Notice of Event: GA1 Social Friday September 12th 5:00 pm Clinic for Special Children 535 Bunker Hill Road Strasburg, PA 17579 RSVP to HYPERLINK...
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Tracy Jamison
superbusymom3
Sep 16, 2008 5:59 pm
Hi I did find out that the money we were suppose to be getting to come to the conference doesn't cover travel expenses ( gas) so we will not be able to make it...
1866
Shantel Matthews
shantelmatthews
Sep 8, 2008 4:57 pm
You can call whenever a good time is. I am at home today recovering from sinus surgery last Thursday, but I didn’t realize the recovery was going to take...
1865
cswelch1@...
sangiovese
Sep 8, 2008 4:48 pm
shantel i was awy the entire wkend at a retreat for women with breat cancer in the poconos... will call ya tonight after 8 if thats ok cay On Sun, Sep 7, 2008...
1864
Wanda Shelton
joshcrazy04
Sep 8, 2008 4:32 am
I wish I could go. Hoped I could go every year since I had Shelton -- but the money is never right come this time of the year! Have fun guys! Wanda mom of...
1863
cswelch1@...
sangiovese
Sep 8, 2008 2:39 am
so far 7 families.. will call you monday nighgt cay On Sun, Sep 7, 2008 at 4:48 PM, Shantel Matthews wrote: Hi Cay, I just tried to call you and left you a...
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Shantel Matthews
shantelmatthews
Sep 7, 2008 8:48 pm
Hi Cay, I just tried to call you and left you a message. I will pick up a few inexpensive things. They liked those balloon rockets that one year and I will...
1861
amelamel90
Sep 3, 2008 10:50 pm
Thank you Cindy!!!!! No, we did not put her on any sorts of diet because all tests showed normal enzyme production. Since she is only a carrier, her doctor...
1860
amelamel90
Sep 3, 2008 10:45 pm
Hi All, We did her urine tests and she had elevated glutaric acid. We then did lysine loading studies and she again had elevated glutaric acid but not huge...
1859
Fleck Family
zoesmom323
Sep 3, 2008 7:14 pm
How/why did they decide to continue testing for an alternate diagnosis? My daughter was łdiagnosed˛ off of her newborn screening results and had subsequent...
1858
cindy hill
cindync23
Sep 1, 2008 1:13 am
That is GREAT news! And thank you for sharing your update! Have they put her on any kind of a diet, or a watch list of limited foods? Just in case of an enzyme...
1857
cswelch1@...
sangiovese
Aug 31, 2008 2:20 pm
shantel what a cute idea balloon and clowns for the kids... now to find one in strasburg will be the struggle.. i hate to bother the Mortons as they are so...
1856
amelamel90
Aug 31, 2008 2:27 am
Hi All, I posted here earlier about my now 19 month old daugther that had elevated glutaric acid. After repeated tests that have showed high glutaric acid in...
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Shantel Matthews
shantelmatthews
Aug 29, 2008 8:20 pm
Hi Cay, I will bring a few games that the children can play on their own, like the bean bag toss. I don’t have funds to make treat bags or anything like...
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cswelch1@...
sangiovese
Aug 23, 2008 5:22 pm
shantel looking forward to seeing you.. we are staying at the Amish Inn this year. The OAA meeting in pittsburgh was great in july Morton was there too........
1853
Tracy Jamison
superbusymom3
Aug 15, 2008 4:21 am
Destiny gets headaches once every week or so?! http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home2_082008 [Non-text portions of this message have...
1852
Shantel Matthews
shantelmatthews
Aug 15, 2008 2:56 am
Hi Wanda. I don’t know what to tell you about the headaches. Sometimes Heather gets them too. I don’t know if it is from eating too much protein or what...
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WANDA
leas.granma
Aug 15, 2008 2:38 am
Hi all I haven't posted in a while . I sure hope everyone is having a nice summer.My concern is about my grand daughter Aliyah, has been having a headache for...
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Tracy Jamison
superbusymom3
Aug 12, 2008 7:47 pm
I have booked at the Weathervane for this year ( normally we just find a hotel that night) I would recomend booking in advance hotels are already filling up....
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cindy hill
cindync23
Aug 8, 2008 3:21 am
We stayed at the weathervane Motor Inn last year and was really pleased with our stay. It was very cheap, (about $70 a night) and very VERY clean. No problems...
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Tracy Jamison
superbusymom3
Aug 6, 2008 11:34 pm
both of those hotels are booked to let everyone know http://www.windowslive.com/default.html?ocid=TXT_TAGLM_WL_Home_082008 [Non-text portions of this message...
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Shantel Matthews
shantelmatthews
Aug 6, 2008 10:53 pm
The Bird in Hand Family Inn is by far the best…nice pool. Fulton Steamboat Inn would probably be my 2nd pick if Bird in Hand Family Inn is full (they fill...
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jennyboo23@...
gamommyinny
Aug 6, 2008 9:52 pm
... To: glutaric_acidemia@yahoogroups.com Sent: Aug 6, 2008 5:49 PM Subject: GA social We are coming this year too and have reserved a cabin at the Spring...
1845
Tracy Jamison
superbusymom3
Aug 6, 2008 5:47 pm
Cay usually knows of a good hotel but we didn't book early enough last yera we just went around checking for a vailabilty I think we stayed at a motel 8 or...
1844
Dena
mygirlskhs
Aug 6, 2008 5:24 pm
Hello everyone, We are looking forward to the GA 1 Social on Sept. 19th and were wondering if anyone could recommend a hotel. Thanks, Dena Mom to Kaitlyn 8...
1843
Posey, Lacy
lposey@...
Jul 29, 2008 1:17 pm
The doctors began taking Cheyenne off Phenobarb in January. Its been a very slow 8 month process to do that and move her to Lamictal instead. THe doctor says...
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Tracy Jamison
superbusymom3
Jul 28, 2008 2:26 pm
when Destiny was 2 1/2 she had 5 gran mal seizures when we got home from the hospital she would have these episodes that would vary in length she would tighten...
1841
Arnold Corrina
aspentre
Jul 28, 2008 12:58 pm
My son went in for an EEG and I pushed the button on the strange staring and eye movements. My sons neurologist said it was a tik not a seizure but that...
1840
Wanda Shelton
joshcrazy04
Jul 28, 2008 6:29 am
SO Shelton went in for a VEEG, due to the fact that his therapist thought he was having many large seizures and even more little ones. The neurologist (who I...
1839
Kathy Stagni
oaanews
Jul 16, 2008 4:01 pm
Children’s Hospital of Pittsburgh of UPMC Sponsors National Conference for Families of Children With Rare Genetic Disorders PITTSBURGH – July 16,...
