Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 That is awesome! Thank you Lord. I'm so glad he's doing as well as you say he is. I have to admit I don't know all those words or what they mean, but I am thanful he is doing great!! Good job mom, for hanging in there! Keep pressing on. > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 Hi - Glad to hear is doing well and that the other medical issues he has are all fixable. Isn't it great what our doctors can do today! My son came with other medical issues too besides the clubfoot (all fixable) and we just take one issue at a time. My first born was born with no medical issues and my second got them all. Weird how that works out! The good thing is god doesn't give us more than we can handle! > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 Hi - Glad to hear is doing well and that the other medical issues he has are all fixable. Isn't it great what our doctors can do today! My son came with other medical issues too besides the clubfoot (all fixable) and we just take one issue at a time. My first born was born with no medical issues and my second got them all. Weird how that works out! The good thing is god doesn't give us more than we can handle! > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 I am so glad the surgery went well! Prayers will still keep coming your way! Louisa Rachael 6-27-99 Zoe 2-22-04 RCF FAB Nights > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 I am so glad the surgery went well! Prayers will still keep coming your way! Louisa Rachael 6-27-99 Zoe 2-22-04 RCF FAB Nights > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 I'm glad to hear he's doing well! Sounds like he's keeping you busy, thats for sure. Keep us posted on how he's doing - I love to hear stories with happy endings! Darby Livi bi cf 3.15.04 p/m fab 16/7 > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 I'm glad to hear he's doing well! Sounds like he's keeping you busy, thats for sure. Keep us posted on how he's doing - I love to hear stories with happy endings! Darby Livi bi cf 3.15.04 p/m fab 16/7 > Thanks to everyone who wrote to us! came home on Friday and is doing great. I knew he would, but I was so stressed out! He was out of his shoes for 2 days because they had to put the IV and other equipment in his foot, so I was really nervous about that and kept checking his feet. They look just fine, but he hated when I put his shoes on yesterday, so I was nervous they had relapsed enough to make a difference, but he slept fine. I think he just hated having them on again! The surgery went great. It was to repair his hypospadias and chordee, which basically means his penis (if they let me say that) was curved downward and the urethra was not fully formed so the opening was in the wrong place. This was suppose to be corrected in 2 surgeries but the dr. was able to do it in one with only a 15% chance of another needed. > > He was born with several different problems besides the clubfeet. He had an imperforated anus which was fairly easily corrected with one surgery when he was 16 hours old. After that, he had breathing problems and was found the have tracheal mallacia and tracheal stenosis. The mallacia will go away eventually, although that is what was bothering him after this surgery. It just causes him to sound like a dinosaur or pigeon! The tracheal stenosis was fixed through a surgery where they dilated his airway when he was 4 days old. > > also wears glasses and has since he was 4 months. They thought his optic nerves were small, but are unsure now because being extremely farsighted can make them appear small, so we are not really sure on this yet, but the glasses are really helping him focus. > > He had an MRI last Weds. on his brain and spine because of his anomalies as well has hyperspaticity in his muscles mainly in the neck, back, and hamstrings. They found that his pons located near the brainstem where slightly atrophic. This part receives and sends messages to the rest of the brain, but 's gets a little messed up when they come through; therefore his movement and coordination are slightly off. This shouldn't cause a problem in the long run, but will cause him to have a slow start and difficult until he learns a new skill. He is finally rolling from his tummy to back and with his shoes on from back to belly. He can sit for a limited amount of time. He is getting frustrated though because as an almost 8 month old he wants to do more. > > They also found a syrinx cavity in his spine. This is basically fluid where it shouldn't be, and causes weakness in his arms as well as other things. We now know why he has trouble propping on his belly and when sitting. We are meeting with a neurosurgeon to discuss treatment such as shunting or others. We are trying to avoid a shunt because of their failure rate, so if anyone knows a great site to find doctors with certain qualification that would be great. One I found is in Iowa City, so we may be going there anyway (We were going to go for his feet, but found another dr closer). is currently receiving PT and OT once a week each for one hour at home through First Steps. > > Sorry this is so long, but Kori you asked about 's story! At least you got a medical lesson that covers about every body part! > > Thanks again for all your thoughts and prayers. This site has helped me so much to get through everything. I know we have been through a lot with , but we are so lucky because everything he has is fixable so he will have a happy and productive life! > > > 11/19/04 " No more surgery! " > > > Quote Link to comment Share on other sites More sharing options...
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