Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Cy, Great news on holding mostly stable. It is a bit concerning that the C3 has declined again, but we will rest on the good news for now. Give him a big hug and tell him how proud I am of his grades. Congratulations on being asked to join the board too! I am sure you will be a great asset for them. My youngest was very involved in children's theater and absolutely loved it as much as does now. She is even taking a few drama classes while she is at USC as electives because she still loves it so much. It is so great has an outlet where he can really express himself, excel and enjoy himself so much. You are so blessed to have such a great son! In a message dated 7/8/2004 11:36:12 PM Eastern Daylight Time, " Cy Webb " writes: >I've been meaning to check in for the longest time, but finally have a few >minutes to do so! 's got a performance/cast party, so I've got a bit >of time. For the new people, does not have IgAN, but MPGN, which is >a generally a far more aggressive disease than IgAN. It is very rare, so we >hang here with you guys! What follows, is a rather long post - which will >hopefully be helpful to the new parents. > >School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was >supposed to be a B+, but -the-negotiator managed to get the teacher to >upgrade it to an A- (where he gets those skills, I don't know - however >I've begun to take lessons from him. He tells me (and he's probably right) >that I escalate into nastyness too fast). ly, I don't give too many >hoots about grades. It's like once his kidney problems were diagnosed, he >turned into this straight A student... I'm sure there's a connection there. > >Right now he is spending 12 hours/day at the theater. The summer began with >a bang when at the veritable age of 13, they let him stage manage a >production of 1001 Dalmatians (I HATE DISNEY! However, that's another >story). This was the first time Disney granted rights to an amateur >theater. From there, he was cast as the Grand Duke in a production of >Cinderella (closes tomorrow) - in which he really helped carry the show. >He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) >and is auditioning for a tiny part in Macbeth later in the summer. Very >unexpectedly, I was invited to join the board of the theater. 's >been involved with this place for 5 years. Other than helping in the >costume shop periodically, I've been very much a drop-and-run parent so it >rather surprised me. I'm feeling plunged into the miasma of local city >politics - which is perversely fascinating. > >In the very few minutes that he's not at the theater, 's working on >learning some geography with an eye to participating in the National >Geographic Geography Bee next year. What is the capital of Lichtenstien? >Where is San Marino? What mountains run down the Italian peninsula? What >mountains are in northern Italy? He may not win (possibly too Eurocentric), >but we're having a blast with this. > >Kidney numbers are holding more or less stable. Got labs today. C3 (an >MPGN thing, not an IgAN thing) went down (this is the 3rd month of >decline), which is a little worrisome, but continues to be low-normal. We >went through this before when his C3 values declined all fall, but bounced >back in the winter) so it's not a super-big worry. Protein-creatinine >ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in >the past, this is good. The horrible times of two years ago seem behind us. >I know they'll come back, but right now we're just not thinking too much >(well, not more than several times a day) about it. > >In closing, to new parents, kidney disease is NOT the end of the world. >We've been at this two years. Parts of our journey are nowwheres as >glowing as the current report (like the days when he was too anemic to make >it through a school day). You find out how much matters - and how much >doesn't. And in the end, (for us, anyway - knock wood), at two years - not >much has changed. > >Cy > >PS - this post was interupted by a phone call. " Mom - this is a good party. >I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in >an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up >at 10 " . > > > > > >To edit your settings for the group, go to our Yahoo Group >home page: >http://groups.yahoo.com/group/iga-nephropathy/ > >To unsubcribe via email, >iga-nephropathy-unsubscribe >Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: >http://www.igan.ca/id62.htm > >Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Cy, Great news on holding mostly stable. It is a bit concerning that the C3 has declined again, but we will rest on the good news for now. Give him a big hug and tell him how proud I am of his grades. Congratulations on being asked to join the board too! I am sure you will be a great asset for them. My youngest was very involved in children's theater and absolutely loved it as much as does now. She is even taking a few drama classes while she is at USC as electives because she still loves it so much. It is so great has an outlet where he can really express himself, excel and enjoy himself so much. You are so blessed to have such a great son! In a message dated 7/8/2004 11:36:12 PM Eastern Daylight Time, " Cy Webb " writes: >I've been meaning to check in for the longest time, but finally have a few >minutes to do so! 