Another reason to be "thankful"!

Happy Thanksgiving to ME!

Dear Friends and family,

Thanksgiving is exactly one week from today and we have a lot to be thankful for in our house!  Yesterday, Lucianna had her 3 month check up at Wilmer Eye Institute at Johns Hopkins Hospital.  We are pleased to report that once again, she has had an improvement in her stubborn left eye.   

Lucianna is all smiles on the long and 'bowring", 90 minute ride there because of a special goodie bag she received.  A classmate's mom, and family friend, Sarah, gave Lucianna a thoughtful surprise of her favorite things, my little pony stuff. It saved me!  I was really touched by this gesture and clearly Lucianna was beaming.  (Thank you Sarah!)

So we have our appointments down to a science now.  The underground parking is never very easy, but I snapped this shot as we walked out of the garage.  How sweet is she clinging to her Daddy's leg?  We are usually running to the elevator because traffic and construction is never predictable and we are always late!

We waited two hours to see the doctor.  Yes, two hours.  This is the usual wait.  One time we had to wait 3 hours, a pretty unrealistic wait for a 4 year old.  We saw both a newbie doctor and then the associate professor that we always see.   Both doctors indicated that Lucianna still has some inflammation cells in her left eye (considered "trace") but that she has slightly improved since the last visit.  That's all we needed to hear!  Our goal is to get to no cells, but at this level she is not suffering eye damage, thankfully.  She is not considered to be in a "medically induced remission" until her eyes are totally clear - so that's the goal.  Unfortunately, her Uveitis specialist told us that he is taking a job in Philly, so we will have to see someone new.  (He's been with Hopkins 22 years.) The new doctor comes highly recommended by him.  I just fear a longer wait now that all his patients will transition to her.  The good thing is though, Lucianna is painfully shy around new people, especially men.  Maybe a female doctor will minimize that.  So we are continuing her on the Methotrexate at .7 mls (along with Folic Acid and Meriva Cucumin),  and return in February for our follow up.  I am hoping in February we get the news we are anxiously waiting for:  "Her eyes are all clear."  Until then, we are very grateful and happy that she headed in that direction!

Lucianna's next check up is in January with her Rheumatologist also at Johns Hopkins.  I will update you again after that appointment.

Wishing all of you the most wonderful holiday season!

Love,
Lucianna's Mama

MERRY CHRISTMAS AND HAPPY NEW YEAR!

There were never such devoted sisters...

A long awaited improvement!

She is such a good patient.

Dear Friends and family,

Last week we had our 2 month follow up with Lucianna's Uveitis specialist.  At our last appointment we were instructed to increase her chemo drug, Methotrexate, to .7 mls, discontinue drops and see how her eyes respond.  In addition to the drug increase, we added an herb supplement that is talked about in the Uveitis community called, Curcumin (aka Tumeric).  It is the main component in the Indian spice, Curry and believed to have anti-inflammatory, anti-oxidant and even anti-cancer properties.  We have found a study from NIH back from 1999 that patients with Uveitis had a significant response to it so with the approval of our doctor we are using it for Lucianna.  Curcumin along, (meaning sprinkled in your food by buying it from the store) can have absorption issues - it isn't known how much is absorbed into the body, etc.  A company called Meriva claims to have found a way to manufacture it so that the body absorbs more effectively.  It is available on Amazon for about $30.  Since our last appt, we have been giving 1/3 of a capsule daily to Lucianna.  (We just mix it into applesauce.)  

I don't know if it's the Curcumin, the increase in the Methotrexate or both but Lucianna's left eye went from between mild/moderate inflammation to TRACE!  (The right eye has been quiet for a few months.)  "Trace", (aka, "Faint"), is the next classification right below, "None".  Were we hoping for none, but trace works too.  Any improvement over this long battle is a success!  As a reminder, we have to get to "none".  Trace is not "good enough", but we're incredibly happy for the improvement! So we're sticking to the Meriva Curcumin and staying positive that our appt in November shows her eyes totally quiet!  We were also able to discontinue the twice daily Zantac and Naproxen.  I am so happy to not be pumping her with these drugs anymore.  

