Jingle Bell Walk & Music to our ears!

Jingle Bell Walk for Arthritis 2012

Dear friends and family,

Carrie & Skylar -
"Our marketing team!"

We had an excellent turnout for the Jingle Bell Walk for Arthritis last Saturday!  We had friends, family and coworkers walking with us.  Nothing could have prepared us for the outpouring of love we received in support of our littlest princess.  We set an ambitious goal of $3500. (My hope was to raise $3000.)  That goal was crushed, with a final tally of $4140! We couldn't be more excited!  We were the top fundraising team at the event! 

My dear friend Carrie made over 30 necklaces/awards with a pendant that doubled as a Christmas ornament and had Lucianna's picture and the year on it.  Mom, Dad and big sister all had a variation of the photo on our pendants.  What a thoughtful idea, everyone loved it! Thank you Care (143*872).

I have never participated in a charity walk before but have donated many times to the Breast Cancer walk. We carried a banner that said, "Walking for Lucianna! Our Juvenile Rheumatoid Arthritis and Uveitis Champion!" and when other walkers and runners saw it, they would clap for us and cheer for Lucianna, yelling, "Go Lucianna!".  These moments will live in my mind forever.

I wish I could thank everyone that helped us to meet our goal in this blog post, but you know who are and so do I.  We are deeply grateful and touched by your generosity.  Thank you for caring, for checking in with us to ask how she is, for reading this blog and for opening your wallets.  You sent a clear message that it is not okay for a child to suffer with pain, or worse, face loss of sight because of this disease.  

"Mommy, I wanna 'wun!"

Friday, December 7th, marked the 6 month anniversary of the onset of her symptoms.  I didn't realize we would have such a long road to get her better but there is one thing I have come to realize with absolute certainty:  I am grateful for JRA.  It has opened my eyes to so much and I have learned so much. This disease has taught me to never take a single thing for granted and has made me grateful that my child has a disease that is NOT going to take her from me.  I saw a St. Jude's commercial on TV, (a charity we also donate to), and Jennifer Aniston was interviewing  two young girls who clearly had cancer.  If you can bring yourself to watch it, the behind the scene's clip is here:  Jennifer Aniston's St. Jude video  It is a tangible reminder that there are parents out there who face the unthinkable diagnosis.  Let's not forget these families.  I personally love my St. Jude's return address labels!

What a great day!

At a time of year when we all count our blessings and try to be thankful for the gifts we have in life, I am thankful for JRA, [Uveitis, not so much. lol.]  I am hopeful that 2013 brings remission, good health and nothing but gratitude. 

Lucianna had her two week follow up eye appointment today.  No inflammation! Drops are now down to 1 dose, left eye, every other day.  What a fantastic Christmas present!!! This was music to our ears!  We see her rheumatologist on January 10th.  We hope to learn that Lucianna is free of any inflammation in her joints and that her labs come back with no signs that the medicines are causing any stress or damage to her liver.  While we wish to just get to the end result...we are taking baby steps.

With that, I will end with Lucianna's favorite Christmas song:

HAVE A HOLLY JOLLY CHRISTMAS! (video inserted)

Merry Christmas everyone!

Love,
Lucianna's proud and grateful mama

Lots to be thankful for!

Too bad for them that Mommy likes "matchy-matchy".

 ***Blog will have a video for those of you getting this on your email.
  
Dear friends and family,

Lucianna had her eye appointment today and we were thrilled to learn that she is continuing to improve!  The pediatric ophthalmologist has given us permission to drop her eye drop dose to once a day for the left eye and once every other day for the right eye.  The dilating eye drop, (the one that burns), is only in her left at night, and she tolerates it really well now.  She no longer cries or whines, she does it and then says, "where's my gummy vitamin?" (Which is her treat for the eye drop...instead of all the jelly beans I started out giving her!)    Considering that there was a time where we were administering drops every hour, (for what seemed like an eternity), we are grateful for this news. 

We love watching the Macy's Thanksgiving Day Parade!

Lucianna is also showing amazing progress on the Methotrexate, ("MTX"), not only with her eyes but with her joints.  While it was no easy decision to move forward with putting her on this medication with all it's side effects and potential health risks, I truly believe that swift action in the treatment of her conditions will make a huge difference in her long-term outcome for a medically induced remission.  (Just my personal opinion.)  To anyone on the street, you would never know she was sick.  No longer does she show signs of stiffness, or a funny walk, (except in the morning/after nap).  And with each passing week, she seems to be able to do everything that other kids can.  She rides a bike, dances, jumps and can now climb the steps again on her own.  It took about 10 weeks on the MTX to see this massive change...but it was worth the wait.  So how long we will have to give her this medicine?  We can expect her to be on it for probably 6 months to a year.  We need to be sure that she continues to improve with no relapses before her rheumatologist will consider weaning her.  So we watch, we wait and we hope...

