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Lori B
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Since she was three months old, we've been trying everything possible to save the eye that was ravaged by a cluster of JXG lesions (tumours). She has endured 18 surgeries, countless gallons of toxic soup (chemo, steroids, and other medication), countless hours of vision therapy, and countless frustrations when forced to cover up her good eye to allow the bad one a chance to get stronger.
After great news all along, yesterday we received a blow- her glaucoma is back with a vengeance (her numbers are 4x as high as they should be). She's back on the toxic soup (at an adult dosage), possibly for life. The pressures are so high that there has, for the first time been some damage done to her optic nerve. If it gets any worse, she won't be eligible in the future for the bionic eye implants that they are developing.
Which means that if the pressures won't come down, the best way to protect the optic nerve may be to remove her eye. Mind you, she's been asking if removing it was an option since she finds it difficult to see at all sometimes with the blurry interference from her bad eye (she's lost every bit of vision she had gained, and sees only light/ dark and some blurry colours). This is only a possibility at this point- we'll have to see how well the medication works.
Just thinking of the six and a half years she has struggled with all of this, just to have the eye removed anyway, makes me feel sick. But as usual, we are taking this worse than she is- she really showed little concern yesterday, only asking if the eye drops will sting (they won't), and if she can still play hockey (she can).
Also, Hubby's new drug plan won't kick in until the end of December, and whoo, boy... we'll be eating bread and water for the rest of the year.
Please pray that things will work out for the best (whatever that may be) and that we'll be able to handle this financial burden until the new year. Thanks.
**UPDATE- After a week of three different glaucoma meds, we had another check up with the ped. opth. Dd's pressures are down, but not enough. The doctor added another med that is used in cases of altitude sickness?? It decreases the amount of fluid in the body, which relieves pressure and decreases fluid production (everywhere). There are some pretty scary side-effects, so we are again asking for prayers. So far her kidneys appear unaffected, but because of my brother's history I'm very nervous about it. Her blood pressure is also lowering, her hands and feet are tingling/ numb, and she is very sleepy and lethargic. These effects are supposed to correct themselves as her body gets used to the medication, but we have to wait at least a week to know for sure if things will "even out."
**UPDATED Jan. 15
The side effects didn't improve, so two weeks ago we switched to a milder (but similar) med. At last week's check up, her pressures had doubled. The doctor increased her dosage to the allowable limit, and we head back tomorrow (at 5:30AM  ) for all-day testing. Her pressures will be checked every 2 hours, to see if maybe it's the spacing of her various meds that caused the wild pressure level. If her pressure is up all day, that means yet another surgery next week to implant a drain. The surgery has only a 60% chance of working, but there are loads of risks involved (like with any surgery). The fact that it will be her 19th time under general anesthesia is causing us a lot of worry. Also, this is the first time she's been old enough to understand what is going on, and is understandably anxious. Nothing up to now has seemed to faze her at all, but she feels as though she is being tested tomorrow, and I'm afraid that if she "fails" that she will feel at fault.
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22yod, 16yod (Asperger's), 14yos (dyslexia, APD, ADHD), and 11yod (JXG, glaucoma, legally blind)
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MarieC
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Prayers for your daughter and you. I have girls that are 5 & 7...I will ask them to pray for her as well.
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Marie
mom to 6
dds-98, 00, 02 and 09 & dss-03 and 06
Out in the Orchard
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esperanza
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Praying for your dear daughter
...and for Christ's peace during this storm.
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In His Peace,
Tammy Gonzalez in VA
dh-Johnny
mom to Tara-'85, Noelle-'88, Jeremy-'91, Elizabeth-'93, Emma-'96, Dominic-'99, Gabriel-'01, Elijah-03
and Jacinta-06
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Ruth
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I will be praying for your daughter.
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Ruth
mom to 7 miracles
My family blog
Loreto Rosaries
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kingvozzo
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Lori, praying to St. Lucy and our Blessed Mother.
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Noreen
Wife to Ed
Mom to 4 great kids and 10 sweet ones in Our Lady's arms
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KackyK
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Praying for you and an intercession by St. Lucy. My dd's eyesight was failing exponentially as well (although nothing near as badly as you have, I'm so sorry for your pain and fear) and I prayed repeatly for St. Lucy's help...and last month we found out it has stabilized and she wouldn't need another inch added to her lenses 
So prayers for you and your family and your dd!!!
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KackyK
Mom to 8 - 3 dd, 5ds & 4 babes in heaven
Beginning With the Assumption
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joann10
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Praying for all of you!!
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teachingmyown
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praying!
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In Christ,
Molly
wife to Court & mom to ds '91, dd '96, ds '97, dds '99, '01, '03, '06, and dss '07 and 01/20/11
Remembering Today
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MarieA
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I am praying for you all!
Marie
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SeaStar
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Praying for your daughter- what a brave girl she is.
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Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
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Lori B
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Thank you, everyone! When I told my daughter at bedtime that so many people are praying for her, she was very surprised- because to her, it's really no big deal. That hurts me more than anything- that she is so used to this struggle that the latest (severe) blow is just life as she knows it 
She is a happy, joyful little girl, who loves God's natural world, colour, music and movement (especially hockey)- maybe that has developed as a result of her vision impairment? Who knows.
But she said a sleepy 'thank you, prayers are good'.
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22yod, 16yod (Asperger's), 14yos (dyslexia, APD, ADHD), and 11yod (JXG, glaucoma, legally blind)
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Maria B.
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You and your little girl are in my prayers.
Bless you,
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Maria in VA
Proud Mom to 10 Great kids!
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Wendy
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Praying for all of you, Lori!
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God bless,
Wendy
Wife to Chris
Momma to Grace, Sam, Ben, Maggie, Mary Cate, and Jamie
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Caroline
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Praying!
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Devoted Wife to  and Mama to three beautiful boys and another little boy due in September , and two beautiful souls in heaven
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Lori B
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| Posted: Oct 23 2007 at 7:39am | IP Logged
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update in original post
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22yod, 16yod (Asperger's), 14yos (dyslexia, APD, ADHD), and 11yod (JXG, glaucoma, legally blind)
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Taffy
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Praying that things will improve for your daughter soon!
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Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
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joann10
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I will continue to keep you daughter in my prayers...
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Cay Gibson
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Praying hard for all of you, Lori.
God's peace!
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Cay Gibson
"There are 49 states, then there is Louisiana." ~ Chef Emeril
wife to Mark '86
mom to 5
Cajun Cottage Under the Oaks
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DominaCaeli
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Praying here, Lori!
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Blessings,
Celeste
Joyous Lessons
Mommy to six: three boys (8, 4, newborn) and four girls (7, 5, 2, and 1)
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cathhomeschool
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Texas Bluebonnets
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Praying, Lori. May the Holy Spirit guide you all and the doctors to what is best for your daughter.
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Janette (4 boys - 22, 21, 15, 14)
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4Real Forums : We Pray to the Lord
Topic: For my youngest- updated Jan. 17
