Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Dear Annette, Your email brought a smile to my face today. I am so glad that Allissa was out having a good time. These are the things that really make my day...thanks for sharing!!! Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 HI Kirstie, Thanks for sharing and for the support. Your children have been through so much and yet you describe them as so well adjusted. You sound like you have done a wonderful job with them. Again, thanks for the kind words!! Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Dear Autumn: She spent all of today on the trampoline and she would stop when she was short of breathe and start again, the biggest hoot is watching her golden retriever bounce with her on the trampoline, she loves it!!!!!!!!! We think of the boys often and hope they are improving, your letter yesterday was very important thank you, God BLess, annette and alissa >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: to all >Date: Sun, 30 Jan 2000 17:19:58 EST > > >Dear Annette, > >Your email brought a smile to my face today. I am so glad that Allissa was >out having a good time. These are the things that really make my >day...thanks for sharing!!! > >Autumn ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 From Kirstie, Mum to Stef, Cam)CVID), Isaac and (CVID) Autumn, This is much the way I treat my children, and I feel they are growing up to be very well balanced despite any health problems they are having. I don't jump at every sniffle, and do take a " wait and see attitude " as much as possible. They miss school as little as possible, is starting Jazz ballet this year, Cam has just taken up golf and is keen to play rugby this year. They go to school camps and generally live as normal a life as possible. Neither of them would consider themselves as being sick unless they currently have an infection that is making them feel unwell. We took three years to agree to Cam having invasive testing and subsequently surgery for his obstructive sleep apnoea as it was no longer life threatening, it did affect his quality of life but it was not going to kill him - we saw four specialists before making that decision. My doctors know that if I phone them they need to get back to me quickly, because they only hear from me when I am really concerned about something and have tried all my available options. One of our immunologists paid me what I feel was a great compliment when she told our nurse, who is a close friend of mine, that she knew she had to act when I was worried because I didn't make a fuss unless it was really important. There has to be a very good reason, which is going to impact positively on Cam or 's quality of life before I will agree to any invasive testing - I won't test to find out the name of any condition, unless knowing that name will make a positive difference to treatment options. Fortunately my Pediatrician and Immunologist are of the same opinion. Someone said recently - sorry I haven't been back to check who it was - that they didn't agree with parents accessing ports because if the child developed an infection the parent could be blamed, even accused of deliberately causing an infection. In my case I certainly don't agree. I have done all Cam's port accesses since he was 2, he is now almost 13 - he has never had an infection from his port. , on the other hand has had several life-threatening episodes of sepsis, some attributed to the port, but she has not had a single port infection when I have been accessing her port. I have control over my own sterile technique and know that I do it well, however I can't guarantee that a nurse will not unconsciously push her hair back or touch something else - it is not her child, so she does not have the same sense of responsibility that I do. - just my opinion. Sorry that this has turned into a novel, I hope no-one is offended by anything I have said, this is the way we try to live our lives and is not meant to suggest to anyone else that they are doing anything wrong - we all have to do our best, and that is often different to what someone else would choose. Love to all Kirstie Re: to all > From: Autti@... > > > > Dear , > > Thank you for your last email...it was truly wonderful. You worded it so > gracefully. I guess I am a bit passionate about this subject and it > sometimes shows, lol. > > In the poem " Welcome to Holland, " Pearl, compares a mothers story of > what it is like to live with a handicapped child....she explains what it is > like planning your whole life to go to Italy...you plan for it and prepare > for it but when the day arrives your plane lands in Holland. All your > friends are in Italy, where you had planned to be....and the pain of that is > very real. But Holland is a beautiful place and you learn that it is not so > bad...my point with all this mumble jumble....I want my sons to grow up with > a good emotional balance that is, being little boys with light brown hair, > brown eyes, can draw, can swim, tell jokes, and who refers to his PID as > " yeah, I have that...I get IVIG and sometimes get sick, and that's that " and > accept that and be OK with that, like accepting going to Holland verses > Italy. We never allow people to refer to him as the boy with the " PID " or > the " sickly one " or the one with the rare disease...I always correct that. > We do not put all our focus and attention on the PID, we address it as we > need to. Part of how we are preparing him for that is by not " keeping him > thinking that he is always SICK " .......we address the day to day stuff that > we need to and have to and we can let some of the other things go (that can > be left alone). We do not run after every little complaint or try to address > every sniffle, or complaint...some things are normal to have and when it > comes down to it we ask ourselves what is going to be accomplished by > agreeing to this test and that test. I for one, was told 3 years ago that > needed the Nissen...trust me when I say, he needed it when he had it. I > researched and and explored our options before jumping on the band wagon and > agreeing to do it. I was the same way with IVIG...I think I went for more > opinions to be convinced as I was so against it...I needed to know with > certainty that my son needed such a treatment. I have gained much respect > from our doctors for being the way that I am. They know that when I call, > there is a real medical problem and always get right back with me. They have > learned over the years that I will always be my child's best advocate. > Anesthesia and sedation are so risky and Mark's doctor and I have discussed > this subject so many times...as to how many parents will have elective > procedures without weight the risks of the anesthesia or a side effect of a > medication, etc. Look at the mis-use of IVIG, there is a real problem there. > I believe it is healthier to learn to live with some things and treat the > things that really need attention to. I don't chase down every diagnosis. I > certainly do not want either of my children to grow up and know nothing but > illness, medical tests, drug after drug, blood draw after blood draw. They > are not an ILLNESS or A PID or a DISEASE...they are children..who can draw, > and laugh and bring many smiles to those who know them. I want them to be > well grounded so if and when a difficult time comes in their life with their > health, they can address it and deal with it and not allow it to consume them > or become them. This type of thinking I believe (as does our doctor) will > keep them healthier in the long run. Again, thanks for sharing your thoughts. > > Autumn mom to Mark and > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 From Kirstie - Mum to Stef, Cam(CVID), Isaac and (CVID) Thanks Autumn - I am very proud of the way my children are growing up, they have every right to feel very angry with the world and to feel very sorry for themselves, but they never do. I am sure your boys will have the same positive attitude because of your guidance. Love to all Kirstie Re: to all > From: Autti@... > > > > HI Kirstie, > > Thanks for sharing and for the support. Your children have been through so > much and yet you describe them as so well adjusted. You sound like you have > done a wonderful job with them. Again, thanks for the kind words!! > > Autumn > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Dear Annette, Thanks for keeping our boys in your thoughts..glad to hear you had such a wonderful day. Talk to you soon, Autumn Quote Link to comment Share on other sites More sharing options...
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