On Saturday, December 8th, we will walk in Arlington, VA for the Jingle Bell Walk/Run for Arthritis.  We have 52 people who donated in support of Lucianna and will have 31 of those wonderfully generous people walk with us!  We are so fortunate to have such an awesome support group!  So far we have raised over $3000!!!!  Thank you all for opening your hearts and wallets to support our little girl!  I plan to send our walkers an update late this week with all the details.

So nearly 6 months after learning our baby girl has JRA and almost 3 months after learning she has Uveitis, she is doing well.  My brain tells me to be cautiously optimistic, but my heart is exploding with joy and profound encouragement. 

 
I will send another update after our Jingle Bell Walk/Run and her next eye appointment which is December 11th.  See you with bells on December 8th!

Love,
Lucianna's proud and joyful Mama   

Wax lips - what better medicine!?!?

Dear Friends and family,

This photo is the girl's first experience with wax lips...a childhood favorite of mine during the Halloween season!  Despite the severe storm we are expecting, we did indeed have her weekly eye appt this morning.  I was not excited about her and her Daddy driving in this weather, but we needed to be sure she hasn't taken a turn for the worst.  Uveitis can have many ups and downs over the years...

We are pleased to share that her eyes are continuing to improve.   We are still attempting to wean her off the steroid drops and are looking forward to the appointment that we are told, "she can discontinue them".  The risk of these drops can do the same damage as the Uveitis eye disease itself (impaired vision or loss of vision altogether)...but we can't "not" do anything.  We are "realistic" about the disease and the fact that she may be improving now, but there is no guarantee that this is her only episode/flare.  She can have many of them, unfortunately.  Nonetheless, we are cautiously optimistic!

So today, we count our blessings and feel grateful for all the love and support of our friends and family.  A special thanks to the Calico Cottage family for supporting us for the Jingle Bell Arthritis walk.  It says so much about the wonderful people who work with Lucianna's "Nonna" and opened their wallets to show their love and support.  We love you all.

Wishing safety and continued "electricity" to our family and friends in WV, VA, PA, MD, NJ & NY.

Update:  Halloween was a great night!  Both the girls did well, we pushed Lucianna from door to door in her stroller and she walked up each side walk by herself.  She just needed some assistance getting up and down the steps to the front doors of homes.  We were very proud of her and Bella was a great helper!  Their choices out of their Halloween candy bags:  Fruit snacks (both girls), candy corn for Bella and Twizzlers for Lucianna. 

"Flower Princess with Wings" and a "Scary Ghost!"

Much love,
Lucianna's Mommy

No good news to report but we are staying strong!

 ***UPDATE TO THIS POST BELOW!

The beauty of a woman must be seen from in her eyes, because that is the doorway to her heart, the place where love resides."
      - Audrey Hepburn

Hi everyone,

Well today was Lucianna's weekly follow-up appt to check the progress of her eye inflammation's response to the steroid drops.    I was hoping we'd hear that she could discontinue the use of the drops today, but that wasn't the case.  We've been trying to ween her off the drops and up until today, it had been going very well - but today's appt was not good news.  Her left eye is not improving as much as the doctors would like to see and they want to increase her dosage again in that eye and see her back on Friday for another check-up and an eye pressure test.  I am worried about the length of time that we've had to use the steroid eye drops since the risk of prolonged use is cataracts and glaucoma.  It's very scary and frustrating to think that our treatment options can cause the same outcome as the Uveitis - which is compromised vision.  I guess we're on a roller coaster ride again.  Boy, I hate roller coasters...the ups and downs are mentally exhausting.   That said, I will not allow this disease to compromise her eye sight.  It simply is NOT an option. 

Bella was in the doctors today and has Strep.   When it rains, it pours.  I think Daddy is ready to keel over from all the running around with doctors appts and two very whinny children. 

Send positive vibes this way.  I will keep the blog updated once her appt on Friday is over. 

Love,

Lucianna's Proud Mama
                                                     GOOD NEWS!!!

