Vacation, A Mysterious Rash, and One Absurd Day.

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

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

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

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

Great.

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

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

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

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

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

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

Moving on...

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

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

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

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

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

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

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

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

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

Visit to the Rheumatologist...

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

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

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

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

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

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

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

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

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

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

PT Update

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

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

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

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

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

PT Update

Today at therapy...

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

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

Will keep you posted...

Six months later.

So, here we are. Six months later.

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

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

This has stuck with me.

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

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

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

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

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

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

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

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

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

New Allergy-Friendly Foods for Kids!

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

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

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

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

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

New Tasty GF Treat!

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

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

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

Speaking of Eyes...

Mia has conjunctivitis! BLEH!

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

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

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

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

Checking for Uveitis...

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

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

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

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

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

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

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

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

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

Postponed...

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

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

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

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

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

Thank you. :)

PT Update!

Good news: Mia did great at her therapy session today. She wasn't favoring either leg and was very balanced when walking on uneven surfaces and with squatting and bending. Mary was quite impressed! Also, her elbow was straighter today. She is still having problems turning her hand over so that her palm is facing upward. Also, when she is picking up something with her left hand, she always keeps her right arm bent. It is really odd. Probably just a bad habit or way she is protecting her joint, but she does it consistently.

We need your prayers!: In some cases, JRA can cause the leg that is most affected to grow faster than the other leg, causing one's balance to be off. This can also result in scoliosis later on in life. Up until now, the length of Mia's legs have been exactly the same. Mary measured the length of Mia's legs today to make sure they were still even. Her left leg is now longer than her right. I could visually see it while Mary was examining her. She told us we need to bring this up to the rheumatologist tomorrow during her appointment. For right now, Mary suggested we just keep an eye on it. However, she said if the left leg continues to grow faster than the right then she suggested we put a shoe lift or insert in her right shoe to even out her length and make her more balanced. She said to check with the doctor tomorrow about this because she said most of them don't like to do this, but she has seen great improvement in kids with JRA by just putting a lift/insert in the other shoe.

Mary said she had be en expecting this would eventually happen to Mia and that she has been watching for it. However, we know this is not something that is too big for God!! Mia has come so far since October...this is just another obstacle in the way on her journey to complete and total health!

So, you may ask, "What causes the leg to grow faster than the other?" Well, it is the same reason why her big toe started to grow faster than her other big toe about a year ago - too much blood is pumping to the affected joint causing it to grow at a faster rate than the opposite and unaffected joint.

So, please continue to pray! Also, Mia goes in to see the eye doctor this Friday to have them checked. We are believing and expecting a good report!!

As always...I'll keep you posted. :)

OT Update and Other News

Mia's OT appointment was at her school today. I am still waiting to talk to her therapist to see how everything went, but it sure was nice of her to stop by the school today to meet with Mia. Mia loves Kelly and enjoys her visits with her!

In other news, one week from today we will be heading back into Boston...again. Another appointment with the rheumatologist. I can't believe two months have come and gone since her last check-up. It will be interesting to see what he has to say. Everything has been the same since her last appointment, however, her right knee has some swelling on it now and she has been limping on it a bit. So, we will see what he says and what the next step is for her. We are hoping to start adding things back into her diet this summer to see what has been the cause of the flare-ups and inflammation to her joints.

Also, next Friday we take Mia back to the eye doctor for her three-month checkup. She goes every three months to have her eyes examined for a disease called uveitis (inflammation of the middle layer of the eye, which, if left untreated, can lead to blindness). JRA can cause uveitis in some cases...and girls are more prone to get it than boys. The last time we went the doctor just peeked in her eye (well, we had to hold Mia down while she was kicking and screaming so the doc could get a good look inside). This time, she will have to have her eyes dilated. She had this done back in October for the first time. They dilate both of her eyes in order to look way into the back of Mia's eyes to check for inflammation. It is certainly not a pleasant procedure for a two-year-old. :o/

Also, Mia will be going to see her pediatrician to get a shot to prevent her from getting the chicken pox. Her rheumatologist requested this so if Mia were to get the chicken pox and they had to treat her with some other medication other than what she is currently on that it wouldn't weaken or worsen her immune system even more than it already is. So, in essence, this vaccination will be protecting her immune system.

So, next week is a big week for us. Please continue to keep Mia in your prayers as we stand strong and believe God for a miracle for our little girl! We are believing for a normal, healthy life for her with no inflammation in her body and an immune system that functions the way God created it to with no malfunctions or disease.

PT and OT Updates

When they said on the news, "The cold season is upon us" they weren't kidding.

We, myself and my two babies, have been "fighting the good fight" for the last week or so. It began with Mia last Monday afternoon - a fever and sever coughing which turned into viral bronchitis; two days later, JJ came down with similar symptoms and a ear infection; two days after that, they lovingly passed it on to their mother. Hooray.

So, needless to say, therapy appointments have been put on hold for now until everyone is feeling better again.

And, as usual, Jay was spared from all ailments. :)

Have I mentioned how much I love bleach?!? I've bleached everything I can get my hands on. Our poor pug, Irving, ran for cover when he saw me coming for him! ;o)

So, we shall start fresh next week with all appointments and therapy sessions.

PEEP this!

An early Easter package came in the mail today, addressed to "Mia and family." Enclosed was a VERY special treat - marshmallow Peeps! At first when I saw them I thought, "Oh no! She can't have Peeps! What am I going to tell her when she asks if she can have one?"

Wellllll...as it turns out, Peeps are GLUTEN-FREE!! Hooray!

And I should have known...Gramma (pronounced "Grumma") would have never sent anything that wasn't an "approved" treat for Mia. :)

PT Update

During today's session, Mary noticed that Mia has fluid on her RIGHT knee now. So, we are keeping an eye on it. Mary took measurements right above, on, and right below her kneecap and well see what happens in the next few weeks. When Mary pressed on the center of Mia's kneecap, you could see the fluid ooze out right above....very squishy and puffy. So, this is something new for us to pray about.

Other than that, she did well during her session. During the exercises, she initiated more with her left leg (i.e., climbing stairs, stepping over hurdles, taking giant steps on the colored mats on the floor to get a good stretch out of her left leg). So, that was very good! Mary said her joints were very fluid today with minimal resistance. Her elbow still needs some work, but it is much straighter than it was several months ago.

Overall, it was a good session. :)

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
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Figure 2: front view
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Figure 3: side view - standing straight!
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Figure 4: a few swollen toes
(right foot: big toe; left foot: second toe)
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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