"No Evidence of Arthritis"

Today was a big day, a HUGE day for Mia (and for our family). We took Mia to see Dr. Lopez and after examining her joints he told us...

"There is no evidence of arthritis in her body."

Praise God!! We are so completely happy! It has been over a year now since Mia's initial diagnosis of JRA. It has been a long, hard road for all parties involved. Medicines, physical therapy sessions, occupational therapy sessions, leg braces, MRIs, ultrasounds, x-rays, TONS of blood work, TONS of tears (from both daughter and mommy) and now, finally, we are on the other side of things! It feels amazing. More than amazing....it is a dream come true! Our daughter no longer limps, no longer drags her leg when she walks, no longer cries in the middle of the night while she is sleeping. She runs, climbs, jumps and plays like any other child her age. She just finished eight weeks of ballet classes and enjoyed every minute of it. She is blessed. We are blessed!

So, what's up next? Well, her doctor gave us permission to start weaning her off of the naproxen! He said it will take three to six months to wean her off of it because they keep the dosage the same, but don't increase it as Mia gets bigger. So, provided she doesn't have any flare-ups between now and then, we will be able to take her off of the medicine she has been on for over a year now. We will have to keep up with the eye doctor appointments to check for uveitis and pay a visit to see Dr. Lopez three months from now, but that is it! Hooray!!!!

Thank you to everyone who has prayed for Mia and for us. We greatly appreciate you standing with us and believing for our daughter's health to be completely restored.

We have overcome! :)

Back to the Rheumy!

This week is the BIG WEEK! We are heading back to the rheumatologist on Thursday morning for another check-up for Mia. We are believing he will still be impressed with the improvements she has made and maybe, just MAYBE, we can start weaning her off of the naproxen. She has been on it for over a year now - 7.5 mls twice a day.

So, please keep Mia in your prayers this week!! I will post an update on Thursday to let you know what the results are of the appointment. :)

Slowing Down...

As you can tell from the dates of my posts, things are slowing down...with JRA. And we couldn't be happier! We are at a different place now than we were a year ago - physically for Mia; emotionally for us. We are stronger. We have come through a very difficult time for our family. And, we are very, very blessed!

Mia is still on a gluten-free, dairy-free diet. We have added eggs back into her diet (this past July), to which her body doesn't seem to mind. And it makes it MUCH easier for me when it comes to baking and cooking for Mia.

She is still seeing a physical therapist, but only once a month now. She still takes 7.5 mls of naproxen twice a day and 1 tsp. of cod liver oil every morning to help keep her joints loose and keep the inflammation down. In December at her next rheumy appointment, we are hoping Dr. Lopez will say we can start weaning her off of the naproxen. And then we will start adding things back into her diet to see what causes a flare.

Here is an update to give you an idea of how much better Mia is doing:

Comparison of last year to now...starting from head to toe:

• Last year: her elbow was bent at -8 degrees. She would cry or pull away from you if you tried to straighten it.
• Now! Her elbow is almost straight. On her worst day, it is bent at -3 degrees.
  
  
• Last year: her knee was bent at -20 degrees and was as big as a tennis ball. She was dragging her leg and limping all of the time. She could not run, jump and could hardly keep up when walking. People were constantly asking me if she injured her leg or if she fell. It was awful!!
  
• Now! She will be finishing her very first ballet class this Saturday. I almost cried during her very first class...it was hard to hold back the tears. I was SO PROUD!! She can run, jump and dance without any difficulty. She has minimal fluid on her knee, but she does have a boney overgrowth of cartilage on the inside of her knee that has developed from the arthritis. She still can't hyper extend her leg (get her heel off of the ground) when she is sitting down and it is straight out in front of her, but we know that will come in time. She is starting to alternate legs when going up the stairs. We are still working on helping her to get over her fear of going on the climbers at the park, but know she will eventually conquer her fear and not feel like she has to be cautious to protect her joints.
  
  
• Last year: At her initial diagnosis, they said that her ankle had some swelling and fluid on it. One month later, her rheumy said her ankle was fine. :)
• Now! Her ankle is still fine...still no swelling (nor will there be any!)
  
  
• Last year: Her big toe on her right foot was swollen and very large, along with her second toe on her left foot. This is the first thing that alerted us that there was a problem when she was 15 months old.
• Now! Her other toes seem to be catching up to her big toe and it seems to be getting smaller.

Overall, she is doing great!! She is much more active than she was a year ago. It is great to see her so happy. We look back on this past year and are so proud of the things she has overcome. She had to endure a lot, especially in the beginning, and came through it with flying colors. She is looking forward to sledding and building snowmen this winter...what every normal, healthy child enjoys doing. She is tackling life head on, full throttle - leaving JRA in the dust!

Two GOOD Reports!

Well, Mia had her appointment with her rheumy last Thursday and he said everything looks good! He did notice a bit of swelling and inflammation on her left knee still, but very minimal. Also, he was concerned because she still can't hyper-extend her left leg. She can with her right, but not with her left.

So, for now, he wants us to continue on the naproxen and see him in two months from now for another follow-up appointment.

On Friday, Mia went to the eye doctor's again for her every-three-months appointment. The doctor dilated her eyes this time and took a peek all the way in the back and there are no signs of uveitis!! Praise God! :)

That's the latest. We've come a long way and will continue to keep her on the diet until she is off of the naproxen completely. Hooray!! :)

We are continuing with PT and OT (once a month now for both). Also, Mia has an evaluation coming up in the next couple of weeks with our town's public school system to get her transferred over from E.I. to their program. She can only be a part of E.I. until the day before she turns three (which is two months from today!). I've heard great things about their program and am hoping the eval goes great and they accept her so she can receive PT/OT services from them.

GF Rice Crispy Treats!

I get excited when I find new GF-DF treats for Mia and am constantly on "the hunt" for different. Last night, I was out at Trader Joe's and happened upon these little tasties:

I am really excited about them, too, because she has a bunch of parties coming up at school and I don't want her to feel left out! Three cheers for TJ's rice crispy bars!

One Year Later...

Hello! 

I've taken a bit of a break because my parents have been in town with us and we have been quite busy over the last several weeks. Mia got moved up to the next class at school (she is now in the three-year-old's class with her new teacher, Miss Linda). And we've attended birthday parties, gone to the apple orchard and played outside as much as we can because the chilly winter air is right around the corner!

So, we are in our third month now since Mia's last visit with Dr. Lopez and it has been a NICE break...for all of us. We have reduced her PT & OT to once a month and she has been doing great. Mia is now in ballet classes every Saturday morning (which has been approved by both her doctor and her therapists). She is still taking naproxen twice a day (7.5 mls), but no flare ups or inflammation issues!!

We meet with Dr. Lopex next Thursday for a check-up. Three months from THAT appointment, if Mia continues to do as well as she has been doing, he said we can start to wean her off of the naproxen. Hooray!

We have added eggs back into her diet...so far, so good! However, we are waiting on the dairy and the gluten until after she is off of the naproxen completely because it would be hard to tell if either of those things are affecting her while she is on the medicine.

Also, Mia goes back next Friday for another appointment with the eye doctor. This time they will dilate her eyes to get a good look all the way into the back to check for inflammation, which we are believing there will be none of!

All-in-all, it has been a nice break..from everything. It was one year ago this month that she was diagnosed...and it has been a rough year for all of us, but especially for her. I pray we go into the new year a bit better than we did last year. We were completely blindsided by JRA and I am definitely ready to say goodbye to 2008 (for many reasons...more than just JRA). Mia endured a ton of appointments, many therapy sessions, blood work (again and again and again!), an MRI, ultrasounds and x-rays, a leg brace, medicines, iron supplements for anemia, bandage wraps for her elbow, many STIFF (and tearful) mornings, and one horrible flare-up last November. She is no longer dragging her leg or limping when she walks. And her elbow is almost there...bent just a few degrees. She has been running more, jumping more and enjoying life more. Looking back, I am SO GLAD we put her on the diet when we did because I don't think we'd be where we are right now if we didn't. Best decision we made for her!

