Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi Bonnie, Happy Mother's Day to you as well. Thanks so much for your response. I would love to get together this week. I'm in the NICU every day at Children's. Let me know when and where you'd like to meet. Look forward to meeting you! > > Krystin, > > Welcome to the list. Most of all happy Mother's Day and congratulations on > being blessed by Felix. I have a daughter who has CHARGE that is 21 years > old. She has the Coloboma, coanal-atresia, submucus cleft, PDA, kidney, > hearing impairment, reflux, and almost all the other stuff that goes with CHARGE. > Although she has almost everything we are lucky in that she only has part of > each. She is now classified as mild. When she was born we were told some > pretty horrific news such as she'd never walk or talk. She's overcome many > obstacles. There are some things we have just had to accept and others we've > had to fight through. CHARGE is a lifelong disability but one that shows the > wonderful blessings life has to offer. She continues to do what many say she > can't or won't. She just seems to find her own way to do things. > > We lived in CT always and have moved to MA a couple of years ago for a > better life for her as an adult. As a matter of fact we'll be at Boston > Children's this Thursday and Friday. If you would like any visitors just let me know. > It is so much better when you meet other people who understand. Patty > wasn't diagnosed with CHARGE till she was 14 so we spent all those years alone. > When she got diagnosed our world made so much more sense. We met other > families who at first were strangers but within moments I've felt a depth of > understanding and feelings that I've searched for in others and never found. > Through Patty I've made some really remarkable unique relationships I never would > have had otherwise. Hey, this list is one of those. There are people here > who I feel know my heart as others just can't understand. You'll see what I > mean soon enough. > > Have you looked at the CHARGE Foundation website? Do you have the manual > and the articles from the medical journal? There's so much information for > you. You can also get the new parent packet from the foundation. Call n > or Meg. They're just wonderful. > > Wishing you all the best and let me know if you'd like to meet. > > Once again, Happy Mother's Day. > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 , I won't know what time Patty is going in Thursday until we get the call on Wednesday. Hopefully it will be early but since she's older I doubt it. We could meet for coffee or something. Do you mind if I let you know Wednesday night? I am so looking forward to be meeting you. You do know being at Boston Children's is one of the best places you can get for medical care for Felix. It is hard to have him in the hospital but he's in good hands. See you soon. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 bonnie wat is patty going in for thougth shes a bit old for childrenx coz shes bout my age and i am i went to adults at eighteen hugs ellen > > , > > I won't know what time Patty is going in Thursday until we get the call on > Wednesday. Hopefully it will be early but since she's older I doubt > it. We > could meet for coffee or something. Do you mind if I let you know > Wednesday > night? I am so looking forward to be meeting you. > > You do know being at Boston Children's is one of the best places you can > get > for medical care for Felix. It is hard to have him in the hospital but > he's > in good hands. > > See you soon. > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 bonnie wat is patty going in for thougth shes a bit old for childrenx coz shes bout my age and i am i went to adults at eighteen hugs ellen > > , > > I won't know what time Patty is going in Thursday until we get the call on > Wednesday. Hopefully it will be early but since she's older I doubt > it. We > could meet for coffee or something. Do you mind if I let you know > Wednesday > night? I am so looking forward to be meeting you. > > You do know being at Boston Children's is one of the best places you can > get > for medical care for Felix. It is hard to have him in the hospital but > he's > in good hands. > > See you soon. > > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Macmaster in Hamilton is called a children's hospital but there are several clinics within the hospital that take in adults. I go to Mac a lot. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Macmaster in Hamilton is called a children's hospital but there are several clinics within the hospital that take in adults. I go to Mac a lot. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi Bonnie, Yes we are very grateful to live here. Its one of those things you take for granted until you really need it! Just shoot me an e-mail on Wednesday when you know and we can set up a time to meet. Talk to you soon and thanks again, Turk22082@... wrote: , I won't know what time Patty is going in Thursday until we get the call on Wednesday. Hopefully it will be early but since she's older I doubt it. We could meet for coffee or something. Do you mind if I let you know Wednesday night? I am so looking forward to be meeting you. You do know being at Boston Children's is one of the best places you can get for medical care for Felix. It is hard to have him in the hospital but he's in good hands. See you soon. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi Bonnie, Yes we are very grateful to live here. Its one of those things you take for granted until you really need it! Just shoot me an e-mail on Wednesday when you know and we can set up a time to meet. Talk to you soon and thanks again, Turk22082@... wrote: , I won't know what time Patty is going in Thursday until we get the call on Wednesday. Hopefully it will be early but since she's older I doubt it. We could meet for coffee or something. Do you mind if I let you know Wednesday night? I am so looking forward to be meeting you. You do know being at Boston Children's is one of the best places you can get for medical care for Felix. It is hard to have him in the hospital but he's in good hands. See you soon. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
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