There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families. - This is where our Special "Thank You" comes in ----- CRS (Childrens Rehab Services of Alabama), and their Drs & Nurses who give their time and talents to help the kids through "Arthritis Clinics", currently in Mobile AL. Without their help,... I don't know where we'd be today! We love & apprecite you ALL! You give us a little peace in a horrible time.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Wednesday, March 5, 2014

We'll it's been a LING time since last post, I know.... But we be had a lot going on!  Will try to detail and upload pics later..,. For now she is back at Lakeshore Foundation for warm water therapy... Very moody, had to stop the $15000. Remicade treatments because of no more assistance- started Humira (which burns, she screams " mommy no please, take it out it hurts!!!"  I can't stand much more!) eyes are in another flare since stopping Remicade!!!! So she's back on predforte steroid drops every hour-16 times a day... And dilating drops to keep her pupil wide open 24 hrs a day to prevent. Any scar tissue from forming etc..... She is a little nearsighted in one eye right now ...  She isn't very happy, seems so down each day... Back to therapy to Children's Lighthouse next week! One minute she's fine... The next she's off crying or screaming about something little.... She also started Aa new pill this week to help with inflammation and pain... First time taking pills and they're pretty big do u can imagine how that's going!!!  She had to have dental surgery at Children's Hosp (with lil brother)... Medicine/chemo methotrexate eating Way at teeth, do 4 back had to be pulled and spacers put in...  Wow... So much more, just no time!!!!!

Monday, June 10, 2013

OK, Finally an UPDATE! Sorry, so much has happened this year, - I will try to get back to Regular Posts, or you can check us out on FaceBook, I "try" to update often there also!

Determination!



To Read Update:

https://www.facebook.com/media/set/?set=a.4594453535534.1073741828.1118067843&type=1&l=405442e164

Bailey,..... Warm Water Swim Therapy has kept her moving pretty well! She LOVES to Swim with Ms Katie, doing Laps! She has learned SO much at Lakeshore with the Land Activities And the Pool Activities! She has even climbed the Rock Wall that she had been wanting to do for so long! The Entire Lakeshore Staff is Awesome and they have kept her Moving, so she doesn't get stiff! Her Auto Immune Disease (First Idiopathic, Auto Immune, Rheumatoid Arthritis, then Psoriatic, and Enthesis related-making her pain deep into the muscle & bone, and not really showing on the surface of the skin, told her Hips had fallen foward, knees & feet turning inward ... making her trip more often, or just not run, as fast as she could,...) And the dreaded UVEITIS (the auto Immune includes theses cells attacking her eyes, and trying to Blind Children!) Diagnosed at age 2 & on the Methotrexate (low dose Chemotherapy) shots at home each week, and the Remicade Biologic IV Meds (made with mouse proteins, and over her maxed doseage) given at Childrens Infusion Clinic, at week intervals from 2 weeks to 7-8 ---- (as the Opthamologist & Rheumatologist administer their meds & Eye Drops to chase these destructive cells away with these powerful meds-- and therefore knowing through checkups/eye exams, etc,.... When they are back each time & trying to find Bailey's "Maintenance Dose Week Period - How many weeks she can safely go between infusions to keep the cells from trying to destroy her eyes & body) Over the past 6 years,... the cells have attacked/came back at around 7-8 week periods of infusions,.... so this IS a trying time right now, as we are at this stage again & have had 2-3 good "Clear" eye checkups!!!! Thankful again for this,.... but not when other things pop up, like the swollen half ear, or the Hands - Eczema that came up,... and of course the Nephrology visits, and the Kidney Biopsy, as the Blood & Protein, etc,.... seem to reappear during her urine & bloodwork..... and we are not sure whether this is from the meds causing this or the disease itself, as it can effect internal organs as well..... There has been no conclusive results, Bailey, we're told, is "a Rare Case" & "Not TextBook",.... there is just not enough research to cover kids like Bailey. So, we take the good with the bad, for now, and Thank the Lord for watching over her and SO Thankful for All of the people & churches that are praying for her continually! Someone - IS GETTING THROUGH !!!!!!! Thank You to you ALL !
There are 100's of autoimmune diseases like this & Lupus, Systemic, etc that are under this "Umbrella" covering, --- they can Overlap each other & do make it hard to get a Definate Diagnosis & treatment plan - as each child responds differently to each medicine,..... some much better than others. The Problem is - that many of the kids like Bailey, "LOOK/SEEM" as if there is NO PROBLEMS at all! You cant see much from the outside, especially if you dont know what to look for,.... and WE cant see what is going on - on the inside of her Body, organs, inflamation, etc,..... So this disease is almost invisible & therefore sometimes makes it harder to deal with,... than the obvious diseases or disabilities that some have. Some children are even bullied or told that they are faking being exausted, or that they are lying about their body hurting and can't run, walk, stretch, etc..... anymore that day. Some even hurt and are upset (especially girls as they get older, because they cant Brush their hair as well, because of their hands, arms, shoulders, back, neck, etc.... getting stiff & sore) - As we have recently discovered with Bailey! (Thats another story! - But after fighting with her to brush her tangles out of her long hair - especially in the back,... it hit me,... that maybe she CAN'T!) Thats why she did get her recent Haircut & Donated it to "Locks of Love" for another child to have! She seems to have a better attitude allready this week (most of the time,....) so maybe this was one less thing for her to have to struggle with! Will try to update better and sooner as before, .... this has just been a busy & trying time this year!

