JA Meet and Greet!

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!

Secret....

I have a secret.......tell you on monday!!!!

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!

Yes, there will be happier posts!

Thank you!

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!

Rainy Days!

Isabella is MUCH better today! The bruises are gone and she can actually open her mouth WIDER!!!! Now other then a little sore from a rainy day and a busy weekend she is doing awesome!

She has been complaining a little about her knees. I am making another heating pad for her.

So, I am starting another project. I am trying to make MASH (Make Arthritis Stop Hurting)Kit. For every new kid in Alabama(starting small) I am trying to put together a MASH Kit. These includes a BUZZY, heating pad(rice)(I am making these)and Fat Crayons, and Pencil Grips. If you can help in ANY WAY(Donating time to put this together, Supplies or a Dime or two feel free to send it on over. I am feeling this is soemthing I am here to do. My goal this year is to make 100 MASH kits.

All of this in my spare time! HAHAHAHAHAHAHAHA!!!!!!!!!
Love you all,

Predisone Injections.

Isabella had two injections yesterday in each side of her jaw. She is a real strong girl. These were very painful for her yesterday. First, she came out of the anestesia crying. That broke my heart! I had not seen her do that before. Then she couldn't open her mouth too much yesterday. It hurt to eat.

Today, she has a bruise on either side of her face and still aches a little. We hope we don't have to do this very often. We also are hoping that this will stop any type of bone lose and fusion that was going on. The arthritis in her jaw can do alot of damage. We will pray that it will be steady now for the time being.

It was a busy weekend,so she is a little achey this morning. But, she had a wonderful time swimming, playing, BBQing, and playing on the playset Daddy put together for her and Devon.

Devon had a wonderful weekend also! He is hangin with Daddy alot. Out in the garage they build stuff together. Devon built me a nut cracker yesterday. I have got to admit, the kid has a great imagination!

Well, that is it for now. We love you all and hope you all had a great weekend!

Maxiofacial Appt!

Just got word that Isabella will be going this week for her injections. This past week has been tough on her. The cold virus she caught has turned to congestion and a cough. We are doing breathing treatments every 4 hours and her joints have been swollen and feverish this past weekend. Her Doc called last night and we put her on predisone for 3 days to help keep the swelling down and help her lungs. We are going to give Enbrel a few more weeks and if she doesn't improve we will start infusion thereapy. Doc. had told us that Enbrel doesn't usually work on patients with the HLA-B27 tissue type. So, at least we are prepared!

As for the appt, we arrive at 8am and they will put her to sleep then do the injections. It should go well. She will be a little sore but she is a Rock Star!

We started our a team for this years Jingle Bell/run/walk. The team is called Isabella's Jingling Joints. Please join us on our walk! We need to show everyone that we are a united front supporting all the children and adults with Arthritis!

Maxiofacial Appointment

Before I get all involved with the post. I just want to reassure my family and friends that this blog is only seen by those who I have invited. I am in no way going to exploit our family. But, I will be spreading the word about JIA to all those who will listen!

So, with that said. Friday...We took Isabella to see a really great Maxiofacial Doc. He saw the Arthritis in Isabella's jaw. He is following the Rheumatologist concerns. She is scheduled to recieve injections of steroids in her jaw. We are worried aout the imflammation in her jaw, and joint destruction. BUT BEFORE we do that I am researching to see if there is another way we can go.

We are still batteling her virus. She had to have several breathing treatments last night. Congetion, and cough. She is on so much Naproxen that she can't get a real fever. So, outlook for today....Dr's office again!

Virus

Isabella has yet another virus. We have now been to the Dr.s office once a week for the past 3 weeks. Blood works shows it is a virus not bacteria. Thank goodness! We will take any good news! She had woke up with the dry heeves. Now we are on two more meds for the time being. Total-10 meds yesterday! I did have a moment at the Dr. office and thank goodness we have a wonderful team!

We also started our fund raising for our Arthritis walk in november. Isabella's Jingleing Joints is the name of our team. Our goal- to be the biggest team out there! Why? Because it takes a team to survive now! Isabella and Devon touch so many lives now with their smiles and laughter. Our family is growing!

Today, we are also on our way to the Maxo/facial Dr. I will let you know what happens with that!

Well, kids are hungry now, I better go before cereal is all over the floor!:) LOve to you all!

Maxofacial Doctor

We recieved a call yesterday, that we will be going to the Maxofacial Doctor on Friday. That is good so we can try and stop any type of bone loss in her jaws, yet upsetting because that is just ANOTHER drug in system. We are so fustrated. One, I hate these poison drugs that are so toxic to us, yet I am grateful for those very people who have made such a thing in order for Isabella to enjoy life.

