Untitled.

Dear Blog,

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

Sincerely,
Me

And in other news...

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

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

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

Another "ARTHRITIS CHARITY AUCTION"!

We have three items up for bid on Ebay!! My husband was recently helping our neighbor move and they came across two vintage camcorders and one vintage instant camera. Our neighbor knew that we were raising funds for the Arthritis Foundation and he told us to take them and see what we could get for them. Unfortunately one of the camcorders seems to not be in working order but it's still a really cool piece and who knows? Maybe YOU know how to fix it! Our last "ARTHRITIS CHARITY AUCTION" netted us $75 that we were able to donate. We are hopeful that these vintage finds can bring in a hefty donation. Think of the photographer in your family, think of that collector that you know, and then dig deep. Here are the links:
Continental Colorshot 2000

Sankyo Sound XL-220 Super 8

Minolta Camcorder

Here is the why for all this: (facts from the AF)
*Nearly 300,00 children under age 17 are affected by juvenile arthritis
*JRA, affecting more than 50,000 children, is the most common form of juvenile arthritis and one of the most common childhood diseases in the United States.
* Arthritis and related diseases, such as JA, cost the U.S. economy nearly $128 BILLION annually in medical care and indirect expenses.

Common Symptoms of JA:
*PAIN, swelling, tenderness and stiffness of joints, causing limited range of motion.
*JOINT CONTRACTURE, which results from holding a painful joint in a flexed position for an extended period.
*DAMAGE to joint cartilage and bone leading to JOINT DEFORMITY and IMPAIRED USE of that joint.
*ALTERED GROWTH of bone and joints.

Did you know:
*The Arthritis Foundation has granted $380 MILLION to research across the country since 1948.
* Over the past 10 years the AF has funded over $3.2 MILLION in the Carolinas. Including but not limited to, aquatics programs, tai chi programs, Kids Rheum which is an INCREDIBLE support system!
* It costs the AF $1200 to send a family to the Juvenile Arthritis Conference.

"ARTHRITIS CHARITY AUCTION"

C'mon, you know you want in! Simply getting folks to shell out cash, even $10, is proving to be nearly impossible. So, we are having to get creative. I have been trying to get people to buy some Scentsy (link is in the side bar to your right) so that I can donate 100% of my commission from the party, sadly only 2 people have ordered, so, so far I can donate about $3 from that. We are trying to pull together a car wash/yard sale with a lemonade/cookie stand in the next few weeks as well.
And here is the latest, a Dell laptop up for bid on Ebay through Monday!! This was our 1st ever Dell laptop and it still runs GREAT! Anyone that knows us, knows that we take care of our things. Don't miss out!!

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.

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!

I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.