It is so good to be on the other side of things now. :)

Birthday Parties

Not only does Mia have a birthday party to attend this Saturday for one of her classmates at school, but I was informed earlier this week that two of Mia's classmates are celebrating their birthdays this week at school, as well. Therefore, there will be TWO birthday parties this Thursday and one more on Saturday. Suddenly, I get this sinking feeling in my stomach. Birthday parties means "party food" and "party food" means pizza, ice cream and cake - three things Mia can't have.

Lucky for me, one of Mia's teachers is a friend of mine who informed me what the menu will be: cupcakes at 10:00 a.m. (why anyone would give three year olds cupcakes this early in the morning is beyond me!) and then pizza and MORE cupcakes for lunch. Woah! Can anyone say "sugar overload?" Good luck getting those 20 kids down for naps! Ack!

So, in the attempt to make sure my daughter does not feel left out, I headed out to Whole Foods, hoping to hunt down a GF-DF pizza just for her. I've already made GF-DF cupcakes for her - piece of cake! Heh heh! But, Mia hasn't had pizza in almost a year now. Birthday parties can be a BIG headache for parents who have kids who are on special diets.

However, I struck it rich today! Low and behold, in the frozen foods isle at WF, I discovered these:

Amy's Single Serve Non-Dairy Rice Crust Cheeze Pizza

I quickly snatched up three of them (costing an arm and a leg - about $20) and made one for Mia for dinner tonight to try it out on her before sending it in with her to school tomorrow. She LOOOOVED it! And I almost cried....and then quickly regained my composure after Mia gave me this funny, teenageresque look like, "Mom...what is wrong with you??" LOL! It has been sooo long since she has been able to eat something like that. And I enjoyed every moment of it. Probably more than she did!

Suddenly, I love birthday parties once again. :)

Joint pain...

I received a phone call from Mia's school today. They said she woke up from nap time crying and holding her knees and saying that her knees hurt. So, they held her for a bit and tried to comfort her...and then ended up calling me at work.

She did tell me this morning at breakfast that her knees hurt, but sometimes it is hard to tell with her. I didn't question her about it and probably should have. I didn't physically check her out and I probably should have. She's been doing so well lately. And it is hard when you have to get everybody dressed, fed and out the door so you can get yourself to work. I was a bad mommy today for not paying attention.

She just changed classes from the two-year-old class up to the three-year-old class. So, I have to re-inform her new teachers & aides of her health issues and special diet. It is like starting from the beginning again. And I have been avoiding it. Because I am tired. And some days I wish this was all over with.

Her new teacher was very kind on the phone. She asked what they could do to help and what they should do in the future if she has a flare. I told her I will bring in her rice pack that they use on her during her PT sessions. They can put that on her knee(s) to warm them up after nap time before she jumps back into playtime. I am hoping today was just some mild stiffness from just waking up from her nap (and that this morning's incident was just morning stiffness...nothing more than that!). They said she seems to be doing better, but they were very concerned. It is hard to tell when you aren't there to actually see her and know what is going on. Her teacher told me this class is much more active than Mia's previous class, so perhaps she just overexerted herself today? That's my guess.

Perhaps she is having pain because we've introduced eggs back into her diet? I don't know. Hopefully, she is better when we pick her up from school today.

I stumbled across this picture of her today. She was 3.5 months old here....hard to imagine she will be 3 years old in just a few months. In such a short amount of time she has gone through so much.

Heh heh...I loved this outfit! Her Grammy and Papa bought it for her. It reminds me of something my mother would have put me in. I was always dressed in red. :)

Sweet, sweet baby girl. We love you so much!

Autoimmune Ailments: Suggested Diet Plan

This was given to me by a family nutritionist. The diet plan was created for adults so I modified it a bit to make it more kid-friendly (come on...how many kids are going to eat salmon or sardines?!?!). Also, based upon my research, there were a few items that were included in the diet plan that are on the "No No List" for inflammation. Keep in mind, this is just a suggested meal plan.

Autoimmune Ailments
(Colitis, Crohn’s Disease, Type I Diabetes during onset, Hashimoto’s Thyroiditis, Lupus, Myasthenia Gravis, Rheumatoid Arthritis, Multiple Sclerosis, Scleroderma, Sjogren’s syndrome)

breakfast

• 2-3 omega-3 eggs any style, grilled sweet potato or sweet potato pancakes with maple syrup, strawberry-kiwi iced herbal tea
• Reheated leftover chicken or turkey or other meat, 1 fruit
• Smoked or leftover salmon, sweet potatoes with rosemary, green tea
• 3-4 Tbsp. freshly ground almonds with other nuts and seeds (flaxseeds, pumpkin seeds, dried coconut) and 1 tablespoon maple syrup in food processor, herb tea iced/warm
• Organic almond butter (Maranatha) on a celery stick

lunch and dinner

• Buffalo, turkey burger or lean hamburger with lettuce, tomato and cole slaw. Ketchup, mustard and pickle relish may be used if desired
• Beef stew (Beef, assorted vegetables, wheat-free soup stock, herbs and spices)
• Broiled red snapper with Shiitake mushrooms, steamed broccoli, green salad
• 5-8 ounces broiled salmon, tomato sauce w/oregano, thyme, garlic, grilled vegetables, roasted parsnips, Caesar salad
• 1 free range chicken breast with rosemary, roasted onions or garlic, spinach salad.
• Fillet mignon, baked/grilled sweet potatoes with rosemary and olive oil, steamed asparagus, salad with flaxseed dressing

snacks

• Handful of raw assorted nuts, roasted garlic or almond butter on celery, organic fresh or dried fruit of any kind, Cascadian farm organic Sorbet or fruit pops

beverages

• 8 oz. Fresh mixed vegetable juice 1-2x per day
• Green drinks: Green Magma, Kyogreen, or Green Kamut: 1 tsp. 1-3x day in water
• Herbal Teas: Licorice, Slippery Elm, Chamomile, Ginger
• Spinach Smoothies

eliminate grains
Eliminate wheat and the other three gluten containing grains: oats, barley, and rye. Wheat is found in bread, breadsticks, rolls, cereals, pasta, crackers, cakes, cookies, and most cereals. Avoiding all grains (including rice, millet, amaranth, etc.) for three to six months is recommended if possible as well. Then, after 3-6 months, reintroduce rice and wild rice, millet and other non-glutinous grains to see if the patient can tolerate them.

eliminate dairy products
This includes milk, butter, kefir, cheese, and even soy cheese products containing the milk protein casein. Yogurt may be tolerated in small amounts because the lactic acid in the yogurt denatures the proteins that may be allergenic in other dairy products. Whey protein may be tolerated, as it does not contain casein.

also avoid
Beans, lentils, yeasted foods, blue cheese, tempeh, tofu, soy protein isolate (these soy products contain alpha-gliadin), peanuts, citrus fruits, sugar, alcohol, caffeine, hydrogenated and partially hydrogenated oils, and safflower, sunflower and corn oils

suggestions and goals
The goal is to remove all foods that may be triggering the body to attack its own tissues. Researchers believe that one of the possible causes of autoimmune ailments is certain foods that are new to humanity (grain products, dairy products, lentils and beans, and yeasted foods) which have only appeared in the past 40,000 years. Meats, nuts, vegetables and fruits have been eaten for over 2 million years. Therefore, returning to a diet that is made of meat, nuts, and produce may remove one of the main offending causes behind autoimmune problems. It can take 3-6 months to assess whether this program is effective.

