Ira's still here!
Sophia got up from her nap the other day, ran to Ira's crib in the living room and upon arrival announced, "Ira's still here! Hey Mom, Ira's still here!" Our precious daughter doesn't know what to expect from day to day. She's feeling the effects of all this and is acting it out. I ask that you pray for her.
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Our mornings and evenings are chaotic. Ira needs quite a bit of our attention during those times. With meds to give, trach ties to change, feeding bags to switch, baths to give, throw up to clean up, and machines to maintain we can find ourselves immersed in Ira's world. And it's all very stressful.
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Ira is still on the same meds he's been on since his NICU days: Viagra, Lasix, Prevacid. Along with those, Ira's on three controlled substances: methadone, ativan, phenobarbital and two other diuretics. This past week, we've been tapering off the methadone and ativan. Today is his last day on those two meds. Ira's not doing well with the wean. He's so dependent on them. Read any account of a drug addict coming off his/her drugs and that's a glimpse into Ira's world. He shakes. He shakes when he sleeps. He sweats. He throws-up constantly. And he's unhappy.
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Ira's been out of the house twice since being home. I can't describe to you how much stuff has to accompany Ira when he leaves the home. Someday, I'll get someone to take a picture of Laura, Ira and me as we head out. I now know why people with special needs children have large vehicles. Ugh.
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But just in case you think I'm complaining, let me announce this alongside of Sophia: Ira's still here!
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Our mornings and evenings are chaotic. Ira needs quite a bit of our attention during those times. With meds to give, trach ties to change, feeding bags to switch, baths to give, throw up to clean up, and machines to maintain we can find ourselves immersed in Ira's world. And it's all very stressful.
-------------------------
Ira is still on the same meds he's been on since his NICU days: Viagra, Lasix, Prevacid. Along with those, Ira's on three controlled substances: methadone, ativan, phenobarbital and two other diuretics. This past week, we've been tapering off the methadone and ativan. Today is his last day on those two meds. Ira's not doing well with the wean. He's so dependent on them. Read any account of a drug addict coming off his/her drugs and that's a glimpse into Ira's world. He shakes. He shakes when he sleeps. He sweats. He throws-up constantly. And he's unhappy.
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Ira's been out of the house twice since being home. I can't describe to you how much stuff has to accompany Ira when he leaves the home. Someday, I'll get someone to take a picture of Laura, Ira and me as we head out. I now know why people with special needs children have large vehicles. Ugh.
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But just in case you think I'm complaining, let me announce this alongside of Sophia: Ira's still here!
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posted by jch at
1:45 PM
7 Comments:
What a great feeling it must be to fall asleep at night with your entire family under one roof. Still praying for Ira!
Tell Sophia that on THIS side of the internet, we're all checking in and whooping, "Ira's still there! YAY!! Ira's still there!"
:)
Praise God! Hooray, Ira's still home!
Praying for the adustments everyone in the family is making concerning Ira's home care.
I think it is bad getting out of the house with all of the "gear" for 2 healthy kids, I can't imagine what it would be like to need all the extra stuff for Ira - where do you put it?!!
We will continue to pray for Sophia as well, with all of this transition. I think of her often and pray that she is able to glean love and concern and positive attitudes from watching her little brother perservere and struggle for every moment of his life. May you know the right words to comfort, discipline and love your little girl.
Amazing and beautiful how Ira and Sophia have bonded.
SO glad Ira is still home!!!! Just curious - why do they have him on Viagra??? (Must have missed that post from back in the NICU days - sorry!) Glad again that he's home and hope the meds taper down soon!
Ginger, Ira's on Viagra because it "opens up blood vessels" and eases Ira's high blood pressure somewhat. Amazing, isn't it?
Mom/Gram/Glo
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