GF, Kid-friendly Food!

Mia's favorite thing to eat is chicken. Since she was a wee tot, Mia always preferred chicken over any other food. She will even ask to eat chicken for breakfast!

However, lately she has become a bit picky about what is placed before her at mealtime. While Mia's diet is a bit limited right now, I try to get creative with what she can eat. She will eat the GF chicken noodle soup I make for her (gluten-free chicken broth, with rice pasta, carrots, celery, chicken, onion and a pinch of parsley). Recently, I discovered that she loves my GF veggie meatloaf (I substitute the bread crumbs for gluten-free waffles that I toast and then blend in the food processor). And, of course, she will eat my chicken cutlets (which I bread with ground up rice crackers) and serve with sweet potato fries (white potatoes are a "no no"). I make most of Mia's food from scratch because not all GF foods in the grocery store are dairy-free and egg-free, too.

So, I need to come up with some other creative food options for her - especially for the days she goes to school. Toddlers can be very picky - one day they love it and the next day they don't! So, I need to send in something with her that I know she is going to eat. Otherwise, they just end up sending it back home to me. And then I wonder to myself, "Well, if she didn't eat lunch, then what DID she eat all day long? Nothing?"

So, I've been trying to come up with new and creative food choices for my little girl.

Last night, while making my weekly trip to Whole Foods to pick up food/snacks for Mia, I happened upon a wonderful, kid-friendly treat - Gluten Free Chicken Nuggets by Wellshire Farms. And they are dinosaur-shaped, too!


You have no idea how excited I was to find this awesome treat! For months I have been making EVERYTHING from scratch - staying up late at night after the kids go to bed preparing food for Mia...and making extra so I can freeze it and have it on-hand when she needs it.

Some of you may think, "Big deal...they are just chicken nuggets!" Well, when you can't pop into McDonald's for a happy meal like so many parents do, GF chicken nuggets are a big deal.

I am so excited about my new discovery! I am going to have her try them out at lunch today...hopefully, she likes them! If she does, this will definitely cut down my time in the kitchen late at night!

Waiting.

"Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good" (Romans 8:26-28, The Message Bible).

We are still waiting. Standing strong, but still waiting. Some days, it feels like we are in mid-air, flying in a holding pattern. Mia has made much progress since October, but what is the next step? Stop her meds next month? Continue her special diet? For how long? Start adding things back in to her diet and see what happens? Am I ready for that and for what may happen? I don't know. So, we are waiting on God for the next step.

However, even in the midst of our "waiting period," God continues to lift us up and encourage us - even at our lowest moments.

Yesterday, Mia met with her OT again. The therapist comes to the church once a week where Mia is in the nursery across the hall from my office. Mia had a great session and did very well with her exercises. At the end of the session, her therapist said to me, "I have a question...and it is not related to Mia's session." She proceeded to ask me about our church and what we believe. I saw the open door and began to tell her all about our church and what we believe and about having a personal relationship with God. She has two teenage daughters at home and seemed very open to everything I was telling her. It was an awesome opportunity to be able to share with her.

After the session, I got to thinking...maybe God has a purpose for this waiting period? I don't think it is an accident that these three therapist have been "assigned" to Mia. Perhaps God has another plan that I hadn't even considered. :)

In the midst of our darkest moments, God always has a way of working the situation into something good. Sometimes, waiting isn't so bad after all.

Goodbye. Hello!

So, you may be wondering to yourself, "Wow! What happened to Dana's other totally awesome layout?" Well, after perusing through several blog forums yesterday, I discovered that the old layout I had chosen is being referred to as the "poop brown" layout amongst other bloggers. Lovely. This news came as a total shock to me when I found out I was not considered "cool" in the blogging world.

In the hopes that none of those skilled bloggers ever saw my layout (which I once liked, but now look upon with total disgust because of the name it is being associated with), I stopped everything I was doing and made the necessary adjustments.

So,"goodbye old" and "hello new." I hope you enjoy the new look. :)

OT Update

Mia's therapist, Kelly, came to our house today for Mia's appointment. Mia is so comfortable with Kelly. She let Kelly go through all the stretches and exercises without very much resistance. She still needs some help getting her right palm to be completely straight when she has it facing upward. But, her knee is looking good and Mia was running all over the place and bending down and squatting just fine today. Kelly was amazed.