If possible, get a moderate amount of exercise, 20 minutes of sunshine per day, a good nights sleep. Take epsom salt baths 1-2 times per week. Add 4 cups of epsom salts to a warm bath and stay in for 10-15 minutes.

supplements (these are adult dosages...not for kids!!)

• Acidophilus and Bifidobacteria// 1-3 teaspoons of powder (Natren)
• EPA/DHA// 1,000-10,000 mg (1-10 Tbsp. Super Max EPA)
  (approach doses above 5 g/day with close supervision)
• Glutamine// 1-5 grams
• GLA 240// 1-3 capsules
• Flaxseed Oil// 1-3 tablespoons
• Vitamin C// 1-3,000 mg
• Vitamin E// 400 IUs
• Selenium// 200-400 mcg
• N-Acetyl-Glucosamine (NAG)// 300-900 mg
• Bovine cartilage// 9 grams/Twelve 750 mg capsules/day (Vita Carte)
  (use with caution—may overstimulate immune system in some)
• Magnesium// 400-800 mg
• Siberian Ginseng Extract// 50-200 mg of powdered extract or 1-2ml of liquid
• Olive leaf extract// 1-3 capsules per day

rheumatoid arthritis:
Curcuminoids// 400-1,000
Quercetin// 300-900 mg

Those with rheumatoid arthritis should read "The New Arthritis Breakthrough" by Henry Scammell. Highly recommended reading: The Tao of Immunity by Dr. Mark Lappé. Also, "The Maker's Diet" and "Patient Heal Thyself" by Jordan S. Rubin

Saying Our Goodbyes...

We met with Mary today. While it was a good appointment, there is still some areas in Mia's body that need help - her left knee was puffy underneath her kneecap and her right elbow is still very bent. Mia still has a hard time rotating her right arm so that her palm is facing upward. While these are minor things compared to what other children may be dealing with, they are still issues that prohibit Mia each and every day.

However, Mary agreed with Mia's rheumy that she is in a better spot than she was several months ago. SO....we are reducing her PT to once a month, unless she has a flare. Mary said many kids do well and then return later on down the road if there is a flare. If this happens to Mia, Mary said all we need to do is call them up and let them know. Since Mia has already been seen by them and has a history with them, she will be placed at the top of the list to be seen. Mary said this is their protocol for all JRA patients. Which is very nice...and, as a mom and the one who is in charge of and attends all of her appointments, this brings me much relief. But, for now, we are going to hold onto Mary and see her once a month. Her concern (and mine) is that Mia may be affected by the cold weather in the next several months. So, we don't want to discontinue completely in the event that she experiences any pain from the weather, like she has in the past.

So, for now, we said "goodbye" to Mary...until next month. Mia was very sad, but I explained to her that she won't be saying "goodbye" forever...just for a few weeks. So, we have given up our much-coveted, 10:00 a.m. morning slot and now we have to call ahead and just take whatever cancellations they have available.

With the cold weather approaching (*sigh*) and as an alternative to PT, we are going to look into aquatic therapy for Mia for the fall. This will help keep her joints fluid and her rheumy said many JRA patients have benefited from it. The only problem now is finding a pool. I checked with EI and they said they don't offer anything through their program. There are three pools in our area: one is about to close, and the other two don't do pediatrics. However, there is a center in Salem, NH that has a pool. I am going to contact them this week to see if we can get Mia on their list. If I can find a pool for Mia, then we need to contact our insurance company and see if they will cover it because most of the time they will only cover aquatic therapy OR PT. Not both.

In regards to OT, well, the new OT really isn't an OT...she is a PT. And we already have a PT. And while we love the social worker who works with Mia's language skills. frankly, I have NO idea why she has been assigned to have help in her social skills. On her initial eval when Mia was 22 months, she scored at a 26-month-old level in language/speech skills (surprise, surprise!). I think we all know that Mia can talk...and talk WELL! I guess they heard her throw in what they call "jargon" in the middle of her sentences and they consider this to be a speech delay. HA! My daughter has no type of speech delay whatsoever. To be sure, I asked her PT today if she thought Mia had a delay. She laughed, too. She said that Mia's language and cognitive learning skills are where they should be and that definitely does not have a delay. I had to be sure. I am her mother and I can understand EVERYTHING she says, even when it is mixed with "jargon." it is nice to have it confirmed by someone who only sees her once a week.

So, I told Cheryl (social worker), that we want to reduce our services. To which she told me that they, too, can do the once-a-month thing, but that only one therapist can attend. So, I told her, in a way as to not hurt her feelings, that since Mia's diagnosis requires more physical therapy than social, that we would go with Stella.

So, Stella will be visiting once a month. And Mia had to say "goodbye" to Cheryl. I think Cheryl almost cried. She hugged Mia for a very long time. It is hard when a child and a therapist develop a relationship and then have to say "goodbye." It is even hard for the parent(s). Cheryl has been working with Mia for almost a year now! But, Cheryl will remain the service coordinator and when we meet with the public school system next month we she will attend those meetings to help transition Mia over to their program. We are definitely going to continue to pursue getting her in with the public schools because their services are free and, should Mia have a flare, we will have another resource to fall back on.

While Mia is doing very well right now, I need to keep in mind that the JRA is not totally gone. It has not completely left her body yet. To many who know her, she looks fine. But, I know what to look for and what she still struggles with and there is still a battle to fight. I am reminded of those parents whose children had JRA when they were Mia's age and when they were a bit older experienced an unexpected flare which put them back at the beginning again (and on stronger meds the second/third time around). While are a hoping for the best and believing for a good report in October when she returns to the rheumy, we are also reminded that we need to continue fighting until she is completely JRA-free. And she will be...one day! :)

Why People With Arthritis Should Avoid Nightshade Vegetables.

I know I have posted about this before, but I am posting about it again because I have received several emails from JRA families who are inquiring as to what steps we have taken with Mia to improve her quality of life. Besides gluten, dairy and eggs, we also eliminated the "nightshade family" vegetables from her diet, which include:

• potatoes (not sweet potatoes)
• tomatoes
• eggplant
• sweet and hot peppers (including paprika, cayenne pepper and Tabasco sauce)
• ground cherries
• tomatillos and tamarillos
• garden huckleberry and naranjillas
• pepinos and pimentos

Nightshade vegetables are among the foods that some people feel can trigger arthritis flares.

In the next several posts, I will also share the protocols that have helped our daughter, in the hopes these protocols will help other children out there who are suffering from JRA. Children should have a happy, healthy, pain-free childhood. They shouldn't have to wait until they are in their teens to see if they are of the 82% who outgrow their JRA.

No child should wake up in the morning and be in excruciating pain as soon as their feet hit the floor. No child should be on steriods and NSAIDS for a prolonged period of time. And no child should be robbed of a healthy childhood.

Children were designed to live happy, non-restricted lives. They were designed to climb trees, do cartwheels all over their backyard and be in gymnastics and ballet recitals. For this very reason, we decided to go the natural route for our daughter. We were desperate and willing to try anything to help her. And this has worked for us. Granted, everyone's arthritis is different, but isn't it at least worth a try? I think it is.

Overcoming...Again!

Our appointment with Dr. Lopez went very well today. He said Mia still has some stiffness in her right elbow and bony overgrowth in her left knee and right toe. To people who don't know what to look for, she just looks normal to them. But, Jay and I can see it. We know the challenges she has faced and is currently facing and how the arthritis prevents her from doing normal, every day activities. She doesn't run as fast as the other kids. She doesn't take part in physical activities that other children are interested in. She still has trouble walking up and down the stairs. It will take time, but I believe she will live a normal, healthy life.

