Beautifully Heartbreaking

Lots of things went through my head while watching this. Mostly they were very ugly words. This disease, and the fact that no one seems to care makes me so angry. WHAT IF THIS WERE YOUR CHILD?! This is hands down THE best JA video I have ever seen. Thank you to Esella's family for putting it together.

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.

Is it Spring yet????

So I was I mentioned here in this post a couple of weeks ago, we somehow managed to get through Winter fairly unscathed. But, I figured, one ear infection is still really awesome considering all the crud going through her classroom. She started a 10 day course of Omnicef on Wednesday the 9th and finished on Saturday the 19th. On Sunday the 20th my Mother flew in with my 12 year old daughter from Maine, LONG story not for here, and I was really hoping we could all have a healthy visit for the upcoming week. Having JUST come off an antibiotic, what were the odds really of Bean coming down with anything?? HA! On Wednesday the 23rd Kailey, my Mom and I were having a "big girls" day out at a mall about 45ish minutes away while the small ones were at school and Daddy was sleeping (after working all night). Around 1:20 my phone rings and it's Beanz school on caller ID, CRUD. I answer, and it's her teacher, sounding very apprehensive on the other end, DOUBLE CRUD. She swears that Jenna was FINE all morning, then after lunch Jenna told her she was tired so she told her go ahead and lay your head on your desk and just rest. She said like *THAT* she was asleep. She went over and felt her and she was burning up. She took her temp, 103.7. She called me immediately but of course we were 45ish minutes away. I tried calling Daddy repeatedly, but his phone was silenced. Urgh. When I got to school she was asleep in the nurses office, Poor Bean. By this time of day I knew not to even bother with her peds office so we went straight to Urgent Care. Poor thing couldn't stay awake, her breathing and pulse were way too fast and temp still up. Same high temp as with the ear infection yet her body reacted totally different. Since her throat was red and pussy they swabbed her for strep, no brainer, it was positive. Back on antibiotics! She was off for less than a week! Considering all this, I made the executive decision to hold her MTX this week. This way her body can have a chance to fight off ALL the infection, regain some strength, and then we'll hit her with Humira and MTX next Friday.

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...

2011 JA Conference

The site is finally up!!! WOOT! The info that we have so desperately been waiting for is here! We are going into our third year on this journey but this will be our first year at the conference. Year 1 I don't think I knew anything about the conference, or if I did, I didn't think we needed it. HA! Year 2 we just had too much going on in our lives to even think about getting there. Year 3, this is our year! I am so excited to do this, I just can't even begin to describe it. Trying to figure out if we will go as a family since the rates are all the same anyway, or if just the Bean and I will go. If it's just the two of us we will take the train which will be way easier for her. If we all go we have to drive since 4 (or 5, another long story) train tickets will be too expensive. The drive will be painful for Bean, but then we aren't tied down to the train schedule which quite frankly, bites. So, lots of decisions to be made, but, bottom line is, at the very least, Mama and Bean WILL be there! And if Daddy and Bub have to stay home, they announced yesterday on their Facebook page that they will be doing webstreaming this year. SWEET! Not the same as being there but at least they can join in and learn with us. I cannot wait to meet all of these people that I have been blessed to come to know in a virtual world. I will finally be able to speak with them face to face, hug them, laugh with them, cry with them, SHARE with them, in person, in real life. SO very blessed. Thank you God.

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!