The session lasted longer than usual and cut into nap time, so Mia was exhausted by the time Kelly left. As a treat, after nap time we went over to visit Mia & JJ's great grandparents and we had dinner over there with my super cute niece, Isabella, and my husband's aunt, Judi. It was so much fun...a nice break from a long day. And the great grandparents had a blast having dinner with their three great grandchildren.

PT Update

It is Monday again. So, off we went for our morning appointment with Mary. :)

Today was much better than last week. Mia is starting to initiate activities with her left leg. Up until now, she would only go up the stairs or step over objects with her right leg first. Today was the first time that she started alternating legs...sometimes starting off with her left leg first. This is major progress.

As I have mentioned in previous blogs, bad habits have been formed as a result of the JRA. Mainly, because Mia is protecting her joints. Several months ago, she could hardly put any weight on her left leg when she was standing...now she can squat down evenly on both legs and she can lift her leg up to step over things. Praise God!

The Next Step: Mary wants to focus more attention on Mia's elbow as it is still not straight. She did a couple of stretches on her today, but Mia cried and pulled away and told Mary, "NO!" So, we will continue to work on her right elbow some more.

Happiness and Relief...

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

Today was so much better than yesterday. A totally different day for Mia (despite that she kept asking for hugs all morning long because she now knows now where we are going when we say Dr. Lopez's name in the house).

We met with the pediatric rheumatologist at NEMC this morning. He took a look at Mia's joints and was very pleased with what he saw (this was the first time he has said this to us). Her knee was a totally different knee than yesterday - minimal resistance, minimal fluid. When he pressed her leg flat to the table she was sitting on, the back of her knee was ALMOST touching the table - the best he has seen her knee so far. Also, her big toe on her left foot seems to be slimming down. He said it may take some time for it to even out and look normal again, but it is on its way.

So, for now he wants us to continue with what we have been doing (5 ML of Naproxen twice a day, knee brace at night, weekly PT & OT, at-home PT). He never mentioned anything about steroids (praise God!). He wants to see her again in two months from now. At that appointment they are going to do more blood work (MOM ALERT = BRING LOADS OF SNACKS!). They need to check her sedimentation rate*, which was quite high at her initial diagnosis (41). Also, per our request, he is going to have her checked for mycoplasma antibodies in her blood caused from consuming organic whole milk (one of my major regrets!). To put it in simple terms, mycoplasma is a bacteria that masks itself as arthritis and it may be the cause of many horrible diseases (i.e. auto-immune diseases, cancer, lupus to name a few). It infects females four times more than males. And it could be the cause of inflammation in Mia's body. Either way, we need to have her tested for it so we can rule it out.

We are so pleased with this good news today. When we got to the car, I cried...out of happiness and relief. To some, JRA may seem like no big deal. But it is a big deal when you have seen your child struggle to walk, when you have seen her drag her leg, when you have heard her let out cries in her sleep, and when you have seen her tears from the pain of morning stiffness. No parent wants to see their child in any amount of pain - great or small. It has been a long four months...for all of us. And I am so grateful to God that she is better than she was several months ago. To God be all the glory!

Thank you all for your prayers and words of encouragement. Your prayers are working! And it means a lot to us.

* Erythrocyte Sedimentation Rate Test. An erythrocyte sedimentation rate (ESR or sed rate) measures how fast red blood cells (erythrocytes) fall to the bottom of a fine glass tube that is filled with the patient's blood. The higher the sed rate the greater the inflammation. In addition to rheumatoid arthritis, the sed rate can be high in many conditions ranging from infection to inflammation to tumors. The test is used, then, not for diagnosis, but to help determine how serious the condition is.

PT Update

Today's session was disappointing.

Mia would not let Mary do hardly any massages or stretches. That is not like Mia. Normally, she will sit there for at least 20 minutes and play with the toys while Mary applies moist heat and does some massage therapy to her leg, elbow and ankle. Not today. Every time we tried, Mia would pull away and cry...like she used to do four months ago. At one point during some exercises on her knee, Mia said "Ouch!" and refused to let Mary work on her leg any more. So, Mary didn't want to push her because, obviously, she is in pain. Needless to say, we've had better sessions than the one we had today.

She also has more fluid than normal on her knee again. There is a pocket of fluid below her patella (quite squishy to the touch) and her knee is larger than normal. For the last month or so, we were able to see the definition in Mia's kneecap. But, today it just looked big and puffy again. I think Mary was as disappointed as I was! We've seen Mia's joints better than they were today.