's got a performance/cast party, so I've got a bit >of time. For the new people, does not have IgAN, but MPGN, which is >a generally a far more aggressive disease than IgAN. It is very rare, so we >hang here with you guys! What follows, is a rather long post - which will >hopefully be helpful to the new parents. > >School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was >supposed to be a B+, but -the-negotiator managed to get the teacher to >upgrade it to an A- (where he gets those skills, I don't know - however >I've begun to take lessons from him. He tells me (and he's probably right) >that I escalate into nastyness too fast). ly, I don't give too many >hoots about grades. It's like once his kidney problems were diagnosed, he >turned into this straight A student... I'm sure there's a connection there. > >Right now he is spending 12 hours/day at the theater. The summer began with >a bang when at the veritable age of 13, they let him stage manage a >production of 1001 Dalmatians (I HATE DISNEY! However, that's another >story). This was the first time Disney granted rights to an amateur >theater. From there, he was cast as the Grand Duke in a production of >Cinderella (closes tomorrow) - in which he really helped carry the show. >He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) >and is auditioning for a tiny part in Macbeth later in the summer. Very >unexpectedly, I was invited to join the board of the theater. 's >been involved with this place for 5 years. Other than helping in the >costume shop periodically, I've been very much a drop-and-run parent so it >rather surprised me. I'm feeling plunged into the miasma of local city >politics - which is perversely fascinating. > >In the very few minutes that he's not at the theater, 's working on >learning some geography with an eye to participating in the National >Geographic Geography Bee next year. What is the capital of Lichtenstien? >Where is San Marino? What mountains run down the Italian peninsula? What >mountains are in northern Italy? He may not win (possibly too Eurocentric), >but we're having a blast with this. > >Kidney numbers are holding more or less stable. Got labs today. C3 (an >MPGN thing, not an IgAN thing) went down (this is the 3rd month of >decline), which is a little worrisome, but continues to be low-normal. We >went through this before when his C3 values declined all fall, but bounced >back in the winter) so it's not a super-big worry. Protein-creatinine >ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in >the past, this is good. The horrible times of two years ago seem behind us. >I know they'll come back, but right now we're just not thinking too much >(well, not more than several times a day) about it. > >In closing, to new parents, kidney disease is NOT the end of the world. >We've been at this two years. Parts of our journey are nowwheres as >glowing as the current report (like the days when he was too anemic to make >it through a school day). You find out how much matters - and how much >doesn't. And in the end, (for us, anyway - knock wood), at two years - not >much has changed. > >Cy > >PS - this post was interupted by a phone call. " Mom - this is a good party. >I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in >an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up >at 10 " . > > > > > >To edit your settings for the group, go to our Yahoo Group >home page: >http://groups.yahoo.com/group/iga-nephropathy/ > >To unsubcribe via email, >iga-nephropathy-unsubscribe >Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: >http://www.igan.ca/id62.htm > >Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Cy, Great news on holding mostly stable. It is a bit concerning that the C3 has declined again, but we will rest on the good news for now. Give him a big hug and tell him how proud I am of his grades. Congratulations on being asked to join the board too! I am sure you will be a great asset for them. My youngest was very involved in children's theater and absolutely loved it as much as does now. She is even taking a few drama classes while she is at USC as electives because she still loves it so much. It is so great has an outlet where he can really express himself, excel and enjoy himself so much. You are so blessed to have such a great son! In a message dated 7/8/2004 11:36:12 PM Eastern Daylight Time, " Cy Webb " writes: >I've been meaning to check in for the longest time, but finally have a few >minutes to do so! 