I can't believe the summer is now over. Where does the time go?  The girls started school last Thursday and they are both very excited!   Bella is in the 1st grade and Lucianna is in Jr. Kindergarten (preschool). Lately, Lucianna has been intermittently climbing in our bed.  I can't say that it bothers me, because I think it's cute, but it bothers Daddy.  Daddy is the recipient of her size 10 feet in his back as she lays horizontal in our bed. I get to see her sweet face on my pillow - what's better than that?!?!  I look at her as she sleeps and just hope that one day I can stop blogging about her health because she's healthy.  My only wish is that she survives these JRA years with her sight and joints in tact.  I am no fool to believe that once her eyes are completely quiet that she will never get the Uveitis back, but I will revel in the joy of each achievement and live for each day that things are "quiet".  

 "Pick the day. Enjoy it - to the hilt. The day as it comes. People as they come... The past, I think, has helped me appreciate the present - and I don't want to spoil any of it by fretting about the future."     -Audrey Hepburn

One of my favorite pictures of her - all babies look so cute
with a shirt pulled over their head!

Cardiology Update - Miss Bella

I never thought I would be using Lucianna's blog to update you on Bella who is typically the vision of health!

The update on Bella's abnormal EKG:   The very, very good news:  Bella doesn't not have either of the two life threatening conditions that were being considered in her possible diagnosis with the abnormal EKG taken at the ER last Thursday.  <big sigh of relief>.

That leaves us 3 other situations:  1. that it was just a fluke related to her being sick or 2. possibly some inflammation occurring near her heart but that's unlikely since these are caused by Rheumatic diseases that take a lot longer time to fester.  The last condition is called, Supraventricular Tachycardia .This condition occurs when there is an extra nerve in the heart that causes the electrical system to not work properly causing an irregular or fast beating heart and a fast pulse.  Because I didn't get a pulse rate (bad mommy), when the episode was happening, we can't fully be sure the problem is SVT.  SVT occurs or rears it's ugly head, at times of physical vulnerability...so when you are sick, drinking too much caffeine, too much mountain dew, or chocolate.  None of these fit Bella -except being sick.  These heart palpitations come on quickly and can resolve within a few minutes or a few hours.  They usually come back, but there is no clear answer on the timing...it could happen in a cluster or not for years - but again at a time when there is physical vulnerability.  SVT is typically not life threatening.  Treatment is a beta-blocker or surgery of the heart done with a catheter through the leg to remove the part of the heart causing the issues.

Her cardiologist has ordered an ECHO, and it is scheduled for Wednesday, 7/17.  After the ECHO, we can be assured that the only other thing to watch for is SVT.  Then we just watch and wait.  They want me to get a stethoscope and I need to practice taking heart rates and get comfortable and good at it.  If she has another episode of irregular heart palpitations,  I get the rate and if it's over 160, go directly to the ER.  At that time, we will be given a heart rate device that Bella wears all the time so that we get a good measurement with the next episode.  Then the activity is recorded and we know for sure what's going on.

So once we get an echocardiogram that looks normal, then we know the only other thing it COULD be is the SVT.  And SVT is something there is treatment for!

So we watch and wait and take it one day at time!

Much love,

Bella's Mom

"You can't stop the waves, but you can learn how to surf!"

July 4th

Abigail let me borrow this!

JUMP!

Dear friends and family,

I have gotten a few texts and emails asking about Lucianna's health and wanted to post something just to keep everyone updated.  Currently, we are in a waiting game to see if the latest increase in the Methotrexate drug has eliminated the inflammation that persists in her left eye.  We are also giving her Curcumin (Meriva brand), that we learned through a medical study has shown to assist those with Uveitis.  We don't know if it'll work, but her ophthalmologist says that it won't hurt.  I haven't heard her complain about her eyes and I haven't seen redness, (knock on wood).  The only eye issue she has is significant sensitivity to light.  When outside, she wears sunglasses everywhere she goes.  She is practically unable to open her eyes without sunglasses.  We have had a busy summer so far- lots of playdates/sleepovers, a visit to NY in May, June and July.  Swimming lessons,(the first round of two weeks worth) and our first "cousins vacation" to Sesame Place!  Lucianna's mobility is awesome.  She tires out when doing long or strenuous walks, (but so would I!) We still keep her stroller close at hand for those scenario's and so far she seems completely comfortable jumping in it when it's needed.