Tonight's assignment: get that fluid down as much as possible before she meets with the rheumatologist tomorrow morning. While we are to continue with our at-home massage therapy on her joints, Mary wants us to focus more on her mobility before tomorrow's appointment. Mia's knee is bent again and doing simple exercises like marching and getting her knees up really high or kicking a ball to help fully extend her left knee will not only help straighten it, but it will also help reduce the fluid.

So, I am a bit bummed.

And I have a lot to pray about.

I was really hoping to "wow" the doctor tomorrow. I am still believing she will have 100% improvement before tomorrow's appointment. And I am praying that tomorrow's storm doesn't add to any pain she may already be experiencing.

Our next steps: We are going to get a pH balance test to check Mia's alkaline level to see if her body is too acidic. A pH of 7.365 is the ideal environment in which micro-organisms remain in harmony with the body. When the body becomes too acidic it interferes with life itself, leaving the body open to virtually all sickness and disease. The main reason why a body becomes too acidic is the WRONG foods are consumed - primarily, refined sugars and refined carbohydrates (gluten). There are several signs of long-term acidity in the body - arthritis being one of them. Basically, it comes down to this: when you increase your tissue acid with an acidic lifestyle and diet you increase your pain. When you decrease your tissue acid with an alkaline lifestyle and diet you decrease your pain. So, once we do the test we will be able to see if Mia's body is more acidic than it should be. If it is, then we will take the proper steps to help neutralize the acidity in her body.

Please pray: for wisdom for Jay and myself as we meet with the doctor tomorrow. He is going to want to discuss steroid treatments again tomorrow, which we plan to turn down. Also, please pray that we will know what the next step is for Mia's treatment - we have several options we are considering at the moment.

"I guide you in the way of wisdom and lead you along straight paths" (Proverbs 4:11, NIV).

"So now you can pick out what's true and fair, find all the good trails! Lady Wisdom will be your close friend, and Brother Knowledge your pleasant companion. Good Sense will scout ahead for danger, Insight will keep an eye out for you. They'll keep you from making wrong turns, or following the bad directions" (Proverbs 9-10, The Message Bible).

Today: Part II

In the midst of difficulties or challenging moments, God always finds a way to encourage you, lift you up and get you focused on the bigger picture:

"The battle for our children's lives is waged on our knees. When we don't pray, it's like sitting on the sidelines watching our children in a war zone getting shot at from every angle. When we do pray, we're in the battle alongside them, appropriating God's power on their behalf."
- Stormie Omartian

Despite the day's events, Mia was doing a bit better this evening. I thank God for His healing power that flows through her body...healing every joint, tissue and ligament and restoring her immune system back to its normal state.

Today: Part I

I am glad this week is almost over. Me and my two wee ones have been sick for the last week or so due to horrible viral infections. My wonderful husband, who helped nurse everyone back to health, was luckily spared of this long-lasting sickness. Thank you, Jay, for taking such good care of all of us!

Therefore, because Mia was sick this past week, I had to cancel her PT (which I hate doing because she really needs it right now). However, she was semi-well enough to go to her OT appointment on Wednesday. Her OT, Kelly, noticed she is limping again, so she did some exercises with her, but didn't want to push Mia too hard. Despite the challenges, Mia had a good session.

Today's forecast: more snow. And a lot of it. As pretty and peaceful as it looks floating effortlessly from the sky, I can not help but wish for warmer weather. Not only because it means it is time for "gardening season," but because warmer weather means "happy joints" for Mia.

Around lunch time today, Mia was complaining that her knee hurt. This is actually the very FIRST time she has vocalized her pain, besides crying or pulling her arm or leg away from you when you try to look at it or massage it. That has been one of the major challenges for me and my husband - she hasn't been able to tell us if she is in pain or not. We have just had to guess if she was in pain based upon long periods of crying for no reason after she wakes up in the morning or after a nap or when we examine her joints to see if they are swollen or hot to the touch. During a flare-up, her left knee and right elbow will get very warm - warmer than her other joints. So, that is all we have had to go by. As much as I hate to see her in any kind of pain, it was almost a relief for me to hear her say, "Knee hurts!"

