Guest guest Posted August 11, 2003 Report Share Posted August 11, 2003 Welcome Margaret! I am glad that finally has a dx and is now blossoming. He sounds preciuos. I live in central USA (Ohio) and have a grand daughter named Abby wcf. Abby is 19 months old. Abby was diagnosed at 3 months due to asperation induced pnuemonia. At 6 months, Abby had surgery to remove one lobe of her lung. She has been doing really well ever since. I hope that you enjoy this group. Everyone is supportive and many are really informative. Gale > Hi! My name is Margaret and I'm Mum to who is 4 and has CF, as well > as a wicked sense of humour and an answer for everything!! We live with > 's dad, Simon, and a cat called in Glasgow, Scotland. > > was dx'd last year at the age of 3.5 despite having been trotted to > every consultant we could get access to since he was born - asthma, ENT, > allergy, etc -. We had an incredibly hard 3.5 years prior to dx so we had > mixed emotions when we discovered that he had CF. We were obviously appalled > and frightened but were amazed that within days the pale, exhausted, cranky > little boy we knew was blossoming into a bright, energetic and funny little > person - friends came to visit us in hopsital and were so surprised to see > him jumping up and down on the bed when they had hardly ever seen him run or > jump around. > > We now do physio twice a day, nebuliser and inhaler twice a day, > antibiotics, vitamins, enzymes and 2-monthly IV which we do at home. > has been showing pseudomonas since dx and is now on zithromax - after a long > series of discussions with very hesitant Drs. He hates the long line > insertion and always seems to encounter problems so he will be getting a > portacath over the next few months - I will be picking your brains very soon > about ports for small people!! 's late dx has obviously taken a toll > on his body but at the moment he is happier and healthier than he has ever > been - he has sprouted up, is piling on the pounds (favourite dishes being > beefburgers and chips and pancakes, bacon and maple syrup!) and doesn't look > as though there is anything wrong with him. I am also piling on the pounds > and have about a tenth of the energy he has! > > I have been a member of Cystic-l mailing list since 's dx and have > found it really helpful and made some good friends there - tho recent flames > there have prompted me to join this group. I really look forward to getting > to know you, learning more about CF and helping other CF parents if I can. > > Best wishes > > Margaret - Mum of 4yo wcf > > > Quote Link to comment Share on other sites More sharing options...
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