Tuesday, April 29, 2008
I just ran thinking how amazingly grateful I am for where I live. Here I was running next to a lake, there were no bombs, no war... I feel extremely privliged to live in such a beautiful & peaceful environment & country.
And when I see Mt. Hood looking like this, the gratitude flows even more. I am loving to live in a little bit more silence. Its been amazing what I have "heard" in the "quiet"!
Sunday, April 27, 2008
It’s Not Just Your Grandma’s Ailment: Arthritis Common in Children
Aches and pains are common in children and teens. Most of the time, they are fairly benign and dismissed as growing pains. However, musculoskeletal pains can signal several serious conditions, says Sangeeta Sule, M.D., pediatric rheumatologist at Johns Hopkins Children’s Center, including juvenile rheumatoid arthritis (JRA), the most common form of arthritis in children and teens.
Newswise — Aches and pains are common in children and teens. Most of the time, they are fairly benign and dismissed as growing pains. However, musculoskeletal pains can signal several serious conditions, says Sangeeta Sule, M.D., pediatric rheumatologist at Johns Hopkins Children’s Center, including juvenile rheumatoid arthritis (JRA), the most common form of arthritis in children and teens. JRA and other rheumatologic conditions affect an estimated 294,000 American children, according to the Centers for Disease Control and Prevention.
As National Arthritis Month approaches in May, Sule and other experts at Hopkins Children’s invite coverage of the challenges in detecting and treating JRA, an autoimmune disease, in which the body mistakenly attacks its own tissues and organs, and related joint and muscle disorders in children.
“Children get arthritis, but since it’s rarely the first condition that comes to mind when a child complains of pains, substantial damage to the joints can occur before the correct diagnosis is made and treatment begins,” Sule notes.
Distinguishing harmless aches and pains from arthritis isn’t always easy. Often, JRA is a diagnosis of exclusion, and no specific test can confirm or rule it out. Several blood tests and imaging tests, such as X-rays, can help a doctor distinguish JRA from garden-variety pains.
For parents, Sule offers the following telltale signs, which should prompt a visit to the pediatrician:
• Stiffness, swelling and redness of the joints
• Fatigue and malaise
In contrast, growing pains usually occur between the ages of 4 and 12 and cause:
• Deep aching and cramping pain in the thigh, shin or calf.
• Pain that occurs at night, often waking up the child. Growing pains are never present in the morning, which distinguishes them from rheumatic conditions, where the pain is more severe in the morning or constant throughout the day.
• Aches triggered by exercise the previous day.
Founded in 1912 as the children's hospital of the Johns Hopkins Medical Institutions, the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, treating more than 90,000 children each year. U.S. News & World Report ranks Hopkins Children’s among the top three children's hospitals in the nation. Hopkins Children’s is Maryland's only state-designated Trauma Service and Burn Unit for pediatric patients. It has recognized Centers of Excellence in 20 pediatric subspecialties including cardiology, transplant, psychiatric illnesses and genetic disorders. For more information, please visit: http://www.hopkinschildrens.org
How inspirining! Its on my to-do list to talk to my own sorority, Alpha Chi Omega, to consider a fundraiser of this sort!!
These girls are from Middle Tennessee State University - Way To Go!!
Saturday, April 26, 2008
At 2+ cells in each eye, Charlotte's meds looked like this:
Topical (eye drops)
Methotrexate (weekly injection)
Two weeks later, starting remicade, & now at 1 cell per eye, her meds look like this:
Topical (every 3 hours)
Check out the cute leg warmers doing their job AGAIN! These pictures show her "hooked up" - its pretty incognito, can you make out where the tube goes in? Pretty swift!
The benedryl DOES work on this girl & she was wiped, but stayed awake the whole time & just laid there on the couch watching her shows. Note to self, bring our own pillow, not as many toys needed, she'd rather watch & lay because she's so sleepy.