So, during lunch, she kept grabbing her knee and then crying and asking me to hug her. Needless to say, she didn't eat much. After a little bit, she told me she wanted to go to bed. So, I carried her upstairs and when we got to the top I told her to walk to her room for me. That's when I noticed she is having a very hard time walking again. Then she started to cry and wanted me to hold her. After I prayed with her, she went right to sleep. I am hoping a good, long nap will help her joints.

Now my mind is racing. Maybe it is the weather? Or maybe because we ran out of cod liver oil and she missed taking it for four days because I had to order more? Or perhaps it is because she fell really hard this morning in the family room? Then again it could be diet-related (I caved and allowed her to have ketchup last night with dinner which I am now regretting)? Or maybe it is because flare-ups usually occur after a viral infection? Whatever it is, I am just praying that she wakes up from her nap pain-free.

Tuesday we head back to Boston to visit her rheumatologist for, yet, another looooong appointment. Four weeks ago, he took a look at her joints and said for us to continue with what we have been doing and that he wanted to see her in a month to discuss steroid treatments (oral steroids and corticosteroids injections into her joints - a procedure she will have to be put to sleep for during each injection). While the injections will probably provide her with welcomed relief from pain, there are many horrible side effects - one of them being that the injections weaken or "thin" the bones. When this happens, it increases the chances of having that bone(s) break.

In my opinion, I think he is waiting for us to cave in and give him the "okay" to load her up with steroid treatments. Mia has come a long way since her initial diagnosis four months ago - so much so that anyone who saw Mia for the very first time right now might not think anything is wrong with her. Her knee, which was the size of a tennis ball back in October, has drastically decreased. While there is some work left to be done, she is getting there. Slowly, but surely.

Hold on...Mia is crying.

I am back - Mia woke up crying 45 minutes into her nap. She is still complaining of pain and would not let me look at her elbow or knee.

Will post more later...

This Will Change Your Life!

A friend of mine sent me an email today about a recent program she saw by Dr. Don Colbert on Kenneth Copeland's program concerning the links between diet and inflammation in the body (auto-immune diseases) and I just had to share. This just confirms everything we have been doing with Mia for the last several months. It is good to know we are on the right path!

http://www.bvov.tv/kcm/webcasts.php

Listen to the Thursday, February 14th message - it will change your life!

Valentines GF Baking: 101

Today, Mia has her very first Valentine's Day party at school. I don't know who is more excited about the day's festivities, me or her! So, in order to make my daughter feel "normal" and not singled out, I talked to her teachers to find out what things I could make for Mia that they would be serving at the party. Here are a few things Mia's "personal chef" whipped up:

GF Heart-shaped Cupcakes:










GF Chocolate-frosted Cupcakes (regular and heart-shaped):










GF Heart-shaped Sugar Cookies:









I am proud of myself. And I don't think Mia will have any problems "fitting in." She can have her own treats and everything else that is being provided...minus the cheese curls. :)

Phew! So, I am up really late and need to go to bed. But, I can't help but wonder, "What am I going to do for the next major holiday party?" Eh, I won't think about that today...I'll think about that tomorrow. Sweet slumber is calling my name...

Happy Valentine's Day to all...and to all a goodnight!

PT Update

Hooray for crazy, cold New England weather!

First off, I had to laugh at today's weather forecast: "Rest Of Today...Rain. Chance of rain near 100 percent." Yep, definitely a "ponytail day" today. :)

And now, let's get into it...

Monday morning: physical therapy. Mia just loves spending time with Mary. She is so happy when she sees Mary coming down the hall to greet us and she never wants to leave when it is time to go. That is a GOOD therapist! And a huge comfort to me. Every week is a full week for Mia, filled with many different faces. It is nice to have someone who she really enjoys spending time with and someone she is comfortable with. Except for when she is in pain, Mia is pretty good about letting Mary stretch and massage her ankle, knee and elbow.

During the session, Mary asked Mia if she wanted to get out the cones, which Mia eagerly responded to by yelling out, "THANK YOU, JESUS!!" at the top of her lungs. She probably got that from me because that is what I say ever time I find a parking spot when we arrive for her physical therapy. The lot is always packed, so I am very thankful when we find a spot. So, Mary asked me, "Did she just say...." and I said, "Yep, she said, 'Thank you, Jesus'." Mary just laughed. Apparently, Mia likes the "cone exercise." :)

The purpose of this exercise is to help Mia fully extend her arms out in front of her and work on her balance as she squats down to place them on the floor. When Mia squats down, she really only uses her right leg to bend down. She always protects her left leg. So, this is a great exercise for her. It is a simple exercise that most kids don't have any problems with, but it is a challenging one for Mia. The cones are heavy, but she does such a great job squatting down to pick them up, carrying them out in front of her across the room and then squatting back down to place them on the floor.

