Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Katy - Congrats on getting approval. I have heard that is the hardest part! Please let us know what answers you get about GH for non-GHT kids. Also, I loved your email about the uniqueness of all members of a family. I also realized when people started asking me if my kids were twins, that if I looked at them, I would think the same thing!!! I just answer no, they are 14 months apart, and is the older. If people do continue to ask questions about 's petiteness, and they seem honestly interested and caring, I give a simple answer (or if not, I change the subject). But I also must say that since doesn't visually " look " different from other kids besides kids, I have no idea what friends have gone through whose child had a cleft palate -- the stares, the rudeness, etc. But you are right - parent support groups are for the venting, the crying, and the negative (and the positive, too, of course). Kids just soak up what we say and the vibes we give off. Steve and I thank god we found this email site. Before, we only had each other!!!! And that got old! Now we can read emails, and see that a) others feel the same things; and there is always situations worse than ours. How do we balance it all with the kids? The need to make their disorder not " taboo " but also not make it the central part of the family. That's a hard balancing act! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Katy, I think you summed it up all so well,concerning how to respond people's questions about our children.I really do think that most who ask are well intentioned.And for those who are not,don't lower yourself to their level.Just my 2 cents worth. Grandma Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Katy, two more words- THANK YOU!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Katy, Two words -- thank you. Judy (Matt 4) Misc > > > Hi Everyone, > I hope you are having a relaxing weekend! Here are some miscellaneous topics > I've been thinking about. > > 1. First, I wanted to announce that finally got approved for GHT from > MEDCO. We visit Dr. H. on 3/21 to get his bone age, weight/height checked, and > then training on administering the med. Ken, and others who wonder whether to > give GHT for non-GHD kids...I'm going to go in and ask Dr. H. all the questions > we have been discussing here (e.g. final adult height, sterility risk, diabetes > risk, predicting height, etc....) before we make the final " plunge " . I also > found some great email-chat on HGF-Peds on techniques to start GHT with a young > toddler...I'll put them together and post here. > > 2. Did any of you catch Good Morning America the other morning? I'm not going > to do it justice here, because I had 2 toddlers running around while watching > it, but: Bottom line: Deaf parents refuse to give their child cochlear implants > (will allow child to hear) because in their view, the deaf world is a > " beautiful " world. Uncle is calling them abusers...Documentary just made about > the family. It was absolutely fascinating to listen to this father make his very > impassioned argument that he sees no reason to alter the child's " deaf " > experience just to fit society's norms. He talks about the beauty of the way > deaf people express themselves, their range of emotions, the fact that they need > to use their facial expressions much more vividly. Anyway, you can imagine the > outcry over his decision; I know we can't compare shortness with deafness, but > the beauty of the story is the focus it had on the parents strength and > acceptance. If I can get a hold of the name of the documentary, I will. I know > that I learned a lot by " listening " to the father's opinions. > > 3. Regarding people who ask questions about our small children. Every day I > get at least 2 people asking me if and (18 months apart) are > twins. I realize that my approach and reactions will be soaked up by my boys > like sponges. So, I smile and say, " No, actually, is my big boy. He is 3. > is 18 months " . And, I leave it at that. Why get mad at a perfectly > logical question? If they were twins, I would have smiled and said, " yes! " . > So, is the question offensive, or are we being defensive!? I also always follow > it up by a comment, " is so full of energy and curiosity. He keeps us busy. > bla blah... " Just full of positive comments. And, why should other people > " know " about the daily struggles we go through? If we define ourselves and our > families by the troubles that we go through: the late nights, the struggles > feeding, the medical problems, etc..then I think I would run the danger of > always wearing on my face the attitude of " If you only knew how much we suffer, > you ignorant person! " . I think it helps me to realize that it is more important > to define ourselves by what we are: a family unit made up of unique people who > will have unique futures and contribute in unique ways. Sure, the path to that > uniqueness is varied, but that is what defines life. I also realize that those > so-called insensitive people who inquire about 's size just haven't had a > lot of experience with small kids. Also, each one of them is dealing with their > own issues that I don't know about: maybe a relative dying, someone in a nursing > home, maybe a child who is ill, a job that is in jeopardy, a marriage problem, > infertility, maybe just a rushed and harried day, etc...WE all don't walk around > listing our issues on a t-shirt. So, I find it helps to give people the benefit > of the doubt. Of course, I would never tolerate mean-sprited teasing or cruelty, > but curiosity? Hey, that is human nature! > > Enough of my Saturday morning ramblings! > > Katy > Mom to , RSS, 3 years, 28 pounds, Periactin, Zantac > and > , 20 months, 29 pounds > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/0/_/229381/_/952786456/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Katy, Well, you never know, I may be there until 3:00 p.m. from the stories I've heard, but lets hope not. Cheryl katy badt-frissora wrote: > > > Hi Cheryl, > > Thanks for your email...sometimes I forget that parents are dealing with far > more than eating or growth problems. I certainly was fascinated by the > technology of the implants. I think if it were our child it would be hard to > ignore the opportunity... > > Our Dr.H. appointment isn't until 3 in the afternoon (:-(), so we won't be able > to meet (If we do meet, it would mean that you had to wait there all day! I hope > that doesn't happen to you! :-)). > > Lots of luck to you.....I'll be curious to hear what you think of your visit. > > Katy > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > http://click./1/975/0/_/229381/_/952789908/ > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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