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! :)

MRI Day.

Today, we headed into Boston for Mia's MRI. We arrived early and she went in with the doctors around 10:45 a.m. Only one parent could go in with her, so Jay was the designated parent - totally prepared for the task of getting Mia to cooperate. I knew Jay would be the one to go in with her - they have become a team over the last year. Daddy goes in with her for all of her not-so-fun appointments - shots, having blood drawn, ultrasounds, xrays, etc. He has a way with her that calms her down, allowing the doctors to do their jobs.

Everything went well. She fought them in the beginning, but was soon asleep and then Jay returned with a very tear-soaked, little lamb that she had been holding - the one she also falls asleep with at night. So, Jay, "Baa," and I headed over to get a cup of coffee (my preferred "breakfast" these days) and a breakfast sandwich for Jay, since he is not a coffee drinker. Baa had the fruit cup. :)

Then we went back to the waiting room and waited and waited and waited some more. Finally, around 1:15 p.m. they wheeled Mia out and met us in the hall. It is so strange to see your child asleep like that - it is a very disturbing and unpleasant feeling. We followed the doctors as they pushed her bed up to the recovery floor and there we waited for an hour for her to wake up. When she finally stirred, she immediately wanted to take her oxygen mask off and rip out her i.v., but we got her to calm down and the nurse let her sit in my lap while she guzzled a cup of apple juice and watched "Dora the Explorer," one of our least favorite cartoons, but Mia didn't seem to mind. The nurses liked her so much that they gave her a Dora doll - yippee! :)

It was a very successful day. She did an amazing job (as always)! We should get the results back in the next couple of days and we are believing for a GOOD REPORT!

Now that this is past us, I can finally focus on Christmas. We are really looking forward to the week of Christmas and for a short break from appointments and doctors visits. She does have one PT session next week, but that is it. It will be nice for the four of us to be home and enjoying the holidays together - in peace and quiet! I am REALLY looking forward to it!

Please pray!

Mia is scheduled to have an MRI tomorrow morning on her right ankle and foot. The appointment is at 10:30 a.m., but she has to be there at 9:30 a.m. to be prepped for the procedure. Also, she can not have anything to eat after midnight tonight and can have clear liquids up until 7:30 a.m. tomorrow morning. Well, Mia usually doesn't wake up until 8:30 a.m. so I am hoping that we can get her dressed and in the car without any hassles. We can be in the room with her while they are prepping her, but we have to leave while the procedure is being done. She will be in there for at least an hour....and then in recovery afterwards.

Please pray for complete peace for Mia (and for us!) tomorrow. We are believing for an excellent report!!

Mia enjoying her first time sledding
12.13.07

Accomplishments!

Mia does not do tunnels! You know, the long, fun tunnels that kids love to climb in and out of. Yeah, those ones! She has never liked them. Her PT and I think it is because she is afraid to crawl on her knees for fear that it might hurt. It is her way of protecting herself.

Well, today, after swinging on the swing for a long time, pumping her legs back and forth, and then running up and down the matted ramps 50 million times without any hesitations, Mia turns to Mary and says, "Tunnel? Tunnel?" Mary and I looked at each other completely shocked. Several weeks ago, we tried to get Mia to go through the tunnel. When we got it out she looked interested and tried to position herself in front of the entrance to go inside, but then gave up and told us, "No! No! NO!!" We figured it was because she was protecting her joints. So, we were quite shocked when she asked if Mary would get it out today.

So, we set it up and put a ton of balls inside and Mia immediately got down on her hands and knees and crawled back and forth, passing balls to both Mary and myself, and laughing hysterically the entire time! We just stared with our mouths open. Mary said several times today how great Mia looks - from her squatting to her running - but this topped everything! Today was a VERY good session and we are very proud of her recent accomplishment!

This week: Mia has an MRI scheduled this Wednesday to get a better look at her right ankle. We are believing God for an excellent report and that her rheumatologist will be completely amazed at how well Mia is doing!

Vaccinations...

