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