Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hello everyone. Well, we have been away for a while and I am way behind on messages. As much as I would like to go back and read all of them, it is not going to be possible. Hopefully I can skim through and get a feel for what has been going on with everyone. I hope all of you have been doing well. A little update on . She just turned 4 last month and is doing really good. I actually looked at her the other day and for the first time since she was born, I just saw a typical little girl. We seem to have some of those moments now and then, but most of the time, there is something CHARGE related going on. We are traveling Thursday to get her BAHA softband loaner. They have been doing some testing and want to try it for a while. She keeps asking me when she gets her BAHA so I think she must have liked it when they tried one on her. She has had a few colds, and was in the hospital a couple of times since November, but otherwise healthy. She has started seeing endo because she has dropped off the curve on the growth chart. They have done some testing, but so far nothing has shown abnormal. We go back in a few months to see where we go from here. She is very sassy these days and thinks she is the boss of everyone. We still have many behavior issues and some days are really bad. Phil has a huge scratch on is face from one of our escapades. We are trying to get a handle on it, but it's been hard. We have had many changes lately and that has not helped. We moved out of our house and in with my mother-in-law. We were going to sell our house and live there for a while, but it just wasn't working. We moved back into our house and I went back to work. That has been difficult, but we have to make it work. My mother-in-law still has a hard time understanding everything with and I tend to get frustrated about it. I try not to, but it happens. She seems to think that we have no debt other than our house so why can't we afford it on just Phil's income. I have tried to explain the medical aspect to her, but she just doesn't get it. We just knew that living there was not going to work out. Now that I am working, I feel like I am not able to keep up on all the " stuff " . For example, we have and IEP meeting this week and I am not really prepared for it. I am hoping that as time goes on, it will all become easier. HaHa who am I kidding? Anyway, I am hoping to keep up on the list from now on since all of you are what keeps me sane. I hope everyone is good and it is good to be back. Lee Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple weeks --------------------------------- Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hi ! Glad to see you back! Sorry to hear about the bumps but happy to hear about the good times!!! Looking forward to hearing from you. Janay in IL Rasha's Mom-19 months old > > Hello everyone. Well, we have been away for a while and I am way behind on messages. As much as I would like to go back and read all of them, it is not going to be possible. Hopefully I can skim through and get a feel for what has been going on with everyone. I hope all of you have been doing well. > > A little update on . She just turned 4 last month and is doing really good. I actually looked at her the other day and for the first time since she was born, I just saw a typical little girl. We seem to have some of those moments now and then, but most of the time, there is something CHARGE related going on. We are traveling Thursday to get her BAHA softband loaner. They have been doing some testing and want to try it for a while. She keeps asking me when she gets her BAHA so I think she must have liked it when they tried one on her. She has had a few colds, and was in the hospital a couple of times since November, but otherwise healthy. She has started seeing endo because she has dropped off the curve on the growth chart. They have done some testing, but so far nothing has shown abnormal. We go back in a few months to see where we go from here. She is very sassy these days and thinks she is the boss of everyone. We still have many behavior issues and some days are > really bad. Phil has a huge scratch on is face from one of our escapades. We are trying to get a handle on it, but it's been hard. We have had many changes lately and that has not helped. > > We moved out of our house and in with my mother-in-law. We were going to sell our house and live there for a while, but it just wasn't working. We moved back into our house and I went back to work. That has been difficult, but we have to make it work. My mother-in-law still has a hard time understanding everything with and I tend to get frustrated about it. I try not to, but it happens. She seems to think that we have no debt other than our house so why can't we afford it on just Phil's income. I have tried to explain the medical aspect to her, but she just doesn't get it. We just knew that living there was not going to work out. Now that I am working, I feel like I am not able to keep up on all the " stuff " . For example, we have and IEP meeting this week and I am not really prepared for it. I am hoping that as time goes on, it will all become easier. HaHa who am I kidding? > > Anyway, I am hoping to keep up on the list from now on since all of you are what keeps me sane. I hope everyone is good and it is good to be back. > > Lee > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple weeks > > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Yahoo! Travel to find your fit. