I need to lower my expectations...

Yesterday was Jenna's three month routine follow ups with the ophthalmologist and rheumatologist at Duke Children's Hospital in Durham NC. Almost four years in, and I still do not have a handle on this. With every appointment, I go in thinking that I know what's coming. Yesterday, I went in thinking that THIS is it! THIS is the appointment that changes our lives as we have come to know them! THIS is the appointment that we FINALLY get to start reducing her med doses. Ummmm, nope. 

I managed to snap some pics with my phone yesterday too (she never let's me!!) So I am going to share those while I tell of our day.

 This first pic is Jenna on the ride to Duke. It takes us about 2 hours and fifteen minutes. That used to be a torturous ride, but she has gotten used to it. This trip I let her bring the laptop to play on. :)

 Up first yesterday was ophthalmology. THIS is the appointment that always makes me the most nervous. Uveitis is often a silent disease. So it can be there, flaring, causing damage and we would never know. (I tried to get her to unfold her arms. NO doing!)

 First they check her vision. She has been complaining of difficulty seeing at distances. BOY I guess! She really had trouble with the charts.

 Then a fellow comes in to check her with the slit lamp to look for signs of the Uveitis. Jenna is such an old pro at this. They don't even need to tell her what to do anymore!

 These are the "really cool" sunglasses that they gave her. Glad you like them Toots. She needed to have her pupils dilated and lights can be painful afterwards. SO, Dr. Wallace came in, checked her over with the slit lamp and deemed her cell and flare free! WHOOT and HOLLA! She needs glasses but hey I'll take it!! She is really excited about getting glasses. She has no clue what a pain they are. Dr. W said he is fine to start reducing meds whenever the rheums are and he will see us in three months. BUH BYE!

 Off to Pediatric Rheumatology. She was very scared to stand this close to the railing for a pic, but she did it for me anyway. Thank you Bean. :) We got to see our favorite rheum, Dr. V!! YAY! We hardly ever get her. Okay, so here is where the unexpected comes in. The GREAT news is that her joints all look awesome! No signs of any active disease. No swelling, stiffness or heat anywhere. SO, my thought was that since she is doing so well AND since the Methotrexate has been making her so sick, let's get her off this crap. Ummmm, nope. WHAT?? WHY?! Three months ago at her appointment, she was having severe morning pain and stiffness. Even though she looked fine at the appointment, morning were still torture for her. Peg legged, scooting around on her butt, miserable. She was put on once daily Mobic. That has worked like magic. No more pain, no more stiffness, she has seemed to be doing better than she has in a very long time. Dr. V is concerned that if we reduce her meds now, after only three months on the Mobic, that it will bring all that pain and stiffness back. She feels that Jenna's body needs more time, that in six months if she is still doing this well we can start stretching the space between Humira injections. Okay, I can take that. Not what I was hoping for, not what I was expecting, but we can take it. We are going to TRY to change her DMARD from Methotrexate to Avara. The MTX is just making her so sick. Partially because, well, it's toxic chemotherapy. Partially, we think, because she is anticipating being sick and the anxiety of it coming is only exacerbating the effect. Here is the problem, Avara is a pill that cannot be crushed or cut up in anyway. It must be swallowed whole. Jenna can't even swallow one mini M&M or a tic tac. :( My hope is that the simple fact that if she can swallow this tiny little pill each day that she gets to skip one shot a week and not get sick is enough motivation for her to get that danged thing down her throat hole! I guess we will find out tomorrow morning.
Jenna shared a few things at yesterday's appointment. Jenna sharing thoughts and feelings is pretty rare! When Dr. V asked about Jenna's activity level I was about to tell Dr. V that it's been great! But out of the corner of my eye I saw Jenna shaking her head "No". I asked her, "You DON'T think you have been active?". Again she shook her head "No". I said, "Really? You seem to Daddy and I to be more active." Again, the shake "No". It hit me then. I said, "Do you mean you aren't as active as your friends?" This time I got a "yes" shake. Ooooooooh, well, :(. She also, for some reason, asked me about the Humira Pen yesterday. I had no clue that Jenna even knew about the pens! I said, "Why do you want to know about them?" She said, "Well, when can I get them instead of the needles? That way I can just, *insert sound effect*, get it done." After explaining how the Pen works, getting the med in super quick, which makes it hurt worse, she was all set with the pen. :p I told her that if she changes her mind to let me know and we can get her the pen. After that discussion, she asked me if Jordan uses the Pen for her injections. Jenna looks up to Jordan SO very much!!! One day, they WILL meet! I told her. "No, Jordan doesn't get injections anymore. She has to get infusions for her meds. " Jenna then asked me to explain infusions.I told her that Jordan has to go to the hospital to be hooked up to an IV for hours to get her meds through the IV. Jenna's eyes bugged out and she said, "HOURS?!" I said, "Yes, it takes hours. How many depends on the med. But still, hours." To my surprise, Jenna said, "She's lucky." I'm sorry, SAY WHA?! I asked her, "You would RATHER have infusions??" She replied with a very somber, "Yes." Well that about knocked me off my chair.

And then there was this. Jenna always draws on the table paper at any appointment. But this was new. She has never been so expressive about her arthritis.