Mary got some really great stretches out of Mia's left leg during warm-up and really worked at getting Mia to fully extend her left leg, but near the end of the session she noticed Mia is having a hard time turning around/pivoting. She drags her left leg when she turns. Also, her balance is off. They still haven't determined if her hips have been affected or not. Have I mentioned how much I hate JRA and how it effects a child's body...more specifically, my child's body? Ugh! Children were meant to dance, laugh, jump, run....not experience pain when they try to reach up for their sippy cup or when they squat down to pick up a toy off of the floor.

So, we have more "home work" to do. We are blessed to have a daughter who is quite cooperative when it is time to "sit and stretch."

No OT today - Mia is at home. She woke up with another bad cold and her morning was filled with many tears. It is so dreary here today...and wet. Did I mention we are getting a bit of rain today? So, it is a good thing she was able to stay home today to get better. :)

A Blog In Which I Take Time To Reflect...

"To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends. To appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch, or a redeemed social condition; to know that even one life has breathed easier because you have lived. This is to have succeeded."

— Ralph Waldo Emerson

Saturday's Bliss

Six reasons why I love Saturdays:

1. I am home with my kids (and usually my husband, unless he has to work) after another very busy week. I am constantly craving time with my kids where I can devote my time and attention just to them. I am already looking forward to next Saturday. :o)

2. Saturday mornings. We spend time together as a family...just the four of us (well, five of us if you include our pug, Irving). I usually make gluten-free pancakes for Mia (see above pic), and then we all stay in our jammies and Jay and I spend time playing with the kids. It is our time together to "re-group." We don't get time like this very often, so I look forward to it every week.

3. Cleaning. I love to clean and I love having a clean house. When Saturday finally arrives, my house is a mess from us rushing in and out all week long. So, after the kids are down for a nap in the afternoon, I go to work! And I always listen to Diana Krall when I clean. It is a long-time tradition that I have. Her voice is soothing and relaxing and I find that I get more done when I am listening to her jazzy voice.

4. Preparing for the upcoming week. I am a planner. I am an organizer. And I like that I am this way. I enjoy looking at the calendar and knowing EXACTLY what I need to prepare for. I usually spend Saturdays (and Sunday afternoons and evenings) making meals for Mia that I can freeze. Those are my "prep days." That way, I am always one step ahead of the game. Preparing ahead of time means less stress in the long run...and more time with my husband and kids.

5. Cooking shows. I don't get to watch much tv during the week, so I enjoy turning on the Food Network and watching a cooking show or two. My favorite shows are: "Everyday Italian" with Giada De Laurentis, "Barefoot Contessa" with Ina Garten, "Paula's Home Cooking" and "Paula's Party" with Paula Deen, and "Road Tasted" with Paula Deen's sons, Bobby and Jaime. :)

6. Calling home. Yes, I will admit, I do call home at least three or four times every day during the week (my parents just LOVE IT!). So, I love Saturdays because having a "free day" provides me with the opportunity to call them seven or eight times! My husband was very wise to get us unlimited long-distance. My phone calls to them begin early in the morning and, since they both stay up pretty late at night, I will call them all the way up until 11:00 p.m. They like to pretend they are sleeping, but I know better! ;o) Thank, Mom and Dad, for always "lending an ear" to a daughter who is far, far away.

HOORAY FOR SATURDAYS!

Thursday 13

THIRTEEN NEW DISCOVERIES I HAVE MADE:

1. I am not a professional, gluten-free/dairy-free/egg-free chef, but I am aspiring to be one. :)

2. If you give your kids healthy food, they may not thank you now, but one day they will.

3. Some of the "vitamin water" and "protein water" products available in stores contain milk derivatives, which can cause severe reaction if consumed by someone allergic to milk.

4. Foods that are high in Omega-6 fatty acids (i.e. egg yolks and corn, sunflower, safflower, soybean and cottonseed oil) should be avoided because they cause inflammation.