The bone scan that she had done last month did confirm that her left leg is longer than her right. Which could be the reason why she still has trouble walking or why she walks so slow and it constantly feels like we are pulling her along when she holds onto our hands. Our friends' daughter who was diagnosed with JRA at an early age is the same way. She also walks verrrrry slow because of the arthritis.

Sooooooo.....here's where we are at now:

SIX MONTHS FROM TODAY if she does not have any flare-ups, if her sed rate remains low (below 19) and if there aren't any other issues (uveitis - inflammation in her eyes), then he is going to start to wean her off of the naproxen. Hooray! However, if anything negative occurs during those six months then that just sets her back from getting off of the naproxen.

As far as therapy goes, he left that decision up to us. He said if we stopped it that we had to make sure that we are doing all of the PT at home with her on our own....something neither one of us has much time for. Or, we could just have Early Intervention come to the house once a week like they have been doing and we could cancel our other PT session with Mary. The only thing that is holding me back from canceling with Mary, besides the fact that Mia LOVES her and she is a really great therapist, is the change in weather in the next several months. We've seen how cold temperatures affects Mia's joints and I would hate to cancel with Mary and then have to call her up again should Mia have a flare-up once the fall/winter season is upon us. And who knows if we will even be able to get in with Mary again!! So, we have a lot to consider regarding therapy. I want to talk to Mary and see if we can go down to once a month just for now....so as to not lose our spot with her.

We are going to actively start adding things back into her diet. I am going to try her with the whole egg this Friday (ack!). I don't want to do it tomorrow only because she has to go to school and I would hate for something to occur there where we can't be there to help her. So, I am going to wait until Friday where I will at least be close by should she have any issues.

After that, I think we will try dairy. Ugh. And I'll save those worries for another day.

Today is a good day - she is in a much better place than she was nine months ago. We have much to celebrate!

Up On Deck...

So, "up on deck" for this week is (drum roll, please!) .......

......another trip to see the rheumy.

We head BACK into Boston (the story of our lives...or at least the past 9 months!) this Wednesday for another check-up. Hey, at least they have a great Au Bon Pain across the street. We've made that our official "hang out" place when Mia has those longer appointments or if we need to grab a yummy snack when our meeting with the doc is over. :)

In other news:
Mia had a great session today at PT. Mary said she is looking really good. Her only concerns are the fluid that is still on her left knee and that Mia seems to be rotating her left hip inward when she walks. Mary took measurements again of Mia's left leg (hip to ankle) and of her knee. Mia's left leg is still 1cm longer than her right. That may be the reason why she is turning inward when she walks. Other than that, she said she looks good! She told us to inquire with her rheumy if she still needs PT or not. Wouldn't that be nice!

Foods revisited:
Because Mia's sed rate was so low at the end of May, we have decided that now would be a good time to start trying to add things back into her diet. So, we started with egg whites about a week ago. So far, so good. The only thing I am concerned about is that Mia has had bad diarrhea in the last week or so (again yesterday). I am thinking it is related to the egg whites because it is the only new thing we've added into her diet. So, we shall see. I haven't tried giving her the yolk of the egg yet because if anything is going to cause a flare it will be that. So, perhaps one day, when I am feeling ultra brave, I will offer her the whole egg. We need to figure out this diarrhea thing first, though. Kind of interesting that she has symptoms like this when she is on THREE meds that are VERY binding. Ugh...who knows!

More later on our trip into Boston...

Friday's Checkup

For those who have been keep up with my updates concerning Mia, this past Friday I took her to her three-month checkup with the eye doctor. Her doctor took a peek in her eyes and confirmed, once again, there is absolutely no inflammation in either of her eyes. This is wonderful news!!

We go back in September for another examination.

Unfortunately...

As many of you know, this is my personal journal/log of all the JRA-related events that have occurred with Mia. Yes, I blog about the good things, but, for my own record, I also blog about topics that may not be suitable for those readers who have weak stomachs. So, this is your warning. If you are that type of person (like my husband...heh heh!), then don't read this entry. :)

Yesterday morning, Mia had some blood in her stool. So, I paged the rheumatologist. He has been wondering if she's had G.I. bleeding all along. Her hematocrit level is still low, and this has caused him to wonder "Why the sudden drop when she was doing so great up until now?!?" So, he told me to take her over to her pediatrician's office to have them examine her to rule out if it is a tear (anal fissure) or not. If there isn't a tear, then he wants her to be seen by a G.I. specialist, in which they will probably have to sedate her and take a look inside. Great.

At the ped's office, the doctor (not Mia's regular ped...he was off that day) examined her and said there is a "suspicious area" that was very small, not irritated and the same color as the rest of the surrounding skin. She said it was hard to tell and advised us to wait a day to see if there was more blood. She thinks it would be best if we made the appointment to see the specialist to rule out any G.I. bleeding. This wouldn't hurt, but at the same time I don't want to put her through any unnecessary procedures if we don't have to. :o\

So, we are waiting for the next time she has to go to the bathroom to check to see if there is more blood. And then we will go from there. If it is internal bleeding then we will most likely have to take her off of the naproxen...which is a whole other issue for a whole other blog.

Moving on...

New OT: Ugh...not so sure about this one. She isn't actually an OT either...she is another PT. We already have a PT who Mia loves. We need an OT. Not to mention this new woman doesn't seem to interact with Mia...at all! So, I've voiced my complaint...stay tuned.

Eye Exam: It's that time again. This Friday Mia goes back in to the eye doctor to have them check for uveitis. We are believing for another good report! :)

Current meds/supplements:

• Naproxen (7.5 mls; twice a day)
• Zantac (2 mls; twice a day)
• Ferros Sulfate Elixir (1/2 tsp.; three times a day)
• Cod Liver Oil: (1 tsp.; once a day)

PT got moved to Wednesday this week because Mia has/had laryngitis over the weekend so I had to cancel her appointment on Monday. They wanted to put her on amoxicylin for the laryngitis, but I am waiting this one out. She is on enough meds right now as it is. Why add one more to the mix if we don't need to? Her immune system is already at a weakened state - why make things worse?

So, that's this week in a nutshell. Will update everyone soon on the blood issues.

Not Your Average Gluten-Free Menu!

One of my favorite restaurants out here in the northeast is "Not Your Average Joe's." They have wonderful foccacia bread that you dip in olive oil, parmesean and crushed red pepper flakes. It is very yummy! The atmosphere is very modern and their menu contains a variety unusual and tasty flavors. I have never gotten a bad meal there yet.

Well, one of my dearest friends, Amy, recently told me NYAJ has a GF menu now, and a GF kid's menu at that! You have no idea how thrilled my husband and I are. No idea! We have not been to a restaurant with Mia since she was diagnosed last October because, frankly, why put her through that? Why surround her with things she can't eat and then have to explain to her exactly WHY she can't have those things right now? She's only two-and-a-half. Will she understand? Probably not. And that's not a fun dining experience for her or for us.

And why some people can't understand why we don't dine out as a family right now, we have decided this is what is best for Mia. Not many restaurants have a GF menu. And many GF menus contain dairy or eggs, two other things we are staying away from at this time. We truly believe that being on a GF diet is one of the reasons why Mia is doing so well right now and if that means we need to make some sacrifices by not going to restaurants for the time being then that is what we will do. And it is a small sacrifice to pay for our daughter's health. Yes, we miss going out to restaurants as a family, but I would rather know exactly what is in my daughter's meal so she isn't at risk for a flare-up. We've been down that road before - last November she was at a birthday party and ate a lot of something that she shouldn't have, and the next day should could not walk. Since then, we have been very careful with her diet. We aren't going to make the same mistake twice.