It's a Fundraiser!!!

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!!

"You have BEAUTIFUL ankle bones!"

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.

World Arthritis Day

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.

The Eyes

 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)

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

...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.

May is for....

...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.

Ears. PT. 504

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.

This was a true labor of love....

Where do I start???

It's all good news, I just don't know where to start! I feel so behind. Okay so we'll start with lab results. This is something that I had been very worried about, given the fact that she has not had proper labs done in over a year. They....looked.....GREAT! Sedimentation rate is WELL within normal range, WOW. Platelet count is only SLIGHTLY elevated, not a huge concern. The only other thing out of whack was her Alkaline Phosphatase. The rheum nurse explained that in kids it can be high simply based on the fact that they are generating a lot of bone. I'll take it. So, her body seems to be tolerating all the meds AND there apparently is no hidden inflammation. SO, why does she still feel so miserable??
Well, on Thursday she had her first PT session. She seemed to be feeling pretty good that day so I was sure he would think we were nuts for bringing her. Plus she was in one of her, "NO nothing hurts now or ever" moods. *SIGH* But as he was talking to her and checking her out, he was able to somehow by poking around on the back of her knees, reproduce the pain she feels and she admitted that YES, that's it. She then fessed up to her feet bothering her by days end by but that was ALL she was willing to own up to. One of the things he had her try was to stand on one foot and bend down to touch the floor and then stand back up. Most kids SHOULD be able to do this with only slight wobbling. She fell over. Partly goofing off, partly that her muscles are weak. He also pointed out that she has flat feet, virtually NO arch. We had been buying her Keds because she said they were soft and comfortable on her feet. She has always been so picky with shoes. He said they were all wrong for her feet and therefore contributing to her pain. AWESOME. He referred us to a specialty shoe store to have them properly fit her for a well constructed sneaker that would provide good stability. They guy at the store was awesome and we got her some GREAT sneakers! Never heard of the brand, "Brooks", but we will for sure be back for more when she outgrows these! Okay so back to PT. He also discovered that her hamstrings are super tight! She can't straighten her legs except when standing. With all of her hypermobility, her hamstrings are tight?? She couldn't even get into a proper position to stretch them. This will take some work. So we came home with a sheet of exercises to strengthen her hips, thighs and knees as well as stretches to loosen up her hamstrings AND instructions to get her shoes (which we did Saturday). He said he wanted to wait three weeks before seeing her again to see how much progress she could make with better shoes and doing her homework. The exercises are tough on her and the stretches painful but she HAS to do them and we HAVE to make her.
Then on Friday morning I went down to Charlotte to the Arthritis Foundation offices to meet with the person in charge of the Let's Move Together Walk. Our team is not doing so well with getting new members OR most especially with raising any money. This has had me really bugged and I thought for sure I was missing something. I had a GREAT time meeting with Stefani! I left there with some fresh ideas and some fresh energy! I am definitely feeling more positive. It's just going to take some creative thinking. While discussing different possibilities, she mentioned that they would be more than willing to go into Jenna's school to do a presentation and get them involved. I told her GOOD LUCK. Not only have I tried repeatedly and unsuccessfully to get them involved, we can't even get a 504 plan out of them. The more we talked about that, the more outraged she became. Yep. She said they're on it now. Eager to see how this plays out. She suggested 1) Requesting a transfer OUT of that school 2) Contacting a lawyer since what the school is doing is highly illegal. I told her that I would wait and see what happens with the AF contacting them. If they still won't budge, then we will take action. I just left there feeling so good, knowing that we aren't alone. I also left with some great posters, "vintage" AF walk t-shirts, shoe laces and water bottles . So excited about the possibilities! OH, I also left with packs of paper "bones" to sell to raise money! I brought them to our pharmacy and they said they would be more than happy to sell them for us! You know, "Would you like to but a bone for $1 to help support the Arthritis Foundation?" Shyeah! We have some more stuff in the works too. Simply asking people to donate doesn't seem to be working so we are going on to plan B.

Breathing a Sigh of Relief...

....so far anyway. I should have her lab results tomorrow, or the beginning of next week. Once I have those and they look okay, THEN I can really breathe I sigh of relief. Overall, it was a really good visit.

The ride there was better than it used to be thanks to our "new to us" vehicle. The highways here are still a nightmare, Larry got to witness this for the first time and he was amazed. But, it was definitely a more comfortable, smoother ride. Jenna was for the most part comfortable the whole way. A few times when I looked back she was grimacing and trying to find a comfy position, but overall she did okay. Two hours of sitting still isn't easy on anyone really.