's got a performance/cast party, so I've got a bit >of time. For the new people, does not have IgAN, but MPGN, which is >a generally a far more aggressive disease than IgAN. It is very rare, so we >hang here with you guys! What follows, is a rather long post - which will >hopefully be helpful to the new parents. > >School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was >supposed to be a B+, but -the-negotiator managed to get the teacher to >upgrade it to an A- (where he gets those skills, I don't know - however >I've begun to take lessons from him. He tells me (and he's probably right) >that I escalate into nastyness too fast). ly, I don't give too many >hoots about grades. It's like once his kidney problems were diagnosed, he >turned into this straight A student... I'm sure there's a connection there. > >Right now he is spending 12 hours/day at the theater. The summer began with >a bang when at the veritable age of 13, they let him stage manage a >production of 1001 Dalmatians (I HATE DISNEY! However, that's another >story). This was the first time Disney granted rights to an amateur >theater. From there, he was cast as the Grand Duke in a production of >Cinderella (closes tomorrow) - in which he really helped carry the show. >He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) >and is auditioning for a tiny part in Macbeth later in the summer. Very >unexpectedly, I was invited to join the board of the theater. 's >been involved with this place for 5 years. Other than helping in the >costume shop periodically, I've been very much a drop-and-run parent so it >rather surprised me. I'm feeling plunged into the miasma of local city >politics - which is perversely fascinating. > >In the very few minutes that he's not at the theater, 's working on >learning some geography with an eye to participating in the National >Geographic Geography Bee next year. What is the capital of Lichtenstien? >Where is San Marino? What mountains run down the Italian peninsula? What >mountains are in northern Italy? He may not win (possibly too Eurocentric), >but we're having a blast with this. > >Kidney numbers are holding more or less stable. Got labs today. C3 (an >MPGN thing, not an IgAN thing) went down (this is the 3rd month of >decline), which is a little worrisome, but continues to be low-normal. We >went through this before when his C3 values declined all fall, but bounced >back in the winter) so it's not a super-big worry. Protein-creatinine >ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in >the past, this is good. The horrible times of two years ago seem behind us. >I know they'll come back, but right now we're just not thinking too much >(well, not more than several times a day) about it. > >In closing, to new parents, kidney disease is NOT the end of the world. >We've been at this two years. Parts of our journey are nowwheres as >glowing as the current report (like the days when he was too anemic to make >it through a school day). You find out how much matters - and how much >doesn't. And in the end, (for us, anyway - knock wood), at two years - not >much has changed. > >Cy > >PS - this post was interupted by a phone call. " Mom - this is a good party. >I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in >an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up >at 10 " . > > > > > >To edit your settings for the group, go to our Yahoo Group >home page: >http://groups.yahoo.com/group/iga-nephropathy/ > >To unsubcribe via email, >iga-nephropathy-unsubscribe >Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: >http://www.igan.ca/id62.htm > >Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Cy: You should be (and I'm sure you are) very proud of that young man. Cy Webb wrote: I've been meaning to check in for the longest time, but finally have a few minutes to do so! 's got a performance/cast party, so I've got a bit of time. For the new people, does not have IgAN, but MPGN, which is a generally a far more aggressive disease than IgAN. It is very rare, so we hang here with you guys! What follows, is a rather long post - which will hopefully be helpful to the new parents. School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was supposed to be a B+, but -the-negotiator managed to get the teacher to upgrade it to an A- (where he gets those skills, I don't know - however I've begun to take lessons from him. He tells me (and he's probably right) that I escalate into nastyness too fast). ly, I don't give too many hoots about grades. It's like once his kidney problems were diagnosed, he turned into this straight A student... I'm sure there's a connection there. Right now he is spending 12 hours/day at the theater. The summer began with a bang when at the veritable age of 13, they let him stage manage a production of 1001 Dalmatians (I HATE DISNEY! However, that's another story). This was the first time Disney granted rights to an amateur theater. From there, he was cast as the Grand Duke in a production of Cinderella (closes tomorrow) - in which he really helped carry the show. He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) and is auditioning for a tiny part in Macbeth later in the summer. Very unexpectedly, I was invited to join the board of the theater. 