Jennas JIA & Uveitis

It's "JUST" Arthritis, It's Not Serious

2012-01-18T08:49:00.000-08:00

Allow me to paint a picture for you, please. If I do this right, then you will never utter the words, "It's just arthritis, it's not serious", ever again.
Friday night in our house is "shot night". Nope, not talking about pouring my favorite liquor into a tiny glass and tossing it back. I'm talking about injecting our youngest child with toxic medications in order to attempt to control her chronic illnesses and stop them from destroying her body. That in itself is a horrible position for a parent to be in. Which is better? Taking our chances with the diseases destroying her? Or take our chances with the medications destroying her? Hmm....what would you do if it was your child? I pray that you never have to face that decision.
So, back to shot night. We do this every Friday. We have been for the past 4 years. But it's not just Friday really. The countdown starts as soon as the injections are done. 7 days, 168 hours, until we have to do this all over again. The stress and anxiety is every day because you know it's coming around again. There is also the daily reminder of the injections thanks to the daily meds she has to take to attempt to counteract the side effects of the injections. Though those don't always work so well. Then the alarm goes off on Friday letting you know that it's time. You get the med basket out, prepare the syringes, have your child get her comfort items and get in her favored "shot spot". All the while she is crying, begging you to please not do this, please not hurt her, asking you WHY are you doing this to her again. Now it's time, everything is ready. In our house, Daddy does the injections, Mommy does the hand holding and soothing. Every week another chunk of my heart breaks listening to her screams, seeing the look of absolute terror all over her face as the medicine goes into her and burns like acid. I hate it. I hate everything about it. The real kicker is that despite these medications, she still experiences periods of pain, stiffness, discomfort. You know how your body feels when you have the flu? That feeling of, "Man, I feel like I've been hit by a bus.". Yeah, imagine being a child and LIVING with that feeling.
Still think it's "just arthritis, nothing serious"?

It's a Fundraiser!!!

2012-01-13T08:10:00.000-08:00

A big thank you to my wonderful friend and neighbor Michelle for this! Michelle is a Sr. Director with the direct sales company Thirty-one. This is an AMAZING company based on the Proverbs 31 woman and they sell amazing product! They are also a company that likes to give back and that is exactly what Michelle is doing. I can't thank her enough! Details on the fundraiser as well as contact info for Michelle are below. Please share this info with everyone that you know! Thanks so much and happy shopping!!

"Pain is weakness leaving the body."

2012-01-10T07:43:00.000-08:00

Apparently this phrase has been used by the Marine Corp for many years. Not sure where I've been, but I had never seen or heard it until today. Or, I did but it didn't register. So today I was at the gym, moving and grooving on the elliptical, listening to my Pandora dance cardio station and I see this on a tshirt. "Pain is weakness leaving the body." I read it over and over again as the guy wearing the shirt is running on the treadmill in front of me, Taio Cruz's Dynamite blasting into my ears, and I had a moment. It was all I could do to not break into a fit of tears right there in the middle of the gym. This must explain then why kids with Juvenile Arthritis are so strong. Pain leaves their little bodies ALL THE TIME. So if this is true, and why not, then if all this pain (insert weakness) is leaving their bodies, then what is left? STRENGTH. It's kind of ironic considering that even if these kids wanted to, they can never be a Marine. But, they are just as strong as a Marine. It's just a different kind of strength.
I decided right there on the spot that I too would adopt this philosophy. I am going to work out like it's my JOB. I am determined to make my body strong, lean, mean and healthy for Jenna "Bean" (hahaha, that rhymed!) and all the other 300,000 kids just like her that can't.

"You have BEAUTIFUL ankle bones!"

2011-12-02T03:54:00.000-08:00

That is what Jenna's rheumatologist said to her at her 3 month appointment this past Wednesday. "You have BEAUTIFUL ankle bones!" Who would have thought that would be music to our ears? Before she started her exam I told her that while I don't think Jenna is at 100%, I still feel she is the best she has been since her diagnosis in August of 2008. After examining Jenna, the doctor agreed. Jenna is doing GREAT. I expressed my concern over the fact that she is still experiencing periodic pain and stiffness. When a storm blows through, when the temperature drops, sometimes when she wakes up or after a car ride. I asked her, "Is this just her normal? Is this okay?" She assured me that yes, this is okay and perfectly normal. Even a child that goes into remission can still experience all of this. She does, after all, still, have arthritis. Even if she hits remission, she won't be cured. Sadly, surprisingly, this is music to my ears. I could not be more happy. She does have an awful lot of tightness behind her knees. Again, perfectly normal for a child with arthritis. Her homework before her next appointment is to get that stretched out and be able to at least reach her ankles with her fingertips. Right now she can't even sit up, she is so tight. Now, you may be thinking, "Wow she is doing so great she must be ready to taper meds!" Yeah, nope......read on.....

Jenna also had her 3 month ophthalmology appointment on Wednesday. We didn't get terrible news, but it wasn't what I had hoped and prayed for either. After nearly two years of hearing Dr. Wallace say clear and quiet, I heard the dreadful word CELLS. She isn't in a full blown Uveitis flare right now. He assured me that this could go either way. We could come back and she will be in a full blown flare. Or, these few cells could just go away all on their own. Not terrible, but not so great either. Had her eyes still been clear and quiet both doctors would have been comfortable tapering meds. Not now. These few cells have taken that chance away. Even when we go back, if they are gone, it will be risky to try tapering now. We are so blessed with amazing doctors. Dr. Wallace took the time to very patiently reassure me that since she isn't having any major, adverse side effects from the meds she is on, keeping her on them right now is really the best thing. Overall she is doing well on them, taking her off of them right now could be disastrous. We are also blessed that he understands the dangers of steroid eye drops. We are not putting her on a course of drops at this time. We are waiting to see what happens. When we go back to have her rechecked, if the cells are still there, then we will start drops. AND GET HER OFF OF THEM QUICKLY. So very thankful that he is educated on this. Sadly, many doctors are not. They, for whatever reason, don't understand the dangers of these drops being used long term. We will need to do a med change to in order to get her off the drops. But we will cross that bridge when and if we get to it.

Overall, I still consider this to be a great day for appointments. Her joints look and feel great! Her eyes have hit a teeny, tiny, minor bump in the road. It will be okay. No matter the turn it takes, I have faith, it will be okay.

A much needed reminder.....SLOW DOWN

2011-11-03T11:14:00.000-07:00

A friend posted this to her Facebook just now. I felt compelled to share with everyone that I know. Please, read, absorb, follow through and pass it on.

"Long ago you came to me, a miracle of firsts.
First smiles and teeth and baby steps, a sunbeam on the burst.
But one day you will move away and leave to me your past,
And I will be left thinking of a lifetime of your lasts.

The last time that I held a bottle to your baby lips...
Last time that I lifted you and held you on my hip...
Last time when you had a binky stuck inside your mouth...
The last time that you crawled across the floor of this old house.

Last time when you ran to me, still small enough to hold,
Last time when you said you'd marry me when you grew old.
Precious, simple moments and bright flashes from the past,
Would I have held you longer if I'd known they were the last?