We got there a little ahead of our appointment and were taken in almost immediately. We saw a new doctor, I can't for the life of me pronounce his name, but he was very nice, very thorough and we all liked him, we shall  call him Dr. D. He took the time to answer all of our questions and answered them in ways that we were able to understand. Gotta like that! Jenna was loose as a goose, no pain, no stiffness....NO SWELLING, NO signs of ANY active arthritis!!! WOOOOOHOOOOOO baby!!!!!!!!!! SO pleased to hear that. However, he said that given what we told him about her Fall and Winter, she likely had active arthritis then. SO, that means that yesterday was day zero on the road to being able to wean her off of meds. BOO! That is a big bummer as I thought that we started that in December of 2009 but, she is doing well now so I need to focus on that. We talked a bit about her hyper mobility. He seemed pretty amazed at how far he could overextend her joints and it not hurt her. He said that the pain that we are describing her as having (pain behind knees while seated, pain from extended walking, etc) is from her hyper mobility, not from her JIA. The good news of that is that he wants to put her in physical therapy. FUNNY, I asked the doctor that we wasted a year on about that and he said no. Hmmm....so anyway, the goal is to strengthen her muscles and tighten her ligaments and therefore, eliminate her pain :) I called today to set that up, she starts next Thursday, they said three times a week to start. WOW. Labs went great. She held still, he was in and out in the blink of an eye! I think food was her motivator but by the time we were done with the lab we were already late for her eye appointment!

On to Duke Eye Center.....we only got slightly lost in the hallways :p We arrived for her appointment thirty minutes late but they took us back fairly quickly. The resident that saw her first was great with her. He is in the right field for sure. I wish ALL peds doctors were like that. He said everything looked great to him but he knows that Dr. W likes to get a better look with another machine. It had been well over a year since they last dilated her to look behind the retina so we did that too. UGH. Poor kid apparently still remembers all of her nightmarish experiences with the doctor in Maine because she fought us like a wild animal just trying to get the dilation drops in :"( AND, they didn't take the first time, so that was a total of 40 minutes waiting for her pupils to dilate. By this point it was 2 or 3 in the afternoon, we hadn't eaten anything, and Larry had been up for 24 hours. Awesome. But anyway, Dr. W took a look with his "better equipment" saw NOTHING, looked behind the retina, saw NOTHING!!!! WOOOOOHOOOO! Eyes are still clear and holding strong! I am so very grateful for that especially given the struggles that I know so many other parents are going through right now trying to find the med combo that will work. We have been so fortunate. Dr. W said that as far as he is concerned she can start weaning anytime and he will send that recommendation over to Dr. D. But, he also said with a smile that he knows they won't go for that :) LOL!

So, that's it! We go back in three months unless something new comes up. She starts her PT next Thursday. Lab results should be ready tomorrow! Thank you to everyone that has been praying for my sweet Bean. It means more to me than I could ever express.

Oops sorry, just remembered a couple more things. We spoke with Dr. D about our troubles getting a 504 in place for Jenna. Of course, the social worker wasn't in yesterday. She will be back on Friday and he will give her the info and have her call us so that she can take care of it. This will definitely be needed now with her having PT as the latest they schedule is 5 pm and those are difficult to come by. So I may need to pull her early or bring her late. Also, I forgot to ask about the CARRA registry :( Very disappointed in myself for that. Next time though, I promise. And lastly, her official diagnosis now is extended oligoarticular juvenile idiopathic arthritis. Dang that's a mouthful!

To Each Their Own

Since her diagnosis nearly three years ago, we have heard numerous alternative therapies to treat Jenna's diseases. I appreciate that people think they are being helpful, I really do. But in all sincerity, do they really think that they know more than the doctors? In the beginning I would be intrigued when someone would offer something to try and I would research it. But, I never really felt safe or secure in the ideas. If it were me? Heck yeah I would try alternative therapies! But for my child? Is it really worth the risk if that therapy fails? Especially when you consider that her arthritis isn't only in her joints, it's in her eyes! Would you really, I mean really risk your child's eye sight just to try something that may or may not work? And before you say it, YES, I knooooow that the meds that we inject her with are dangerous. I know that, believe me I know and I hate it. But for us, when we look at everything and weigh it all out, the risks balanced with the proven success of these meds wins out hands down over anything else. Is it maybe just that people don't understand that this is an autoimmune disorder? Maybe they don't even know what an autoimmune disorder is. I know that it can be confusing, heck, nearly three years in and I'm still learning! We can't simply treat the inflammation and the pain. We need to treat the disease. Your immune system, that thing within your body, designed to protect you against illness and infection actually attacks your body therefore making you sick when you have an autoimmune disorder such as juvenile arthritis. One specific alternative therapy that I have heard of a few times but never paid attention to is antibiotic protocol. It's come up a couple of times in my arthritis family circle (love them!). I never looked into it because it simply didn't sound sensible to me. For one thing, you use antibiotics to kill a bacteria making you sick, there IS no bacteria making these kids sick. For another, how many times have we heard that antibiotics are being over used in kids and therefore a great many of them no longer work?! Most pediatricians refrain from prescribing antibiotics anymore unless for serious infection because of this. So why would I treat my child's autoimmune disorder with antibiotics? I doesn't make a bit of sense to me. Well, there is a group that has made frequent visits to my blog. I keep seeing them pop up but never thought to look into who they are or what they are about. The name of their site didn't ring any bells, but it possibly should have. Antibiotic protocol is right in the name. Finally, the other day it registered with me so I went to their site and looked around. They are of the belief that antibiotic protocol is the ONLY route to take and basically we are all fools for thinking anything different. As the title of this post says, "To Each Their Own". Treat your child's disease however you like, it's not my place to judge you, shame you or mock you. Shouldn't we get that same courtesy? And why hide out in the shadows? If you are going to visit our blogs, our discussion boards, etc., Why not speak up? You see what they are doing, and there is only a handful of them, they visit our blogs and boards, not to help us, not to educate us, but to gather information about us and our kids to share amongst themselves. WE make our lives, our stories, our information public because we want to reach out to people, have people reach out to us and all be there together for on another on this really crappy road. Why are they hiding? Not only is my blog public but I also don't moderate comments. I have been told that I am crazy for doing this. I have nothing to hide, I'm only here to help. On their site, not only do they keep certain areas under lock and key, it states clearly, "Don't mess with us. No exceptions. The WTF Management Team.". Well now, isn't that just a warm and fuzzy welcome? So basically if you don't agree with what they say, don't bother registering, becoming a member and voicing your opinion. I can't even find anything on their site or on another that they recommend that even says how AP works. What do you take? How often? For how long? They talk a lot but don't actually say anything. I plan on asking Jenna's doctors at Duke Children's this week about AP because I like to be educated and well informed. I'm actually very eager to hear what they have to say about it. My blog will continue to be public and comments will continue to not be moderated. I have a lot of people finding this blog by searching key words. If I can help even one person feel as though they are not alone then it's worth it. And if you have something to say? Say it. I won't delete your comment. Just be prepared for the comments that follow. I've been attacked once already on here, we Moms stand STRONG and UNITED.

