Three Years: The Fight Thus Far...

I know. It has been a while since I've blogged about what is going on with Mia. I am way overdue for an update...and, this is a long one, but a necessary one. This is my "journal" to keep track of where we are at in our battle against JRA. So, brace yourselves as I bring everyone up to speed on Mia's fight....

But first, let's back up a bit.

Spring 2009 - FLARE!
Mia had a major flare. The worst one yet. And, it was awful! She needed to have the fluid on her left knee and right elbow drained and injected with steroids. We saw immediate results afterwards and the inflammation when down very quickly.

July 2009 - Is It Lyme?
After much research, and a very looooong conversation with Mia's rheumatologist, we looked into treating Mia for Lyme Disease. We have several family members and friends who were diagnosed with Lyme, as well. I have not publicly mentioned this until now because we knew there was a lot of controversy regarding "Is it Lyme or JRA?" BUT, when you have a child who you have to carry all over the house because they can not walk because their joints are swollen, inflamed and their arms or legs won't straighten out, you will do whatever it takes to make the pain stop. The way we saw it was if anything we'd be ruling out Lyme Disease. If it turned out to be Lyme then great, it could be treated. And, this would be over. But, if it wasn't Lyme then we'd know for sure and we could write it off the list and could move on.

Mia took Lyme meds (Biaxin and Plaquenil) for four months (July - October 2009). Her doctor, a Lyme specialist told us, "If it is Lyme, she will have a flare in her joints within 2-3 months from now." Well, that did not happen. Instead, she had a flare when her rheumatologist predicted she would have a flare - about one year after the steroid treatments. So, now we know (and now you know). We can rule out Lyme. Regrets? Nope...not any. Moving on..

October 2009 - Taking a JRA Break
We were able to stop physical therapy and, basically, put JRA on the "backburner" for a while. Mia's joints looked excellent and there was no reason for her to continue her weekly PT sessions. We were thrilled. It was nice to be "normal" and not think about joints, meds, physical therapy, and flares for a while.

Spring 2010 - A Mild Flare...But A Flare Nonetheless
Mia's joints started to flare up again. We started physical therapy up again to help reduce the inflammation. At this time, Mia was still on ibuprofen. In June, her youngest brother was born (yay!) and by August the flare continued. Her father took her for a follow-up appointment to see Dr. Lopez and that is when he switched her from ibuprofen to Indocin. He put her on it for three weeks saying, "If this new med does not reduce the swelling on her joints, then we will drain and inject them again." But, the Indocin worked. And, despite the exhausting side effects this new med has on her (moodiness, iritability, sleepiness - she takes a 2.5 hr nap every day), it has helped to reduce the swelling and fluid on her joints.

Fall 2010 - "Making Progress"
I would like to entitle as, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 1." And, I am sure I am not the only parent out there with similar frustrations. Our insurance company sent a letter to Mia's PT, and to us, saying Mia was no longer "making progress" and they will no longer cover physical therapy. Wonderful. Isn't "making progress" par for the course?? This is how it has always been: she has a flare and then she "makes progress!!' Through physical therapy, meds and prayer she "makes progress," gets better and then we wait to see what happens. She is constantly "making progress!!!." I'd love to know who made this call. Obviously, it was someone who does not have a clue about arthritis or autoimmune diseases. Bah!

Lucky for us, a grant was offered for Mia to continue PT. She is the first patient to benefit from this grant. If it wasn't for this grant, physical therapy would not be possible right now. God provides!!

October 2010 -Mia's Three Year Anniversary Since Her Initial Diagnosis and...Scoliosis
Yes. Scoliosis. For those "non JRA-ers" out there, let me explain. When a joint is inflamed (in Mia's case, her left knee), it causes increased blood supply to the bone growth plates situated near the joints. This causes that limb (or digit, like Mia's big toe on her right foot that started to become enlarged when she was 15 months old) to grow faster than the other limb. For a long time, Mia's left leg has been 2cm longer than the right. It was never this bad in the beginning, but over time has gotten longer...which, in turn, affects her hips, back, spine, shoulders, etc. Right now, her spine is leaning to the right and her shoulder blade looks sunken in. When she runs, she swings her left leg out and around. And, she skips to hide it....or to hide that she is limping. It is definitely not something that should be ignored.

So. How do you correct something like this? Simple. Put a lift in her right shoe and "voila" she straightens right up. However, even though this is the second time since she was diagnosed that her PT has highly recommended a lift, this is also the second time her rheumatologist has said she does not need it.

And, here is where our frustration lies.

First off, her rheumatologist claims the left leg has to be 2.8cm to qualify for a lift. The PT says, in so many words, "That is a load of crap." Neither she nor her colleagues have ever heard of such a thing (keep in mind Mia is the second patient of hers that our rheumy has denied a lift to; there was another little girl he said the same thing about a couple of years ago and the parents met with a pediatric orthopedist anyways and had the lift put in). The rheumy says, "What happens when she gets used to the lift?" The PT says, "What is worse? For her to get used to a lift OR for her to get used to the scoliosis and used to a shoulder that is up to high and a back that is not correctly aligned and used to swinging her left leg out when she walks?"

(I agree with the therapist)

We did request for her to have another scanogram (bone scan) done to accurately measure the legs to see how much longer the one really is from the other. But, when I asked the rheumy he said that he only likes to do scanograms every two years because every time we have it done it puts radiation into her body. The last scanogram was done in April 2009 so she is up for another one in April 2011. So, the only option he is giving us at this point is to wait, which I refuse to do.

With that said, we plan to see a pediatric orthopedist in Boston to get a second opinion. It is the smart thing to do.

Moving on to her...

Eyes
What a rollercoaster we have been through recently. Mia has gotten her eyes check every three month since she was a year-and-a-half old for uveitis. We never miss an appointment. It is that important to have her checked. Uveitis can pop up out of no where. It is serious and not something to mess with. That is why her doctors are very proactive when it pertains to anything that happens with her eyes. Thank God for excellent eye doctors! Up until now, Mia's eyes have been clear with no signs of uveitis or any other eye ailments. Until...

Saturday, October 23 Mia came back from ballet class complaining that her left eye was bothering her. I kept an eye on it throughout the day. After she took a shower that evening, she said to me, "Mommy, my left eye won't stop running!" Around midnight, I had to go in to her room because she was crying and the left eye was all goopy and crusty. I immediately thought, "Great. Conjunctivitis." Mia had not been around anyone with conjunctivitis, that I was aware of. So, Sunday morning we started erythromicin drops and immediately the goopiness stopped. I remember thinking, "How strange that it cleared up so fast. That's a first!"

And then, on Monday this nasty, irritated blister appeared on the inside of her left eye and it got worse and worse.



By Wednesday, it was horrible. So, I texted one of my JRA mom friends, Joanne (thank God for other JRA parents out there who understand!) and she suggested I email the pictures immediately to Mia's uveitis doctor, Dr. Foster. He responded immediately and said she needed to be seen.

My husband took her in the next day to have her eyes checked and was told Mia has....Herpes Simplex Virus in her eye. Wonderful. Like she doesn't have enough that she deals with already. Dr. Foster told my husband it was a good thing we brought her in because left untreated the damage to the eye could have been very serious.

