Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Jo, I am so sorry to hear about the struggles Bayly continues to go through. Poor little guy does not seem to catch many breaks. I am also sorry to hear about the other support group you are involved in that seems to be having those problems. It's so hard when you hear about things like that because it totally tarnishes the groups purpose. For so many of us we have been apart of this group for years I think I was sixteen when I joined this message board and now I am twenty four years old. Sometimes I was more active on the board and sometimes not so much, college and work and just attempting to be a " normal " teen and young adult would keep away for short bouts, but I always knew that there was an extended family here that I knew and loved that would support me in my time of need. I have had so much support on this message board I could never put into words how much all of you have impacted me and not just the support for the JA. When I applied to college and I recieved tons of encouragement, when I graduated highschool and college and got into gradschool the love, support, and congratulations I got was imense, when I went into a medicated remission you all rejoiced with me, when the disease relapsed you all sent your love and prayers, and when I went through my mother being diagnosed with cancer and passing away you all were there by my side no matter how many hundreds or thousands of miles seperated us. This message board is my extended family and I love you all so much. It sadens me that you have experienced people using a message board for something else because the immense support, love, understanding, and encouragement is more than anyone can ask for. I will be keeping little Bayly in my thoughts and prayers and hope they can bump him up on the tonsilectomy list and that he gets some much needed relief. With Love (MCTD, 24) From: Jo & Grant <joking70@...> Subject: bit bewildered here Date: Friday, December 19, 2008, 9:24 AM G'day all, Long time, no post, hey?! But I've been reading the daily digest, and feel blessed to be keeping in touch with some very special special people on this list. Truth is, I've been feeling a bit burned by a similar so-called support system here. Some of the very people who have been sharing this JIA journey for the past few years have not been very 'supportive' to others. In fact, I get the distinct impression that some of them have for whatever reason decided (and I hope to God it's not a conscious decision) to get something out of their child being ill. I'm not talking Munchausen-by- proxy or anything, more like a " let's see what we can get for free " type of thing. And to be honest, it's making me sick to my stomach. We are all very blessed to have groups or charitable organisations that offer little things to sometimes take the sting out of a serious condition, and most people I have met appreciate this most gratefully.. . but when people seem to be seeking more and more, or bring an entourage along, or act put out if they miss out on one of these such events, well, I just shake my head and feel hurt in my heart. And when someone reaches out to a support group, and gets criticised by others for seeking support (or just having a vent), then I have to ask whether some truly understand the meaning of 'support'. So I've been trying to lay low, stick with those who really do have the children's best interests at heart, and still work towards making a difference for kids with arthritis the way I know best. Sadly, sometimes even that feels like it's frowned upon. Apologies if this seems like a pity-party, but I'm hoping to find the support I need right now. Especially since it's now after 4am and I've been up for two hours with my sick little boy (hubby took the early shift and is now snoring in the next room while Bayly struggles for breath next to me in my bed here). Bayly's tonsils are up yet again, his nose is blocked yet again, and he's having 'obstructive sleep apnoea' episodes. He keeps stopping breathing for around 3-7 seconds at a time, 2-3 times a minute. Couple of times I've had to give him a little shake to start again. It's scary. This is what our nights have been like a lot lately. Poor little fella's had things rubbed on him, squirted up his nose, extra doses of Pred. We've had doctors' appointments squeezed in, and now the thinking is to book him in to whip out the offending tonsils, but of course there's a wait list! ;-) I'm really thankful my husband is here tonight (he usually works night shift), so at least he got the earlier shift with Bayly and I got a bit of sleep! :-D Hugs to all, hope the Christmas cards arrive safely to those whose addresses we had. And thanks. Jo Bayly, 6, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi Jo, I am so sorry to hear that you have to be on a list to have Bayly has to be on a waiting list to have his tonsils removed, even more sorry that he has to suffer with sleep apnea because of it. My daughter Maggie has been on a CPAP machine for a few months now. She had a sleep test done and stopped breathing on the average of 14.2 times in an hour. I had no idea that this was going on just noticed her waking up gasping for air and sleeping on and off all day long in little spurts. The CPAP machine has been a wonderful addition in her life, it is a bit of a hassle to get used to at first (at least