https://www.facebook.com/media/set/?set=a.4594453535534.1073741828.1118067843&type=1&l=405442e164
LAKESHORE TIME (21 photos)

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VIDEO of BAILEY - giving ME, MY B12 Shot last week!!!!!!!   How could I say NO to her, after I have given HER, HER Methotrexate Shots, EVERY WEEK,.... for the past 6 YEARS ?!?!?  lol!

video
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"LOCKS of LOVE":    Here is a Short Clip of Bailey getting a Haircut ----- and Donating to "Locks of Love", for another child to have!   We've always been afraid to cut it, due to the fact that her Meds - COULD cause hair loss, and we have been waiting to see that day & Dreading it!!!!!  But the Lord has blessed her with LONG hair!!!!!  But recently it has gotten way to hard for her to reach back and comb it all, and became Very Tangled!!!!!   So after I realized, it Hurt her to reach back that far, that long, & she Couldn't really do it,.... and she Scream when I tried to go through it,...... We agreed she could get it cut if she wanted to,..... so two weeks after talking about it and Locks of Love,..... She did it!   It has seemed to help give her a lift in Spirit also!

video
 




 
 

Monday, January 14, 2013

First Treatment of 2013, Bailey has just turned 8! We are on our 6th year now,.... So ready to be Done!!!! But has enjoyed Lakeshore Therapy!


First Treatment of Jan, 2013.  Thank You to the Nice Nurses at the Infusion Center!


 Lakeshore Swim Therapy!
The warm water helps keep her moving!
The staff is Fun & have Creative ways to keep them Moving & Entertained!  Thank You Lakeshore Staff !!!!!! 

Monday, September 17, 2012

KIDNEY BIOPSY /UPDATE (text may push pics down page - scroll down)


Thanks for the Prayers Everyone!   I know I haven't updated since the Biopsy much... God dealing with me on some things again ..... But here is Update with Bailey : ... (Better Pack A Lunch...it's pretty scattered,....especially this late/early - 5AM ?!?!!! Uhh.......)


(Details about Bailey's Kidney Biopsy:.... lab/testings results over past couple of months....)

After her biopsy sent to 3 labs here,  then even to a specialist in Tennesse.,....There is Still - NO concrete explanation/diagnosis that is agreed upon... And told once again that She doesn't: "fit into" `- "the normal findings".., the box",... "the textbooks".... on diagnosis, treatment, tests etc.. She/this. is ...another.. "rare" thing that cant be completely explained... or doesnt make sence..., like some findings point to problems that usually arent seen... except in a 70-80 yr old person..(...????.. can't quote all of the "Could Be(s)", May Be(s), .Looks like it points to(s), etc...lol---so just bare with me!) .