Your last few hours of kindergarten, last days of first grade...
Last at bat in Little League, last colored paper made..
Last time that I tucked you in for one last midday nap...
Last time when you wore your beat-up Green Bay Packers cap.

Last time you caught a frog in that old backyard pond...
Last time when you ran barefoot across our fresh-cut lawn,
Silly scattered images to represent your past.
Would I have taken pictures...if I'd known they were the last?

The last dark night you slipped in bed and slept between us two,
When last I read to you of God or Horton Hears a Who!
Last time that I smelled your hair and prayed after your shower...
Last time that we held devotions in the evening hours.

The last time you were M.J. in our games of give-and-go...
Last time that you made an angel in the melting snow.
I never even said good-bye to yesterdays long passed.
Would I have marked the moments...if I'd known they were the last?

Last piano lesson, and last soccer goal you kicked...
The last few weeks of middle school, last flowers that you picked.
Last time that you needed me for rides from here to there...
The last time that you spent the night with that old tattered bear.

Last time that I helped you with a math or spelling test,
Last time when I shouted your room was a mess.
Time and life moved quicker, taking pieces of your past.
Would I have stretched the moments...if I'd known they were the last?

The last time that you needed help with details of a dance...
Last time that you asked me for advice about romance.
Last time that you talked to me about your hopes and dreams.
Last time that you wore a jersey for your high school team.

I watched you grow and never noticed seasons as they passed.
I wish I could've frozen time, to hold on to your lasts.
For come tomorrow morning life will never be the same.
You'll pledge forever to your girl, and she will take your name.

And I will watch you, knowing God has blessed you with this day.
I never would have wanted, Luke, to somehow make you stay.
They say a son's a son until he takes for him a wife.
You're grown-up now; it's time to go and start your brand new life.

One last hug, one last good-bye, one quick and hurried kiss...
One last time to understand just how much you'll be missed.
I'll watch you leave and think how quickly childhood sped past.
Would I have held on longer....if I'd known it was your last?"

Poem was quoted from the book, "Rejoice", by Karen Kingsbury.

Thankful

2011-11-02T12:50:00.000-07:00

Many times I am asked how I get through the day without crying. I answer that honestly, some days I don't. Some days I do cry, I do get angry. I think that's normal. But overall, I know that we are blessed, despite our trials. Of course I have days that I wish that our daughter wasn't battling a chronic, painful disease. But, that's the hand we were dealt. I recently had a friend tell me that she is "Currently having a disagreement with God." You see her son was diagnosed with a chronic illness. She hasn't yet seen the gift in it. Or, possibly she has, but still can't "forgive God" if you will. That may offend some people but that's how I see it. When we or a loved one are handed a crappy deal, we get angry with God. What do you do when you are angry? Stay angry, or forgive. I see the blessings that her sons disease has put in her life, I think she does too, but she isn't THERE yet. For the most part, I am okay with where we are. Sure, Jenna has daily pain, wakes up stiff and unable to bend her legs or flex her feet, takes way too many medications, gets sick from those medications, has muscle weakness, walks with a limp, struggles to keep up with her peers. But you know what? I have recently learned to just watch her, just silently observe. I'm still not sure if she even notices any of these things about herself, but if she does, she doesn't seem to mind. So why should I? She adjusts and presses on, so why shouldn't I? She really is quite amazing! Just last night I was watching her sit in the recliner, playing her brother's guitar (she is teaching herself!). She stopped strumming, wiggled around, adjusted her legs, sat and looked at them for a moment, it was clear they were hurting her, then she settled and began strumming again. AMAZING! Yesterday morning I heard her coming down the stairs on her bum, slowly, because her legs and feet weren't cooperating. When she got to the bottom, she stood up, got her backpack and went about the tasks of getting ready for school. AMAZING! There is beauty in everything, even in suffering. It is up to US to find that beauty!
There is a Mom right now, sitting in the hospital with her one and only baby girl. They are on day 27 in the hospital. On day 28, she celebrates her 5th birthday. That will mark 5 years of being sick. Now, how would YOU handle all of this. Here is how this Mom handles it....with grace and thanks.....

Some of the most beautiful man made things I have ever seen were all the amazing stained glass windows in Paris. They remind me of Eleanor. When the world looks at her unfortunately they see a bunch of broken glass and pieces that don't fit perfectly. When I see her I see all the small pieces coming together, the many breathtaking colors forming an awesome little girl.I will never understand why God made her so different but I know that she was made perfect and in His image. She is exactly the little girl He knew she would be and I am blessed beyond belief to not only know her but to be able to say she is MINE!

World Arthritis Day

2011-10-12T06:46:00.000-07:00

Today, October 12th 2011 is World Arthritis Day. A day to bring awareness to a disease affecting nearly 50 million Americans and 300,000 children. That's just in America! I really would like a WORLD number affected. We ask for just one day, one day out of 365 that the world hear and learn about this disease. Not a month, a day. One day to wear blue, light up blue and talk, out loud, in public about ARTHRITIS. It is almost as though people are ashamed. Arthritis doesn't get the same glamour as some other diseases. I just don't understand this. Not that other diseases aren't worthy of the attention and awareness, but really. In the month of October, try going anywhere without seeing the color pink. A few months ago it was another disease asking the world to go blue, and the world did. And who doesn't recognize the awareness color of yellow and what that represents. All of these diseases are deserving of attention. I repeat, ALL OF THEM. Including ARTHRITIS. Maybe, just maybe, one day my daughter's disease will get the attention it needs. Or better yet, a cure will be found and we can make this all a distant memory.
She asked me this morning, "Why is today World Arthritis Day?". So that people will know, so that maybe they will learn and understand.

Is it too much to ask?

2011-09-20T06:50:00.000-07:00

I just want her well. I want her to know a day, a full 24 hours of feeling WELL. I know that she can't remember what it's like, because lately, I can't even remember it. I can't remember what she was like before she got sick. Was she always this angry? Was she always this emotional? What were her habits? Did she always act this way? I feel like I am mourning the loss of my WELL child. Now, do not get me wrong. I do realize that she is much better off than some children, I get that. But some days, that just isn't enough to soothe the ache that is in my heart. I WANT HER WELL. Is it too much to ask? I used to pray for, hope for remission for her. Remission you say? Like cancer?? YES, remission, like cancer! Because, like cancer, Juvenile Idiopathic Arthritis has NO CURE. So, as of right now, all that we can hope for is remission. As of right now, she can never be 100% rid of, cured of this disease. This disease that encompasses and endangers her entire body. At the JA Conference this Summer I got a new perspective on remission. I was able to meet many teenagers and young adults that have never known remission, yet are leading full, happy lives. I then realized that if Jenna never went into remission, as long as she was happy, I would be okay. Well, today I'm not feeling it. Today, I WANT HER WELL. Is it too much to ask??
Today I feel like screaming as loud and long as I can until I can make people understand what we go through. Today I feel anger and resentment at the hand we've been dealt. Tomorrow is another day...