Well, here is the latest update! Yesterday at PT, Mia's therapist said that if she continues with the way she has been going for several consecutive weeks (with no flare-ups) that we will be able to change her PT from twice a week to once a week! She has been very impressed with the way Mia is progressing. Last Thursday she was not limping during her session and she did all great on all of her exercises. She really enjoys playing with the putty and the beans and doing the balance beam. She is really doing great with the stretches and the massage therapy sessions, too. She sits so still as the therapist works on her joints. I think she is starting to understand that they are there to help her. She still has some inflammation on her knee, here elbow, and her ankle, but overall we have seen HUGE improvements from the diet change, the PT and OT, the meds, and PRAYER!

Today was Mia's two-year check-up at the doctor's. We spoke with him about opting out for the flu shot and he agreed. Also, we asked him what vaccinations we could wait on for her given the current condition of her immune system and he said that she isn't due for any vaccinations until she is ready for kindergarten. PHEW! I was concerned the vaccinations might cause a flare-up and I want Mia to have a good week because it is her second birthday on Saturday! I really appreciate Mia's pediatrician. Every time I leave his office he makes me feel better as a parent and he is always very supportive of what we are doing with Mia. He told us that if Mia was his child he would be doing the exact same thing right now. He wants us to continue with her diet change for at least six months and then we can start adding things back into her diet to see what is causing the inflammation and pain. He said there is no harm in what we are doing and that everyone could benefit from being on a diet like what Mia is on. While he was happy with what we are doing with Mia's diet, he also wants her to start seeing a pediatric nutritionist after the new year to see if there is anything else that would be beneficial for her right now.

Brace update! Mia has been doing GREAT with the leg brace at night. The first two nights she cried before she went to bed about wearing it, but she slept through the night with it on just fine. Now, we can put it on her and she isn't bothered by it one bit! She never wakes up in the middle of the night from it and it really seems to be helping her. I have noticed that her knee is quite hot in the morning and there is a bit more fluid around the knee, but that is probably because it has been straight all night long and her body is adjusting to that.

I am VERY proud of my Mia! Every day she continues to amaze me! With all the doctor's appointments and therapy sessions, she never has a fit and handles everything just fine! God blessed Mia with the bubbly personality that she has - she is always so smiley and so friendly at her appointments. Her latest thing is to "chat it up" with the elderly people in the waiting room at her PT sessions, which they just love! Jay and I are truly blessed to be her parents!

Another good report!

Mia received ANOTHER good report on Thursday while at PT. Her Thursday therapist, Kathy, measured Mia's leg and arm again and said her arm is straight and her leg is almost straight. Now we just need that swelling to go down in several of her joints and she will be they way God created her to be...a normal, healthy little girl without any complications or hindrances in her body. She is definitely a MUCH happier little girl!

So much has changed in our lives over the past two months. Sure, being parents of two isn't an easy feat, but it is nothing compared to watching your daughter struggle over the last several months and feeling so completely helpless. I was just saying to my husband tonight, as we look through our October pictures of Mia the week before she was diagnosed, how we had no clue what we were in for. Even the day of her appointment...I was so frazzled just getting her into Boston for the appointment that I think I sat there frozen for what seemed like an eternity as the doctor told us what was going on with Mia's body and how her immune system is attacking itself and causing great pain for Mia. That had to be one of the saddest days of my life. No one likes to hear bad news, but especially bad news about your child. It was (and still is) a very hard thing to get through. There are days where I feel strong and days where I feel totally winded, like a huge wave keeps knocking me over and over and over.

Tonight at dinner, as I made yet another gluten-free, dairy-free, eggless meal for my daughter, my husband and I talked about how much it just stinks that everything happened to Mia right around the age where she would have started enjoying a ton of fun, toddler-type meals (mac and cheese, spaghetti, birthday cake, Christmas cookies, etc.). And while a small wave started to build up to come crashing over me, I quickly repressed it by saying, "But she WILL get to enjoy those things. Maybe not right now, but someday she will!" I can't WAIT for the day when I can take Mia to McDonald's for a happy meal! :)

Things to pray for: Mia has an MRI scheduled for 12/19 at NEMC for her ankle. Please pray for her (and us) that day that everything goes smoothly, that the doctors have wisdom, and for peace for Mia as she will be put to sleep for the procedure.

