Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 07/17/2000 3:22:33 PM Eastern Daylight Time, Hadjab@... writes: << Anyway, I am having my MGB in 2 weeks, and I will have the chance to be thin and healthy! Good luck to Margie and everyone else in line for MGB.. Hope to meet lots of you soon! Deb in IL >> Deb, Thanks for your understanding letter. It really is so cool to have a support group like this! I just can hardly believe it. I thought you were sneakin in early? You might even get on a guerney early?/ hmmmmm Dr.R is online ya know!! I appreciate your concern and I am so happy you got a date! We'll be on the other side in no time huh???? Yipppeeeeee!! I Can't WAITTTTTTTT!! xoxoxoxox Margie Sc JULY 26th!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 07/17/2000 4:00:12 PM Eastern Daylight Time, Hadjab@... writes: << What time is the meeting on the 29th? Maybe we could leave early Friday morning and get there around noon on Saturday.. or would that be too late? Deb >> Deb, You know what? I don't know where or what time? Now isn't that a good one?? But I know there is one. I think it is at 's? But don't quote me pleaseeeee! Just get here!!! It is on the 29th!! Hugs Xoxoxox Margie Sc July 26th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 , Well I hope it work! Good luck I know how hard it can be! They grow up to fast as it is. Enjoy those quiet times with them. I do! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Thanks for the help. I will keep trying but otherwise I will definitely let this group know about it on a regular basis. My daughter has already sent a message. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Mitokidsandsibs (new e-mail group for kids/teens!) > Darla > > If you figure that out, let me know. I don't think there is a way...maybe > you could just send out a monthly email to this list and have them email > you > privately if their child wants to be invvolved and then you will only have > to > send invites once a month or so. > > deb...mom to three great kids and wife to one amazing guy! > http://www.lifeofloveproject.org/ > http://www.heartliftersgallery.com/ > Crazy Lizzies!! PURSES! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 CaringBridge.org - kirklandk I cut and paste the update too... Kirkland Kilbride Welcome to Kirkland's Web Page. It has been provided to keep people updated about his progress. Journal Monday, November 29, 2004 1:18 PM CST Hello everyone,I finally have a minute to update you on Kirkland's progress. Thank you so much for all the e-mails and well wishes. It really is overwhelming to think of all the friends and family who care for us. It means a lot.Kirkland's done well over the weekend. Yesterday's chest x-ray showed that the recent pneumonia that had appeared in his left lobes is all gone. His right upper lobe looks the same as it did the last time in back in May. It's partially collapsed which is a result of the cronic lung problems that now characterize Kirk's disease. We'll live with that and cope the best we can.We're already aiming to go home possibly as early as tomorrow! Incredible eh? Keep those prayers coming! The only problem is that Evan now has the stomach flu and Carson the 'runs'. It might not be such a good idea to take him into that scenario right now so for now, we're observing and allowing him more IV antibiotics.Sorry I haven't been able to respond personally to many of you and haven't been on the phone much. I've been pretty busy nursing Kirk and constantly changing his positions to keep him coughing. Haven't stepped outside since last Wednesday so I'm getting a little ansy!The seizures are decreasing as Kirk's health improves. We've been playing a bit with his latest med - Gabapentin (Neurontin). It seems to really be helping so we want to fine tune it and give him as much as he's able to tolerate.Meanwhile back at home, it appears the other two boys are taking it easy. Nanny and Dad have put the tree up and are working hard to keep the spirits high. Carson slept at Mason's new house on Saturday and Evan had sleep over at our place. That made a gloomy weekend a bit more exciting. They're also allowed to play the x-box and computer games during the week (which is not the norm). This seems to help distract them.Kirk and I have had plenty of visitors and he now has a giant "Sponge Bob" hanging from the ceiling -compliments of cousin Anita! It seems to keep him interested and is much nicer than ceiling tiles. As usual, the care here has been fantastic. Kirk's docs are around alot and Dr. Feigenbaum's been in close touch from Sick Kids. The paeds nurses really are the best. There's always plenty of loves for Kirk and 'gabs' for Mom. I'll go now. Time is pressing. I promise to be in touch as soon as possible.Your concern means so much to all of us,love deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 What is her web page? I think I have been there before but thought I would try to look it up again. If I hear anything, I will let you know. Thanks for the reply. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Deb > no I haven't and I have been checking her page every day but haven't seen > an > udpate (altho I haven't checked today). I don't have international > calling on > my phone or I would call the number on her CB page. let me knwo if you > hear > from her. > > deb...mom to three great kids and wife to one amazing guy! > http://www.lifeofloveproject.org/ > http://www.debwells.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Thanks Deb. I guess I did read the latest update she wrote recently after all. I forgot she updated the group by using this site. Thanks for the link. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Deb > > CaringBridge.org - kirklandk > > I cut and paste the update too... > > Kirkland Kilbride > > Welcome to Kirkland's Web Page. It has been provided to keep people > updated > about his progress. > Journal > Monday, November 29, 2004 1:18 PM CST > Hello everyone, > > I finally have a minute to update you on Kirkland's progress. Thank you so > much for all the e-mails and well wishes. It really is overwhelming to > think of > all the friends and family who care for us. It means a lot. > > Kirkland's done well over the weekend. Yesterday's chest > x-ray showed that the recent pneumonia that had appeared in his left lobes > is > all gone. His right upper lobe looks the same as it did the last time in > back > in May. It's partially collapsed which is a result of the cronic lung > problems that now characterize Kirk's disease. We'll live with that and > cope the best > we can. > > We're already aiming to go home possibly as early as tomorrow! Incredible > eh? > Keep those prayers coming! The only problem is that Evan now has the > stomach > flu and Carson the 'runs'. It might not be such a good idea to take him > into > that scenario right now so for now, we're observing and allowing him more > IV > antibiotics. > > Sorry I haven't been able to respond personally to many of you and haven't > been on the phone much. I've been pretty busy nursing Kirk and constantly > changing his positions to keep him coughing. Haven't stepped outside since > last > Wednesday so I'm getting a little ansy! > > The seizures are decreasing as Kirk's health improves. We've been playing > a > bit with his latest med - Gabapentin (Neurontin). It seems to really be > helping > so we want to fine tune it and give him as much as he's able to tolerate. > > Meanwhile back at home, it appears the other two boys are taking it easy. > Nanny and Dad have put the tree up and are working hard to keep the > spirits high. > Carson slept at Mason's new house on Saturday and Evan had sleep > over > at our place. That made a gloomy weekend a bit more exciting. They're also > allowed to play the x-box and computer games during the week (which is not > the > norm). This seems to help distract them. > > Kirk and I have had plenty of visitors and he now has a giant " Sponge Bob " > hanging from the ceiling -compliments of cousin Anita! It seems to keep > him > interested and is much nicer than ceiling tiles. > > As usual, the care here has been fantastic. Kirk's docs are around alot > and > Dr. Feigenbaum's been in close touch from Sick Kids. The paeds nurses > really > are the best. There's always plenty of loves for Kirk and 'gabs' for Mom. > > I'll go now. Time is pressing. I promise to be in touch as soon as > possible. > Your concern means so much to all of us, > love > > > > > deb...mom to three great kids and wife to one amazing guy! > http://www.lifeofloveproject.org/ > http://www.debwells.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2004 Report Share Posted December 11, 2004 Monday thru friday next week from 8a-2p would be a good time to call during the day. We are in CST...in Memphis. Really just try when you can adn if I am available then we will go for it! I can probably talk...this is important! deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.debwells.com/ Quote Link to comment Share on other sites More sharing options...
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