I thought we were supposed to go 0,2,4 weeks on the remicade meaning every two weeks?!?!? That was my interpretation of that math sentence, but evidently if you keep my "key" then its 0, 2, 6. So he said that if our trip to Boston to see Dr. Foster shows ZERO cells - drop the appt. on the 9th & bump it forward two more weeks (to be 4 weeks since last remicade) & if there ARE still traces, keep the appt, THEN we will go every 4 weeks.
So Charlotte rock & rolled the whole procedure like a total champion, we got home around 315 & decided to pick up Emma from school & go to the driving range w/ Charlotte & Emma (see pictures - Ellie was at Ballet w/ Marmee).
Different experience two weeks later & what attributed to it? I think starting earlier in the day for sure helped, it felt like it went faster, but we were still there for 4.5 hours. So i think starting earlier, we were able to get home in the afternoon & still have some "day" left. Learning how to tackle her down for the initial IV administer definitely helped too. At 2 1/2, Charlotte has learned to take all this experience with some grace, patience & a strength that I admire & love. She didn't lose the feisty, never fear, but she wasn't "angry" like I feel she was 2 weeks ago.
We are talking a lot to her about all of this, there are no surprises. She knew that Ellie got to go to "Marmee & Poppa's" and she had to go back to the hospital.
Tuesday, April 22, 2008
I think that if I didnt get Charlotte into a dance class, there would have been major upheaval. Why would I think this? Only for the fact that when I last dropped Emma off at Ballet, Charlotte ran into the middle of the floor plopped down in protest & refused to leave screaming "MY BALLET, MY BALLET."
Thank you to the mom witnesses who whispered, "Um.... have you ever considered Kinderdance?" Kinder what? One phone call later & Charlotte has a PURPOSE for wearing the tutu!! (although you notice she didnt wear one here??? becaues she wanted to be like her sisters - and they dont wear tutu's!! Remember, this is SERIOUS business for this little girl!)
I dont think I have seen anything cuter (but I might have said that 4 years ago when I watched Emma in her 1st class in Eugene...). But for Charlotte & her appreciation for the love of movement, I have a different appreciation. I couldnt stop tearing up the entire time, I choked them back though & just snapped pictures from behind the glass wall like a classic mom stalker! :) The flash gave me away & Charlotte whipped her head around to see me & started waving emphatically! Oh that sweet girl!
Ellie asked if she had to go to school, "I want to watch Charlotte in her class!" So when I told Emma & Ellie that Charlotte has her OWN recital (becaues they are in one themselves), they were very excited! What a crack up - Charlotte in a recital, it makes me smile & shake my head at the antics that could arise at that little gathering :) Stay tuned - its in June!
FYI - while i am typing this, my 3 little sweeties are running around the downstairs & are playing the 2 little pigs & the big bad wolf. But it seems they are changing the story around a bit, i hear them saying, "Charlotte you are the big bad pig!" Yet there is a Big Bad Wolf too! "RUN! RUN CHARLOTTE, RUN FOR YOUR LIFE!" Ellie is telling her :) hahaha!!
Wednesday, April 16, 2008
Tuesday, April 15, 2008
Well ... here goes the ride! :)
PS _ great political news - Senator from Oregon, Ron Wyden cosponsored the APCC act (Arthritis Prevention Control & Cure Act) HR 1283 - he is joining our WA Senators, Patty Murray & Maria Cantwell in co=sponsorship. Where is Oregon's republican senator Gordon Smith!??!
Friday, April 11, 2008
(The other two girls were: Charlotte went to bed early tonight - its exhausting yelling at nurses all afternoon & Emma went on date night with Daddy to have dinner & to get her new golf clubs - getting ready for the summer).
Here's what I am thankful for:
- A girl who's a fighter. Its hard to see my baby in pain when they put the IV in & it pops out so they have to try the next vein (literal sweat is beading off my face as well as Charlotte's. Picture Ryan dancing behind the nurse trying to get Charlotte to NOT look at the IV continuing to come in and out & fish around). She let them know how mad she was today - OH BOY. I told her that she had to calm down, she just had to calm down & it would be over soon. And truly, "Charlotte, even Dior Waterproof Mascara is not going to hold up on a day like today if you continue to scream. Shhhhhhhhh!" But truthfully... I am glad she's able to share her dislike, her anger & her spunk, even if it does make me cry a little.
