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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.

Monday, January 31, 2011

Isaiah 40:29-31

29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

This has been one of my favorite verses for awhile now. Not sure why, I just think it sounds so beautiful. Especially at the end of Lincoln Brewster's "Everlasting God", spoken in a small child's voice. Well, I guess there's a reason that it pulled on my heart, I just didn't realize why. Until Saturday, that's when it hit me.
Jenna has been in pain and beyond tired for months now, that's nothing new. Sadly it's just become a part of her life. She won't even take anything for pain anymore. She says, "The pain isn't that bad. I'm okay." I'm sorry, but that really SUCKS. She also says that none of the pain meds she has tried help, so why bother. That's just great, she is 7 years old.
That all changed on Saturday. They had a half day of school to make up a snow day. I figured, it's only a couple of hours, she'll be fine. Then, the weather was supposed to be beautiful that afternoon so we planned an afternoon at the park with friends. Again, thinking, she'll be fine. I mean, she's in pain anyway so why not get outside in the fresh air and warm sunshine and have some FUN! I forgot (yeah I know, Mom of the year) to give her some Motrin before school to maybe help ward off any pain later. I brought it to the park and gave her some while we ate lunch. Then she spent the next two hours playing and having fun. There was nothing really strenuous. She didn't run much, she spent most of her time on the swings or at the picnic table. She went down the slide a few times, watched the boys play ball. She really didn't DO a whole lot. When we were on our way home she was so quiet. A look in the rear view mirror revealed the pain on her face. I asked her if she would like a bubble bath when we got home. I could hear the relief in her voice as she sighed out the word "YES". That seemed to help revive her for most of the afternoon. By 6:00 though she was in agony. She could not get comfortable no matter what she did. I gave her some more Motrin and she finally put a pillow on the floor to lay down. She kept twisting and contorting, but, for the most part this seemed the best spot for her. Bedtime is 8:00, even on weekends. Of course Daddy was working, and Mommy simply can't carry her up the stairs to her bed. She made it up there, barely, and I tucked her in and told her to try to get some sleep for church the next morning. I serve at the first service and we attend the second. But, with Daddy working they need to come to both services so I knew that would be a long morning for her. They have their own special kids classes that they go to called Cove Kids. It's mostly teaching and learning, some crafts, some play, nothing that should be too much, ya know, for a normal kid. Mother of the Year forgot about a class for myself that I wanted to attend that afternoon. I checked with Jenna and she said she would be fine, she was excited to stay with her friends and teachers. *SIGH* Okay....if you're sure. YES! I'm sure! So we stayed and therefore didn't get home until 4:30, having gotten there at 8:30 that morning. When she is IN it, she doesn't realize the pain she is in. I guess that's a good thing? So what do you think happened once we got home? Yep, she was miserable. Gave her more Motrin, we had a quick dinner, then into PJ's and into Mommy's bed to snuggle by 6:00. She was in and out of sleep for the next two hours. Each time she would doze off she would let out a whimper. The dog was literally glued to Jenna's legs. At first Jenna was NOT happy and kept crying, telling me to make her move. After numerous attempts, and the dog pushing herself deeper into the bed and closer to Jenna's legs, I said, "Sweetie, I think she knows you don't feel good, and she wants to comfort you." Jenna looked down at her for a minute, then rubbed the dogs head and told her she's a good girl. Bless her heart. By the way, the dog followed Jenna all around the house this morning. So anyway, in and out of sleep in my bed for two hours, woke her up at 8:00 to get her into her bed, dragged her up and out for school this morning, more Motrin, dance class tonight, shot night, more Motrin I'm sure. Ugh.
So anyway, back to the bible verse. I want her strength renewed! I want her to SOAR on wings like eagles!! I want her to NOT grow weary, to WALK and not FAINT!!!!! A child should not spend days in agonizing pain over a couple of hours at the park! I am not questioning or doubting God on this so don't get me wrong there. I know that He has a plan and I trust Him in that 100%! But does that mean that I have to like it 100% of the time? Does that mean that I can't wish for something better, something different?


Friday, January 28, 2011

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.