So, three cheers for Amy for this wonderful find! Thank you! Thank you! Thank you! :)

We ARE Overcoming!

Mia had her scan-o-gram done this morning at NEMC. She did a very good job and hardly even cried! We will get the results back in the next day or so.

In other news, we are VERY HAPPY to announce that Mia's sedimentation rate is back down to normal!! When she was initially diagnosed this past October, her sed rate was very high (41), which was one of the indicators that there was inflammation (arthritis) in her body. A normal sed rate is below 19. Mia's sed rate is currently at 15!! Praise God!!!

Dr. Lopez said her range looks great. She still has some fluid on her left knee and in several of her toes and her right elbow isn't as straight as it should be. But, overall, he was very pleased with the progress she has been making. So, we asked him that since her sed rate is back down to normal if she is in "remission" now, but he said "no" because there is still some fluid on the joints and that there is no way to test if arthritis has left the body or not.

Right now, his main concern is that she still has a very low hematocrit level. He told us it is one thing when your iron level is low, but when your hematocrit is low, as well, this is cause for some concern. So, he put her on a prescribed iron supplement three times a day for the next month. He said that putting her on something like a Flintstones multi-vitamin with iron isn't enough because her levels are so low that they need to "jump start" her levels again to help get her to where she needs to be. He was very thrilled to hear she is eating her spinach, though (see "Going Green"). :)

The other thing that was very low was Mia's ferritin levels. She should be at 15 and she was below 5. So, that needs to come back up, too.

After the appointment, he sent us to the lab to have them do more blood work (EIGHT vials!!!) to test for many different things to find out why her levels are so low. Her three stool samples from this past weekend came back negative for G.I. bleeding, but he said that doesn't mean there isn't bleeding in the lining which could be why her levels are so low. The other reason why her levels may be low is because she could have a blood disorder where her red blood cells are attacking one another. So, they are checking into it and we will get those results back soon.

He said she does not have to wear the leg brace right now, but wants us to continue with the naproxen. Since she is still on the naproxen, he also put her on Zantac to help with her stomach lining just in case there is any future G.I. bleeding.

We go back for a follow-up appointment on 7/23/08 where they will check her levels again. All-in-all it was a very good appointment. At the end of the appointment we spoke with him about the communication issues and he said that from here on out we should just call him directly. And to just call him even if we are unsure about something. Despite the communication issues that occurred this past month, he is a very good doctor. Mia really loves him and he is great with her. We also signed a waiver allowing him to email us with any important information. So, from here on out, even if I get a call from the pediatrician instructing us to do something that Dr. Lopez told him to tell us to do, I am still going to call Dr. Lopez to make sure this is what he wants us to do. Better safe than sorry!

Up next: Since her sed rate is normal now, we are going to try to slowly start adding things back into her diet in the next couple of weeks to see if the cause of the inflammation was diet-related. This should be interesting!!

Thank you to everyone who has been praying for Mia (and us). We are seeing God's Word working mightily in her body. And a very special "thank you" to Mia's dear friend, Alizée, who dropped to her knees in her living room this morning and started to pray for her friend! God definitely heard her prayer!! :)

Pomegranate Juice Could Help Fight Arthritis

By Kate Devlin, Medical Correspondent
Last updated: 1:29 AM BST 13/06/2008

A glass of pomegranate juice a day could help fight arthritis, scientists believe.

Studies have shown that extracts of the fruit can reduce inflammation in the body, one of the most common triggers of the disease.

The team behind the study, published in the Journal of Inflammation, believe that pomegranate could have the same effect on humans.

If true, it could point the way to a new treatment which could avoid the side effects of current anti-inflammatory drugs, which can include nausea and bleeding in the stomach.

The scientists, from Case Western Reserve University, in Cleveland, Ohio, gave extracts of the fruit, equivalent to a 175ml tumbler of pomegranate juice, to rabbits.

They then tested the level of activity of certain proteins known to trigger inflammation in the animal's blood.

They found that the pomegranate extracts had inhibited the activity of many of the proteins, some by almost half.

It also raised levels of antioxidants, which can also reduce inflammation, in their blood system.

Previous experiments had shown that in laboratory tests pomegranate extract could reduce inflammation in samples of animal tissue, but it was not known whether the fruit could produce the same effects in living creatures.

The researchers believe that the study indicates that eating pomegranate or drinking the juice of the fruit could have a beneficial impact on arthritis, which affects more than 8 million people in Britain.

Tariq Haqqi, who led the study, said such a treatment could also avoid the side effects that can come with long-term use of current anti-inflammatory drugs.

However, he said that further research was needed on how well the extract is absorbed into the blood stream.

Story from Telegraph News:
http://www.telegraph.co.uk/news/newstopics/politics/health/2116833/Pomegranate-juice-could-help-fight-arthritis.html

Going Green!

Mia's third round of blood tests showed she is still very anemic. And we are still waiting to hear back about the results of the stool samples...

So, since we need to get Mia on an iron supplement immediately, but are looking to go the "natural route," as opposed to giving her a Flintstones vitamins (loaded with sugar and tons of artificial ingredients), we stopped by Whole Foods this past weekend to see if we could find something there. We weren't able to find an "all natural" iron supplement for kids (also a gluten-free, dairy-free, eggless one), so I called our friends, the Antonellis, to see what they recommend. My friend, Georgiann, sent me this great recipe for a spinach smoothie - something she and her family (even the kids!) drink together every other day. Her daughter, Faith, loves it!

Well, low and behold, so does Mia!! I made a huge batch for all of us. My husband loved it so much he asked for seconds! We will definitely be adding this to our evening meal plans (every other night). It is even sweet and tasty enough to spoon feed to an infant. I can't wait to try it out on JJ. :)

I have also started giving Mia rice cereal in the morning which contains a ton of iron (45%). She then takes her calcium at lunch time - you can't take calcium and iron together because the cancel each other out. And then we are doing the spinach smoothies in the evening with dinner.

Anyhoo, here is the recipe for all of you out there who are also in the same boat as we are - fighting JRA the natural way!

FRUIT SMOOTHIES

• 1 banana
• 1 cup carrot juice (Costco & Wal-mart have the cheapest prices on Bolthouse Farms Carrot juice)
• 1 cup other juice (Orange Juice, cranberry, apple juice or grape; grape is the best)
• 2 cups fresh baby spinach already washed
• Frozen strawberries (Costco has beautiful large flash frozen strawberries)
• Frozen blueberries (Costco has a flash frozen blueberry, raspberry and marionberry blend that is wonderful)

Add the first 4 ingredients and blend really well. Then blend equal amounts of blueberries and strawberries adding a little at a time. Keep the blueberries frozen to make the smoothie cool and thick. Defrost the strawberries a little so the blender doesn’t have a hard time mixing. Rich with natural sugars, fiber and antioxidants. One blender full makes enough for a full glass for our whole family.

Can be frozen into popsicles for kids.

So, you see, it is possible to get your kids to eat their spinach! ;o)

Our New Friends!

Here are the pictures of our visit with our new friends, the Antonelli family. Faith, who is a couple years old than Mia, was also diagnosed with JRA at a very year age, as well. It was a very memorable evening with a very wonderful and sweet family (and delicious food...thank you, Georgiann!). I am so grateful that God allowed our paths to cross. We owe so much to this family. They have been a huge encouragement and blessing to us...more than they even know.

We look forward to many more visits with them in the future!

Faith and Mia playing and laughing together.

Faith shows Mia the pictures she
and her sisters made for Mia.

Two new friends. :)

Vacation, A Mysterious Rash, and One Absurd Day.