Do you mind sharing that?

At present, both girls are sick.  Bella has Strep Throat and Lucianna has a stomach virus.  It has been a very exciting couple of days for us!  I don't know a mom out there who handles projectile vomiting with ease.  Now about Bella: without going into a long story that could be a mute point, we are also taking some steps to double check a heart issue that Bella had this week.  Basically she had a rapid heartbeat that caused me enough concern that I took her to the ER.  Once there, she was much better but we chose to have an EKG anyway at the recommendation of the ER doctor (who was awesome).  The EKG came back abnormal and the ER doctor wants us to follow up with a pediatric cardiologist on Monday - our appt is 1:40pm.  At this point, I am not allowing myself to panic - there's just no time in the schedule to panic.  My gut tells me it's nothing and right now, that's going to have to suffice.  She is playing and acting like her usual self.  Lucianna however is green - lol...but tomorrow is another day and hopefully she'll be feeling back to her old self tomorrow!

Riding the swings with Mommy!

If I don't post anything next week or you don't get an email/text, consider Bella A-OK.  :)  As for Miss L, we will know August 21st if there has been an improvement in her eyes.

We hope all of you are enjoying your summer and staying cool!

Love,
Lucianna's Mom

"Daughters are like flowers, they fill the world with beauty,

and sometimes attract pests."  - author unknown

Nonna's flowers

"Life is not about how fast you run or how high you climb but how well you bounce." -Vivian Komori

"The greatest oak was once a little nut who held its ground." 

Dear friends and family-

So let me start with the bad news from today's appointment so that I may end on some positive notes. :) 

Eye Test

Lucianna still has inflammation cells in both the posterior and anterior parts of her left eye.  What does this mean?  It means that the inflammation is present in both the front and the back of the eye, and requires two different kinds of treatment.  The anterior, or front of her eye, requires a drug like steroid drops and the posterior part of the eye requires a systemic medication (like Methotrexate, her chemo drug she takes once a week) to control the inflammation.  When we were able to get her eyes quiet for a brief period at the end of February, she was weaned off the steroid drops.  (It was the best two weeks, health wise, we've had since June of 2012.)  When it was learned that her eyes relapsed once the drops were no longer being used, we were given some treatment options.  We opted to increase the Methotrexate dose once again -instead of using more steroid drops.  As a reminder, it is not advised that a child stay on these drops for long periods of time as they can cause other eye conditions that may result in damage/vision loss - so it's a balance between the Uveitis causing damage and the meds doing it also.  You have to weigh the risks with the doctor and do what you feel is best.  Today's findings have proved that the latest increase in the Methotrexate isn't controlling the inflammation enough.  Untreated inflammation will result in eye damage and profound vision loss.   So her doctor has recommended that we go back on the steroid drops for the left eye only three times a day and back on the nightly dilating drop.  (Lucianna is not a fan of the night time drops because they burn.)  I think I am going to have to invest in more jelly beans to help her through this!!  

Checking for inflammation cells.

