https://youtu.be/zDDm2dqBN4o

https://youtu.be/rU8owXFWaR8

Discovered most of these videos and links have been removed or no longer work,..... sorry!!!  I’ll try to start working on the blog again!  I just got use to posting all on Facebook link.

Bailey in the hospital/long overdue rant! LOL

FIRST BLOG POST IN A WHILE....Bailey in the Hospital

The following post was started as a response to a fellow JA mom's FB post.  However, it ended up much longer ..... kind of a self-help therapy session/long overdue rant/release of steam/update! LOL Anything before this (and after last blog below...) has been on Facebook Page.  I haven't felt like blogging here in about a year, even though much has happened, sorry.... But please know - your continued prayers for us always have been and always will be - Greatly Appreciated!!!

 Kim Smith - regarding your post about more advocacy - pm me the specifics.... I KNOW I should KNOW, but over 10 years my emotions have gone so far up then so far down and battling physically, emotionally & spiritually for so long and to keep having more things/problems/diagnoses etc come.... it's been some pretty hurtful blows 😒 I have been strong and confident but I am also weak/tired/angry/discouraged/worried/depressed and - Fed Up!  .... I haven't wanted to really be a part of the "JA community" or "Claim" or even "Share" in quite a while now, but these "current circumstances", are making me believe/realize, that I should again.... especially after reading your post about insurance companies.  I'm also, Upset that our insurance company (same one/policy we've had since before, Bailey was born, 12 yrs ago...) switched their "prescription/specialty meds" company/"supplier" a couple years ago - to save them money) regardless of how it affects us... and so we have to have the meds (Remicade) and all supplies (from mixing solution, IV pump to tubing, syringes, needles, bandaids, epipen --- everything) shipped to our house... and then because of "Childrens Hospital" rules---they won't accept "outside" meds/supplies--- so she has to go to an office type bldg (not even a Dr office) on 280 where there is just 1 room, 1 patient at a time, mostly adults (we've only seen 2 people in passing) nothing "kid friendly", actually quite boring.... and actually kinda depressing... where all of the years before - since age 2 & 1/2, (even before the Ped Rheum Clinic/Infusion Room was built)...she did her treatments (wether weekly or every 4-6 weeks) AT CHILDREN'S HOSPITAL, (then the Infusion Room when it was finished being built 6 months later)... where she was around other kids like her going through some of the same things, nurses specializing in kids and these procedures/meds... Ped Rheum Dr. right there...and kid friendly atmosphere, lunch/snacks, cartoons, coloring, face painting lady that would visit often while they were getting their  meds/IV's... etc... SOOOO much more relaxing & calming.... she always had a smile on her face and usually brought encouragement and/or smiles to others there as well - kids and staff...
It "seems" like she kinda helped - "bring awareness/pave the way" - spreading awareness about JA... sharing her story and sharing each upset/problem that popped up with her body along the way and the different routes taken to combat these "surprises/"rare occurrences " - connecting with other kids/parents through her blog page... answering emails we received (some from different countries) kids saying how seeing her get IVs, treatments, methotrexate shots, procedures etc... have helped them and gave them courage to do the same... encouragement for kids and their parents of how she has gone through these things (with a smile & positive attitude) and what they could expect etc...   But... then Kinda  - "seemed/felt" like she was a "poster child" for the arthritis foundation & the new Ped Rheum. Clinic/Infusion Suite & spreading the news about this disease and how it needs so much more research and awareness... and how great this all was for other kids from Alabama -GA-Florida etc... that had to travel here just to get to see an actual Pediatric Rheumatologist/Specialists... she was Jr Honoree a couple times / her story/video/blog/newspaper articles/ online articles/sites with other groups/ pictures for magazine article, etc... used for the walks/kickoff luncheons, corporate sponsor events, fundraisers etc........ and all that was fine--- we would totally do it all again to help raise awareness and help find a cure... especially since the Arth Found helped us to get to the National,Yearly, JA Conference the first couple years after diagnosed... the educational classes we took there gave us so much more understanding and awareness - and Hope... about this disease... and it was fun/nice/encouraging - for Bailey to get to see and meet other children like her... going through some of the same experiences as her... the good and the bad... and for our family - being able to be more educated/more prepared of what this disease can/may do... and to do all of this, in a Fun/Encouraging/Special - way for the kids... was really nice.  But not being able to afford to go to these conferences, for the last 8  years,  has become discouraging... almost like they were "done" with using her story/pictures/videos... and moving on to another kid and forgetting all she had been though and done for the awareness... and how since several issues with her were "rare/not textbook"/ some things they had thought/diagnosed/assumed...wouldn't happen, did happen... (not that we blame Drs at all!!! We understand - now - how crazy this disease can be and how different it can present in different kids.... and how - most all - of Bailey's Medical History, ends up a "mystery/rare/extremely hard to diagnose, explain, treat..." just like now - while she's been in the hospital  off and on, for over 2 weeks in pain, vomiting, not being able to keep any food/drink down... loosing weight... facing possible feeding tube... - Miserable...(physically & emotionally)... anyway... we're All "human" and Non of us know,  the "exacts/answers/fixes, etc.... we just try and do the best we can with what we know... believe me - we are thankful for the quick diagnosis and care she has received).    But do feel that these yearly conferences - that are - "SUPPOSED to be... Help/Fun/Encouragement/Educational... - FOR JA Kids & their Families".... - are really only for privileged ones who can afford them each year. They want JA families to raise awareness, do walks, raise money etc.... but yet families still can't afford to go to these "conferences" - that "they put on" and are "supposed" to be put together - just for them.....???  Something's just not right with that.