2011 Charlotte NC Jingle Bell Run/Walk For Arthritis

2011-09-08T05:59:00.000-07:00

A few months back, I got an email from our local Arthritis Foundation office asking me if Jenna would like to be the Youth Honoree for the 2011 Charlotte Jingle Bell Walk/Run for Arthritis. WOW! I felt so honored that they thought of my girl. What an amazing opportunity for us to do what we are so passionate about, raising awareness that kids get arthritis too. At first Jenna was not thrilled about this. She is a very shy, introverted child. She does not like any attention drawn to her. At the JA Conference she seemed to gain a bit more acceptance and understanding of the disease. Somewhere along the way she has also gained some sort of self assurance, some confidence maybe? She is apparently performing songs and dance in her kids class at church. She is very excited about a concert at school in which she hopes to be chosen to play an instrument. She has also gotten excited about being the Youth Honoree for the Jingle Bell Walk/Run. :o) If you would like to donate, join our team or form one of your own, you may do so at charlottejinglebellrun.kintera.org

The Eyes

2011-09-08T05:48:00.000-07:00

So, the GREAT news is that her eyes remain inflammation free! I am still so stunned by this. That means that since December of 2009, the Uveitis has not acted up for her. That is incredible given the difficulty we had getting it under control. The combination of Humira plus Methotrexate continues to keep her eyes healthy. It amazes me, it brings me great joy, yet I can't help but also feel a bit of guilt. You see, it isn't so easy for everyone. There are still so many little ones that struggle to find the right combo of meds to tame this beast. I hate that. I feel so lucky, so very blessed. And again, I must stress, to ALL of those that doubted and STILL doubt our move down here, had we stayed in Maine, this would NOT have happened.
Since her eyes are still healthy, we are not comfortable playing around with her meds at this time. Despite the fact that her joints continue to flare off and on, it just isn't worth the risk to her eyes to play with the meds. I called her rheum office and scheduled her 3 month follow up and asked that the nurse please speak with Dr. V about keeping meds the same for now. I got the call back before days end. What a relief, she is FINE with keeping her on the MTX and Humira for now and we will see how she is at her appointment in November. PHEW!
So for now we wait and see, again, what this disease will do. It is so hard to just let things be. To not be hyper vigilant, always on edge, questioning every little thing. I don't even know how to explain it to someone with a healthy child. But, for now, I am going to just let things be as they are. I am going to try not to ask her every morning, every afternoon, every night, "How are you? Are you okay? Are you sure?" I need to back off. I need to TRUST that if something is wrong, she will tell me. We'll see how this goes.

She was so upset about missing art class AGAIN this week. It's her most favorite enhancement class. What a pleasant surprise this was. The Art Cart was out at Duke Eye Center. :o)

SO glad that's over with....

2011-09-02T06:06:00.000-07:00

The last time that Jenna saw the rheumatologist at Duke Children's Hospital in July, Dr. V not only detected a flare in Jenna's right ankle, but she also suspected jaw involvement. This REALLY had me worried. I don't know much about arthritis in the jaw, but what I do know is that it is difficult to treat, there is much controversy not only on how to treat it but if to treat it, and without treatment the jaw will likely deteriorate. The ankle I could deal with, the jaw I could not. An MRI of the jaw, done under sedation was scheduled, as well as a follow up with Dr. V. (side not: at this appt in July, the opth found her eyes to still be clear. YAY!) We went back up to Duke this past Wednesday the 31st for her MRI and follow up with Dr. V. What a long day that turned out to be! A 10:00 MRI turned into a 12:45 MRI. A 1:40 appointment with Dr. V turned into a 3:30 appointment with Dr. D. *insert sad face* We really wanted and needed Dr. V. Lesson learned, speak up for what you want and or need at the doctors. The amazing news of the day is that the MRI showed no current jaw involvement and no deterioration from past jaw involvement! OH PRAISE GOD! Okay so, Dr. D examined her, while she slept, and couldn't find any signs of active arthritis. Hmmm....just a month ago Dr. V detected a flare in her ankle, 3 weeks ago at home she was hot, swollen and in pain in her knees, wrist, ankle, elbow and hip. Hmmm....so what's this all about?? Dr. D also mentioned that in Dr. V's notes from her July appointment that it may be time to switch meds. Ooooookay, she didn't say that out loud, just put it in her notes. Lesson learned, ask for a copy of notes. So I am still more than a little bit confused as to what is going on. Is she flaring? Do we need to switch meds? If it isn't a flare, then what is with the swelling and heat in her joints? At this point we are waiting until we can get her eyes checked by Dr. W. We will be making the trip back to Duke next Wednesday for that. If her eyes are flaring then there will be an immediate phone call over to Dr. V and we will go straight over to see her. If her eyes are quiet, then I don't dare switch her current meds. Increase yes, switch NO. So, we wait.....again. If nothing else, these crappy diseases are certainly teaching me patience.

Lets recap lessons learned this week:

* Speak up and get what you/your child needs/wants from a doctors visit.

*Ask for a copy of all notes from all visits

*Always expect the unexpected. You can't prepare yourself for these appointments.

Tell me....do these NOT look swollen to you??

Just a Friendly PSA

2011-07-29T16:24:00.000-07:00

Unfortunately there have been some rather disturbing events this week in my online community of support. When Jenna was first diagnosed 3 years ago I felt COMPLETELY alone. The one thing I managed to find online while searching was a blog written by another Mom. It felt really good to know that there was indeed someone else out there. She and I emailed, texted, phoned, even met up at a doctors appointment. Somewhere along the way I started this blog. It became a source for me to vent through, keep track of Jenna's health (or lack there of) as well as a way to meet others going through the same thing. From this group of blogger Moms we also became a community on Facebook, first as Facebook "friends" and then into a large PRIVATE group. You think private, you think safe right? WRONG, oh, so, WRONG. Let me give you a real easy tip. If it SEEMS incredulous, that's simply because it is. Do not believe everything that you read. EVER. Do your own homework. Want tips? I can let you know some but I won't post them here. You want to be very wary of who you meet online, I mean yes we all know that, but even folks that seem okay, that seem to be going through the same things you are, REALLY check them out before hand. Also, protect yourself. Did you know that there are sick people stealing pictures off of blogs of sick kids to create fake blogs of fake kids of fake families to garner attention, sympathy, gifts and money?? Yep, true enough. Get enough angry Moms together and we can get to the bottom of something fishy. Again, want tips, I can let you know, but not here and you had better believe that I will thoroughly research you before I tell you anything. Due to recent events, many Moms have decided to make their blogs private. I won't be doing that. Finding a blog was my lifeline when we bean this journey. If there is even a CHANCE that I can be that lifeline, then I will keep this public.

