Facing the Giants!

Today was a big day for our family. My eldest baby (yes, "baby" because she is ONLY two years old and, in my eyes, she is still my baby) started her first day of school today. Luckily for me, I got the majority of my tears out the night before, so the "waterworks" were minimal today. After all was said and done, I made my husband immediately drive me to the nearest Starbucks - so I could drown my sorrows in a Grande Peppermint Mocha. ;o)

Mia did great! She loved wearing her Charlie and Lola backpack and refused to take it off when we got into the car to go to school. But, I promised she could put it back on when we got to school, so that made things much better.

The picture I have posted of her is my favorite one of the series of pictures we took (and we took a lot!). She looks so small entering the school, but she looks like such a "big girl" with her backpack on. I also love that you can see my shadow and Jay's shadow on either side of her. And I love the saying on the back of the wall in the lobby - "Facing the Giants." Mia has had many "giants" to overcome over the past few months and she has done a tremendous job along the way. And we know God is with her wherever she goes and through whatever "giants" she may face. His angels are constantly camped around her, which is comforting to me as her mother. God is there when I can't be there - protecting her joints, always!

I think my biggest concern for her right now is flare-ups. She hasn't had one since the end of November (praise God!). It was her first and, hopefully, her last. The other day I read an awesome scripture which I am standing on for Mia concerning flare-ups - "Affliction will not rise up a second time" Nahum 1:9 (Amplified Bible). That is what we are believing - that Mia will never again wake up in the morning and not be able to walk. I will admit, when I can tell she is stiff in the morning, I hold my breath as I put her down on the floor to have her walk down the hall to the bathroom. But, I quickly remind myself of God's promise - "Affliction will not rise up a second time!" Thank God for His promises and constant protection that surrounds our children.

In other news, I moved around her PT and OT appointments so her schedule won't conflict with the days she is at school. Mia has a great bunch of therapists who she loves. We are blessed to have such wonderful people working with her. Her OT is working on getting her into an aquatic program soon, which will be great for her joints. The benefits of this type of program will help maintain and increase Mia's range of motion/flexibility and strengthen her joints, while reducing pain. And I am sure Mia will love going to "swimming class."

Last, but not least. Many of you have inquired as to how Mia's recent follow-up appointment went with her rheumatologist. We met with her doctor this past Tuesday. Of course, doctors NEVER tell you how pleased they are with a patients progress. Mia's doctor examined her joints and her two swollen toes and said that she is still not "100%" and that we need to continue with what he has prescribed for her to do (Naproxen twice a day and continue wearing the brace at night on her left leg). He wants to see her again in one month from now to discuss steroid injections and oral steroids treatments. We shared with him how we are apprehensive about the steroids - not just because of the side-effects, but because she will have to be put to sleep each time they do an injection. He said, "Let's wait a month and see how she is and then we will discuss steroid treatments."

So, that's the latest. If we decide against the treatments, he is concerned that down the road, say, when Mia is five-years-old, we will regret having decided against the steroids should the JRA return. But, we are believing over the next month we will see TOTAL and COMPLETE improvement in Mia's immune system and in EVERY joint in Mia's body. Swollen toes included.

Thank you to all of our friends and family for your prayers and continued support. We are blessed to have such awesome people in our lives. We love you all very much!

Lastly, thank you to Georgiann. I can not begin to tell you how blessed I am to have you in my life. If it hadn't been for your initial phone call, out of ignorance about JRA, we probably would have just followed what Mia's doctors were telling us to do and Mia would be on steroids right now. I am so thankful for this God-ordained relationship and for all the phone conversations and emails. It is so good to have someone who can relate. Your advice, insight and prayers are an encouragement to me and to my family. God bless you!

PT Update

"God is in the midst of her, she shall not be moved; God will help her right early [at the dawn of the morning]" Psalm 46:5 (Amp.).

Today at PT, Mary noticed that Mia has been walking and running crooked. She is taking normal steps with her right leg and shorter steps with her left leg - either to protect it or because she is in pain. Mary took some time to stretch and massage Mia's left knee and right elbow...Mia cried several times during the stretches. Also, her big toe on her right foot was very hot today...the swelling hasn't gone down in almost a year now and now her second toe on her left foot is also swollen. Also, her elbow seems to be a bit worse - not as straight as it was a month ago. It could be a result of the VERY cold weather we have been experiencing, but whatever it is, we need her to be back where she was a month ago because one week from tomorrow we head back into Boston to meet with Dr. Lopez (rheumatologist) and Dr. Yassir (orthopedist).

Mia's rheumatologist wants to start her on a steroid called methotrexate, a drug used to treat certain types of cancer. Here is a list of some of the serious side effects of methotrexate:

• dry cough, shortness of breath;
• diarrhea, vomiting, white patches or sores inside your mouth or on your lips;
• blood in your urine or stools;
• urinating less than usual or not at all;
• fever, chills, body aches, flu symptoms;
• sore throat and headache with a severe blistering, peeling, and red skin rash;
• pale skin, easy bruising or bleeding, weakness; or
• nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).