Also, since most of JA is silent/inside the body/joints/eyes/organs... not seen much by others or harder for people to see-believe-really understand... it gets discouraging... sometimes it can FEEL like people are thinking - "its just arthritis pain/a little stiffness or soreness"... "it's all in your/or your child's head"... "It's Not a Serious condition", "its not a true Chronic Illness", "it shouldn't stop them from normal growth, activity, learning, shouldn't Really,  affect them - physically, mentally, emotionally, spiritually"....  like "you're/they're making a bigger deal of it than you/they should be"... With not being considered as a true "disability" - (we are first taught, at the conference, to...Not "tell/teach them/refer to this... as a "disability" - don't give them "special treatment"... make them believe that they are the same as everyone else and can do what everyone else can".... so that's what we did.  And probably to the extent of NOT sympathizing with her enough and being tougher on/expecting more from her - than a normal/healthy child.   And now, being through ALL we have been through over the past 10 years... seeing/dealing/living through/and living - With - all of the "extras"/"rarities" that have - seemingly come out of nowhere along the way... when we weren't prepared for and told we didn't/shouldn't "expect" ... Because they were "rare" and 99% chance they wouldn't happen..... Yet they did..... and More.  (Again, not blaming on anyone or anything... the Drs/us/parents... can only go on the past research... and what has worked for some, or what new meds are being "tested/tried/in the works/trying to get approved.... but also recognizing - that small %... "Could" Happen - and - even More - than what they've seen/experienced/witnessed/dealt with/heard of etc...   Recognizing all of this Doesn't make it any easier.... just shows that we are all Human - and how bad -  Research and Awareness are Needed!!!

And people/the world,  need to be made aware that in JA kids - their immune systems HAVE to be suppressed.... they are much more susceptible to catching flus/viruses/and serious medical conditions/problems---- and unfortunately - they can get 100 times worse and it can take 100 times longer - to get through/over - than kids without autoimmune diseases.  Not to mention all of the other complications/ side effects/dangers/risks... that go along with this "disease" - AND - also the dangers/risks that come, "with"  or are just "side effects" of the - Medicines themselves... the Biologics/Chemotherapy/Immune Suppressing/TNF-Alpha Inhibitors and other special medicines used to "help with the symptoms" or "treat" their symptoms.... as there is currently still No Cure.

As JA Parents.... we  will probably - always - have these concerns/struggles/worries/fears.... not knowing what the future holds or how long our children will have to suffer... or how long will it be until the world - Really - Accepts, Truly - Understands & Starts To Recognize the special "needs" they may also have -  even though some of them may "look" fine - on the outside, don't "currently" wear braces, in a wheelchair or confined to a bed... this illness and All, that it can entail... IS Serious.   And, "RECOGNIZING" - And - "CARING"  enough... to stop - and wonder  --- Why we can cure "most" people with Cancers ---- yet we can - NOT - cure this?!?    There is NO - KNOWN - CURE - for our Babies...... and Yes... the World --- NEEDS - to "REALLY" ---"HEAR"--- "UNDERSTAND" --- and "THINK" - about this.