Blessed & Thankful

2011-07-24T11:30:00.000-07:00

Today we were able to go back to the church in South Carolina that so generously funded our trip to the Juvenile Arthritis Conference. The two words "Thank You" will NEVER be enough, they will NEVER express our gratitude to these people. Without them we would not have been able to attend the conference. The experience of attending is indescribable. The impact that it had on Kailey, Jenna and myself is intense. While telling of her experience today to the group, Kailey broke down in tears. (okay well I did too but that's besides the point) She told them about her new friend Parker and how amazing he is. She said that Parker is her hero, her inspiration. She wants to be a better person because of him. No matter how sick he is, no matter how much pain he endures, he remains happy and positive. She said that now when she thinks about complaining or she hears another kid complaining, she wants to say, "HEY, GET OVER YOURSELF." For Kailey, this is pretty big. :) In Jenna we see a better understanding of her disease, it's hers and she needs to own it. For me, the bonds formed FAR out way the educational experience. These other Moms are what will get me through this. I just wish that I could somehow express to this group of folks at the United Methodist Church in Fort Mill SC how so very thankful I am. We are TRULY blessed.

You learn to take the good WITH the bad....

2011-07-20T14:50:00.000-07:00

...when living with, or raising a child with, not one but two (or more for some folks) chronic illnesses. Jenna "Bean" went to Duke Children's today for her 3 month routine appointments. Since it's a 2 hour drive each way we do both rheumatology and ophthalmology, plus labs all on the same day. This makes for a LONG day but at least it's done for another 3 months.....typically. Today we started with rheumatology first. I really thought that everything was going to be okay. She still has a lot of pain but I had come to accept that it may be more from muscle weakness and tendon tightness than from the JIA. I even told Larry on the way there, "Maybe they will want to start weaning her meds." Something that I have been so hopeful to try. We saw one of our favorite docs there today. She is so kind, so thorough. I watched as she repeatedly, lightly passed her hands over Jenna's ankles, quietly, with her eyes closed.I don't think I took a breath. She opened her eyes and said, "There is heat AND swelling in this ankle." I told her that Jenna jumped into a too shallow part of the pool last night and hit her foot. Could that be it. Oh the look on her face. I could tell she felt bad. She explained that, no, this is a flare. While it is very possible that the pool incident aggravated it, the flare was already there. My heart deflated. Then, thinking on it.....I knew all along. Yes, the pool incident made it worse, but it was there. She has been "gimping" around up on her toes periodically for some time now with that foot. I just never suspected her ankle. THAT hasn't flared in THREE years!! But that "gimp" walk that she has been doing since last night, it's the very same one she has been doing for at least a month now. Along with her ankle flaring, we have possible jaw involvement now. Something I have wondered about for a while now. I realize that lots of kids don't LIKE to brush their teeth, but with Jenna it is a screaming fight every day and night to get this done. Well, at today's appointment the rheum was spending an awful lot of time feeling the jaw and looking at it, asking Jenna about it. Oh boy. She looks at me and says she wants an MRI done. Her jaw is out of alignment which could mean JIA in her jaw. Oh boy. To top that off, she sin't even sure how she would treat it as there is a lot of controversy over HOW to treat a child's jaw with JIA involvement. And to top that off, she needs to be sedated as this is a time consuming test done in a big, loud, scary machine. So, that is scheduled for August 31st, exactly one week after school starts. GREAT. On that same day we will also see the rheum again to see if anything has changed with the ankle. I didn't even think to ask what we will do if it is the same or worse. As far as I know she can't increase any meds she is currently on. Which leads me to our next appointment....
After her lab work and a trip to the cafeteria to feed the posse (we all went today :D) we were off to Duke Eye Center. I was terrified that since her joints are flaring that her eyes would be too. After being quiet and clear for a year and a half. I got really nervous as Dr. Wallace was making adjustments to the slit lamp. I thought for SURE he was seeing something. NOPE! Guess he was just being thorough! STILL CLEAR!!!!! In my brain I realize that the eyes and the joints can flare independent of one another. It's my heart that's the issue. SO, m fear is that if the current meds are no longer working on her body, but they are on her eyes, and we mess with the meds to control the body, what then happens to the eyes. BUT, One. Day. At. A. Time. Right now I will praise Jesus for my baby girl's crystal clear, healthy eyes. You really cannot beat that.
Also while at Duke today, I finally remembered to register Jenna in the CARRA registry!!! WHY the doctors don't mention this to the patients and families is beyond me. But, at any rate, we remembered. Jennifer Stout, the Clinical Research Coordinator came in to talk to us about it and to have us fill out paperwork. She asked how we heard about CARRA, when I said online she was surprised saying that of 300, only 2 have said they've heard about it online. Interesting. She encouraged me to please share her email, jennifer.stout@duke.edu, on my blog. She said that ANYONE can email her for info. ANYONE, even if you are not a Duke patient or from this area she will get you to the right contact person.

So that's it for now. Follow up on August 31st for an MRI and recheck of flaring ankle.

I realize that I have not yet blogged about the Juvenile Arthritis Conference. Honestly I have been dying to, but I am still completely speechless. Words cannot describe just how amazing this event was. How big an impact it had and is still having on me. Probably always will. I know that my girls took a lot away from it as well. Next year I am hopeful that all five of us can go. Instead of words, here is a video I made.

Surgery

2011-06-08T18:14:00.000-07:00

Really it's a crummy thing anyway when you think about it. Though it's something that we are supposed to benefit from, it's still crummy. Who says, "Oh YAY! Surgery!!"? No one.

So anyway, today was Beanz surgery to place tubes in both ears and remove her adenoids in the hopes that we can drain the fluid and stop the infections. Hey guess what? My kids was difficult. I know, right? You can't even believe it. True story. Ears were first on the agenda. That's where all the trouble started. Her ear canals are oddly shaped. Go figure. The odd shape made it difficult, impossible really, for the doctor to get to her eardrum. SO, he accidentally "scratched" her ear canal. AND, the tube is in, but not in an ideal location. Therefore, it likely will not function properly, will need to come out sooner, and will cause some hearing loss while in place. And this is just the right side. Left wasn't QUITE as bad, but non the less proved difficult and the tube is again, not in the ideal location.

Next up was her adenoidectomy. Was pretty routine, until he couldn't get the bleeding under control. He said we are not talking significant blood loss, but substantially more than normal, more than she should have bled. He feels she must have had some residual meds still in her system. It was my understanding that it was just the Motrin that would cause issues with bleeding. BUT, I read this today in the Humira patient info: Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
Fabulous, right? Her rheum had said that if everything went well that she could resume her meds as usual this Friday. I don't think any of this qualifies as going well. I'll be calling them tomorrow.

She then had issues coming out of the anesthesia. Some of it was normal, disorientation, fighting with all of us to get up and leave. Then there was the issue of her forgetting to breathe. Yuh. In AND out Jenna!! She needed to be put back on oxygen which freaked her out and got her all wound up again. Anyway, once we got her calmed down AGAIN and breathing on her own, we were discharged.

It has been a LONG day. She is in a lot of pain. She is fearful of MORE pain. She is tired and cranky. She is miserable and out of sorts. BOO.

I was going to post some pics but for some reason they all wanted to lay on their side. SO, in lieu of photos I am sharing a song/video. I saw many things today from friends about praising Him, in the storm or the darkness as well as in the light, in the good times. He is in ALL of it. His glory is ours to have. I praise Him, even after the day we have had.

Can someone please throw us a line....

