Friday, February 4, 2011

Febuary Rheumatology!

Izzy is not lasting for 6 weeks in between infusions so our Rheumy has put her back down to every 4 weeks. We are going to stay on this for a little while longer. Next, will be Humira. I was informed that that one is VERY painful for her so I am holding out for that one. Her Methotrexate also got increased today. She was not very informative to the Dr. today. She just hasn't been herself lately. I am hoping her labs come out ok. They take blood beofre every infusion to make sure there is no abnormailities. The Doctor discussed the results from the last MRI and told me that there was little inflamation in the jaw but wants to hold out a little longer before the next injection to that joint. The SI joint will get and injection this week and hopefully ward inflamation there for a while. Her hips and look good so the limping is from the SI joint.

Devon-now he stressed me out today! He doesn't do well with dr.s to begin with now you add all this and he gets scared! I am too! Dr. saw that the naproxen has brought down the fluid in his knee. Yeah! They are starting him on Physical Therapy for some strengthining in his back. We are doing a week of steroids, then Methotrexate in the liquid form, and naproxen. We are also doing a work up with Allergy and Immunology to see why he is always sick. Waiting for the Diagnosis for a while to see what all these tests come back as and in June he has a MRI's done. His weight is inthe 3% for his age and we need to see why he is not gaining. He eats like crazy!

Devon was so upset about his blood draw. He kept telling me to tel them no. I told him it was my job as a mom to take care of him and he asked why I want to hurt him. I know he is only 6 and doesn't understand all this. If only he knew how I hurt to see both of them go through all this and to know that I wish they didn't have to do this!

At least I am good with him for a few months at the Rheumy. Now, Immunology should be REAL FUN with him! These kids are going through so much! They are just amazing to me! I love them so much!

Saturday, January 29, 2011

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!


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 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!!!! 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

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!

Monday, July 12, 2010

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,

Tuesday, July 6, 2010

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!

Wednesday, June 30, 2010

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!

Monday, June 28, 2010

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!