I also understand now, that no matter how we chose to accept, ignore, not believe, refuse/rebuke, not claim, suppress.... this nasty disease.... it's still "Here"... it's very "Real" ... and unfortunately, it's something we - WILL/DO - Have to Deal with.... at least for now... and seeing your child suffer in pain, begging for help/pain medicine, not eating/drinking, having to be "cleaned out" in various ways- from top to bottom, for scopes, continually vomiting harshly to where their ribs and throat are so sore they cry....
And, they're asking - "YOU" - (the person who is supposed to be able to make everything better/ok).... "WHY - this is happening to them .... and ... WHY - won't this just go away?!?!?"
... and wondering "why" - with several Drs and many different tests, nasty medicines, procedures, sticks... they have put her through... they still aren't able to quickly "ID the cause" and then "just fix the problem" ....  does kinda seems Barbaric with our technology today...

The Guilt feelings:
 of me making the decision to stop her meds a few months back... believing she was healed and after 10 years of these continuous strong medicines... desperately wanting her to just be able to experience life without medications for once... just abruptly stopping them and declaring healing.... maybe burying my head in the sand... after the first couple months seemed ok... not wanting to See/Believe  the problems/hurts/complaints/emotional changes/... then the cells attacked the eyes again... just trying to use the usual dilating and steroid eye drops every hour around the clock didn't help this time.... luckily there was a new, stronger drop to use and after a while, they worked at clearing the eye...(but also cause cataracts and glaucoma).... so knew she would have to go back on the biologics as Dr said....

It felt horrible, knowing that I caused her to have this eye flare again and having stronger meds and so often... but at least we tried... we prayed... we believed... we. Claimed... --- now.....
before we could even restart the meds... all this comes up and puts her through SO much more!!!  Talk about hating yourself--- feeling incompetent... unworthy -  of having this beautiful girl in my life to take care of..... Failure!

One of the Drs mentioned one day, while discussing this... that we really never know- being Off of the meds,  may have "unmasked" this problem... especially if it's Chrons... because Remicade is one of the medicines that they use to help with Chrons - therefore this problem could have been there a while and we never knew it... or have gotten worse... and/so now, if this does happens to be Chrons or related .... they will be able to use more/right  meds to combat it and help with symptoms.... ?  Nice thought.... that this could have happened for a good reason... or God is looking out for us and let this be discovered ...??? Who knows?  Doesn't really matter.... it still Sucks and Hurts that SHE has to go through Any of this!!!! No child should ever have to be put through all of this and what's to come! Last night I was able to comfort her for short periods of time, between pain spells, a few times when she asked me to hold/rub her hand... so I stood by her bed (with my back and knee giving out... and feeling like crap that I could even feel my pain over hers) and did that until she was able to drift off to sleep a short while each time, before waking and asking me if I'd come do it again... I didn't let her see me tear up.... but I hurt so bad for her... not being able to do more for her...

Now - she has been in some serious pain with this... grouchy... rude... downright mean to me here! Lol  yelling at me to Stop shaking/moving the bed- when I didn't even think I was touching it... and to Stop rubbing her back because it just made pain worse... etc..... 😳🙄  But then later - she apologizes that she said those things.... she was just hurting so bad... ☹️ I tell her .... that's ok... I'm not going anywhere... and that's just part of what Mamas are here for 😊.

Ok .... I'm done "ranting/raving/complaining"....  guess I'll feel fear/failure of some kind, all my life.... think we all do - some just stay hidden better/longer... But I have SO much to be thankful for!😇🙏 So... Time to get back up again ... and try harder... 😊

Finally back on the Remicade - after a year of searching/trying!

IV in & eating a cookie

Just Waiting it out

Tired

Getting IV out & Ready to go!   Sleeting and
29 degrees out!

MEDS CAME & Tomorrow is first treatment again...

WOW, Supplies came for 1st two Treatments!

Here is the $12,000.00 Remicade

 

     Well the meds finally came!!!  All I can say is WHEN GOD MOVES A MOUNTAIN OUT OF YOUR WAY.... HE REALLY MOVES IT! There is no other way to explain how all this happened.... But to declare it is a miracle. It still baffles my mind !  But, yes I am still scared of the meds (see pics below), but must remain faithful to believe that HE wouldn't have moved this mountain, in this huge way, unless it was good... So as we begin this journey again.... I will fight Fear with Faith. 

