Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 glad you are doing better, and that Aari is going strong and growing--keep it up, I see fewer names are the extra members of your tribe gone now? maria, mom to timmy 6 ChARGE, keegan, and liam , wife to pat Buncha Stuff (long) > Hi All, > > Finally coming out of lurk mode, sorry, I was pretty sick about > three weeks ago, they out me on some meds that had me throwing > up for three days so they changed it to something that I have taken > quite a few times before and ended up having an anaphilactic (sp) > reaction to that antibiotic (take my word on it that's one scary ride > to the ER (almost 30 miles to the nearest ER up here)when you > are swelling up and can barely breath, can guess now what some > of our kids go through) > > But anyway... > > Welcome to all the new people on the list, I am so glad to see our > CHARGE family growing and catching families when the babes are > so young. > > , I am sooooo glad you found us. As an adult with CHARGE > you are able to give some insight to the families about thier kiddos > that no one else can. Thank you..... > > Pushpa, Aman is such a sweety, I am sorry he is unwell at this > time, seizures are so scary. One thought on them, have they > checked his blood sugar, sodium or cortisol levels (low levels of > either can cause seizures) ? As with most midline defects the > pituitary and hypothalmus can be involved which regulates these > levels. > > ('s mom) what a doll.. as others have said our kids like > spicy and flavorfull stuff, Aari likes to scarf down salsa I used to > threaten to put pepper sauce in his bottles LOL.. He'll get there, > one thing about our kids is that they will do what they will do in > their own good time. > > To those new I have missed...... Welcome to the family !!!!!!! > > On the homefront here..... > > Aari has grown an inch and a half since getting the GHT (three > months) and has put on 5 pounds... but it's not his growth that we > are noticing (well we are as I just had to go out and buy him all new > clothes LOL I loved it) but the stamina and muscle stuff.. he was > messing around last week at the docs and actually did 10 pullups > on a bar there (never could do that before), his teachers say that he > is not tiring out so much during PE lately.. His cogitive stuff has > really gone wacky, his reading has inproved so much tht he was > just in here correcting my spelling LOL...and boy I thought he ate a > lot before.. this morn he's had 2 Ensure Plus, peanut butter toast > and a pizza (His fav, individual cheese pizzas from Schwans) and > it's only 9:30am.. it's a joke around here that since getting the GHT > the grocery bill has doubled. Geez I can't believe he's gonna be 10 > on a few weeks > > The other two are doing OK.. Ken has a girlfriend.. she's a sweety > and doesn't let him get away with anything.. I love it when she > chews him out over something and he just says 'Yes Dear'.. Dawn > will prolly have to have surg on her ear next month again.. 14th set > of PE tubes and surgical cleaning of her middle ear and a pocket of > infection that hasn't cleared with anitibiotics (from the > mastiodectomy she had done at 9yo), possible reconstuction again > of the middle ear (don't know if that one will work as it's been done > before and she only regained her hearing for about 6 months before > it scared over and she lost her hearing again) > > Well this has been long enough and I have another to write soooo.. > > Thank you all for being here... > > > Casey > Mom to Dawn 22 HH, Ken 12 ADHD, 9 CHARGE > ICQ 728514 AIM ZeeCasey > CHARGE Web Page: > http://www.geocities.com/Heartland/1220 > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 , Yup they are gone... kinda.. I still get em about every two weeks for a couple days. Casey Mom to Dawn 22 HH, Ken 12 ADHD, 9 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Casey, Ken with a girlfriend, that must be so cute! Great to hear of Aari's growth, hope it keeps up ( I also hope we get to see the kids again in Cleveland - I'm actually thinking of bringing the whole fam damily to that one!) Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In the depths of winter I finally learned there was in me an invincible summer. " -Albert Camus Buncha Stuff (long) Hi All, Finally coming out of lurk mode, sorry, I was pretty sick about three weeks ago, they out me on some meds that had me throwing up for three days so they changed it to something that I have taken quite a few times before and ended up having an anaphilactic (sp) reaction to that antibiotic (take my word on it that's one scary ride to the ER (almost 30 miles to the nearest ER up here)when you are swelling up and can barely breath, can guess now what some of our kids go through) But anyway... Welcome to all the new people on the list, I am so glad to see our CHARGE family growing and catching families when the babes are so young. , I am sooooo glad you found us. As an adult with CHARGE you are able to give some insight to the families about thier kiddos that no one else can. Thank you..... Pushpa, Aman is such a sweety, I am sorry he is unwell at this time, seizures are so scary. One thought on them, have they checked his blood sugar, sodium or cortisol levels (low levels of either can cause seizures) ? As with most midline defects the pituitary and hypothalmus can be involved which regulates these levels. ('s mom) what a doll.. as others have said our kids like spicy and flavorfull stuff, Aari likes to scarf down salsa I used to threaten to put pepper sauce in his bottles LOL.. He'll get there, one thing about our kids is that they will do what they will do in their own good time. To those new I have missed...... Welcome to the family !!!!!!! On the homefront here..... Aari has grown an inch and a half since getting the GHT (three months) and has put on 5 pounds... but it's not his growth that we are noticing (well we are as I just had to go out and buy him all new clothes LOL I loved it) but the stamina and muscle stuff.. he was messing around last week at the docs and actually did 10 pullups on a bar there (never could do that before), his teachers say that he is not tiring out so much during PE lately.. His cogitive stuff has really gone wacky, his reading has inproved so much tht he was just in here correcting my spelling LOL...and boy I thought he ate a lot before.. this morn he's had 2 Ensure Plus, peanut butter toast and a pizza (His fav, individual cheese pizzas from Schwans) and it's only 9:30am.. it's a joke around here that since getting the GHT the grocery bill has doubled. Geez I can't believe he's gonna be 10 on a few weeks The other two are doing OK.. Ken has a girlfriend.. she's a sweety and doesn't let him get away with anything.. I love it when she chews him out over something and he just says 'Yes Dear'.. Dawn will prolly have to have surg on her ear next month again.. 14th set of PE tubes and surgical cleaning of her middle ear and a pocket of infection that hasn't cleared with anitibiotics (from the mastiodectomy she had done at 9yo), possible reconstuction again of the middle ear (don't know if that one will work as it's been done before and she only regained her hearing for about 6 months before it scared over and she lost her hearing again) Well this has been long enough and I have another to write soooo.. Thank you all for being here... Casey Mom to Dawn 22 HH, Ken 12 ADHD, 9 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 , It would be great if you could bring everyone to the conference! Janet Wife to Matt Mom to 9 (CHaRGEr), 9, nne 4 1/2 Mom to Debi 17, Brittany 15, 4 Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 I'm hoping...(fingers crossed) Lis Re: Buncha Stuff (long) , It would be great if you could bring everyone to the conference! Janet Wife to Matt Mom to 9 (CHaRGEr), 9, nne 4 1/2 Mom to Debi 17, Brittany 15, 4 Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 Hi Casey, I didn't have a chance to write to you earlier but I have been wondering how you're feeling these days. Sounds like you're constantly on the go ( a must for you!). Take care of yourself, Anne, mom of Penina (CHArgE, 5.5 years old) > Quote Link to comment Share on other sites More sharing options...
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