Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 GlacierHi all, well here I am. Amazing what a good night's sleep will do for you but since the wind was howling through the window sounding like angry arguing in muffled voices and the roof turbine was spinning an ear splitting squeek (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to grease it, can you imagine?).....it's amazing I got any sleep at all but I do feel better today. I'm not mad at God, and I'm not mad at the baby nor regret that he is coming, it's just the situation in general. Damn the bad luck, that's all. I'm sad he has to endure the mess of it, I'm sad I've given this to him, and selfishly, I'm sad for myself that I won't get just one normal kid - I mean I won't ever get to enjoy just one normal state of infancy. His infancy is used up on castings and braces for 23 hours a day then 18 hours a day and eventually by the time he's a toddler it's nights, but the whole infant stage is robbed from the both of us. I feel like what the hell, I've already paid my dues here, haven't I? Ain't it some one else's turn? The bright side, of course, look at the bright side, he appears otherwise healthy with no other abnormalities. I know how to get him the best care. " IT could be worse " although I hate hearing that today I know it's true and for that I'm thankful. The doctor, a very nice one, did the scan and didn't hestitate to give us his results so we're not waiting on his written report. He pointed things out thoroughly to us, the bones, the angles of the bones, everything proving his findings. He was interested in hearing about Dr. Ponseti, knowing nothing of it and when my dh mentioned few USA doctors use it the doc there immediately said, " You know why, don't you? " We said Money and he grinned and said " unfortunately " . Anyway, today is a new day and from here it is onward and upwards. Thank you all for your shoulders and words and prayers. I know it will be OK, I just really had my sites set on straight feet, higher than I realized, so I crashed kind of hard when I got the news yesterday. s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 Tell me about St. Louis, . Is there a Mc House there? s. Re: here I am Oh ee, it is so like you to be your usual self after just one night feeling down. It is certainly understandable for you to have all of these feelings - I can't imagine anyone not having them. You seem like such a tough cookie, I know you and baby boy will come through this all the stronger for it, and and Everett will be sure to be a big help - and you can relax and love on that baby for a couple weeks after he is born before you have to start messing with the casts. And don't you forget my offer - you come to St. Louis and I'm here for you. Thinking of you, > > GlacierHi all, well here I am. > > Amazing what a good night's sleep will do for you but since the wind was howling through the window sounding like angry arguing in muffled voices and the roof turbine was spinning an ear splitting squeek (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to grease it, can you imagine?).....it's amazing I got any sleep at all but I do feel better today. > > I'm not mad at God, and I'm not mad at the baby nor regret that he is coming, it's just the situation in general. Damn the bad luck, that's all. I'm sad he has to endure the mess of it, I'm sad I've given this to him, and selfishly, I'm sad for myself that I won't get just one normal kid - I mean I won't ever get to enjoy just one normal state of infancy. His infancy is used up on castings and braces for 23 hours a day then 18 hours a day and eventually by the time he's a toddler it's nights, but the whole infant stage is robbed from the both of us. I feel like what the hell, I've already paid my dues here, haven't I? Ain't it some one else's turn? > > The bright side, of course, look at the bright side, he appears otherwise healthy with no other abnormalities. I know how to get him the best care. " IT could be worse " although I hate hearing that today I know it's true and for that I'm thankful. The doctor, a very nice one, did the scan and didn't hestitate to give us his results so we're not waiting on his written report. He pointed things out thoroughly to us, the bones, the angles of the bones, everything proving his findings. He was interested in hearing about Dr. Ponseti, knowing nothing of it and when my dh mentioned few USA doctors use it the doc there immediately said, " You know why, don't you? " We said Money and he grinned and said " unfortunately " . > > Anyway, today is a new day and from here it is onward and upwards. Thank you all for your shoulders and words and prayers. I know it will be OK, I just really had my sites set on straight feet, higher than I realized, so I crashed kind of hard when I got the news yesterday. > s. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 We'll be praying for you DeeDee California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Well , not sure. If we go with Dr. Dobbs (or Ponseti, actually) what will probably happen is dh will drop me off in which-ever city and go back home. Around Iowa City he says he's not worried about leaving me, it's a small town and we know our way around. But St. Louis is a big city and he's concerned about leaving us there " with out a man " . It would be me with two, possibly three kids finding my way around and he said he's afraid of me even stopping to buy gas.... understand I'm not afraid, I've lived plenty in big cities but he hasn't. Is there a decent public transit system that could carry us around? Anyway - another question - how does the whole Shriner's thing work? Do I need a sponsor or something to qualify for their care? What things do they cover ($) and what things would