Thank you to all of our friends and family who have emailed or called. We greatly appreciate the words of encouragement, support and prayers. There is nothing like family and we love you all very much!

Healthy rewards!

It is Thursday (*sigh*). We have almost made it through another week! We took Mia back to NEMC to get her brace and last night was her first time wearing it. We spent about a half-an-hour before bed getting her "warmed up" to the idea of this new contraption that she will be wearing on her leg every night while she sleeps. I realized she was going to need a little bit more than just verbal persuasion. So, I got the idea to get out a marker and color on the brace and make it look fun and pretty for her...and less scary. So, we drew a picture of a sun, a flower, a butterfly, hearts, AND her favorite cartoon characters, Charlie and Lola (www.charlieandlola.com).

She calmed down a bit, but still wasn't totally convinced. So, my husband said the phrase that I am sure all parents say at some point when they are desperate - "If you wear the brace all night long and don't take it off, Daddy will get you a special treat!" After that, there were some tears still and at one point she said to me, "Momma, take it off!" However, she finally calmed down and went right to sleep and did not take the brace off. I had to go in this morning at 8:45 a.m to wake her up and was very pleased to see that she had slept through the entire night and did not take the brace off once. The brace is velcro, but I don't think she knows how easy it is to get it off. Hopefully, she won't ever find out!

So, to make the day a little bit more pleasant for her, I decided to do a trial run of her cupcakes that I will be making next week for her birthday. Originally, I had planned to just go off of her diet for one day and let her have a regular cupcake on her birthday...that was until she had a flare-up a week and a half ago. She woke up in the morning and could not walk. We believe it was a result of something she ate the day before that caused her joints to stiffen, creating incredible pain which prevented her from walking. So, after that scary incident, I decided to play it safe and stick to her gluten-free, dairy-free, egg-free diet by making "special cupcakes" for her birthday. A friend of mine recommended the Cherrybrook Kitchen Chocolate Cake Mix. So, I tried it yesterday and it was fabulous! Even my husband ate an entire cupcake! For the cake mix I substituted the vegetable oil for coconut oil and I used gluten-free vanilla extract instead of regular vanilla extract. For frosting, I used the Cherrybrook Kitchen Vanilla Frosting Mix - it was very good! However, I DO NOT recommend trying to make cream cheese frosting by substituting Toffutti's Better Than Cream Cheese for regular cream cheese - it tasted and looked like Elmer's Glue! BLEH!

Mia LOVED her cupcake! It was a special treat for her and something I can take to other birthday parties as a healthy and safe alternative to regular cupcakes.

A Good Report!

Mia and I just returned from her Monday morning physical therapy appointment. Her PT, Mary, was quite impressed with Mia's progress. When Mia began PT back in October her left knee was bent at -20 degrees (a normal knee is at 0 degrees). In November, they measured her again and she was at -10 degrees. Today she is at -5 degrees! Praise God! Her PT was VERY excited and told us to continue doing what we have been doing (PRAYER, diet change, and NSAIDs*) with Mia because it is obviously helping.

Also, her right elbow was bent at -8 degrees. When she measured Mia today she said she was "practically straight." This is HUGE!

While we are thrilled and encouraged about these good reports, Mia still needs prayer for her right ankle. It was very swollen today and you could actually see the ball of fluid sitting on top of her ankle. Mary did some massage therapy on her ankle to work out the pocket of fluid as best as she could. She also told us to keep an eye on Mia's hips. She noticed something isn't right when Mia walks and that her gait is off. However, we know Mia is healed and just as her knee and elbow are straightening out, we know that the rest of her joints will as well. Mia's joints and tissues and IMMUNE SYSTEM will function the way God created them to with NO MALFUNCTIONS or DISEASE!

I am a very proud mommy. My little girl is handling everything so well....even the teaspoon of cod liver oil that she drinks every morning. She is healed, healthy and whole in Jesus' name. :)

*nonsteroidal anti-inflammatory drugs

A few bumps along the way...