Well, we were on vacation for two weeks visiting my parents in Michigan. A lot has happened since then and many changes are in the works. Here's a brief summary to get everyone caught up:

1. End of May: This story is a doozy. Brace yourself.

Three urgent messages were left on our voice mail at home from Mia's rheumatologist the day after her appointment with him on 5/26. The last message told us to call the pediatrician's office immediately for more information. Nice...a very urgent and uninformative message! Apparently, something was low in her blood work and he wanted us to take her back in immediately to her pediatrician to have the blood work done all over again and to bring a stool sample with us. Nothing more was said...to us or to the pediatrician's office. After receiving a message like that, we were a bit concerned.

So, I took Mia in immediately the next morning to the pediatrician's office. I left messages all morning for Dr. Lopez. And heard nothing. Finally, I had him paged around 3:00 p.m. to find out what was going on (why couldn't he have just relayed the information to the pediatrician's office?!?!?!) Grrrr! The first thing he asked me was if I had stopped Mia's naproxen yet. WHA??? Well, if someone had left a message for us to do so then we would have. Sorry...just a little frustrated at this point. Now my mind was racing. He proceeds to tell me there is a possibility of Mia having G.I. bleeding from the naproxen (lovely...he just increased her dosage, too) and that the blood work and stool sample would give them a better idea of what is going on.

Great.

Later on that day, the pediatrician's office calls me back and tells me that she doesn't have G.I. bleeding...she is just anemic (or, as Mia says, "ameeemic"). Phew! All that craziness for nothing. So, they are going to give her an iron supplement to help with that. And they told us to continue with the naproxen.

Which brings our story to the present chain of events which occurred this past Thursday.

I was supposed to receive a phone call from Mia's pediatrician's office the week after her initial blood work to discuss an iron supplement for the anemia. Three weeks went by and I didn't hear anything from them. Granted, we went on vacation for two weeks, during which Mommy's mind went on vacation too...especially to those things which were JRA-related. I needed a break!! So, the Thursday after we returned I called her doc's office to inquire. And this is where the story gets VERY absurd...

• The ped. office tells me to start her on an over-the-counter iron supplement.
• They then call me back later to say that the Ped. talked to the Rheum. and he wants to know why we didn't stop the naproxen weeks ago? WHA?!?!?!?!?! We were instructed to continue it after the results came back that she was only anemic and there wasn't any G.I. bleeding and that they would call us to discuss the iron supplement the following week.
• So, now we are being told by the Ped. who is receiving emails from the Rheum. that we are to stop the naproxen immediately and get her on an iron supplement.
• A half-an-hour goes by and I get another call. This time the Rheum. emails the Ped. and says to tell us (OK....WHY CAN'T YOU JUST CALL THE PARENTS DIRECTLY?!?!?!?!) that Mia needs to go in immediately for more blood work and to bring in another stool sample. No further information is given as to WHY we need to bring our child in again for a third round of blood work. Yeah, I was about to blow at this point.
• So, I tell the ped. office that before I bring her in again, I need to speak to the Rheum. to get more information as to WHY she needs to come back in.
  
• I get on the horn with the Rheum. who I have to have paged because "he is 'off site' today." He calls me back. It's not a pretty conversation...so I'll leave it at that. Bottom line, he tells me that Mia's second round of blood work also showed that she still has "lowered hematocrit levels," which means there is still a chance she has G.I. bleeding. Great...we've had her on naproxen for the PAST THREE WEEKS since we were instructed to continue it!!
  
  He then proceeds to tell me they need to do a round of THREE tests in order to rule it out, in which case, we need to bring in THREE stool samples. That's funny, the ped. office told me on the phone that it was just ONE stool sample. And I love how we are hearing about this for the very first time....three weeks after the second round of blood work. At the end of our conversation, I asked him what we are to do about the naproxen and he tells me to keep her on it. OMG! After all of that...after being scolded on the phone because we didn't take her off of it three weeks ago...he tells me to keep her on it.
• So, I took Mia in for the blood work this morning and dropped off round one-of-three of the stool samples. Despite the fact she was not to happy to learn that she was going back in again for more blood work (she is WELL aware now of what that means!), she managed to make light of the situation. I overheard her telling her father that she was going back to see Dr. Maddox and "the beetle!" I told her, "No, Mia. It isn't a beetle. It is a needle!" She tells me, "No Momma...it's a beetle." Too funny!
  
• We have an appt. with the Rheum. on Wednesday (6/25) where we will all sit down together and have a nice heart-to-heart. :)
  

Lesson learned: You are your child's advocate. You are their voice. It doesn't matter if their doctor(s) get annoyed by your phone calls. It doesn't matter if they get impatient when you have them paged when they are "off site" (golfing? hmmm...perhaps.) so you can get to the bottom of things. What matters is that you get the correct and accurate information the FIRST time around.

And to think, we wouldn't have found ANY of this out if I hadn't called to inquire about an iron supplement. Come on people...do your jobs!!

Moving on...

2. Mysterious Rash: Two and a half weeks ago, after wearing her brace to bed one night, Mia woke up with a rash on the inside of her left knee...the joint that is affected. It is right on the spot where she has some boney overgrowth of cartilage due to the JRA. At first I was hoping it was just a heat rash of some sort, but we've put neosporin on it and hydrocortizone and neither one of them have helped. Her rheumatologist and pediatrician have been asking us since her initial diagnosis if Mia has had a rash or fever because those are some of the symptoms of systemic JRA.

I know there are several of you who read my blog who have children with JRA. Have any of your children ever had a rash?!?! Any help or insight would be greatly appreciated. Mia has never had a fever with the rash....just inflamed joints and now this "mystery rash."

Her rheumatologist told me that he believes it is definitely related to the arthritis, but he will know more when he takes a look at it on Wednesday.

3. New OT: I am very sad to announce that Mia's OT, Kelly, will not be able to continue her services. Kelly is due soon with her first child (hooray!!) and has decided to not return to work after the baby is born. Mia will be very sad to find out that Kelly won't be coming to visit her anymore, but we are very happy for Kelly. She was a wonderful OT and Mia loved visiting with her.

On Monday, Mia will be meeting with Stella, her new OT, for the first time. First off, I just want to say that I LOVE her name!! I am hoping she is as fun as her name is! Ha! :) During this meeting, we will be discussing Mia's transfer from Early Intervention into the public school system's services starting in December 2008. Mia will be three-years-old at that point and E.I. does not provide services past the age of three.

4. PT: Mia will still be meeting with Mary on Mondays. Mia LOVES Mary. :) You know your child has a great PT when they go away on vacation and all they can talk about is going to see their physical therapist! :)

5. Overall: We had a great vacation! We got to have dinner one night with our friends, the Antonellis, at their house whose daughter, Faith, had JRA. It was so much fun! They have three adorable, little girls - Grace, Faith and Hope. From the very first moment that Mia met Faith you would have thought they were sisters. These two little girls are so much alike. It was amazing. I just sat and watched them play together and I could have cried - two beautiful little girls with such amazing and bubbly personalities fighting a horrible chronic illness. And it really made me think - I truly believe that God gave both of them their delightful and upbeat personalities for a reason. He knew before they were born what they would face early on and He knew that by giving both of them "merry hearts" it would be like medicine to their bodies (Proverbs 17:22). God's Word is working in Mia's body and in Faith's body! :)

They have such a beautiful and blessed family and it was great to sit and talk with them while the kids played. And JJ loved being around all the girls!! :) I will post pictures soon of our visit with them. We look forward to many more visits and play dates with them when we are in town.

6. Up Next: Mia has her "scan-o-gram" scheduled for next Wednesday morning at 9:00 a.m. She will be meeting with the rheumatoligist afterwards. He spoke with Mia's pediactrician today and said that he believes that the rash is related to the JRA, but won't know until he takes a look at it. Please continue to pray for Mia and agree with us for a good report next Wednesday.