In addition to the inflammation, Lucianna has "Band Kerathopathy".  Band Keratopathy is characterized by the appearance of a band across the central cornea, formed by the precipitation of calcium salts on the corneal surface. Currently she has a small calcium deposit on her left eye in the 9 o'clock position.  The doctor has explained that it is nothing to worry about at this point and they will monitor it.   Lastly, and the most disheartening news from our appointment is that Lucianna has a cloudiness in the lens of her left eye.  What does this mean?  It means that she could be developing cataracts.  Currently, she is okay and the doctor is not concerned yet, but she explained it to me this way - "Right now, you need not worry, but in the future, she could face cataract surgery at an early age." She reassured me that the surgery is very successful and that "back in the day", a child would to have to wear cataract glasses  that have a thick glass on one side and a normal glass on the other side of the glasses but now surgery is done instead.  I am still not sure that I have processed this information completely.  Sometimes I think doctors forget that as a parent, hearing that your child may need eye surgery to keep her vision in tact, is not easy to digest.  These Dr's have gone through this so many times with all their patients and it becomes robotic to them.  It is my hope that we don't have to go down this path but I would rather have it filed away in my brain than get a surprise on one of our visits.  So I have filed it under, "N" for "not gonna happen".

Time for some good news!  The pain in Lucianna's right eye is not due to an injury, inflammation or any eye pressure caused by the Uveitis.  Her right eye is quiet and doing well.  There really is no explanation for why she was complaining on Monday and Tuesday of her eye hurting but it is a blessing in disguise since we were able to catch some of the other problems and start an aggressive treatment plan again.  The pressure level in both her eyes is also normal.  Thank goodness! (Issues with the pressure can be a sign of Glaucoma, so this is an important symptom to monitor and always good to hear that it's "normal".)  Lastly, the best news is that her vision is still good and completely normal for a child her age.  Whewwweeee.

L&B

So today, we start drops three times a day, and another drop once nightly in the left eye and hopefully the next time I post a blog entry, her inflammation will have decreased! 

I can't tell you enough how grateful I am to have such a wonderful support system.  It always means so much to me when someone asks, "How is Lucianna?"  "What is the latest on her health?"  I find it therapeutic to talk about it especially knowing that she is cared about by so many.   Not only do I have such great immediate friends and family, I have connected with some awesome Moms from all over the world who deal with the same challenges of JRA and Uveitis.

Thanks for all the well wishes, prayers, good thoughts, good vibes, healthy eye dances and love...

-Lucianna's Proud Mama

Hoping it's nothing...

Dear friends and family,

After a nice long visit with family in Long Island, we are home but now headed back to the eye doctors.  Yesterday, and again today, Lucianna has complained that her right eye hurts.  The right eye is not the problematic eye but we can't ignore any complaints with her eyes, so off we go.   Any visual changes in her eyes, or complaints from her about pain requires an immediate visit to the ophthalmologist.  She was last seen in April and we were advised at that time to increase her Methotrexate that she takes orally once a week in hopes of getting the inflammation in the left eye under control.  We are hoping that the increased dose is enough to quiet the eyes and we were scheduled to come back June 12th to check her status.  However, tomorrow, instead of going to Baltimore, which is an all-day appointment, we are going to the ophthalmologist that's about 40 mins from home to have her examine Lucianna first.  If Dr. S happens to see a change from our last examine in April with Dr. D, we will likely be heading to Dr. D next.

Our appointment is at 9am and could take 3-4 hours so I will post again with the results.  Feel free to text me if you like.

As if we didn't have enough health issues on our hands:  Bella has had a heart murmur since birth. She was seen at Children's when she was 18 months old and had an EKG.  The cardiologist said she has a murmur that isn't serious and that she will eventually grow out of.  Well, she's nearly 6 years old and it's as strong as ever, most noticeable when she has chest congestion (which is now with her seasonal allergies), so her pediatrician wants her rechecked again.  That appointment is this Friday.  When it rains, it pours, but we are rolling with the bumps!

I am very grateful that I am not working right now so that I can devote 100% of my attention to these appointments and keeping my girls healthy!

Love,
Lucianna & Bella's Proud Mama

One stubborn left eye...

Sitting with Daddy in the Waiting Area

Dear friends and family,

What a great patient she is!  We promise her the moon!

Well today we did not get the news we hoped for which was, "the inflammation is gone/quiet/under control" in her eyes.  We were told that she still has "some" inflammation in the left eye.  On a scale of 1-4, with 4 being "severe", she is a 1.  We like 1's more than 2's, 3's and 4's, that's for sure.

