand with me, hold hands and together we can make a difference!
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