Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 Hi , The MAGIC Foundation web site is at www.magicfoundation.org Dr. Harbison will be speaking at the MAGIC Foundation conference on July 23. The conference is July 22-25. I believe the web site can give you all of this information, too. Dennise Hi! >From: STYCK5@... > >Hi All, > >Sorry I haven't written lately. I just haven't had anything new to report. >I probably won't until Tami goes to the hospital in July. I have been >reading your letters on a regular basis though. My Dr. also labeled my >daughter as " failure to thrive. " This really upset me too. Especially since >I kept asking him why she was not progressing and catching up as he said she >would. She was a preemie. I have since fired him and found a new Dr. that >took one look at Tami and sent her to Chicago for testing. She was appalled >that my Dr. hadn't done anything before then. (She was 18 months old.) >Getting a new Dr. was the best thing I have done for Tami. : ) > >I have been trying to get to the Magic Foundation website and have had no >luck. I must have the wrong address. Can someone please send me the link >for it? I have also been trying to find out the dates and time that Dr. H. >is going to be in Chicago. If anyone has this information can you please >pass it along? > >Hope to hear from you soon. > > > >Mother of Tami 9 yrs, 45 lbs > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 ALRIGHT STORM!!!!!!! Congratulations on all the good news, we are soooooo proud of you! I know what it's like to FINALLY get some good news for a change. Best Wishes! Stacie Wife to Tim, Mommy to daughter, - 6 yrs. and son, - 2 1/2 yrs. (19 1/2 lbs. & 30 1/4 in.) with RSS, Assemytry, & g-tube Carmen Snyder wrote: > > > Hi everyone. I have some great news to report on Storm. He has grown and > gained more weight in the last four months than he ever has before. The > Dr.s are baffled. His growth curve went from ----- to / It is so exciting. > He grew an entire inch and 1/4 and he gained 2 pounds!!! He is up to 22 lbs > and 6 ozs now and 33 1/4 " tall. We are so excited. His legs look so long. > His pants are still way too big around the waist when we get them long > enough for his legs. Summer is great because of shorts. He still wears a > 12 months size in those. With no diapers to hold them up we sometimes have > to pin them in the back until they shrink a little in the dryer. > The Dr.s decided to take him off the propulsid due to his wetting problem > and off the zantac too since he seems to be doing fine without it. They > also decided to put off any growth hormones and to hopefully forget about > any g-tubes or fundo surgery, which I am the most excited about. I was > scared to death... > Storm also had his second set of tubes in April and his hearing is perfect > again. His speech is improving also. We are just elated right now. He > eats constantly and his new favorite term is " I'm hungry! " > > The gastro gave us samples of Boost Plus. It has 360 calories for only 8 > ozs of drink. Storm loves it. He drinks about one a day and still eats > just as much. Can't wait to see how much he grows in the next 4 months. > They usually do grow more in the summer, because they just don't get sick as > much. > He will be 4 in August, and all he can talk about is Star Wars and his > birthday coming soon. > He is such a cutie!!! But what a temper. > > Well just catching up! > God bless everyone! > Carmen, Wife to , mom to Paisley 6, and Storm almost 4 RSS 33 1/4 " > and 22lbs and 6 ozs!!!!! > Ken---- Good luck on job hunting! > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 1999 Report Share Posted June 29, 1999 Carmen, Great news about Storm's weight gain! But I had to chuckle when I read the part about summertime and the shorts being too small. We live in Monterey, CA, where it's usually cool and foggy in the summer (even more so this year, thanks to " La Nina " ). But last weekend we went to a church picnic over in Carmel Valley, where it's always warm and sunny. The only shorts I could find for Josh were the same 24-month size ones he wore last year, and they STILL kept sliding down his legs at the park - poor little guy! (And we didn't have a safety pin to hold them up.) Also, you wrote: > The gastro gave us samples of Boost Plus. It has 360 calories for only 8 > ozs of drink. Storm loves it. He drinks about one a day and still eats Please tell us more about Boost Plus. Who is the manufacturer, where can we get it? How does it compare to ScandiCal? - Joe, father to , age 4, 22 pounds, 33 inches, Gtube Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 1999 Report Share Posted July 3, 1999 hello again. Things are crazy here so I don't have much time to write anymore, but I read email almost every day. Storm is still doing well. It is so nice that he doesn't throw up every day any more. The Boost Plus I got from Wal-Mart. It comes in Choc. Vanilla and Strawberry. Storm loves the chocolate. It doesn't have that formula tast. Although his gastro did say for children over 2. You have to get the Boost PLUS or it wont have the extra calories. He thinks its just chocolate milk. He hasnt had any type of formula since he was about 20 months old, I guess he should have, but I thought I was supposed to get him off formula by age one, so I thought I was even late with that. I am sooo greatful for this listserve! What a great support to know that we are not the only ones. I just wish I could actually meet someone. The Dr. keeps telling me that Storm could be the poster child for RSS because he really has the features, only no assymmetry so far!! knock on wood!!! Any way, How could I get to see Dr. Harbison? and will insurance pay even though she is out of state? Does anybody know? I live in Texas!!! Carmen , Mom of Paisley 61/2, and Storm (almost 4) 22 lbs. 6 oz, and 33 1/2 " RSS and all the looks to go with it. Fingers, toes, teeth, triangle face, small chin, etc, etc, etc...