it was for her, she is 11) but now it has just become part of her nightly routine. Would something like this be possible for you to rent until your sons tonsils can be removed? It does keep the airways open, espeically in an obstructive airway situation. We will keep your family in our prayers that something changes for you and soon!! Have you tried elevating his bed or having him sleep on his side? This did help my daughter a little bit too. Until then, try and stay strong! Diane and Maggie From: Jo & Grant <joking70aapt (DOT) net.au> Subject: bit bewildered here @group s.com Date: Friday, December 19, 2008, 9:24 AM G'day all, Long time, no post, hey?! But I've been reading the daily digest, and feel blessed to be keeping in touch with some very special special people on this list. Truth is, I've been feeling a bit burned by a similar so-called support system here. Some of the very people who have been sharing this JIA journey for the past few years have not been very 'supportive' to others. In fact, I get the distinct impression that some of them have for whatever reason decided (and I hope to God it's not a conscious decision) to get something out of their child being ill. I'm not talking Munchausen-by- proxy or anything, more like a " let's see what we can get for free " type of thing. And to be honest, it's making me sick to my stomach. We are all very blessed to have groups or charitable organisations that offer little things to sometimes take the sting out of a serious condition, and most people I have met appreciate this most gratefully.. . but when people seem to be seeking more and more, or bring an entourage along, or act put out if they miss out on one of these such events, well, I just shake my head and feel hurt in my heart. And when someone reaches out to a support group, and gets criticised by others for seeking support (or just having a vent), then I have to ask whether some truly understand the meaning of 'support'. So I've been trying to lay low, stick with those who really do have the children's best interests at heart, and still work towards making a difference for kids with arthritis the way I know best. Sadly, sometimes even that feels like it's frowned upon. Apologies if this seems like a pity-party, but I'm hoping to find the support I need right now. Especially since it's now after 4am and I've been up for two hours with my sick little boy (hubby took the early shift and is now snoring in the next room while Bayly struggles for breath next to me in my bed here). Bayly's tonsils are up yet again, his nose is blocked yet again, and he's having 'obstructive sleep apnoea' episodes. He keeps stopping breathing for around 3-7 seconds at a time, 2-3 times a minute. Couple of times I've had to give him a little shake to start again. It's scary. This is what our nights have been like a lot lately. Poor little fella's had things rubbed on him, squirted up his nose, extra doses of Pred. We've had doctors' appointments squeezed in, and now the thinking is to book him in to whip out the offending tonsils, but of course there's a wait list! ;-) I'm really thankful my husband is here tonight (he usually works night shift), so at least he got the earlier shift with Bayly and I got a bit of sleep! :-D Hugs to all, hope the Christmas cards arrive safely to those whose addresses we had. And thanks. Jo Bayly, 6, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Jo, There is simply nothing more frightening than seeing your child not be able to breathe (I have a two year old with asthma too). I feel very sad for you right now --- want to send you a big hug. I have been in that " dark place " where I have felt very alone too. It is so hard to be up all hours and to be in the midst of dealing with your child's medical issues, but then to not be understood by others that are suppose to be offering you love and support....well, that's quite a slap in the face as a mom when you are doing so much. I send my prayers to and you. You can vent here anytime. We DO get it here. We offer only love and support... -Hadley (Isabelle, 4 yrs. JRA) > > > G'day all, > > Long time, no post, hey?! But I've been reading the daily digest, and > feel blessed to be keeping in touch with some very special special > people on this list. > > Truth is, I've been feeling a bit burned by a similar so-called support > system here. Some of the very people who have been sharing this JIA > journey for the past few years have not been very 'supportive' to > others. In fact, I get the distinct impression that some of them have > for whatever reason decided (and I hope to God it's not a conscious > decision) to get something out of their child being ill. I'm not talking > Munchausen-by-proxy or anything, more like a " let's see what we can get > for free " type of thing. And to be honest, it's making me sick to my > stomach. We are all very blessed to have groups or charitable > organisations that offer little things to sometimes take the sting out > of a serious condition, and most people I have met appreciate this most > gratefully... but when people seem to be seeking more and more, or bring > an entourage along, or act put out if they miss out on one of these such > events, well, I just shake my head and feel hurt in my heart. And when > someone reaches out to a support group, and gets criticised by others > for seeking support (or just having a vent), then