Julie, My name is pat, age 53. I am a manifesting carrier with x-linked myotubular myopathy. My daughter was also a manifesting carrier with xmtm. She was 32....
1263
redscootee@...
mrsbnmd
Sep 9, 2004 8:04 am
Happy Birthday Jack! Have a great day! Hope you get everything you dream about. take care pat...
1264
ANN MILLER
dm4462
Sep 9, 2004 5:04 pm
HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY DEAR JACK HAPPY BIRTHDAY TO YOU HAVE A GREAT DAY ! LOVE, KYLE AND DARLENE ... Yahoo! Groups Links ...
1265
Shannon
smashintwo66
Sep 9, 2004 8:52 pm
I have been reading all the latest posts and am glad to see a few new faces (well, I guess that we can't actually "see" each other!). For those who are new,...
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Darlene
dm4462
Sep 10, 2004 2:12 am
Hi everyone, As you may know, Kyle goes to school one day a week now. We got our first news letter today. I thought this was cute and wanted to share with...
1267
Shannon
smashintwo66
Sep 10, 2004 3:40 pm
Hi everyone...a quick note. Javad is back in the hospital, hopefully for ust a few days. He has had an ear infection and upper respiratory for a few weeks. On...
1268
Shannon
smashintwo66
Sep 10, 2004 3:47 pm
Happy Birthday Benjamin... You are such a big, beautiful boy! Shannon...
1269
ANN MILLER
dm4462
Sep 10, 2004 5:28 pm
Hi Shannon, I hope Javad gets better soon. Take care, Darlene ... From: Shannon<mailto:smashintwo66@...> To:...
1270
redscootee@...
mrsbnmd
Sep 10, 2004 7:34 pm
Shannon, (((((Hugs & Prayers))))) for Javad and` your family that he is quickly on the mend and back home soon. Let us know. take care pat...
1271
redscootee@...
mrsbnmd
Sep 12, 2004 4:18 pm
Don't know if anyone would benefit from this site but thought I would pass it on. It is a way to give and get things you need for free in your own home towns. ...
1272
Wright, Janice (J)
matthewsmomm...
Sep 13, 2004 6:32 am
FYI ... From: OUR-KIDS [mailto:our-kids@...] On Behalf Of PremieINFO@... Sent: 05 September 2004 10:20 PM To:...
1273
Wright, Janice (J)
matthewsmomm...
Sep 13, 2004 6:53 am
Happy Birthday Jack!!!!!!!!!!!!!!! Hope you had a smashing time! Janice ... From: Jessica Juckers [mailto:jessmark@...] Sent: 09 September 2004...
1274
Jessica Juckers
nyte_faewyn
Sep 13, 2004 8:08 am
Hi Janice, Thanks for the Birthdays wishes ... he is 2! Had a bit of a emotional day, all these feelings from the past 2 years manifested. I dont know why,...
1275
Jessica Juckers
nyte_faewyn
Sep 13, 2004 8:11 am
Hi Amanda, I hope everything is OK.. I know there has been a few tornados your way lately. Please be safe and well Jess...
1276
Wright, Janice (J)
matthewsmomm...
Sep 13, 2004 10:28 am
Hi Guys, I subscribed to the group below before Matthew died. They have a lot of good suggestions, and some of the parents have innovative ways of coping with...
1277
ANN MILLER
dm4462
Sep 13, 2004 11:28 am
HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY TO YOU HAPPY BIRTHDAY BENJAMIN HAPPY BIRTHDAY TO YOU HAVE A GREAT DAY! LOVE, KYLE AND DARLENE ... From: Wright, Janice...
1278
Wright, Janice (J)
matthewsmomm...
Sep 14, 2004 11:01 am
Al and I are back from a week away at the sea. We decided to put Matthew's ashes in the ocean, where Al's folks have a holiday flat. It was really special. We...
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Lill Tove
magica2204
Sep 14, 2004 11:03 am
Thank you Jessica! Remi was suposed to do nissen this week but it has been canselled. We shall meet with his doctor tomorrow. I hope that we can bring him home...
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Lill Tove
magica2204
Sep 14, 2004 11:03 am
I'm wondering if anyone of your boys sometimes got 'plugs' of secret in their lungs? Remi gets it now and then. I hoped it would stop when he growed older but...
1281
Lill Tove
magica2204
Sep 14, 2004 11:03 am
Thank you Pat! How was your son as a baby? How is he today??? I didn't know that there was any adult with mtmx. Lill Tove ... From: redscootee@... To:...
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Lill Tove
magica2204
Sep 14, 2004 11:41 am
Hi Darlene! The doctors have now decided not to do Nissen. They are afraid he is to weak. I'm not agree. They will test out another thing which they haven't...
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ANN MILLER
dm4462
Sep 14, 2004 12:15 pm
Hi Lill, Kyle gets the plugs. Back in March through July he had what the Doctor would call desatting, he would be fine one minute then his oxygen level would...
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ANN MILLER
dm4462
Sep 14, 2004 12:23 pm
Hi Lill, I hope everything works out. Why do they think he is to weak? Remi's birthday is October 3rd. My youngest daughter's birthday is that day also. We...
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ANN MILLER
dm4462
Sep 14, 2004 12:52 pm
Hi AllHi Janice and Al, I think you two are on the right track. Remembering Matthew with a garden is great. He loved to look at the flowers. The memory box...
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Lill Tove
magica2204
Sep 14, 2004 12:59 pm
Hi Darlene. It's exactly the same way with Remi. I understand that he have to live with it for some more years. At the same time I'm glad that it's something...
1287
Wright, Janice (J)
matthewsmomm...
Sep 14, 2004 1:11 pm
Hi Lill, Matthew often got used to get plugs and desaturate. He was never strong enough to cough up the secretions. We eventually got a closed suction catheta...
1288
redscootee@...
mrsbnmd
Sep 14, 2004 5:22 pm
FYI take care pat <a href="http://www.healthgrades.com/webtv/">Health Grade ~ Health Care Report Cards</a> http://www.healthgrades.com/webtv/...
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Shannon
smashintwo66
Sep 14, 2004 9:11 pm
Lill, Javad recently had a nissen done iwhen he was in the hospital. do they do the nissen arthroscopically or do they have to make a large cut in his abdomen?...
1290
Shannon
smashintwo66
Sep 14, 2004 9:13 pm
Janice and Alistar, Matthew's garden sounds lovely. What a gift to be able to go outside and be with him all the time. I agree that people don't understand...
1291
redscootee@...
mrsbnmd
Sep 15, 2004 6:29 am
This was not a good link. See below email for a good site. take care pat Pat, I am more than a little wary of this HealthGrades site after looking at it ...
