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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Saturday, March 26, 2011

"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!!

Sunday, March 20, 2011

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.

Monday, March 14, 2011

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.

Friday, March 11, 2011

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.


Thursday, March 10, 2011

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!

Sunday, March 6, 2011

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.