I have to ask whether > some truly understand the meaning of 'support'. > > So I've been trying to lay low, stick with those who really do have the > children's best interests at heart, and still work towards making a > difference for kids with arthritis the way I know best. Sadly, sometimes > even that feels like it's frowned upon. > > Apologies if this seems like a pity-party, but I'm hoping to find the > support I need right now. Especially since it's now after 4am and I've > been up for two hours with my sick little boy (hubby took the early > shift and is now snoring in the next room while Bayly struggles for > breath next to me in my bed here). Bayly's tonsils are up yet again, his > nose is blocked yet again, and he's having 'obstructive sleep apnoea' > episodes. He keeps stopping breathing for around 3-7 seconds at a time, > 2-3 times a minute. Couple of times I've had to give him a little shake > to start again. It's scary. This is what our nights have been like a > lot lately. Poor little fella's had things rubbed on him, squirted up > his nose, extra doses of Pred. We've had doctors' appointments squeezed > in, and now the thinking is to book him in to whip out the offending > tonsils, but of course there's a wait list! ;-) I'm really thankful my > husband is here tonight (he usually works night shift), so at least he > got the earlier shift with Bayly and I got a bit of sleep! :-D > > Hugs to all, hope the Christmas cards arrive safely to those whose > addresses we had. > > And thanks. > > Jo > > Bayly, 6, extended oligo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 all i can give now are some silly little Cyber hugs just to say Im reading and thinking of you all ((((( ))))))) Issadora On Fri, Dec 19, 2008 at 3:30 PM, hadley_messner <hmessner@...>wrote: > Jo, > > There is simply nothing more frightening than seeing your child not > be able to breathe (I have a two year old with asthma too). I feel > very sad for you right now --- want to send you a big hug. I have > been in that " dark place " where I have felt very alone too. It is so > hard to be up all hours and to be in the midst of dealing with your > child's medical issues, but then to not be understood by others that > are suppose to be offering you love and support....well, that's quite > a slap in the face as a mom when you are doing so much. > > I send my prayers to and you. You can vent here anytime. We > DO get it here. We offer only love and support... > > -Hadley (Isabelle, 4 yrs. JRA) > > > > > > > > G'day all, > > > > Long time, no post, hey?! But I've been reading the daily digest, > and > > feel blessed to be keeping in touch with some very special special > > people on this list. > > > > Truth is, I've been feeling a bit burned by a similar so-called > support > > system here. Some of the very people who have been sharing this JIA > > journey for the past few years have not been very 'supportive' to > > others. In fact, I get the distinct impression that some of them > have > > for whatever reason decided (and I hope to God it's not a conscious > > decision) to get something out of their child being ill. I'm not > talking > > Munchausen-by-proxy or anything, more like a " let's see what we can > get > > for free " type of thing. And to be honest, it's making me sick to > my > > stomach. We are all very blessed to have groups or charitable > > organisations that offer little things to sometimes take the sting > out > > of a serious condition, and most people I have met appreciate this > most > > gratefully... but when people seem to be seeking more and more, or > bring > > an entourage along, or act put out if they miss out on one of these > such > > events, well, I just shake my head and feel hurt in my heart. And > when > > someone reaches out to a support group, and gets criticised by > others > > for seeking support (or just having a vent), then I have to ask > whether > > some truly understand the meaning of 'support'. > > > > So I've been trying to lay low, stick with those who really do have > the > > children's best interests at heart, and still work towards making a > > difference for kids with arthritis the way I know best. Sadly, > sometimes > > even that feels like it's frowned upon. > > > > Apologies if this seems like a pity-party, but I'm hoping to find > the > > support I need right now. Especially since it's now after 4am and > I've > > been up for two hours with my sick little boy (hubby took the early > > shift and is now snoring in the next room while Bayly struggles for > > breath next to me in my bed here). Bayly's tonsils are up yet > again, his > > nose is blocked yet again, and he's having 'obstructive sleep > apnoea' > > episodes. He keeps stopping breathing for around 3-7 seconds at a > time, > > 2-3 times a minute. Couple of times I've had to give him a little > shake > > to start again. It's scary. This is what our nights have been > like a > > lot lately. Poor little fella's had things rubbed on him, squirted > up > > his nose, extra doses of Pred. We've had doctors' appointments > squeezed > > in, and now the thinking is to book him in to whip out the offending > > tonsils, but of course there's a wait list! ;-) I'm really thankful > my > > husband is here tonight (he usually works night shift), so at least > he > > got the earlier shift with Bayly and I got a bit of sleep! :-D > > > > Hugs to all, hope the