A Bit Of He Said She Said

A good friend of mine has a great saying, it goes something like this, " I believe that there are two sides to every story, and that the truth lies somewhere in the middle." I love that saying and I believe that in most instances, it is applicable. However, there are some things that you just can't argue the facts on. You can't fight statistics that are backed by extensive scientific research. Those of you living with a chronic illness or parents to a child with a chronic illness, how many times have you been told that there are more natural, better ways to treat the disease? All of you right? Wouldn't it be great if that would work? I mean really, who wouldn't prefer to treat a disease with natural, from the earth products?? Sadly, those of us who are in this, know that can't be done, it won't work.

A couple of weeks ago an article started circulating on Facebook and Twitter. Unfortunately I can't find the link to the newspaper article, just the blog post. Doesn't matter, still the same rubbish. This piece of rubbish was written by a doctor of Oriental medicine practicing Korean Constitutional Medicine in California. Now, I admittedly know zilch about Oriental medicine. I had never even heard of it before reading this blog post/article. I do however know autoimmune disease and more specifically Juvenile Arthritis. Therefore I can easily say with the utmost confidence that what is written is total rubbish. Here are a few key points just to give you an idea.

"JRA is usually temporary and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."

FALSE! It WILL last a lifetime until a CURE is found! The strengthening of the immune system would only make it worse since the treatment of JA is suppressing the malfunctioning immune system!

"It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences."

Yes clearly an unplanned, unwanted pregnancy caused some kids autoimmune disease, of course. And please, parents, be sure to only conceive your child on optimum weather days okay?? SHEESH!

"The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection. "

Yes obviously daily massage can help ease pain, better nutrition is ALWAYS key for ANY child, acupuncture sure, herbs, whatever, ADDED LOVE AND AFFECTION?! DUDE, if love and affection could cure my child, SHE NEVER WOULD HAVE BEEN STRICKEN WITH THIS!

Then yesterday a friend posted another article. This one, this one makes sense. There are no facts to be disputed, no fluff, just a simple four paragraph article written by a woman living with autoimmune disease since she was a young girl. She writes wondering what it's been like for her parents. Now she is a married woman and has children of her own. She says, "I would sail over the moon to do almost anything for my kids.". She also says, "I often think about the roles of my parents in my battle with chronic pain and illness. I had never considered their feelings before, or what they must feel about how I am doing, because quite honestly, my battle has been very overwhelming because of the level of pain I deal with every day. " AS the parent of a chronically ill child, I cannot begin to tell you how much her words mean to me. She goes on to say, " My Mom is my role model for motherhood." and "My parents are my heroes." I can only hope that Larry and I are doing even close to this well for our Jenna "Bean". I tell you this kills me, it KILLS me everyday that I can't take this from her. I feel it's my own personal failure. WOW....where did that come from??? Well there it is. I guess it's been inside me somewhere, my heart or my head. I feel as though I have failed her miserably, in the biggest way possible. I'm not protecting my child from the monsters in the closet so to speak. Her JRA is her monster in the closet and I can't make it go away with a hug and a kiss, with story book or a song sung at bedtime, with a prayer or a favored stuffy. Mommy can't fix this. I would give my HEART to her if it would fix her and make her well.

I had no idea that writing this post would bring any of this out of me. I thought I was just going to be sharing some recent articles, facts and opinions. I can't tell yet if this WAS therapy or if I NEED therapy. But, now I need to go find a tissue...

We were SO close!!