One Dr. thought it looked "Systemic Lupus-Like"... but all Lupus Tests were negative...., So more confusion... And another Dr. thinks its still the Juvenile Psoriatic Arthritis and is a "side effect/result of" the Meds ... or... could be a totally "Different Kidney problem altogether, not related to Juv Arthritis..." we just dont have enough research.....and therefore have to wait on Biopsy results & the Pathologists Reports to give,.. Any clues & go from there. SO,..After her Remicade Treatment last week & the Nephrology follow up this past week here is the closest "Explanation"/"Information", we've gotten so far and the most current:

(**** FREE TIP : **** If you allready know, All about Remicade - and our Sometimes, Crazy Life.. save yourself -... and the next " HOUR " or so... of your time! - NOW - and Skip to the End !!! LOL!)

Remicade,...(for those who do not know is the IV meds she gets made from mouse protein.... And after a year or two on it... the body usually rejects it... Saying ... "hey you 're not Human protein... And so You don't belong in my body.. & therefore the body rejects it.... And Therefore,.... is NOT helping to "Supress (Slow Down) the Auto-Immune Disease (whatever "type" or Name) from Running Rampid all over the Body--- attacking healthy tissue, joints, organs, eyes, etc...(depending on the type) BUT - We are on year FIVE .......

And it looks like Bailey's Body may have finally built up immunity against the Remicade,...(we dont know if it was Recent,... this year,... or several yrs ago,...- We will probablly never know. Just now finding it because it had been Binding to other cells,.. then clumps,... and somehow eventually got Backed up/Stored in Kidney(s) and then Busted-leaked-pushed it way through,... the Kidney walls,... therefore inflamation & Blood count, Urine tests,.. Protein,... etc was found more. SO---- Means Remicade is probablly no longer working --- But One thought is Dr may Stay with some of it -- and Add Another Drug - Rituxan http://www.drugs.com/rituxan.html  (Dr said it is Very Strong,... and can be dangerous adding this.... Its another (super charged) drug to Suppress/Pull Down the Immune System STRONGLY....trying to kill/chase away the B cells that are overactive & and try to destoy Healthy tissue,...joints, etc... FASTER now.   SO - .... IF  we have to,... This would Pull her allready Supressed Immune System,... Further Down & would be way more succeptable to getting sick,.... and so on..... so we'll see if we start that..... ******

* Anyway - to back up (so you'll know what I'm talking about), *.... . : The cells have always come back,  (to attack) her eyes again. (Eye Dr had told us, years ago, that,... IF, or WHEN it comes back (in her eyes) .. it usually "Comes Back with a Vengance" - (Worse than before) ...as it has...many times. And so,.. we have to start all over again, & Have to "up" the Remicade dose, again--- and start back to every two week treatments for a while....WITH using the Steroid eye drops (started like 6 drops a day - last time was 16 a day....) and Dilating drops to keep her Pupil(s) Wide Open 24 hrs a day... prevent scar tissue from forming and not being able to open/close it, etc... But these are dangerous also - as they TO can CAUSE cataracts and glaucoma & she had all ready had a small cataract off to the side, at age 2, when first diagnosed with Juvenile Rheumatoid Arthritis. So she is on drops usually @ 6 weeks, taper down, then off those....And just treatments & shots... So Then if clear eye checks after those... We go 4 then 6 weeks etc... again -- * But year or two ago,..(all runs together now) she was suppossedly on the Max. of Remicade she could be for her size/age -- then ...Eyes Flarred Again.... so after @ a 4 week or more battle with the Medical Insurance Company & having them "Deny" Orencia over & over (another Medicine that Dr said had been shown in small study to help... some.. uveitis, ..... so worth a try,.. and even faxed in article/study showing some use....(all the while, this disease doing what it wanted,... while approval/decision was waiting to be made,... being "held up" - by the Insurance Company "Medical Review Board" ....) ....still on the Methotrexate, and started the prescription eye drops ASAP, - to atleast "start" to combat the cells, .. - while "waiting" for other meds... ) After all that & a few doses of the New Med,..... Eyes continued to flare --- WORSE!!!! So,... Dr said Back to the Remicade & UP the doseage. But,.... If it Had stopped working,... then why...? Best choice then was to Stay on the Med that had gotten rid of the cells before many times,... just UP it,... so it will work again......? Well... it did.

