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 ! :)