5. Food that are high in Omega-3 fatty acids (i.e. flax seeds, walnuts, winter squash, and fish, such as halibut, salmon and tuna) are our friends because they reduce inflammation throughout the entire body. :)

6. I love cooking with coconut oil now (it comes in a jar and looks like Crisco). I use it for both cooking (i.e. organic popcorn and brown rice) and baking (as a substitute for vegetable oil or canola oil). And it smells fantastic! I could stand in my kitchen for hours with my nose in the jar because it smells so great! Also, it works wonders for cracked, dry hands. I have been tempted to taste it, but I think that would be a big mistake and the "love affair" would come to an abrupt end.

7. Goat's milk is expensive! So, I am looking into other alternatives for my baby boy.

8. I never thought I would be a "health nut." NEVER. When I was Mia's age, I lived on salami on Ritz crackers practically every day for lunch (unless "encouraged" to eat Miracle Whip and cheese sandwiches on white bread...bleh!) and just assumed that is what I would feed my children one day (minus the cheese sandwiches!)...along with McDonald's Happy Meals. Boy, have times changed!

9. There are so many options for those with food allergies these days. I don't think gluten-free, dairy-free, frozen waffles or uncured, gluten-free, casein-free turkey hot dogs were around 20 years ago. Thank God times have changed!

10. Rice is nice. :)

11. Soy, oh boy!

12. Lara Bar's Cherry Pie tastes like a cherry Fruit Roll-Up and my daughter LOVES them! One Lara Bar is equal to one serving of fruit. They can by found at Trader Joe's, Whole Foods and some health food isles at your local grocery store. (Thank you Tanya D. for introducing these tasty treats to our fam!)

13. I am graced for this season of my life.

Rain, Rain, Go Away!

I hate the rain. Not just because it makes the day feel so dreary (not to mention it takes all the lovely volume out of my very thin, fine hair), but because of how it affects my daughter's body. It seems like every time there is a snow storm or we experience cold, rainy weather, Mia's joints are worse. Even more of a reason why I am looking forward to warm, sunny weather in the next few months! Hooray for spring!

Today at OT, Mia's regular therapist, Kelly, was joined by a PT from the Early Intervention program to examine Mia's joints and offer additional ideas to help. Before they arrived, I noticed Mia was limping again this morning (UGH!). The therapists noticed, too. However, that could be because of the nasty weather we are enduring today, which is causing her leg to not be straight. Either way, I hate to see her this way.

Yesterday, while she was at school, Mia fell twice - the second time was worse than the first and now she has nice bump in the middle of her forehead. Now, I know what many of you might be thinking - "Kids fall down." Yeah, yeah, yeah. I've heard it...many times! But, it is different with Mia. I am well aware that kids take a tumble every now and then. However, we are starting to realize that Mia's "mishaps" are mostly related to the arthritis. Today's OT appointment just confirmed that even more. She fell four times during the session (30 minutes). And all she was doing was walking around the room! The first time...no big deal. By the fourth tumble, both the OT and the PT were concerned. So, the PT examined Mia and saw she may be quickly switching from the right leg (ankle) that hurts back to the left leg (knee) that hurts and when she steps down on her left leg she is getting caught on her swollen toe and that is why she keeps falling down. And, because she is limping, this also causes her balance to be off.

So, they told me to make sure that she is having equal rest-time and play-time. Just as it is so important to promote movement to her joints, it is also important to let them rest. They recommended no extra-curricular activities right now that would put stress on her joints. So, I guess gymnastics is "out" for the time being! :) They also said jumping should be limited because it could aggravate her joints and just cause more pain. They are going to try to get her into an aquatic program immediately. This will allow Mia to move and exercise in an environment that will benefit her joints rather than harm them. That would be awesome for Mia!

Praise Report: Mia's OT mentioned that she knows Mia's school teacher! Apparently, she had a patient over there in the two-year-old class who she recently saw for about a year and a half, so she was over there all of the time. So, Kelly suggested that she stops by and talks to the teacher to let her know what to watch out for and any things that would help make Mia's day a bit easier. She said she wouldn't mind stopping by over there to check on Mia once in a while either. That way, it comes from the OT and doesn't make me look like a crazy, over-concerned mom. I love how God works - He lines up specific people to assist you during tough times! :)

Seeing Is Believing!