Friday, October 19th at 10:30am - Her appointment today went very well!  She has just a few "cells" in her left eye and the right eye still looks good.  We were able decrease her steroid dose again and don't have to go back for a week and half! WOW!  Next appt. 10/29.

More good news & a video!

 Watch my video and walk with me!

Dear family & friends,

Each week we anxiously await the results of Lucianna's eye appointment.  She will have weekly appointments until her eyes are free of inflammation - then she will go every 3 months to be sure that the Uveitis has not returned.  Each week we always wonder if her eyes are improving or if they have gone in the opposite direction.  The ophthalmologist has explained that nothing is a guarantee, one week could be good, one bad.  We were fearful about this week in particular because on Wednesday, she complained of eye pain.

Well...we are so happy to report she has improved even more!!!  She has NO inflammation in her right eye and just a little in her LEFT.  Her drops dosage has changed to 3 times a day in the right eye and 4 times a day in the left.  What a huge relief!  Lucianna is one amazing little girl!  What a fighter!

We can't even tell you how exciting this is and it's a good time to officially invite all of you to join us or donate to our team for the Jingle Bell Run on December 8th from 8-10:15am!  You can make a donation in Lucianna's honor by clicking the Jingle Bell Run link to the right, or you can JOIN US!  Our team is called, Love Lucianna.  Our goal:  $3,000.  It is $30 per adult and $10 per child to register to walk with us!  You'll get a long sleeved shirt to wear on December 8th to show everyone that children should not be in pain!  Please watch our video story!

To link to YouTube for the video:  http://youtu.be/RbN5H5_c9Vk

Thank you all for the well wishes and continued support!

Love,

Lucianna's proud Mama

Another great week at the eye doctors!

Overalls on kids...enough said.

Hi everyone,

Just an update that Lucianna's weekly eye appointment went very well today. One eye is "almost inflammation free" and the other eye is "greatly improved". The ophthalmologist says that the addition of the Methotrexate is likely the reason her eyes have done so well in such a "short period", (I personally think a month is a long period). Nonetheless, we are very happy and hope that by our next appointment we can discontinue the drops and just go into a "monitor & watch" phase.

Just for reference: once we get her eyes "quiet", we have to continue to monitor her because the Uveitis can creep back at any time for unknown reasons. Sometimes it happens when you try to wean from MTX, sometimes, it's for no reason at all. She will only be out of the woods for good when she is over the age of 16 - so we take baby steps and just be grateful for each good appointment! We are deeply thankful that her eyes have been responsive to steroid eye drugs - many kids eyes don't respond to the drops and they have to get an IV infusion of much stronger drugs. Her daddy and I feel a lot of relief and encouragement today! Hooray!

Thank you all for the cards, emails, prayers and well wishes...they are working!!!!

Our next appointment is next Friday, Oct. 12th.

Love,
Nicole

Carival rides bring smiling eyes...

Friends & Family-

In an effort to remind everyone that in spite of these two nasty diseases that life does go on, we are posting some pictures of fun we had this past weekend.  Lucianna's physical limitations and rigorous medicine schedule are tough to work around in order to go out for the day, but we have fallen into our "new normal" and have learned how to make it work.

This is her second week on Methotrexate and she did great.  The relief from this drug could take up to 6 weeks to witness.   She wasn't grumpy on Saturday at all.  However, Bella decided to fill that 'academy award winning role'.  Argggg.  Can't we all just get along?

So this past weekend the girls visited their Grandma and Papa, (my parents), and we spent Saturday at a fun carnival/festival.  I mean seriously..toothless, country boys, herding our children onto a metal car that goes around in circles for 45 seconds...what's more fun than that?!?! 

Enjoy the photo's!
Love,
Lucianna's Proud Mommy

This picture speaks volumes to the resiliency of a child...

Update- Eye Dr appt moved to Friday, 9/28

FRIDAY, SEPTEMBER 28TH UPDATE:  The ophthalmologist has confirmed that her eyes are improving!  She is now listed as having "moderate" Uveitis, no longer "severe" - I can't wait to hear that it's, "mild".  (We are so exicted.)  So she is still responding to the drops, which is great news! Her dosage has schedule changed as well - she moves from hourly drops in each eye, to 2 drops, each eye, every 2 hours.  HOORAY!  We are very encouraged that she is continuing to improve! 