's been involved with this place for 5 years. Other than helping in the costume shop periodically, I've been very much a drop-and-run parent so it rather surprised me. I'm feeling plunged into the miasma of local city politics - which is perversely fascinating. In the very few minutes that he's not at the theater, 's working on learning some geography with an eye to participating in the National Geographic Geography Bee next year. What is the capital of Lichtenstien? Where is San Marino? What mountains run down the Italian peninsula? What mountains are in northern Italy? He may not win (possibly too Eurocentric), but we're having a blast with this. Kidney numbers are holding more or less stable. Got labs today. C3 (an MPGN thing, not an IgAN thing) went down (this is the 3rd month of decline), which is a little worrisome, but continues to be low-normal. We went through this before when his C3 values declined all fall, but bounced back in the winter) so it's not a super-big worry. Protein-creatinine ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in the past, this is good. The horrible times of two years ago seem behind us. I know they'll come back, but right now we're just not thinking too much (well, not more than several times a day) about it. In closing, to new parents, kidney disease is NOT the end of the world. We've been at this two years. Parts of our journey are nowwheres as glowing as the current report (like the days when he was too anemic to make it through a school day). You find out how much matters - and how much doesn't. And in the end, (for us, anyway - knock wood), at two years - not much has changed. Cy PS - this post was interupted by a phone call. " Mom - this is a good party. I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up at 10 " . To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Cy: You should be (and I'm sure you are) very proud of that young man. Cy Webb wrote: I've been meaning to check in for the longest time, but finally have a few minutes to do so! 's got a performance/cast party, so I've got a bit of time. For the new people, does not have IgAN, but MPGN, which is a generally a far more aggressive disease than IgAN. It is very rare, so we hang here with you guys! What follows, is a rather long post - which will hopefully be helpful to the new parents. School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was supposed to be a B+, but -the-negotiator managed to get the teacher to upgrade it to an A- (where he gets those skills, I don't know - however I've begun to take lessons from him. He tells me (and he's probably right) that I escalate into nastyness too fast). ly, I don't give too many hoots about grades. It's like once his kidney problems were diagnosed, he turned into this straight A student... I'm sure there's a connection there. Right now he is spending 12 hours/day at the theater. The summer began with a bang when at the veritable age of 13, they let him stage manage a production of 1001 Dalmatians (I HATE DISNEY! However, that's another story). This was the first time Disney granted rights to an amateur theater. From there, he was cast as the Grand Duke in a production of Cinderella (closes tomorrow) - in which he really helped carry the show. He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) and is auditioning for a tiny part in Macbeth later in the summer. Very unexpectedly, I was invited to join the board of the theater. 's been involved with this place for 5 years. Other than helping in the costume shop periodically, I've been very much a drop-and-run parent so it rather surprised me. I'm feeling plunged into the miasma of local city politics - which is perversely fascinating. In the very few minutes that he's not at the theater, 's working on learning some geography with an eye to participating in the National Geographic Geography Bee next year. What is the capital of Lichtenstien? Where is San Marino? What mountains run down the Italian peninsula? What mountains are in northern Italy? He may not win (possibly too Eurocentric), but we're having a blast with this. Kidney numbers are holding more or less stable. Got labs today. C3 (an MPGN thing, not an IgAN thing) went down (this is the 3rd month of decline), which is a little worrisome, but continues to be low-normal. We went through this before when his C3 values declined all fall, but bounced back in the winter) so it's not a super-big worry. Protein-creatinine ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in the past, this is good. The horrible times of two years ago seem behind us. I know they'll come back, but right now we're just not thinking too much (well, not more than several times a day) about it. In closing, to new parents, kidney disease is NOT the end of the world. We've been at this two years. Parts of our journey are nowwheres as glowing as the current report (like the days when he was too anemic to make it through a school day). You find out how much matters - and how much doesn't. And in the end, (for us, anyway - knock wood), at two years - not much has changed. Cy