“He's your bodyguard, shielding every bone; not even a finger gets broken.” - Psalm 34:20

When Mia woke up this morning, I noticed during our routine stretches and joint massages that her left knee was looking pretty good! So, I had her lay flat on the floor and I examined her knee further to see how close the back of her knee was to the floor. It was VERY close...maybe just a few degrees to go! Not to mention you could really see the definition in her kneecap. A few months ago, her knee was the size of a tennis ball. So, that is HUGE!

So, when we got to physical therapy this morning, Mia ran up and down the ramps and got some good stretches in out of her left leg. Again, several months ago, Mia was not running at all so this is major progress. Then Mary had her sit on the floor and do some puzzles while she stretched out Mia's leg. She applied moist heat (a heating pad wrapped in a damp towel) for about 20 mins. and then she did some presses on Mia's knee to see how close she was to "normal." We were both so amazed - Mia is at 0 degrees!! Of course, it was with the assistance of the hot towel, but she was at 0 nonetheless! Praise God!

There is still some fluid on her joints and some work to be done on her knee. She has developed bad habits because of the JRA. When she squats down to grab something, all of the weight is on her right leg. When she goes up the stairs she protects her left knee by using her right leg first to climb up and her left leg first when she goes down. But, this is all stuff her therapists can work on with her. We are VERY thankful to God for the progress she has made. There are kids with JRA who can't even open their mouths all the way because the arthritis is affecting their jaw and some kids can't even turn their heads. And most of these kids are on steroids. We have a lot to be thankful for!

Below are a few pictures I took today of her knees and toes. She still has some fluid on the left knee and several of her toes are still swollen. However, we STILL know that her joints and bones will function with NO disease and that her immune system will be CALM and NORMAL!

Figure 1: still some fluid on the knee
2.4.08

Figure 2: front view
2.4.08

Figure 3: side view - standing straight!
2.4.08

Figure 4: a few swollen toes
(right foot: big toe; left foot: second toe)
2.4.08

Six Quirky Things About Me!

I have been tagged by Rebekah (a.k.a. "Supermom Extraordinaire" and one of my best friends!) at The LaBouffs to do this meme. Even though the purpose of my blog is to report on my daughter's health, it is important to make time for fun things like this.

The rules for this meme are: (1) Link to the person that tagged you. (2) Post the rules on your blog. (3) Share six non-important things/habits/quirks about yourself. (4) Tag six random people at the end of your post by linking to their blogs. (5) Let each random person know they have been tagged by leaving a comment on their website.

Six Quirky Things about me....

1. I can't cook if there are dirty dishes in my sink! I am so with Rebekah on this one. I just stare at the sink and think to myself, "Where do I begin? I am never going to get dinner on the table on time....maybe we should just skip dinner for tonight? Hey...now, that's a brilliant idea!"

2. I am a partial germaphobe (yes, that is a word!). Okay, maybe a major germaphobe. For example, yesterday when my daughter came home from her first day at school, I wanted to scrub her down from head to toe with antibacterial soap and wash away any bacteria that may have jumped onto her precious, little body. If bleaching a child from head to toe was permitted, I would have been all over that!

3. In my opinion, woman over 40 should not have long hair. Sorry to all the ladies out there who read this and think, "Hmph....well, I never!" It is my "thing." Every one has their "thing" and this is mine. And I can promise you this - on my 40th birthday (which is 9+ years away! ACK!), I will NOT have long hair. Mark my words.

4. I have an interesting therory on how to prepare a baby's bottle. After I put the formula in the bottle, I have to turn the top of the Avent bottle three times so I hear three, distinct "clicks" before I tighten it and give it to my son. Granted, I got this wonderful tip from a dear friend, but now it has become a habit. I am convinced that if you do not hear those three, lovely "clicks," the milk will leak out of the bottle and all over your child when you are feeding them. Try it. You will see.

5. I can not sleep with my hair down. Each night, before I go to bed, I put it in a ponytail. The thought of oily hair touching my face at night while I sleep grosses me out. Also, it prevents pimples.

6. I can not go to the bathroom if the toilet paper is facing the WRONG direction. This last one bothers me more than the others. Toilet paper should be accessed from the top of the roll and not from the bottom. And I will admit, when I use a public restroom, if the "TP" is facing the wrong direction, I will take time to help the janitorial staff out by flipping the roll over. Until then, I can not use the facilities in peace. :)

Six Quirky People I tag are:

1. JMae
2. BlarneyBlazer
3..Steph Lloyd
4. Natalie
5. Amy C.
6. Sarah

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! :)