Visit to the Rheumatologist...

So, today we got the kids up waaaay early so we could get Mia into Boston for her 9:00 a.m. appointment. But, getting there early was so worth it because this was the first time EVER that we didn't have to wait for an hour in the waiting room. Apparently, no one makes appointments that early...or at least not today. We were able to go straight to the room and wait for the doctor. Nice!

The doctor took a look at her joints and, while he wasn't as impressed as he was the last time we saw him, he definitely agreed she is better than she has been in the past. Although, he said he didn't like all the fluid and swelling he saw on her joints...specifically her left knee. He said what he always says, "I am greedy. I want her at 100%." Which I had to laugh at this time because he says this EVERY time. In my head I was like, "Yeah, doc! We do, too!!" But I understand what he means...

We also discussed how her left leg is now longer than her right leg. When I told him this, he said, "Are you sure it is her left that is longer? Because back in October it was her right leg that was longer than her left." I told him that is what the PT told us after she took measurements of it...and, from what I can see with my own eyes, her left is definitely longer than her right. So, he had her lay down on the table and he measured her again. Sure enough, her left is longer. So, he wants to see her in four weeks from now and wants her to have a scan-o-gram (ha ha...sorry, I think this term is very humorous!). Basically, all that means is she is going to have another x-ray from her waist down. So, the next time we come in she will have that done first and then we will meet with the doctor. And her Daddy will be going with her for the x-ray because he is much better at it than I am (hey! everyone has their weak points!!). So, hooray. Another looong appointment. We made sure we snagged an early time slot, though! ;)

Right now, he said he didn't want to switch her to a "stronger level of medicine." He never said the "s" word, but Jay and I knew he meant steroids. Instead he increased her naproxen from 5mls twice a day to 7.5mls twice a day to see if that helps...and because she is bigger now than she was several months ago. I was hoping that we'd be able to start weaning her off of it, but I can't complain. At least she isn't on steroids. Thank God!

We brought her brace in with us today because it is completey worn out and the velcro doesn't work anymore. She has worn it to bed every night since she got it in December, but I had her stop wearing it the last month or so because it wasn't doing what it is supposed to do - keep her leg perfectly straight at night while she sleeps. When I would go in her room in the morning, only one strap would be on...if any. So, the doctor had us go back down to the "Brace Shop," which is located in the lowermost parts of the hospital near the boilers in the basement (a very creep place!) and they measured her for a new brace. Her old brace was a size 6, so they gave her a size 10 today because she is now 30 lbs. and almost 3 ft. tall! They said we should get a new brace every six months. Good to know.

She had blood work done today, as well. I could hear her screaming from the waiting room - not fun! She did a good job, though. They are testing for numerous things and we should have the results back soon.

He also wants us to look into water therapy for Mia. We talked about this in the past with her OT and PT, but now it is coming from him. So, we are going to look into getting Mia into another therapy program. But, I am excited about this one because, as the nurse told me today, they have seen huge results from their patients who are under 3 years of age who are involved in water therapy. And I know Mia will just love it.

All-in-all, today's appointment was a good one. And, as always, Mia was a trooper! While I was hoping for a more positive response from the doctor, I can't complain. We are continuing on the same path that we have been on for the last six months and we are standing strong and believing God that this will soon be over for Mia. She isn't going to have to wait until her teenage years to see if the JRA will go away. It is gone now, in Jesus' name!!

And Mia was thrilled about her new brace! She told everyone about it. I mean everyone - the people in elevator, the lady at the front desk, the people in the lobby. So, tonight we will decorate a new brace and put new Charlie and Lola faces on it.

Stay tuned for another good report when we go back to see the doc at the end of June.

PT Update

Well, this week is the week. We head into Boston on Wednesday for another looooong appointment with Mia's rheumatologist. More blood work. More x-rays. More waiting. Please continue to pray for Mia this week. Today in therapy her knee was much more swollen than usual and she was still at -3 degrees (although, this is MUCH better than the -20 degrees she was at several months ago).

Also, there was much resistance in her right arm when Mary tried to get her to do certain exercises today. She has a very hard time straightening her arm out and it is really stiff. This is also affecting how Mia does things with her right hand, like, picking objects up or even simple things like dumping out a cup filled with water. Holding her palm out flat (like when I squeeze soap into her hand) has not been possible yet because her elbow is preventing her from doing what she should be easily able to do.

Aside from all the current challenges she is facing, we are believing for another GOOD report on Wednesday when we meet with the rheumatologist.

Also, please pray for that the length of Mia's legs will even out so they are the same. She wasn't like this several months ago, but her therapist says this is very typical of JRA - usually the leg that is most affected tends to grow faster than the other leg making it more difficult to walk.

That's it for now....more on Wednesday.
Mia's Momma :)

PT Update

Today at therapy...

• Mary noticed that Mia's knee is more swollen than usual.
  
  
• Mia had a very difficult time doing the stairs exercise and refused to go up the stairs using her left leg first. The same thing with coming down the stairs...she refused to go down the stairs using her right leg first. It seemed like her left leg was really bothering her today.
  
  
• Mary applied moist heat to her left leg and massaged her knee which allowed for a better extension, but Mia was still protecting her leg during the exercises.
  
  
• Mary measured Mia's knee today and she is around -3 degrees. At her last appointment with the rheumatologist, he said the goal is not only for Mia's leg to be completely straight, but when she is sitting down with her legs together out in front of her that we should be able to lift her left foot up so that it is off the floor. This is something all kids can do. Mia can do it with her right leg, but not with her left because of how the JRA is effecting her knee.

So, these are the things we need to work on with her...and what we need to pray about. Mia goes back next Wednesday for another appointment with her rheumatologist. This will be a longer appointment because they are going to be doing more blood work and checking for any JRA markers in her blood and checking her sedimentation rate. They will also be checking for traces of mycoplasma in her blood.

Will keep you posted...

Six months later.

So, here we are. Six months later.

As I look back and reflect over the last six months, I can finally be honest - in the beginning, I felt so alone through all of this. Besides having an excellent resource - and now friend - who my mother recommended to me, we were on our own. I had never even heard of JRA before. The next thing you know I am on the phone with the doctor who is telling me about Mia's white blood cell count and sedimentation rate being too high and that her immune system was attacking itself, causing inflammation in her joints. When he said, "She has JRA" I could feel my head spinning. At the time, I had a three-month-old baby at home who needed me every moment of every day and now my little girl would be needing me now more than ever. It was overwhelming.

The last six months have been difficult and challenging. And I've learned a lot along the way. It was especially hard in the beginning. A friend of mine put it this way, "There is a period of grief in the beginning; a season of sadness in knowing that your child is in pain and and has been diagnosed with something horrible. But, after that period of grief passes, and it will pass, you become strong again. And then you begin to fight."

This has stuck with me.

While I know there are many more horrible diseases out there (which I remind myself of every day and count my blessings), it is not fun, nor is it fair, for your child to suffer in any way. A day hasn't gone by where I didn't wish it was me instead of her. I now understand what it means to have a "mother's love."

So, now we are in a new season. More prayer. More research. More education about JRA and how we can get to the root of this auto-immune disease. If you treat the root then the weeds (allergies and sensitivities) disappear. It is our prayer that God will reveal those "hidden things" to us so we can help our daughter overcome JRA and lead a normal and healthy life.