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hi ..great to hear from you are you coming to the conference in July? > > Hi ! > > Glad to see you back! Sorry to hear about the bumps but happy to > hear about the good times!!! Looking forward to hearing from you. > > Janay in IL > Rasha's Mom-19 months old > > > > > > > Hello everyone. Well, we have been away for a while and I am way > behind on messages. As much as I would like to go back and read all > of them, it is not going to be possible. Hopefully I can skim > through and get a feel for what has been going on with everyone. I > hope all of you have been doing well. > > > > A little update on . She just turned 4 last month and is > doing really good. I actually looked at her the other day and for > the first time since she was born, I just saw a typical little girl. > We seem to have some of those moments now and then, but most of the > time, there is something CHARGE related going on. We are traveling > Thursday to get her BAHA softband loaner. They have been doing some > testing and want to try it for a while. She keeps asking me when she > gets her BAHA so I think she must have liked it when they tried one > on her. She has had a few colds, and was in the hospital a couple of > times since November, but otherwise healthy. She has started seeing > endo because she has dropped off the curve on the growth chart. They > have done some testing, but so far nothing has shown abnormal. We go > back in a few months to see where we go from here. She is very sassy > these days and thinks she is the boss of everyone. We still have > many behavior issues and some days are > > really bad. Phil has a huge scratch on is face from one of our > escapades. We are trying to get a handle on it, but it's been hard. > We have had many changes lately and that has not helped. > > > > We moved out of our house and in with my mother-in-law. We were > going to sell our house and live there for a while, but it just > wasn't working. We moved back into our house and I went back to > work. That has been difficult, but we have to make it work. My > mother-in-law still has a hard time understanding everything with > and I tend to get frustrated about it. I try not to, but it > happens. She seems to think that we have no debt other than our > house so why can't we afford it on just Phil's income. I have tried > to explain the medical aspect to her, but she just doesn't get it. > We just knew that living there was not going to work out. Now that I > am working, I feel like I am not able to keep up on all the " > stuff " . For example, we have and IEP meeting this week and I am not > really prepared for it. I am hoping that as time goes on, it will > all become easier. HaHa who am I kidding? > > > > Anyway, I am hoping to keep up on the list from now on since all > of you are what keeps me sane. I hope everyone is good and it is > good to be back. > > > > Lee > > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in > a couple weeks > > > > > > > > --------------------------------- > > Now that's room service! Choose from over 150,000 hotels > > in 45,000 destinations on Yahoo! Travel to find your fit. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 wow uve had lots happening great to have u back love u heaps > > Hi ..great to hear from you are you coming to the conference in > July? > > On 3/18/07, jkhayes95 <jkhayes95@... <jkhayes95%40yahoo.com>> wrote: > > > > Hi ! > > > > Glad to see you back! Sorry to hear about the bumps but happy to > > hear about the good times!!! Looking forward to hearing from you. > > > > Janay in IL > > Rasha's Mom-19 months old > > > > > > > > > > > > Hello everyone. Well, we have been away for a while and I am way > > behind on messages. As much as I would like to go back and read all > > of them, it is not going to be possible. Hopefully I can skim > > through and get a feel for what has been going on with everyone. I > > hope all of you have been doing well. > > > > > > A little update on . She just turned 4 last month and is > > doing really good. I actually looked at her the other day and for > > the first time since she was born, I just saw a typical little girl. > > We seem to have some of those moments now and then, but most of the > > time, there is something CHARGE related going on. We are traveling > > Thursday to get her BAHA softband loaner. They have been doing some > > testing and want to try it for a while. She keeps asking me when she > > gets her BAHA so I think she must have liked it when they tried one > > on her. She has had a few colds, and was in the hospital a couple of > > times since November, but otherwise healthy. She has started seeing > > endo because she has dropped off the curve on the growth chart. They > > have done some testing, but so far nothing has shown abnormal. We go > > back in a few months to see where we go from here. She is very sassy > > these days and thinks she is the boss of everyone. We still have > > many behavior issues and some days are > > > really bad. Phil has a huge scratch on is face from one of our > > escapades. We are trying to get a handle on it, but it's been hard. > > We have had many changes lately and that has not helped. > > > > > > We moved out of our house and in with my mother-in-law. We were > > going to sell our house and live there for a while, but it just > > wasn't working. We moved back into our house and I went back to > > work. That has been difficult, but we have to make it work. My > > mother-in-law still has a hard time understanding everything with > > and I tend to get frustrated about it. I try not to, but it > > happens. She seems to think that we have no debt other than our > > house so why can't we afford it on just Phil's income. I have tried > > to explain the medical aspect to her, but she just doesn't get it. > > We just knew that living there was not going to work out. Now that I > > am working, I feel like I am not able to keep up on all the " > > stuff " . For example, we have and IEP meeting this week and I am not > > really prepared for it. I am hoping that as time goes on, it will > > all become easier. HaHa who am I kidding? > > > > > > Anyway, I am hoping to keep up on the list from now on since all > > of you are what keeps me sane. I hope everyone is good and it is > > good to be back. > > > > > > Lee > > > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in > > a couple weeks > > > > > > > > > > > > --------------------------------- > > > Now that's room service! Choose from over 150,000 hotels > > > in 45,000 destinations on Yahoo! Travel to find your fit. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 Hey , Four years old is when Kennedy got her BAHA and her behavioral issues. We started her on medication and implemented some behavioral techniques 'round about that time and things settled out, but the " behavior period " of K's life was the toughest thing so far as far as day-to-day living. I hope she LOVES the BAHA; it's been a real success for Kennedy - she wore it for a few years before getting the implant. Please do let us know how she makes out. > > Hello everyone. Well, we have been away for a while and I am way behind > on messages. As much as I would like to go back and read all of them, it is > not going to be possible. Hopefully I can skim through and get a feel for > what has been going on with everyone. I hope all of you have been doing > well. > > A little update on . She just turned 4 last month and is doing > really good. I actually looked at her the other day and for the first time > since she was born, I just saw a typical little girl. We seem to have some > of those moments now and then, but most of the time, there is something > CHARGE related going on. We are traveling Thursday to get her BAHA softband > loaner. They have been doing some testing and want to try it for a while. > She keeps asking me when she gets her BAHA so I think she must have liked it > when they tried one on her. She has had a few colds, and was in the hospital > a couple of times since November, but otherwise healthy. She has started > seeing endo because she has dropped off the curve on the growth chart. They > have done some testing, but so far nothing has shown abnormal. We go back in > a few months to see where we go from here. She is very sassy these days and > thinks she is the boss of everyone. We still have many behavior issues and > some days are > really bad. Phil has a huge scratch on is face from one of our escapades. > We are trying to get a handle on it, but it's been hard. We have had many > changes lately and that has not helped. > > We moved out of our house and in with my mother-in-law. We were going to > sell our house and live there for a while, but it just wasn't working. We > moved back into our house and I went back to work. That has been difficult, > but we have to make it work. My mother-in-law still has a hard time > understanding everything with and I tend to get frustrated about it. > I try not to, but it happens. She seems to think that we have no debt other > than our house so why can't we afford it on just Phil's income. I have tried > to explain the medical aspect to her, but she just doesn't get it. We just > knew that living there was not going to work out. Now that I am working, I > feel like I am not able to keep up on all the " stuff " . For example, > we have and IEP meeting this week and I am not really prepared for it. I am > hoping that as time goes on, it will all become easier. HaHa who am I > kidding? > > Anyway, I am hoping to keep up on the list from now on since all of you > are what keeps me sane. I hope everyone is good and it is good to be back. > > Lee > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple > weeks > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Yahoo! Travel to find your fit. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 , So nice to hear from you. I am sorry that things are rocky‹can¹t be easy!! And how did get to be 4????? Best to you and yours. pam > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 , Hello I am so glad to hear from you!!! I have been thinking about lately so its so funny that you would post. I know you live in Illinois where in Illinois again? I live in Lake County near Gurnee. We are selling our house and we moved in with my in laws so I know what you are going threw. My mother in law doesnt get anything and she doesnt understand why Eva needs therapy 4 times a week and why they need to come into her house, she just hides up in her room if she is home. MY little turns 4 in a couple of days. Eva will be 2 in a couple of weeks. I hope we can talk we seem to have a lot in common. I have no problem driving sometimes. Where are you getting the loaner hearing aid? We got one from SEADOL. I know we all need someone to talk to and when they have a lot of the same issues we can be support for eachother. Talk to you soon, Crystal mom to (11), (3, 4 in 3 days), Eva (23 month old CHARGEr) wife to Dan in Illinois www.babysites.com/sites/crystalm1476/ > > Hello everyone. Well, we have been away for a while and I am way behind on messages. As much as I would like to go back and read all of them, it is not going to be possible. Hopefully I can skim through and get a feel for what has been going on with everyone. I hope all of you have been doing well. > > A little update on . She just turned 4 last month and is doing really good. I actually looked at her the other day and for the first time since she was born, I just saw a typical little girl. We seem to have some of those moments now and then, but most of the time, there is something CHARGE related going on. We are traveling Thursday to get her BAHA softband loaner. They have been doing some testing and want to try it for a while. She keeps asking me when she gets her BAHA so I think she must