Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 OHMIGOSH Karin - I hope Cody is OK!! It's incredible how these things happen so fast!!! Please, let us know when you get back form hospital how he is......we are thinking of you and Cody and pray that he not have to go to the burn centre!! Carolyn and the whole Sykes Clan Cody > From: Aasknc@... > > Hi, > > We had an accident here with our 17 yr old son, Cody, tonight. He was across > the street talking to some of his friends and they lit a barrel to keep warm > (dumb dumb kids) usign gasoline. It blew up and Cody was lit on fire. The > boys managed to get most of it out and get his shirt off but his skin was > still in flames...... some woman ran out and poured aloe vera gel all over > him (never, never do that!). He ran in our house crying for help and I threw > him in a cold shower. His skin was just rolling off.......... he has > partial and full thickness burns to his entire back, back of his neck and his > arms. Being alone here I cant go tonight to be with him, but will first > thing in the morning. They dont know yet whether or not they need to > transfer him to a burn center. I sure hope not. > > I'll let you know what happens. > > Karin > > > http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Hi Karin, Iam new in this list but it really made me cry what happen to your son because we experienced almost the same with my brother when he was 14 but with assistance and care he will be fine. I will pray for all of you. Take care. Mabel mom to 8 months old triplets Carolina, Cristian & a-ds >From: Aasknc@... >Reply-Multiples-DSonelist >multiples-dsonelist >Subject: Cody >Date: Thu, 2 Dec 1999 01:09:34 EST > >Hi, > >We had an accident here with our 17 yr old son, Cody, tonight. He was >across >the street talking to some of his friends and they lit a barrel to keep >warm >(dumb dumb kids) usign gasoline. It blew up and Cody was lit on fire. The >boys managed to get most of it out and get his shirt off but his skin was >still in flames...... some woman ran out and poured aloe vera gel all >over >him (never, never do that!). He ran in our house crying for help and I >threw >him in a cold shower. His skin was just rolling off.......... he has >partial and full thickness burns to his entire back, back of his neck and >his >arms. Being alone here I cant go tonight to be with him, but will first >thing in the morning. They dont know yet whether or not they need to >transfer him to a burn center. I sure hope not. > >I'll let you know what happens. > >Karin > >------------------------------------------------------------------------ >http://DSyndrome.com/Multiples ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Our prayers are with Cody and you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1999 Report Share Posted December 1, 1999 Many prayers to you.. Hope all turns out well Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Geez Karin!! I'm so sorry to hear about Cody!! My prayers are with you and your family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 We are so sorry about Cody. Our thoughts and prayers are with you. Marcia Mom to Sara (DS) & 5 and Lucas 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Oh, how awful, Karin... I'll be thinking of you, family, and Cody and praying for you... Tears, Jean Cody >From: Aasknc@... > >Hi, > >We had an accident here with our 17 yr old son, Cody, tonight. He was across >the street talking to some of his friends and they lit a barrel to keep warm >(dumb dumb kids) usign gasoline. It blew up and Cody was lit on fire. The >boys managed to get most of it out and get his shirt off but his skin was >still in flames...... some woman ran out and poured aloe vera gel all over >him (never, never do that!). He ran in our house crying for help and I threw >him in a cold shower. His skin was just rolling off.......... he has >partial and full thickness burns to his entire back, back of his neck and his >arms. Being alone here I cant go tonight to be with him, but will first >thing in the morning. They dont know yet whether or not they need to >transfer him to a burn center. I sure hope not. > >I'll let you know what happens. > >Karin > >>http://DSyndrome.com/Multiples Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Cody is in my prayers! Please keep us updated! Love, Sara --- Aasknc@... wrote: > From: Aasknc@... > > Hi, > > We had an accident here with our 17 yr old son, > Cody, tonight. He was across > the street talking to some of his friends and they > lit a barrel to keep warm > (dumb dumb kids) usign gasoline. It blew up and > Cody was lit on fire. The > boys managed to get most of it out and get his shirt > off but his skin was > still in flames...... some woman ran out and > poured aloe vera gel all over > him (never, never do that!). He ran in our house > crying for help and I threw > him in a cold shower. His skin was just rolling > off.......... he has > partial and full thickness burns to his entire back, > back of his neck and his > arms. Being alone here I cant go tonight to be with > him, but will first > thing in the morning. They dont know yet whether or > not they need to > transfer him to a burn center. I sure hope not. > > I'll let you know what happens. > > Karin > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Karin, We'll keep Cody (and you!) in our prayers! Judi --- Aasknc@... wrote: > Hi, > > We had an accident here with our 17 yr old son, > Cody, tonight. He was across > the street talking to some of his friends and they > lit a barrel to keep warm > (dumb dumb kids) usign gasoline. It blew up and > Cody was lit on fire. The > boys managed to get most of it out and get his shirt > off but his skin was > still in flames...... some woman ran out and > poured aloe vera gel all over > him (never, never do that!). He ran in our house > crying for help and I threw > him in a cold shower. His skin was just rolling > off.......... he has > partial and full thickness burns to his entire back, > back of his neck and his > arms. Being alone here I cant go tonight to be with > him, but will first > thing in the morning. They dont know yet whether or > not they need to > transfer him to a burn center. I sure hope not. > > I'll let you know what happens. > > Karin > > ------------------------------------------------------------------------ > http://DSyndrome.com/Multiples > <HR> <html> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 Karin: Cody (and you!) are in our thoughts and prayers. Please let us know how he's doing. Judi-Mom to Sam and __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Karin,I just got the message. Sorry to hear about the incendent. You and Your family are in our prayer. God Bless and take care. Cody >From: Aasknc@... > >Hi, > >We had an accident here with our 17 yr old son, Cody, tonight. He was across >the street talking to some of his friends and they lit a barrel to keep warm >(dumb dumb kids) usign gasoline. It blew up and Cody was lit on fire. The >boys managed to get most of it out and get his shirt off but his skin was >still in flames...... some woman ran out and poured aloe vera gel all over >him (never, never do that!). He ran in our house crying for help and I threw >him in a cold shower. His skin was just rolling off.......... he has >partial and full thickness burns to his entire back, back of his neck and his >arms. Being alone here I cant go tonight to be with him, but will first >thing in the morning. They dont know yet whether or not they need to >transfer him to a burn center. I sure hope not. > >I'll let you know what happens. > >Karin > >>http://DSyndrome.com/Multiples > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 In a message dated 9/21/2005 1:27:42 A.M. Eastern Daylight Time, momisblonde@... writes: Cody is tired of having his hands stuck. He says the numbing cream does not work. Is that the only place they try is his hands? Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 In a message dated 9/21/2005 9:19:19 A.M. Eastern Daylight Time, momisblonde@... writes: They do access the veins in his wrist area, but he is just tired of getting stuck. The nurse told him that eventually they would have to go to his feet when his hands gave out. I don't understand why they don't use his arms! His veins are much bigger there and it hurts much less. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 In a message dated 9/21/2005 11:08:37 A.M. Eastern Daylight Time, mistycmathis@... writes: His recovery time was nothing he was bouncing around that night (which was not reccomended by the surgeon) I tried my best to keep his activities to a minimum but with a 3 year old its hard. I think it's much easier on the younger ones. I'm glad it is working so good for your little guy. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 In a message dated 9/21/2005 11:08:37 A.M. Eastern Daylight Time, mistycmathis@... writes: His recovery time was nothing he was bouncing around that night (which was not reccomended by the surgeon) I tried my best to keep his activities to a minimum but with a 3 year old its hard. I think it's much easier on the younger ones. I'm glad it is working so good for your little guy. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 They do access the veins in his wrist area, but he is just tired of getting stuck. The nurse told him that eventually they would have to go to his feet when his hands gave out. JK > > In a message dated 9/21/2005 1:27:42 A.M. Eastern Daylight Time, > momisblonde@y... writes: > > Cody is tired of having his hands stuck. He says the numbing > cream does not work. > > > Is that the only place they try is his hands? > > Janet, Mom to Brittany, CVID, age 14 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 >Welcome!!!! I will throw in my 2 cents on the port! My son Jake who is 3 has been on IVIG since Nov. and by January it was almost impossible to get a vein, on that last infusion it took 3 hours of sticking before they got a vein...it was pretty bad. A port was recommended and after careful consideration we did it. Personally it has been HEAVEN SENT for us. Jake was at the point when we went in for the infusions which was every 2 weeks he would cry as soon as we hit the parking lot of the hospital because they were going to " stick " him. The port has releived his anxiety and mine because he knows when they access the port that it will only take a second... he even now sits up there with his shirt off and says " Please stick my button " that is what he calls his port a button. Jakes surgery went well it took longer than expected because they went in on his left upper chest and couln't get it in and had to go to the right. His recovery time was nothing he was bouncing around that