Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 , I am glad 's prognosis gives you hope for Jillie. He really is a miracle child. He was on a ventilator for 2 months, on CPAP for another month, and then on oxygen for 2.5 years continuously. He went back on oxygen every time he got sick after that until he was about 4 years old. We had numerous hospital admissions with him, but I think the last time he was hospitalized was when he was 3.5 years old. There have been some close calls though over the years, including a few weeks ago when he probably should have been in the hospital. As far as the feeding therapy goes, we had speech therapy at home until he was 5 years old, anywhere from 3 - 6 times per week. This consumed our whole life, because he was also getting PT & OT 2-3 times per week each at home. When he was almost 3 years old, he went to a preschool for special needs kids and also received therapy there 2 - 3 times per week. Two summers ago when was 8.5 years old, we took him to a 2-week feeding program in Charlottesville, Virginia. The program is at Kluge Rehab. Center & the therapist in charge of the program is wonderful. This is a 2-week outpatient program, but you are there for 8 - 9 hours per day. The child gets feeding therapy 4-5 times per day as well as OT, recreational therapy, and PT, if needed. The OT & recreational therapy are also centered around eating & sensory tasks, as most of these children have sensory integration problems (touching gooey textures, etc.). entered this program 90% tube-fed and came out of this program receiving only 20% of his calories via g-tube. However, we had some behavioral setbacks a few months later and he went back to not eating too much again. He is at a point now where he has the ability to eat (though he chews and swallows a bit abnomally), but he still prefers not to eat by mouth most of the time. I don't argue with him too much anymore. I figure that we have done all we can possibly do for him, and ultimately, it is going to be his decision to eat enough to get rid of the tube, which he has had his whole life. When he is a teenager, I am hoping he will have more incentive. As far as all the hospital admissions go, hang in there. It is rough when they are younger, but eases up as they get older. As Jillie gets older, her lungs will continue getting stronger and you won't see as many colds turning into pneumonia! Knocking on wood, has not gotten sick anymorw than the average kid since entering kindergarten. Before that, he was constantly sick! Look forward to meeting you at the convention! Kim C. > Hi Kim and Jodi, > Have been following your posts on your boys who seem to have followed > a similar path to my daughter Jillie. She is 26 months and was in > hospital 10 times in the first year and still requires nursing care > for oxygen need etc. > Jodi, I know your son is a similar age to Jillie. I think you are the > one that J told me about a few months ago when I spoke to her. > She said there were only a few RSS kids who had had significant lung > problems because of aspiration pneumonias. I hope we get a chance to > chat at convention. You have a handsome boy! > Kim, I am heartened by the fact that your son is no longer on oxygen > and is doing better. How old was he when he no longer needed oxygen?? > You mentionned he had years of feeding therapy. How does he eat now? > Jillie got a GT and tongue lip adhesion at 3 months, several GJT's > which all intussusscepted (obstructed her jejunum), a fundo and > central line placement at 7.5 months and reversal of tongue lip > adhesion at 11.5 months. She had many ICU admissions with pneumonias. > I felt I should just give up normalcy and move into the hospital. > This year has been better but her speech, feeding, occupational and > physical therapies are pretty gruelling. However, anything is better > than being in the hospital. > Hope to see you both next week! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Hi Kim, I saw your post and I wanted to respond. My son Braeden spent most of his first year in the hospital for aspiration pneumonia. We were told by his pulmonology team last fall that he " Was skating on thin ice " and they really didn't think he would make it through the winter flu season but, he did! He had a few hospitilazations/ICU admissions but, he is doing better. He hasn't been in the hospital since March. Although we never had to have him on oxygen, we did the steroids and breathing treatments. He is having a swallow study next week to check if we can start giving him fluids by mouth and that he doesen't aspirate into his lungs anymore. He is also going through the weekly physical therapy and feeding therapy appointments along with all of his doctor appointments. It can be overwhelming. I just wanted you to know your not alone. Please feel free to email me anytime at cspendlet@... Take Care, Saundra Mom to Braeden (RSS) and Delaney 21 month twins > > Hi Kim and Jodi, > > Have been following your posts on your boys who seem to have followed > > a similar path to my daughter Jillie. She is 26 months and was in > > hospital 10 times in the first year and still requires nursing care > > for oxygen need etc. > > Jodi, I know your son is a similar age to Jillie. I think you are the > > one that J told me about a few months ago when I spoke to her. > > She said there were only a few RSS kids who had had significant lung > > problems because of aspiration pneumonias. I hope we get a chance to > > chat at convention. You have a handsome boy! > > Kim, I am heartened by the fact that your son is no longer on oxygen > > and is doing better. How old was he when he no longer needed oxygen?? > > You mentionned he had years of feeding therapy. How does he eat now? > > Jillie got a GT and tongue lip adhesion at 3 months, several GJT's > > which all intussusscepted (obstructed her jejunum), a fundo and > > central line placement at 7.5 months and reversal of tongue lip > > adhesion at 11.5 months. She had many ICU admissions with pneumonias. > > I felt I should just give up normalcy and move into the hospital. > > This year has been better but her speech, feeding, occupational and > > physical therapies are pretty gruelling. However, anything is better > > than being in the hospital. > > Hope to see you both next week! > > Quote Link to comment Share on other sites More sharing options...
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