- Nurses who appreciate spunk. Our nurses knew us from our January 3-day adventure with the steroid Methylpred (which worked, but not for long). They said, "We knew Charlotte was here when we heard the scream of 'NO' down the hall! We are SO happy to see her" - but they meant it! They werent being facetious in any way. But seriously - look at this girls face of furry & frustration & you KNOW you have to have some amazing nurses who are patient, loving & sweet to continue laughing & being so congenial! And now that we are "regulars" we had the chance to converse (It was a slow friday in the Day Peds Treatment Center today!) & get to know them a little more. What a small world too: One nurse (Chelsea) is getting married to a Theta Chi brother of Ryan's (a few years older). Another nurse was a Kappa at UPS & so I jotted down some names (aunt carol that you might now) of her sorority sisters! She was just a few years younger than my aunt who is her sorority sister. ALSO: the nurses gave Charlotte her MTX shot this week but intravenously so we dont have to do it on sunday (YAY!!!! thank you for saving me a week!)
- SUPPORT! OH my word - we have amazing, supportive, giving, spirited friends. Friends that are willing to give up their afternoon just to come & hang with us, bring us lunch, chocolates & toys for Charlotte. Friends that didnt allow us to cry in a pity party, but continued to stay & talk & keep us stronger. Dawn & her sweet girls Emma & Ellie (! yes!! Isnt that terrific?!) & Cindy - Ryan & I appreciate you SO MUCH. Thank you, thank you, thank you! Just your understanding, your ears, your thoughts are so appreciated, so valued & I hope you realize what an impact you have made on Ryan & me, to help us be strong, to help us be more knowledgeable. Thank you!
- FRIENDS part 2! My neighbor Kim filled up her ipod with Mickey Mouse Clubhouse, Signing Times & Sesame Street & loaned it to us for the afternoon. It convinced me that NO portable DVD player purchase is necessary, not only is this more maneuverable, but easier to manage & tote around! And it was so smooth to just play episode after episode (at LEAST 6 episodes of Mickey) because we were there from 12-5pm - it was a slow drip!. The emails that you all sent saying you were thinking of us today - i felt it, thank you for your good & positive thoughts! (And Laura, Ba-Ba Elma was a HUGE HUGE hit, she's sleeping with him tonight! Thank you for the JRA 2's fellowship!)
- Our Dr. - He spent so much time with us today, talking, sharing. In between patients, he would come up to our floor & check in on us, not once but twice. We appreciate him immensely because of his caring, his knowledge & his passion for doing the RIGHT thing. We know he's serving Charlotte well! Let me also say I am thankful for Dr. Goodman & Dr. Foster who have all been working together cohesively on Charlotte's behalf. We look forward to our trip to Boston to meet Dr. Foster in person (do not have that set yet - on Monday!) & have an extremely thorough & detailed examination done.
- My parents - so glad they are back from their trip & they are able to live their life but be right there for the girls so that life can be normal for them without any hiccups. They were traveling during the the 3day methylpred in January & it was hard to not have them here & to schedule the girls to be here/there/everywhere. Now I know that's one thing I dont have to think about, its just done. My mom said, "I wish I could be there" - just like a mom I know she doesnt want me to go through this, she would easily replace herself with me. I love her for that, but she's right where she needs to be & so is my dad (Ellie will bring you a box of band-aids, she said you cut yourself today out in the yard?! Thanks for teaching Ellie how to pull weeds!!!).
- Babylegs Leg Warmers - Again, out of sight, out of mind. They were tremendous. Bought two new pairs, she chose the pink herringbone to wear today. And she was so proud to share with Nurse Chelsea that, "They came in the mail! I got new ones! I like pink!"
