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Nina Murphy
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| Posted: Feb 11 2010 at 7:25pm | IP Logged
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Sorry it has taken me so long to give news! Thank you to all who have been praying for Clare and Joey! It is YOUR prayers that have made the difference, I am convinced.
We had an appt. last week. My husband took them for the first time in a long while, so I was actually not there to get the details but this is what he reported:
Their weight is good. My daughter's BMI went down, but not significantly. My son's weight gain was great. He is finally 50 pounds and that is fantastic.
Oxygen Sats were good.
Pulmonary Function Tests were the same, no decline.
We don't have the cultures back yet, but the docs told us they need to continue the TOBI for the Pseudomonas. It is kind of a bummer to hear that they want them to basically be on it for the rest of their lives, one month on, one month off. It is not cheap, and it takes time (for my husband---it has reproductive side-effects, so I can't be near it); and the kids do not like it, which is the hardest of all.
They do want them to continue the Hyper Sal, which is a very concentrated inhaled, nebulized saline solution that breaks up mucus in the lungs and helps them to cough. It is basically a modern form of Chest Therapy that can help to replace the "poundings" to bring up mucus, discovered by the Australians ( CF surfers who have longer life spans and overall health!) I always knew we should live by the salty sea air!
Continue Albuterol and steroidal aerosols.
Everything else the same....they did not require blood tests for vitamin levels, which made the kids sooooo happy. They hate that.
They are doing very well---thank you, thank you to all who have prayed for my family and my dear children. CF is challenging, but with God, and friends like you, it does not need to be depressing!
Love and hugs. I will try to keep updated. I am lousy at that....  
=-----------------------
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Christine
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| Posted: Feb 11 2010 at 7:42pm | IP Logged
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Thank you for the update. I am continuing to pray and asked Fr. S. to do the same.
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Christine
Mommy to 4 girls, 5 boys, & 2 in God's care
Memories of a Catholic Wife and Mother
Pretty Lilla Rose
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Nina Murphy
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| Posted: Feb 11 2010 at 8:41pm | IP Logged
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Means the world to us. Thank you, dear Christine!!!
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Mimip
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| Posted: Feb 11 2010 at 9:33pm | IP Logged
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Nina,,
You have been in our prayers especially since my dd's best friends are twins with CF. I think of your little ones a lot!
Lots of 
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In Christ,
Mimi
Wife of 16 years to Tom, Mom of DD'00, DD'02, '04(in heaven) DS'05, DS'08 and DS '12
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Maddie
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| Posted: Feb 11 2010 at 9:54pm | IP Logged
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Nina, I am so happy to read the update! Your family will remain in my prayers. 
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~Maddie~
Wife to my dh and Momma of 9 dear ones
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Nina Murphy
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| Posted: Feb 11 2010 at 10:12pm | IP Logged
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Mimip wrote:
Nina,,
You have been in our prayers especially since my dd's best friends are twins with CF. I think of your little ones a lot!
Lots of
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Wow---I would love to hear about them! How are they?
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Nina Murphy
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| Posted: Feb 11 2010 at 10:13pm | IP Logged
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Thank you for your prayers, Mimi and Maddie! (Love those M names....we have 3: Mary, Matt (called Matty for years), and Maggie (Magdalene)!
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Chris V
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Being relatively new, I didn't know any intimate details of your children's health ~ I'm so sorry for you, them, and all.
You will surely, surely be in my prayers
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Chris
Happy Wife with my Happy Life
Mama to My Five Girls ('04~'07~'09~'11~'11)
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aussieannie
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Continuing to pray, Nina, great to read the update, asking God to bless you all!
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Under Her Starry Mantle
Spiritual Motherhood for Priests
Blessed with 3 boys & 3 girls!
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Zeliemum
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Praying for continued improvements and also continued peace. God has bless you with your little ones, may He keep you close to His heart.
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Mother to seven with five in heaven...Spiritualmotherhood for Priests
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Ruth
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Dear Nina, you are in my daily tprayers, especially at Holy Mass. God bless you and your beautiful fsmily
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Ruth
mom to 7 miracles
My family blog
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SeaStar
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| Posted: Feb 12 2010 at 11:22am | IP Logged
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Nina-
Thanks for the update! I am glad to hear they are doing well. I will keep praying... maybe someday there will be an alternative to TOBI.
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Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
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Mimip
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Nina,
I'm PMing you
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In Christ,
Mimi
Wife of 16 years to Tom, Mom of DD'00, DD'02, '04(in heaven) DS'05, DS'08 and DS '12
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DominaCaeli
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Continuing to pray here for your dear children, Nina--thank you for the update!
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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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Nina Murphy
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| Posted: Feb 12 2010 at 3:00pm | IP Logged
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Chris V wrote:
Being relatively new, I didn't know any intimate details of your children's health ~ I'm so sorry for you, them, and all.
You will surely, surely be in my prayers |
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Chris, thank you.
The children are doing pretty well for CF, and we are very grateful for all of the prayers being said for them. Joey is sick, again, today---but for the most part, they are great. My husband's brother struggled so much more, stopping throughout the day gasping for breath, not being able to eat at all and being malnourished throughout his fight and in and out of the hospital. He passsed away in 1979 at 13, but they were amazed at how long he lived. Things have changed SO SO much and we are very blessed to have available to us all of the modern technologies, studies, and meds.
So, long story short: THANK YOU for your prayers. They make all the difference!
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Nina Murphy
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My Annie, Chemai, Ruth, Melinda, Celeste---- thank you as always for your friendship!
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God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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St. Ann
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Praying for your children, Clare and Joey, and for your whole family.
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Stephanie
Wife and mother to Hannah '96, Maria '99, Dorothea '01, Helena '03
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stefoodie
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Sorry I missed this, Nina. Praying!
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stef
mom to five
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Bridget
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Glad to hear the good updates Nina. You are doing a great job caring for them!
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God Bless,
Bridget, happily married to Kevin, mom to 8 on earth and a small army in heaven
Our Magnum Opus
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Mackfam
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I've been wondering how they were doing, Nina, and I'm so grateful you took the time to post and let us know! They've been in my prayers, as have you and your husband and family! You'll remain right there! God's peace and tender mercy be yours!
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Jen Mackintosh
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Wildflowers and Marbles
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4Real Forums : We Pray to the Lord
Topic: Update on Our CF-ers ( added p. 2)
