Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 We are back into routine and loving it! Olivia attended a half day at school yesterday, and did real well. We decided to go longer today, and so far, so good. She will no longer attend gym or recess and I have decided to limit her activity a bit. Not that much, because staying active for good lung function is a must, but no more sledding, jumping, etc...We are going to contnue breathing exersizes on the bi-pap, and I think she wants to start playing the flute, too. That will be good for her lungs..She expressed feeling very alone on her scoliosis journey while we were in the hospital this last time, so I am ~really~ trying to get the listserve for kids w/ scoli (7 -12 yrs old) up soon. I know this would be a great avenue for her and so many others to express how they are feeling, and what they are going through, with other kids going through similar scoliosis challenges. I am playing catch-up again, so if I have neglected answering any e-mails/calls, please forgive and resend. I am back and more determined than I have ever been to make Early Treatment available to all who need it. I am so grateful to all of you who have helped ISOP, and to all of you who have helped me personally. This has not been an easy road and knowing that I have you to rely on during difficult times, has truly gotten me through the last few weeks. Love, HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 , Thank you for keeping us updated. I am continuing to keep you both in my thoughts these days. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 glad to hear Olivia is feeling better. Give her a great big hug for us and tell her she is so strong. Give me a call so we can catch up and maybe go have lunch soon. We have Saturdays off so they are always good. Talk with you soon. Rochelle > > We are back into routine and loving it! Olivia attended a half day at > school yesterday, and did real well. We decided to go longer today, and > so far, so good. She will no longer attend gym or recess and I have > decided to limit her activity a bit. Not that much, because staying > active for good lung function is a must, but no more sledding, jumping, > etc...We are going to contnue breathing exersizes on the bi-pap, and I > think she wants to start playing the flute, too. That will be good for > her lungs..She expressed feeling very alone on her scoliosis journey while > we were in the hospital this last time, so I am ~really~ trying to get the > listserve for kids w/ scoli (7 -12 yrs old) up soon. I know this would be > a great avenue for her and so many others to express how they are feeling, > and what they are going through, with other kids going through similar > scoliosis challenges. > I am playing catch-up again, so if I have neglected answering any > e-mails/calls, please forgive and resend. I am back and more determined > than I have ever been to make Early Treatment available to all who need > it. I am so grateful to all of you who have helped ISOP, and to all of > you who have helped me personally. This has not been an easy road and > knowing that I have you to rely on during difficult times, has truly > gotten me through the last few weeks. > Love, > HRH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2008 Report Share Posted February 16, 2008 So glad you have a plan, and a date. You will be in our thoughts and prayers. Say hello to Kylie and for me and my family. ~ & Re: Olivia update Forgot to mention that Olivias current VEPTR (dual hybrid attached to iliac crests) will be completely removed. She will recieve the VEPTR II, attached to the lumbar spine. If spontaneous fusion occurs, it will be in the lumbar area in only 2 small segments, so its not as big of a concern as it always has been (to me). Hopefully, this new hardware will help prevent future rib erosion and her gait will improve. While she didnt have a significant " stooping " issue with her current type of VEPTR, it was always a challenge for her to hold herself upright, especially when tired. She is 10 years old, so we have made it a long way and she will continue to do well. As always, thanks for the prayers, thoughts, and well wishes. HRH > Okay, heres the plan; > Primary cant get Liv on the surgery schedule until March 10th. I dont > feel comfortable being all the way out here in Denver, so we will head out > to SLC sometime next week. If something should happen to Olivia(rib > erosion on the other side, infection, skin breakthrough, etc...)while we > are in Denver, we would be 8 hrs away from the hospitals in SLC, and 1 hr > by plane, weather pending. I doubt anything will happen, but I would feel > better if we were only 20 mins from the hospital. Not to mention, if > there is a cancellation, we might be able to get this done, sooner. We > will stay at my brothers house mostly, but will probably hang out with > & Kylie quite a bit, too. > I will be available by phone and internet, should anyone need anything > from ISOP. > Wish us luck and I'll post when we get there! > HRH > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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