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!!!!!