They did blood work to find out if the virus was in her body. In the meantime, Dr. Foster prescribed Zirgan. And, this is the part I'd like to entitle, "Why I Am Thoroughly Annoyed By Our Insurance Company: Part 2." Because this drug is new to the market and has not been reviewed yet, they wanted to charge us $400 for it! I was on the phone all day with the pharmacy, insurance company and the doctor's office. Finally, a nurse called me back saying she spoke with the insurance company and they would cover it and it would only cost us $50. That is so much better than $400.

November 2010 - Eye Follow-up
She went back in for a follow-up appointment for her eye one week later. They said she does NOT have HSV in her bloodstream. Thank God! However, we need to continue the drops for her eye until they are gone and follow up one more time this Friday. So far, there has been no inflammation in her eyes...no cells, no uveitis. But, they are telling us this does not mean it could not stir things up in her eye. So, we are back on track with our every-three-month schedule.

Well, folks. That's where we are at with Mia's JRA journey - weekly PT every Thursday, Indocin 3 times a day and she still does 1 tsp of cod liver oil to keep the inflammation down in her body. We have not had to put her on steroids because, so far, we have been able to control the inflammation in her body with NSAIDS. She is still on a GF, DF diet. We have allowed eggs back in...because she loves them and they don't seem to affect her. This fall, her doctor and therapist approved two extracurricular activities, which also benefit and strengthen her joints: ballet and swimming. She does both weekly and really enjoys them both! And, we enjoy seeing her pain-free and happy!

In The Meantime...

We will continue to stand and believe for Mia's complete and total healing in her body. And, we will continue to pray for the other children who also have this horrible autoimmune disease. We pray for peace for their parents in making the hard, heart-breaking decisions concerning their child's health. We pray for strength for them and their child(ren) with every injection they have to give their son/daughter so they, too, can be a "normal kid." And, we pray for an answer to put a stop to this awful, puzzling, bone-destroying disease.

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

Rheumatologist Visit

Mia had an appointment with Dr. Lopez today. Jay took her because I am on bed rest still....and I am glad I didn't go because they waited two-and-a-half hours to see the doctor! Crazy!

Dr. Lopez looked at Mia's joints and said there is definitely fluid on her knee again. He wants her to continue taking the ibuprofen (2 tsp, 3x a day) for the next four weeks and continue going to PT to try to get that swelling down. If the swelling does not go down four weeks from now then he wants to drain the knee and inject it with steroids again...just like they did last spring.

When Jay shared the doctor's report with me, at first I was bummed. But, then I remembered how well her knee responded to last year's drain and injection. And, the timing is good, too, because she will be officially out of school next Thursday and will have the summer to get this under control before she goes back to school in the fall. She really, really, REALLY wants to take ballet again in the fall. So, we've got to get this knee back to where it is supposed to be.

The most interesting part of the visit was how Dr. Lopez asked my husband to fill out a survey that they are doing of all their patients to find out if diet has anything to do with their arthritis. HELLO!!! I've been saying that since she was 22 months old!! He also mentioned to my husband they are looking into the connection between Vitamin D and inflammation. Again, I've been saying this since day one! It is the reason why we immediately switched Mia over to rice milk after she was diagnosed, despite her rheumy's request to keep her on whole milk. Amazing.

So, we will see how she is doing a month from now. Who knows? Maybe the ibuprofen combined with some PT, getting back on the diet again and the daily teaspoon of cod liver oil will help us like it did the first month of this journey. But, even if it doesn't, I feel good about getting her knee injected and drained. The main thing is that fluid just can NOT sit there on her knee. That is what does the most damage to her joints.

Well, I'll keep ya posted! They did blood work today, too. I am curious to find out what her sed rate is at right now. I'll call in a day or so to find out...

First PT Session Since October 2009

Because her knee was so swollen and because we know better than to waste any time when it comes to JRA, I immediately made an appointment for Mia to meet with Mary, her PT, this past Thursday for a physical therapy session. Here' where we're at:

- Her left knee has fluid on it again and is bent 30 degrees again.
- Her right elbow is not swollen (very unusual).
- Her right ankle is swollen.
- She has several swollen toes.

We have an appointment to see Dr. Lopez on June 8th. In the meantime, we are going to try to get in two or three more therapy sessions with Mary to try to get the swelling down. Mary does not want her jumping, riding her bike or doing anything that would increase the swelling. Also, she wants her icing her knee twice a day and agreed with Dr. Lopez on the amount of medicine he wants her on (2tsp of Motrin, 3x a day). She said it might sound like a lot, but the important thing is to get the swelling down as soon as possible so she doesn't have to go on a stronger steroid, like methotrexate.

She observed Mia during the session and said while she is definitely having a flare, she is still trying to be as active as she was before it. She is still running, bending, squatting, climbing. However, it is not normal. Her left leg is now 2cm longer than her right. Basically, the combination of her left leg being longer and the swelling in her knee is causing her to not walk straight....which can also damage her joints.

So, that is the latest. We are back on the JRA rollercoaster....praying it will be a very short ride this time!

We're Back.

Not happy to be back...but, we are back.

It has been such a loooong time since I've posted because, quite honestly, Mia's joints have been perfect. We have been busy enjoying life for the first time since she was diagnosed with juvenile rheumatoid arthritis at 22 months old. And, oh man, how we enjoyed putting JRA up on the top shelf, hoping to never face it again.

Until today.... when Mia woke up with a swollen knee and we were forced to take JRA back off the shelf and assess what is going on with our little girl.

Mia's left knee and left ankle are starting to swell. It has been a year since she had the fluid drained off of her left knee and right elbow and then had the joints injected with steroids. The doctor told us the steroid injections would last about a year and if she was going to have a flare it would be around this time right now. Well, here we are...one year later.

Granted, the weather plays a huge factor when it comes to arthritic joints. And, it has been in the 90's the last several days and very humid. Also, Mia jumped on a moonbounce yesterday for the very first time at her school's end-of-the-year carnival. So, maybe it was that?

However...

Keeping in mind what the doctor told me a year ago, I have been watching for signs of a flare over the last several weeks. I did notice her swollen ankle about two weeks ago. And now her knee.

So, I did what I know to do. I called her physical therapist, who she hasn't seen since October 2009 because she told us Mia was "perfect" (and she was at the time) and did not need therapy, and I made an appointment to get a session in before seeing the rheumatologist in the hopes that she can help get some of that swelling down. Next, I called her rheumatologist and updated him on what is going on. He wants to see her immediately and start her back up on Motrin (2 tsp, 3x a day - THAT IS A LOT!!!). She has an appointment with him in two weeks.

So...here we go again. She is back on the gluten-free, dairy-free diet (we had been letting her have treats here and there for the last several months. It is kinda hard not to when you have a two-year-old who can eat whatever he wants) and she is back on the Carlson's Norwegian Cod Liver Oil.

Tonight she went to bed complaining of a severe headache. She NEVER gets headaches. We are praying the swelling goes down and she feels much better in the morning. For right now, we are taking things one day at a time. We know what to do (in the physical) and we know how to pray. Summer is right around the corner and Mia is going to have a GREAT summer!!

Totally Delicious GF, DF, EF Pumpkin Muffins

My thought: There is no reason why a child who is on a special diet shouldn't be able to enjoy delicious fall treats.

My solution: My very own recipe for GF, DF, EF* Pumpkin Muffins!!

