Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Forwarding this message from Nandini, which somehow came directly to me instead of the group Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Nandini, Wow, twins, congratulations. First off, don't stress. Clubfoot, while being a birth defect, is very treatable. I didn't find out about my son's clubfoot until after he was born. At first this upset me, of course, but now, looking back, I would have probably wanted every test under the sun to confirm that everything else was ok. I would have subjected him and myself to endless worry and tests. Chances are that your child is perfect in every other way. Enjoy the rest of your pregnancy. Take the time to learn as much as you can about the defect. You definitely came to the right group for support and advice. I came here to educate myself about the pros and cons of the different types of treatments. I felt prepared to handle and ask any questions that came up at doctor's visits. I am so happy with my son's treatment and for finding this group. His foot looks great and he didn't need any type of surgery. While there were some challenges in the beginning, now him being in the brace is like second nature. Jordan is doing great. I am so proud of my little man. Chances are he will never remember that he had to wear a brace for the first 4 years of his life. Good luck to you!! Keri 12/30/02 Jordan 8/19/04 left club foot Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Nandini, Congrats!!! Are these your first babies? Talk about instant families! We, too, found out at the 19w U/S. It was a time of stress and tough decisions. Only you can decide what's best to do, test-wise. I had one OB at my practice who told me that it was my " responsibility " to have an amnio now. HA! I hated that woman and almost left the practice because of the pressure she put on me. I left the office that day crying hysterically. We decided to get the quad-screen (a blood test) to see if we had any markers for any other abnormalities before deciding on an amnio. The quad-screen is totally non-invasive but also not a diagnostic test, just a test to assess your risks of other things. My results on that were perfect, so we stopped there. I was very worried about doing anything that carried any risks and was grateful I didn't have to make that tough choice. I still don't know what we would have decided if the quad-screen came back high risk for something... Space issues were definately at play in my case. I have a bicornuate uterus (split in half), and several large fibroid tumors. The baby was sharing 1/2 a womb with a 13-cm fibroid---kind of like twins! In retrospect, the geneticist said her problems (bcf and ulnar deviation of the right hand) were all due to cramped space. Only you can decide what is best to do. However, think beyond the tests. What would you do differently based on the results? What is the value of comfort/knowing for sure everything's ok? Thinking past the tests, evaluating what, if anything, we'd do differently, helped us make peace with our decision and move forward to enjoy the pregnancy. Doctors just base their decisions on odds, and probability, which makes perfect sense when treating many. You are one person (or three now?) so every decision you make is 100% about YOU! Enjoy your pregnancy and make peace with whatever decision you make. You've found the right place to find out about cf treatment and support---welcome! Mommy to Devlin, 1/7/04, Atypical bcf , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 We've all been where you are, don't stress, just educate yourself so your baby can get the proper treatment as soon as possible. Keep reading this board, look at our files, photos, links, etc., too and you'll learn more than you though imaginable about club foot and the treatments available....then hopefully you'll decide like we did that Dr. P's method is the best! s. Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi Nadini, CONGRATULATIONS! I have twins as well, and one of them has a clubfoot too. I found out at the 20-week scan (both, about the twins and the clubfoot). I was more shocked about it being twins than about the clubfoot... They are 2 years old now and are doing fine. I find that having twins is a definite advantage for the clubfoot thing, at least you're not always worrying about developmental delays etc since you have someone for comparison. They have developed exactly the same and you wouldn't be able to tell which child or foot was affect (apart from a minute scar on the heel). He's been treated with the Ponseti method by the way which I think is definitely the way to go. Anyway, I've got to dash now but feel free to email me privately if you like (andreaqq @ yahoo.com). Good luck, with and Alister (*9/02, RCF, Ponseti method, UK) > Re: Re: sores w/ DBB > // allison > > > > > > We too are in healing casts. The first time in > the shoes within > two > > days Aidan had a blister on the inside of one foot > and a blister > on the > > back of the other. This Friday 12/17 we are going > to try the shoes > > again. I'm dreading it and I wish their were > another way. Does he > > actually have a couple of kids wearing these new > shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi Nadini, CONGRATULATIONS! I have twins as well, and one of them has a clubfoot too. I found out at the 20-week scan (both, about the twins and the clubfoot). I was more shocked about it being twins than about the clubfoot... They are 2 years old now and are doing fine. I find that having twins is a definite advantage for the clubfoot thing, at least you're not always worrying about developmental delays etc since you have someone for comparison. They have developed exactly the same and you wouldn't be able to tell which child or foot was affect (apart from a minute scar on the heel). He's been treated with the Ponseti method by the way which I think is definitely the way to go. Anyway, I've got to dash now but feel free to email me privately if you like (andreaqq @ yahoo.com). Good luck, with and Alister (*9/02, RCF, Ponseti method, UK) > Re: Re: sores w/ DBB > // allison > > > > > > We too are in healing casts. The first time in > the shoes within > two > > days Aidan had a blister on the inside of one foot > and a blister > on the > > back of the other. This Friday 12/17 we are going > to try the shoes > > again. I'm dreading it and I wish their were > another way. Does he > > actually have a couple of kids wearing these new > shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 , i totally agree with God not giving us more than we can handle but i heard something that pretty much fits where i have been, am now, and where i am going. God gives us a little more than we can handle because when he does it brings us closer to him. i know there are others that are worse off than me but having to borrow money for enough gas to make it home and to work again has never been in my thoughts. My parents have been wonderful but can only do so much themselves. i am so ready to quite my job, stay home with Logan (not have to pay for daycare) and maybe qualify for Medicade. I would even be willing to sell my truck. And to add to the pile. DH left yesterday to work out of state. Logan started vomiting and vomiting. well needless to say we were in the Emergency Room until 11:30 last night they put an IV in with a drip, drew blood and did a urine test. My poor little guy. He is either going to grow up to hate doctors or be one. went home to find everyone one our road had no power, wasnt gonna freeze my you know what off so off we went to moms house. doing fine know. thanks for listening. sorry i was blabding. a, mom to , , Logan (07/12/04, bicf, serial casting) Gerace cgerace@...