PS - this post was interupted by a phone call. " Mom - this is a good party. I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up at 10 " . To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Cy that boy of yours wants to make it into college with a scholarship ay? Sorry to hear about the C3 numbers...I hope they do their same little dance like last year and come back to better normal ranges again. keep up the great work and don't knock those negotiating skills those will get you further in life than anything you will learn in class. ) Congratulations on the theater group stuff too. I think it's great that you have come away with so many parts and working as stage manager too, that is truly awesome! Keep on keepin' on. Amy update/some renal, some not/warning - LONG > I've been meaning to check in for the longest time, but finally have a few > minutes to do so! 's got a performance/cast party, so I've got a bit > of time. For the new people, does not have IgAN, but MPGN, which is > a generally a far more aggressive disease than IgAN. It is very rare, so we > hang here with you guys! What follows, is a rather long post - which will > hopefully be helpful to the new parents. > > School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was > supposed to be a B+, but -the-negotiator managed to get the teacher to > upgrade it to an A- (where he gets those skills, I don't know - however > I've begun to take lessons from him. He tells me (and he's probably right) > that I escalate into nastyness too fast). ly, I don't give too many > hoots about grades. It's like once his kidney problems were diagnosed, he > turned into this straight A student... I'm sure there's a connection there. > > Right now he is spending 12 hours/day at the theater. The summer began with > a bang when at the veritable age of 13, they let him stage manage a > production of 1001 Dalmatians (I HATE DISNEY! However, that's another > story). This was the first time Disney granted rights to an amateur > theater. From there, he was cast as the Grand Duke in a production of > Cinderella (closes tomorrow) - in which he really helped carry the show. > He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) > and is auditioning for a tiny part in Macbeth later in the summer. Very > unexpectedly, I was invited to join the board of the theater. 's > been involved with this place for 5 years. Other than helping in the > costume shop periodically, I've been very much a drop-and-run parent so it > rather surprised me. I'm feeling plunged into the miasma of local city > politics - which is perversely fascinating. > > In the very few minutes that he's not at the theater, 's working on > learning some geography with an eye to participating in the National > Geographic Geography Bee next year. What is the capital of Lichtenstien? > Where is San Marino? What mountains run down the Italian peninsula? What > mountains are in northern Italy? He may not win (possibly too Eurocentric), > but we're having a blast with this. > > Kidney numbers are holding more or less stable. Got labs today. C3 (an > MPGN thing, not an IgAN thing) went down (this is the 3rd month of > decline), which is a little worrisome, but continues to be low-normal. We > went through this before when his C3 values declined all fall, but bounced > back in the winter) so it's not a super-big worry. Protein-creatinine > ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in > the past, this is good. The horrible times of two years ago seem behind us. > I know they'll come back, but right now we're just not thinking too much > (well, not more than several times a day) about it. > > In closing, to new parents, kidney disease is NOT the end of the world. > We've been at this two years. Parts of our journey are nowwheres as > glowing as the current report (like the days when he was too anemic to make > it through a school day). You find out how much matters - and how much > doesn't. And in the end, (for us, anyway - knock wood), at two years - not > much has changed. > > Cy > > PS - this post was interupted by a phone call. " Mom - this is a good party. > I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in > an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up > at 10 " . > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Cy that boy of yours wants to make it into college with a scholarship ay? Sorry to hear about the C3 numbers...I hope they do their same little dance like last year and come back to better normal ranges again. keep up the great work and don't knock those negotiating skills those will get you further in life than anything you will learn in class. ) Congratulations on the theater group stuff too. I think it's great that you have come away with so many parts and working as stage manager too, that is truly awesome! Keep on keepin' on. Amy update/some renal, some not/warning - LONG > I've been meaning to check in for the longest time, but finally have a few > minutes to do so! 