Monday, January 24, 2011

Happy 7th Birthday Sweet Bean

Seven years ago today started out like any other morning. It was a Saturday and Larry worked on Saturdays so he was up and off to work. Kailey was 5 and Dillon was 2...awwwww. Kailey was playing on a soccer team that did indoor soccer on Saturday mornings. So, we bundled up and headed out into the frickin' frigid Maine Winter in January. "Brutal" just doesn't even describe it. I remember this day all so clearly. The sun was shining despite the frigid temps, and, it was my due date. Now, despite the fact that I had been contracting since November and had already had to have labor stopped on New Years Eve I still was not expecting anything to happen on this day. While we were at Kailey's soccer game, which BTW Dillon used to love watching as he cheered her on from the sidelines, I started contracting again. Like I said, I had been doing this since November so, nothing new. Her game was done and we headed home for lunch and to work on Kailey's school project that was due the next day. Once we got going on her project the contractions were coming on stronger and with more frequency. Did I mention, Dillon was two at the time, AND that Larry was working? Yeah, fun day! I called Larry to let him know what was going on but to stay at work for now as it wasn't time yet anyway and the kids really were being good that day. I think it was around 4 or 5:00 that I called the midwife on call to talk to her and let her know what was going on. Long story short, mine was out of town and the one I got was useless. She told me that if I was able to go on with my day to day routine that I wasn't in labor. Lady, this is my THIRD time on this carnival ride, I know the ride pretty well. I told her that SHE could stay home, WE were heading to the hospital. At this point Larry was on his way home from work and Nanny and Umpy (my parents) were either on their way over or already there to stay with Kailey and Dillon. After having many trips to the hospital that sent us back home I told Larry this time to leave the bag in the van. Oh wait, my Mother was with us. My Father stayed with the kids, alone, WOW. Anyway, so we go in and the get my big ole belly hooked up to be monitored. "Oh yes you are definitely in labor, let's monitor you for a bit while we get a room ready." An hour goes by before the nurse comes back. I was still pretty comfortable so no big deal. Then the world stopped. "There is something wrong with her heart but we don't know what. We have called the OBGYN and she's on her way. You aren't dilated enough to deliver but we are afraid that to push your labor along will stress the baby more. You may need a C-Section." From this point on a lot of things are blurred for me. I remember that I started to shake violently. The nurse, bless her, was wonderful. She was pregnant too and she was so good to me, so soothing, so reassuring. Poor Larry was a hot mess. He was sent out to get the bag while my nurse and my Mother moved me to a room. I could NOT stop shaking. Larry came back in and I asked him to get the camcorder ready. Remember how I said January in Maine is brutal at best? Well, apparently camcorders don't like the cold. It was dead. *sigh* So anyway, meanwhile another woman was having issues that apparently were more serious than mine so the OBGYN said to gently push some pitocin and watch the baby carefully while she tended to the other woman. Meanwhile, remember the midwife that said I wasn't in labor? She showed up. Oh joy. "Hey turns out I WAS in labor! Good thing we came in huh?!" Can you just imagine if I had stayed home? Shortly after getting settled into my bed, her heart....nearly.....stopped. It was awful and remembering it now still makes me cry. It slowed, and slowed and slowed some more and was barely beating. Larry ran towards the door and collided with my very pregnant nurse as she was running in. She yelled at me, "Pick a side!" HUH?! WHAT?! "QUICK! Pick a side and roll to it!!!" HUH?! I was so out of it at this point and STILL shaking violently. She grabbed my arm and yanked me toward her putting me on my left side. Slowly her heart began beating again. *PHEW* Everyone blew out a breath and the nurse looked at me, smiled and said, "I hope your comfy, don't move." What the frack, what else?? Within less than an hour that little push of pitocin got me fully dilated and ready to roll. Trouble was, I was beat. I had nothing left in me to push. The midwife was of NO help. She just kept yelling at me. The ONE good thing she did was she told the nurse (and this scared me too) to get the pediatrician on call there NOW. The nurse said, "Now? But we don't know when she'll deliver." The midwife repeated, "NOW. I don't care if he has to wait 5 hours I need him here when this baby comes." WHAT is going on?! Then he showed up with all of his heavy duty equipment. Yeah this is all very motivating, thanks. Meanwhile, midwife is still yelling at me to push and that I need to get the baby out. Really?? Oh see I didn't know that!!! She was really annoying me. When my water broke we discovered one of the problems. POOP and lots of it. Looking back at pics today she even had it in her mouth poor thing and she was SO blue :"( So let's wrap this up. I finally get her out with minutes to spare ON her due date. She is whisked away to the waiting pediatrician and poor Daddy was in the middle of the room not knowing who to be with :"( I assured him I was fine, go be with our baby girl, let her know that Daddy is there :"( The doctor got her all suctioned out, cleaned up, checked her over and she was just fine :) Aaaaaahhhhh....relief.
So it seems as though Jenna "Bean" has been a turd since before she was even born. She also has scared us and kept doctors on their toes since the very night she was born. She's our baby girl, the last of three. These 7 years have gone by so very quickly. I wish that I could stop time. Happy birthday my Sweet Bean. I love you so very, very much.
Last night we received a phone call that gave her probably THE best gift she will ever get. I have been praying for God to please help me, please show me a way to get my girl and I to the JA Conference this coming July. I want so badly for her to meet these other kids and know that she is NOT alone. We simply don't have the money to get their ourselves so I was hoping to receive a scholarship from the Arthritis Foundation. Well, it turns out that someone we have met once, emailed once, has been touched and moved by Jenna's story. This individual shared Jenna's story with their church and after praying on it all of them together, they decided that they want to help get Jenna to the conference. Words simply cannot describe how much this means to us. Thank you isn't nearly sufficient. God heard my prayers, their prayers and then He put them together in such an amazing way. When Larry got home this morning he said, "Kind of funny how Ryan talked about God's Grace for yesterday's service huh?" Yep, God is funny like that.

John 1:14-17 (New International Version, ©2010)

14 The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the one and only Son, who came from the Father, full of grace and truth.

Wednesday, January 19, 2011

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.

Saturday, January 15, 2011

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.


Tuesday, January 11, 2011

A New Facebook Page


If you are my friend on FB, or if you follow me on Twitter, then you likely already know. But, if by some chance you do neither (and WTH is wrong with you?!) then I want to let you know about ~Beanz Buddiez~. It's a page I started on FB to help bring even more awareness to JA. If by some chance, there were people missing the info here, on Twitter, on my regular FB page, maybe they will see it there. As I've said before, I am on a mission. I won't rest until the world understand the true severity of this disease and the need for a cure. So, go to the ~Beanz Buddiez~ page and "LIKE" it please, then suggest to all of your friends that they do the same. Thanks lovies!

Thursday, January 6, 2011

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.....

Wednesday, January 5, 2011

Let's Move Together!!!

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...

Sunday, January 2, 2011

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