During these last several months of research, there are many things I now wonder about ...and regret. For example, I wish I had educated myself more about breastfeeding. Perhaps I could have prevented her from getting JRA? Apparently, children who are breastfed have a lesser chance of getting JRA. Had I known that beforehand, I would have done it longer. For both my daughter and my son. But, I try not to beat myself up too much about it. :)

Mia is still on a "special diet." Though, as she is getting older now, it is getting harder to explain to her why she can't have what the other kids are eating. And I am sure it will get even more challenging as her brother starts to discover new and different foods. But, I am convinced this diet is what has helped her the most (despite what medical professionals say) and we are sticking with it for now.

Recently, I stumbled upon a couple of articles/blogs that only confirmed what I already knew in regards to the connection between JRA (and RA) and diet. It is encouraging to know there are others out who have tried what we are doing and it has improved their quality of life, as well. Here are some of my recent findings:

• JRAlife.com
• RA Heart Tip: Try Gluten-Free Vegan Diet
• For Rheumatoid Arthritis, Choose a Gluten-Free Vegan Diet
  

As stated in my initial post, the purpose of this blog is a journal for myself - a way for me remain strengthened and encouraged. It is also a way for me to keep my family and friends back home updated with Mia's progress. Six months later, this blog has become a way for me to track what has worked and what didn't work for Mia. Through this journal (and food journal), I can look back and see where she was at several months ago and the challenges she was facing with her joints and what we/her therapists/her doctors did to help ease the pain she was experiencing.

I am also blessed to know this blog has helped others. I greatly appreciate the emails I have received from people who are also going through their own challenging situations. Please know I pray the same prayer for you that I pray for my daughter...

"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)

New Allergy-Friendly Foods for Kids!

Cherrybrook Kitchen has just made my life so much easier. This summer, they will be coming out with a new line of GF, DF and egg-free mini cookies and ready-to-spread frostings - just like good ol' Duncan Hines, but better for you. :)

You can't imagine how excited I am about these new products! Now that Mia is in school twice a week, there are birthday parties and celebrations almost every month. Which means, I have to run out to Whole Foods or Trader Joe's, buy a box of allergy-friendly cake mix ($4-5) and a box of frosting ($6) and whip up a treat that my daughter can enjoy while all of her other friends are eating cupcakes made by a local grocery store (loaded with who knows what in them!) that probably cost $1.99 for a dozen. Grrr.

The biggest challenge with these cake mixes and frostings is I have to substitute a ton of stuff in them so they are "okay" for Mia to eat. I can't just dump the cake mix in a bowl, add the liquid ingredients and then bake it for 12-15 minutes. I have to substitute coconut oil (which looks like Crisco, so I have to melt it before I add it) for vegetable oil, rice milk for regular/soy milk, and if the recipe on the box calls for an egg or two I have to mix up some Ener-G Egg Replacer. Same deal with the frosting. All this for one, perfect, tasty cupcake for her to take to school or a birthday party so she won't feel excluded. Don't get me wrong. I am happy to do it for her and I don't ever want my daughter to feel left out, but it is a lot of work and I'd rather be in bed at 11:00 p.m. at night than playing around with egg substitute in my kitchen to get the batter to just right to make one little cupcake. Now you know why I dread going to birthday parties! Well, for that reason and because Mia is at the age where she is starting to realize she can't eat what everyone else is eating and it makes her very sad. Literally. Try explaining to a 2 1/2 year old why she can't have what all her little friends are having. It's not fun.

So, "thank you" Cherrybrook Kitchen. You've made this Mommy so very happy!

For those parents with kids who have food allergies, check out this awesome newsletter I subscribe to by Kids With Food Allergies. They always have helpful information, recipes, or ideas in their newsletters. Besides the Cherrybrook Kitchen products, they just posted a list of other allergy-friendly foods that are currently available or are about to come out soon. :)

New Tasty GF Treat!

In the effort to find an ice cream substitute for Mia during those hot summer days, I discovered a new tasty GF and DF treat at Trader Joe's - Sharon's Sorbets.

They come in a variety of flavors, too! And they are all natural - no artificial ingredients - and are made with pure, unbleached cane sugar. Also, most sorbets are made with milk, but this one is completely dairy-free. And they are so good and very inexpensive - I believe I paid $1.99 for a pint at TJ's. Not bad!

Mia is very happy with her new "ice cream" treat. Hooray! :)

Speaking of Eyes...

Mia has conjunctivitis! BLEH!

First, our entire household came down with bronchitis. It has taken over a month to get rid of it. Now this. I guess it is pretty contagious. Mia hasn't really been anywhere besides the eye doctor's last Friday. I am assuming this is where she got it. Thanks, doc. Thanks a lot.

I have bleached all of the kids' toys, sprayed Lysol all over the house and gone through several bottles of Clorox Anywhere Spray (my best germ-fighting friend). Guess I need to repeat the whole process once again.

Mia does pretty good about taking medicine (considering what she has been through the last six months), but this is the worst. She has never fought us on taking medicine before, but Jay and I practically have to sit on her to get the ointment in her eyes. There are many tears. I feel so bad for her.

So, stay tuned. This may be our SIXTH week of missing church. Lord help us!!

Checking for Uveitis...

Mia had her third eye appointment today since she was diagnosed six months ago. When we arrived, she already knew the drill - wait for the nurse to call her back, sit on Mommy's lap while the put drops in her eyes to dilate them, head back to the waiting room for 15 minutes to wait for them to dilate, head BACK into the examination room to meet with the doctor to have her look deep into her eyes to check for inflammation (uveitis) and scarring, then head directly to the toy chest in the lobby to pick out a special treat. Mia did great today - much better than she did six months ago. This was the first time we didn't have to hold her down while the doctor looked in her eyes. She sat there very patiently and didn't even fuss! Jay and I were so proud of her.

The doctor reported there isn't any inflammation in her eyes - in the front or in the way back. Also, there isn't any scarring from any past inflammation she may have had. This is all very good news! She said that everything looked perfect! Praise God! :)

She goes back again in July for another check up. She will be going to see the eye doctor every three months until she is 10 years old, or so I have been told. We are believing she won't have to for very much longer. :)

"...but in humility consider others..."

I stumbled upon this site via two different blogs that I read.

I felt I should share it with you...especially with those who pray.

Bring The Rain
(www.audreycaroline.blogspot.com)

When you get a moment, please take time to read through the posts...and pray for this family. It is a heartbreaking story. I can't imagine walking the road this mother has walked.

I pray for strength and peace for them. May they feel God's loving arms holding them close during this difficult time.

Postponed...

Mia's appointment with her rheumatologist was postponed for another three weeks. Apparently, she was supposed to have the chicken pox vaccine three weeks prior to this appointment and we were just told that this morning. Lovely. The reason being is because there are side effects after you get the vaccine (rash and fever) and they need to wait until that subsides before they can do the necessary blood work.

So, after being on the phone all morning with her rheumatolgist and her pediatrician (and my doctor's office because I have to go back AGAIN for this horrible virus I can't seem to kick), she will be getting the vaccine this week and in three weeks we will be heading back for the appointment she was supposed have today.

As I mentioned in a previous post, they will be doing blood work to check Mia's erythrocyte sedimentation rate (ESR), which, at her initial diagnosis, was way too high (40), and her white blood cell count. And, at our request, they will be checking for mycoplasma in her blood. They will also be checking for "markers" to see if Mia will be getting the chicken pox.

You may ask, "So what's the big deal if she gets the chicken pox?" Well, because JRA is an autoimmune disease it has caused Mia's immune system to be at a weakened state. If she got chicken pox it would weaken her immune system even more. So, the doctor is just thinking ahead. He wants to make sure that variable is out of the equation.

So, we wait...some more. As always, I ask that you continue to pray for Mia and for us. Also, please pray for her legs - that the length of her left leg will be the same as her right. This just gives the doctor another reason to suggest steroids because they will slow down the growth of her left leg.

Thank you. :)