Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Well, Hello Bonnie, Ok, I have some information that I hope will prove beneficial. I met with our consulting psychiarist--Dr. n, who works out of/with Child Psychiatry Service through Harvard Medical School, Mass. General Hosp. and McLean Hosp. (in patient care hospital);phone number , page . He said that given Pat's age, she might be able to be hooked up with someone through Children's Hosp, who of course you may know, have the Boston Center for Deaf and Hard of Hearing Children unit as well as a good Coordinated Care unit for kids with special needs and a good psychiatry dept. Also, Franciscan Children's Hospital who could provide similar service. Both are over here in Boston. He strongly suggested a group called Advocates in Framingham. It is a health center for adults with dev. disabilities. Gordon is the Medical Director and is an adult psychiatrist and " all around good guy " according to n. He said that they do alot of good work around hooking people up with services, housing, etc. Sounds to me like a good start. Dr. n also said that he could do " shotgun consulting " to if he needed it, so you can use his name. He said if you call, ask for use Dr. n's name and see if you/Pat can get an appt. with him. He also said that Pat should get hooked up with Mass Health ASAP. Has anyone talked to you about that? Also, keep on Mass Commission--remind them that Pat is sitting home and available anytime to meet with them (this is me talking, not Dr. n). Let me know how all of this goes. It is a great time sink in terms of getting these connections made, but hopefully will work well and quickly. In the meantime, how is your job? I understand about the travel--that is an amazing amount of time to be going back and forth to work!! Nothing closer to home? How is doing with this transition? You guys have done a lot in a short amount of time--WOW. I loved seeing a the other day. IT was fun to hear how her day went and that she enjoyed herself. Did she or Patty tell you that we all talked to one another during the day? Patty callled K.'s cell phone and we chatted for a few minutes. Fun. K or I did not tell Patty who was on the phone, so when I spoke, I said, " Why are you bothering K. here? " and Patty knew immediately it was me and started laughing. It was fun. Anyway, I must get to work. Take good care and let me know where things are and how I might be able to help. Bonnie, thank you, too, for your lovely words. It warms my heart that you say these things--and mean them. I truly appreciate it. Perhaps, more imporantly, I appreciate who you are and what you do everyday to keep things going for your family, especially Patty, and what that means to other CHARGE parents when you share the stories. YOU are the gift. with great affection, pam ps. tell that girl of yours to email me!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Bonnie, I thought I sent this to your home, sorry. pam > ---------- > From: Pam > Reply To: CHARGE > Sent: Friday, March 19, 2004 10:06 AM > To: CHARGE > Subject: RE: Thanks Pam > > Well, Hello Bonnie, > Ok, I have some information that I hope will prove beneficial. I met with our consulting psychiarist--Dr. n, who works out of/with Child Psychiatry Service through Harvard Medical School, Mass. General Hosp. and McLean Hosp. (in patient care hospital);phone number , page . > > He said that given Pat's age, she might be able to be hooked up with someone through Children's Hosp, who of course you may know, have the Boston Center for Deaf and Hard of Hearing Children unit as well as a good Coordinated Care unit for kids with special needs and a good psychiatry dept. Also, Franciscan Children's Hospital who could provide similar service. Both are over here in Boston. He strongly suggested a group called Advocates in Framingham. It is a health center for adults with dev. disabilities. Gordon is the Medical Director and is an adult psychiatrist and " all around good guy " according to n. He said that they do alot of good work around hooking people up with services, housing, etc. Sounds to me like a good start. Dr. n also said that he could do " shotgun consulting " to if he needed it, so you can use his name. He said if you call, ask for use Dr. n's name and see if you/Pat can get an appt. with him. > > He also said that Pat should get hooked up with Mass Health ASAP. Has anyone talked to you about that? Also, keep on Mass Commission--remind them that Pat is sitting home and available anytime to meet with them (this is me talking, not Dr. n). > > Let me know how all of this goes. It is a great time sink in terms of getting these connections