But With Drs having to UP the dosage with each past eye flare, to work, because it is known to be the Best for her Chronic Uveitis, which had been our biggest hurdle ... and it is used for other JIA problems... Each time over the past Five years,.. (after getting to a few "Clear" eye checkups (meaning NO cells floating/attacking the EYES - or "quiet" disease)...... the Drs try to "Wean" her OFF of the Remicade by stretching out the weeks....to get to every 6-8 week treatments.., then maybe 10-12 ??? (never seen so far) ,..Then hopefully... Eventually,..... (We were told,..Years Ago -,...) INTO - "Remission with Meds",.... then eventually Into "Remission OFF MEDS",...... meaning " OFF " Of the Biologic Medicine (Remicade),.... but still probablly another year or so ON the Methotrexate (Low dose Chemotherspy) & we have wanted her OFF of this Medicine (and ALL strong Meds) - for years!!! And for her to be able to Really "Experience" life... as a child SHOULD.... - "withOUT" Medicines, Shots, IV's, limitations, restrictions, taste bud changes, Sedated,.. then woke up, MRI's, Biopsy. so.many Dr appts, Therapy, etc..... She is 7, almost 8 & has been on these medicines, since age 2 (& 1/2...)... so,.. if you think about it (and you KNOW,.. I Constantly DO! lol) thats Way over Half of her little life so far! She doesn't even really KNOW, what her Body and Everyday Life....Feels like----- "Without medicines in her little body/tummy".

Understand - We ARE Very Thankful, and Greatful - to the Medicines/Treatments available & the Drs, Researchers, nurses, physical therapists, etc...(feels like I am at the Music Awards Ceremy and afraid I will skip someones name...so, bare with me if I do..lol!) - We KNOW these meds have helped MANY... But God has been "dealing with me again /showing me - well, "Trying",... to Show Me.... " some things lately (whether I like them or not!..) ...and I am realizing that they " DO" have these "Rare" "Side Effects" & "Risks", the black box warnings... and the "Small Chance" (- of causing Lymphoma Cancer.. etc,).. All of the "technical/medical-fine print things" they Have to warn you about,.. but Assure you it's not you..... And even to ( what starts,. as) the most common tpye of cases,..easy to treat & usually doesn't return type cases--- those "Small Chances" - ARE STILL THERE / HERE ... they DO exist & CAN really BE - And Making the Decision to Start.. and/or ..Continue using them is a Hard one,...for Parents (and the Doctors) . ----- With only having the Very " LIMITED " :Research, Data, Studies, Outcomes of Patients,..etc.that is currently "Provided" ,... to use as a  " GUIDE  " .  So.....We are Bound to.. "Sway Off Course" , a few times... - or get upset &  And  "Try To Make Our Own Map".. "when the first one didn't get us there like WE thought it should".    I KNOW I've made MANY Maps!!!!    And they all got stuck into bottles when they didn't work & are probablly all still floating out in the sea!

I "Realized",.. ..After ( WAY.. After,.. feeling likeI had been beat upside the head with a Huge Bunch of Bananas over & over again,- then "Dropped" upside down, into the. Crazy/Fast/Spinning/Uncontrollable-Thousands- of- thoughts- at- one- time, doesnt- ever STOP- Thinking - "HURRICANE" that is,..... my "Mind". ..) that uh,... We "STARTED" this "Journey" with a "Guide" / "Tour Guide" ---- Where did He go ?!?!

I "Believed" that He, ... could get us to where we wanted to be, the Fastest! And that He,... being the "Tour Guide",..and having Full Access to All of the "Information & Tools" (no matter how limited...), ...would make it Easy, ...for me to Follow Him.... And that since He - KNEW--- ALL of the "dangerous places" & "The Spots we Should Avoid"... - "along the way",.... H e was "Suppossed" to make our " tour/journey "  smooth .....

