Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 , {{{HUGS}}} My heart goes out to you. Is there anything we can do? Please know that you are in our thoughts and prayers! Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2002 Report Share Posted March 29, 2002 , {{{HUGS}}} My heart goes out to you. Is there anything we can do? Please know that you are in our thoughts and prayers! Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 - never say never. he's young, lungs grow, even smokers can overcome some damage when they quit. So hey maybe our kids can to. Macey has scarring in her lungs but I'm hopeful that she will either learn to compensate or as the lungs expand and grow they will grow over the scarring. It's likely at this point with my husband recently diagnosed that Macey is in for the long haul also. But I look at it this way, we deal with this once a month (use to be every 3 weeks) and as long as we stay on top of things (frequent naps, prophylactic antibiotics, sinus irrigation, etc) she is pretty infection free. So daily we get by. I think of the juvenile diabetes kids who are doing blood sugars 4 and 5 times a day, insulin shots just as often and diet and exercise (I mean STRICT diet and exercise) and I think we came out alot luckier. Some days it's hard to remind myself of this but as she gets older and helps handle her meds and naps and whatnot I know she's aware of what it takes to keep going. Remember, never say never. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory Integration Disorder, Diabetes Insipidus, colonic inertia) http://maceyh.home.att.net / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 I had lung surgery about 2 years ago. They had to staple out the blebs, or air pockets that liked to pop on me. They told me that my lung should be completely normal in a few years. Right now it isn't but they told me with time it will heal itself. -- > - never say never. he's young, lungs grow, even smokers can overcome > some damage when they quit. So hey maybe > our kids can to. Macey has scarring in her lungs but I'm hopeful that she will > either learn to compensate or as the > lungs expand and grow they will grow over the scarring. It's likely at this > point with my husband recently diagnosed > that Macey is in for the long haul also. But I look at it this way, we deal > with this once a month (use to be every 3 > weeks) and as long as we stay on top of things (frequent naps, prophylactic > antibiotics, sinus irrigation, etc) she is > pretty infection free. So daily we get by. I think of the juvenile diabetes > kids who are doing blood sugars 4 and 5 > times a day, insulin shots just as often and diet and exercise (I mean STRICT > diet and exercise) and I think we came out > alot luckier. Some days it's hard to remind myself of this but as she gets > older and helps handle her meds and naps and > whatnot I know she's aware of what it takes to keep going. > > Remember, never say never. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory > Integration Disorder, Diabetes Insipidus, colonic > inertia) > http://maceyh.home.att.net > > / > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the sole > responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2002 Report Share Posted April 1, 2002 Hi , I don't know how old your son is or how long he has been on IVIG, but I can tell you that when IVIgG first came out the patients who were on the IM shots prior to the IV form had serious lung damage. One patient I know who is now in his 40's was on Oxygen at night but because of IVIgG he no longer needs the Oxygen and has not used it in over 10 years. Give the IgG time to work and you may see improvement. The patient I am speaking of incidentally is now married, has two children of his own and yes insurance! So our children can have a future like everyone else, and a new 'normal' that included IVIgG every 3 weeks. Our grief as parents however is chronic. It comes and goes as we let go of the hopes and dreams we had for our children prior to their birth and watch them make their way in this world with a chronic condition. We must get back to being a country that truly cares about the health of all of its citizens not just those who don't use their health care insurance. Take care. lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Jeanine, So, so sorry for the loss of your dear . Sending comforting thoughts and prayers to you and your family. Hugs, Kelley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Jeanine God bless you and your family. I can't imagine what you're going through right now. You are in my thoughts and prayers! Sadness I've lost my dearest half this morning. Jeanine Jeanine's Hummingbird Soap Works Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Sorry to hear that Jeanine! Gabby > > I've lost my dearest half this morning. > > Jeanine > > Jeanine's Hummingbird Soap Works > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Oh Jeanine, I am sorry to hear of your sad news. Words can't express my feelings but just know that you are in my prayers and wrapped in God's love. If there is anything at all that I can help with please let me know. Delores Daisy May Natural So > > I've lost my dearest half this morning. > > Jeanine > > Jeanine's Hummingbird Soap Works > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 I've lost my dearest half this morning. Jeanine Iam so sorry to hear about .I can't even pretend to know what your feeling.My heart goes out to you, may you find peace in the days to follow. Susie Goat Lady Soap Co. Forever Changing Farm Columbus,New York www.goatladysoapco.com From: Murray <jmurray2@...> Subject: RE: Sadness Date: Saturday, April 25, 2009, 11:17 PM Jeanine God bless you and your family. I can't imagine what you're going through right now. You are in my thoughts and prayers! Sadness I've lost my dearest half this morning. Jeanine Jeanine's Hummingbird Soap Works Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Hello Jeanine, I am so sorry to hear about your loss, my thoughts and prayers are with you and your family during this time. Barbara Old Kentucky Candle N Soap Supplies <http://www.shoppalstores.com/oldkentucky> http://www.shoppalstores.com/oldkentucky Sadness I've lost my dearest half this morning. Jeanine Jeanine's Hummingbird Soap Works Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 I'm sooo sorry for the late response as I was out of town. I will be praying for you Jeanine, very sorry that you lost the one you love so much!! Regards Carol Sadness " " < > Date: Friday, April 24, 2009, 11:37 AM I've lost my dearest half this morning. Jeanine Jeanine's Hummingbird Soap Works Quote Link to comment Share on other sites More sharing options...
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