Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Oh, yah. You lock Lillimae in the car for the night and you call ME cruel for sending flying monkeys out. And then you feed her LEFTOVERS! Give me a BREAK., Give me a break, give me a break of that Kit-kat bar! Jim Lily I felt kind of stupid, but I moved my car so I could see it from the window because I was afraid someone would break into my car and steal her. That's almost embarassing to admit. Marta who had to feed her Anita's left over rib meat to make up for abandoning her in the car while I partied at Perkos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 > I felt kind of stupid, but I moved my car so I could see it from the window because I was afraid someone would break into my car and > steal her. That's almost embarassing to admit. > > Marta Thats not stupid. Thats smart. I always park Cassio where I can see him, and he can see me, it makes us both feel better... Sharon in Onyx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 Now wait just a minute there Jim. Marta had Lily in the car not Lillie. I was at a meeting getting things ready to send to the needy instead of being at the support group ( wanting to go to the support group but......) Missed seeing you all and I will be there next month. We're going to Woolgrowers right?? Lillie not Lily DS 4/30/03 341 8/21/03 281 Lily I felt kind of stupid, but I moved my car so I could see it from the window because I was afraid someone would break into my car and steal her. That's almost embarassing to admit. Marta who had to feed her Anita's left over rib meat to make up for abandoning her in the car while I partied at Perkos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2003 Report Share Posted November 12, 2003 In a message dated 11/12/2003 9:41:51 AM Central Standard Time, sonofmosiah@... writes: > give me a break of that Kit-kat bar! > > Jim > > > Isn't it " break me off a piece of that Kit Kat bar?? " in Bama <A HREF= " http://hometown.aol.com/mdl1031/myhomepage/profile.html " > http://hometown.aol.com/mdl1031/myhomepage/profile.html</A> VBG to RNY revision 1996-Failed Rny to Ds revision 12/06/02 Down111lbs!! Thanks to Dr. K! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Steph, So at birth a supine x-ray was taken...then 3 days later another that showed her curve at 85 degrees? Do you have these x-rays? I would strongly recommend getting them copied before they get lost in the mix. (its happened to almost everyone on this list) Its very disappointing that Emans wont do the halo when she is a little older, than follow through with serial corrective casts for optimum correction. Its far less invasive than instrumentation. Olivia too, is using her rib cage as an internal brace....The body does what it can to protect itself...Although, its only a matter of time until the ribs can no longer do this. The curve will always take over, in severe cases. You said "maybe its such a high curve, and its hard for a brace/cast to catch it." -The degree of Lil's most prevent curve would decrease by 50% in a halo. Once her curve was at 40 or 50, an effective cast could be applied.. About the TRP... I didnt realize that you had to consider so many other things in Lil's case. Her case is a perfect example on how all cases of infantile/congenital are inherently different. I think both initial surgeries are very invasive....The difference between the TRP and a subcutaneous rod, is that the expansions on the TRP are on an outpatient basis, and for the sub-rod the expansions arent. Everytime the rod needs adjusting the doc has to go all the way in. Its a full blown operation, anesthesia, etc. Sorry I didnt reply yesterday.. talk soon, HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 > Steph, " Do you have these x-rays? I would strongly > recommend getting them copied before they get lost in the mix. (its happened to > almost everyone on this list) " Did I tell you they lost all but the firt Xray of Nate?? When I took him to Childrens in Cincy, they never came back. Now they cant find them. Luckily, his second set was taken just a month from the first one, so we had a decent set to compare to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Hi ! Glad to hear Lily's hips are doing well. I am glad that Dr. D'Astous was able to communicate with you via e-mail. He is truly a gem. I know that you are worried about Lily's most recent cast, but I am sure she is fine. The jacket is holding her at 14, and her spine is adapting and growing in that more corrected position. Thats good news. Do you have a re-casting date scheduled already? Thanks for the update on & Eliana. Sincerely, HRH and Eliana Hey everyone, This is Hansen posting for . She was in Salt Lake with me on the 14th and 15th getting a cast change and asked me to update you all on her situation. I got home on the 20th from getting Lily's cast changed and our whole family got sick immediately afterward. Sorry I have not posted sooner. First about Eliana. took her to Primary Children's to have her evaluated for a tethered cord and sure enough she had one. They did a tether cord release surgery on the 16th the day Lily and I left the hospital. They were going to have to stay there for a few weeks and wait for her to heal and then get recasted. was not excited about having Eliana out of her cast for that long. I hope they did not have to stay there over Thanksgiving. I have not yet heard if they are home yet or not. Lily's cast did not go as I had hoped. She at least was able to come out of her hip spica cast and her hips are doing very well. She only has to wear a brace at night for her hips and should be fully recovered at the next visit. Her risser cast was done again and we did not get as good of a correction with this one as the last. She was at 8 degree in the first cast and this one is 14 degrees. Dr. D' Astous emailed us telling us not to worry, that it is fairly common to have that kind of variablilty from cast to cast. I looked at the x-rays, and yes although I am not a doctor I know, I could see a huge differenc in the curve. It was much larger than the last cast. Of course as a mom I am always freaking out. She is relearning how to walk again after having the spica cast removed for her hip dyplaysia which is taking longer than I had hoped. Her muscles will take awhile to work back up again and the cast is very heavy this time around. It was great to meet everyone in Erie at the conference and I hope to continue to hear how everyone's little ones are doing. I am so sorry Tracey to hear all the difficulties with your sweet little girl. Hope everyone had a great Thanksgiving!!! Sorry this was so long. , Mike, , and Lily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 I'm so glad you've found us. NO ONE understands what you're going through like we do. No matter what you decide, PLEASE at least get a barium swallow and endoscopy done every couple of years and monitor the condition of your esophagus. I was fortunate to be told from the beginning to have routine follow up done every 3-5 years and now, after more than 25 years I've gone to every other year tests - so I have no surprises. Unfortunately for some on this site, they were never told to do that and by the time they decided they couldn't 'live with it' any longer, their E's were so badly distended and stretched out they had no choices anymore. I'm still in good shape more than 18 years after surgery. I eat 80% of what I want 90% of the time - not too bad. Unfortunately your doctors did you a great disservice by not ever explaining that A canNOT be cured - you just learn to live with it and find ways to improve your symptoms. Please keep us posted and get in touch personally with Isabell, she has been a great support to us and knows several good doctors and surgeons on your side of the water. It does help, when you have something like this in your life, to have someone to 'share' it with - who understands and can help you along the road. Good Luck and Happy Swallowing! - in NC Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.