We almost made it through the entire Winter without any major, fever producing bug of any kind. So close, but not quite. She certainly hasn't had a great Winter. She has had lots of fatigue and pain issues but she hadn't gotten sick. Considering all that has gone through her school and the fact that NC is having yet another crummy Winter, I felt really lucky. Last Saturday she was very clingy, didn't want me leaving her side for any reason, more emotional than usual and just generally out of sorts. I just figured she was more tired than usual. Then Sunday morning she awoke with ...um....we'll just say messy pants. She's 7 now, so....that's certainly not typical. She said her belly hurt pretty bad but that she felt okay otherwise and she really didn't want to miss church. *sigh* She loves church, she cried when I told her I didn't think she should go. She assured me she would be fine. So she went and indeed she did seem okay. She was very quiet the rest of the day though and said her belly still hurt. Monday morning I decided to keep her home given the belly pain, "messy pants", and she had Humira and MTX injections Sunday afternoon. I figured a day of rest was in order. She seemed just fine all day and night so Tuesday morning we sent her off to school. Well, she came home digging in her ear and crying that it hurt really bad. Oh she broke my heart. This is the kid that has pain EVERY day in her hands, legs, feet and God only knows where else. She rarely even mentions that pain never mind cry over it. This was open mouthed sobbing, for HOURS, like, all night long hours. I was giving her Motrin, warm washcloths, nothing soothed her. By morning she had a temp of 103. Aw crud. So I called her peds office first thing. They typically have plenty of "sick kid" appointments. This time they had sick doctors. Aw crud. So they had no appointments and suggested we go to Urgent Care which actually was fine with me since they are literally right up the road. The place was surprisingly deserted when we got there so she was seen very quickly. She saw a nurse practitioner , which again, was fine by me, since I think many times they are way more thorough and have a better bedside manner. She took one look in Jenna's ear and said, "OH YEAH! It's infected alright! It's red, inflammed and full of blisters!". EWWWW! Full of blisters?? OUCH. Poor thing no wonder she was sobbing so hard and long! They had also just done a strep swab. She asked if I cared about the results as treatment would be the same. Nope, doesn't matter. She said it's likely positive since her throat didn't look so hot either. Same end result anyway, antibiotics. I finally remembered to suggest Omnicef on the 1st try. It is the only antibiotic that works for my kids yet it is always the 2nd string med. So, a 10 day course for her to kick this infection in the tail. After 2 doses, plus Motrin and Tylenol piggy backed her fever, which had climbed to 104, finally broke, left and stayed gone! Her belly is still bothering her so she is being very cautious about what she eats and how much of it. She is still even more tired than she normally is. She is resting on her own without being told and is able to laydown through an entire feature length film. That is saying an awful lot for Miss Jenna Bean! So that was Wednesday that we started the Omnicef, it's now Friday and day 3 of no school. She is enjoying being home but she misses school too. I think she will be happy to go back on Monday. If we can finish off Winter with this being her only major illness, I'll call that a success!!

On a small side note, only 26 more days until her appointments at Duke Children's!! I am so happy, excited, eager to get her back in there!

A Work In Progress

Yesterday morning we all finally met to have Jenna's 504 plan meeting. We have only been trying to do this since the beginning of November. It's now the end of January. ZOINKS. Mother Nature played a role in it, cancelling school and therefore the meeting on two occasions. Plus trying to coordinate with our schedule, her teacher, PE teacher, principal, guidance counselor and school nurse (who is shared w/ another school) is tricky at best.

I was so nervous going into this. I don't do well in these kinds of situations. It always feels very confrontational to me and I don't do well at all with confrontation. That, plus, our initial meeting didn't go real well. We left there feeling as though we would need to battle school officials to get this for her since she is ahead of her grade level academically. *I* knew that her medical conditions entitled her to a 504 plan to ensure her comfort and attendance at school were not an issue. Just not sure they knew.

We felt much more supported at this meeting. The majority of the room seemed to understand, have compassion and be on Jenna's side. Makes sense given this is a K-3 school right? Compassion? Understanding? For children?? Eh...at any rate, some great ideas were thought up and I feel confident that everything will work out.

I did mention that at her March appointment at Duke Children's I would be speaking with the social worker there and I will see if she can contact the school guidance counselor directly to iron some things out. I really think that may be the best route.

I emailed her teacher this morning to see if the tempurpedic cushion we had brought in for her chair had made it to the classroom. She said it did indeed and so far it seemed to be working great for her! She also said however that this had her classmates asking a lot of questions. She felt it was time to sit them down and discuss Jenna's illness with them but wanted to check with us first to make sure that was okay. I love that she is so in tune with all these kids. I told her it is absolutely okay. Jenna won't be comfortable with it but she needs to learn that her friends can be her biggest support system. This disease is a part of who she is. She needs to own it. I am very eager to hear how this all played out today.

It's A Family Affair

Life with chronic illness really is a family affair. Those of you living it likely already know this. Or, if you are new to chronic illness then maybe you aren't "there" yet. And, if you are the fortunate one not touched by chronic illness at all in your own family then pay attention :)