Thursday, September 27, 2012:

Dear Family & Friends-

Our eye doctors office called today to express their concern about us waiting until October 4th for our next appt. (We were waiting that long because there were no other appointments available.)  The main doctor in the practice feels it's too long to wait; our current doctor is out of the country. Well, we found out that indeed they do have open appointments, but we would just have to go to their other office further from our home - which we are willing to do.  So they requested we come in tomorrow, Friday, September 28 at 11:15am.  Daddy is taking her to the appointment and I will be at work biting my nails off.

Here is what I hope to hear:

• She is responding very well to the drops.
• She has no residual eye damage. 
• Her Uveitis is calming down and getting better.
• We can discontinue drops at "such time" or decrease the frequency.

I will post an update within this blogpost as soon as I know something.

My fingers are crossed...

Love, 

Lucianna's proud Mama

Oral Methotrexate Administration - Step by Step Pictures and Video (for other parents)

**Video's do not come through on the email alerts, you need to go to the website to view them.

Fellow JRA/Uveitis parents-

**I am not a doctor or a nurse, just a parent trying to share information.  Before administering any drug to anyone, you should consult with your physician.

Administering this drug was not self explanatory since there was no documentation from the pharmacy to explain to a parent how to do it.  I have personally never worked with syringes, needles, etc.  I want to share, frame by frame how to do this in case any of you need a little help like I did.  We chose, after consulting on a message board with some other parents to administer the drug at night on a Friday.  That way, if there is any side effects or fatigue, she is home with us to monitor her.  I also chose to give it right before bed so that if she suffers nausea, she sleeps through much of it.  (I hope.)

To administer Methotrexate, [MTX], orally, (which means you will REMOVE THE NEEDLE prior to squirting it into your child's mouth):

1. Your RX should include 3 parts:  MTX vial, alcohol swabs and needles with syringes attached. From what I understand, there are two types of MTX, with and without preservatives.  Ours is with a preservative so that we can get the maximum dosage from the bottle with no waste.  The other kind does not have a preservative in it, therefore after the first dose, the rest is discarded.  (Discuss with your own doctor though.)

 2.  SHAKE BOTTLE WELL.  After carefully removing the orange cap from the vial, wipe the top of the vial lid off with the alcohol swab.  This will ensure it's sterile.

3.  Remove the needle/syringe from the sealed package.  There is a cap on the end, remove the cap to expose the needle.  (Blech...I really hate needles.)

4.  Insert the needle directly into the "bull's eye" of the vial lid.  

5.  Turn the bottle upside down carefully balancing the needle & the bottle in one hand, while the other hand is pulling down on the plunger to fill the syringe. (Notice the iced coffee in the background...Mama plans to be up late into the night to monitor her and make sure she has zero side effects.  In fact, I plan to sleep in her room. Call me a worry wart!)

 

 6.  Make sure you don't have any air bubbles or gaps, so that you are certain that you have the exact dose required by your doctor.  For our daughter, the dose is .3 mls once a week.

7.   Replace the orange cap on the vial and put the remaining MTX back in the fridge - keep it in the original box so that it's not exposed to the light every time the fridge is opened.  Keep the syringe out on your counter and allow it to achieve room temperature which takes approximately, 60 to 90 minutes - this was our doctor's recommendation.

8.   REMOVE THE NEEDLE FROM THE SYRINGE - (you just twist it off) - I used a napkin and the needle came right off, leaving just a medicine filled syringe.  Keep it pointing up so you don't lose any!

9.   Our doctor recommended that we give our daughter no fluids 10 minutes before or 10 minutes after because the enzyme's could cause the MTX to begin to break down.  

10.  Our doctor advised that we squirt the medicine into her cheek, NOT in the back of the mouth because that feeling would cause her to gag/choke. **We are told it is tasteless...I am not sure that Lucianna agrees with that - but she did great. 

HERE IS OUR FIRST EVER MTX ORAL DOSE & OUR LITTLE TROOPER!
                     

 

Below is a picture of the empty syringe, the needle after it was removed, and our little munchkin at 9 months old.  Little did we know that just over 2 years later, we would be battling this disease.  She is strong though, and we are so proud of her.

We have read online from other parents that say hydration is very important on this drug - so lots of water from here on out!

Love,
Lucianna's Proud Mama

BELOW THIS LINE, I WILL UPDATE THIS BLOG POST 

IF WE RECOGNIZE ANY SIDE EFFECTS IN THE NEXT FEW DAYS.

STAY TUNED!

