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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.

Friday, July 29, 2011

Just a Friendly PSA

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

Sunday, July 24, 2011

Blessed & Thankful

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

Wednesday, July 20, 2011

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.