      󾌵. PS- Brodys MRI:  dr said si joints look good but there were a couple pockets with fluid... And asked if he has had diarrhea..??? I said No... So he wants a stool sample this week, just to check.

     ***Thank you to all who have been praying for Bailey and Brody, and please continue to!  Bailey will get her first infusion treatment, in over a year, tomorrow.
.... I'm a big ball of emotions... Happy, fearful, hopeful, reluctant, overloaded, anxious, drained.... But somebody's prayers are getting through, so please keep it up and thank you for your faithfulness. 󾌵

 

 

 

 

 

 

 

 

 

 



MY GOD IS AWESOME !!!!

Check out this Update & then check out one of my favorite songs,.... which means even more today!!!! AWESOME, By Charles Jenkins
　

Some exciting news:

After weeks on the phone to insurance, drug companies, infusion places, etc...... We may have a Breakthrough!!!!!!

I was inspired by a man in church Sunday who spoke of how he had stage 4 cancer, and 7 months later, was healed!!!!! Praise God, and I thought,.... We'll if God can do that,... I have faith he can help us with Bailey! So, during worship, I prayed, cried, had my husband and another friend on each side of me praying, as I was trembling....

Long story, but, here goes:
Our Insurance company has a separate drug company, the drug company has a separate "specialty Meds dept" for Meds like the chemo, and biologics...... that Bailey takes. These Meds are mail ordered, because of the outrageous costs mostly,.... And Children's Hospital will not accept Meds like this brought into their hospital, to be infused into patients... (Therefore being billed @ $16,000.00 for each treatment she received there.) So that's why we were looking into a home infusion option, and hitting wall after wall because of these places not wanting to do the Remicade.... And/or.... Not infusing pediatric patients.

Well, out of the blue.... The specialty pharmacy company called me and said our insurance company finally approved her for Remicade again and will cover cost of the Remicade medicine ....(5 vials currently, which is pretty costly.....) But as I've been explaining to everyone, there is NO place that will do the infusion of it!!!! --- Well, she explained to me that since Remicade has to be done by infusion, over a few hours, and monitored by a nurse the entire time,.. then the infusion costs, for "administering" it to her,.... Is also covered under the specialty Meds portion of our prescription plan !!??????!! WHAT ?!?!?!?

Yea,.... In shock and unbelief, I questioned her many times.... How could this be, after years worth of $15-16,000.00 treatments,..... How could this now happen?!? She said well before, our insurance probably filed under major medical,..... But now it is filed under the specialty Meds portion of the prescription plan,..... I again asked,..... So we pay our portion for the medicine, but the infusion center, which THEY found and arranged,.... Will bill my prescription company, not us, for the administering of the medicine also!, WHAT ?!?!?!

I've been praying, as many of you also have, this past year, that these painful Humira shots (that some say burns badly, and some say it feels like shooting glass under your skin) could stop and somehow get her back on Remicade, that seemed to work better and Bailey likes much more than the painful weekly shots of Humira.... There are Pros and Cons with both, and the nurse told me on the phone this morning, that they are about the same, TNF-Alpha , Biologic Meds,... (But both come with a black box label warning that, while taking these drugs, there have been rare cases of getting an Incurable Lymphoma Cancer (fatal) while taking these drugs..... So that's always in the back of my mind,..... Especially since almost everything that has happened to/with Bailey,.... Has also been called "rare" or "not textbook"....

Since having to switch to the Humira, she has been more tired, sore in more areas, grumpy, emotional, etc... And the Psoriasis has gotten way worse, appearing on her scalp, legs, tummy, neck, elbows,.. Almost everywhere!!! ... BUT her eyes have remained clear..... Since doubling the Humira dose.

The Remicade, made with mouse protein,.... Eventually is rejected from your body as it is a foreign substance that's not supposed to be in there..... And each time that happens, we've had to up the doseage and the weeks, ( per her body weight, she should be at 150 mg,.... But she is at 500!) as well as using steroid and dilating drops to get and keep her eyes clear again, when the cells attack...trying to blind her quickly... The Chronic Uveitis part of this mess! But she liked it better than the Painful Humira shots, and she wasn't as achy and sore and tired then.... (Now, some of this could just be the disease itself progressing more..... But we don't know till we try). Downfall for Remicade was that she was getting blood and protein in her urine, during labs. Had to regularly see Nephrologist, who eventually had to do a biopsy of the kidneys.

