Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Wow! I would say eventful! I am so glad you are doing okay now! And the babies size! They sound like they are doing great, despite their mommy's discomfort! Hang in there, keep doing what ever you're doing and get some rest....I have a feeling that you are going to have two very active little bundles of joy soon! I'm keeping you and your little family in my thoughts! Say thank you to your parents for keeping us updated, we have been worried about you! UD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Wow! I would say eventful! I am so glad you are doing okay now! And the babies size! They sound like they are doing great, despite their mommy's discomfort! Hang in there, keep doing what ever you're doing and get some rest....I have a feeling that you are going to have two very active little bundles of joy soon! I'm keeping you and your little family in my thoughts! Say thank you to your parents for keeping us updated, we have been worried about you! UD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , I'm so glad for the positive news! it sounds like the babies are certainly thriving!!! Hang in there and keep us posted... 24 wks,2 days twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , I'm so glad for the positive news! it sounds like the babies are certainly thriving!!! Hang in there and keep us posted... 24 wks,2 days twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , I'm so glad for the positive news! it sounds like the babies are certainly thriving!!! Hang in there and keep us posted... 24 wks,2 days twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 I am so excited for you. Just think today you are STUCK on bedrest possibly next week you'll be begging for 1 hour of bedrest. 32 weeks is an amazing accomplishment. Hang in there! You are in my thoughts and prayers 31/UU/ttc3/IVF#1 transfer this past Monday > Hi everyone > I just wanted to check in with everyone. My Dad brought me a > laptop to the hospital so that I can check my email. I am still in > the hospital and will be here until the babies are born. Things are > going ok so I am able to stay at the hospital closer to my home. The > protein in my urine had gone up to 2800 (5000 is when I would need to > go to Rochester and the babies would probably be delivered). I had a > 24 hour test yesterday and my protein went down to 2300. This is a > good thing because my doctor was thinking that it had gone up. > The first few days I was in here were quite eventful. I came in > for the preeclampsia on Wednesday, on Thursday my doctor told me I > had gestational diabetes and mild preeclampsia and on Friday I > started preterm labor. They stopped the labor with medication which > I am now off. If I went into labor now she would let me go. I am > now 32 weeks 1 day. We had an ultrasound today and the babies are > doing great. The boy is up to 4#7oz and the girl is 4#2oz. I am > very excited about their size and both are practicing breathing. > Well things have been uneventful since the first week and now it is > just waiting. The less eventful the better it is. > Well I hope that everyone is doing well and I will try to catch > up on how things are going for everyone. > > > BU 32w 1d b/g twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 I am so excited for you. Just think today you are STUCK on bedrest possibly next week you'll be begging for 1 hour of bedrest. 32 weeks is an amazing accomplishment. Hang in there! You are in my thoughts and prayers 31/UU/ttc3/IVF#1 transfer this past Monday > Hi everyone > I just wanted to check in with everyone. My Dad brought me a > laptop to the hospital so that I can check my email. I am still in > the hospital and will be here until the babies are born. Things are > going ok so I am able to stay at the hospital closer to my home. The > protein in my urine had gone up to 2800 (5000 is when I would need to > go to Rochester and the babies would probably be delivered). I had a > 24 hour test yesterday and my protein went down to 2300. This is a > good thing because my doctor was thinking that it had gone up. > The first few days I was in here were quite eventful. I came in > for the preeclampsia on Wednesday, on Thursday my doctor told me I > had gestational diabetes and mild preeclampsia and on Friday I > started preterm labor. They stopped the labor with medication which > I am now off. If I went into labor now she would let me go. I am > now 32 weeks 1 day. We had an ultrasound today and the babies are > doing great. The boy is up to 4#7oz and the girl is 4#2oz. I am > very excited about their size and both are practicing breathing. > Well things have been uneventful since the first week and now it is > just waiting. The less eventful the better it is. > Well I hope that everyone is doing well and I will try to catch > up on how things are going for everyone. > > > BU 32w 1d b/g twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Hi ! I'm so glad to hear from you - and that both you and the babies are doing well!!!!! Sounds like you had quite a scare. I saw my baby practicing breathing last Monday - it's a beautiful sight isn't it? I hope things continue to be uneventful and the babies wait a bit longer to make their appearance. Feel good and know that you have lots of people thinking of you. ((((((((HUGS))))))) Tara BU 33w1d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Hi ! I'm so glad to hear from you - and that both you and the babies are doing well!!!!! Sounds like you had quite a scare. I saw