- Our family - I am thankful for the girls who asked how the day went right when we got out of the car. How excited they were that Charlotte got a new toy (& they asked Charlotte to show THEM!, so generative!) & how sweet they were to ride bikes with her up & down the sidewalk even though she was crankier than crank because of the long day. I am so thankful that Ryan has the career flexibility to be at all of these milestones because he would be frustrated if he couldnt be. I appreciate him being there because of his calm demenor & his understanding of Charlotte & her personality & his willingness to jump when we ladies say jump :) He's a prince!
- The Small World - The nurse connections were one thing, but when we first got there, we settled into our room & watched a sweet chunky little angel waddling by (just a new walker!). I commented out loud on her cute babylegs legwarmers (yep they are popular!) on her sweet little legs. But I said it continuing to look at the beuatiful girl, I didtn realize that as I looked up, I knew her Momma as an OSU sorority girl - a comrade my senior year of being a rush counselor with me. She was a Kappa Delta, but we spent many long nights togheter wtih representatives from other chapters helping the freshman girls of OSU decide who to pledge allegiance. I appreciate reconnecting with her, even if its not the most positive of circumstances that we are seeing each other under, our paths are crossing again & its opportunity for friendship & support.
- STRENGTH - just writing out these positives, gives me strength to know we CAN get through this, we can endure the screams & the agony of the anxiety in our baby. Because there are positives that come out of "these" situations & by focussing on the path of healing will help us feel its road is much shorter.
Now I will tell you that its supposed to be 75 degrees this weekend! And in the Pacific NW, that's something to party about! So we are hitting the pavement tomorrow morning for a run then it will be off to the driving range to try out the girls new clubs. Sunday - its the BEACH, for a day excursion! No matter how cold it is over there, I have to remember to bring extra clothes because somehow the girls ALWAYS end up in the water (I give it about the 1st 15 minutes!).
So Carpe Diem! Celebrate Health!
Thursday, April 10, 2008
Friday (tomorrow) is the 1st Remicade IV, a 3 hour process, like chemo. We sit, hang out, the nurses up the speed of it every 15 minutes, they take her vitals, she screams at them, she gets used to it or she just gets worn out. Momma & Daddy laugh in nervousness knowing Charlotte is adamant & vocal in every way possible & hoping that the nurses dont think she's an ill-behaved child, hoping they understand how much she hates this but how its so vital for her health.
UGH. For those on remicade normally, I am sure you get used to it. For a 2 1/2 year old, hooked up to ANYTHING is awful. To be pierced with the needle is agonizing. To know you have to do it again... sad. At least we get to skip our methotrexate shot this week - the nurses will give it tomorrow with the remicade, so at least thats one less shot for her & not Momma's fault.
Her eye appt yesterday (we go every other week) showed that her eyes are still flared at a 2+. So this is the next step & we hope ba-ba baby Elmo will help ease the anxiety! I personally, could have a sedative & be ok admitting that :) But it will go by & it will work & life will resume.
Ryan has date night with Emma tomorrow & they are looking forward to an evening out to dinner & then to GOLFSMITH where Emma, like Ellie the week before, will get her own set of golf clubs in a cute pink bag! Lessons start in June, but the driving range is weekly to have a good time with us & hang with us! Charlotte begged tonight to go golfing with Daddy :) I am sure it wont be long, you cant keep that girl down when both older sisters are active!
Hey - on a shopping note - look what I got Tottie today, so appropriate right?
And Ellie SOOOO fits this shirt & I have been picturing this shirt for the 1st day of school since i first found it - some jeans, cute sassy blonde hair! This girl means business & that means the rock & roll of the alphabet :) GO ELLIE!Got these at KITSEL w/ the promo code COOL for 10% off. Use it - there's some cute things!
Even cute shirts & Elmo's cant avoid the inevitable - need to continue packing that FUN bag for tomorrow! Keep the prayers & positive thoughts coming - we're going to get rid of this uveitis!!!
Tuesday, April 8, 2008
Its all about raising awareness of juvenile arthritis, the Arthritis Foundation and the critical need to pass the Arthritis, Prevention Control and Cure Act (S.626/HR.1283) and increase federal funding of arthritis research and public health.
