Where to begin.....Today is WORLD ARTHRITIS DAY! Wear BLUE

I have been journaling on paper...just not on Bri's blog. Sometimes I have felt overwhelmed with what's going on, and sometimes it's just a waiting game. Eye Dr appointments every 3-4 weeks and when she had no joint inflammation and her Uveitis was only showing a few cells with no inflammation either you just are praying that YES this is over, she can wean off her meds and get into remission right???? Hmmm well going through my journals I went back to when Bri was diagnosed with Uveitis-September 3, 2009! This day I will never ever forget, just like the day we found out our 16 month old had Arthritis!! Now Uveitis...really??? Ok-so another hurdle in life, let's go!! So since that day she has been on Prednisolone (steroid) eye drops ranging from every hour while she is awake all the way out to only 2-3 times a day! And now she is at the maximum amount of Methotrexate that she can be at. Through her eye exams though she has to identify the pictures the assistant puts up on the screen-which Bri finally started saying what they were on her appointment on 4/22/10 and oh how cute she is when she says "horsie, house, birdie" in this little squeaky voice haha! Before this she just looked at the picture and smiled, and looked at Eric and I...without saying a thing haha. So on her July 16th appointment her L eye had alot of cells and her R eye alot as well, but not as many as her L. Her left eye has seemed to always be the one that is worse.

August 6, 2010 Bri said all the pictures and did great, even with one eye at a time covered and the pictures very small we were soo excited! And again her eye Dr is so predictable after the slit machine eye exam you know if it's bad if he doesn't say much. So we were just biting our lips...staring at him while doing the slit lamp exam. Dr sat back and said her eyes look great, 1 or 2 cells in L and 1 or 2 in R is all! So now we go back to eye drops 4x a day for 3 weeks, then 3x a day for 3 weeks and at the 6th week another appointment. So again, we have a 6 week praying time of please please do something Prednisolone!!!!

Sept 17,2010-she did great again with all the pictures to identify! And here comes the eye exam.....now, we missed one week of Methotrexate shot because the vile broke and with our insurance we have to call in Bri's Methotrexate and it is sent to us-so when I called it would be 2 days until we would get the MTX so this meant we had to skip a week, and continue her normal shot next week! This wasn't good! But then again-you have to be hopeful right? Eyes could be better just from the drops right? Nope-her eye Dr said "moderate step backwards" is his exact words. And he said it isn't necessarily due to missing one shot, he said even with this missed shot, her eyes should be doing much better with the eye drops. So me being the emotional one burst into tears, Dr gave me a tissue, and I was devistated! Ok-be strong be tough...and I just held it all in from then on! Didn't want Bri upset, and I just have to get tougher!! So...I cried all night haha! I went onto other moms blogs out there who are dealing with JRA and Uveitis to see what they were doing, I researched the different drugs as much as one can do, and I also looked into Dr Foster again in Boston (wouldn't mind going to visit him seeing that I did live in Boston for 13 years-oh how I miss MA). I also found an amazing mom whose daughter is going through what Bri is going through and she goes to Dr Foster-lol-you know who you are-she traveled here to AZ and we kept in touch through emails. I am soo incredibly thankful for all the amazing families I have only met through emails, FB, Blogs, or arthritis.org. You all have been wonderful and what a great support system has been created for our children, and for ourselves. So through all these families we will now continue through the journey of JRA + Uveitis= MTX, Folic Acid, Prednisolone and now Remicade. Hoping to meet in person someday with all of you!

Oct 6, 2010 (Wed) After meeting with her Rheumy and alot of talking/researching we are going with the Remicade 4 hour infusion in Bri's Rheumy's office. Just knowing that she has been on Prednisolone for a year this is really the only option for Bri seeing that the eye drops (Prednisolone) have not been effective!! Bri also got her TB shot and we will go back on Friday after another eye Dr appointment to see those results and see the room where the infusions will be done:(

October 8, 2010 (Fri) Another eye Dr appt. So here goes another exam. We know that even if this does go well, we are going to have to start Remicade. So here goes the exam, and when the assistant covers Bri's left eye and she has to say what the pictures are she isn't really speaking up, she isn't saying what the picture is! But we thought it was ok because sometimes she doesn't like to say what they are! Then her Dr comes in and says "I want to check Bri for a cataract in her right eye!! HUH??? Eric and I were horrified! So he has Bri go through the slit lamp exam, then he puts a head piece thing on and exams her eyes with that, then he takes out a huge lens and looks through that! HUH??? WHAT??? No idea what all these different exams are, or for-didn't even ask...I think I was having a silent heart attack! This moment was the worst-to add to the list! He then said he was concerned because she wasn't able to identify the pictures correctly and he thought she could have a possible cataract!! Oh my gosh-then he said he wants to possibly see a retina specialist because her retina is inflamed!! And so again, we need to continue eye drops every hour and if that's too difficult every 2 hours.

So let me tell you about these eye drops!! Bri hasn't liked getting these lately...about the last 3 months! So sorry to say it but each 2-3 hour eye drop session is a major bribe for me. So she will get a piece of gum, or a little baby doll. We have had to hold her down like we have to for shots and blood work just for the eye drops now. It has truly become just impossible to give her these as often as we have to without bribes. And I don't really consider them bribes, like..."be nice and I'll give you a lollipop" bribe, but it's a bribe, "let mommy/daddy give you your eye drops and we'll let you watch two of your shows not one tonight" or "a little baby doll" from target $4.99 haha, or "a piece of gum" or "a new book" which she is hilarious with she'll chew it for a few minutes and spit it out, or "pick a spot in the house to have these awesome eye drops done" and she'll go in her brothers bed or she'll go on daddy's chair, or whatever! So don't go thinking we "bribe" her for everything! I know I've read articles on bribing...don't do it right?! Not for everything come on!! So anyway that is that-after a year of eye drops every day , every hour while awake or even every 3-4 hours or 3-4 times a day I could see why a 2 now 3 year old would be a little DONE with eye drops!! So I'm proud of her because now-she just loves to watch me give her babies an eye drop, then we give Bri her eye drops! And she gets a little something extra of our choice:)So cute! So after the eye Dr we went back to the Rheumy for the results of the TB test and her Rheumy's amazing assistant was there! She said there is 1 other little girl that is 4 years old in their office with Uveitis and only Uveitis (she doesn't have any Juvenile Arthritis at all) and she has had her 2nd set of infusion treatment with Remicade. So she is going to send Bri's Rheumy a note and the family to see if it's ok if the girls get their infusions done on the same day so they can have company. I guess the little girls mom and dad both stay for the 4 hours and it would be sooo nice for Bri to have a little buddy (me too:)) going through the same thing, especially when we go in for her first infusion-I can only imagine what that will be like. She hates hates getting her blood drawn, hates hates her MTX shot once a week and cries "daddy no daddy no please no" so we were thinking maybe with another little girl she might be a little more at ease?!?!?! Plus I haven't met anyone in AZ with a child with JRA, let alone Uveitis! Would be thrilled to meet a local family to connect with!! So now just waiting on a call from Rheumy who has to clear all this with our insurance co and then we will set a date for the first infusion treatment of Remicade!! I have been without a computer for about a week and haven't been able to look up retina swelling but now more research, more research, more reading:) Again, thank you everyone for reading Bri's blog, and thank you to all the families who I have met via internet

Sorry if this sounded like I was rambling on and on, but I haven't written in a while and wanted to get everyone caught up on Bri:)