my baby practicing breathing last Monday - it's a beautiful sight isn't it? I hope things continue to be uneventful and the babies wait a bit longer to make their appearance. Feel good and know that you have lots of people thinking of you. ((((((((HUGS))))))) Tara BU 33w1d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , Good to hear that all is ok with u and twins. Hang in there and the twins will be in your arms very soon! Rita Resected SU, 15w1d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , Good to hear that all is ok with u and twins. Hang in there and the twins will be in your arms very soon! Rita Resected SU, 15w1d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 , Good to hear that all is ok with u and twins. Hang in there and the twins will be in your arms very soon! Rita Resected SU, 15w1d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2002 Report Share Posted June 29, 2002 Oops, I mean 16w1d, not 15w1d! Now I'm over 4 months. :-) Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Thanks for the update! I still have quite a ways to go and am inspired by your progress.Just hang in there a little longer!! b/g twins 25 wks, 3 days Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 > I hope that everyone is doing well. Best wishes to all. > > > BU-b/g twins 33w2d , You are such a strong woman and you have such strong babies. I bet they will be a handful for you:-) Thank you for your kind words. I'll find out 7/26 if I'm having twins. Your story has helped so much. Hang in there from Iowa 31 UU-4w3d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 > I hope that everyone is doing well. Best wishes to all. > > > BU-b/g twins 33w2d , You are such a strong woman and you have such strong babies. I bet they will be a handful for you:-) Thank you for your kind words. I'll find out 7/26 if I'm having twins. Your story has helped so much. Hang in there from Iowa 31 UU-4w3d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 > I hope that everyone is doing well. Best wishes to all. > > > BU-b/g twins 33w2d , You are such a strong woman and you have such strong babies. I bet they will be a handful for you:-) Thank you for your kind words. I'll find out 7/26 if I'm having twins. Your story has helped so much. Hang in there from Iowa 31 UU-4w3d Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Best wishes for a speedy 5 days and as much comfort as you can find. Keep us posted Hollie K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Best wishes for a speedy 5 days and as much comfort as you can find. Keep us posted Hollie K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Best wishes for a speedy 5 days and as much comfort as you can find. Keep us posted Hollie K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 > Hi to everyone > Just wanted to drop a note and update everyone. I am now > 33weeks 2days. If I can hold out for 5 more days I can deliver at > the hospital that I am at and not have to go to Rochester in MN. , I'm glad that you are hanging in there. You are in my thoughts and I keep hoping every day that you will make it a little longer so you can deliver safely close to home. I'm glad that you are able to get into email and update us. It must be very difficult each day getting tested, being in the hospital away from DH and your kitties. I'm sorry that you have been uncomfortable. Hopefully time passes quickly for you and you are holding your sweet twins in your arms soon. Take Care, Sara 34, SU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi Tim, You have been very active with your work with CHARGE. I know I have printed off many of your emails and articles to file and use at our school as issues come up. I remember the one you wrote in the Charge newsletter about behaviour and finding the reasons for it, why it is occurring. My daughter has pretty much always been a fairly calm child (with some usual CHARGE tendencies-mild OCD-start/finish things, particular toys, etc.) but has always made friends from preschool up. She never really paid much attention to how other children looked at her-she was just one of the gang. Now that she is getting older she notices every now and then but she still has a pretty high self-esteem and she's just a regular kid at her school. She has a good group of friends and the whole school knows her and she's been accepted well - most children love to say " Hi " to her in the halls. Most of her teachers have been very supportive and encouraging as well (except where we had to change teachers in grade 1) and once with a teacher in grade 2 when was showing some " aggressive " behaviors (starting to stick up for herself really). The grade 2 teacher had been difficult from the beginning, not totally comfortable with in her class (as is fully integrated) and never really made herself " available " to , trying to leave most of the work to the assistant (WE HAVE A GREAT ASSISTANT!). Anyways, she started reporting that she felt was being " aggressive " with her peers (which has NEVER happened before). She reported that was " shoving " in line and " pushing " children away and reacting angrily. She didn't bother to find out WHY, she just felt needed some " anger management " classes. We tried for awhile to find out " WHY " this was happening. began communicating with us that particular children were " staring " at her, calling her names at lunch and running away from her. They tried to get other children to not stand by her in line in class and instead they would stand by her and stare, making faces, etc. just " pushed " them away. I copied your articles and other CHARGE articles about behaviour, vision, sight, (multi-sensory impairments) appearance, etc. and we met with the teacher. Sometimes they think that they can say to us whatever they like and expect that we should just accept it! The teacher was quite impressed that we had brought in these articles by a professional psychologist, who also happens to have experience with a child with CHARGE. We explained that always seemed comfortable with the way she looks, she didn't really notice any differences (the facial palsy, repaired cleft and nose, wears dark glasses and hat in school re light sensitivity, wears hearing aids, short stature, etc.) but as she is getting older, her knowledge has increased, her visual awareness of her surroundings and details are much better and her ability to hear with her aids has increased -and I think she's also becoming more aware of " stares " , etc., from new children at the school or others who don't know her. We reported what had discussed with us and that she didn't understand why these children were behaving this way. It was a very touchy situation for awhile (some teachers can be very territorial!) but the teacher finally came around and realized many of the issues that affect 's behaviour and how to deal with them. They actually set up a program in the school for many of the children who have various challenges and integrated a component about " self-esteem " (not " anger-management " ) and how to handle peer related situations. The teachers in grade 3 and 4 were absolutely EXCELLENT and has never had any other incidents like this. Her IEP now states as a goal, to help deal with the various issues related to CHARGE, whether, social, emotional, multi-sensory, etc. From our experience though, I think the teacher really sets the scene and mood for the class! To make this long story short - I want to thank you for all your articles and the information that you post! Pat Pat, , (14), (11-CHARGE) Rittgasser Keswick, Ontario Canada update Hi everyone, I've not been too active on the list recently, but have tried to at least look at the subjects being addressed. You may know that and are in Cleveland getting the electrical stimulation to the throat to see if we can teach to swallow. So far it is going well. I had a wonderful trip to New Zealand and Australia. I stayed with Bruce and Robyn in Christchurch. Jaecob's progress over the two years since I last saw him was amazing. The CHARGE conference in Melbourne was terrific. I presented my research on behavior (for the first time anywhere) which was very well received. I also presented on positive behavioral supports. and I did a workshop for parents of children 12 and older on behavior while Brown and Muir (she is a psychologist from Sydney) did one for parents of the younger children. Then it was on to Sydney. I presented some of my research and management of behavior issues to staff (mostly geneticists and pediatricians) at Sydney Children's Hospital. Then went to the National Deafblind Conference where I presented on the function of challenging behaviors. Brown did a fantastic overview of CHARGE at the same conference. I came home on a real high. On the 5th of August I am off to Munich for an international conference on Adlerian Psychology where I am talking about grief, and then on the 11th I am meeting with some of the German families of children with CHARGE. I am very excited about that. I am starting to become interested in what is called behavioral phenotyping. This is the investigation into what behaviors might be linked to particular genetic disorders. Graham is working on this by comparing the behavior of kids with CHARGE to those with other genetic disorders. The tricky thing is to sort out the various sources of the behavior, as I tried to suggest in my last email. For example, how much is due to the experience of pain and illness over time, how much is due to the communication difficulties some of you have been discussing recently, how much is due to stress and anxiety, how much to multisensory impairment, and then how much to brain dysfunction some of which may be genetic. It is very confusing, but if those of us who are researching the behavior keep it up, and those researching the gene at Baylor keep it up, at some point, we may be able to get close to understanding this very confusing set of behaviors. Tim Hartshorne Father of (and Josh, , Seth, , , ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Hi Tim, You have been very active with your work with CHARGE. I know I have printed off many of your emails and articles to file and use at our school as issues come up. I remember the one you wrote in the Charge newsletter about behaviour and finding the reasons for it, why it is occurring. My daughter has pretty much always been a fairly calm child (with some usual CHARGE tendencies-mild OCD-start/finish things, particular toys, etc.) but has always made friends from preschool up. She never really paid much attention to how other children looked at her-she was just one of the gang. Now that she is getting older she notices every now and then but she still has a pretty high self-esteem and she's just a regular kid at her school. She has a good group of friends and the whole school knows her and she's been accepted well - most children love to say " Hi " to her in the halls. Most of her teachers have been very supportive and encouraging as well (except where we had to change teachers in grade 1) and once with a teacher in grade 2 when