have liked it when they tried one on her. She has had a few colds, and was in the hospital a couple of times since November, but otherwise healthy. She has started seeing endo because she has dropped off the curve on the growth chart. They have done some testing, but so far nothing has shown abnormal. We go back in a few months to see where we go from here. She is very sassy these days and thinks she is the boss of everyone. We still have many behavior issues and some days are > really bad. Phil has a huge scratch on is face from one of our escapades. We are trying to get a handle on it, but it's been hard. We have had many changes lately and that has not helped. > > We moved out of our house and in with my mother-in-law. We were going to sell our house and live there for a while, but it just wasn't working. We moved back into our house and I went back to work. That has been difficult, but we have to make it work. My mother-in-law still has a hard time understanding everything with and I tend to get frustrated about it. I try not to, but it happens. She seems to think that we have no debt other than our house so why can't we afford it on just Phil's income. I have tried to explain the medical aspect to her, but she just doesn't get it. We just knew that living there was not going to work out. Now that I am working, I feel like I am not able to keep up on all the " stuff " . For example, we have and IEP meeting this week and I am not really prepared for it. I am hoping that as time goes on, it will all become easier. HaHa who am I kidding? > > Anyway, I am hoping to keep up on the list from now on since all of you are what keeps me sane. I hope everyone is good and it is good to be back. > > Lee > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple weeks > > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Yahoo! Travel to find your fit. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 I wish I was, but it is really looking like we will not be able to make this one. I'm very sad about that, but there will be others. Are you going? _Belinda _ wrote: Hi ..great to hear from you are you coming to the conference in July? > > Hi ! > > Glad to see you back! Sorry to hear about the bumps but happy to > hear about the good times!!! Looking forward to hearing from you. > > Janay in IL > Rasha's Mom-19 months old > > > > > > > Hello everyone. Well, we have been away for a while and I am way > behind on messages. As much as I would like to go back and read all > of them, it is not going to be possible. Hopefully I can skim > through and get a feel for what has been going on with everyone. I > hope all of you have been doing well. > > > > A little update on . She just turned 4 last month and is > doing really good. I actually looked at her the other day and for > the first time since she was born, I just saw a typical little girl. > We seem to have some of those moments now and then, but most of the > time, there is something CHARGE related going on. We are traveling > Thursday to get her BAHA softband loaner. They have been doing some > testing and want to try it for a while. She keeps asking me when she > gets her BAHA so I think she must have liked it when they tried one > on her. She has had a few colds, and was in the hospital a couple of > times since November, but otherwise healthy. She has started seeing > endo because she has dropped off the curve on the growth chart. They > have done some testing, but so far nothing has shown abnormal. We go > back in a few months to see where we go from here. She is very sassy > these days and thinks she is the boss of everyone. We still have > many behavior issues and some days are > > really bad. Phil has a huge scratch on is face from one of our > escapades. We are trying to get a handle on it, but it's been hard. > We have had many changes lately and that has not helped. > > > > We moved out of our house and in with my mother-in-law. We were > going to sell our house and live there for a while, but it just > wasn't working. We moved back into our house and I went back to > work. That has been difficult, but we have to make it work. My > mother-in-law still has a hard time understanding everything with > and I tend to get frustrated about it. I try not to, but it > happens. She seems to think that we have no debt other than our > house so why can't we afford it on just Phil's income. I have tried > to explain the medical aspect to her, but she just doesn't get it. > We just knew that living there was not going to work out. Now that I > am working, I feel like I am not able to keep up on all the " > stuff " . For example, we have and IEP meeting this week and I am not > really prepared for it. I am hoping that as time goes on, it will > all become easier. HaHa who am I kidding? > > > > Anyway, I am hoping to keep up on the list from now on since all > of you are what keeps me sane. I hope everyone is good and it is > good to be back. > > > > Lee > > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in > a couple weeks > > > > > > > > --------------------------------- > > Now that's room service! Choose from over 150,000 hotels > > in 45,000 destinations on Yahoo! Travel to find your fit. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hey , If you don't mind, I may need to pick your brain regarding the behaviors and medications. We have been seeing a behavior specialist for several years. The first issues were self abusive behaviors, now it is the attacking of all of us. She does not do this at school, so I don't know why she does it at home. We have tried several things and nothing works. Phil is to the point that he thinks she needs medicated. I am really unsure what I think. Some days I think she needs meds and others I don't. I think my biggest fear is that we will medicate her and we will lose a part of her. She is funny and silly and loving most of the time and I don't want to destroy that. Does that make sense? What kind of issues did K have when she was put on meds and did it change her in any other way besides just the behaviors? We will keep you posted on the BAHA. Weir wrote: Hey , Four years old is when Kennedy got her BAHA and her behavioral issues. We started her on medication and implemented some behavioral techniques 'round about that time and things settled out, but the " behavior period " of K's life was the toughest thing so far as far as day-to-day living. I hope she LOVES the BAHA; it's been a real success for Kennedy - she wore it for a few years before getting the implant. Please do let us know how she makes out. > > Hello everyone. Well, we have been away for a while and I am way behind > on messages. As much as I would like to go back and read all of them, it is > not going to be possible. Hopefully I can skim through and get a feel for > what has been going on with everyone. I hope all of you have been doing > well. > > A little update on . She just turned 4 last month and is doing > really good. I actually looked at her the other day and for the first time > since she was born, I just saw a typical little girl. We seem to have some > of those moments now and then, but most of the time, there is something > CHARGE related going on. We are traveling Thursday to get her BAHA softband > loaner. They have been doing some testing and want to try it for a while. > She keeps asking me when she gets her BAHA so I think she must have liked it > when they tried one on her. She has had a few colds, and was in the hospital > a couple of times since November, but otherwise healthy. She has started > seeing endo because she has dropped off the curve on the growth chart. They > have done some testing, but so far nothing has shown abnormal. We go back in > a few months to see where we go from here. She is very sassy these days and > thinks she is the boss of everyone. We still have many behavior issues and > some days are > really bad. Phil has a huge scratch on is face from one of our escapades. > We are trying to get a handle on it, but it's been hard. We have had many > changes lately and that has not helped. > > We moved out of our house and in with my mother-in-law. We were going to > sell our house and live there for a while, but it just wasn't working. We > moved back into our house and I went back to work. That has been difficult, > but we have to make it work. My mother-in-law still has a hard time > understanding everything with and I tend to get frustrated about it. > I try not to, but it happens. She seems to think that we have no debt other > than our house so why can't we afford it on just Phil's income. I have tried > to explain the medical aspect to her, but she just doesn't get it. We just > knew that living there was not going to work out. Now that I am working, I > feel like I am not able to keep up on all the " stuff " . For example, > we have and IEP meeting this week and I am not really prepared for it. I am > hoping that as time goes on, it will all become easier. HaHa who am I > kidding? > > Anyway, I am hoping to keep up on the list from now on since all of you > are what keeps me sane. I hope everyone is good and it is good to be back. > > Lee > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple > weeks > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Yahoo! Travel to find your fit. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 I often wonder the same thing. I can't believe my baby is 4. Pamela wrote: , So nice to hear from you. I am sorry that things are rocky‹can¹t be easy!! And how did get to be 4????? Best to you and yours. pam > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi Crystal. We live in Peoria and yes we do have a lot in common. Maybe we can set something up for this spring to get together. I can also travel. Right now is really busy for me. I work for an accounting firm in the tax department and it is tax season. After April 17th life should get easier. Right now I work over most nights and work every Saturday. We are getting the BAHA from Carle clinic in Urbana. We will be trying it for a few weeks and then if we see improvements and she likes it, we will be purchasing one. 's audiologist said that they have had really good luck with getting insurance to pay for the BAHA because it is a hearing device not a hearing aid. We will see. Let me know if you ever want to talk. Mom to 4yrs CHARGE, Marissa 6yrs and Dalani 11yrs in a couple weeks supermama95 wrote: , Hello I am so glad to hear from you!!! I have been thinking about lately so its so funny that you would post. I know you live in Illinois where in Illinois again? I live in Lake County near Gurnee. We are selling our house and we moved in with my in laws so I know what you are going threw. My mother in law doesnt get anything and she doesnt understand why Eva needs therapy 4 times a week and why they need to come into her house, she just hides up in her room if she is home. MY little turns 4 in a couple of days. Eva will be 2 in a couple of weeks. I hope we can talk we seem to have a lot in common. I have no problem driving sometimes. Where are you getting the loaner hearing aid? We got one from SEADOL. I know we all need someone to talk to and when they have a lot of the same issues we can be support for eachother. Talk to you soon, Crystal mom to (11), (3, 4 in 3 days), Eva (23 month old CHARGEr) wife to Dan in Illinois www.babysites.com/sites/crystalm1476/ > > Hello everyone. Well, we have been away for a while and I am way behind on messages. As much as I would like to go back and read all of them, it is not going to be possible. Hopefully I can skim through