-----------------------------------------------------------------------------
Sunday, September 23rd:  - So far so good...
    As you read, MTX is administered on Friday nights in hopes that if she feels any nausea, she would perhaps sleep through it.  I monitored her throughout the night (until about 3am).  She had some fairly interrupted sleep (a lot of tossing and turning) but overall did well.  The next day however....she was VERY GRUMPY.  That said, her grandparents were here from NY and I think some of it was just the change in her daily norm but I also think some of it was drug/sleep related.  Otherwise, she did great and I am so thankful that "week 1" went so well.  **A special thanks to my in-laws who were so helpful in coming to visit this weekend.  My MIL cooked, cleaned, helped with the girls, brought food, helped with laundry...my FIL, played with the kids, took out trash, helped around the house and both are just the most amazing extra set of parents that I could ever hope for.  I don't know if they truly know how much it meant to me to have them spend the weekend and help so much. (Lucianna's daddy worked this weekend.)  I have always felt so lucky to have them as in-laws.  They are living proof that "family is always there for you". 
     If Lucianna has any other side effects or changes, I will post them within this blogpost for anyone reading who is worried about side effects for their child.  Whatever you do, don't read the accompanying documentation for the MTX.  It will terrify you.  Just leave it in the box and know the major and minor side effects in advance.
     Have a great week...next dose is Friday night. 

Float like a butterfly - sting like a bee!

THE WILMER EYE INSTITUTE AT JOHNS HOPKINS HOSPITAL:

Dear friends and family,

A short update on Lucianna's Uveitis progress.  Her normal pediatric ophthalmologist is on vacation this week, so we used this opportunity to get her an appointment with a Uveitis specialist at the Wilmer Eye Institute, (which is next door to Johns Hopkins Hospital), in Baltimore, MD.  After a grueling afternoon of waiting, waiting and more waiting, (her Daddy took her), we learned nothing new about her condition.  The doctor today just reiterated what we already knew:  her Uveitis is severe and we need to continue on hourly eye drop treatments and nightly dilation drops until further notice.  He agreed that we are on the right path with our current ophthalmologist, Dr. P., and for us to continue seeing her since she was much closer to our home. Daddy shared that Dr. P.  has equipment that is better suited for kids, newer and an appointment to see her certainly doesn't take a half day like our Hopkins visits normally do - so we are sticking with her for now. (She's pretty great by the way - another bonus.)  We are glad we took the time to go to TWEI though.  We never want to look back on this time 5 years from now and think that we should have gotten a second opinion.  Now we know that we are doing exactly what we need to be doing.

Currently, her treatment course is hourly steriod eye drops, one drop nightly that dilates the eyes, Naproxen - 3 times a day and Zantac - twice a day.  This Friday, (or Saturday), we will introduce Methotrexate.    Lucianna is the strongest kid I know.  I do not say that as her parent, but as an adult who has had a great deal of exposure to kids of all ages throughout my life - Lucianna is my Mohammad Ali.  She is a fighting machine.  She has the fiestiness of her Mama and the determination of her Daddy.  She amazes me everyday.

I learned some disheartening information about the other 299,999 children who suffer from this JRA, there are 10 states that DO NOT have a pediatric rheumatologist at all.  

Today, I am grateful that we live in an area where access to a pediatric rheumatologist is not an issue for us.  I can't even imagine the hardship for families that have to fly to their appointments or drive very long distances just to see a doctor.  See the chart below to fully understand the shortage.  (Note to self: "encourage up-and-coming college students to study pediatric rheumatology!!!)

Purple - 0 , Dark Green - 1, Light Green - 2, Orange - 3, White - 4 or more.

Ending on some of Mohammad Ali's great quotes:

"When you are as great as I am, it is hard to be humble."

"I'm so fast that last night I turned off the light switch in my hotel room and was in bed before the room was dark."

"It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe."
 

“If my mind can conceive it, and my heart can believe it - then I can achieve it.” 

Love,

Lucianna's proud Mama

Fast Walkin' - caught on video!

She always has a smile...or she sticks out her tongue.

--------Video's Attached, you may only be able to see it on the blog site though.------

Dear family and friends,

We have had to share bad news to over the last few months...I want to reserve this blog entry for something fun, uplifting and encouraging!

Despite the Uveitis diagnosis last Tuesday, this kid has been AMAZING!  She takes her hourly eye drops like a pro and never complains.   She stops what's she's doing and doesn't even give us a peep! We have weaned her off getting an hourly jelly bean with her drops and now she only gets a candy treat at night - Nonna....send more pez refills!!!  Anyway, the point of this blog entry is that Lucianna's once stiff, painful legs that had her on the couch for most of the month of July, and some of August, has been replaced with very capable "fast walker"...she's really showing off here (and I love it).