was showing some " aggressive " behaviors (starting to stick up for herself really). The grade 2 teacher had been difficult from the beginning, not totally comfortable with in her class (as is fully integrated) and never really made herself " available " to , trying to leave most of the work to the assistant (WE HAVE A GREAT ASSISTANT!). Anyways, she started reporting that she felt was being " aggressive " with her peers (which has NEVER happened before). She reported that was " shoving " in line and " pushing " children away and reacting angrily. She didn't bother to find out WHY, she just felt needed some " anger management " classes. We tried for awhile to find out " WHY " this was happening. began communicating with us that particular children were " staring " at her, calling her names at lunch and running away from her. They tried to get other children to not stand by her in line in class and instead they would stand by her and stare, making faces, etc. just " pushed " them away. I copied your articles and other CHARGE articles about behaviour, vision, sight, (multi-sensory impairments) appearance, etc. and we met with the teacher. Sometimes they think that they can say to us whatever they like and expect that we should just accept it! The teacher was quite impressed that we had brought in these articles by a professional psychologist, who also happens to have experience with a child with CHARGE. We explained that always seemed comfortable with the way she looks, she didn't really notice any differences (the facial palsy, repaired cleft and nose, wears dark glasses and hat in school re light sensitivity, wears hearing aids, short stature, etc.) but as she is getting older, her knowledge has increased, her visual awareness of her surroundings and details are much better and her ability to hear with her aids has increased -and I think she's also becoming more aware of " stares " , etc., from new children at the school or others who don't know her. We reported what had discussed with us and that she didn't understand why these children were behaving this way. It was a very touchy situation for awhile (some teachers can be very territorial!) but the teacher finally came around and realized many of the issues that affect 's behaviour and how to deal with them. They actually set up a program in the school for many of the children who have various challenges and integrated a component about " self-esteem " (not " anger-management " ) and how to handle peer related situations. The teachers in grade 3 and 4 were absolutely EXCELLENT and has never had any other incidents like this. Her IEP now states as a goal, to help deal with the various issues related to CHARGE, whether, social, emotional, multi-sensory, etc. From our experience though, I think the teacher really sets the scene and mood for the class! To make this long story short - I want to thank you for all your articles and the information that you post! Pat Pat, , (14), (11-CHARGE) Rittgasser Keswick, Ontario Canada update Hi everyone, I've not been too active on the list recently, but have tried to at least look at the subjects being addressed. You may know that and are in Cleveland getting the electrical stimulation to the throat to see if we can teach to swallow. So far it is going well. I had a wonderful trip to New Zealand and Australia. I stayed with Bruce and Robyn in Christchurch. Jaecob's progress over the two years since I last saw him was amazing. The CHARGE conference in Melbourne was terrific. I presented my research on behavior (for the first time anywhere) which was very well received. I also presented on positive behavioral supports. and I did a workshop for parents of children 12 and older on behavior while Brown and Muir (she is a psychologist from Sydney) did one for parents of the younger children. Then it was on to Sydney. I presented some of my research and management of behavior issues to staff (mostly geneticists and pediatricians) at Sydney Children's Hospital. Then went to the National Deafblind Conference where I presented on the function of challenging behaviors. Brown did a fantastic overview of CHARGE at the same conference. I came home on a real high. On the 5th of August I am off to Munich for an international conference on Adlerian Psychology where I am talking about grief, and then on the 11th I am meeting with some of the German families of children with CHARGE. I am very excited about that. I am starting to become interested in what is called behavioral phenotyping. This is the investigation into what behaviors might be linked to particular genetic disorders. Graham is working on this by comparing the behavior of kids with CHARGE to those with other genetic disorders. The tricky thing is to sort out the various sources of the behavior, as I tried to suggest in my last email. For example, how much is due to the experience of pain and illness over time, how much is due to the communication difficulties some of you have been discussing recently, how much is due to stress and anxiety, how much to multisensory impairment, and then how much to brain dysfunction some of which may be genetic. It is very confusing, but if those of us who are researching the behavior keep it up, and those researching the gene at Baylor keep it up, at some point, we may be able to get close to understanding this very confusing set of behaviors. Tim Hartshorne Father of (and Josh, , Seth, , , ) Quote Link to comment Share on other sites More sharing options...
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