Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Debbie, Nice to hear someone else sharing the same things. use to be compulsive about her socks and the seams that go across the toes! Making up her mind is a big problem, from deciding on what circle to bubble in in school to choosing something from the store...nothing is quick. She too, holds her sleeve to put on her coat. Also she is compulsive about wiping after using the bathroom...she uses so much toilet paper! She also puts off going to the bathroom until it is almost too late. She goes infrequently...sometimes I have to make her go and sit, and of course, she always has to go. After increaseing her dosage, she has started throwing things when she gets angry. She used to hit the wall and kick things. 's birthday is January 1. We live in Columbia, SC...where are you? CHARGE wrote: There are 18 messages in this issue. Topics in this digest: 1. Re: Amelie Surgery news From: " Chantelle " 2. Re: Charge & Divorce From: " Chantelle " 3. Re: Re: question for Illinois CHARGE moms From: Lee 4. Re: What medications work best for y'all? From: DeAnne Rease 5. Re: goes back tomorrow From: Weir 6. Chantelle - From: Weir 7. RE: Re: What medications work best for y'all? From: Debbie Matasker 8. Re: Re: question for Illinois CHARGE moms From: " Michele Westmaas " 9. Re: Re: Sleep study results are back----worrying mommy From: " Michele Westmaas " 10. Re: goes back tomorrow From: " Michele Westmaas " 11. Re: Re: question for Illinois CHARGE moms From: " Michele Westmaas " 12. Re: Re: Home from the hospital From: Kauffman 13. Frequent Spitting up, despite Nissen From: " aarusso03 " 14. Re: question for Illinois CHARGE moms From: " Meg Hefner " 15. Re: Re: question for Illinois CHARGE moms From: " Michele Westmaas " 16. Re: Sleep study results are back----worrying mommy From: " Hartshorne, S " 17. Re: Re: Sleep study results are back----worrying mommy From: " Michele Westmaas " 18. GOOGLE From: " Yuka Persico " ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Wed, 04 Jan 2006 12:41:49 -0000 From: " Chantelle " Subject: Re: Amelie Surgery news Hey Ellen, i didnt know that the australian president went to war too. Wouldnt put it past him with his stand on immigrants and a few other policies he has. I dont know too much about him. Chantelle ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: Wed, 04 Jan 2006 12:47:02 -0000 From: " Chantelle " Subject: Re: Charge & Divorce Ugh you know what. I swear my parents have compleatly reverced from the way they thought when i was a little kid. Now my dad is totaly into understanding the medical issues, understands that i do have vision and hearing and totaly bends over backwards to help me out, yet my mom is in compleat denile that i have hearing and vision problems! She feels that ive done well so far so i dont need any of the adaptive supports. She has even gone as far and saying i dont really need glasses and hearing aids make me hear better then everyone elce! UGH!!!! lol. Well i did read (in psycology class) that does happen. Now if only i could get the dang adaptive tec stuff!!!!! Chantelle ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Wed, 4 Jan 2006 05:09:14 -0800 (PST) From: Lee Subject: Re: Re: question for Illinois CHARGE moms Crystal, I live in Pekin, just outside of Peoria. I know how scary it can be to leave your little one and go so far out of town when she is so young, but I know from experience it helps to get away. When was an infant, I was asked to go to a cranial facial meeting in Chicago to represent Central Illinois families. It was nice to get away for a day and visit with other families dealing with some of the same issues. I think you will find that going to the workshop will be a refreshing break. And you are doing all of this to help little Eva. If you go to the Philip J. Rock Center/Project Reach website, you could print out something for some of the professionals. http://project-reach-illinois.org/index.html If you go to the calender of events, it lists the workshops and a brief description. If you don't have the CHARGE manual from the CHARGE Foundation, I would recommend getting it. I think it is $25 for the manual and it is full of information. wasn't diagnosed with CHARGE until March of 2005 and I ordered it shortly after that. It has pages to give to professionals. 's therapists used it to learn about CHARGE. They have all been very interested in learning as much as they can about CHARGE. I read the manual after receiving it and I feel that it contributed in a big way to saving . She had an H type TE Fistula that had never been detected and when I read about it in the manual, I started talking to all her doctors about it because she was having a lot of problems. Finally, I found one of her doctors that would listen to me and look for it. Sure enough, it was there and has made many improvements since it has been repaired. Her ENT told us that it was a huge hole and that we are lucky to still have her with us after 2 yrs of it not being detected. Nobody was looking for something like that. Things do get better over time. will be 3 on Feb. 17th and she is doing wonderful. We still have issues to deal with but mostly they are behaviors and strange little things that she does. Most of the medical stuff is in the past. She is walking, trying to eat by mouth, talking some and signing up a storm. A year ago, I would not have imagined we would be were we are today. We would not be were we are today if I had not been able to get my hands on some of the information regarding CHARGE. I hope some of this helps to ease your worries. Let me know if you want to try to meet up to drive part way together. Lee Mom to 2 1/2 yrs CHARGE and my mean girl, Marissa 4 1/2 yrs - my girly girl (who cut her own hair off last Friday), & Dalani - 9 1/2 yrs - my little tomboy supermama95 wrote: , That would be awsome, where do you live? What town? If the driving thing doesnt work at least having someone to sit with and talk to will be great!! I am new at all of this and my mind is just swimming with info. Thanks, Crystal and Eva (8 month charger) > >> > >> To clarify -- this will not be the " Meg and Michele " show. It's > > an IL DB > >> professional presenting CHARGE using Meg's Powerpoint presentation > > followed > >> by me doing my family story. It's Meg's info -- but not Meg. Not > > exactly > >> the same thing. > >> > >> Michele > >> Re: question for Illinois CHARGE moms > >> > >> > >> > Guys, I would drive hours just to hear and see Meg and > > . They're > >> > great and well worth it. > >> > > >> > Plus there is that networking thing that's vital to everyone too. > >> > > >> > Go if you can! > >> > > >> > > >> > 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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