Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Hi Jodi, Thanks for the advice. listens well and he does well with shots but everyday will be a problem. Among other things doesn't want is: 1). Going to bed 2). his vitamins 3). Time outs 4). Brushing his teeth So we shall see. Like I said, this is going to be fun especially with my mechanically inclined wife. I just know some how she is going to end up giving herself a shot. Don't ask. I am still trying to figure out how she locked herself in the basement twice. I'll keep you posted. Ken M > Ken, > > I understand that does not want these shots. He is probably > going to give you a big fight with it, too. I'd like to offer a few > suggestions that may help... > > 1-Let practice on a stuffed animal. He can do this after you > have given him his shot so you don't waste a precious needle. > > 2-Get to participate as much as you can. Let him choose the > site and wipe it with the alcohol swab. Don't forget to fan it with > your hand, or his, so the alcohol dries first. > > 3-Set up a sticker chart. Each night that gets his shot, give > him a sticker to add to his chart. When he reaches a certain > amount, like 7 'cause it's a week, then he can have a reward like a > trip for ice cream, or watching a special movie, or some other > pleasurable activity for him. You can also offer him a larger > reward when he gets up to 30 because that would represent a month. > This way he gets a small treat in a shorter period of time, but can > reach for the longer goal and be rewarded, too. > > 4-Remind that YOU are the parent and make the medical > decisions for him and this is what you have decided. Tell him that > you have to do this for at least three months and see if he grows - > to see that the medication is working. By the end of the three > months, he will be so used to it, it will not be a big deal anymore. > > 5-If all else fails, go the sleeping route. I don't think it's a > great idea to start out that way, but if after a period of time he > is really resisting, that may be your only choice. Also, I believe > it is okay to give the shots in the morning instead of at night. > Perhaps would be more agreeable in the morning when he is not > tired and cranky and wanting to go to bed. > > If I can think of any other ideas, I'll let you know. I'm > recovering from oral surgery, so the Percocet is kicking in and I'm > not thinking too clearly. Don't even ask me about the pain. It's > just awful. > > Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 lol... Tessa is nearly 7 and we haven't got past that yet. She takes after my sister, I don't expect she'll ever like bed-time <G> Hope the shots go OK. {{HUGS}} Steph (Darcy 29 months 7.3kg 79cm but not weighed for ages and Tessa 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Hi Ken delighted to hear is starting ght. If it is the pen device it is really easy to use and once you get over the initial nerves it is really no problem. I cannot believe there is no local nurse who can show you how to do this. That is really quite unbelievable. Anyway best of luck. Maeve mother of update > Hi everyone, > > I have been unable to access messages for a few days. The > company I work for is blocking access to " unauthorized " web > sites. So I can no longer acces the list from work and fix any > bouncing problems. A lot of people aat work are quite upset. > They can't get their web based e-mail and a whole bunch of stuff. > If it not work related it is blocked. > > Any way back to . He starts growth hormone on Tuesday. It > was supposed to be yesterday but apparently there is no one in > Maine, New Hampshire, Vermont, Massachusettes and Rhode > Island who can train us in how to use the pen that comes with > 's growth hormone. Some one has to drive from Ct ( 3 > hours ) to Boston to train us. We have to drive an hour and a half > to meet them. I find it hard to believe that no one in the Harvard > Medical School, Tufts University school of medicine, Boston > children's hospital, The New England Floating Hospital for > Children, Deaconess, Brigham and Women's, and Lahey Clinic ( > to name a few ) knows how to use the Pen 5 and train us to give > his shot. Nope, not a soul according Pharmacia. I just love > drug and insurance companies. > > We have been trying to prepare . He keeps saying " You're > not listening to my words. I don't want the shots. " This is going to > be fun. > > I'll keep you posted on how it goes. Also, I hope to get access to > the list from work. Otherwise, I am going to have some late > nights again. > > Ken M > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , I will keep you guys in my thoughts and prayers. Please keep us updated. I know how difficult this is for you right now. HUGS!!!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , I will keep you guys in my thoughts and prayers. Please keep us updated. I know how difficult this is for you right now. HUGS!!!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , I hope things are improving for Sam. My thoughts and prayers are with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , I hope things are improving for Sam. My thoughts and prayers are with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , you sent prayers my way for hailee and i am now glad to return the favor to you. I hope that they get her seizures under control soon, that has to be so scary, but at least you are at a good place and she is in good hands. luv Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , you sent prayers my way for hailee and i am now glad to return the favor to you. I hope that they get her seizures under control soon, that has to be so scary, but at least you are at a good place and she is in good hands. luv Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , Keep the communication coming. We are all here to listen. I will keep Sam in my prayers and you also. Keep the faith and fight the good fight. My heart goes out to you. I hope you have some others there with you during this difficult time. God Bless, Riley update Hello all. Well as some of you have known , Sam was admiited Tuesday (4th) for a 23hr eeg study due to her breakthrough siezures. Well, we are still here.