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