Pumpkin Muffins

(makes 24 muffins)

Ingredients:

1 1/4 cups Gluten-free Flour Mix (I prefer Bob's Red Mill)

1/3 cup coconut flour (if you don't have it, you can substitute with GF, DF flour)

1 tsp salt

1 tsp gluten-free baking soda

1 cup sugar

2 eggs (or egg substitute)

1/2 cup coconut oil (melted)

1 15 oz. can pumpkin puree (unseasoned)

1/4 cup maple syrup (Grade B is the healthiest; we like Trader Joe's brand)

1/4 cup water or milk (I use Trader Joe's Vanilla Rice Milk)

1 Tbs cinnamon

Optional:

1/3 cup raisins (soaked in hot water for 5 mins. to soften)

1/2 cup chopped walnuts (reserve some for top of muffins)

Directions:

Preheat oven to 350 degrees. In separate bowl, whisk together all dry ingredients (flour, salt, baking soda).

In separate bowl, beat sugar and eggs together. Add coconut oil. Add pumpkin puree and blend well. Add maple syrup and milk. Add cinnamon, raisins and walnuts. Combine until smooth.

Place muffin liners into two 12-muffin pans and spray insides of the papers with baking spray. Fill liners with batter (approximately 1/4 cup each). Bake for 20-25 mins. Cool on baking rack. Sit back with cup of coffee and watch your little ones devour a very healthy snack!

Happy Fall!!

*gluten-free, dairy-free, egg-free

FDA: Arthritis Drugs Up Kid's Cancer Risks

FDA: Arthritis Drugs Up Kid's Cancer Risks

Stronger Warning Labels to be Added to Popular Medications, Companies also Required to Inform Patients

We are still here...

We have not left! We've just been taking a slight break...especially from the last three months of craziness that crept upon us so unexpectedly. We are finally enjoying the summer; spending time together as a family, soaking up the sun and watching our kids grow as fast as weeds. Mia is three-and-a-half years old now and her brother, JJ, will be two this Wednesday. And, they keep us busy, busy!

Mia went to see Dr. Lopez again a few weeks ago. It was a good visit. The inflammation in her joints is completely down again, allowing her to fully enjoy all that summer has to offer (trips to the beach, play dates at the park, running, jumping, dancing, chasing her brother all over the house, etc). Yay! Her rheumy wants us to keep her on the ibuprofen (11.5 mls 3x a day) and zantac (3 mls 2x a day) for the next three months. If she does not have any flares during that time, we can start to wean her off of the medicine. So, we are ALMOST back to where we were at this past December. Almost!!

Dr. Lopez took a look in Mia's eyes again while we were there and said he still sees a spot of inflammation in her eyes...same place as last time. When we took her to Dr. Foster's office back in May, they examined her eyes several times and saw nothing. So, we will take her back again and have them check again.

In other news, we are trying some new treatments for Mia, as well. I will update everyone in a few months...

We hope everyone is enjoying their summer as much as we are enjoying ours!

Injection #2 Complete!

I intended to post yesterday, but everyone was drained. Completely and utterly drained.

We got to the hospital at 6:30 a.m. (keep in mind I have the most amazing kids who love to sleep late...so this was a stretch for Mia!). When we arrived, the receptionist informed us that there was an "emergency case" right before Mia's scheduled appointment. So, after getting Mia settled in the play room, off to Starbucks I went and indulged myself in my drink of choice - a Grande Toffee Nut Soy Latte, hold the whip - and was ready for the events of the day. Or, so I thought.

Shortly after I returned, with piping hot java in-hand, they took us down to the ER to get Mia ready. Jay and I walked into the room, holding her hand and she stopped dead in her tracks when she saw all these people in "blue costumes" with "blue hats" tromping about in an absolute hurry. It made ME nervous so I can only imagine what was going through her little head. 

Our designated nurse walked us over to a "room," which was actually just a curtained-off room with a gurney. After we got Mia into her hospital gown and hospital socks the dreaded wait began. Just imagine trying to keep a three year old happy in a not-so-happy place - it was a challenge! In the meantime, there were a large handful of doctors and anesthesiologists who "popped in" to introduce themselves to us and to Mia. She was schedule to go in around 7:30 a.m. which ended up being closer to 9:00 a.m.  Unlike last time where they just put some numbing cream on her hand and then did the IV, this time they put a watermelon-flavored mask on her face and put her to sleep first before doing the IV. And they only allowed one parent to be in the room with her. This time it was me. 

So, I got all dressed up in my "space suit" and entered the room with her. I sat there and held her on my lap while they put the mask on her. After several moments of fighting it, she went limp and was out. I think that was the point where I decided I was truly tired of all of this - tired of putting her through everything, tired of being in pain, tired of being on the JRA rollercoaster. I felt really bad for her and kept asking myself all day long, "How the H*LL did this happen to her??? Where did this come from?? Why did it happen to MY baby?" Questions I am sure every JRA mom asks herself. I was just that tired. 

They injected a dye into her arm to be able to see exactly where they needed to inject the steroid. They extracted about 3 cc's of fluid from her arm and, per our request, sent it off to the lab to test it for infection/bacteria. The procedure itself went well. Mia woke up and was a bit more emotional than usual. After that, we went home.

We are looking into a few other things right now for Mia and I will post more about those things soon.

Thank you to everyone for your love, prayers, and continued support. We have needed it and appreciate it from the bottom of our hearts. And, a HUGE "thank you" to all the JRA moms out there - I appreciate you more than you know.

Another Injectionand Another Joint Affected

Remember the Tin Man in the movie The Wizard of Oz? Remember how he stood there, totally stiff in the woods until Dorothy found him and discovered the oil can would "loosen" him up so he could move?

I am starting to feel like Mia is the "Tin Man" and the "oil can" is the steroid injections. I'd venture to say her rheumatologist is "Dorothy," but if you met the man you'd agree with me that, while he is very kind, he is definitely not "Dorothy" whatsoever. :)

Moving on from my pale attempt of making "light" of Mia's current situation (one just has to be able to laugh these days!)...

Another Injection...
We just returned from Boston...again. Dr. Lopez met with us and examined Mia's knee, post-procedure. He was very happy with the results of the knee injection she had done on May 7th. However, after looking at her elbow he decided she does need to have it drained and injected, as well. So, we head back to Boston next Thursday, June 4th for her second "oil can injection"...I mean, steroid injection. ;o) Since this joint is smaller than her knee, after putting her to sleep, they will inject a dye first so they are able to locate exactly where they need to inject the steroid. Since it is a smaller joint, the doctor mentioned there may be some pain for about 48 hours after the procedure. And, after that, she will be dancing around like the Tin Man again...hopefully! :)

Another Joint Affected...
Last week at Mia's PT appointment, Mary noticed that Mia's middle knuckle on top of her hand looked swollen. So, I mentioned this to Dr. Lopez today and after examining her hand, he agreed - she now has a THIRD joint affected. And, since this joint is so tiny, he said they can not inject it.

So, she will stay on the ibuprofen to alleviate the pain in that joint and any pain she may be experiencing in her other joints. We will meet with him four weeks from now for another follow-up appointment.


...for now. :)

PT Update and a Chat With The Doc

Today's PT session was a challenging one. Mia would barely let Mary touch her arm. She did allow her to put some heat on it, but when it came to massaging it and stretching it, Mia would not let Mary go near it. The session went by fast today, which was a good thing. When we left the house to go to PT, Mia cried the entire way there, begging me to not take her today. I almost didn't.

