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.