they not cover? If you would let me know which RMD is near the Shriners I could call them directly for info about that. Just anything other tips and things you can think of to pass along I appreciate. s. Re: here I am Yes, there is a Mc house, there are two in fact. The one is right by Children's Hospital. There is not a RMH near Shriner's though. I am not sure what accomodations they have for visiting families, but I can certainly find out for you. What else do you want to know? > > > > GlacierHi all, well here I am. > > > > Amazing what a good night's sleep will do for you but since the wind > was howling through the window sounding like angry arguing in muffled > voices and the roof turbine was spinning an ear splitting squeek > (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to > grease it, can you imagine?).....it's amazing I got any sleep at all > but I do feel better today. > > > > I'm not mad at God, and I'm not mad at the baby nor regret that he > is coming, it's just the situation in general. Damn the bad luck, > that's all. I'm sad he has to endure the mess of it, I'm sad I've > given this to him, and selfishly, I'm sad for myself that I won't get > just one normal kid - I mean I won't ever get to enjoy just one > normal state of infancy. His infancy is used up on castings and > braces for 23 hours a day then 18 hours a day and eventually by the > time he's a toddler it's nights, but the whole infant stage is robbed > from the both of us. I feel like what the hell, I've already paid my > dues here, haven't I? Ain't it some one else's turn? > > > > The bright side, of course, look at the bright side, he appears > otherwise healthy with no other abnormalities. I know how to get him > the best care. " IT could be worse " although I hate hearing that today > I know it's true and for that I'm thankful. The doctor, a very nice > one, did the scan and didn't hestitate to give us his results so we're > not waiting on his written report. He pointed things out thoroughly > to us, the bones, the angles of the bones, everything proving his > findings. He was interested in hearing about Dr. Ponseti, knowing > nothing of it and when my dh mentioned few USA doctors use it the doc > there immediately said, " You know why, don't you? " We said Money and > he grinned and said " unfortunately " . > > > > Anyway, today is a new day and from here it is onward and upwards. > Thank you all for your shoulders and words and prayers. I know it > will be OK, I just really had my sites set on straight feet, higher > than I realized, so I crashed kind of hard when I got the news yesterday. > > s. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Faith, Having one cf is odd enough; having two gets weird and having three of course is just plain bonkers but you know how rare it is. Look how many people have crossed this board with multiple children and only one of them had cf. What I mean is, don't let a " maybe " dictate your desire to have more children if that makes sense. Like every one has told me, it's not like we don't know how to deal with it - and it's a fairly minor thing all in all....anyway....... I just mean to say I hope fear won't be your guide. s. That fear may keep me form having a second child. Faith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 ee, I am in tears reading your post. I remember that exact feeling when baby #2 had clubfoot as well. I know that feeling in the pit of your stomach... I JUST WANT ONE baby without a damn cast on. I wish I could be there for you. Really if there is anything I can do, please, please let me know. www.pediatric-orthopedic-foundation.org Our mission: " To provide support and assistance through education and financial assistance to families and their children who have orthopedic disabilities or orthopedic birth defects. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Oh ee, it is so like you to be your usual self after just one night feeling down. It is certainly understandable for you to have all of these feelings - I can't imagine anyone not having them. You seem like such a tough cookie, I know you and baby boy will come through this all the stronger for it, and and Everett will be sure to be a big help - and you can relax and love on that baby for a couple weeks after he is born before you have to start messing with the casts. And don't you forget my offer - you come to St. Louis and I'm here for you. Thinking of you, > > GlacierHi all, well here I am. > > Amazing what a good night's sleep will do for you but since the wind was howling through the window sounding like angry arguing in muffled voices and the roof turbine was spinning an ear splitting squeek (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to grease it, can you imagine?).....it's amazing I got any sleep at all but I do feel better today. > > I'm not mad at God, and I'm not mad at the baby nor regret that he is coming, it's just the situation in general. Damn the bad luck, that's all. I'm sad he has to endure the mess of it, I'm sad I've given this to him, and selfishly, I'm sad for myself that I won't get just one normal kid - I mean I won't ever get to enjoy just one normal state of infancy. His infancy is used up on castings and braces for 23 hours a day then 18 hours a day and eventually by the time he's a toddler it's nights, but the whole infant stage is robbed from the both of us. I feel like what the hell, I've already paid my dues here, haven't I? Ain't it some one else's turn? > > The bright side, of course, look at the bright side, he appears otherwise healthy with no other abnormalities. I know how to get him the best care. " IT could be worse " although I hate hearing that today I know it's true and for that I'm thankful. The doctor, a very nice one, did the scan and didn't hestitate to give us his results so we're not waiting on his written report. He pointed things out thoroughly to us, the bones, the angles of the bones, everything proving his findings. He was interested in hearing about Dr. Ponseti, knowing nothing of it and when my dh mentioned few USA doctors use it the doc there immediately said, " You know why, don't you? " We said Money and he grinned and said " unfortunately " . > > Anyway, today is a new day and from here it is onward and upwards. Thank you all for your shoulders and words and prayers. I know it will be OK, I just really had my sites set on straight feet, higher than I realized, so I crashed kind of hard when I got the news yesterday. > s. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 You and your family is in our thoughts and prayers also. Re: here I am We'll be praying for you DeeDee California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Aw ee... My thoughts are with you. And if it were me I'd be taking a few weeks to just enjoy having a 'normal' kid before dealing with casts and such. You know the drill so it makes it much more of a relaxed process for you. Hang in there. Chris here I am GlacierHi all, well here I am. Amazing what a good night's sleep will do for you but since the wind was howling through the window sounding like angry arguing in muffled voices and the roof turbine was spinning an ear splitting squeek (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to grease it, can you imagine?).....it's amazing I got any sleep at all but I do feel better today. I'm not mad at God, and I'm not mad at the baby nor regret that he is coming, it's just the situation in general. Damn the bad luck, that's all. I'm sad he has to endure the mess of it, I'm sad I've given this to him, and selfishly, I'm sad for myself that I won't get just one normal kid - I mean I won't ever get to enjoy just one normal state of infancy. His infancy is used up on castings and braces for 23 hours a day then 18 hours a day and eventually by the time he's a toddler it's nights, but the whole infant stage is robbed from the both of us. I feel like what the hell, I've already paid my dues here, haven't I? Ain't it some one else's turn? The bright side, of course, look at the bright side, he appears otherwise healthy with no other abnormalities. I know how to get him the best care. " IT could be worse " although I hate hearing that today I know it's true and for that I'm thankful. The doctor, a very nice one, did the scan and didn't hestitate to give us his results so we're not waiting on his written report. He pointed things out thoroughly to us, the bones, the angles of the bones, everything proving his findings. He was interested in hearing about Dr. Ponseti, knowing nothing of it and when my dh mentioned few USA doctors use it the doc there immediately said, " You know why, don't you? " We said Money and he grinned and said " unfortunately " . Anyway, today is a new day and from here it is onward and upwards. Thank you all for your shoulders and words and prayers. I know it will be OK, I just really had my sites set on straight feet, higher than I realized, so I crashed kind of hard when I got the news yesterday. s. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2005 Report Share Posted November 16, 2005 Yes, there is a Mc house, there are two in fact. The one is right by Children's Hospital. There is not a RMH near Shriner's though. I am not sure what accomodations they have for visiting families, but I can certainly find out for you. What else do you want to know? > > > > GlacierHi all, well here I am. > > > > Amazing what a good night's sleep will do for you but since the wind > was howling through the window sounding like angry arguing in muffled > voices and the roof turbine was spinning an ear splitting squeek > (Chriss wouldn't go up in the night and 20 degrees and 70 mph winds to > grease it, can you imagine?).....it's amazing I got any sleep at all > but I do feel better today. > > > > I'm not mad at God, and I'm not mad at the baby nor regret that he > is coming, it's just the situation in general. Damn the bad luck, > that's all. I'm sad he has to endure the mess of it, I'm sad I've > given this to him, and selfishly, I'm sad for myself that I won't get > just one normal kid - I mean I won't ever get to enjoy just one > normal state of infancy. His infancy is used up on castings and > braces for 23 hours a day then 18 hours a day and eventually by the > time he's a toddler it's nights, but the whole infant stage is robbed > from the both of us. I feel like what the hell, I've already paid my > dues here, haven't I? Ain't it some one else's turn? > > > > The bright side, of course, look at the bright side, he appears > otherwise healthy with no other abnormalities. I know how to get him > the best care. " IT could be worse " although I hate hearing that today > I know it's true and for that I'm thankful. The doctor, a very nice > one, did the scan and didn't hestitate to give us his results so we're > not waiting on his written report. He pointed things out thoroughly > to us, the bones, the angles of the bones, everything proving his > findings. He was interested in hearing about Dr. Ponseti, knowing > nothing of it and when my dh mentioned few USA doctors use it the doc > there immediately said, " You know why, don't you? " We said Money and > he grinned and said " unfortunately " . > > > > Anyway, today is a new day and from here it is onward and upwards. > Thank you all for your shoulders and words and prayers. I know it > will be OK, I just really had my sites set on straight feet, higher > than I realized, so I crashed kind of hard when I got the news yesterday. > > s. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 I'm sorry Faith, you really do have bigger fish to fry than just club foot, I didn't realize that. I can see that making the choice much harder. And it's OK, we can make this email about you s. Re: here I am Everything I just wrote simply disappeared.... Anyway, to be short, since I'm now short on time. I know, ee.... I mean my rational mind knows. It's just Gabe was born with two idiopathic, congenital defects (he also had prematurely fused sutures in his skull) along with some minor hydronephrosis. I guess I'm just paranoid that I have bad genes... (Craniosynostosis has the exact same statistics as clubfoot) I was so shell-shocked when he was born --- I didn't know about his skull although it was , in hindsight, pretty apparent in U/S. Now, I'm terrified all the time about safety stuff and Gabe... I so want to chill out and let him be a normal kid... Which he pretty much is now -- despite a few gaping holes in his skull(which are supposed to fill back in by the time he's two). Anyway, I just don't know if I KNEW either of these two things would affect my next child if I'd have the personal strength to decide to do it all over again. But I didn't mean to turn this into a " me " email anyway:) I just wanted to tell you that you are very brave and strong. If any child was goign to be born with clubfeet anywhere in the world --- this one has gotten very lucky having you for a mom. --------------------------------- Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 Hey ee, I wish I could give you the biggest hug right now!!! I was catching up and saw it all at once, I started off in tears but as I read on I saw it has already gotten " easier " for you though out the posts. I deffianlty don't think this is some kind of punishment, etc. I think god knows, you know exactly what your doing when it comes to your children and this baby needed to come to you. We all know you are a great mom and such a strong person, if you need to vent or need anything you know you can always ask us. We belong to Shriners in Philadelphia (although they don't do the ponseti method, but once a member the child is one till 18 years old I think). It is completly free, just call tell the situation it may take a few weeks, but if they think they can help you child they accept you and pay for everything, braces, casts, etc...everything!!!! Again if you need anything feel free to e-mail me or let us all know, we will be here for you! I deffianlty agree with who ever said Dr. Dobb's should name the gene after you when he finishes up finding it!!!!! Have you participated in the study? Michele Collin's story at http://www.geocities.com/chele323232 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2005 Report Share Posted November 17, 2005 --- number23 wrote: > Anyway, today is a new day and from here it is onward and upwards. Thank you > all for your shoulders and words and prayers. I know it will be OK, I just > really had my sites set on straight feet, higher than I realized, so I > crashed kind of hard when I got the news yesterday. ((((HUGS)))) ee, I'm sorry to hear you will be dealing with clubfeet again. It is perfectly fine to crash. That is a big piece of news to digest after hoping for straight feet! I cannot imagine three little ones who have clubfeet. What a unique story they'll have. It's okay to have down days, and it's okay to have great days. Try to take each day for what it is. Embrace the feelings, look at them, work with them, and don't beat yourself up about them. When I was pregnant with Grant I had to work through a lot of feelings and emotions, and it was better when I didn't fight them but accepted them as part of the process. I'm still doing that! One day at a time. I'm happy to hear there are no other abnormalities! And congratulations on your baby boy. Joy Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.html Iris (2-01) Spencer (3-03) Grant (9-05) http://www.caringbridge.org/visit/grantphilip __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2005 Report Share Posted November 18, 2005 What are you doing here anyway Faith...aren't you supposed to be cleaning???? hehehehe I'm sorry Faith, you really do have bigger fish to fry than just club foot, I didn't realize that. I can see that making the choice much harder. And it's OK, we can make this email about you > s. > > Re: here I am > > > Everything I just wrote simply disappeared.... Anyway, to be short, since I'm now short on time. I know, ee.... I mean my rational mind knows. It's just Gabe was born with two idiopathic, congenital defects (he also had prematurely fused sutures in his skull) along with some minor hydronephrosis. I guess I'm just paranoid that I have bad genes... (Craniosynostosis has the exact same statistics as clubfoot) I was so shell-shocked when he was born --- I didn't know about his skull although it was , in hindsight, pretty apparent in U/S. Now, I'm terrified all the time about safety stuff and Gabe... I so want to chill out and let him be a normal kid... Which he pretty much is now -- despite a few gaping holes in his skull(which are supposed to fill back in by the time he's two). Anyway, I just don't know if I KNEW either of these two things would affect my next child if I'd have the personal strength to decide to do it all over again. But I didn't mean to turn this into a " me " > email anyway:) I just wanted to tell you that you are very brave and strong. If any child was goign to be born with clubfeet anywhere in the world --- this one has gotten very lucky having you for a mom. > > > > > --------------------------------- > Yahoo! FareChase - Search multiple travel sites in one click. > > Quote Link to comment Share on other sites More sharing options...
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