Less serious side effects may include:

• nausea, vomiting, upset stomach;
• dizziness, tired feeling;
• headache;
• bleeding of your gums; or
• blurred vision.

To me, side effects are side effects, whether great or small. No child should have to experience ANY side effects like the ones listed above. Mia is going through enough right now - she doesn't need to deal with additional issues on top of everything else she is dealing with.

So, please keep Mia in your prayers this week. I am just doing protein and fruits and veggies for her this week to see if that helps. And spending a lot of time praying. We are believing she is going to "wow" her doctors next week with the progress she has made.

P.S. Mia's PT measured the length of her legs yesterday. In some cases, the leg that is effected the most by JRA tends to grow faster than the other leg, causing a child to limp or walk crooked. Mia's legs are the same length. Praise God!

Bottoms up!

Today marks a three-month anniversary...of giving Mia Naproxen twice a day every day to reduce the inflammation in her joints. In honor of this new daily requirement, last night I walked into our family room where my husband and daughter sat together on the couch watching a "mo mo" (what Mia calls a "movie") and I walked over to my husband and got ready to give him a dose of naproxen instead of giving it to my daughter. So shoot me - I am quite tired these days and should not be held responsible for the crazy things I do! My husband just started laughing and said, "Please tell me you weren't serious," after I sat down and realized what I had just attempted to do. I laughed. He laughed. Mia laughed. I laughed some more. What a memory!

No Cold Medicine For Kids Under 2: FDA

For all of you parents out there...take time to read this! You could save your child's life!

No cold medicine for kids under 2: FDA

Alternative Methods to Treating a Child's Cold:
1. Soup
2. Fluids
3. Rest
4. Vaporizer
5. Hugs and kisses

This just proves it is safer to "go natural" than to just follow your doctor's orders. Our family knows this firsthand!

Love,
Mia and JJ's Mommy

Today...I am determined.

"The Lord does not in any degree leave me helpless, nor forsake me, nor let me down!" (Hebrews 13:5, AMP).

Today, I am determined. Granted, I don't feel like this every day - some days I feel overwhelmed and saddened by the battle my daughter is facing (physical and spiritual). But most days I do. Today? I am more determined than ever.

Over the last month, Mia has been doing great. We have seen huge improvements in her joints and the inflammation and fluid has greatly reduced. However, today at PT, Mary noticed that Mia is limping again and that her elbow is back to a -5 and her knee has more fluid on it than usual. Her knee has gone from a -2 back to a -5 degrees. While this doesn't seem like much, every little degree counts with Mia. Mary did say that it could be caused from the weather. She said that patients with JRA seem to be worse during a weather change or major storm (we are getting about a foot of snow today). She said it has a lot to do with the barometric pressure during a storm. Mary also has concerns about Mia's hips and wants us to keep a close eye on them. Also, Mia's big toe on her right foot, which has remained the same size for the last 10 months, is starting to turn inward (they call it "bowing").

So, these are things we will continue to pray for. I told Mary that Mia has been waking up in the morning and after naps just crying for no apparent reason - perhaps it is because she is in pain? Mary agreed. So, she wants us to start back up with wrapping Mia's arm in an ace bandage for 20 minutes each day to get a good stretch out of it (the tendons around the joint are starting to harden) and she wants Mia to focus on taking GIANT steps with her legs. This will help to straighten Mia's left knee and get a good stretch out of the tendons and ligaments around the joint.

Mia has an important check-up with her rheumatologist in Boston on January 29th. At that point she will be almost off of the Naproxen and at this appointment the doctor will want to discuss the next step he thinks we should take to help improve Mia's quality of life. Steroids. Ugh! My goal is to do everything we possibly can to improve Mia's joints - even those last few degrees - so that he is amazed at the progress she is making and hopefully tells us to continue with what we have been doing instead of doing steroids. Otherwise, we will have to go in with our fists up because Jay and I both agree that we don't want Mia to go that route.

So, today I am determined. I am determined to be sensitive to the voice of the Holy Spirit that He will guide me and direct me in the path I should go for Mia. I am determined to fight this disease with everything within me. I am determined to have a daughter who is free from pain. I am determined to have a normal life for my little girl. I have eliminated everything that is harmful to her from her diet and I am racking my brain to try to figure out if there is anything that I haven't done yet or tried. One thought I had was to switch her yogurt from Stoneyfield's YoBaby to the O'Soy. Our family nutritionist said that the lactobacillus acidophilus in the yogurt is beneficial for Mia and that it should not hurt her, but at this point I am willing to try anything. Perhaps that is what she needs in order to get her elbow and knee at 0 degrees (perfectly straight!)?

In the meantime, a friend of mine whose daughter also had JRA told me that she taught her daughter to say, "JRA go away....go away in Jesus' name!" That's Mia's new confession, as well.

Praise Report: Mia had her check-up at the eye doctor's last Friday and they found no inflammation in her eyes! Praise God!

