Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Tammy, you really have it bad with your doc. To find the nearest CF center please go to http://www.cff.org/chapters_and_care_centers/ Hope there is one that you can reach with your old car. The info about Zithromax you can get at http://www.cff.org/content.cfm?contentID=326 Zithromax is an antibiotic, but for pwcf not it's antibiotic but it's anti-inflammatory properties are important. And it has to be used in combo with an antibiotic like TOBI or Colistin that is effective against Pseudomonas aeruginosa. That your doc won't treat Brittany's PA infection is MALPRACTCE! Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Tammy, you really have it bad with your doc. To find the nearest CF center please go to http://www.cff.org/chapters_and_care_centers/ Hope there is one that you can reach with your old car. The info about Zithromax you can get at http://www.cff.org/content.cfm?contentID=326 Zithromax is an antibiotic, but for pwcf not it's antibiotic but it's anti-inflammatory properties are important. And it has to be used in combo with an antibiotic like TOBI or Colistin that is effective against Pseudomonas aeruginosa. That your doc won't treat Brittany's PA infection is MALPRACTCE! Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2002 Report Share Posted November 23, 2002 Hi Tammy, you really have it bad with your doc. To find the nearest CF center please go to http://www.cff.org/chapters_and_care_centers/ Hope there is one that you can reach with your old car. The info about Zithromax you can get at http://www.cff.org/content.cfm?contentID=326 Zithromax is an antibiotic, but for pwcf not it's antibiotic but it's anti-inflammatory properties are important. And it has to be used in combo with an antibiotic like TOBI or Colistin that is effective against Pseudomonas aeruginosa. That your doc won't treat Brittany's PA infection is MALPRACTCE! Peace Torsten, dad of Fiona 5wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Well, we are heading back to Iowa again. For those of you not familiar, has severe atypical bl cf. He has had one surgery after 6 months of casting with a doctor who said he was doing the ponseti method. Then we were told he had no idea what to do and we headed to Iowa. Dr. P told us due to the severe scar tissue, he couldn't do anything at that time, so we were sent home for a month and a half to go through physical therapy and other home remedies for stretching those scars. He also shared with us he had only seen two other cases as severe as s, one was from bulgaria and the other was from North Carolina, neither of which had had the prior surgery. We went back to Iowa and I remained there with and 3 year old for 8 1/2 weeks of castings and another surgery, this one was a complete release surgery. Previous had only been partial. We just sent Dr. P pictures of 's feet, thankfully two weeks ahead of schedule, and he has responded. He doesn't like what he sees and although there is a doctor here in Michigan that is now working towards the " approved doctor list " , Dr. P doesn't feel comfortable letting anyone else do the casting, no matter how much they consult with him or how trained they are with him. jason has just started pulling himself up to standing and he is 14 months old. He's only been in the shoes 2 months. Now that we are finally that far, we have to go back to casts and Dr. P wants to see us next monday. oiy!!! We will be driving down for the typical five day cast changes, staying the night before the appt. Please keep us in your prayers. This was so heartbreaking as we were finally making progress, in standing and pulling himself up! I strongly recommend talking to Ponseti about getting those wedges put on if your child has tight heel cords even after the tenotomy. I will be showing those to . My PT was just amazed that more people weren't having problems with the stretching of the heel cords. If we had gotten those wedges on sooner I don't think we would have had this set back. Hindsight I know, but frustrating nontheless. Thanks for all your encouragement here and I will let you know how it all goes! 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Oh , I'm so sorry! Hang in there, chin up & remember this too shall pass.. Your family will be in my prayers. Onward!!! (Just keep telling yourself that during the hard times, it reminds you there is a better tomorrow). Wold alicialwold@...