So, this morning could have started out a bit better than it did. After getting both babies ready for church and out the door, we finally arrived at the House of the Lord. I was soooo in need of some time with God today. So, I rushed around and got Mia in her class and then brought JJ downstairs with me to the sanctuary to hang out until he started to get fussy. Just as I started to spill my heart out to the Lord, my pager from the nursery went off. It was Mia...there were "issues" in the nursery and "fires" to put out. After everything settled down, I took JJ (who was now fast asleep) back downstairs to the sanctuary. I had been in the middle of a very deep convo with God and I wanted to continue where I had left off. I was in service for five minutes when my pager for the nursery made a loud beeping noise, which usually means you have a faulty pager. So, I trekked back up to the nursery with JJ to exchange my pager. That's when it happened. Just as I was leaving, Mia tripped and fell and wacked her head on a wooden rocking chair. Then the purple and blue egg-shaped bump began to appear. I knew at that point there was nothing I could do but remove Mia from the nursery and take her back downstairs with me. So, my time with God was cut short today. There was no point in me staying and hanging out downstairs with two babies who both needed my attention at the same time. So, I loaded the kids back into the car and headed home. Perhaps next Sunday I shall talk to God from home. :)

Aside from a very crazy morning, Mia had a good day today. Which is good because she has a very busy week ahead of her. She has PT on Monday, OT on Tuesday, Wednesday we are back at NEMC to get her knee fitted for the brace she will need to wear at night, and more PT on Thursday. Needless to say, I am looking forward to Friday and hope it gets here quickly! :)

Our Confession

Mia Grace

“My Grace”

Our Confessions for Mia:

“He's your bodyguard, shielding every bone;

not even a finger gets broken.”

Psalm 34:20

“Your body will glow with health,

your very bones will vibrate with life!”

Proverbs 3:8 (Msg.)

“It shall be health to your nerves and sinews,

and marrow and moistening to your bones.”

Proverbs 3:8 (Amp.)

“This is what the Sovereign Lord says to these bones:

‘I will make breath [a] enter you, and you will come to life’.”

Ezekiel 37:5 (New International Version)

“’But I will restore you to health and heal your wounds,’ declares the Lord…”

Jeremiah 30:17 (NIV)

“For He has fortified your gates against all enemies and blessed your children.”

Psalm 147:13

He who began a good work in MIA will continue until the day of Jesus Christ – developing that good work and perfecting and bringing it to FULL completion in MIA’s body.

Philippians 1:6

You have given MIA abundant life. As your Word is spoken, life flows into

EVERY JOINT, TISSUE AND BONE of Mia’s body bringing healing and health.

John 10:10

Through Your Word, You have imparted life to MIA.

That life restores her body with every breath she breathes.

John 6:63

He sent His Word and healed MIA and delivered her from all destruction.

Psalm 107:20

…Himself took MIA’s infirmities and bore her sickness.

Matthew 8:17

…by His stripes, MIA was healed.

Isaiah 53:5

…for I will contend with him who contends with you and I will give safety to MIA and ease her.

Isaiah 49:25

I proclaim healing over MIA GRACE DEL TURCO. By Jesus’ stripes she was healed. The healing, life-giving, disease-destroying power of God is working in her body. It drives out all manner of sickness and disease. She is full of life, health, strength, and vitality. She is healed, healthy and whole from the top of her head to the soles of her feet. Every JOINT, TISSUE AND BONE in her body operates and functions the way God created it, with no disease or malfunctions. Every system in her body operates and functions with supernatural efficiency. Jesus Himself bore all sickness and disease; therefore, sickness and disease are not allowed to exist in MIA’s body.

She is free from juvenile rheumatoid arthritis.

The divine life of God flows through MIA, quickening and making alive her mortal body. She is free from pain, discomfort, distress, and all symptoms of sickness. God’s Word is medicine to her flesh. We are not moved by how she feels, how she walks, or any negative reports because we believe God’s Word and His Word says
MIA GRACE DEL TURCO is healed! She is healed, healthy and whole in Jesus’ name.