2011-06-06T07:51:00.000-07:00

...because I feel like we are sinking. It's been a rough couple of weeks. The good news is, physical therapy is going well, Jenna loves Miss Shirley. She has her custom made orthotics in her second brand new pair of sneakers in as many months and she loves those too. She is a flip flop and barefoot kind of girl so I though this would be a battle. She LOVES to wear them so I guess that means they feel good.
Now for the bad; Jenna "Bean" is having her surgery this Wednesday. She needs tubes in her ears and an adenoidectomy; routine surgery for a normal, healthy child. Life with a JIA child is NEVER normal and or routine. To prepare her body for surgery her rheumatologist wanted her off her MTX and Humira and the ENT wanted her off the Motrin. The rheum felt that given how long she has been on them, 2 skipped doses shouldn't affect her at all if any. WRONG. Friday May 20th was her last given dose, Friday May 27th was her first skipped dose. By Tuesday May 31st she was miserable. She came home from school complaining that her knees hurt and she wasn't able to fully extend them. I tried to get her into the tub to loosen her up, but she couldn't extend her legs to get them under the water. She laid on her hip and that worked. Since then we have noticed her fatigue worsen. All this time we thought it was a side effect of her meds. Obviously it's the disease. Also joining in on the flare up party is both feet, one ankle, both elbows and a random few digits, this is on top of both knees flaring too. Miss Shirley could see that she was compensating for pain even while doing her PT in the water this past Saturday. Her teachers at church yesterday could see that she was tired and she simply wasn't herself. She has a very grim, stone set face. If she can get through the surgery with no issues then she can have her meds again this Friday. I pray that they work just as quickly as they stopped.
Now, seeing her suffer is bad enough. Knowing that she CLEARLY is nowhere near even a medicated remission is what stinks the most. I want her OFF these meds!!!!! Seeing what a couple skipped doses is doing to her, now we see we still have a LONG road ahead. ):

My 1st Guest Post

2011-05-26T18:36:00.000-07:00

I have had the very distinct pleasure of "meeting" some incredible people while on this journey with my Jenna "Bean". One of them is Jess. Although we have never actually met, she simply exudes a strength and light that can be seen or maybe felt even through the computer. I know, that sounds kind of strange, but seriously, she does. I felt compelled to know more about her journey, her story. So, a few months back I asked if she would be willing to put something together for me. She graciously accepted my invitation to share her story here. I didn't make it through the first paragraph without crying and by the end the lump in my throat was so big I could barely swallow past it. The following is Jess' story, in her words.

My name is Jessica, I am 16 years old, and I am battling Polyarticular Juvenile Rheumatoid Arthritis (JRA). My journey began at the tender age of 2. One afternoon, my mom came home from work to discover my right knee very swollen. She rushed me to the Johns Hopkins Hospital ER where x-rays, labs, and a bone scan (at just 2 years old, I was able to complete this test without any form of sedation) were performed; my right leg from the hip down was placed in a cast as the doctors were puzzled about what was causing my knee to be swollen, they simply figured I had broken my leg. After seeing a specialist, a week later we received the diagnosis of Pauciarticular JRA. I was started immediately on Naproxen, Methotrexate (MTX), and Prednisone to combat the disease. Despite the early, aggressive treatment, within just a couple of short months, the inflammation had spread to literally almost every joint in my tiny body. My disease was then labeled as Polyarticular JRA. At such a young age, I quickly adjusted to my new “normal”. I learned to cope with the excruciating daily pain, injections every week (I tried my best to be brave), and many visits to the Pediatric Rheumatologist and Pediatric Ophthalmologist (did you know that JRA can cause eye inflammation?). Another hurdle I learned how to jump early on was getting monthly blood work; I can safely say by age 3, I became a pro… I completed my first tear-free blood test! I was catching on quickly…

Around age 4, my mom and I relocated to warm and sunny South Florida. Despite remaining on the anti-inflammatory, MTX, and steroids for about 2 years, my joint inflammation remained and even progressed. My medications were increased and I started Physical and Aquatic Therapy. I loved Aquatic Therapy… That heated pool was the only place I was free to move and be almost pain-free. Physical Therapy on the other hand was a nightmare, I did not like it! Sessions would wear me out and cause me to be in agonizing pain… But after 6 months of enduring this treatment plan, the majority of my inflammation was gone. I slowly improved and for the first time since diagnosis, I was able to begin weaning off the Prednisone. Eventually, I had officially achieved my first medicated remission! I still required treatment with the MTX and anti-inflammatory, but I was finally able to experience life inflammation-free. This remission, however, was short-lived. Just a few months later, the inflammation came back with a vengeance; my Rheumatologist suggested I have two cortisone injections in both knees. I underwent this procedure at 5 years old without any form of anesthetic. Unfortunately, the swelling did not respond at all to the steroid joint injections. My meds were increased again, and we found ourselves dealing with the beast – Prednisone – yet again. This trend continued for the next couple of years – I would begin to flare, be placed on steroids and have my MTX dosage increased (sometimes I was given upwards of 30mgs), then the inflammation would get better and meds would be decreased… Only to find myself flaring yet again. This vicious cycle was frustrating because the range of medications that could be given was limited and, as a result, I ended up on steroids and higher doses of MTX for every single flare. Regardless, I remained very active! I loved dance, played soccer, and karate was my favorite sport. I knew I had arthritis, but I also knew I’d never let it have me!

Around age 11, I experienced yet another flare after doing well for a short period of time with minimal inflammation. My MTX was increased (again) and this time, my liver had a nasty reaction to the chemotherapeutic drug I had been on (without break) for the past 9 years. The Rheumatologist decided he wanted to biopsy my liver. I was placed on steroids (again) and my MTX dosage was decreased in hopes of showing improvement. A few months later, I was told I had achieved my second medicated remission! Prednisone was ended then, and for the next 3 years I continued to take my MTX, but I lived completely without inflammation.

I felt great... My mom was ecstatic… We actually thought we had actually conquered this awful monster some like to call “Arthur”… Until December of 2009 when a small amount of inflammation was detected in my right knee. Around this time, I was also diagnosed with kneecap misalignment in my right knee and osteoarthritis caused by the damage the JRA had done to many of my joints. In January of 2010, I started having chest pains and it was discovered that I had high blood pressure. Because JRA can result in extra-articular manifestations that include inflammation of the internal organs, I was quickly sent to a Pediatric Cardiologist and a Pediatric Nephrologist for evaluation. After many tests, the worst possibilities were ruled out, and I was diagnosed with secondary hypertension and costochondritis. The swelling in my knee was minimal, but stubborn, and it remained that way until the summer of 2010. I had a massive flare that left me barely able to walk. It was difficult to relearn to cope with the pain I had been without for so many years. I was unable to volunteer with my sweet kiddos at the Children’s Hospital I visit every Friday, hang out with my friends, and enjoy my summer. That is when we decided to start on a new biologic medication called Enbrel. When I was younger, these types of medications were either unavailable or very new, so they were never an option. Within 2 days of my first injection, I was able to move again! I was so blessed to have such a great response as many kids with JRA don’t respond as well to medications and need much more potent medications.