Her Rheumatologist did say the Uveitis would be our primary concern and the arthritis should get less and less bothersome. I wonder if this is exactly he means or this is a miracle coincidence?  *Her rheumatologist says that her long term issue would be the Uveitis and that we would see an increase in her mobility.  It basically means the illness has taken a different course.  I still like seeing her be able to dance, run and play.

Whatever the case may be, this weekend we were met by my dear friends Carrie, Skylar and Diana who brought us up casserole dishes galore for us to freeze and use on those tougher weeks.   Everything from french toast breakfast casseroles to dinner casseroles/lasgana's, Paula Deen soups, you name it.    They spent the night, helped me out...made me laugh...they were wonderful.  I can't thank them enough.

So let's end on all the smiles we had over the weekend:

Love, Lucianna

Her follow up eye appt was today...



This is one of my favorite pictures of her taken last Christmas...

All-

Let me start with the good news:  Her eyes are responding to the steroid drops, (there are kids with Uveitis who simply do not respond to any therapies/meds). This is the first big hurdle - and incredibly great news.   That said, she is NOT, by any stretch, "recovered" or out of the woods. 

The not-so-great news:  She has a severe case of Uveitis, which is shocking considering she was just checked two months ago and wasn't supposed to go back for a re-check until late October.  Thank goodness she had some symptoms.  Uveitis is typically a silent, symptom-free and painless disease.  You don't always know about it until it's too late.  Severe cases are more difficult to get under control and have more serious implications when it comes to vision complications.  Therefore, she will be undergoing treatment for the next SEVERAL months.  That's right, several months.  Currently, she needs hourly drops during her awake times and a nightly drop, which she hates, because it burns.  This disease is not convenient by any means.  To have to stop everything you are doing, every hour, is quite annoying....but necessary.  The drops are milky white, not a pretty thing to see coming from her eyes, but Lucianna handles it like a trooper!  Her teachers at her school rave at how amazing she is at taking the drops.  Her teachers have been amazing at dealing with this rigorous medicine schedule.  We are so lucky to have them.

The eye drops are a steroid - steroid drops cannot be given long-term because they can cause cataracts and glaucoma.  Yes, you read that right....we have to give her a medicine to keep her from eye damage and vision loss that could cause her -eye damage and vision loss.  Makes no sense, but it's our only option and we have to treat her and hope that she does well with the steroid.  Long term:  she will have to have routine eye appointments for the rest of her life to make sure this condition stays in check.  This condition doesn't just go away, (I wish it were that simple).

To end on good news:  her ophthalmologist does not think she has suffered any damage in these two short months - so we just need to focus on getting her better.  I was hoping it wouldn't take so long to treat her.  "Several months" is a lot of waiting, hoping and anxiety.  I am learning that I need to lower my expectations and just focus on the day-to-day of getting her well.   Anyone who knows me, knows that I don't do anything day-to-day...I am a planner and I need to know what's going to happen.  Unfortunately, with JRA and Uveitis, projecting her outcome is impossible.  There are too many variables involved and every child is different - so I am going to learn "patience" in ways I never knew before.  Sigh.  Next Friday, we move to Methotrexate - and my hope is that she does well with it.

Also, she is also doing great from a walking stand point.  She is getting around much more independently.  She looks like she has wooden legs, but we are hoping that just continues to walk better and better.  Lately she has been "fast walking", which is so cute and enjoyable to see!

She is due back to the eye doctor on Thursday, September 20th, and as long as she keeps responding well, we will likely go every week until further notice.

Matt and I have reached out to her rheumatologist about teaming with the experts at the Wilmer Eye Institute at Johns Hopkins. 

Keep the well wishes coming and thank you for keeping up with her condition.  I will update you when we have news to share.

Love,
Lucianna's Proud Mama

Uveitis, Pauciarticular JRA diagnosis and next steps...

Saturday, September 1st.

EYE FOLLOW UP APPT IS FRIDAY,

SEPTEMBER 14TH AT 1:30PM ET. 

STAY TUNED FOR AN UPDATE!