I spoke with Dr. Lopez today. He agreed with Dr. Natter that I should start looking for the steroid again because he said she will need to have her elbow drained and injected. So, after we take Mia in to see Dr. Lopez next Tuesday, he wants her to also be seen by the pediatric orthopedist to have him/her take a look her elbow and determine when the procedure should be done.

With that said, does anyone out there know where I can find a steroid (Triamcinolone Hexacetonide - Aristospan) that the manufacturer has stopped making?? Emails and comments welcome!

Elbow Injection?

Mia has been complaining that her elbow hurts. So, I paged the doctor on call - Dr. Natter (he works with Dr. Lopez). He thinks she needs to have it drained and injected (same procedure as her knee). Which means...

I am steroid hunting, again.

This time, the doc told me to contact the FDA directly and see where I can get it. He said since it takes so long to get it that I should start looking now since that is the direction she is heading. Great. Let the hunt begin.

He also mentioned that it sounds like to him that Mia has psoriatic arthritis (????) and told us to mention this to Dr. Lopez. Interesting. So, we'll mention it to her doc and see what he says. Dr. Natter told me that they tend to be a bit more aggressive with meds if it is psoriatic arthritis, meaning they would definitely do the elbow draining and injection and start her on immediately start her on methotrexate.

Our appointment with Dr. Lopez is on May 26 and he will be the one to ultimately decide if Mia need to have the elbow procedure done. If she does, the pediatric orthopedic department will do the procedure - not rheumatology.

In other news, Mia's stomach has really been hurting from the ibuprofen. The doctor recommended I take her off of the ibuprofen for now until her stomach calms down. Great...and what about her elbow then?? Take her off and no stomach pain, but elbow and possible knee pain. Or leave her on it and no joint pain, but continued stomach pain. UGH! I didn't agree with him. I don't want to take any chances here. Can you blame me?? So, he wrote me a prescrip for Zantac. She was on Zantac last July when she was experiencing the same stomach/G.I. issues. It seemed to work well and she had less irritation and stomach cramping when she took the two together. So, we'll try that for now and see what Dr. Lopez has to say next Tuesday. For now, we have been wrapping her arm with an ace bandage for about 30 mins. several times throughout the day. She said it feels better when it is wrapped.

Up on deck for this week:
PT - Monday and Thursday.

PT Update and "New" Knee Pics

Mia went to see Mary (PT) on Monday. JJ tagged along because my husband was out of town and I couldn't find a sitter. I gave Mary a "heads up" that The Screamer would be joining us today. She didn't mind at all. We *heart* Mary!

Being this was the first time Mary has seen Mia's knee since the procedure, she was quite impressed! She did some warm-up exercises and massage to her joints and then took some measurements...

Left knee:

Before procedure: -30 degrees

After procedure: -8 degrees (YAY!!)

Right elbow:

Before procedure: -15 degrees

After procedure: -10 degrees

Spine and hips:

no signs of JRA or scoliosis

Leg length:

left is still 2cm longer than right

We went to the park on Saturday because Mia seemed to be feeling better. It was the first time she has been outside to play in weeks! We were so thrilled as we watched her go up and down the slide. However, she may have overdone it a bit because the next morning she was stiff and limping again. So, now we know what is too much for her. Everything in moderation. :)

As promised, here are a few pictures of Mia's "new" knee. You can see her "old" knee here.

side view:
YAY!! Much straighter than before!

We can see her kneecap again!

front view:
She is bearing her weight
on the left side again

The injection really helped! Mary thinks that with some PT twice a week she will be able to get Mia back down to 0 again.

As for her elbow, it really needs some help. The muscles around the joint are starting to harden, making her forearm look larger than it should look. Mia would barely let Mary touch it on Monday. She told Mary it was "ouching" her. So, we are going to focus on that now...wrapping at nap time, icing the joint, extra PT at home, etc.

We go back to see Dr. Lopez in a about two weeks and we will see what he thinks the next step should be for Mia - another leg brace? brace for elbow? a "lift" inserted into right shoe to balance her out? We will see. :)

Oh, wait! One more thing...

Last week was a long week for Mia...physical therapy sessions, eye appointments and finally her knee procedure. So, on Friday, with her doctor's permission, Mia went with her cousin, Isabella, to see Dora The Explorer Live at the Boston Opera House. Mia was so happy to finally have a FUN night out! "Thank you" to Grammy and Papa for treating all of us. :)

So happy to finally be out of the house
and doing something FUN!

left to right: Lori (SIL), Isabella (niece),
Mia, and me (sporting Mia's Charlie and Lola backpack!)

We Are Home!

Everything went well with Mia's knee procedure. She did an amazing job! She wasn't too thrilled with the IV and cried and cried for her little brother, JJ, but after it was in she wanted to know if she could take it home with her. I think she had big plans to add it to her pretend doctor kit. :)

The procedure was fast and smooth and before you knew it we were back in the room with her. The fluid was clear, so Dr. Sgarlat was able to extract about a teaspoon of fluid from the knee. Then they injected the steroid and massaged it into the joint. About half-an-hour later, Mia woke up. She was very upset and groggy at first, but after she had a few crackers she was doing better. And then, The Mia Show began. She told the doctors and nurses present she went to see The Grinch with her friend Alizée and then proceeded to entertain them with very slurred rendition of "You're A Mean One, Mr. Grinch." The audience loved it! That's when I knew she was okay. :)

Dr. Sgarlat told us that she needs to take it easy for the next 24 hours...no major activity. She said walking was okay, but we tried to do that with Mia since she's been home and she seems to be in some pain still. I am really hoping this procedure bring her some relief. But, for now, she is still asking us to carry her. Which is fine by me...my baby has been through a lot!! :(

Thank you, again, to everyone for praying!! We really appreciate it!

And now, my kids are napping and so shall I! :)

Sed Rate, ANA Test and Knee Procedure Day!

First, a few things to record...

Spoke to Dr. Sgarlat yesterday. Mia's sed rate is very high right now - 60, to be exact. When she was initially diagnosed, she was at 40. Then, a year later, we were able to get her down to 15 (normal). She was not happy with how high it currently is.

When we were at Dr. Foster's office on Tuesday, Dr. Hinkle as us about her ANA test results. So, I checked with Dr. Sgarlat on that, too. She said that Mia tested positive for ANA, indicating to them that, besides her joints, there is some other inflammation going on in her body.

What is an ANA test, you might ask?
It is an antinuclear antibody (ANA) test. The ANA is a screening test. It is a protein which is made by the white blood cells. The ANA test is the most common test to be positive in children with juvenile rheumatoid arthritis. It is often called the "lupus" test. However, in children it is more common for patients with a positive ANA to have juvenile rheumatoid arthritis, since lupus is uncommon in young children. The ANA test is positive in about 2/3 of children with pauciarticular JRA Type I and about 1/3 (or more) of children with polyarticular JRA. Also, the ANA is a marker for patients at higher risk for development of eye inflammation.

With that said, we will continue to take Mia to see Dr. Foster every three months to be checked for uveitis.

Moving on...KNEE PROCEDURE DAY!

Dr. Sgarlat and Dr. Miller will be doing the procedure on Mia's knee. Provided the fluid is clear and not bloody, they will extract the fluid in her knee and inject the steriod (aristropan) directly into the joint. Oh yeah...about that crazy steroid hunt I have been on! After calling several pharmacies and about ready to rip my hair out, I spoke with Dr. Lopez, explaining that we were having a hard time finding it and he said to just bring her in and to not worry about it. I sure do hope they have enough for the procedure!