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 > > >hello again. > >How could I get to see Dr. Harbison? and will insurance pay even >though she is out of state? >Does anybody know? >I live in Texas!!! >Carmen , Mom of Paisley 61/2, and Storm (almost 4) 22 lbs. 6 oz, and 33 >1/2 " RSS and all the looks to go with it. Fingers, toes, teeth, triangle >face, small chin, etc, etc, etc...... Hi Carmen, I know what you mean about things being crazy! Summer is here!! Dr. Harbison's phone # is (212)746-3462. She has a very nice assistant named who will take good care of you when you call. If you plan ahead to go to NYC, they can probably give you an appointment when you will be there. When I called this last visit, I just asked for a date which was two months from the time I called and they put me right in. We live in Maine and our insurance pays our 80% for the visits to her, so it may depend on your insurance company. You might want to give them a call. I was very glad to see in a prior note that Storm had done so well growth-wise!! Keep up the great work! Dennise Mom to Ross 5, 37 3/4 " , 26.5 lbs., asymmetry, Periactin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Hi, I was so excited to discover your group! I have CFS and Fibromyalgia. I was diagnosed in 1992. I am unable to work because of the effects of this disease. Like many others who suffer form this disease I have good days and bad days but I take them as they come...one day at a time. I have 3 boys ages 16, 10 and a new miracle from aove an 8 month old! The Lord does have a sense of humor! :-) I am 38 years old (although there are days I feel more like 83!) I am happily married and live in Chattanooga,Tennessee. My strength to get through those " bad " days comes from my family and a loving God who never leaves me nor forsakes me and when I am too weak to come to Him...He comes to me where I am. I am looking forward to reading your messages and getting to know many of you so feel free to email me if you'd like. God Bless each of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Regina, Welcome to the group. I am sorry to hear that you have Fibro, but doesn't it feel good to finally get the diagnosis and stop wondering if you are going nuts? This group is wonderful.....there are a lot of really caring individuals here that have a load of information so feel free to ask any questions you may have. I too rely on God to get me through my days and he is ever faithful. It's nice to know that someone else has the same kind of faith. I am married - 21 years and have 3 kids - boy, age 20, girl, age 19 and girl, age 18 and I was just recently blessed with my first grandchild - a boy born July 17th. I look forward to getting to know you better. Debbie G. Hi! > Hi, I was so excited to discover your group! I have CFS and > Fibromyalgia. I was diagnosed in 1992. I am unable to work because > of the effects of this disease. Like many others who suffer form > this disease I have good days and bad days but I take them as they > come...one day at a time. I have 3 boys ages 16, 10 and a new > miracle from aove an 8 month old! The Lord does have a sense of > humor! :-) I am 38 years old (although there are days I feel more > like 83!) I am happily married and live in Chattanooga,Tennessee. > My strength to get through those " bad " days comes from my family and > a loving God who never leaves me nor forsakes me and when I am too > weak to come to Him...He comes to me where I am. I am looking forward > to reading your messages and getting to know many of you so feel free > to email me if you'd like. God Bless each of you. > > > ------------------------------------------------------------------------ > To email plain text is conventional, to add graphics is divine. > We'll show you how at www.supersig.com. > http://click./1/6811/6/_/442796/_/964190289/ > ------------------------------------------------------------------------ > > > ~*~CHAT TIME:~*~ > MON & THURS > Day Eastern 4 PM, Central 3 PM, Mt 2 PM Pacific 1 PM > Night Eastern 9 Pm, Central 8 Pm, Mt 7 PM Pacific 6 PM > WHERE: /chat/ > > > VIP > If there is a problem on this list notify. > Co-Moderator > The_List_Owner@... > > > Add or view links about fibro/CFS. > http://www.onelist.com/links/ > > TO unsubscribe. > Go to: http://www.onelist.com/ to this list and unsub from it. > > > > > > Quote Link to comment Share on other sites More sharing options...
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