Friends and family,

I have noticed some changes in Lucianna's eyes over the past few days, she has had redness and just a cloudiness about them that didn't seem quite right. Knowing that Uveitis,{"U-Vee-I-TIS"}, a condition associated with JRA, whereby the inflammation attacks the eyes is a very real concern, I decided to get her an appt right away. Her Dad took her this morning. She has Uveitis in both eyes. The news has hit us like a freight train and we are currently trying to process what this means for us and her. Learn more: How Juvenile Arthritis Affects the Eyes?

I don't think I ever allowed myself to believe that she would get Uveitis, although I tried to keep it in the back of mind. Today, all that changed.

What we know so far:
The eye medication should get her inflammation under control. That said, the drops used to treat this condition are incredibly strong and do not come without their own set of side effects. There is just nothing okay about this eye disease and I can't sugar coat the serious nature of it.

The pediatric ophthalmologist has prescribed two types of eye drops, one that must be administered every hour, yes, every hour....until Friday. The other drop will be given every night before bed and we are told that particular drop will burn. I have no clue how I am going to get these drops in her eyes without her Dad's help on the nights that he works. It will be a learning experience that I will couple with M&M's & jelly beans to aid in my success. Luckily, Dad has taken off work tonight so that we can regroup, figure out what this means and just be together as a family. Today has been very hard emotionally for us.

So now she is officially diagnosed -(this diagnosis could change if she develops any other joint problems between now and December), she has Pauciarticular Juvenile Rheumatoid/Idiopathic Arthritis. (JIA/JRA acronyms are basically one in the same.) What does that mean? Her biggest burden will be her eyes and keeping them well. The arthritis will be her secondary problem and we may see it become less and less bothersome - however, her eyes will need more and more attention and careful monitoring.

Lucianna will go back to the eye doctor on Friday for a follow up to see how she is responding to the drops. If her eyes aren't under control by Friday, they will take the next steps in treatment and monitor her all next week. (This means several visits to the eye Dr's, possibly daily visits through next week, until it's under control.)

That brings us to Methotrexate, (MTX). JRA is a vicious disease that can wreak havoc on her joints causing a great deal of pain and deformity if left untreated. MTX is a powerful drug and comes with its share of side effects that would make any parent cringe to have to make this decision to put their child on it. Bottom line, the JRA needs stopped...the MTX is capable of doing that. We will begin this drug next week. It is considered a "2nd line of defense", (the Naproxen was the 1st line of defense). This drug is a "DMARD", disease modifying antirheumatic drug. It is described as a drug that knocks JRA over the head, over and over with a baseball bat until the JRA finally falls down to the ground.  This DOES NOT mean it will never come back again.  MTX will treat her arthritis and help her eyes. The benefits of MTX do outweigh the burdens - as scary of a drug as it is. Most kids have great success on it. We hope she does well with it and tolerates the "oral form" well so that we don't have to inject it. You can read about it here: Methotrexate for treatment of JRA. Normally we would have started the MTX today but she needed caught up on one vacinne (the MMR), and should get a flu shot before starting it. She was at the pediatrician's office this afternoon getting both those shots to prepare her for the MTX which can be started one week after the immunization. (Poor kid.) Once we start MTX, she will likely be on it for 6 months to a year. We also need to keep her relatively healthy so that her already compromised immune system can fight without anything else bringing her down. (Luckily she only has one other little girl in her class at school so not a ton of sickness exposure.) --small blessings--

So that's where we are. I am still in the "why us" phase but in day or so, I will get my game face on and keep up this fight. I will try to educate myself on Uveitis, MTX and Pauciarticular JRA. We will continue to do whatever means necessary to aid in Lucianna's comfort. And....we will not forget that Bella, our healthy child, needs love and attention too. Thank you for all your support and well wishes.

I will post another update as soon as I have something new to share.

Love,
Lucianna's Proud Mama



Appt was yesterday, our next steps...



First day of school with my big sister!



Hi everyone,

First of all - let's talk about how Lucianna is doing? She has been showing some signs of improvement but the pattern is something like this:

3 good days of walking, [albeit hobbled], but walking. She hasn't been able to climb stairs or step up on stools, but has been very motivated to move and is doing well at it.