Please read & hopefully we can help change the way arthritis research and public health is funded and health care policies are made. Http://www.washingtonpost.com/wp-dyn/content/article/2008/04/07/AR2008040702140.html
With Pain, Some Gains
Nine-Year-Old Seeks Help for the 300,000 Kids With Arthritis
Tuesday, April 8, 2008; C12
Eric Terry is like any other fourth-grader -- except when he's not. Yes, he plays basketball and baseball, loves pizza (with sausage) and longs for a dog. But he also has juvenile rheumatoid arthritis, which leaves his joints so swollen and painful at times that he lies in bed and cries.
Eric's parents were stunned when his condition was diagnosed at age 2. "Like many people, I thought: Kids don't get arthritis," father Reggie Terry says.
But they do. About 300,000 kids in the United States have arthritis (pronounced are-THRITE-iss). Eric, who is 9 and lives in Woodbridge, has become a spokesman for them, going with his parents to Capitol Hill recently to urge lawmakers to fund research aimed at finding a cure.
Juvenile arthritis is "very difficult to diagnose," says Patience White, a physician who works for the Arthritis Foundation. "A doctor has to make sure the symptom the young person is having isn't related to other things."
Sharp Pain, Sharper Comments
When Eric's immune system goes haywire -- attacking the tissue that lines his joints -- he feels pain in his knees, ankles, elbows, neck and back. "It hurts really bad," he says. The stiffness even changes the way he walks.
To beat the disease, a person needs to stay active.
"In basketball, I score a lot of points. In baseball, I can hit hard and am good at catching. I like golf, too," Eric says. He is able to play sports in part because of medication that keeps his joints mobile and his muscles strong.
Eric has learned to handle stares and the occasional mean comment at school. "It's real hurtful and stuff because there's not anything I can do about it," he says. If someone gives him a hard time, "I'm like, 'Hey, I have arthritis. I know you don't know what that means, but if you had it you'd probably cry.' "
The Arthritis Foundation helped the Terrys understand and manage his condition. Eric and his brothers -- Tony, 17, and Chris, 14 -- go on fundraising walks, and Eric has become a forceful spokesman for people with the disease.
Seeking Help on Capitol Hill
Getting help can be hard for some families. Arthritis medications are expensive, and finding a children's physician is not easy. There are fewer than 200 doctors in the United States who specialize in treating kids with arthritis. Virginia, where Eric lives, has three. Maryland has two, and the District and 10 states have none, according to the Arthritis Foundation.
Knowing this is partly what brought Eric and other children with arthritis to Capitol Hill to talk to lawmakers and others about getting more funds for research on the disease.
Eric was asked what he planned to say to any senators he met. "I'm gonna be like: I have arthritis. It really affects me. I can't play as much. People laugh at me."
It was a long day as Eric, in a sleek suit and tie, and the others trekked across the marble floors for hours, from one office to another, telling their stories.
By afternoon, pain and fatigue showed on Eric's face. His pace had slowed. His right leg dragged slightly. After his last official stop, he paused in front of a congressman's office and slowly lowered himself to the floor. He rested his head against his mother, Cynthia.
When asked "Do you think it worked? Do you think you got through to anyone today?" he closed his eyes, smiled and nodded silently -- yes.
-- Brenna Maloney
Arthritis and other rheumatic diseases affect an estimated 300,0000 children in the U.S.
Charlotte is one of those 300k!
Charlotte is currently taking 4 different medications to find the right medical cocktail for her in order to get the arthritis in her eyes under control (yes, that’s another place for arthritis to go!). In the 6 months since she’s been diagnosed (on her 2nd birthday), arthritis has gone to her 2 knees, an ankle,a wrist & both eyes.
The 3rd Annual Race for CARRA is a beneﬁt for the Childhood Arthritis & Rheumatology Research Alliance. All proceeds go directly to CARRA to help fund research to ﬁnd the cause and cure of Arthritis and other Rheumatic Diseases in children.