I was doing well on the Enbrel for a while, almost close to a third medicated remission. Then, other issues started to arise. I had been dealing with GI problems for about a year, but around November of 2010, they started to get worse. I was referred to a new GI specialist who decided to perform some tests. She took a total of 11 biopsies, 6 of which showed mild inflammation. Today, my Rheumatologist believes this may be an indication that I am in the early stages of developing Crohn’s Disease; having JRA (an auto-immune disease) increases your risk of developing other auto-immune disorders. I am to begin a new medication called Humira on June 15^th, 2011. As if that’s not enough, due to all the anti-inflammatories I had taken over the years, I now have Gastroesophageal Reflux Disease and a recent Gastric Emptying Scan confirmed a diagnosis of Gastroparesis (GP). I was started on Erythromycin to increase the motility in my stomach; sadly, the Erythromycin didn’t work. On June 2^nd, 2011, I am scheduled to have intra-pyloric injections of Botulinum Toxin (Botox) to help the GP; if this works, I will have Botox injections in my stomach on a routine basis. Unfortunately, due to the severity of my symptoms, my GI specialist believes I may also have a motility disorder of the intestines. Within the next few months, I will travel up to Children’s Hospital Boston for more specialized testing. What does this have to do with JRA? 14 years after diagnosis, I am still on Methotrexate, a chemotherapy drug. We don’t know what has caused these GI disorders… Perhaps damage from long-term use of such harsh medications? Only time will tell…

Living with JRA is both a blessing and a curse. I don’t want to say it has taken away my childhood, but it has caused me to “grow up” a lot faster than most. When you are forced to confront pain, many pills, shots, and scary tests at such a young age, you are also forced to mature way beyond your years; I was often referred to as an “old soul” when I was little. Being a teen with JRA can be challenging. One of the most difficult things I face would have to be the lack of understanding that others have of JRA. Other kids think I’m overreacting when I’m limping when, unfortunately, it’s something I just can’t control at times. Perhaps having to take so many pills and give myself so many shots is even more difficult. The majority of my friends cannot recall the last time they got a shot… I gave myself one last Saturday. Having JRA has certainly taught me who my true friends are. I am so blessed to have such a supportive group of friends. My family, though, get me through everything. My mom is my rock and I’m so blessed to have her. She has fought so hard for me over the past 16 years and she is my best friend; I love her to death!

Today, I still battle with the same vigor as I did when I was first diagnosed with JRA. I am currently taking a total of 18 medications on a routine basis to manage my diseases, but I try not to let my JRA hold me back. I try to always look on the bright side and view my cup as “half full”. In a way, JRA has awarded me many blessings. It has given me compassion for others in pain; I devote much of my time to volunteer work, specifically with sick children. It has given me a greater outlook on life; I know my journey has been a long and tough one, but there are so many others that have it so much worse than I do. JRA has also strengthened my faith. Having JRA has allowed me to meet some pretty amazing people and inspiring little ones. I have gained new friends… Ms. Iris who draws my blood might as well join my family. JRA has also influenced my plans for the future. I have decided to become a Pediatric Rheumatologist and find less toxic and more effective therapies for children with Juvenile Arthritis. I am working hard now in school in order to accomplish that goal; the 300,000 children dealing with Juvenile Arthritis deserve it. Until then… We can’t fight this battle alone. We need help… How can you help? Donations to the Arthritis Foundation can bring us one step closer to the cure. We need more awareness for this disease. Before reading this, did you know that kids get arthritis too? Thank you for taking your time to read my story.

Let's Move Together Arthritis Walk, Charlotte NC

2011-05-16T17:21:00.000-07:00

This past Saturday, May 14th, we walked to show our support of not only our Jenna Bean, but the 50 million Americans, which includes 300,000 children that suffer everyday from this horrible, painful, debilitating, mystifying disease. I was worried that we would not hit our fundraising goal of $1000. It was right down to the wire but we surpassed it! We had a team member goal of 15, had 11, walked with 5. I decided that day that if need be, I will walk alone. If need be, I will be the only one donating. If I can only raise $10 and walk alone I would still do it. Wouldn't you??

Jenna's Story

2011-05-16T17:15:00.000-07:00

It all started one morning in July of 2008. It was a typical morning for us. Larry was getting ready to head out to work for the day and I was getting the 3 kids and myself ready to head to the beach for the day. As I was busy making lunches, gathering towels, toys and sunscreen, the kids are all running around the house in their bathing suits, Larry asked me, “Why are Jenna’s knees square?”. I thought he was crazy; it was the oddest question I had ever heard. I told him about that much and went on about what I was doing.

While at the beach, my Mother asked me the same question, “Why are Jenna’s knees square?”. It was as though time stood still and I felt like I was being sucked into a vacuum. I figured there had to be something to it if both of them were seeing something. Some Mother I am huh? I called my little 4 year old Jenna over to me to check out these square knees. Hmm…maybe they are square. I then called over my 10 year old Kailey and my 7 year old Dillon. I wanted to line them all up and compare knees. Son..of…a…gun. Something was clearly wrong, yet nothing was bothering her. We spent the rest of the day at the beach as we normally did since Jenna seemed fine; I figured there was no emergency. The next morning I was able to get her in to see our pediatrician to check out these square knees. She agreed that they indeed were too big and actually did look squarish. She said something isn’t right but that she didn’t want to jump to conclusions. She got x-rays of both knees that showed excess fluid and swelling. Uh…okay. She told us that the only thing that she is aware of that would cause that is Juvenile Arthritis but she was no expert on it and wanted us to see a rheumatologist ASAP. Uh…ooookay.

The dates get a bit sketchy and fuzzy from here but I believe it was within a couple of weeks to a month at best we were in to see a rheumatologist. He took some x-rays himself, ran some labs and did a physical examination. Keep in mind now, Jenna was ONLY four years old. The lab results confirmed the diagnosis of Juvenile Arthritis; his examination showed that she not only was affected in both knees but also a few fingers, toes, one elbow and one ankle. She was put on Naproxen in an attempt to control the inflammation in her joints. This turned out to not only be a failure but an epic failure. The Naproxen did nothing for her swollen, by now painful joints, but she also had a severe reaction to it. She developed sore, oozing blisters all over her extremities. Unfortunately it took a few weeks to figure out that it was the Naproxen causing this. Once taken off the Naproxen the sores went away immediately. The Naproxen was then replaced with Motrin, she was scheduled to have the excess fluid drained from both knees, steroids injected into both knees and Methotrexate (chemotherapy med) was added to the mix. All in an attempt to gain some control over this disease. Remember, she is four years old. While the procedure itself was a nightmare, the draining and injecting worked WONDERS in conjuncture with the MTX and Motrin. She showed immediate improvement in all of her joints. And for the most part the swelling in her knees has stayed down. She did continue to have pain and some stiffness and needed 2 tsp of Motrin 4 times daily.