I am also sitting here thinking that I am grateful for the fact that Isabella doesn't know life any different then her daily pain. To her this is normal. Sad! But, glad that she is not growing up right now missing how she "used" to feel.

I think that the shock and awe are starting to wear off. Life is starting to feel normal for all of us. The daily phone calls from the pharmacy to remind us our medicine is ready for pick up. It is funny, I used to think that the "Automatic Refill and Reminder" was great! Now, I loath that stupid little man who calls to remind me to pick up the stuff that costs two arms and two legs that also makes Isabella's tummy hurt and her joints better!

I was thinking yesterday how calm I am starting to be. That I think in the past few weeks(it is only been 4 since we got a real diagnosis) that I have read, researched, asked everyone who I thought had so useful information for me, now I am slowly becoming a General in this war!

Up to speed!

Ok, so I am starting our family Wellness page! I will attempt to keep everyone up to speed with everything that we are learning and what we are up to. With all the family needing to know and trying to keep up with the phones calls and who knows what. This will be the easiest way to continue.
What we know. Isabella has JIA(juvenile idiopathic arthritis). She is polyarticular(which means that she has arthritis in more then 5 joints). She also is HLA B27 Positive. This is a huge strike against her for this is rare for a girl, age 4, to have so much sympotoms. HLA B27 is a tissue type tey find in our blood. Many people have this tissue type but only about 10% of those ever get arthritis. Plus of those 10% it is usually males and in their teens. Isabella drew the lucky card!

Isabella has had a Bone Marrow Biopsy done in March at St. Judes. That ruled out all cancer and leukimia as of right now. She has had a MRI of her jaw in May which showes moderate to severe arthritis in her jaw. Very concerning. We are scheduled to see a Maxofaciall Doctor at the University in a couple weeks. We will then be starting injection of steroids in her jaws every few weeks in order to stop anymore bone loss and funtion.

We see a Pulmonlogist, Rheumatologist, Peditrican,and Opthalmologist now every 4-8 weeks. She gets lab work done every 6 weeks. We will be adding a Cardio doc and Neurologist in the next few weeks.

Right now she is on 8 meds daily with 2 injections of Methotrexate and Enbrel every Thursday. She is awesome with the shots! It doen't even phase her anymore. We don't make a big deal out of it. We do it and done! Off we go!

She still has pain. The meds right now are not at 100% We are to give it a few more weeks and then we will probably start infusions of Remicade.

What we are possibly facing. Complications of these toxic meds( i.e. organ failure, cancer, death) Complication from JIA (blindness, unable to walk, inflamation to her eyes, lungs, brain, and joints) The list goes on and on.

BLAH!!!!! I hate writing that!

We are keeping all this as lite as possible around the kids. Devon is wonderful at helping out and cheering her up when she is down. After the injections she is not feeling the best for a few days and he will watch movies with her and just hang out!

Ok, this is the just of it. I have kept the emotions out of this one inorder to fit it all in and get you all up to speed. I can't promise I can do the same from here on out!:)

Our amazing daughter! Our Journey has begun!

Hello to you all! It has been a really long time since I have wrote.

I am writing today to start a blog about our families strength, fustration, and love for each other. Oh, and should I also say about being a mom. Nobody ever tells you how much it hurts when you have a sick child.

Once your child is born and you have that sick feeling and the feeling when you want to smack the Dr. across the face for grabbing your child out of you like a wet rag, while your thinking it is the most fargile life ever born. Or when your sitting on the porch and your child skins their knees and they get up and say "I am fine mom".

Children are not so fragile. Yes, they are our wonderful gifts from God! But as for strength, I wish I was only half as strong as our daughter Isabella.

Isabella is going through life right now with Arthritis. She is 3 years old and has more pain during the day then I can remember. Although I feel stressed, freaked out, saddened to see her in pain. SHe on the other hand moves through life fearless. A wonderful role model for me.
She waits out the pain in tears for awhile then in a matter of time she is jumping, running, climbong while see can.

Our family is stronger then ever and everyone, even Devon our 5 year old pitches in through out the day. Devon is an amazing big brother. Yes, they have their moments of the typical brother and sister. But he helps her more then I can believe a 5 year old can.

This will be my outlet. Our happienss, our dissapointments, and yep....a little venting!!!

The kids are getting up right now, so I will write more later.