The diagnosis.

This is my first of many posts. Instead of emailing everyone (or intending to email everyone once I get a break from my very busy life), I have decided to create a blog to keep everyone updated on Mia's progress. The other purpose for this blog is to keep myself strengthened and encouraged.

So, let's start at the beginning. We’ve been noticing since Mia started walking this past June she has been limping on her left leg and it has been getting worse…to the point where she cries sometimes when she takes a step with her left leg. Back in October, her pediatrician recommended that we see a pediatric rheumatologist at New England Medical Center. So, we made an appointment and spent the entire day at NEMC where we met with a wonderful doctor - Dr. Lopez. Not only did he notice the swelling on her left knee and that she can not straighten her leg, but he also noticed that she has stiffness and swelling on her right ankle and her right elbow. He diagnosed her with Juvenile Rheumatoid Arthritis (JRA) - pauciarticular JRA to be more specific. JRA is an autoimmune disease, meaning that white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain. At that point our minds were spinning. How could this happen? Why did this happen? What now? What is the next step?

So, they did more x-rays, ultrasounds and lab work. The ultrasound showed there is fluid on all of the joints affected by the arthritis, but even more on her right ankle, her left knee, her right elbow and both of her wrists. Mia was quite the little trooper through it all (I just wish we had known we were going to be there all day…I would have brought more snacks!).

Some of you may recall we took Mia to NEMC back in March to have them look at her big toe on her right foot because it was swollen. They diagnosed her with macrodactyly, a disease that causes digits on your feet/hands to grow faster and larger than they should. However, they believe now that the cause of the swelling on her toe is a result of JRA. The doctor also wanted us to get her eyes checked immediately because JRA can cause a disease in the eyes called uveitis (an inflammation in the iris) which they say can lead to blindness. It is more common in girls than in boys. Mia had her eyes checked immediately, and PRAISE GOD, there isn't any inflammation (nor will there be!). She will need to have an eye exam every three months until she is 10 years old.

In addition to this, the doctor said she will need physical and occupational therapy three times a week and be on an anti-inflammatory meds twice a day. So, she started physical therapy immediately and she has been going for over a month now and she just started occupational therapy this week. She has PT twice a week and OT once a week. Her therapists are such wonderful and sweet people...Mia really enjoys spending time with them.

The day before Thanksgiving we took her back to NEMC for a follow-up appointment with the rheumatologist. Their main concern right now is her left knee and how it is hindering her from walking properly. So, next Wednesday we have to go back into Boston to have her fitted for a brace that she will have to wear while she sleeps at night. He said if they don't see some progress from the brace, the PT and OT, and from the meds that she will have to start steroid treatments in January. This is where my husband and I don't agree with the doctor. We think he should give the brace more than just a month to do its job (and Mia some time to get used to it). The steroid he wants to put her on is called methotrexate...and it has horrible side effects, such as hair loss, mouth sores, infertility, and it stunts your growth. So, we will discuss all of this with him the next time we meet and let him know where we stand with the steroid treatments.

Through it all, Mia has been such a trooper. After talking with a friend, whose daughter was diagnosed with the same horrific disease when she was 15 months old and is now JRA-free, we decided to try the same approach they took and we have eliminated gluten, dairy and eggs from Mia's diet. We did have her tested for food allergies and while the tests came back negative (which is a good thing!), it doesn't mean that those foods are beneficial to her joints or her immune system (JRA is a result of a weakened immune system which is attacking itself). So, after a month of being on a VERY healthy and restricted diet, we have seen GREAT improvement in Mia's joints. She has had one flare up which prohibited her from walking, which we believe was cause from eating something that wasn't apart of her diet plan, but so far she is doing great. Needless to say, I am a regular now at Trader Joe's and Whole Foods. :)

Please keep her in your prayers. We know that Mia is the healed of the Lord…from the top of her head to the soles of her feet! Despite the doctors’ reports, we know that our God is greater and that Mia’s joints function and move without any hindrance or pain!!