made, but hopefully will work well and quickly. > > In the meantime, how is your job? I understand about the travel--that is an amazing amount of time to be going back and forth to work!! Nothing closer to home? How is doing with this transition? You guys have done a lot in a short amount of time--WOW. > > I loved seeing a the other day. IT was fun to hear how her day went and that she enjoyed herself. Did she or Patty tell you that we all talked to one another during the day? Patty callled K.'s cell phone and we chatted for a few minutes. Fun. K or I did not tell Patty who was on the phone, so when I spoke, I said, " Why are you bothering K. here? " and Patty knew immediately it was me and started laughing. It was fun. > > Anyway, I must get to work. Take good care and let me know where things are and how I might be able to help. > > Bonnie, thank you, too, for your lovely words. It warms my heart that you say these things--and mean them. I truly appreciate it. Perhaps, more imporantly, I appreciate who you are and what you do everyday to keep things going for your family, especially Patty, and what that means to other CHARGE parents when you share the stories. YOU are the gift. > > with great affection, > pam > > ps. tell that girl of yours to email me!! > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Bonnie, I thought I sent this to your home, sorry. pam > ---------- > From: Pam > Reply To: CHARGE > Sent: Friday, March 19, 2004 10:06 AM > To: CHARGE > Subject: RE: Thanks Pam > > Well, Hello Bonnie, > Ok, I have some information that I hope will prove beneficial. I met with our consulting psychiarist--Dr. n, who works out of/with Child Psychiatry Service through Harvard Medical School, Mass. General Hosp. and McLean Hosp. (in patient care hospital);phone number , page . > > He said that given Pat's age, she might be able to be hooked up with someone through Children's Hosp, who of course you may know, have the Boston Center for Deaf and Hard of Hearing Children unit as well as a good Coordinated Care unit for kids with special needs and a good psychiatry dept. Also, Franciscan Children's Hospital who could provide similar service. Both are over here in Boston. He strongly suggested a group called Advocates in Framingham. It is a health center for adults with dev. disabilities. Gordon is the Medical Director and is an adult psychiatrist and " all around good guy " according to n. He said that they do alot of good work around hooking people up with services, housing, etc. Sounds to me like a good start. Dr. n also said that he could do " shotgun consulting " to if he needed it, so you can use his name. He said if you call, ask for use Dr. n's name and see if you/Pat can get an appt. with him. > > He also said that Pat should get hooked up with Mass Health ASAP. Has anyone talked to you about that? Also, keep on Mass Commission--remind them that Pat is sitting home and available anytime to meet with them (this is me talking, not Dr. n). > > Let me know how all of this goes. It is a great time sink in terms of getting these connections made, but hopefully will work well and quickly. > > In the meantime, how is your job? I understand about the travel--that is an amazing amount of time to be going back and forth to work!! Nothing closer to home? How is doing with this transition? You guys have done a lot in a short amount of time--WOW. > > I loved seeing a the other day. IT was fun to hear how her day went and that she enjoyed herself. Did she or Patty tell you that we all talked to one another during the day? Patty callled K.'s cell phone and we chatted for a few minutes. Fun. K or I did not tell Patty who was on the phone, so when I spoke, I said, " Why are you bothering K. here? " and Patty knew immediately it was me and started laughing. It was fun. > > Anyway, I must get to work. Take good care and let me know where things are and how I might be able to help. > > Bonnie, thank you, too, for your lovely words. It warms my heart that you say these things--and mean them. I truly appreciate it. Perhaps, more imporantly, I appreciate who you are and what you do everyday to keep things going for your family, especially Patty, and what that means to other CHARGE parents when you share the stories. YOU are the gift. > > with great affection, > pam > > ps. tell that girl of yours to email me!! > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 I repeat Pam's recs about n. I strongly suggest following his lead. He's readily available by phone and has been most helpful with . Martha Quote Link to comment Share on other sites More sharing options...
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