( I am gettin the picture that we are not going home soon) About 20min after her eeg was running there were five docs in room. Her eeg is showing siezure activity every 15-30 seconds. (even without clear clinical siezure activity noted physically) The nueros have tried gobs of different meds and combos. The only one that seems to show some improvement is phenobarbital when given iv. when they try to switch her to oral the eeg gets worse again. She has also started apnea spells with drops in oxygen. Not moving her bowls well anymore, and ran 102 fever for 45 min for no reason. They tell me that if they do not get this eeg under some control Sam will start loosing brain fuction. This morning the doc stated " we are not winning here " Please all, keep Sam in you prayers, I am not ready to loose this fight. I know the doc said we are not winning, but I feel the game is not over and I am not ready to accept defeat. I will try to keep you all updated. It is nice that this hospital(UofC) has computers and the bed side. So I may be bugging you all if that is ok. God bless all and keep those prayers going please, Please contact mito-owner with any problems or questions. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , Keep the communication coming. We are all here to listen. I will keep Sam in my prayers and you also. Keep the faith and fight the good fight. My heart goes out to you. I hope you have some others there with you during this difficult time. God Bless, Riley update Hello all. Well as some of you have known , Sam was admiited Tuesday (4th) for a 23hr eeg study due to her breakthrough siezures. Well, we are still here.( I am gettin the picture that we are not going home soon) About 20min after her eeg was running there were five docs in room. Her eeg is showing siezure activity every 15-30 seconds. (even without clear clinical siezure activity noted physically) The nueros have tried gobs of different meds and combos. The only one that seems to show some improvement is phenobarbital when given iv. when they try to switch her to oral the eeg gets worse again. She has also started apnea spells with drops in oxygen. Not moving her bowls well anymore, and ran 102 fever for 45 min for no reason. They tell me that if they do not get this eeg under some control Sam will start loosing brain fuction. This morning the doc stated " we are not winning here " Please all, keep Sam in you prayers, I am not ready to loose this fight. I know the doc said we are not winning, but I feel the game is not over and I am not ready to accept defeat. I will try to keep you all updated. It is nice that this hospital(UofC) has computers and the bed side. So I may be bugging you all if that is ok. God bless all and keep those prayers going please, Please contact mito-owner with any problems or questions. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2002 Report Share Posted September 20, 2002 julie, we have the same o2 problems as well and the heart also. jessica will start off at 98-99 then drop to 80's and bounce back up to the 90's. pulmo told us to use the o2 every night because the bouncing around does more damage then o2 at night. the same holds for her heart too. it starts out at 90-100 then slowly drops to the 80s, then 70s, then to 60s and 50s. she has occasional drops to the 20's !!!! thank god we have night nursing, i would go crazy. we use breathing treatments to help keep her heart rate up at night, but when we give a treatment it drops her o2...lol its all a circle. we are looking at a pacemaker for the heart issue. the mito has damaged her autonimic system so bad it can't control anything any more. hope this helps if you ever need to chat look for me. michele, mom to jessica, 8 yrs old, mitochondrial diease, metabolic disorder, G-J tube, MR, intractable seizures, keto kid since 3/02, bladder dysfunction, dysautonomia and light of my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 --- Hi anna , im so glad that everything came together so well for you. July is just around the corner. dont get too nervous about it and make sure you enjoy your vacation. Are you sure you cant squeeze me in a suitcase? i lost a lot of weight from being wired im sure ill fit!ha ha ha. Im am jealous:) Where are you going? Are you going with friends?Hope you dont think im nosy. i saw my ortho as well and he is very pleased so far. he has more work to do though. His words were " you have a good bite but i want to make it excellent, so dont be in too much of a hurry to get out of these braces " His confidence and will to do his best put me at ease. next i have a dentist app. to finally clean my teeth after being wired. it is really hard to brush at the lower back because there is so much less room. Plus scar tissue and minor swelling. I hope the hygenist isnt to grosse out.lol. Talk to you soon girl angie In orthognathicsurgerysupport , " annauk77 " <annauk77@y...> wrote: > well, Im just back from seeing the ortho- and he seems really > pleased with me. To begin with he was humming and haaaing about > upper sugery (oh for those who dont know -I have an underbite, > braces 1 year so far) saying that if the surgeon wasnt happy enough > Id have to lose a couple of teeth to allow spacing. Then he saw my > molds which were taken on the last visit- He put the two pieces > together.....and I had a perfect bite! I got excited that my teeth > could look like that! He almost seemed to be patting himself on the > back at what a great job he'd done. My teeth have moved as they were > supposed to. My bite has gone form 2mm to 5mm in a year. Of course > nothing is definite until I have seen my surgeon--in 4 weeks.....The > ortho seemed pretty sure that Id have surgery end of July all being > well. I got excitied!!...and then felt totally sick at the idea of > it. Im going to have to find some mind control thing so I dont panic. > Also I no longer have to wear the elastics at night. I have the > strongest wire in the lower...and yeh..Im sore now!!! But I had > photos and X-rays done....and owww Im happy that I can see the end- > Im just wary of being too hopeful incase the surgoen says otherwise. > Sorry for waffling. I guess Im excited and relieved that things are > moving. Still I have a 2 week holiday to the states to look forward > to. that will be in 5 weeks time. that should calm me down a bit!! > Ok now im all out of words. Im off to ponder the future and if I > think of any questions ..I'll ask em > > Angie- How did your appointment go today? Everything coming together > ok? > > Thanks for reading....! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Nan, I'm so sorry to hear about . I will continue to pray for her and you and your husband as well to be able to make the right decisions for her health care. Thanks for the update. I hope things turn around soon. p.s. How old is ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Nan, I'm so sorry to hear about . I will continue to pray for her and you and your husband as well to be able to make the right decisions for her health care. Thanks for the update. I hope things turn around soon. p.s. How old is ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 -Nan, I hope when they rehydrate , get the TPN in and get her kidneys back in shape that she will see her true health status correctly and be able to make good decisions for her health. Thanks heavanes she has you and her husband looking out for her, Celia- In , " Nan " <msnanlk@a...> wrote: > Yesterday, after an extended visit at the hospital, and in the face > of ongoing protests from that she was doing " just fine " and > didn't need Potassium or TPN or anything more than juice and water, > my husband again had to invoke his power of attorney to have her > sedated so that they could start her TPN (again). She has repeatedly > pulled out her IV lines and continues to argue that she knows her > body better than anyone and she knows that her values are all fine > (trust me, they aren't). This was a necessary step because she was > headed into renal failure. She is now resting comfortably and will > continue to be sedated for several days until it is felt that the > imminent danger of renal failure has passed. > > She is not at this point aware of the severity of her medical > condition and believes that she has a simple thyroid problem that > could be treated with medication. > > It is so sad for us to watch this. We have been in touch with her > counselor on an ongoing basis and are working out the best way for > her son to see her without being unduly traumatized by the fact that > she currently weighs under 70 lbs. When not sedated, she says she is > ready for " battle " and that she doesn't want her " son to see her with > all of these tubes " . She keeps removing them for his benefit (she > thinks). > > Thanks for all of your thoughts and prayers -- > > Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 -Nan, I hope when they rehydrate , get the TPN in and get her kidneys back in shape that she will see her true health status correctly and be able to make good decisions for her health. Thanks heavanes she has you and her husband looking out for her, Celia- In , " Nan " <msnanlk@a...> wrote: > Yesterday, after an extended visit at the hospital, and in the face > of ongoing protests from that she was doing " just fine " and > didn't need Potassium or TPN or anything more than juice and water, > my husband again had to invoke his power of attorney to have her > sedated so that they could start her TPN (again). She has repeatedly > pulled out her IV lines and continues to argue that she knows her > body better than anyone and she knows that her values are all fine > (trust me, they aren't). This was a necessary step because she was > headed into renal failure. She is now resting comfortably and will > continue to be sedated for several days until it is felt that the > imminent danger of renal failure has passed. > > She is not at this point aware of the severity of her medical > condition and believes that she has a simple thyroid problem that > could be treated with medication. > > It is so sad for us to watch this. We have been in touch with her > counselor on an ongoing basis and are working out the best way for > her son to see her without being unduly traumatized by the fact that > she currently weighs under 70 lbs. When not sedated, she says she is > ready for " battle " and that she doesn't want her " son to see her with > all of these tubes " . She keeps removing them for his benefit (she > thinks). > > Thanks for all of your thoughts and prayers -- > > Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan - I somehow missed this original post. I'm very sorry to read how badly is doing. All of you are watching her melt away and that must be horrible. You are all in my thoughts and prayers. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan, I'm so sorry. Please know that you are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan, I'm so sorry. Please know that you are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan, I'm so sorry. Please know that you are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan, and the rest of you are in my thoughts and prayers daily. I hope that she soon becomes infection free so that she can recieve more treatment- even if its just to make her more comfortable. I am hopeful that things will get better for her. Keep us posted. take care, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan, and the rest of you are in my thoughts and prayers daily. I hope that she soon becomes infection free so that she can recieve more treatment- even if its just to make her more comfortable. I am hopeful that things will get better for her. Keep us posted. take care, Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Nan I am so sorry to hear that is in critical condition. You, her and the rest of the family will remain in my thoughts and prayers. Hugs, laurie > > Reply-To: > Date: Fri, 26 Sep 2003 14:40:46 -0000 > To: > Subject: Update > > Just a quick note to update you on 's current situation. > > She remains hospitalized and is currently considered in critical > condition. Her weight is down to 63 lbs. All of her lines have been > pulled due to infections and she is receiving limited feeding until > she is infection free for 3 full days. In the meantime she has little > energy and drifts in and out of sleep/consciousness. All of our > contact with her (unless we are physically present) is through the > nursing staff because she no longer seems to answer the phone. > > Please pray for her. > > Nan in Illinois > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 Hey , I'm sure that collectively you've got so many positive thoughts going your way, that everything will be fine! I had to go for an ultrasound once and it also was just a sabaceous cyst....in other words, nothing! So just know we're all pulling for you! Maggie Quote Link to comment Share on other sites More sharing options...
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