So, no breakfast or liquids for Mia this morning. We will be heading into Boston soon...hopefully traffic isn't as bad as it was on Tuesday! She has to be there at 9:30 a.m. and the procedure is at 10:30 a.m. Mia's favorite little lamb, "Baa," will be joining us today, for comfort before and after the procedure. Theu told us it would be helpful to her for us to bring something familiar...so, "Baa" it is! :)


I will write more later on how everything went. "Thank you" to our family (near and far) for your prayers. We ask that you stand with us today and pray for Mia. And, "thank you" to all the JRA moms who have emailed me or commented on my blog. Your words of encouragement and prayers have meant a lot these past few days.

Last PT Before Knee Procedure

Today was a good session, considering Mia is at her worst right now. The PT took some measurements of her joints (0 being "normal:):

Left knee:
Initial Diagnosis: - 20 degrees
A Week Ago (when we started PT again): -10 degrees
Today: -30 degrees (EEK!!)

Right elbow:
Initial Diagnosis: - 8 degrees
Two Days ago: -20 degrees
Today: -15 degrees

Currently, when she is able to walk, she is walking on the ball of her left foot and not putting her heel down at all. She was in a lot of pain today during the session...MUCH resistance to stretching and massage. :(

Up on deck...
Tomorrow: Knee Drained/Steroid Injection at 10 a.m. at NEMC

"The LORD gives strength to those who are weary. They run and don't get tired, they walk and don't lag behind. "
- Isaiah 40:31

I Am THRILLED To Report...

...there is NO INFLAMMATION in Mia's eyes!!! God is GOOD!

We have just returned from our visit to MERSI where she had her eyes checked by Dr. Hinkle and he confirmed...her eyes are CLEAR!!!

So, I am not sure what Dr. Lopez saw/thinks he saw, but there was nothing there. They checked several times. We plan to stay with this new doctor. The service was outstanding - everyone was so friendly and helpful! Plus, we are happier that she is seeing a uveitis specialist now. So, we will go back there every three months from now on to Dr. Foster's office to get her eyes checked.

You have no idea how relieved,happy and OVERJOYED we are right now! It is soooo wonderful to finally get some good news amongst all the bad. YAY!!!

Up on deck:
Wednesday: PT with Mary
Thursday: Knee drained and steroid injection
Friday: rest from a very loooong week! :)

She's the Bee's Knees!

Here's a bit of trivia for you, which I find highly enlightening and encouraging!

A bee's "corbiculae", or pollen-baskets, are located on its tibiae (midsegments of its legs - knees). The phrase "the bee's knees," meaning "the height of excellence," which became popular in the U.S. in the 1920s, is a term indicating excellence - the highest quality - because bees carry pollen back to the hive in sacs on their legs. The allusion is to the concentrated goodness to be found around the bee's knee.

With that said, here is what my daughter's knee look like right now. The left knee is bent at -10 degrees...that is the furthest she can straighten it at this time.

(side view)

(front view)

But STAY TUNED because her knee is not going to remain this way! Her knees will be of the HIGHEST QUALITY once again!

(Mia Grace - almost 3.5 years old
and still smiling through the pain)

“Your body will glow with health,
your very bones will vibrate with life!”
Proverbs 3:8 (Msg.)

Full Steam Ahead!

We have a busy, busy, BUSY week ahead of us. Lucky for me, my husband is home again, providing an extra set of hands around the house (PHEW!). It makes such a HUGE difference. Not to mention, someone who knows exactly how to care for Mia with what has been going on as of late.

To update everyone, last week was a rough on for Mia (and me). She had back-to-back appointments last Thursday and by the end of the second one both she and I were in tears. It had been a loooong week. On top of getting back in the "JRA fight," I came down with tonsillitis and a double ear infection. Great. Just what every mom needs when they are trying to care for their child who is dealing with a chronic illness. As I mentioned before, I am very happy my husband is home!

Moving on...

To Mia's dismay, I switched her eye doctors. Her current doc was a pediatric ophthalmologist, but not a uveitis specialist. So, at Mia's three year check-up last week I spoke with her pediatrician about switching. I've always liked her pediatrician, but now I like him even more. He actually took the time to open up his laptop, check out the site I directed him to (thank you, Joanne!), review the list of uveitis specialists with me, and agree that we needed to get her in with a specialist. So, I canceled the appointment she was supposed to have last Friday and got her in to Dr. Foster's office for this Tuesday (tomorrow). We are believing for a CLEAR report for Mia's eyes. I still can't figure out why her old doctor never saw the cells and why her rheumatologist did. Very puzzling. But, hopefully, Mia will like this new doctor. I am sure she will...she has a knack for immediately warming up to strangers/new doctors and making them laugh within a few seconds of meeting them. Case in point - while we were in the elevator last week at NEMC, Mia introduced me to all of her new "elevator friends:"

Mia: "Hello, everyone! I am Mia and this is my Mommy!"

Elevator Friends: "Hello, Mia! Hello, Mia's Mommy!"

Me (quite embarrassed!): "Hello! Hello, everyone in the elevator!"

My husband (jokingly): "Pay no attention to the guy pushing the stroller..."

Elevator Friends (laughing): "Hello, Mia's Daddy!!"

Mia: quite pleased with her self. :)

Me: embarrassed, but laughing. :)


Up next...

Mia goes in this Thursday to have her knee drained and for steriod injections (aristopan) directly into the joint. I have been trying my best to make her as comfortable as possible this past week. I have found that long car rides, sitting at the dinner table does not help her knee or her circulation. When I get her out of the car or down from her seat at the table, she can barely walk. She has been asking me to let her scoot on her bum in order to get around. That is too heartbreaking for me. So, I tell her that I'd prefer to carry her than have her scoot on the floor. :(

I have been trying to think of special things that will put a smile on her face since she can't be as active as she'd like to be. That has been the toughest part - finding a balance between sitting and walking/trying to walk. Too much sitting results in stiff joints. Too much walking results in swollen joints. Ugh. So, to keep her happy and smiling I've been allowing her to take "picnic meals" on the couch while watching her new Winne the Pooh movie. We have a chaise where she can sit with her legs out in front of her - the best position for her. We have discovered then when she sits at the dinner table, her left foot becomes ice cold - obviously a ciculation issue because of her swollen knee. So, "picnic meals" it is! Plus, it is something special for her, something we wouldn't normally allow. :)

So, that is about it. Mia is not able to go to school right now, per doctor's orders. I was able to get her in for two sessions of PT before the "big day." She has an appointment later on today and another one on Wednesday. While the appointments are pretty tough physically for her, Mia always manages to make everyone laugh. Last week, at the end of her appointment she took a bow in the hallway and said "Thank you, thank you!" to her therapists. Everyone enjoyed the Mia Show. :)

Back From Boston

Mia had her appointment today with Dr. Lopez. However, before we even got to the appointment, we had some challenges at home...

Mia woke up this morning and was crying. I went down to her room and she was holding onto the side of her bed, crying and saying, "Momma, I can't walk!" So, I immediately put her in a warm bath to alleviate the pain. Afterwards, she still wasn't able to walk. So, we loaded up the car and headed into Boston. I am SO glad we had an appointment today. Otherwise, I think we would have needed to schedule an emergency appointment for her.