> wrote: Well, we are heading back to Iowa again. For those of you not familiar, has severe atypical bl cf. He has had one surgery after 6 months of casting with a doctor who said he was doing the ponseti method. Then we were told he had no idea what to do and we headed to Iowa. Dr. P told us due to the severe scar tissue, he couldn't do anything at that time, so we were sent home for a month and a half to go through physical therapy and other home remedies for stretching those scars. He also shared with us he had only seen two other cases as severe as s, one was from bulgaria and the other was from North Carolina, neither of which had had the prior surgery. We went back to Iowa and I remained there with and 3 year old for 8 1/2 weeks of castings and another surgery, this one was a complete release surgery. Previous had only been partial. We just sent Dr. P pictures of 's feet, thankfully two weeks ahead of schedule, and he has responded. He doesn't like what he sees and although there is a doctor here in Michigan that is now working towards the " approved doctor list " , Dr. P doesn't feel comfortable letting anyone else do the casting, no matter how much they consult with him or how trained they are with him. jason has just started pulling himself up to standing and he is 14 months old. He's only been in the shoes 2 months. Now that we are finally that far, we have to go back to casts and Dr. P wants to see us next monday. oiy!!! We will be driving down for the typical five day cast changes, staying the night before the appt. Please keep us in your prayers. This was so heartbreaking as we were finally making progress, in standing and pulling himself up! I strongly recommend talking to Ponseti about getting those wedges put on if your child has tight heel cords even after the tenotomy. I will be showing those to . My PT was just amazed that more people weren't having problems with the stretching of the heel cords. If we had gotten those wedges on sooner I don't think we would have had this set back. Hindsight I know, but frustrating nontheless. Thanks for all your encouragement here and I will let you know how it all goes! 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Thanks! I have found myself repeating over and over and over, " Trust in the One who made him, trust in the One who made him... " that and a glass of wine seems to be helping a lot! hehe! It's amazing though, just when you think you've got this trusting thing down pat...bam! You can just see God up there saying, " don't let go, just keep trusting, I can get you through this. " Thank God, He's stronger than I am. hehe! > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Thanks! I have found myself repeating over and over and over, " Trust in the One who made him, trust in the One who made him... " that and a glass of wine seems to be helping a lot! hehe! It's amazing though, just when you think you've got this trusting thing down pat...bam! You can just see God up there saying, " don't let go, just keep trusting, I can get you through this. " Thank God, He's stronger than I am. hehe! > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Good luck and your definitly in our prayers. I firmly believe that God doesn't give us what we can't handle. KK > > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Absolutely!! He'll always be their for you. He may not answer your requests just as you see fit but their is a reason for his answers. I've never been more faithful as when my son was born at 7months. At 3lbs 2oz he truely is a miracle. It's been a rough road but God has blessed us in so many more ways than disappointed us. He's made us much stronger than we (my husband & I) every thought we could possibly be. It's funny how many people begin to look up to you and admire you when you have to go through something they don't think they could ever do. You do what you have to, it's never a matter of being a hero or doing something out of the ordinary. God knew you were special enough to handle it! Wold alicialwold@...> wrote: Thanks! I have found myself repeating over and over and over, " Trust in the One who made him, trust in the One who made him... " that and a glass of wine seems to be helping a lot! hehe! It's amazing though, just when you think you've got this trusting thing down pat...bam! You can just see God up there saying, " don't let go, just keep trusting, I can get you through this. " Thank God, He's stronger than I am. hehe! > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , I really feel for you & . But at least you're headed to a doc you know has his best interests at heart, and that's half the battle. The other half is knowing that everything will turn out fine in the end. One of these days you'll watch running around a park somewhere, wondering if these days were just a dream! , mommy of: Guinevere, harrison, Ava 8/4/04 right CF DBB 23/7 > > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , I wish you all the best. At least you know that your are in the best hands possible and that whatever needs t be done for will get done. My prayers and thoughts will be with you. Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 _____ From: Wold Sent: Wednesday, December 08, 2004 5:09 PM To: nosurgery4clubfoot Subject: Here we go again! Well, we are heading back to Iowa again. For those of you not familiar, has severe atypical bl cf. He has had one surgery after 6 months of casting with a doctor who said he was doing the ponseti method. Then we were told he had no idea what to do and we headed to Iowa. Dr. P told us due to the severe scar tissue, he couldn't do anything at that time, so we were sent home for a month and a half to go through physical therapy and other home remedies for stretching those scars. He also shared with us he had only seen two other cases as severe as s, one was from bulgaria and the other was from North Carolina, neither of which had had the prior surgery. We went back to Iowa and I remained there with and 3 year old for 8 1/2 weeks of castings and another surgery, this one was a complete release surgery. Previous had only been partial. We just sent Dr. P pictures of 's feet, thankfully two weeks ahead of schedule, and he has responded. He doesn't like what he sees and although there is a doctor here in Michigan that is now working towards the " approved doctor list " , Dr. P doesn't feel comfortable letting anyone else do the casting, no matter how much they consult with him or how trained they are with him. jason has just started pulling himself up to standing and he is 14 months old. He's only been in the shoes 2 months. Now that we are finally that far, we have to go back to casts and Dr. P wants to see us next monday. oiy!!! We will be driving down for the typical five day cast changes, staying the night before the appt. Please keep us in your prayers. This was so heartbreaking as we were finally making progress, in standing and pulling himself up! I strongly recommend talking to Ponseti about getting those wedges put on if your child has tight heel cords even after the tenotomy. I will be showing those to . My PT was just amazed that more people weren't having problems with the stretching of the heel cords. If we had gotten those wedges on sooner I don't think we would have had this set back. Hindsight I know, but frustrating nontheless. Thanks for all your encouragement here and I will let you know how it all goes! 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , I am so sorry to hear that has to go back into casts. I can only imagine how frustrated you must be. Just remember that is in the best hands possible. You can trust Dr. P. completely. My thoughts and prayers are with you and your family. Give a big hug for me. We will just miss you guys. Claire has an appointment with Dr. P. on Friday. We are leaving tomorrow afternoon. Just keep in mind that the day will soon be here when and Claire will be chasing each other up and down the hallway of the RM house, just like and Audrey. Keep your spirits high. You are a very strong person. Love, > > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 , Sorry to hear your news! sounds like such a little trooper!! Our thoughts are with you! & Grace > > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 and good luck we'll be thinking of you.Hope everything goes well.Keep us posted Jen and Re: Here we go again! , Sorry to hear your news! sounds like such a little trooper!! Our thoughts are with you! & Grace > > Well, we are heading back to Iowa again. > > For those of you not familiar, has severe atypical bl cf. He > has had one surgery after 6 months of casting with a doctor who said > he was doing the ponseti method. Then we were told he had no idea > what to do and we headed to Iowa. Dr. P told us due to the severe > scar tissue, he couldn't do anything at that time, so we were sent > home for a month and a half to go through physical therapy and other > home remedies for stretching those scars. He also shared with us he > had only seen two other cases as severe as s, one was from > bulgaria and the other was from North Carolina, neither of which had > had the prior surgery. We went back to Iowa and I remained there with > and 3 year old for 8 1/2 weeks of castings and another surgery, > this one was a complete release surgery. Previous had only been > partial. > > We just sent Dr. P pictures of 's feet, thankfully two weeks > ahead of schedule, and he has responded. He doesn't like what he sees > and although there is a doctor here in Michigan that is now working > towards the " approved doctor list " , Dr. P doesn't feel comfortable > letting anyone else do the casting, no matter how much they consult > with him or how trained they are with him. > > jason has just started pulling himself up to standing and he is 14 > months old. He's only been in the shoes 2 months. Now that we are > finally that far, we have to go back to casts and Dr. P wants to see > us next monday. oiy!!! We will be driving down for the typical five > day cast changes, staying the night before the appt. > > Please keep us in your prayers. This was so heartbreaking as we were > finally making progress, in standing and pulling himself up! I > strongly recommend talking to Ponseti about getting those wedges put > on if your child has tight heel cords even after the tenotomy. I will > be showing those to . My PT was just amazed that more people > weren't having problems with the stretching of the heel cords. If we > had gotten those wedges on sooner I don't think we would have had this > set back. Hindsight I know, but frustrating nontheless. > > Thanks for all your encouragement here and I will let you know how it > all goes! > > > 10-09-03 atypical bl cf Quote Link to comment Share on other sites More sharing options...
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