Christmas cards arrive safely to those whose > > addresses we had. > > > > And thanks. > > > > Jo > > > > Bayly, 6, extended oligo > > > > > -- " How exactly does one become a butterfly? You must want to fly so badly that you are willing to give up being a caterpillar. " - Trina us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2008 Report Share Posted December 22, 2008 Hi Jo! I was just thinking of you guys the other day, and realizing you hadn't posted in awhile. Sorry to hear you're having some troubles, and I fully understand the need to sometimes just step away for a bit. I am glad you feel comfortable to post your " vent " here - definitely not a pity party my dear! Having been involved with lots of different volunteer type organizations myself over the years, I can completely understand how you feel. I cannot understand criticizing someone for looking for support. If you can't help the person, or question their motives, the best thing in my opinion is to just not speak (or post). The old " if you can't say something nice... " thing. I hope things improve for you soon in that department. On to the tonsils- we had the exact same thing with my youngest. It is so scary to hear them stop breathing like that. Thank God, once it was discovered we were able to get them out quickly. It was the best thing we ever did. She was able to sleep through the night and was much better rested for school. She had probably had the problem for quite awhile when we realized what was happening. We made a sleep tape (recorded the sounds she made while sleeping) and brought it in to the ear, nose, throat specialist. One listen and she diagnosed it and the operation was scheduled for the next week. Having the tape when we went in for the first visit really helped. I recommend getting the tonsils out. Please let us know how things are going. I am sending out my cards this week, so hopefully you will get it soon! Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of Jo & Grant Sent: Friday, December 19, 2008 11:24 AM Subject: bit bewildered here G'day all, Long time, no post, hey?! But I've been reading the daily digest, and feel blessed to be keeping in touch with some very special special people on this list. Truth is, I've been feeling a bit burned by a similar so-called support system here. Some of the very people who have been sharing this JIA journey for the past few years have not been very 'supportive' to others. In fact, I get the distinct impression that some of them have for whatever reason decided (and I hope to God it's not a conscious decision) to get something out of their child being ill. I'm not talking Munchausen-by-proxy or anything, more like a " let's see what we can get for free " type of thing. And to be honest, it's making me sick to my stomach. We are all very blessed to have groups or charitable organisations that offer little things to sometimes take the sting out of a serious condition, and most people I have met appreciate this most gratefully... but when people seem to be seeking more and more, or bring an entourage along, or act put out if they miss out on one of these such events, well, I just shake my head and feel hurt in my heart. And when someone reaches out to a support group, and gets criticised by others for seeking support (or just having a vent), then I have to ask whether some truly understand the meaning of 'support'. So I've been trying to lay low, stick with those who really do have the children's best interests at heart, and still work towards making a difference for kids with arthritis the way I know best. Sadly, sometimes even that feels like it's frowned upon. Apologies if this seems like a pity-party, but I'm hoping to find the support I need right now. Especially since it's now after 4am and I've been up for two hours with my sick little boy (hubby took the early shift and is now snoring in the next room while Bayly struggles for breath next to me in my bed here). Bayly's tonsils are up yet again, his nose is blocked yet again, and he's having 'obstructive sleep apnoea' episodes. He keeps stopping breathing for around 3-7 seconds at a time, 2-3 times a minute. Couple of times I've had to give him a little shake to start again. It's scary. This is what our nights have been like a lot lately. Poor little fella's had things rubbed on him, squirted up his nose, extra doses of Pred. We've had doctors' appointments squeezed in, and now the thinking is to book him in to whip out the offending tonsils, but of course there's a wait list! ;-) I'm really thankful my husband is here tonight (he usually works night shift), so at least he got the earlier shift with Bayly and I got a bit of sleep! :-D Hugs to all, hope the Christmas cards arrive safely to those whose addresses we had. And thanks. Jo Bayly, 6, extended oligo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 Hi Michele - and everyone else who's got in touch with us here and privately [] Thanks for the response, I knew I could count on you guys to send some support and love! I have simply tried to offer my support when I think it would be wanted, and drawn it from those who I feel are genuine with theirs. It just hurts when things like this happen amongst 'friends'. We've had a couple more sleepless nights since I last posted. The trouble is getting into the ENT specialist to have him request the op. We did see him Dec 27 '07, and while he thought