's got a performance/cast party, so I've got a bit > of time. For the new people, does not have IgAN, but MPGN, which is > a generally a far more aggressive disease than IgAN. It is very rare, so we > hang here with you guys! What follows, is a rather long post - which will > hopefully be helpful to the new parents. > > School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was > supposed to be a B+, but -the-negotiator managed to get the teacher to > upgrade it to an A- (where he gets those skills, I don't know - however > I've begun to take lessons from him. He tells me (and he's probably right) > that I escalate into nastyness too fast). ly, I don't give too many > hoots about grades. It's like once his kidney problems were diagnosed, he > turned into this straight A student... I'm sure there's a connection there. > > Right now he is spending 12 hours/day at the theater. The summer began with > a bang when at the veritable age of 13, they let him stage manage a > production of 1001 Dalmatians (I HATE DISNEY! However, that's another > story). This was the first time Disney granted rights to an amateur > theater. From there, he was cast as the Grand Duke in a production of > Cinderella (closes tomorrow) - in which he really helped carry the show. > He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) > and is auditioning for a tiny part in Macbeth later in the summer. Very > unexpectedly, I was invited to join the board of the theater. 's > been involved with this place for 5 years. Other than helping in the > costume shop periodically, I've been very much a drop-and-run parent so it > rather surprised me. I'm feeling plunged into the miasma of local city > politics - which is perversely fascinating. > > In the very few minutes that he's not at the theater, 's working on > learning some geography with an eye to participating in the National > Geographic Geography Bee next year. What is the capital of Lichtenstien? > Where is San Marino? What mountains run down the Italian peninsula? What > mountains are in northern Italy? He may not win (possibly too Eurocentric), > but we're having a blast with this. > > Kidney numbers are holding more or less stable. Got labs today. C3 (an > MPGN thing, not an IgAN thing) went down (this is the 3rd month of > decline), which is a little worrisome, but continues to be low-normal. We > went through this before when his C3 values declined all fall, but bounced > back in the winter) so it's not a super-big worry. Protein-creatinine > ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in > the past, this is good. The horrible times of two years ago seem behind us. > I know they'll come back, but right now we're just not thinking too much > (well, not more than several times a day) about it. > > In closing, to new parents, kidney disease is NOT the end of the world. > We've been at this two years. Parts of our journey are nowwheres as > glowing as the current report (like the days when he was too anemic to make > it through a school day). You find out how much matters - and how much > doesn't. And in the end, (for us, anyway - knock wood), at two years - not > much has changed. > > Cy > > PS - this post was interupted by a phone call. " Mom - this is a good party. > I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in > an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up > at 10 " . > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 Cy that boy of yours wants to make it into college with a scholarship ay? Sorry to hear about the C3 numbers...I hope they do their same little dance like last year and come back to better normal ranges again. keep up the great work and don't knock those negotiating skills those will get you further in life than anything you will learn in class. ) Congratulations on the theater group stuff too. I think it's great that you have come away with so many parts and working as stage manager too, that is truly awesome! Keep on keepin' on. Amy update/some renal, some not/warning - LONG > I've been meaning to check in for the longest time, but finally have a few > minutes to do so! 's got a performance/cast party, so I've got a bit > of time. For the new people, does not have IgAN, but MPGN, which is > a generally a far more aggressive disease than IgAN. It is very rare, so we > hang here with you guys! What follows, is a rather long post - which will > hopefully be helpful to the new parents. > > School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was > supposed to be a B+, but -the-negotiator managed to get the teacher to > upgrade it to an A- (where he gets those skills, I don't know - however > I've begun to take lessons from him. He tells me (and he's probably right) > that I escalate into nastyness too fast). ly, I don't give too many > hoots about grades. It's like once his kidney problems were diagnosed, he > turned into this straight A student... I'm sure there's a connection there. > > Right now he is spending 12 hours/day at the theater. The summer began with > a bang when at the veritable age of 13, they let him stage manage a > production of 1001 Dalmatians (I HATE DISNEY! However, that's another > story). This was the first time Disney granted rights to an amateur > theater. From there, he was cast as the Grand Duke in a production of > Cinderella (closes tomorrow) - in which he really helped carry the show. > He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) > and is auditioning for a tiny part in Macbeth later in the summer. Very > unexpectedly, I was invited to join the board of the theater. 