The labs that the rheumatologist ran in the beginning showed that Jenna was ANA+. He explained to us that this put her at a higher risk for developing complications with her eyes. What in the world?? Arthritis affects the eyes? Oh we had no idea the ride that we were in for. At her first eye check we were told she was all clear. Three to four weeks later we went back and she was in a major Uveitis flare up. This is the beast that proved to be our biggest battle. Jenna was put on eye drops to control the inflammation; I believe these were four times daily. At one point she was on three different eye drops but I honestly can’t remember all of them, how often she had them and what they were all for. I do however know that NONE of them are safe to use for an extended period of time. So, we had to find a systemic med that would not only treat the JIA, but also the Uveitis. Clearly Methotrexate was not going to work alone. At this point we added Enbrel to her med list. Enbrel is a once weekly shot, Motrin orally 4x daily and at that time she was taking her weekly MTX orally too. It felt like we were always in a doctor’s office or on the road. We had to take her to her rheumatologist , about an hour away every 6-8 weeks and she needed to see the Uveitis specialist, about 3+ hours away every 4 weeks! It was getting to be too much and nothing was getting better, rather it was getting worse. Over the winter months Jenna would wake up crying and refusing to get out of bed because simply getting up hurt her too much. We lived in Maine at this time and the winters can be brutal. If we had to go outside for anything I would have to carry her because her legs would freeze up. We felt as though we were banging our heads against a wall and for nothing!

We asked her rheumatologist if her felt that maybe a warmer climate would help her. He said that not only would it likely help her, but if we were interested in NC, he could get her into the Duke Children’s Hospital Pediatric Rheumatology clinic. The bonus is that the also have a pediatric eye clinic to see her and treat her Uveitis. One stop shopping. We researched them and saw that this is what we had to do for Jenna. We packed up and headed south, leaving behind all of our family and friends in June of 2009.

At her very first appointment the pediatric rheumatologist at Duke told me that her meds were ALL wrong and that she was so happy that we were here. Administering the liquid injectable MTX orally is not advised and Jenna is a clear reason of why, it doesn’t work. The Enbrel is not proven effective when treating Uveitis. Yeah, we figured as much since she had been on it about 8-10 months at this point with no sign of improvement. She also was not taking any folate or prevacid to counteract any side effects that she may have from the MTX.

Initially we tried just changing the MTX to injectable form to see if that would make any difference before we tried changing her from Enbrel to anything else. I wanted to take things slow. At her next visit however, there was no change in her eyes. Her joints were okay for the most part by this time with only minor swelling and pain. Her MTX was increased from 0.4 ml to 0.8 ml and we made the switch from Enbrel to Humira. Her body did not tolerate the increase in the MTX. She had severe abdominal pain and her hair was falling out in clumps. I called the ped rheum and she backed her down to 0.6 ml, increased her folate and added prevacid to Jenna’s daily meds. So by this time we are in about December of 2009, Jenna is not quite 6 years old yet, and she is taking 1 weekly injection, 1 bi-weekly (very painful!!) injection, and 2 sometimes 3 daily meds.

The good news is that the Humira worked!!! It cleared her eyes of the Uveitis, she was able to get off of those God awful drops that she had been on since fall of ’08 and she was showing more signs of improvement in her joints. She did have a rough time with infections in her ears, lungs, sinuses, etc. over the course of that winter. I think her body was working too hard at keeping up with the meds.

Her summer of 2010 was fantastic!!! She looked and felt better than she had in 2 years. It was so great to see and it almost felt as though we had a caught a break. Then fall of 2010 hit. I don’t know if it was just the shift in climate, but she started going downhill again. More pain, more fatigue, more frustration from this never ending ride.

Jenna’s meds remain the same at this time. Until she can be symptom free for one year, we cannot try taking her off of them. We are heading into summer again so I have high hopes of another great one! Jenna sees a pediatric PT once a week to help her regain some muscle mass that she has lost due to the JIA. She was fitted today with custom orthotics to correct some issues with her feet and ankles. I believe that after three very long years, we may finally be on the right path. I pray to God every day that we are.

May is for....

2011-05-04T08:32:00.000-07:00

...Arthritis Awareness Month. Did you know that? Unless you are someone you know is impacted by this dreadful disease, I bet you didn't. Did you also know that there are more than 100 forms of arthritis? Bet you didn't. Did you know that Juvenile Arthritis is an AUTOIMMUNE DISEASE? Bet you didn't. Did you know that our kids (and lots of adults) have to take low dose chemotherapy as part of their treatment? Bet you didn't. Did you know that many of our kids hate day to day life because this disease makes them so different? Bet you didn't. For instance, a field trip means having to wear long sleeves, long pants, a wide brimmed hat AND sunscreen while your kid wears shorts a tee shirt and not a care in the world. Our kids have to miss school because your kid didn't get his vaccinations, so now there is an out break of chicken pox at school. Thanks. Our kids caught your kids cold because you felt he wasn't "sick enough" to keep him home from school. Now our kid has pneumonia. Did you know that the very drugs that treat our children, also make them sick? Bet you didn't. Or how about this, did you know that every Friday night I have to hold my baby girls hand while Daddy gives her her injections and she screams, "Please don't do this! WHY are you doing this to me?!" I bet....you didn't.
That video up there is of a sweet, BRAVE little girl named Jordan. Her family calls her Peanut because she is so small. So small, yet still SO brave! Oh yeah, did you know that this disease can stunt a child's growth? Bet you didn't.

Idiopathic

2011-04-25T16:15:00.000-07:00

At some point, I don't know when, someone, don't know who, decided that we should call this crap disease Juvenile Idiopathic Arthritis rather than Juvenile Rheumatoid Arthritis. I have heard and read that the reason behind this is to better separate the adult disease from the childhood disease. Wouldn't the term JUVENILE in the name do that?? I suppose that I understand that if a child doesn't actually test positive for the rheumatoid factor than in fact it shouldn't be termed JRA. But does anyone really know what idiopathic means? Doesn't it make an already confusing disease a little MORE confusing?? About a week ago I was watching something on TV and the doctor used the word idiopathic when referring to the disease he was talking about. He went on to explain that idiopathic simply indicates that there is "no known cause or origin". HUH? THAT'S what it means?! Boy did I feel ignorant. I accepted a term for the chronic illness that my child battles without even knowing what it means?! *smacksforehead* I have been thinking on this, stewing on it since that day and decided to post this. I mean, I can't be the ONLY one....can I??

–adjective Pathology .

of unknown cause, as a disease.

2011-04-18T08:41:00.000-07:00

I continue to be amazed by the great awareness videos being made. Here is another one that was a collaborative effort of 3 Moms, the Mothers of the 3 girls in the video. THANK YOU Stacey, Kristie and Danielle! For more information please visit The International Autoimmune Arthritis Movement website.