When the doctor came in to see her he could tell right away her knee was very swollen. We told him how we had weaned her off the medicine too fast and gave him the update as far as when we started her back on the Naproxen and when the flare started. After examining her, he concluded that:

1. She will need to have her knee drained. They are looking to schedule the appointment for early Monday morning (5/4/09). Since the procedure is painful, and not one that a small child can endure awake, they will have to put her to sleep for it. They will be draining as much fluid as they can from her knee and injecting a steroid into her knee. Dr. Lopez said the steroid should help her anywhere from 3-6 months up to a year. She has never had this procedure done before (NOTE TO ANY JRA MOMS OUT THERE: any feedback would be greatly appreciated!).

2. New medicine. They are switching her from 7.5ml of Naproxen 2x a day to 11.5ml of Ibuprofen 3x a day. Dr. Lopez feels that the Naproxen is no longer working for Mia. She has been on it for the last three weeks and her condition has only gotten worse. So, the Naproxen is no longer helping.

3. Inflammation in one eye (uveitis). Dr. Lopez examined her eyes and said there is a "density" or "thickening" in her right eye. I told him she was just examined on April 17th by Dr. Zuckerman and she reported there was no inflammation in her eye. However, they did not dilate her eyes at this past appointment and Dr. Lopez said they should be doing it every time she goes. Also, her flare occured right after her last appointment. So, either they missed it or it wasn't there until afterwards. So, we are going BACK to see Dr. Zuckerman this Friday (5/1) to have her dilated Mia's eyes and check again. Results from this past visit and the one this Friday will be sent to Dr. Lopez for his review.

4. Leg brace. We can't get her fitted for a brace or have her use a brace until we get the swelling down. Once that goes down, then she can be fitted again to wear a brace on her leg again at night to help keep her leg straight.

5. Scan-o-gram. Mia had another scan-o-gram done today after meeting with Dr. Lopez. She's such a pro now! She went in with her daddy, they said "cheese" during the "picture taking" and when she left the room, she took her Daddy's hand and said, "So ANYWAYS....let's go see my Mum!" Like I said, SUCH A PRO!!

6. Blood work. They did more blood work again today. Unfortunately, we've gone there so many times now that this time Mia knew where we were and what the lady in the other room was going to do to her. She was not thrilled. I will get the results back in the next day or so and find out what her sed rate is, etc.

Phew! I think that is it! So, we are going back to what we kn ow and what worked for her at the very beginning of all this - switching her medicine, very restricted diet and cod liver oil. For now, I am taking her off eggs again to see if that helps. Right now, I am just trying to make her as comfortable as possible for the next few days until she has this procedure done to remove the fluid from her knee.

Do we feel discouraged? Nah. We've already been down that road. There's no point to it! If anything, we feel empowered. We have another battle to fight. We have fought it once before and we'll fight it again. We have seen Mia arthritis-free! We got a good report several months ago that there was "no evidence of arthritis in her body." We are holding onto that good report. We will not remain here, but we will go through it! We are surrounded by the best doctors and therapists and our wonderful family and friends who are always supporting us with prayers and encouraging words (THANK YOU!!!). Most importantly, God is her healer. So, we shall overcome!!

One Step At A Time

Mia had her physical therapy appointment with Mary this morning. First thing Mary said when she saw her knee was that it looks larger than it has ever looked, even larger than it was at her initial evaluation. My heart sunk. To confirm her evaluation, she had Kathy, the other PT who saw Mia when she was first diagnosed, come in to take a look at her knee. Kathy said the same thing. Her knee is hard as a rock and very knobby looking. Usually when there is fluid on or near her knee Mary is able to massage it away, pushing the fluid away from her kneecap. However, it is almost like the fluid is tucked underneath the kneecap in an unreachable spot...and that it is hardening?? Or there is an overgrowth of cartilage. Weird. All I know is it is BIG.

Mary was concerned that she may need to have her knee drained. My heart sunk even further. She has never had this procedure done and I am praying that she won't have to. But, that is something for the rheumatologist to decide.

As far as her range goes, zero being normal, she is back at -10. That's quite a jump back after being between -2 and 0 for such a long time. When the measured her at her initial diagnosis, her knee was bent at -20 degrees. In November 2007, after one month of being on the naproxen, GF-DF-EF diet and cod liver oil, we were able to get her knee down to -10 degrees. So, we know what works, we just need to buckle down, again, and do it! Fast!

The other concern both Kathy and Mary had was that the length of her left leg is measuring longer than her right. This is a common side effect with JRA - the joint affected tends to cause that leg to grow faster than it should, resulting in legs of different length and muscle wasting. Mia's scan-o-gram back in June 2008 showed that her left leg was measuring 1cm longer than the right. It is now measuring 2cm longer than the right. So, Mary suggested we talk to Dr. Lopez about putting a "lift" inside Mia's right shoe in order to balance her out and to prevent her hips and back from being affected due to the difference in the length of her legs.

During PT, Mary iced Mia's knee for about 15 minutes and then tried to get Mia to climb the stairs (three steps up, three steps down). Mia placed her right foot on the step (in order to protect her left) and then refused to go any futher. She begged Mary to hold her hand and help her up the stairs. We tried to encourage Mia to do it on her own, but she started to cry and said she needed help because it was going to hurt. So, in the end, Mary helped Mia climb up and down the stairs. And, just like she used to do in the beginning, Mia would go up with the right and come down with the left, allowing her right side to do most of the work in order to protect the inflammed joint.

At the end of the appointment, Mary suggested we call Dr. Lopez's office to get Mia's appointment moved up from May 7th to a.s.a.p. I called them today and he is going to see her on Tuesday, April 28 in the morning at the Boston office. She also highly suggested aquatic therapy. I need to get a referal from her pediatrician for it, but we do have a place nearby that does aquatic therapy for children. As for physical activity, it needs to be limited - no jumping, riding bikes, etc. I am thinking, "Great...how do you keep a child from doing the things they love to do?".

We are taking each day as it comes, one step at a time. Mia has one more PT appointment before we meet with Dr. Lopez on Tuesday. We are really trying to work at getting that knee down before he sees her. I am already preparing myself as it could be a long appointment on Tuesday - more blood work, possible ultrasounds, etc. We will see what he says.

On a more positive note, we are going to be having some GREAT weather this weekend. So, in order to make things as normal as possible for her, I am hoping to get the kids outside a bit and maybe take them for some walks...in the stroller, of course. Fresh air is always a good thing, especially for mommies. :)

More to come on Monday after her next PT appointment. Stay tuned...

A Million Questions

Was it too much sugar?

Was it because she went off the medicine too fast?

Was it the rainy weather?

A million questions fill my head, along with a million reasons why I HATE JRA.

With that said, it is official...I have returned to this blog. As most of my readers know, this is my personal online journal. I write to keep track of what is going on with Mia and how JRA is affecting her body. I write to keep myself encouraged. And, I write to inform others to ask them to pray for our little girl.

While I enjoy writing, I must admit...I was thrilled to be able to take a break from this blog. Mia had been doing soooo well for soooo long. And, now this...her second flare:

(left knee swollen from JRA.
also, bony overgrowth of cartilage
on the inside of her knee from the arthritis)

The first flare happened back in November of 2007. We worked HARD to get the inflammation down in her body. Just thinking about all the tests, medicines, MRI, therapy sessions, ultrasounds, leg braces, elbow wraps overwhelms for me...so I won't go there. We know what we have ahead of us. Most importantly, we know what to do to get the inflammation down in her joints.

