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| 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
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!
"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!
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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!