We know there is no Cure for this disease, and we know that the Med. choices are scary,.... But have been praying asking God to choose the right drug, and make it possible/easier on us all. So, as the Devil always does,.... He has brought doubts, unbelief, and what ifs to my mind again, day and night,... But I now feel I have a little more faith then I had before and know that we are to expect good, not bad,... And what He can do for one person, he can do for another.... HE CAN TRULY MOVE MOUNTAINS AND MAKE A WAY WHERE THERE IS NO WAY!!!!! This mountain has been in our way for 8 years of her precious life now.... We are truly grateful that she is not bed ridden, disfigured, confined to a wheelchair, or blind.... And we know this isn't a CURE.... But it's the next best thing!

He has made a way, where there was NO WAY,.... Believe me, ..... I've been trying like crazy to get her Remicade back, and was repeatedly told - there is NO way! So I figured it was a sign from God that this Humira must be the better choice...... But now I'm thinking that He just Totally "BLEW UP" this mountain and is leading us,... to the best way.... HE has made a way! WOW!!!!

I know of and have experienced some miracles and answered prayer over the years,..... But this Mountain, this Massive Obstacle that has lived in our way for years now and we couldn't SEE over it, let alone GET over it, or around it or through it.... Has now been moved, by the only one who could move it!

She will still be on her other Meds, like the Methotrexate (low dose chemo) shots, the Sulfazine, etc... And since these bring her immune system down even more, she'll be more likely to catch sicknesses, infections, etc... But we will just continue to be careful as we have in the past 8 years, and monitor her labs, and have faith that this IS His will, for now.... And that He IS walking through the Valley with us, and it's time for me to FEAR NO EVIL....

Not letting the devil get a foothold into my mind, (as he has for years) as I've tried to live and to function (paralyzed in fear at times & failing miserably some days) each day, in fear, of the what ifs..., the rare side effects that pop up out of nowhere and frustrated they end up with no explanation, because more research needs to be done,... The fear of future side effects, and outcomes we will be faced with... The constant checking on her at night for breathing, the Guilt that I feel, when she doesn't walk/run perfectly normal, the "invisible illness" part that no one sees or understands, because she looks normal....and the emotional roller coaster she lives on. But worse yet,... the fact that when I look into her eyes,.. I am constantly checking/monitoring to see if there are different pupil sizes, changes... indicating the horrible cells are back attacking..... - and therefore - I'M NOT JUST SEEING THE "BEAUTY" IN HER EYES.  But today when I told her about all this.... Her Eyes LIT UP with happiness!

TODAY, I have a little more stregnth, faith in God, and assurance that He wants GOOD for His people,... And we are His people! And for this all to happen, like it suddenly has,.... IS A MIRACLE! And it gives me chills when I even think about it, and all the people who have been praying for us for years,..... And only getting - mostly bad news reports, or updates..... And today I can share this GOOD....EXCELLENT update/news with you All!

I still don't know where this all leads,... But I KNOW, I am Not Alone! For HE has literally, moved a MOUNTAIN for me, and it's unlike anything I've ever experienced before!

CLICK HERE!!!! :
http://youtu.be/32SflTl0rZ8

Update: Stilll waiting,..... and hoping,... and fighting,...

Sweet Picture of Bailey, Years ago.... :)

https://www.facebook.com/CureArthritis/posts/10152744746828892

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Posthttps://www.facebook.com/CureArthritis/posts/10152744746828892">Post