So what does this mean?  It means she still has inflammation and we need to get it under control soon - period. Dr. "D", an expert in the field of Uveitis, says that young children who have Uveitis and get it under control fairly quickly, have a much better outcome long term.  He says she will eventually "grow out of it" but how we do right now at getting it quiet will determine if she gets there with or without any irreversible damage to her eyes.  So he has advised that we increase her Methotrexate dose once again. Currently, she takes it orally and tolerates it well, (thank goodness).  We are grateful that we don't have to give her this medicine intravenous - many of the kids with JRA/Uveitis only know shots.   Dr. D wants us back in 8 weeks, (June 12th), to see if the increased dose has done the trick.  Thanks to all of you who sent well wishes, crossed fingers and your support...keep it coming!  

This June 7th marks the one year anniversary that we have been dealing with this frustrating illness - Juvenile Rheumatoid Arthritis.  Maybe the anniversary will bring us peace and "quiet".  That would be a nice gift after a year of so much uncertainty and worry.  We are excited for the day we can post that Lucianna is free of inflammation.

Love,
Lucianna's proud Mama

I will be the best advocate on the planet.

I had no idea she was making this face.

Dear friends and family,

Unfortunately, Lucianna's two week follow up eye appointment proved disappointing.  Inflammation was found in both eyes after having been told she was all clear and the eyes were quiet.  She had only been off the steroid drops for two weeks.  It was the news that we didn't want to hear (again). 

So both her Rheumatologist and Ophthalmologist have recommend that her blood be tested for liver function and if all goes well, we will increase the Methotrexate (MTX) today.  She started out in September on .3 mls; in December we had to move to .4 mls.  The blood work came back okay so tonight she moved to .5 mls.  Lucianna calls tonight, "Gatorade Night" because she gets a sippy cup of it after her medicine.  Currently, she is still able to take the MTX orally...but given the path that we've been on, I am not going to be foolish enough to say that won't change too.  After 30 days of the increase in the MTX, we are scheduled to see a specialist at the Wilmer Eye Institute at Johns Hopkins for a follow up to see if the increase in the MTX has helped her eyes.  It definitely helped her joint pain - you'd never know she couldn't walk much of last summer.  I hope it does the same for her eyes at this increased dose. So what if it doesn't help? What's next?  These are the just some of the questions I asked myself.

Nothing prepares you to be a parent to a sick kid.  To go through the ups and downs and roll with all the sucker punches.  I often wonder,  "Why?"  Why is my child sick?  Why do we even have to worry about her eye sight being compromised or possibly losing her sight altogether?  I will never know the answers as to why this sweet, funny and strong little girl must endure such a diagnosis.  One thing is for sure....I will fight to the death to do anything and everything I can to get her well.

No child should ever suffer in any way or be a victim to a senseless illness. I for one, won't sit down, I won't stop reading, I won't stop educating myself on the medicines, the case studies, the research, the advances, period.  I will be the best advocate I can for her and my hope is that it all pays off one day soon.

Love,
Lucianna's fightin' Mama

 

March 1st - Challenge Day & Lucianna is a fighter-fighter brave and strong!

Please watch the below video to understand my post title! (You have to go to the blog site to view it, it does not show on email notifications.  www.lovelucianna.blogspot.com )

Why is this video significant?  Because Lucianna IS a "fighter-fighter"....and that personality trait has paid off today!  She had her eye appointment this morning and we are relieved and excited to say: 

HER EYES ARE OFFICIALLY QUIET!

NO MORE DROPS! 

We are 11 days shy of a full 6 months since learning she has Uveitis.  Today, her eyes are quiet and her ophthalmologist says she can discontinue drops. <insert angels singing from above>

She goes back in just two weeks to make sure that her eyes do well without the eye drop therapy.  So keep her in your thoughts over the coming weeks.  Her Uveitis is not cured, it's considered quiet.  We like quiet...it works for us. 