Two and a half years ago when Bean was diagnosed with JA and then with Uveitis we had no idea the impact it would have on our family. We just thought, "Okay, so she's got this thing, she'll take meds, it will go away and maybe come back, no big." HA! Can you say blind? First of all, it doesn't always go away. I have recently "met" some teenagers on Facebook with JA. They have had it since they were little tots and have never made it into remission. Dang. Second, yes, it is possible to end up in remission, but with so many kids, it just comes back a couple years later. So, guess what happens once that kid hits remission? The parents sit and wait. Wouldn't it be great to be able to just shout from the rooftops that "it's" gone and then go about leading a normal life? Not gonna happen. Heck, even while in "medicated remission" the parent sits and waits for the proverbial "other shoe" to drop. You see that is the other scenario that often times plays out. The child gets into a "medicated remission". That is when they are currently on meds but symptom free. Typically what happens is that after 2 years of being on meds without symptoms of the disease, the doctor will start weaning the meds with the goal of coming off completely and not having the symptoms return. But, sometimes while in that medicated remission the current med stops working. What?! Yes, it just stops working. Then you go back to the drawing board and start all over with yet another med. It's exhausting, frustrating and frightening to think about all this. Then there is when something new pops up and it gets you thinking, "What now??". A parent of a "normal, healthy" child likely doesn't panic over every headache, stomach ache, fever, rash, ache, pain, limp, ANYTHING out of the ordinary. I know I never did. And that worry isn't just limited to the child that has the diagnosis either. With a hereditary disease you have to worry about ALL of your children. I have 2 other children that could, potentially at any time develop JA and Uveitis just like their baby sister.

That's part of how it's a family affair. The parents never feeling like their minds can rest. Then there are the siblings. Another JA Mommy blogged last night about how chronic illness affects their family. One BIG way it has is this. "It broke my heart today when Matty got sad and upset because we can't sign him up for baseball this Spring. He looked at me and said "If you and Jordan weren't sick I could play." And the thing is, he's right." I can't tell you how many times we have had similar things happen in our own house. "Can we go to the park today?" No, your sister needs to rest. "Can we go to the mall today?" No I'm sorry, you're sister can't walk that much. The list goes on and on. It's ridiculous the things that we keep our other kids from doing because their sister is sick. Another Mom recently blogged about a photo that her oldest daughter had found of her baby sister from earlier in the year. "A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. " Then there is shot night. My oldest daughter can't even be in the same room when Bean gets her shots. I have asked her to please come sit and hold her sisters hand. Let her know that you are here. Tell her it will all be okay. She just can't do it. I don't know what part of that breaks my heart more. My son on the other hand can typically stay nearby for shots. Many times he has gone to his room and come back with his blankey and favorite stuffy from when he was a baby. He gives it to her to comfort her. Two weeks ago, her Humira shot was so not going well. It was a really ugly fight. I looked up just in time to see him run from the room. *sigh* I hate that. I hate what it does to my other two kids.

Of course, let's not forget the strain on the parents marriage. I used to hear about families facing tragedy that crumbled and fell apart and never understood it. Why would they not form a closer bond and help each other through. I still don't really know why but I have an inside look now. It is really hard on a marriage having to deal with a chronically ill child.

I just re read this and I'm thinking to myself, "I don't want this to BE our lives!" I don't want us to be defined by the disease. Yet how do we not? It is part of our EVERY day. I would love to pretend that it isn't there but I can't. Maybe there is a balance to be found.