> by Arthritis">https://www.facebook.com/CureArthritis">Arthritis National Research Foundation.
UPDATE: 
Well,.... round one of the "In Home Infusions" failed.   Next, the appeal,.... well after several hours on the phone with Drs office and mostly Insurance Company, R/X Company,...... finally got a letter stating the R/X Remicade Med. is covered under our insurance (which we KNEW,....as she was onit almost 8 years !?!?!) ----- but nothing about the In Home Infusions - that we are wondering about !!????!  WOW !!!!  How hard is it to get 1 answer from BCBS Insurance ?!?!?!  We are just WONDERING " IF " it is a Possibility to do this or not!!!!!!   And if so, can we afford it????  So far so many roadblocks, yet we keep repeating the Same information to Several People Involved ?!?!? IS HOME INFUSION THERAPY OF REMICADE COVERED UNDER BCBS & IF SO ...... $$$ HOW MUCH WOULD WE BE RESPONSIBLE FOR ??????!!!!!  UGH...... !!!!!!
      They were$16,000.00 Each, when we had to stop them and switch to Humira,.....  Why is it SO hard to get an answer ???!!!!   Meanwhile, she is dealing with more meds, more dry, flacky,  plaque psoriasis patches on her body and scalp...... more emotional rollercoasters,..... attitudes from ____, Complaining and fighting against meds - even hating the drops and ointments for the psoriasis spots, that help her.... and NOW she catches a COLD ?!?!?!!   OMG !!!!!   So - No Humira last week for her, since it would bring her immune system down even more, and the flu scare is rampid enough right now for regular people, let alone Immune Suppressed Kids !!!  UGH !!!! Which means more soreness & Pain & Grouchiness !!!!!!
     OK,... Tantrum DONE!  Time to put on my BIG GIRL PANTIES and get back to business,... well,..... Life - Church, Friends, Home School,  Bible Study, Classical Conversations Classes, Appointments, Swim Therapy, Lakeshore Foundation, Piano, housework, declutttttering many piles, trying to get more organized before I have a stroke (lol) , Back to Insurance Companies, R/X Plan companies, Middle Men, etc, etc, etc...... WHY do we hold on sometimes?...... JESUS! The Only reason Im still here ! :)

Looking into IN HOME INFUSIONS ........

We'll,.... It's a new year and these painful Humira shots every week, just are not working, even with the other Meds.  The psoriasis part is showing it's ugly head everywhere.  Legs, elbows, scalp, tummy, and now her face ?!?!  One Angry Momma!!!!!   Her emotions are all over the place :(.  

SO.... I have spent the last couple weeks looking into Home Infusion Therapy for the Remicade, to go back on it.... IF we can afford it!   Insurance is a joke sometimes!!!! When we had to stop these infusions over a year ago, they were billed at over $16,000.00 EACH!!!!    BCBS doesn't pay much of that at Children's Hospital, so I'm looking into how much they would be if a RN came and gave them to her at home.....  Allready made several calls to dr office, insurance companies, pharmacy part of insurance, drug company.... Spent days on the phone back and forth with insurance company just for them to LOOK INTO the possibility of this!!!!!  Because of allergic reactions possible with Remicade they may not do it.  And also they said, I'd have to find an In home infusion therapy company that would come out and stay however many hours needed to run the infusion. :( :( :(.

I'VE SPENT THE LAST EIGHT YEARS ,- ( while she was on Remicade and still in pain and cells attacking her body and especially her eyes,.... Trying to blind her, And that it's made from "mouse protein," (which no momma wants put into their child's body) and her body begins to reject it after a while, (because it's foreign)... and she has always been way over her Max doseage of it,... While taking the low dose Chemo, methotrexate and other Meds AND eye dr treatments,... Drops, etc..., and having to see her Nephrologist often due to blood and protein in her urine, and having the kidney biopsy done.... . And in fear each and every day waiting for the side effects to pop up, ..... Mostly the lymphoma cancer-especially since she was over her max doseage for years!!!!) - HATING THIS DRUG.... Now it's looking like it's the only thing that kept her with less flares and closer to remission.... Although we've never reached remission in the eight years since diagnosis at age 2 !!!!!  She has had to endure so many RARE SIDE EFFECTS of the disease and the drugs, it's ridiculous, when some people can use one pill or shot monthly, and go into remission!!???!

I thought the Humira may have been a blessing in disguise, (when we lost help from CRS and could no longer afford the thousands of dollars per treatment)... but it comes with it's own problems.... Especially the fact that it burns bad going in, even after numbing cream for two hours and ice packs, she still runs from me, hides, and screams!!! :(  and she is now taking over the adult doseage of this!!!! With two other Meds..... And the psoriasis part is appearing more and more! She is sore a lot, especially feet, legs, hands ( which doesn't help with doing her homeschool work) and back/neck.... She doesn't sleep well, and her emotions are all over the place!!!!!!    But to look at her, most times, you can't tell there is anything going on in her little body, but there is SO much happening!  Her body is fighting against itself and can not shut off, thus causing all this damage!!!  Something has Got To Give !!!!!!!!

It's Been A Long Time, I Know,........