night (which was not reccomended by the surgeon) I tried my best to keep his activities to a minimum but with a 3 year old its hard. My family has had a very good experience with the port! I will be praying for your family next week as you go through the surgery I know how scary it can be! Misty mom to Jake age 3 IGA def. and Rylee age 8 perfectly healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 >Welcome!!!! I will throw in my 2 cents on the port! My son Jake who is 3 has been on IVIG since Nov. and by January it was almost impossible to get a vein, on that last infusion it took 3 hours of sticking before they got a vein...it was pretty bad. A port was recommended and after careful consideration we did it. Personally it has been HEAVEN SENT for us. Jake was at the point when we went in for the infusions which was every 2 weeks he would cry as soon as we hit the parking lot of the hospital because they were going to " stick " him. The port has releived his anxiety and mine because he knows when they access the port that it will only take a second... he even now sits up there with his shirt off and says " Please stick my button " that is what he calls his port a button. Jakes surgery went well it took longer than expected because they went in on his left upper chest and couln't get it in and had to go to the right. His recovery time was nothing he was bouncing around that night (which was not reccomended by the surgeon) I tried my best to keep his activities to a minimum but with a 3 year old its hard. My family has had a very good experience with the port! I will be praying for your family next week as you go through the surgery I know how scary it can be! Misty mom to Jake age 3 IGA def. and Rylee age 8 perfectly healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 My daughter Chelsea finally got her port placed when she was 2 years old after having many vein access problems we had to do a surgical cut down (ankle) and then 2 jugular catheters. NO FUN!!!! After fighting for the port for almost 6 months we finally got it. Life Changing for us all. Chelsea has NEVER had an infection and her port is now 8 years old. Chelsea has even educated New parents of PID babies on why they should consider a port for their kids. My little Angel!!!! How proud we are of her. It is a tough decision to make when there are the risks about infection, however when there is so much pain and trouble accessing veins it makes the decision a little bit easier. Marlo, Mom to Chelsea (10) PID, IGA, IGM def. Severe Sinus Disease, Reactive Airway and possible GERD. Marlo Independent Jewelry Consultant Cookie Lee 818-425-7847 Re: Cody >Welcome!!!! I will throw in my 2 cents on the port! My son Jake who is 3 has been on IVIG since Nov. and by January it was almost impossible to get a vein, on that last infusion it took 3 hours of sticking before they got a vein...it was pretty bad. A port was recommended and after careful consideration we did it. Personally it has been HEAVEN SENT for us. Jake was at the point when we went in for the infusions which was every 2 weeks he would cry as soon as we hit the parking lot of the hospital because they were going to " stick " him. The port has releived his anxiety and mine because he knows when they access the port that it will only take a second... he even now sits up there with his shirt off and says " Please stick my button " that is what he calls his port a button. Jakes surgery went well it took longer than expected because they went in on his left upper chest and couln't get it in and had to go to the right. His recovery time was nothing he was bouncing around that night (which was not reccomended by the surgeon) I tried my best to keep his activities to a minimum but with a 3 year old its hard. My family has had a very good experience with the port! I will be praying for your family next week as you go through the surgery I know how scary it can be! Misty mom to Jake age 3 IGA def. and Rylee age 8 perfectly healthy This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Judy - our daughter Macey is 10 and had a port back when she was almost 3. She kept it for 10 months before it became infected too many times and had to be pulled. Ports can have their place, those patients on daily IV meds or nutrition benefit greatly. But with the introduction of subcutaneous infusion weekly it has given many PID patients new opportunities. Many patients who have ports have them for chemotherapy or other cancer agent treatment. This different than a patient who has a congenital immune deficiency and will probably never develop a viable immune system. Cancer patients systems are structured differently and affected differently by the meds that are infused in the port. They tend not to run the risks with infection and colonization of bacteria like PID patients do. I work in an OR and we probably put 10 or so ports in a week. So I've seen both sides of it. The great part about subq treatment is that it keeps a more constant level in the system and there isn't any type of half-life. No peaks and troughs like with the monthly infusions. Your immunologist could give you more information about it. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2005 Report Share Posted September 21, 2005 Judy - our daughter Macey is 10 and had a port back when she was almost 3. She kept it for 10 months before it became infected too many times and had to be pulled. Ports can have their place, those patients on daily IV meds or nutrition benefit greatly. But with the introduction of subcutaneous infusion weekly it has given many PID patients new opportunities. Many patients who have ports have them for chemotherapy or other cancer agent treatment. This different than a patient who has a congenital immune deficiency and will probably never develop a viable immune system. Cancer patients systems are structured differently and affected differently by the meds that are infused in the port. They tend not to run the risks with infection and colonization of bacteria like PID patients do. I work in an OR and we probably put 10 or so ports in a week. So I've seen both sides of it. The great part about subq treatment is that it keeps a more constant level in the system and there isn't any type of half-life. No peaks and troughs like with the monthly infusions. Your immunologist could give you more information about it. Ursula Holleman mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 Ursula, Thanks for your comments - all this can be so overwhelming and you only hope and pray you are making the right decisions. Cody is still having the port next week, but I would like more information about the " subq " . His specialist in Fort Worth did not mention anything about this. I will ask him, but in Cody's best interest, I think the port is the most favorable right now, for him. It was his decision to go with it. He is 6'4 " now and just 137 (with clothes and heavy plastic back brace on). Thanks for your support - it IS valued. Judy K > Judy - our daughter Macey is 10 and had a port back when she was almost 3. She kept it for 10 months before it became infected too many times and had to be pulled. Ports can have their place, those patients on daily IV meds or nutrition benefit greatly. But with the introduction of subcutaneous infusion weekly it has given many PID patients new opportunities. Many patients who have ports have them for chemotherapy or other cancer agent treatment. This different than a patient who has a congenital immune deficiency and will probably never develop a viable immune system. Cancer patients systems are structured differently and affected differently by the meds that are infused in the port. They tend not to run the risks with infection and colonization of bacteria like PID patients do. I work in an OR and we probably put 10 or so ports in a week. So I've seen both sides of it. > > The great part about subq treatment is that it keeps a more constant level in the system and there isn't any type of half-life. No peaks and troughs like with the monthly infusions. Your immunologist could give you more information about it. > > Ursula Holleman > mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes Insipidus, colonic inertia) > http://members.cox.net/maceyh > > Immune Deficiency Foundation - Peer Contact for GA > http://www.primaryimmune.org > > IDF Patient/Family Handbook > http://www.primaryimmune.org/pubs/book_pats/book_pats.htm > > / > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 Kim, The e-mail did go through (that's why I like my typewriter!). Cody was " talking " to last night - so thanks again. Just " knowing " someone else his age going through the same thing will help. Judy > > Judy, > > Jess said she received an e-mail from you and she wrote back to Cody, > so I think that you got through o.k. now. If not, let me know. > > Kim, > mom to , CVID > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 lol..I was wondering about the ? marks..at first I thought " NJ teacher, figures! " just kidding. Some of you are fantastic. On Mon, Oct 20, 2008 at 7:07 AM, <Altoonakenton@...> wrote: > > I? think it is also time to buy The Late Talker Book and have sign it > and write something appropriate...she did that for me...and mentioned my > kids' names, etc....and that she'd be checking back with what strategies > have worked,etc for her next book....you'd have to write to --maybe off > this list--anyway, I just wanted them to know what apraxia was and how it > was " treated " etc.....even though the teachers are all?supposed to have the > IEP and follow it, I know that they always all don't....remember, I am the > NJ teacher (24 years) with 3 classified kids that will probably be found in > the bottom of a lagoon somewhere.... but you would think they'd watch what > they say and do knowing that I will be questioning things....I really let a > lot of things go and pick and choose what I really think they should or > should not be doing.....like I think an FM system is a great thing to have > in the class for all kids....that's one thing that is written in the twins' > IEP and still not in their classes and I even told the CST last year that > they could put them together so that it would help with the cost, etc....but > they didn't....so they are out of compliance--as usual....any help needed, > please let me know....Good luck...Kathy (NJ) and Logan and Brendon, too~! > > And I have no idea why there are always question marks are the end of my > sentences....although I am currently teaching Kindergarten, I realize what a > declarative or exclamatory sentence is...LOL!!!!!!!!!!! > > Quote Link to comment Share on other sites More sharing options...
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