This Isn't "JUST" Aches and Pains

This story is from the Let's Move Together Arthritis Walk Orlando Florida website. The arthritis that Bean and all these other kids suffer from is NOT your grandmas arthritis. It isn't from old age, or an injury. It's an autoimmune disorder. THAT is why it is so serious. It can attack ANY part of the body. I debated whether or not to even share this. It's scary and it's depressing. But ya know what? It's REALITY for us. A Tribute to the life of Jennifer Schott Jenny Schott as a child Jenny never wanted to be an outsider, and to her family and friends, she never was. But having been diagnosed with juvenile rheumatoid arthritis in 1980 when she was about 2 years old, she would soon find it impossible to live like everyone else. After a diagnosis during a hospitalization in Pittsburgh because of severe soreness and swelling in one knee, Jenny was prescribed increasing dosages of baby aspirin, up to 60 per day, to deal with the inflammation, soreness and pain. But, according to her father George Schott, the pain just got progressively worse as did Jenny's condition. "We would have to give her hot baths every morning just to loosen up her joints, and the aspirin never seemed to provide relief", says George. He continues,"As she grew and her condition became more complicated, her medications became more experimental ranging from extremely painful gold injections, steroids, growth hormones, to Methotrexate before they had much experience with proper dosage of this drug. The doctors tried all they knew, but treatment for the disease was not well known and she was very much an experiment for the doctors at that point". Despite the severe pain and experimental medication, Jenny strived very hard to maintain a normal childhood keeping up with all the other kids until finally around the age of 8 when it just became impossible. While she excelled socially and academically, her physical condition was deteriorating quickly. But she tried very hard to not let her disability get her down. Jenny was an accomplished and articulate public speaker, winning speech competitions as well as reading from the Bible at church. While most of us are worried about standing out in high school, Jenny couldn't help but stand out in her first electric scooter which she now had to use to get around. Still she took it in stride and her scooters and eventually wheelchairs became part of her identity in her school experience. It never was looked upon as a negative thing as she continued to excel, graduating from her high school number one in her class with the highest grade point average, a huge accomplishment! Jenny's High School Picture It was in high school that Jenny started to experience what would become the highlight of her life, teaching and helping others. She tutored other students and eventually started her own tutoring business. After high school, Jenny was determined to make her dream of becoming a teacher come to fruition. She received a number of monetary scholarships to continue her education including acceptance into Rollins College and a full paid scholarship to Stetson University because of her excellent academic performance. But she could not accept them because it would have required her to keep a full academic schedule. At this point in her life, her medications and physical condition were becoming so extreme that this wasn't an option. However, determined as ever, Jenny learned how to drive a specially designed van so she could get back and forth to college completely on her own since living away from home at this time was not possible. So she enrolled in Seminole Community College (now Seminole State College) which allowed her much more flexibility. While at SCC, Jenny was Founder and President of a support group called "Inside the Outsiders", where students dealing with handicaps could come together and share experiences and provide support to each other. Jenny also continued to tutor students from a number of local elementary and high schools, and even other colleges. She graduated from SCC with High Honors and Distinction with a 4.0 GPA, was a Member of the Phi Theta Kappa Honor Society, and an Associates of Arts in Mathematics degree in hand. Unfortunately, as Jenny was working hard to live her dream, the arthritis was working harder at destroying her body. "Over the course of her life, Jenny had virtually every joint in her body operated on and either totally replaced or fused by inserting steel rods in places like her wrists and ankles. It was surgery after surgery" reflects her father George. He continues,"Despite always being heavily medicated, none of the medications ever worked for Jenny". Still refusing to let the arthritis take over total control of her life, Jenny was able to get a job as a Mathematics and English teacher teaching students with learning or physical disabilities at a private school, and finally achieving her dream. At least for a short time. George Schott with daughters Jenny and Laura at Kennywood Amusement Park, PA Sadly, her dream became a physical nightmare. Her condition worsened until finally she had to leave the teaching field. Eventually Jenny was in so much pain that she had very limited mobility and spent much of her time with doctors, in hospitals, or at home in bed. Some of the medications she was given were so strong that they left her incoherent at times. The disease, as well as the effects of 20 plus years of drugs, operations, and experimentation, was affecting all of her internal organs. Her doctors, realizing how much pain she was in, kept her heavily sedated until finally they told Jenny that she had less than a year left to live. Jenny was at peace with this news, even orchestrating her own funeral service by selecting her clothes, readings from the Bible, and the music. With the help of Hospice, she spent the last six months of her life at home, mostly sedated to keep her comfortable as the arthritis finally took all control from Jenny's hands. And one of her last wishes was a very unselfish one. Jenny wanted to create a scholarship for handicapped students at Seminole Community College. Jenny peacefully passed away at the age of 26, a fully accomplished teacher having taught many lessons to everyone she met whether student or observer. To this day, the "Jennifer L. Schott Memorial Endowed Scholarship", which was started completely with donations in her memory, is awarded yearly at Seminole State College to provide financial assistance to other handicapped students to inspire and achieve success in their future endeavors. Her father George sits on the board that chooses the recipient from the group of students applying for the scholarship. It was years before George could openly speak about arthritis taking his daughter away from him. It also strained relationships with his other daughter Laura and ended his relationship with Jenny's mother. "Since day one, the Doctors told us that dealing with a child with a chronic condition would affect all of our relationships, especially the closest ones" he says. "The doctors also told us that Jenny was a textbook case of how extreme arthritis can consume a life and even take it". Having separated from and eventually divorcing his Jenny's mother, George found great solace and support from his current wife Lisa. "The first several years after Jennifer passed, George did not talk about it with anyone" says Lisa Schott. She continues, "Eventually, the time came where he was ready to turn this life-altering experience into something that would pay tribute to Jenny and help other families dealing with juvenile rheumatoid arthritis". George & Lisa Schott turning tears into triumph as they present Tony Ward with the first big check ($10,000) for the Arthritis Foundation. George and Lisa approached their friends for help, through the Parrot Heads of Central Florida, a social club whose slogan "Party with a Purpose" accurately describes its members' desire to make helping others a routine part of their life and a fun experience. Their brainchild would eventually come to light in the form of a Bowling Tournament to benefit the Arthritis Foundation called "Fruitcakes in the Alley", named after the Jimmy Buffet song "Fruitcakes". In its first two years, the event resulted in more than $25,000 for the Arthritis Foundation to benefit Kids with Arthritis. The third annual event scheduled for the last weekend in January 2011 is already close to selling out the bowling alley. It's a weekend festival of music, bowling, camaraderie and of course raising funds and awareness for the cause of arthritis. "We couldn't be more grateful for all the help and support of our fellow Parrot Heads in making this event a fun tradition that means so much to not only George and I, but also the Arthritis Foundation", says Lisa, now President of the Parrot Heads of Central Florida. "It has helped George tremendously to open up about and deal with all the emotions of losing a child, and rationalize what happened by helping others". Lisa also said "I am so proud of him for being such a strong, loving man and creating a legacy for Jenny that will live on and on". George and Lisa Schott can always be found orchestrating the music and announcements from the Tiki Booth at the bowling tournament. And each year, there in a picture frame sits a picture of a beautiful girl with a warm smile named Jenny Schott, who may have lost her battle with arthritis but won the war by inspiring her father, stepmother, and many others to bring awareness and necessary funds for research for a cure to the illness that never kept her from fulfilling her dreams.