On a personal note, on Sunday, my great Aunt Jane passed away.  She was the closest thing I had to a grandparent since losing my own grandma in 1997, (which was her sister).  Jane was not in good health but I guess I was in denial that she would be here for many years to come.  She and I really bonded over the last 7 years.  I could talk to her about anything and she brought me so much positive energy despite being so ill. Why is that?  Why do the people who have the most to complain about refrain from it all together?  She was one of those people.  I would ask her how she was feeling and she would always say, "I'm alright, how are you?"  She wasn't alright.  She suffered from numerous health conditions including Cancer but somehow, she always made you feel like she was just fine.  I think she didn't want me to feel sorry for her or worry about her. That is the legacy she leaves behind to me...."stay positive, keep your mind full of inspiring thoughts and don't dwell on the things we can't change".  She was very different from her sister, (and my grandmother), Eunice.  My grandma was always complaining about something or another...and boy did she let you know about it. Even still, my grandmother managed to throw on her Reebok's and her warm-up suit and get out and do something!  Maybe that's what they had in common...nothing was going to keep them from enjoying life.  No words can express how much I will miss Aunt Jane.  I have a voicemail on my phone from back at Christmas that I saved - and I'm happy that I did; I can hear her sweet voice anytime I want. 



You know, Jane could barely see in the last few years.  She requested that phone numbers be written very large for her to see.  She often used a magnifying glass to read even the largest of print.  One day she called me to say how sorry she was that she hadn't called me in a while...then admitted that her magnifying glass had fallen behind her bed and she couldn't see my phone number without it.  Sigh.  Today, two nights after she has passed, we have the news we have been waiting for on Lucianna's eyes. Maybe this was Jane's last gift to me.

Boy am I fortunate to have known and been related to a very special women. 

 

Lucianna & Great, great Aunt Jane



Just for one day, on Friday, March 1st, the day I say goodbye to my Aunt Jane - I challenge ALL OF YOU to try not to complain that day.  Try not to complain about traffic, gum on your shoe, being tired, not feeling good...nothing.  Try it for one day as a favor to me.   It is true that I have been called "Debbie Downer" before. I am going to work on that, and starting Friday, as a tribute to my aunt, I will be more thankful....and complain less.

Love,

Lucianna's Proud Mama

Another good eye check up!

Dear friends and family,

We are pleased to share a quick update that Lucianna had a great check-up today at the eye doctors!  No signs of inflammation so they are weaning her down to 1 drop, each eye, twice a week.  Hooray!  A big difference from the hourly drops we experienced in the first 3 week weeks of this process!  We don't have to go back to the ophthalmologist for 3 weeks!  It's been a long 5 months to get her eyes under control.  I never imagined it'd take 5 months for this process, but we are very happy with today's news.

Love,

Lucianna's proud Mama!

Clowns, ballerina's and peace and "quiet"!



At our Rheumatology Appt - Johns Hopkins Hospital

Dear Friends and Family,

We are pleased to share the good news that we received at our last rheumatology appointment on January 10th.  Our almost four year old with her triplet baby dolls, is doing quite well!   This blog post will give you some insight into our Johns Hopkins visit and update you on her health.

It takes us about 90 mins to get to our appointment - which is actually great!  There is such a shortage of pediatric rheumatologists in this country, some people either drive for a whole day or more, or have to fly to the nearest pediatric rheumatologist.  We park in a parking garage that has to be a sick joke by the developers because we never know how to get out of the garage or how get to the street level. 

On this particular visit, we were surprised to see clowns!  Apparently, they come every Thursday.  I love that they dress up as doctors.  Doctors shouldn't be scary for kids...their comedy routine helps to make "Dr's" seem less intimidating. :-)

Lucianna is weighed in a special chair since most kids who are seen at Hopkins are very ill and many have severe physical limitations.  (On her first few appointments having a chair was vital since she couldn't stand on her own.) 

After her weight, they take her height, we learned that she's growing!  Our doctor says one big concern with JRA kids is the lack of vertical growth. She's doing marvelously, except that Mom and Dad are both short so she doesn't have a whole lot of help in the height department!