's > been involved with this place for 5 years. Other than helping in the > costume shop periodically, I've been very much a drop-and-run parent so it > rather surprised me. I'm feeling plunged into the miasma of local city > politics - which is perversely fascinating. > > In the very few minutes that he's not at the theater, 's working on > learning some geography with an eye to participating in the National > Geographic Geography Bee next year. What is the capital of Lichtenstien? > Where is San Marino? What mountains run down the Italian peninsula? What > mountains are in northern Italy? He may not win (possibly too Eurocentric), > but we're having a blast with this. > > Kidney numbers are holding more or less stable. Got labs today. C3 (an > MPGN thing, not an IgAN thing) went down (this is the 3rd month of > decline), which is a little worrisome, but continues to be low-normal. We > went through this before when his C3 values declined all fall, but bounced > back in the winter) so it's not a super-big worry. Protein-creatinine > ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in > the past, this is good. The horrible times of two years ago seem behind us. > I know they'll come back, but right now we're just not thinking too much > (well, not more than several times a day) about it. > > In closing, to new parents, kidney disease is NOT the end of the world. > We've been at this two years. Parts of our journey are nowwheres as > glowing as the current report (like the days when he was too anemic to make > it through a school day). You find out how much matters - and how much > doesn't. And in the end, (for us, anyway - knock wood), at two years - not > much has changed. > > Cy > > PS - this post was interupted by a phone call. " Mom - this is a good party. > I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in > an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up > at 10 " . > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 --- Hi Cy:) what a sweet letter.....I am so happy for you both... and you. Your letter made my day!..or late evening to be more acurate:) Love, Elwira In iga-nephropathy , " Cy Webb " <cyashleywebb@s...> wrote: > I've been meaning to check in for the longest time, but finally have a few > minutes to do so! 's got a performance/cast party, so I've got a bit > of time. For the new people, does not have IgAN, but MPGN, which is > a generally a far more aggressive disease than IgAN. It is very rare, so we > hang here with you guys! What follows, is a rather long post - which will > hopefully be helpful to the new parents. > > School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was > supposed to be a B+, but -the-negotiator managed to get the teacher to > upgrade it to an A- (where he gets those skills, I don't know - however > I've begun to take lessons from him. He tells me (and he's probably right) > that I escalate into nastyness too fast). ly, I don't give too many > hoots about grades. It's like once his kidney problems were diagnosed, he > turned into this straight A student... I'm sure there's a connection there. > > Right now he is spending 12 hours/day at the theater. The summer began with > a bang when at the veritable age of 13, they let him stage manage a > production of 1001 Dalmatians (I HATE DISNEY! However, that's another > story). This was the first time Disney granted rights to an amateur > theater. From there, he was cast as the Grand Duke in a production of > Cinderella (closes tomorrow) - in which he really helped carry the show. > He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) > and is auditioning for a tiny part in Macbeth later in the summer. Very > unexpectedly, I was invited to join the board of the theater. 's > been involved with this place for 5 years. Other than helping in the > costume shop periodically, I've been very much a drop-and-run parent so it > rather surprised me. I'm feeling plunged into the miasma of local city > politics - which is perversely fascinating. > > In the very few minutes that he's not at the theater, 's working on > learning some geography with an eye to participating in the National > Geographic Geography Bee next year. What is the capital of Lichtenstien? > Where is San Marino? What mountains run down the Italian peninsula? What > mountains are in northern Italy? He may not win (possibly too Eurocentric), > but we're having a blast with this. > > Kidney numbers are holding more or less stable. Got labs today. C3 (an > MPGN thing, not an IgAN thing) went down (this is the 3rd month of > decline), which is a little worrisome, but continues to be low- normal. We > went through this before when his C3 values declined all fall, but bounced > back in the winter) so it's not a super-big worry. Protein- creatinine > ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in > the past, this is good. The horrible times of two years ago seem behind us. > I know they'll come back, but right now we're just not thinking too much > (well, not more than several times a day) about it. > > In closing, to new parents, kidney disease is NOT the end of the world. > We've been at this two years. Parts of our journey are nowwheres as > glowing as the current report (like the days when he was too anemic to make > it through a school day). You find out how much matters - and how much > doesn't. And in the end, (for us, anyway - knock wood), at two years - not > much has changed. > > Cy > > PS - this post was interupted by a phone call. " Mom - this is a good party. > I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in > an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up > at 10 " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 --- Hi Cy:) what a sweet letter.....I am so happy for you both... and you. Your letter made my day!..or late evening to be more acurate:) Love, Elwira In iga-nephropathy , " Cy Webb " <cyashleywebb@s...> wrote: > I've been meaning to check in for the longest time, but finally have a few > minutes to do so! 's got a performance/cast party, so I've got a bit > of time. For the new people, does not have IgAN, but MPGN, which is > a generally a far more aggressive disease than IgAN. It is very rare, so we > hang here with you guys! What follows, is a rather long post - which will > hopefully be helpful to the new parents. > > School year ended with a bang with two A+s, 4 A's and 1 A-. One of them was > supposed to be a B+, but -the-negotiator managed to get the teacher to > upgrade it to an A- (where he gets those skills, I don't know - however > I've begun to take lessons from him. He tells me (and he's probably right) > that I escalate into nastyness too fast). ly, I don't give too many > hoots about grades. It's like once his kidney problems were diagnosed, he > turned into this straight A student... I'm sure there's a connection there. > > Right now he is spending 12 hours/day at the theater. The summer began with > a bang when at the veritable age of 13, they let him stage manage a > production of 1001 Dalmatians (I HATE DISNEY! However, that's another > story). This was the first time Disney granted rights to an amateur > theater. From there, he was cast as the Grand Duke in a production of > Cinderella (closes tomorrow) - in which he really helped carry the show. > He's currently in rehearsal as Razool (sp?) in Aladdin - (opens next week) > and is auditioning for a tiny part in Macbeth later in the summer. Very > unexpectedly, I was invited to join the board of the theater. 's > been involved with this place for 5 years. Other than helping in the > costume shop periodically, I've been very much a drop-and-run parent so it > rather surprised me. I'm feeling plunged into the miasma of local city > politics - which is perversely fascinating. > > In the very few minutes that he's not at the theater, 's working on > learning some geography with an eye to participating in the National > Geographic Geography Bee next year. What is the capital of Lichtenstien? > Where is San Marino? What mountains run down the Italian peninsula? What > mountains are in northern Italy? He may not win (possibly too Eurocentric), > but we're having a blast with this. > > Kidney numbers are holding more or less stable. Got labs today. C3 (an > MPGN thing, not an IgAN thing) went down (this is the 3rd month of > decline), which is a little worrisome, but continues to be low- normal. We > went through this before when his C3 values declined all fall, but bounced > back in the winter) so it's not a super-big worry. Protein- creatinine > ratio is 0.2 (normal is <0.1 for kids). Having been between 5.0 and 6.0 in > the past, this is good. The horrible times of two years ago seem behind us. > I know they'll come back, but right now we're just not thinking too much > (well, not more than several times a day) about it. > > In closing, to new parents, kidney disease is NOT the end of the world. > We've been at this two years. Parts of our journey are nowwheres as > glowing as the current report (like the days when he was too anemic to make > it through a school day). You find out how much matters - and how much > doesn't. And in the end, (for us, anyway - knock wood), at two years - not > much has changed. > > Cy > > PS - this post was interupted by a phone call. " Mom - this is a good party. > I want to stay. " " Did you take your meds? " " Yeah, mom - you were stuck in > an extra fish oil by mistake " . " Cool - have a good time, I'll pick you up > at 10 " . Quote Link to comment Share on other sites More sharing options...
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