The Race for CARRA is a non-timed, non-competitive 5k run/walk for the entire family.
Sign up online: https://www.signmeup.com/site/reg/register.aspx?fid=4F2VCK7
WHEN: 8:30 on Sunday June 8th, 2008. Strollers are welcome.
WHERE: The route takes you along the Willamette River on the Eastbank Esplanade and around the Oregon Convention Center.
ADULT 5K RUN/WALK $25
CHILD 5K RUN/WALK $12
We would be honored & humbled to walk with your family!
Love, Erika, Ryan, Emma, Ellie & Charlotte
Friday, April 4, 2008
I am accessory inept, but I saw this KOI fish (or is it a goldfish? See, now I am second guessing my knowledge of japanese vs. chinese fish... anywhoo...) & thought how fun it would be to put in our entry way & fill with our umbrella's (that we always grab to run up & down from the bus stop). $285... we should be able to find cheaper right?!?!?! Koi/Goldfish bring good luck right???
INTO THE WILD
I am not a fan of this movie that came out in 2007. I didnt even get through the whole thing. But I have to tell you - from beginning to end - this is one of the best CD's I have listened to in awhile. Eddie Vetter is classic & soulful. Been listening to this so much, but how can it get to overload?!?! Never!
Wednesday, April 2, 2008
Tuesday, April 1, 2008
They didnt mention a small (but growing), newer organization, one that I will be working to raise $ & awareness for (more to come!):
Childhood Arthritic & Rheumatology Research Alliance
CARRA is a network of pediatric rheumatology clinics and centers that develop and perform high quality clinical research in the field of pediatric rheumatology. The Mission of the alliance is to foster, facilitate, and conduct high quality clinical research in the field of pediatric rheumatology aimed at improving the health outcomes of all children with rheumatic diseases.
And now the ones that they DID mention...
The Arthritis Foundation www.arthritis.org
The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services, and research. There is a section of the Arthritis Foundation website that is devoted exclusively to rheumatoid arthritis and offers information about treatment, research, causes, and diagnosis. In addition, the site provides links to up-to-date articles about RA, including the impact of diet and lifestyle, new developments in treatment, and managing symptoms.
Arthritis National Research Foundation (ANRF) www.curearthritis.org
ANRF provides funding for highly qualified researchers associated with major research institutes, universities, and hospitals throughout the country seeking to discover new knowledge for the prevention, treatment, and cure of arthritis and related rheumatic diseases. The site provides clinical trials information and a bibliography.
Hospital for Special Surgery (HSS) www.hss.edu
With the largest group of rheumatologists in the United States, HSS is a world leader in the research and treatment of rheumatic disease. This site provides tips on self-care and medication, support and educational programs, and information on RA research.
A subsidiary of Aetna, InteliHealth provides information on rheumatoid arthritis and healthy lifestyle tips. More than 150 top healthcare organizations contribute to InteliHealth's content, including the National Institutes of Health and the Harvard Medical School.
The Johns Hopkins Arthritis Website www.hopkins-arthritis.org
This site provides interactive, educational information for healthcare professionals about RA. It features a "Patient's Corner" with lifestyle information.
Mayo Clinic MayoClinic.com
Mayo Clinic Health Solutions' award-winning consumer website offers health information and self-improvement tools. MayoClinic.com's medical experts and editorial professionals bring you access to the knowledge and experience of Mayo Clinic for all your consumer health information needs, from cancer, diabetes, and heart disease to nutrition, exercise, and pregnancy.
National Institutes of Health - Medline Plus
This site offers information and links to various resources about rheumatoid arthritis symptoms, treatment, research and disease state.
Medicinenet.com provides comprehensive clinical information about rheumatoid arthritis authored by physicians for a patient audience. The site also includes patient stories and links to online articles about RA.
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) www.niams.nih.gov
NIAMS is a division of the National Institutes of Health that has arthritis as a primary focus. This site functions as an information clearinghouse and features useful online handouts on arthritis.
National Library of Medicine www.nlm.nih.gov