For those of you who have no idea what juvenile rheumatoid arthritis is it is an autoimmune disease, meaning that white blood cells lose the ability to tell the difference between the body's own healthy cells and harmful invaders like bacteria and viruses. The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissues and cause inflammation and pain.

At her initial diagnosis when she was 22 months old, her right elbow, left knee, right ankle and several toes were inflamed and swollen. She had a hard time straightening her leg and would drag it when she walked. She could not straighten her right arm all the way either. But, once we put her on a gluten-free, dairy-free, eggless diet and started giving her a teaspoon of Carlson's Norwegian Cod Liver Oil once a day we saw immediate results. It took a little more than a year and then we we finally received the good news from her doctor - "no evidence of arthritis in her body." (I am holding onto that good report because I believe she will get there again!)

Fast forward to today.

In the last week or so, we noticed some swelling again in her knee. So, when I dropped her off for school today I informed her teachers so they would be aware of any discomfort she may be experiencing. I specifically told them if she was going to have any problems it would be after nap time. With JRA, when a child has a TON of activity and no period of rest (like a full morning at school) and then lays down to take a nap (on the floor) after several hours of activity, the joint(s) affected tend to swell up, creating a very painful situation when the child wakes up.

And that is what happened today.

I got the call at 3:00 p.m., right after nap time, that I should come get Mia because she was in crying and saying her knee hurt. When I came to get her she was limping. So, I took her home immediately and put her in a warm bath to try to ease any pain/discomfort she was having. The rest of the evening was filled with tears.

Luckily, Mia has an appointment tomorrow morning with Mary, her physical therapist. We haven't visited with Mary since November 2008, so it will be very nice to see her. Mia LOVES Mary!! We are very blessed to have found such an awesome physical therapist. Mary is the best!

We have an appointment scheduled for May 7, 2009 to meet with Dr. Lopez, Mia's rheumatologist. She has been going to Dr. Lopez since she was 22 months old. Our goal at PT this week and next is to get the swelling down before her appointment with Dr. Lopez.

So, we are back to a very restricted diet for Mia - no gluten, no dairy, no sugar. Wow...every toddler's dream diet!! Poor girl! I am even considering taking her off of eggs again if the swelling does not go down soon. Mia LOVES eggs, so we shall see.

Please keep Mia in your prayers. We will continue to stand on the scriptures I posted in the beginning of this journey and believe for a complete healing for our daughter.

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

Back To The Drawing Board!

As you may remember, we received a very good report from Mia's rheumatologist back in December regarding her JRA. He said there was no evidence of arthritis in her body and said we could start weaning her off of the naproxen. Overjoyed with this wonderful news, we did something very, very stupid - we let our guard down. Her rheumatologist said the weaning process would take three to six months. We did it too fast.

We were fairly consistent in January. When February came, we started to slip up missing doses here and there until she was completely off the meds the entire month of March. During that time I added white potatoes back into her diet and she has had more white sugar than she normally does. Jellybeans and peeps are a huge fave in our family. Darn Easter!! :)

I think it was a combination of several things - we were tired, exhausted and worn out from the various doctor appointments, therapy appointments and daily medications we were giving Mia. We needed a break. I needed a break. The previous year had been such a horrible one for our family and when we received this bit of hope, we breathed a huge sigh of relief thinking everything was over. The other side of it was we were curious to see how she would do with out the meds and just on the diet alone. Guess we know now, don't we...

Mia had her eye appointment today with Dr. Zuckerman. While she got a good report about her eyes, her doctor took a look at her left knee and wanted to know what happened. So, I admitted to her that we slacked, but told her she is back on the meds again. She warned me about how easy it is for uveitis (inflammation in the eyes) to suddenly pop up out of nowhere when a child is having a flare. She said she's seen it too many times in patients, especially young girls with JRA.

So, that's where we are at. Mia is back on naproxen twice a day, cod liver oil once a day, and we will be starting up physical therapy again. We will also be meeting with her rheumatologist this month...and, hopefully, we won't get scolded for our stupidity.

Well, friends, that is the latest news in our journey...we are smack in the middle of Round Two with JRA. At least we know what to do this time around. Now, we just need to get Mia's inflammation down and get her back to feeling better. Please continue to keep her in your prayers (and us, too)!

Barometric Pressure?

As I have mentioned in the past, the purpose of this blog is to record and JRA issues Mia may be having. She has been fine for the last month or so...until today. She has been complaining all day long that her left knee has been hurting. So, I did some of her at-home PT exercises with her and applied dry heat to the joint to help loosen it up.

In the past, whenever we were about to get a snow storm, Mia's joints swelled up from the barometric pressure. It became a pattern: storm + pressure = inflamed joints. And we are expecting another major storm tomorrow, so I am going to see how she is after that. If she isn't better in the next few days, I am going to call her PT to schedule an appointment.

Stay tuned.....

"No Evidence of Arthritis"

Today was a big day, a HUGE day for Mia (and for our family). We took Mia to see Dr. Lopez and after examining her joints he told us...

"There is no evidence of arthritis in her body."

Praise God!! We are so completely happy! It has been over a year now since Mia's initial diagnosis of JRA. It has been a long, hard road for all parties involved. Medicines, physical therapy sessions, occupational therapy sessions, leg braces, MRIs, ultrasounds, x-rays, TONS of blood work, TONS of tears (from both daughter and mommy) and now, finally, we are on the other side of things! It feels amazing. More than amazing....it is a dream come true! Our daughter no longer limps, no longer drags her leg when she walks, no longer cries in the middle of the night while she is sleeping. She runs, climbs, jumps and plays like any other child her age. She just finished eight weeks of ballet classes and enjoyed every minute of it. She is blessed. We are blessed!

So, what's up next? Well, her doctor gave us permission to start weaning her off of the naproxen! He said it will take three to six months to wean her off of it because they keep the dosage the same, but don't increase it as Mia gets bigger. So, provided she doesn't have any flare-ups between now and then, we will be able to take her off of the medicine she has been on for over a year now. We will have to keep up with the eye doctor appointments to check for uveitis and pay a visit to see Dr. Lopez three months from now, but that is it! Hooray!!!!

Thank you to everyone who has prayed for Mia and for us. We greatly appreciate you standing with us and believing for our daughter's health to be completely restored.

We have overcome! :)

Back to the Rheumy!

This week is the BIG WEEK! We are heading back to the rheumatologist on Thursday morning for another check-up for Mia. We are believing he will still be impressed with the improvements she has made and maybe, just MAYBE, we can start weaning her off of the naproxen. She has been on it for over a year now - 7.5 mls twice a day.

So, please keep Mia in your prayers this week!! I will post an update on Thursday to let you know what the results are of the appointment. :)

Slowing Down...

As you can tell from the dates of my posts, things are slowing down...with JRA. And we couldn't be happier! We are at a different place now than we were a year ago - physically for Mia; emotionally for us. We are stronger. We have come through a very difficult time for our family. And, we are very, very blessed!

Mia is still on a gluten-free, dairy-free diet. We have added eggs back into her diet (this past July), to which her body doesn't seem to mind. And it makes it MUCH easier for me when it comes to baking and cooking for Mia.