> wrote: Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 a, I totally agree. I believe that God always gives us more than we can handle when we are trying to handle it WITHOUT Him. WITH Him, we can handle anything. But without Him? Nothing. He gives us more so we realize how much we need Him and lets us know He is there and wants to help if we just hand it to him. If we stop and realize that through this trial He's actually carrying us, we would stop struggling so much to fix it on our own. The phrase is usually misquoted. God nevers gives us more TEMPTATION than we can handle...but problems and trials? You betcha, because He wants to take care of it for us. We are going to get through this by the grace of God and then look back and think Whooo-hooo what a ride!! How wonderful when others are taking the ride with you! atypical bl cf 10-09-03 , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Keep your chin up a. It can only go up from here. Thank goodness for our moms. I know I depend on mine alot..... dm a Holland pandlholland@...> wrote: , i totally agree with God not giving us more than we can handle but i heard something that pretty much fits where i have been, am now, and where i am going. God gives us a little more than we can handle because when he does it brings us closer to him. i know there are others that are worse off than me but having to borrow money for enough gas to make it home and to work again has never been in my thoughts. My parents have been wonderful but can only do so much themselves. i am so ready to quite my job, stay home with Logan (not have to pay for daycare) and maybe qualify for Medicade. I would even be willing to sell my truck. And to add to the pile. DH left yesterday to work out of state. Logan started vomiting and vomiting. well needless to say we were in the Emergency Room until 11:30 last night they put an IV in with a drip, drew blood and did a urine test. My poor little guy. He is either going to grow up to hate doctors or be one. went home to find everyone one our road had no power, wasnt gonna freeze my you know what off so off we went to moms house. doing fine know. thanks for listening. sorry i was blabding. a, mom to , , Logan (07/12/04, bicf, serial casting) Gerace cgerace@...> wrote: Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 My mom has rearranged her work schedule to go to Houston with me every Monday. We have our little routine. She meets me at my house at 6:30 in the morning. Gets Logan ready and other kids to school while i got to work for a couple of hours so my paycheck wont be so short. Then around 8:45 we head off to Houston. Back to College Station by 5:00. It is a long day but the conversations we have are nice. Praise goes out to my mom. 08/06/90 jess 03/27/94 Logan 07/12/04 bicf, serial casting Dawn-Marie dawnmarie2251@...> wrote: Keep your chin up a. It can only go up from here. Thank goodness for our moms. I know I depend on mine alot..... dm a Holland wrote: , i totally agree with God not giving us more than we can handle but i heard something that pretty much fits where i have been, am now, and where i am going. God gives us a little more than we can handle because when he does it brings us closer to him. i know there are others that are worse off than me but having to borrow money for enough gas to make it home and to work again has never been in my thoughts. My parents have been wonderful but can only do so much themselves. i am so ready to quite my job, stay home with Logan (not have to pay for daycare) and maybe qualify for Medicade. I would even be willing to sell my truck. And to add to the pile. DH left yesterday to work out of state. Logan started vomiting and vomiting. well needless to say we were in the Emergency Room until 11:30 last night they put an IV in with a drip, drew blood and did a urine test. My poor little guy. He is either going to grow up to hate doctors or be one. went home to find everyone one our road had no power, wasnt gonna freeze my you know what off so off we went to moms house. doing fine know. thanks for listening. sorry i was blabding. a, mom to , , Logan (07/12/04, bicf, serial casting) Gerace wrote: Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Moms are awesome!! Mine is a teacher so she had this summer off. She came with me to Iowa for over 8 weeks to stay and help with the kids while saw dr. Ponseti. She chose to take 3 weeks off of the beginning of school year to stay and help. Now that we are back in casts again, grrr, she is driving with me to Iowa from Michigan (7 1/2 hour trip good weather) each week for castings. What would we do without those moms that are so selfless? I sure hope my boys think of me that way someday! I am so glad you have your mom to help you. God is so good to provide us with the help we need to get through anything. atyp bl cf 10-09-03 , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 > Thanks you pretty much put it in a nut shell. I know what i have to do now. Just getting it done will take a little time. Since my DH can not go will they let my mom fly with me at no cost? Just wondering i have never flown before and just a little scared about the whole process. > > a > Logan 07/12/04 bicf serial casting Yes, they'll let your mom go with you. Most of the patients I have flown with bring someone along with them. I was afraid of flying in small planes. I have flown many times in jets, but never in a four-seater. But the Angel Flight pilots I have met, and I've met quite a few since we had to go for weekly casting, are all very experienced and very cautious. If the weather is iffy they won't fly. Plus, if it's an Angel Flight the major airports along the way keep track of your location at all times. The pilots let you wear headphones so you can hear them talking and the control towers talking. You can also communicate with the pilots that way. One pilot told me that flying in a small plane has the same amount of risk as riding a motorcycle. That's not too bad really. The way I look at it is that if it means the difference between seeing a Ponseti doctor or not it's worth it to me to fly Angel Flight. Their website is www.angelflight.org and there's a place to click for the part of the country you live in. Good luck and keep us posted. I was in your same shoes, it was 4 days before 's scheduled surgery when I found this group. They convinced me to cancel the surgery and wait for the Ponseti doctor to see us. I have absolutely no regrets, especially when I look at my baby's perfect little feet. and 11/10/03 bilateral clubfeet dbb 23/7 Quote Link to comment Share on other sites More sharing options...
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