Well,.....after hitting several "Bumps" - in the Road, ... Some - PRETTY " BIG " BUMPS ---- (you know, ...the kind that" knock" you out of "alignment",,, lol!) ---- Well,.. I now confess........ I ,..........  " T H I N K" ... that I ,....MAY.. have,........uhhhh.... got a little, -----" fed-up",....... and ----"Acidentally",..... Well,... Uh....     "Tossed Him out of My Boat" -   .......   a few times !!!   (lol!)
        But,... it's OK!!!! - I eventually Drove back around & Picked Him Up!!!( lol) -----  Well... Actually,.....I   "ASKED"  Him to ........" Please - ... Get His Butt BACK IN MY BOAT,... "... and Thankfully He did!   
       (And its OK,--- those of you about to have a - "Heart Attack" ,...Calm Down -- Yes, This IS  "GOD"  -  I'm talking about and  "He"   IS   Laughing at this right now!  More like a Chuckle... (as a Father is stern,... but sometimes Has to just shake his head & laugh at the things his kids do,..." ( lol!)   He Knows we are NOT PERFECT!   Heck - HE gave me the ideas!!!
        Two of the Greatest things I Love & that Many Seek and Never Find,... (and some, like me, have found & lost again.....  Several times..)  Is:   Joy & Laughter come from Him,.... and when I learned enough to "know" this,... it changed our relationship!   He is, as well as many other things,... Loving,... Comforting,... Pretty Easy  to talk to,..... -  Heck,  what's to hide,.. .He Knows it ALL,... so it's not like you can hide anything from Him (lol) -- He allready knows it !!!  I think He has Stood up there & Laughed at some of the Crazy stuff I have done over the years!!! (lol!)    Yea,... even "He" - has a sence of Humor!      SO,....  Unless I "CRACK"------  Soon     (lol)...  You can "Believe" - He has laughed at YOU  a few times also !!! (lol) .... Come on -  He has a FRONT ROW SEAT !!!!      OK , .... Now,...

Lastly,    Where I used to be, -  "convinced/comforted", ... (maybe - somewhat),  by the Drs & the Reports that included words like:

     "Rare"......."could happen",...  "slight chance of" ....  "the Benefits of.... the Meds -
Outweigh the Risks,"   or....  there is the... "Small Chance of..."   (such-n-such) -  
 happening,...   Or,.. "with this  "type"  of JA.....  "there's only a 10-20% chance 
it will be in her eyes",... or  "don't worry,....
your chance for that is slim,...  usually only happens in
worse  or  "other -type" cases...  "risk is greater when on more medicines",...   
 Uhhh... Guess I'm Not so Comforted after all......
I guess it's easier to be comforted in the Calm.... than in the Storm.

WELL,..   As we have found out,...   ( the Long, Slow, Hard Way),.... 
Our  -   " Precious  Little "  -   " RARE  ", ....
" SMALL CHANCE "    Girl -------- 
SEEMS.... to want to .....  PROVE - the Medical World  -  
" W R O N G " ....   AND    " R E W R I T E "   .....  
those  Textbooks   !!!    (lol!)

I Realized --- HE  has been "TRYING" ...... to show me,  that  She  ----- "WASN'T   MEANT"      (created...) ...to    "FIT "  ..... (squeeze into,  conform to,   act/be the same as.....) 
  into   Any ----  " B O X "  (confinement/held back...) !!!!   
   She   IS  -   ......   " ONE- OF- A- KIND "    ...   and   ...    "  R A R E  "     !!!
 
Remember: ........  Keep Pressing "Older Posts" at the Bottom of each Blog Page (Pink),....
to see the Previous Pictures, Videos and posts,.......   (kinda easy to miss)

Friday, July 6, 2012

Busy, Busy, Busy.......




Another Treatment,.....

Physical Therapy.......

And Hanging Around Outside......    (I think she realized, she has Grown Lately & Her Swingset/Club House Top,.... Has gotten too little!  ha ha!!!!)
Uh Oh - STUCK !!!! LOL!

Friday, April 13, 2012

(Pic.1:) Dr. Visit this week - Walking Phneumonia again..... immune system down. (Pic 2:)Puts Heating Pad on her Legs when they Hurt.  (Pic 3:) March Ortho Dr appt....    4/17/12  Now on 2nd week of another Antibiotic for walking phneumonia.... Could NOT get her Remicade Infusion Yesterday & No Warm pool therapy at Lakeshore again this week.  Needs to rest & try for Remicade Infusion Next Monday.  Currently watching Advo Sumt Live Stream in D.C. - We need a cure for these Babies - BEFORE they turn into Adults with Arthritis or disabilities!

Thursday, April 12, 2012