and get a feel for what has been going on with everyone. I hope all of you have been doing well. > > A little update on . She just turned 4 last month and is doing really good. I actually looked at her the other day and for the first time since she was born, I just saw a typical little girl. We seem to have some of those moments now and then, but most of the time, there is something CHARGE related going on. We are traveling Thursday to get her BAHA softband loaner. They have been doing some testing and want to try it for a while. She keeps asking me when she gets her BAHA so I think she must have liked it when they tried one on her. She has had a few colds, and was in the hospital a couple of times since November, but otherwise healthy. She has started seeing endo because she has dropped off the curve on the growth chart. They have done some testing, but so far nothing has shown abnormal. We go back in a few months to see where we go from here. She is very sassy these days and thinks she is the boss of everyone. We still have many behavior issues and some days are > really bad. Phil has a huge scratch on is face from one of our escapades. We are trying to get a handle on it, but it's been hard. We have had many changes lately and that has not helped. > > We moved out of our house and in with my mother-in-law. We were going to sell our house and live there for a while, but it just wasn't working. We moved back into our house and I went back to work. That has been difficult, but we have to make it work. My mother-in-law still has a hard time understanding everything with and I tend to get frustrated about it. I try not to, but it happens. She seems to think that we have no debt other than our house so why can't we afford it on just Phil's income. I have tried to explain the medical aspect to her, but she just doesn't get it. We just knew that living there was not going to work out. Now that I am working, I feel like I am not able to keep up on all the " stuff " . For example, we have and IEP meeting this week and I am not really prepared for it. I am hoping that as time goes on, it will all become easier. HaHa who am I kidding? > > Anyway, I am hoping to keep up on the list from now on since all of you are what keeps me sane. I hope everyone is good and it is good to be back. > > Lee > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in a couple weeks > > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Yahoo! Travel to find your fit. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Sounds like a plan, send me an email when you are aviable more, we have the next few weekend full also so after the 22nd of April we are all free. Talk to you soon, Crystal and Eva supermama95 @ yahoo.com There are no spaces in my email address but that is the only way it will all show on here. > > > > Hello everyone. Well, we have been away for a while and I am way > behind on messages. As much as I would like to go back and read all > of them, it is not going to be possible. Hopefully I can skim > through and get a feel for what has been going on with everyone. I > hope all of you have been doing well. > > > > A little update on . She just turned 4 last month and is > doing really good. I actually looked at her the other day and for > the first time since she was born, I just saw a typical little girl. > We seem to have some of those moments now and then, but most of the > time, there is something CHARGE related going on. We are traveling > Thursday to get her BAHA softband loaner. They have been doing some > testing and want to try it for a while. She keeps asking me when she > gets her BAHA so I think she must have liked it when they tried one > on her. She has had a few colds, and was in the hospital a couple of > times since November, but otherwise healthy. She has started seeing > endo because she has dropped off the curve on the growth chart. They > have done some testing, but so far nothing has shown abnormal. We go > back in a few months to see where we go from here. She is very sassy > these days and thinks she is the boss of everyone. We still have > many behavior issues and some days are > > really bad. Phil has a huge scratch on is face from one of our > escapades. We are trying to get a handle on it, but it's been hard. > We have had many changes lately and that has not helped. > > > > We moved out of our house and in with my mother-in-law. We were > going to sell our house and live there for a while, but it just > wasn't working. We moved back into our house and I went back to > work. That has been difficult, but we have to make it work. My > mother-in-law still has a hard time understanding everything with > and I tend to get frustrated about it. I try not to, but it > happens. She seems to think that we have no debt other than our > house so why can't we afford it on just Phil's income. I have tried > to explain the medical aspect to her, but she just doesn't get it. > We just knew that living there was not going to work out. Now that I > am working, I feel like I am not able to keep up on all the " > stuff " . For example, we have and IEP meeting this week and I am not > really prepared for it. I am hoping that as time goes on, it will > all become easier. HaHa who am I kidding? > > > > Anyway, I am hoping to keep up on the list from now on since all > of you are what keeps me sane. I hope everyone is good and it is > good to be back. > > > > Lee > > Mom to 4 yrs CHARGE, Marissa 6 yrs, and Dalani 11 yrs in > a couple weeks > > > > > > > > --------------------------------- > > Now that's room service! Choose from over 150,000 hotels > > in 45,000 destinations on Yahoo! Travel to find your fit. > > > > Quote Link to comment Share on other sites More sharing options...
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