Finally, after some checking of her vitals, we are sent back to our room. Our doctor caught her doing something that made him very happy...CLIMBING!  As a reminder, most of the summer she was unable to walk or had very limited mobility.  Now, not only is she walking and running, but also climbing!    He was very pleased!

The next order of business was the doctor examining all her joints for fluid/swelling/inflammation....NONE.  ZILCH...ZERO...NADA!  She has one wrist that has some limited range of motion, but otherwise, she looks great!  He also read us the report from her lab work done that previous Monday...all clear.  No liver damage from the medicine's, blood work all checked out and her inflammation levels were on the high side of normal. 

So what does this all mean?  Well, it means that Methotrexate is doing exactly what it's supposed to be doing.  Quieting her JRA and quieting her eyes.  At her last eye appt, she was continuing to improve.  She is seen every 2 weeks and our hope is at the next appt, we can discontinue steroid drops.  Four months of constant eye drops...we are thrilled to see the light at the end of the tunnel and hope that her eyes remain quiet. 

Recently, she tried a ballet class with her sister.  She wasn't quite ready for it and decided she didn't want to go anymore.  Bella decided she didn't want to go either...but for that one day, it was great to see these two dressed up and having a ball!  Lucianna was running, yes, running all over the dance floor saying, "try to catch me!" 

So for now, we're waiting to hear that her eyes are quiet and want to continue to see the Methrotrexate doing it's job with no side effects.  We also are hopeful that we can continue to administer it orally rather than intravenously.  We see the rheumatologist again in 3 months unless she has a change in her health.

So,  we are grateful for peace and quiet!  Quieting eyes, quiet arthritis and loud and active Lucianna!  Life is good!

Love,

Lucianna's Mama

In like a lion, out like a lamb?

Snow Angels

Dear family and friends,

The girls had a wonderful Christmas. It was made extra special by being a white Christmas! Santa was very good to them, although, sometimes they really "test" Santa. <Grrr...> The girls were particularly sad that "Christmas is over" and did not like it when mommy had to take down the tree. We still listen to Christmas music though. Why not, it's kid-friendly and I never worry about anything bad being said!

That said, we've had a little bit of a rocky start to our new year. Lucianna had her routine eye appointment this morning. Unfortunately, it was discovered that her right eye has inflammation back. (I was sort of expecting to hear this since her eyes have shown some intermittent redness and cloudiness since her last appt.) Nonetheless, it was disappointing to hear. We knew that there is always a chance of a relapse with both the JRA and Uveitis. Doctors are unable to really tell a parent what to expect since both these illnesses manifest themselves differently in every child. However, doctors do prepare you by saying, "things can change at any time for any reason". We JRA families are desperate for a clear picture of what to expect as we struggle for remission and jump these hurdles.

We are now back on Pred Forte drops for the right eye, 4 times a day and back on the nightly dilating drops. The left eye is still on an every other day dose and is still "quiet".

Along with the Zantac and Naproxen that we administer three times a day, her Rheumatologist agrees with the ophthalmologists' recommendation that an increase in the Methotrexate will help her. So tomorrow night, we move from 0.3mls to 0.4mls. Now of course, Mommy is a bit nervous since more MTX can mean more chance for some side effects, but we will cross that bridge IF it comes. I am just going to keep a watchful eye over her and try to identify anything out of the ordinary. Our next Rheumatologist appt is Thursday, January 10th. The Rheumatologist called me today to tell us that he still wants to see her despite her change condition. (Before, he wanted to only see her when we got the eyes quiet.) So Lucianna will have some blood work either tomorrow or Monday, (that's loads of fun, but I make Daddy do it).  The blood work is to make sure that her liver and other tests all check out ok. We're hoping for good news.

As always, we're taking it one step at a time. A bumpy start to the new year, but maybe that means "out like a lamb"???

Wishing you all a wonderful, and HEALTHY new year!

Love,
Lucianna's Mommy