Ears. PT. 504

2011-04-15T14:02:00.000-07:00

One thing at a time, let's start with her ears. Wednesday of this week we saw the ENT to see if we could get to the bottom of her chronic ear infections. Basically one really long infection since February. She just finished her 4th round of antibiotics today. He confirmed what we already knew, that she has a build up of fluid in her ears. He suspected, as we did too, that her adenoids were enlarged making it impossible for anything to drain. She has had this nasty junky cough and snotty nose since last Fall, I guess that's all part of it. So he did an xray to check it out and sure enough they are enlarged. He also said that she has "significant hearing loss" which was surprising since we thought her hearing had come back! I was so shocked that I forgot to ask if this is permanent? Anyway, the game plan is to TRY to shrink the adenoids with nasal spray over the next 30 days and then we can avoid surgery. I'm all for it but I have my doubts. I suspect that in a matter of days, after finishing the antibiotic, the infection will return, as it has since February. Last week we were told by her Rheumatologist to hold her MTX. I am waiting on a call back as to whether or not we are to hold tonights MTX and Humira or give it. Also, if she does need to adenoidectomy and tubes inserted into her ears, do we stop then too? For how long? Over the last couple of days we have noticed a HUGE change in Jenna. Her energy level and attitude are incredible. I guess the MTX takes a larger toll on her than we realized! It's nice to see this side of her again. But, as my husband pointed out, this also means that she may be in for some serious pain. Time will tell. I want to emphasize her that it is the meds that control and treat her JIA and Uveitis that have made it impossible for her to fight off these infections. She is at risk and will suffer with any decision we make, whatever the outcome, she suffers in one way or another.

Now, onto PT. We have met with the PT only twice now and have been left to work on things ourselves at home otherwise. Each time we have met with him I feel as though he isn't listening? Or doesn't "get it"? Not sure, but something felt off. Jenna has been struggling with just basic leg lifts, particularly on her left side. This does not mean that she complains or tries to avoid doing them. On the contrary, she loves to. I pointed out to him that she was struggling, he suggested that maybe she isn't trying. Way to get my hackles up Dude. He tried giving her some different options for exercises and stretches, but she wasn't able to coordinate her body properly. It was getting frustrating. So, after talking to my amazing group of Moms I was referred to and contacted a local PEDIATRIC PT...DUH! Will we ever learn?? I am sure this other guy is great with his adult patients, just not my kid. I called this woman that specializes in peds and I loved speaking with her! I know this will be great. She addressed all of my concerns and I agreed 100% with everything she told me. We meet with her next Saturday!! Can't wait!

Last but certainly not least, the dreaded 504. Have you been following along? we have been trying to get this done since last year. Yep, last year. Just search 504 up at the top of the page, it will pull it all up. ;o) To sum it up for you, her school didn't feel she needed one nor was she entitled to one. I let it go for a bit and was stewing on it. Then after speaking with the folks at the Arthritis Foundation, I was urged to push on for it and they would be right there with me. I love them!! So I emailed Jenna's teacher to give her the heads up of what we were prepared to do if they wouldn't comply, suddenly, they were eager and willing. We went from them not even wanting a letter from an AF rep or any pamphlets or handouts on her diseases and meds to wanting to MEET with a rep in the hopes of learning more. HUH?! Oh well, whatever, let's go! So, Larry and I, along with an AF rep met with the Principal, teacher and school nurse. Someone....was noticeably absent! The guidance counselor. I don't know if that was intentional with the scheduling but it certainly worked in our favor. The entire mood of this meeting was completely different! I still don't think that they agree with a 504 for a 1st grader. They seem to think her medical action plan is sufficient, but we felt much more support and understanding from them and for that I am thankful. If anything new comes up between now and the end of the year we will meet again, otherwise we will meet again right before school starts up again in August.

Untitled.

2011-04-14T18:04:00.001-07:00

Dear Blog,

I have lots to tell you. I am sorry if you are feeling neglected and out of the loop. I promise to sit and spend some time with you tomorrow. I promise to share all of the very latest details. Really...I promise...well, to try and spend some time with you tomorrow.

Sincerely,
Me

And in other news...

2011-04-08T09:31:00.000-07:00

Jenna is still battling ear infections and is on her 4th course of antibiotics within an 8 week time frame. Yeah, that's just awesome. She no sooner comes off of them, she's back on. This time she didn't even have a fever, just complained of pain in her ears and she was deaf, again. So I really didn't even think they were infected. I thought maybe there was just too much fluid. I called her rheums office at Duke to run it all by them and see what they would want for if she did go to the ped. They are so awesome with communication that even on a "bad, crazy day in the office" in their words, they STILL called me back within a matter of a couple hours. The rheum said that 1) whether her ears are infected or not, it's time to call in an ENT to take a look. :( 2) Skip her MTX this Friday for SURE and possibly hold MTX and Humira next Friday. We'll wait and see what the ENT says about what's going on when we see him Wednesday next week and then call Duke. The rheums said that given how long she has been on MTX (Sept.08) and Humira ( Dec.09) she SHOULD be okay skipping these doses. Not entirely reassuring but I know we have no choice. Her ped said that the ENT will LIKELY suggest tubes. Not a big deal, right? Lots of kids have them, lots of kids have had many. Well not MY kid! Sure, it could be worse. Sure, I'm thankful it's not. But that doesn't always make the current struggle any easier. I read something this morning, "Without struggle, there is no progress.". I liked it, pretty profound.

When Jenna was last seen at Duke, just last month. Seems much longer ago! Anyway, we were given a script for PT for her. FINALLY. I really didn't know what to expect, I just wanted her to get some relief from the constant pain and fatigue. I found a place here in town that looked great and they said they could help her. At her 1st appointment we learned some new things, ALWAYS learning with this disease. Her hamstrings are SUPER tight! He thinks that this is what is causing her pain behind the knee. Also, she has significant weakness in her hips and upper legs. I had no clue. We thought she was strong. Her hamstrings are so tight that she struggled just getting into some of the positions to stretch. Her hip muscles so weak that she needs to contort her body to lift her leg. WOW. We went home with some "homework" and had our 3 week follow up this week. I'm not overly impressed. For one thing, Jenna is 7, not 77. So if you for the most part treat 77 yr olds, are you REALLY going to know how to handle a 7 yr old?? I don't know, things didn't feel right at this appointment. Jenna had really struggled over the last 3 weeks with these exercises and she didn't make any progress. When I told him this, he said that with kids it's tough to tell because maybe they just aren't trying. DUDE, wrong thing to say. I tried telling him how much the leg lifts hurt her hips, especially the left hip which we noticed is weaker. He kept mentioning the exercises hurting her behind her knee. HELLO?? Is this thing on? Her HIP, they hurt her HIP. Ugh, I don't know. I just had that "feeling", ya know? So I put it all out there to my AWESOME group of JA Moms on Facebook!! LOVE those ladies! They told me that she for sure needs a ped specific PT, I really should have known this. Also, they told me that I did the right thing by listening to my gut. It hasn't failed me yet. So, one of the Moms I just met and she's local AND she gave me the name and number of the ped PT that her daughter used AND she is right here in town! Trouble is she is out from knee surgery but all good things come to those who wait. :)

Okay, ONE last tidbit. Remember WAY back last Fall when I posted about requesting a 504 plan for Jenna at school? Remember the troubles we faced with that? Would you believe....we are STILL struggling to get this? Yep, still struggling. I had decided to let it ride and try again next year. After speaking with the folks at our local AF as well as some FIERCE JA Moms I was encouraged to pursue it. Things are moving along. I hate that I needed to make threats to get things moving, but they are none the less moving. Without the Arthritis Foundation....NONE of this would be possible. I told them in no uncertain terms that I can't do this without them! And you know what? They've got our backs. How...cool...is....THAT?