Counting My Blessings

I just feel such a strong need today to count my blessings. It is very easy with a chronically ill child to be angry and hateful. It's something that unless you are or have lived it, you simply can't understand. Most times I wish more than anything that we didn't have to know what it's like. Some days I get very angry with God for doing this to us. I get very angry with the disease for raging through my sweet Beanz body and wreaking havoc on it. Then there are days like today. I know that God has a plan and a purpose for every single one of us. I know that He loves my Bean. He isn't doing this to hurt her or to punish her. Instead it is to use her and me through her. It is my life's purpose, because of what is happening to my child, to educate myself and then educate the world to the best of my abilities. I thank God for that. It has also I know given Bean a strength that she otherwise wouldn't know. It gives her siblings compassion and understanding that they otherwise wouldn't have.

We are also very blessed that Bean, despite all that she does go through, could be much worse. I have been so fortunate to connect with other JA Moms and we all share our stories with each other, many of them now with the world via blogs. A great number of these children still have not found the right med, combo of meds and or dosage of meds. Many of them struggled just to get the diagnosis. Too many of them are having their vital organs attacked either by the disease itself or by the medications they are taking to treat the disease. Some have already had surgeries on their joints and now have more scheduled. Some of them have had to have joint replacement....IN A CHILD! Way too many of them simply cannot get the Uveitis to go away and stay away and now have permanently damaged eyes. Their eyes!!! They are just babies for crying out loud!

So please, take a moment today, and count your blessings.....

3 Days & 2 Appointments

Monday this week we brought Bean to the "rheumatologist" at Brenner Children's Hospital. I was thankful to be able to get her in so quickly seeing as how I had just called Thursday last week. What a joke, what a waste! Mondays appointment confirmed we are doing the right thing by going back to Duke Children's Hospital. Her pain has been increasing in intensity and frequency for at least a month now. Oh and still exhausted! She also has swelling that comes and goes in her toes and fingers, her knees are squishy and she has been having toes and the heel of her hand turning purple and she says that REALLY hurts. And of course interspersed with all of this is periods of time where she seems perfectly fine! I love those moments, nothing brings me greater joy than to watch her skip, dance, run (which always looks odd and hobbled) and play like a "normal" healthy little girl. But I also know what will come later on. She will be laying somewhere crying that she hurts, or taking her frustration with her pain out on all of us because she is trying to hide it and deny it exists. So this guy says non of this fits JA. That simply put, swelling and pain do not come and go with JA. It's either there or it isn't. Really? That's new to me but I was willing to set that aside to look into further on my own. Turns out that's BS. I have, since Monday, heard from adult sufferers as well as Moms of JA kids that say of course it can come and go. So my next question to him was, okay so if this indeed isn't her JA then what is it because this certainly isn't normal or okay. He asked to speak to me in another room. I braced myself because I knew what was coming. He says she is either faking it for the attention, OR because she has been told that she has this chronic illness that causes chronic pain she just has it in her head that she should be in pain. Uh huh.....so riddle me this "DOCTOR" why then is it that she pushes herself way beyond her comfort zone, typically denies anything is hurting her when clearly it is, then finally reaches her breaking point only when she is in agonizing pain and THEN and only then does she stop what she is doing?? He said he has no answer for that, he just knows there is nothing medically wrong with her and that her JRA is currently under control. Right, thank you so very much for wasting my time today and doing nothing to help my child. I recently had requested copies of her records from his office which includes all her labs. I looked them over briefly and thought they really didn't look anything like her Duke ones but at the time didn't think much of it. Yesterday Hubs and I were able to access her labs from Duke (last done Dec 09) and compare them to the labs from Brenner. He has done nothing other than a basic panel that any one of us would have at say a regular yearly exam. He hasn't run a sed rate or a CRP. Now, here is the other interesting part of that. Her last time at Duke I clearly remember there being little to no visible inflammation, maybe some squishiness in her knees, her range of motion was excellent, and yet her sed rate was 26 with normal range being 0-13. So clearly with Bean she can have inflammation that you can't see. UGH. Still kicking myself for not researching this doctor before making the switch.

Now on to today. Today was her routine opthalmologist appointment to check for a Uveitis flare. I was so nervous going in there today. With all the pain she has been in I was really worried that it had come back. If that was the case I know we would have needed to discuss another med switch. I have tried to go back through the blog to see exactly when her eyes became clear. Best I can find is in February I reported that they were still clear yet in January she had about 10 cells so closing in on one year anyway of her eyes staying healthy. WAHOO!!!!! Breathing a sigh of relief on that one. The opth and her assistant her horrified by what the doctor told us on Monday. Felt good to get confirmation of the absurdity of it all from another doctor.

The unfortunate thing in all of this is that Beanz appointments at Duke aren't until March. I'm being told by friends and family to call and explain, maybe they can get her in sooner. As awful as it may sound, I have another crisis with another child that is more demanding of my focus right now. Until we can get this crisis resolved Bean will have to wait to be seen at Duke. We will simply do our best with hot baths, Motrin, rest and massages for now. I pray that this other issue will be resolve very, very soon.

Ooooh and by the way, in case you were wondering, yeah still no 504 in place. MmmmHmmm...

In The Eyes Of A Child

Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them.

Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

Matthew 19:13-14