...then a day or two of refusal to walk - and pain/discomfort when we try to push her

...Repeat

In the last 2-3 weeks, we have seen more days of hobbled walking than not walking at all, which is great! July was our minimal walking month - August has been much better. We have been very encouraged by her sheer will to walk and the fact that she has been doing it more and more. She just completed her second week in preschool. She has done well in school and I often get reports from Mrs. D that she's walking well or getting around well. Mrs. D has noticed that early morning, she doesn't walk hardly at all, but right about 11am, she's does a lot better. (That makes sense since her morning meds kick in about that time.) I have had the pleasure of receiving picturemail to my phone of Lucianna really enjoying school. A definite perk to having such a wonderful teacher - getting this kind of reassurance while at work is priceless. We do find that when she really wants to do something, like play with a friend, get a toy, etc., she fights through the pain and walks when she needs too. Her doctor says to let her dictate her walking.   Her sleep however, is usually very interupted with discomfort....(and so is ours because of it).

So present day: she had her follow up appointment with her rheumatologist at Hopkins yesterday. Her doctor said that her latest blood work taken August 22nd, shows "significant", but not "off the charts", inflammation in the blood. Upon his examination, he found that she has fluid/inflammation on her left wrist, left knee and left ankle.

We were a little caught off guard because he started out the appointment talking about how her xrays were normal and he seemed to want to tell us how great she's doing, then he quickly changed his tune to tell us that he wants to take the next step in her treatment plan. We were not expecting this or prepared for it. So what he proposed is increasing her Naproxen once more to the maximum dose, {6 ml's in the morning and evening, and 5 ml's at lunch, basically, an increase of 2 more ml's - for other parents reading, she is 42lbs.}. Her father and I don't see how 2 ml's is going to make that much of a difference, but we really hope it's a recipe for success.

Her doctor wants to monitor her for the next 2-3 weeks. As far as what kind of improvement he wants to see, he wants to see her walking normally, having no discomfort/pain - pretty much like she was before getting sick. If she makes "a decent improvement" but is not fully back to normal, he said we can continue with the increased dose of Naproxen and monitor her a little longer. If she's still having these up and down days, pain, limping, limited mobility, etc., he has recommended for us to move her to a second line drug: Methotrexate ["MTX"]. WebMD's short summary on Methotrexate (for JIA/JRA treatment). As you can read, there are definite pro's and con's to the drug - as a parent, you focus more on the cons since you want to protect your child from all the potential side effects. We want to clearly educate ourselves so that this decision is made with as much confidence as one can have in this situation. The alternative to not using MTX and leaving her on the current plan is that with the fluid/swelling and inflammation, her joints are getting damaged. Having a permanent limp or one leg longer than the other, is a very real concern. So we have to weigh the risks and be open to this option. We especially feel that her pain needs stomped and her mobility returned. It's as simple as that.

Her doctor also said we should monitor her ups and downs and see if we can find a coorrelaton to the barometric pressure. I am going to do this to see if there's any relationship there.

So is it JRA/JIA or not? Yes, it is, but our doctor still says, let's treat the problem and not get caught up with labeling her since there is always a chance she has a miraculous recovery and it never comes back, (aka: mystery arthritis). What subgroup of the illness does she have, pauciarticular or polyarticular? (Pauci means less than 4 joints are affected and Poly means, 5 or more are affected....each subgroup has its own characteristics.) We don't know which one she falls in, and her doctor says that it doesn't matter that much. Pauci-kids usually have an increased risk of eye disease, but he says, he's seen eye disease in Poly-kids too. I also read that kids with Poly, have a harder time getting into and staying into remission. Right now I have counted 5 affected joints...so she's right on the cusp and as her doctor admitted, "could I have missed a joint in one of my exams, sure. could I have counted a joint that doesn't truly have inflammation, sure." So it don't madda.

So...the next 2-3 weeks are pretty important. He told us the side effects of the Methotrexate are rare at this low dose, and typically we would see results occur in about one month's time. If the Methotrexate does get her well again, studies have shown that removing it prematurely typically results in a recurrence of the symptoms....so if she responds to it, he'll keep her on it for 6 months, along with the Naproxen and try weaning her slowly. Right now, she would take it orally. If she has vomiting, etc., we would have to bypass the GI track and move to a once a week injectable form of the drug. Don't even get me started on how I will be able to give my child a shot. I am just not even going to go there right now. Sigh.

So that's the update. Neither of us were expecting him to suggest MTX since she's been walking more. We are currently trying to educate ourselves on MTX and learn as much as possible in case we have to go that route. Our hope though, (as it has been for months now), is that the Naproxen starts knocking out the inflammation and getting her back to normal.

I will keep you all posted as we move through the next few weeks. As always, your well wishes, prayers and kind thoughts are deeply appreciated.

Love,
Lucianna's Proud Mommy