Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Amy, Welcome to the list!!! This has been a topic lately on the list, so I will ask. Has Lorna had the FISH study to test for VCF/Di sequence? If not, that would be a good way to " know for sure " . But you know what? Regardless of which it is, you have come to the right place because the 2 syndromes can overlap and all these moms and dads here can be of GREAT help and support. Good luck!! Foley, Mom to 3 1/2, ( my CHARGE guy in heaven , died when he was 6 months old) and Jillian , 1 year w/cHaRgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Kerry, , and , Welcome to the list!!! it's a great place for info to deal with issues may have and also the support and shoulders to " vent " on are great!!! Foley, Mom to 3 1/2, CHARGE guy in heaven, and Jillian 1 w/cHaRgE in Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 In a message dated 99-04-01 12:47:40 EST, you write: << she would have lorna in a sitting position and put a toy on either side of her (just out of reach) and she would show her to put one arm down while grabing the toy with the other. It took a few weeks for her to get it, >> Amy, My PT is also trying this with Jillian. No luck yet. Foley in Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Amy & Lorna, Welcome to the list, this place has been my sanity haven over the last year, I hope you find it useful, I don't know what we'd have done without it! Mom to Kennedy 14 mos old CHARGEr, 9, 7 and wife to Graeme New Brunswick Canada gweir@... http://www.geocities.com/SunsetStrip/Palms/5716/index.html >From: clugston@... > >I joined the list a week ago. My daughter is 2 1/2 and will be 3 in july. We first heard about charge when she was 6 months, the gentics said maybe charge. The next few appt. with them they said she fits best in charge but some things don't fit, she also has some features of VCF. It is hard not to no for sure. > >It has been interesting to read all the mail.I have been reading the list for a week. Some things are similar to some of Lorna's problems. She has ASD, head and facial assematry, cupped ears, Growth and developemental delays, Reflux, Purple/Blue hands and feet and some similar fetures. > >It is great to be here with you all. > >Amy mom to Lorna(2 1/2)Possible Charge. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 , Thanks for the welcome, I think I'll enjoy it hear. Amy mom to lorna possoble charge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Kerry, & , Welcome to the list, I hope you enjoy it, our daughter is 14 months old and we've really come to depend on this list! As for the milk thing, I don't think that it is uncommon for them not to tolerate " real " milk. Kennedy is on Alimentum - which is milk free, soy free. She is switching to Vivonex this week which is the same thing, except it's the kid's formula. Mom to Kennedy 14 mos old CHARGEr, 9, 7 and wife to Graeme New Brunswick Canada gweir@... http://www.geocities.com/SunsetStrip/Palms/5716/index.html >From: queenbee74@... > >Hi everyone, > > We are new to the list our son is 2 1/2 years old. We had never heard of charge until he was born they diagnosed him with it the same day. He has had 11 surgery's. We just found out a month ago that he has a immune defincey and will have to have a transfusion once a month. > > He has a G-Tube that we feed him with because when he was 2 months old he aspirated and had not gained much weight. I am going to talk to his doctor about the fish test to see if they will do it to see if he might have something else wrong with him. will not drink regular milk at all I don't know why. He gets Pediasure with Fiber for his feedings put in by a feeding pump. > Well if anyone lives in Oklahoma let he know maybe we can get together sometime, we are in Tulsa. Well got to go for know I have really enjoyed reading all >the mail and have learned alot. Thanks for listening. > > >Yours Truly, > >Kerry & >Parents of D CHARGEr > > > >------------------------------------------------------------------------ >If you like orange and blue, then you will love our new web site! >http://www.onelist.com >Onelist: ing connections and information exchange >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Hi Kerri and , Welcome to the List. I am sure you will now feel like you aren't the only people in the world dealing with Charge. I know it made a great difference for us! We are not in Oklahoma but are pretty near to you. We live just outside of Wichita, KS. Actually, we went through Tulsa twice last year on our way to visit relatives in Arkansas. Maybe someday we can meet up! My son is 4 years old. Take care, Jacque Clifton wife to Steve, mom to Austin (4 - Charge) and (1 on 4/29!!!) Rose Hill, KS Quote Link to comment Share on other sites More sharing options...
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