Hello Friends!   I know it has been a very long time since I have shared with you the updates on Baileys condition.  I am sorry and will try to find the strength to do better in the future, but this disease swallows up the whole family..... it has made me Angry, Sad, Depressed, Confused, and Quiet.  Today I will just give a brief update, and hopefully add more later.  Thank you to all the followers & friends who continually pray for us,.... I believe it is the only thing that is getting us through this!
Bailey can no longer have her Remicade IV Treatments that she got for almost 7 years, due to the cost.  They are billed at over $15,000.00 EACH, and Blue Cross only pays about $6000. of that and Childrens Rehab Services of Alabama CRS, was helping with the remainder, but we no longer qualify for their assistance. (One of the things that make me SO angry!!!! Because it should depend on the childs NEED for the Medication, NOT the Income of their Families, when its that large!) I don't know anyone who can pay that much for each treatment, whether they were the 2 week treatments, or the 6 week treatments, where we had to stop,....)    So, Our only other choice was to start her on HUMIRA Shots.  Those of you who know about it know why I am unhappy with that!  It Burns Bad, and people say it feels like Glass shooting under their skin.  Believe it - because there have been days where we have tried everything to get her ready for the shot, and still end up having to chase her down outside, kicking and screaming - or find her hiding. :(  As a parent, this brings on depression, resentment, anger, and withdraw..... it has affected our lives in many was, one just being this blog.  I am so upset about all of this happening, and feel so useless, & hopeless... there is nothing I can do!)  Anyway, there has also been a couple Pills added to her daily regimen, that don't seem to work either. - And the biggest Kicker ----- Her Uveitis (cells attacking her eyes) has flared several times while on this new Med.  So the steroid eye drops and dilating drops have also had to be used several times (concerning to Drs because they to can cause cataracts & glaucoma also)  At one point Eyes drops 16 Time a day. So The Humira has already increased from the childs dose, to the Adult dose -AND instead of biweekly - is now Every Week, thanks to the last eye flare.  We do the knumbing cream 1-2 hours before and the ice pack after that, tried the Buzzy Bee device to distract, and none of these work!  It Kills me each time she screams and says " No Mommy, Please, No Shot, Just Don't do it, It doesn't help anyway - please don't...."  Then as I finally get the needle in and start the med,.... she screams "Ouch... Take it out Please Stop!!!!!...... etc"  It is one of a parents worst nightmares,.... you have to actually numb your own emotions, to be able to withstand giving the injections and trying to drown out the sounds by thinking - "this is what I HAVE to do to Help her,...and I'm only doing this because the Drs say I have to,... or she will be crippled or blind!..."  What a choice, huh?!?  
     Amongst all this, her Psoriatic part of it has flared a few times also.  Her scalp and especially behind her ears become inflamed, itchy, then raw....  Her ear (just one again), has swelled and turned red and purple, for no reason we can find again..... She aches more all over now.  Especially complains (when she does complain - which she usually wont) She says her neck and back hurt,.... her knee, ankle, feet, hands hurt,... and has many headaches......... Her emotions are another really big issue.  She can be mad at the world at one time, then crying and running off at anther time..... Sometimes she says she HATES to go to LAKESHORE FOUNDATION (where she gets swim therapy , etc...to keep her moving) and I just have to ignore her and take her anyway.... some days are harder than others, but usually shes better once shes there - the instructors are so nice and kind, and they know her situation & seem to help calm her and help her to have fun - which she needs more of ! :)
     Well, there is much more, but for now, its time to go watch Kristy McPherson Womens LPGA Tour, who had a form of this disease as a child and thankfully went into remission and serves on the ANRF Board to help spread awareness and maybe one day find a CURE for these Kids who suffer in Silence!  Remember for current updates, we are usually on our Facebook Page, listed at the top & Thank you to everyone who has been and continues to pray for us,.... I believe that is ALL that has gotten us this far!

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!!!!!

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!

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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!

 

 

 

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 !!!!!! 

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)

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!

(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!

Therapy

During one of Bailey's Recent treatments...

Many more Pics & Videos on Facebook, including video from this day.  Kinda hard to watch - No Child should have to go through this & she is on her 5th year, at age 7.  She is doing Physical Therapy, Pool Therapy,... Most recent news:  Enthesis.  More where tendons & ligaments attach to the bones.  Knees were turning in more, was told her Hips had fallen foward so she is trying to build up her hips/core area to hopefully bring them back out........  Seems there is something new everyday.  Such a tough little Girl!