Bayly's tonsils were " juicy " and way larger than normal, he wanted a sleep test to see if there was sufficient apnoea to warrant removal. So we did that about June this year which wasn't 100% accurate, due to technical problems at the hospital, and Bayly being awake most of the night due to the totally different sleep set-up. So the ENT decided that he'd wait and see. Anyway, long story short- I videoed Bayly on my camera 'phone a few weeks ago, took it to the Paediatrician who immediately said he'd definitely recommend a tonsilectomy (spelling?). Then my 'phone died in spectacular fashion, erasing the SIM card as it went, including the footage. So I borrowed a friend's phone to film Bay last Friday night, and have it ready to go again for the doctor....whenever we can get in! It IS scary, I'm getting even less sleep than usual (and this is coming from a chronic insomniac LOL!). I appreciate the suggestions that've come from the group here, and we're trying everything for Bayly. Poor little mite is cactus the day after these bad nights. And grumpy to go with it, understandably. Oh and to add more fun to the mix- his best friends from Kindy are currently covered in Chickenpox, so we're watching out for that too now. *sigh* As another mum said to me the other day- JIA: the gift that keeps on giving!! [] BIG Christmas Hugs to all our friends!!!! Tis Christmas Eve here, and the fat man in red rides again tonight! Glad to hear that the cards are arriving. It's so weird to chat with friends in amidst snowstorms, while our kids play in the pool. [] Jo Bayly, 6, extended oligo > Hi Jo! I was just thinking of you guys the other day, and realizing you> hadn't posted in awhile. Sorry to hear you're having some troubles, and> I fully understand the need to sometimes just step away for a bit. I am> glad you feel comfortable to post your " vent " here - definitely not a> pity party my dear! Having been involved with lots of different> volunteer type organizations myself over the years, I can completely> understand how you feel. I cannot understand criticizing someone for > looking for support. If you can't help the person, or question their> motives, the best thing in my opinion is to just not speak (or post).> The old " if you can't say something nice... " thing. I hope things> improve for you soon in that department. > > On to the tonsils- we had the exact same thing with my youngest. It is> so scary to hear them stop breathing like that. Thank God, once it was> discovered we were able to get them out quickly. It was the best thing> we ever did. She was able to sleep through the night and was much better> rested for school. She had probably had the problem for quite awhile> when we realized what was happening. We made a sleep tape (recorded the> sounds she made while sleeping) and brought it in to the ear, nose,> throat specialist. One listen and she diagnosed it and the operation was> scheduled for the next week. Having the tape when we went in for the> first visit really helped. I recommend getting the tonsils out. > > Please let us know how things are going. I am sending out my cards this> week, so hopefully you will get it soon! Michele ( 21, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2008 Report Share Posted December 23, 2008 JIA- The gift that keeps on giving!! OMG... ROFL!!!!!! LOLOL hahahaha... gtrrrrrreat!!!! It's so true.... I hope he gets the surgery soon. I had my tonsils out for the same reasons..kept getting tonsillitis and strep over and over and over again.... it was horrible.... My mom said i never even bothered to cry even as a baby with my ear infections and throat infections... she knew I was sick b/c I didn't eat ... =/ They took my tonsils and adenoids out when i was aorund 7 and apparently a big infection was hiden behind my tonsils even at that time! Mine were big and 'juicy' apparently as well... yuk.... I don't remember much about the surgery .... i remember the gas and them flavoring it with Mint of all things I picked that... I will never ever forget that sensation... I felt like i had mint coming out of every fascial orfice! It was 'crazy making.' Tons of ice pops after, juice and jello.... and never again did i have a serious infection.... tonsils never 'grew back' or any of the other wild stuff I have heard out there. No adenoids either.... no snoring.. wheeee lol. Urgh about the Pox!! Hope he doesn't get those on top of all else..... again about the gift that keeps on giving.... i got pox but we never knew about it somehow... but lattter I got shingles... and that we knew about... Ouch! Immune compromised sucks.... That's pretty funny about the camera phone.. eracing the card and all.. sounds like something I would do!!! If they have to do a sleep test again, could hey arrange to do it a your home? Or in a home like setting? I Know that they do that at some places??? I had the sameissue as Bayly last time I had a sleep study. It was in a hospital... and I just couldn't go to sleep at all..... I thought it was a waste in the end because I didn't really get any sleep but I know some places hve really nice comfortable set ups that make people feel much more relaxed and able to sleep like they are going off on a little vacation or something... Anyways good fortune and keep us all updated please.... Issadora On Tue, Dec 23, 2008 at 2:20 PM, Jo & Grant <joking70@...