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!

Friday, June 25, 2010


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!

Wednesday, June 23, 2010

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!

Tuesday, June 22, 2010

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!:)