Guest guest Posted June 17, 1999 Report Share Posted June 17, 1999 Congratulations! Anytime I hear something like this, it gives me hope for my own daughter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 1999 Report Share Posted June 17, 1999 I just got word from the pediatrician that Aubrie can have her Gtube removed!!!!!! I'm waiting to make the appt with the surgeon, but it should be in July. Yahoo!!! I was hoping for removal as a Christmas gift. This is so much sooner than I'd expected. The bummer part of our visit is that one of her PE tubes has fallen out. She's got an ABR scheduled July 13 to try to figure out her hearing once and for all. Now that will be delayed until we can get the tube situation figured out. I assume they'll want to replace it. The complication with the Gtube is that we have her Pediasure covered by Div of Specialized Care for Children as long as she has a tube. When the tube is gone, they can no longer cover it. So now I've got to plead with the insurance company to cover it. Aubrie had her yearly reeval for nursing services and still qualifies for more than I thought she would. Right now we use a nursing agency at a high pay rate so our hours are limited. If I can find a personal assistant at a lower rate, we could have many more hours. Of course, the Gtube removal may lower the hours she's entitled to... Anyway, I am hoping to find a wonderful person who will be like an intervenor. Someone who will be commited to learning sign and following all of Aubrie's therapies and who will interact with her each day while I get my household stuff done, have time for myself, and perhaps even work parttime in the fall. I may be dreaming... but maybe it'll work out. I'll certainly let you know! Michele mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Michele, That is great! Christmas in July! I know you've been wanting this for sometime, so good for you { & her!} I'll be glad when they get her hearing all settled once and for all - esp if it is a bigger loss than first anticipated. She doesn't have aids yet, right? Good luck with the Pediasure and the nursing! That must be so awesome to have some help like that. I hope you can find a cheaper, yet still good assistant. Keep us posted! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >I just got word from the pediatrician that Aubrie can have her Gtube >removed!!!!!! I'm waiting to make the appt with the surgeon, but it >should be in July. Yahoo!!! I was hoping for removal as a Christmas >gift. This is so much sooner than I'd expected. > >The bummer part of our visit is that one of her PE tubes has fallen >out. She's got an ABR scheduled July 13 to try to figure out her >hearing once and for all. Now that will be delayed until we can get the >tube situation figured out. I assume they'll want to replace it. > >The complication with the Gtube is that we have her Pediasure covered by >Div of Specialized Care for Children as long as she has a tube. When >the tube is gone, they can no longer cover it. So now I've got to plead >with the insurance company to cover it. > >Aubrie had her yearly reeval for nursing services and still qualifies >for more than I thought she would. Right now we use a nursing agency at >a high pay rate so our hours are limited. If I can find a personal >assistant at a lower rate, we could have many more hours. Of course, >the Gtube removal may lower the hours she's entitled to... Anyway, I am >hoping to find a wonderful person who will be like an intervenor. >Someone who will be commited to learning sign and following all of >Aubrie's therapies and who will interact with her each day while I get >my household stuff done, have time for myself, and perhaps even work >parttime in the fall. I may be dreaming... but maybe it'll work out. >I'll certainly let you know! > >Michele >mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL >westml@... > > >------------------------------------------------------------------------ >Got an opinion? >http://www.onelist.com >Make it count! Sign up for the ONElist Weekly Survey now. >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Michele-- Congratulations on the G tube removal! How exciting to see the end of something. Hope you can get the insurance to help with the Pediasure. Those tubes can be frustrating. We had to wait for Josh's second ABR until they put the tubes in and it was very frustrating. One good thing though was that they were able to do the ABR that same hour while he was under the anestitia. We didn't have to go through that whole thing of trying to get him to sleep through it or going under anestitia just for an ABR. If they do replace the tubes tell them you want the ABR done RIGHT there after they get it in! I think the whole thing with the tubes and the ABR was about 20 minutes. I hope you can find a great assistant!!!! We're thinking of you! mom to (4 1/2 mo.) and (2 yrs.) Michele Westmaas wrote: > > > I just got word from the pediatrician that Aubrie can have her Gtube > removed!!!!!! I'm waiting to make the appt with the surgeon, but it > should be in July. Yahoo!!! I was hoping for removal as a Christmas > gift. This is so much sooner than I'd expected. > > The bummer part of our visit is that one of her PE tubes has fallen > out. She's got an ABR scheduled July 13 to try to figure out her > hearing once and for all. Now that will be delayed until we can get the > tube situation figured out. I assume they'll want to replace it. > > The complication with the Gtube is that we have her Pediasure covered by > Div of Specialized Care for Children as long as she has a tube. When > the tube is gone, they can no longer cover it. So now I've got to plead > with the insurance company to cover it. > > Aubrie had her yearly reeval for nursing services and still qualifies > for more than I thought she would. Right now we use a nursing agency at > a high pay rate so our hours are limited. If I can find a personal > assistant at a lower rate, we could have many more hours. Of course, > the Gtube removal may lower the hours she's entitled to... Anyway, I am > hoping to find a wonderful person who will be like an intervenor. > Someone who will be commited to learning sign and following all of > Aubrie's therapies and who will interact with her each day while I get > my household stuff done, have time for myself, and perhaps even work > parttime in the fall. I may be dreaming... but maybe it'll work out. > I'll certainly let you know! > > Michele > mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL > westml@... > > ------------------------------------------------------------------------ > Got an opinion? > http://www.onelist.com > Make it count! Sign up for the ONElist Weekly Survey now. > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Michele, I'm so pleased about Aubrie's g-tube and your early Christmas pressie. It's so good that she is eating. BTW Jack is like a new man since he got the peg(g-tube). He has more energy and is much happier than he has been in ages. His bowels are also much improved and he is no longer having colicky pains even though he is taking large doses of laxatives. At last I feel as if we are actually getting somewhere!! Elaine mum to Elise(7yrs) & Jack(23mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Elaine- I am so thrilled to hear that Jack is improving with the peg!!!!! It's been so long coming for you guys! I am truly happy for you both :-) Michele mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Elaine, Hooray for Jack! I'm so glad the g tube is helping. I imagine it was a hard decision for you, but I sure bet you're glad now that you can see the positive-ness {is that a word??!?} of it! Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JMurraybel@... > >Michele, >I'm so pleased about Aubrie's g-tube and your early Christmas pressie. It's >so good that she is eating. >BTW Jack is like a new man since he got the peg(g-tube). He has more energy >and is much happier than he has been in ages. His bowels are also much >improved and he is no longer having colicky pains even though he is taking >large doses of laxatives. At last I feel as if we are actually getting >somewhere!! > >Elaine mum to Elise(7yrs) & Jack(23mths) CHaRGE >Dumfries,Scotland > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 HURRAY! HURRAY! HURRAY! WAY TO GO AUBRIE!!! Michele, Aubrie has come so far this year. It's hard to believe she is the same child we first got to know Spring '98! I remember your struggle w/ the ng tube, reflux and whether or not to get the g-tube. It sure has been worth it to see how far she has come. I am so proud and happy for you, Aubrie and the whole family. She is certainly blowing all those projections out of the water and it is all because of you, Michele and the hard work you have done. Do you qualify for WIC? They can also give out vouchers for Pediasure--up to 100 cans/month last time I checked. Of course, you'll need an Rx from the doctor. What about using an instant breakfast (like Carnation) w/ whole milk? It's cheeper and full of nutrition and calories. You can also add a liquid multivitamin to her diet if you are unsure she is getting enough vitamins if you have to cut out the Pediasure. Good luck! Good Job!!! HIP, HIP HURRAY!!!! (Destiny 6 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
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