> wrote: > > Hi Michele - and everyone else who's got in touch with us here and > privately [] > > Thanks for the response, I knew I could count on you guys to send some > support and love! I have simply tried to offer my support when I think > it would be wanted, and drawn it from those who I feel are genuine with > theirs. It just hurts when things like this happen amongst 'friends'. > > We've had a couple more sleepless nights since I last posted. The > trouble is getting into the ENT specialist to have him request the op. > We did see him Dec 27 '07, and while he thought Bayly's tonsils were > " juicy " and way larger than normal, he wanted a sleep test to see if > there was sufficient apnoea to warrant removal. So we did that about > June this year which wasn't 100% accurate, due to technical problems at > the hospital, and Bayly being awake most of the night due to the totally > different sleep set-up. So the ENT decided that he'd wait and see. > > Anyway, long story short- I videoed Bayly on my camera 'phone a few > weeks ago, took it to the Paediatrician who immediately said he'd > definitely recommend a tonsilectomy (spelling?). Then my 'phone died in > spectacular fashion, erasing the SIM card as it went, including the > footage. So I borrowed a friend's phone to film Bay last Friday night, > and have it ready to go again for the doctor....whenever we can get in! > > It IS scary, I'm getting even less sleep than usual (and this is coming > from a chronic insomniac LOL!). I appreciate the suggestions that've > come from the group here, and we're trying everything for Bayly. Poor > little mite is cactus the day after these bad nights. And grumpy to go > with it, understandably. Oh and to add more fun to the mix- his best > friends from Kindy are currently covered in Chickenpox, so we're > watching out for that too now. > > *sigh* As another mum said to me the other day- JIA: the gift that keeps > on giving!! [] > > BIG Christmas Hugs to all our friends!!!! Tis Christmas Eve here, and > the fat man in red rides again tonight! Glad to hear that the cards are > arriving. It's so weird to chat with friends in amidst snowstorms, while > our kids play in the pool. [] > > Jo > > Bayly, 6, extended oligo > > > > Hi Jo! I was just thinking of you guys the other day, and realizing > you> hadn't posted in awhile. Sorry to hear you're having some troubles, > and> I fully understand the need to sometimes just step away for a bit. > I am> glad you feel comfortable to post your " vent " here - definitely > not a> pity party my dear! Having been involved with lots of different> > volunteer type organizations myself over the years, I can completely> > understand how you feel. I cannot understand criticizing someone for > > looking for support. If you can't help the person, or question their> > motives, the best thing in my opinion is to just not speak (or post).> > The old " if you can't say something nice... " thing. I hope things> > improve for you soon in that department. > > > > On to the tonsils- we had the exact same thing with my youngest. It > is> so scary to hear them stop breathing like that. Thank God, once it > was> discovered we were able to get them out quickly. It was the best > thing> we ever did. She was able to sleep through the night and was much > better> rested for school. She had probably had the problem for quite > awhile> when we realized what was happening. We made a sleep tape > (recorded the> sounds she made while sleeping) and brought it in to the > ear, nose,> throat specialist. One listen and she diagnosed it and the > operation was> scheduled for the next week. Having the tape when we went > in for the> first visit really helped. I recommend getting the tonsils > out. > > > > Please let us know how things are going. I am sending out my cards > this> week, so hopefully you will get it soon! Michele ( 21, > spondy) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2008 Report Share Posted December 24, 2008 Hello Jo and Bayly...I hope this finds you in better spirits and Mr.Bayly feeling better. I will say a prayer that gets the lil guy to his tonsil removal and better days ahead. As or the support stuff Jo, I feel your pain. I have been at this stuff since 1998. I have been with the Af, left the Af, went back to the Af and once again I find myself debating what to do. It seems to come at you from both sides sometimes. Sometimes I felt the mission from the Af was worng as I did some of the families. I am here for folks like yourself and your little ones and for the 's , the 's and 's who come behind me. I, too have faced the dilemma of families who did only what they did in the support system for the " freebies " . Very sad. Support can mean many things but dont take advantage of it. We use to have a Holiday Party for our kids and it got to where we only seen?certain families at that time and absolutely no other and some would bring cousins, neighbors, etc. it was too much. Now do not get me wrong we had families who this was their Christmas. We knew who who was.......it gets discouraging but do as I do and remind yourself why you are doing what you are doin and know you are so, so appreciated ...if not by all at least some and it is those some who need you.................. hang tight my friend and have a blessed holiday! Donna Quote Link to comment Share on other sites More sharing options...
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