She is still seeing a physical therapist, but only once a month now. She still takes 7.5 mls of naproxen twice a day and 1 tsp. of cod liver oil every morning to help keep her joints loose and keep the inflammation down. In December at her next rheumy appointment, we are hoping Dr. Lopez will say we can start weaning her off of the naproxen. And then we will start adding things back into her diet to see what causes a flare.

Here is an update to give you an idea of how much better Mia is doing:

Comparison of last year to now...starting from head to toe:

• Last year: her elbow was bent at -8 degrees. She would cry or pull away from you if you tried to straighten it.
• Now! Her elbow is almost straight. On her worst day, it is bent at -3 degrees.
  
  
• Last year: her knee was bent at -20 degrees and was as big as a tennis ball. She was dragging her leg and limping all of the time. She could not run, jump and could hardly keep up when walking. People were constantly asking me if she injured her leg or if she fell. It was awful!!
  
• Now! She will be finishing her very first ballet class this Saturday. I almost cried during her very first class...it was hard to hold back the tears. I was SO PROUD!! She can run, jump and dance without any difficulty. She has minimal fluid on her knee, but she does have a boney overgrowth of cartilage on the inside of her knee that has developed from the arthritis. She still can't hyper extend her leg (get her heel off of the ground) when she is sitting down and it is straight out in front of her, but we know that will come in time. She is starting to alternate legs when going up the stairs. We are still working on helping her to get over her fear of going on the climbers at the park, but know she will eventually conquer her fear and not feel like she has to be cautious to protect her joints.
  
  
• Last year: At her initial diagnosis, they said that her ankle had some swelling and fluid on it. One month later, her rheumy said her ankle was fine. :)
• Now! Her ankle is still fine...still no swelling (nor will there be any!)
  
  
• Last year: Her big toe on her right foot was swollen and very large, along with her second toe on her left foot. This is the first thing that alerted us that there was a problem when she was 15 months old.
• Now! Her other toes seem to be catching up to her big toe and it seems to be getting smaller.

Overall, she is doing great!! She is much more active than she was a year ago. It is great to see her so happy. We look back on this past year and are so proud of the things she has overcome. She had to endure a lot, especially in the beginning, and came through it with flying colors. She is looking forward to sledding and building snowmen this winter...what every normal, healthy child enjoys doing. She is tackling life head on, full throttle - leaving JRA in the dust!

Two GOOD Reports!

Well, Mia had her appointment with her rheumy last Thursday and he said everything looks good! He did notice a bit of swelling and inflammation on her left knee still, but very minimal. Also, he was concerned because she still can't hyper-extend her left leg. She can with her right, but not with her left.

So, for now, he wants us to continue on the naproxen and see him in two months from now for another follow-up appointment.

On Friday, Mia went to the eye doctor's again for her every-three-months appointment. The doctor dilated her eyes this time and took a peek all the way in the back and there are no signs of uveitis!! Praise God! :)

That's the latest. We've come a long way and will continue to keep her on the diet until she is off of the naproxen completely. Hooray!! :)

We are continuing with PT and OT (once a month now for both). Also, Mia has an evaluation coming up in the next couple of weeks with our town's public school system to get her transferred over from E.I. to their program. She can only be a part of E.I. until the day before she turns three (which is two months from today!). I've heard great things about their program and am hoping the eval goes great and they accept her so she can receive PT/OT services from them.

GF Rice Crispy Treats!

I get excited when I find new GF-DF treats for Mia and am constantly on "the hunt" for different. Last night, I was out at Trader Joe's and happened upon these little tasties:

I am really excited about them, too, because she has a bunch of parties coming up at school and I don't want her to feel left out! Three cheers for TJ's rice crispy bars!

One Year Later...

Hello! 

I've taken a bit of a break because my parents have been in town with us and we have been quite busy over the last several weeks. Mia got moved up to the next class at school (she is now in the three-year-old's class with her new teacher, Miss Linda). And we've attended birthday parties, gone to the apple orchard and played outside as much as we can because the chilly winter air is right around the corner!

So, we are in our third month now since Mia's last visit with Dr. Lopez and it has been a NICE break...for all of us. We have reduced her PT & OT to once a month and she has been doing great. Mia is now in ballet classes every Saturday morning (which has been approved by both her doctor and her therapists). She is still taking naproxen twice a day (7.5 mls), but no flare ups or inflammation issues!!

We meet with Dr. Lopex next Thursday for a check-up. Three months from THAT appointment, if Mia continues to do as well as she has been doing, he said we can start to wean her off of the naproxen. Hooray!

We have added eggs back into her diet...so far, so good! However, we are waiting on the dairy and the gluten until after she is off of the naproxen completely because it would be hard to tell if either of those things are affecting her while she is on the medicine.

Also, Mia goes back next Friday for another appointment with the eye doctor. This time they will dilate her eyes to get a good look all the way into the back to check for inflammation, which we are believing there will be none of!

All-in-all, it has been a nice break..from everything. It was one year ago this month that she was diagnosed...and it has been a rough year for all of us, but especially for her. I pray we go into the new year a bit better than we did last year. We were completely blindsided by JRA and I am definitely ready to say goodbye to 2008 (for many reasons...more than just JRA). Mia endured a ton of appointments, many therapy sessions, blood work (again and again and again!), an MRI, ultrasounds and x-rays, a leg brace, medicines, iron supplements for anemia, bandage wraps for her elbow, many STIFF (and tearful) mornings, and one horrible flare-up last November. She is no longer dragging her leg or limping when she walks. And her elbow is almost there...bent just a few degrees. She has been running more, jumping more and enjoying life more. Looking back, I am SO GLAD we put her on the diet when we did because I don't think we'd be where we are right now if we didn't. Best decision we made for her!

It is so good to be on the other side of things now. :)

Birthday Parties

Not only does Mia have a birthday party to attend this Saturday for one of her classmates at school, but I was informed earlier this week that two of Mia's classmates are celebrating their birthdays this week at school, as well. Therefore, there will be TWO birthday parties this Thursday and one more on Saturday. Suddenly, I get this sinking feeling in my stomach. Birthday parties means "party food" and "party food" means pizza, ice cream and cake - three things Mia can't have.

Lucky for me, one of Mia's teachers is a friend of mine who informed me what the menu will be: cupcakes at 10:00 a.m. (why anyone would give three year olds cupcakes this early in the morning is beyond me!) and then pizza and MORE cupcakes for lunch. Woah! Can anyone say "sugar overload?" Good luck getting those 20 kids down for naps! Ack!

So, in the attempt to make sure my daughter does not feel left out, I headed out to Whole Foods, hoping to hunt down a GF-DF pizza just for her. I've already made GF-DF cupcakes for her - piece of cake! Heh heh! But, Mia hasn't had pizza in almost a year now. Birthday parties can be a BIG headache for parents who have kids who are on special diets.

However, I struck it rich today! Low and behold, in the frozen foods isle at WF, I discovered these:

Amy's Single Serve Non-Dairy Rice Crust Cheeze Pizza

I quickly snatched up three of them (costing an arm and a leg - about $20) and made one for Mia for dinner tonight to try it out on her before sending it in with her to school tomorrow. She LOOOOVED it! And I almost cried....and then quickly regained my composure after Mia gave me this funny, teenageresque look like, "Mom...what is wrong with you??" LOL! It has been sooo long since she has been able to eat something like that. And I enjoyed every moment of it. Probably more than she did!

Suddenly, I love birthday parties once again. :)