Q & A

You have questions. I have answers. Many of you have asked me or inquired as to why I have put Mia on a gluten-free diet and what does gluten have to do with arthritis? A gluten-free diet is not just for those individuals who have been diagnosed with celiac disease. It is now being discovered that gluten, a protein found in wheat and other grass-related grains, such as rye and barley, is being linked to some autoimmune disorders (like JRA), Crohn's disease, irritable bowel syndrome, multiple sclerosis, and autism, to name a few. You would really be amazed to discover how much of what you eat effects your body.

Since my daughters diagnosis of JRA back in October, I have done a good amount of research on the disease and on autoimmune disorders and what we, as her parents and her "earthly protectors," can do to reduce the inflammation and fluid that the doctors have found on almost all of her joints (some are more affected than others). Here is an excellent article that describes the link between gluten and inflammation:

"When the body senses an invasion of any kind, it responds to eliminate the problem. The gluten protein molecules found in wheat are simply not digested well by humans. People who are gluten-sensitive develop an immunological reaction to these molecules that then start to inflame and destroy tissues in the body. Normal tissues become damaged, preventing growth and regeneration. In celiac disease, it is the intestinal villi that first become damaged and flattened. But there are many chronic health conditions that have an inflammatory component. Unfortunately, the inflammations caused by ingesting the gluten found in wheat, rye, and barley are rarely considered to be the cause. All too often, your doctor prescribes a medicine rather than a gluten-free diet.

Researchers now know that gluten can cause inflammation in any organ and any cell of your body. Inflammation of the heart can cause shortness of breath or fluid retention, and it is now recognized that inflammation is an important contributor to heart disease. Inflammation of the kidneys may cause kidney failure or high blood pressure. Inflammation of the large intestine may cause cramps and diarrhea. The term arthritis literally means inflammation (itis) of the joint (arthr). Cerebral inflammation is often the cause of unexplained headaches and ataxia. Inflammation of the nervous system contributes to such conditions as neuropathy, epilepsy, and dementia. All of these medical conditions (and others) can be directly related to ingesting gluten." - Food Philosopher.com

Mia's rheumatologist did not want us to change Mia's diet. However, Jay and I felt differently. We knew that was one of the first steps we would need to take in order to see results, aside from standing on God's Word and on what He says over Mia's body. We had peace about it, so we followed after peace. And now, three months later, we have seen huge results. Mia's physical therapists ask me every time I bring her in for a session if I am still continuing with "her diet" - they can't believe the results they are seeing! When Mia started physical therapy back in October, she was limping very noticeably when she walked and her left knee was swollen like a tennis ball. Now, her knee is almost straight (we are believing God for those last two degrees!) and her left arm is straight. All glory to God!

The Root of the Problem:
What many people don't know is that JRA is an autoimmune disease. The genes people inherit contribute to their susceptibility for developing an autoimmune disease. There are two general immune system issues in an autoimmune disease. Poor cellular communication because there is a lack of cell markers on the cell walls. And an over-activated, out of balance immune system that attacks those cells. Mia's situation is the latter. Basically, Mia's immune system is attacking itself, causing an exaggerated inflammatory response in her joints. For all of you visual learners out there, here is a picture of what a normal, healthy joint and a joint with JRA looks like:




I am thankful to God that we discovered everything early on with Mia. Even though the swelling has gone down, there is a build up of hardened cartilage on the inside of her left knee which looks like a bulge of fluid, but it is actually bone mass. Also, the MRI results, which I FINALLY received, showed that she does have fluid still on several joints in her right ankle and some hardening of the tendons and ligaments around the joints. All of her toes have fluid on joints, some greater than others.

So, now you have some answers! We are continuing to stand to see Mia's body restored to complete health. This is going to be a GREAT year in the Del Turco household...filled with amazing miracles!

Glad Tidings of Great Joy!

Happy New Year!

Just wanted to give you all a quick update on how Mia has been doing. We are still waiting on the results of her MRI that she had two weeks ago. Some absentminded nurse called our house and left a message saying, "Yes, the MRI results do show that Mia DOES have arthritis!" First off, WELL DUH! We know that! Secondly, aren't nurses NOT supposed to leave confidential information on answering machines?!? Who is this lady? I want to speak to her boss, STAT! :)

So, I called back and am still waiting for the doctor to contact me and let us know what the next step is. Mia goes in to have her eyes examined again in the next week or so to check for uveitis (inflammation in the eyes). And she has an appointment near the end of the month with the rheumatologist again...to decide if steroids are the next step for Mia. We are believing she won't have to be on steroids. She has been doing great on her diet and has been taking her teaspoon of cod liver oil every day and we are seeing huge results. Her physical therapists are now saying that it looks like we may be able to reduce her sessions from twice a week to once a week. That would be wonderful - she would only have PT once a week and OT once a week! Yeah! :)

This month she is supposed to stop taking the Naproxen. It was a temporary fix...not something she can be on for the rest of her life. So, please be praying that she won't have any flare-ups after she stops taking it. Jay and I are interested to see if we are able to keep the inflammation and joint pain controlled by diet alone. Hopefully, that will work and her body will adjust to not being on the medicine anymore.

Well, that is the latest report! I hope all of you had a wonderful holiday season! We sure did! :)