Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 OK, Carla--not sure where you're from. You'd be surprised how wonderful the vest company is (I'm referring to ABI, here). Randall can give you lots of great advice and help here. They work VERY hard to get insurance companies to cover the vest. Yes, I know how it feels to be so upset when things aren't going as well as you'd like them to. BUT, it sounds to me like this is nothing you can't overcome and recover from again. Getting his weight up will help to also get his height up, and will also help him to be healthier lung-wise, as he will have more energy and will be more physically active, which is very important. How old is Dallas? Cody got his vest when he was 3, and I know for a fact he was nowhere near 22 " when he got his--I'm guessing he was closer to about 18 " or 19 " . He is now 7-1/2, and his chest is just under 23 " . Carlee, a girl with CF that we know (she is now 11), got her first one when she was 2. In fact, she is on the home page for the ThAirapy vest at www.abi.com --she has been on the cover of 3 of their brochures. So, I would call the company (1-) and ask for advice. They are great! Best of luck to you!!!! S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) worst clinic visit > Yesterday was Dallas' worst clinic visit ever. I know it wasn't > totally bad, but we've kept him really healthy for 2 years ( actually > we've jsut been darn lucky) and it was kind of depressing. > He's lost weight, hasn't grown in height, and his o2 levels were > down. He usually runs at about 98 or 99% and he was at 91. I > know..not bad by alot of cf patients standards..but it sort of seems > like it will be a downward battle. > Does anyone else feel this bad when their cf child goes from healthy > to typical CF case? > the weight I'm not too concerned about. If anyone knows how to put > weight on, it's me! lol > I've started giving him whipping cream in his milk, alot more whole > fat dairy products, fattier cuts of meat, etc. but how do you make a > kid grow????? > I was also told yesterday that once he reaches a 22 " chest and I have > $16,000 US to spend, we can buy him a vest. > I know our insurance company would never cover that. I guess it'll > be another bank loan..but I'm sure it'd be worth it, hearing from all > of you how much you like yours. > Anyways, that's all. > Hope everyone has a happy healthy day! > Carla > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 We're from Manitoba, Canada. The reason I said our insurance won't cover it, is because Canadian insurance companies don't have to cover primary care. All they cover is things like dental and meds, up to the point where government pays for it. They really aren't concerned about long term savings. Dallas is 2 1/2. I wondered about the 22 " thing that the pt told me. I thought lots of kids had the vest before then. I'm going to start checking it out though. They do have one at the clinic that we can try. Thanks, Carla > OK, Carla--not sure where you're from. You'd be surprised how wonderful the > vest company is (I'm referring to ABI, here). Randall can give you > lots of great advice and help here. They work VERY hard to get insurance > companies to cover the vest. > > Yes, I know how it feels to be so upset when things aren't going as well as > you'd like them to. BUT, it sounds to me like this is nothing you can't > overcome and recover from again. Getting his weight up will help to also > get his height up, and will also help him to be healthier lung- wise, as he > will have more energy and will be more physically active, which is very > important. > > How old is Dallas? Cody got his vest when he was 3, and I know for a fact > he was nowhere near 22 " when he got his--I'm guessing he was closer to about > 18 " or 19 " . He is now 7-1/2, and his chest is just under 23 " . Carlee, a > girl with CF that we know (she is now 11), got her first one when she was 2. > In fact, she is on the home page for the ThAirapy vest at www.abi.com --she > has been on the cover of 3 of their brochures. So, I would call the company > (1-) and ask for advice. They are great! > > Best of luck to you!!!! > S., mom to Cody (7, pwcf), DJ (8, nocf), and a (14, nocf) > > worst clinic visit > > > > Yesterday was Dallas' worst clinic visit ever. I know it wasn't > > totally bad, but we've kept him really healthy for 2 years ( actually > > we've jsut been darn lucky) and it was kind of depressing. > > He's lost weight, hasn't grown in height, and his o2 levels were > > down. He usually runs at about 98 or 99% and he was at 91. I > > know..not bad by alot of cf patients standards..but it sort of seems > > like it will be a downward battle. > > Does anyone else feel this bad when their cf child goes from healthy > > to typical CF case? > > the weight I'm not too concerned about. If anyone knows how to put > > weight on, it's me! lol > > I've started giving him whipping cream in his milk, alot more whole > > fat dairy products, fattier cuts of meat, etc. but how do you make a > > kid grow????? > > I was also told yesterday that once he reaches a 22 " chest and I have > > $16,000 US to spend, we can buy him a vest. > > I know our insurance company would never cover that. I guess it'll > > be another bank loan..but I'm sure it'd be worth it, hearing from all > > of you how much you like yours. > > Anyways, that's all. > > Hope everyone has a happy healthy day! > > Carla > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 Hi Carla, I can definately feel for you. Emma had her worst clinic visit ever yesterday as well. She hasn't lost weight in 2 years since she was started on an NG/G tube. Well, she has had a non-stop puke fest ever since my husband became the primary care giver. It took a while but it finally seems to be under control. They had to put her on antibiotics in order to stop the vomiting. So ... she lost weight this visit. My husband was the one who took her so he doesn't even know how much weight she lost. We were hoping to spend this summer focusing on getting her to chew her foods and eat regular food and it's just not happening. At least, she isn't having any lung issues that we know of. So now we are back to putting massive amounts of fat in everything, at least we know how to do the drill. Have a good one, maria - mom to Emma 3 years w/cf and Isabelle almost 5 wo/cf ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 I grew up in a tiny town about 60 miles south east of . Now we live on the west shore of Lake Manitoba, about 45 miles north of Portage la Prairie. My sister lived in Fargo for a few years. I always liked it when we visited. She went to head State. Carla > Where in Manitoba? I grew up in Munich, ND, which is only about 15 miles > south of the border, and we often went up to Winkler, Winnepeg, , > Crystal City, and several others. It's a beautiful area! We plan on going > up there fishing hopefully next summer. Right now we're living in Fargo, > ND, and love it here. > Quote Link to comment Share on other sites More sharing options...
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