Guest guest Posted May 4, 1998 Report Share Posted May 4, 1998 The Weaver My life is but a weaving Between my Lord and me. I cannot choose the colors He works so steadily. Oft' times He weaves in sorrow And I, in foolish pride, Forget He sees the upper And I, the underside. The dark threads are as needed In the Weaver's skillful hand, As the threads of gold and silver In the pattern He has planned. Not til the loom is silent And the shuttles cease to fly, Will God unroll the canvas And explain the reason why. Kristone God hath not promised- Skies always blue, Flower-strewn pathways All our lives through; God hath not promised Sun without rain, Joy without sorrow, Peace without pain. But God hath promised Strength for the day, Rest for the labor, Light for the way. Grace for the trials, Help from above, Unfailing sympathy, Undying love. unknown author My son Jonah >> >> >> >From: shelley_lev@... >> > >> >Hello everyone, I hope you remember me, some of you who I have >>corresponded >>with have really been supportive during a tough time for us.I haven't >>posted >>for a while as Jonah has been quite ill.I am so frustrated and angry I >>don't >>even know what to do anymore.You may remember he was in hospital 2 months >>ago to get established on home parenteral nutrition, well the GI doctor I >>have been having trouble with decided to take him off the tpn and his iv >>carnitine after only 4 weeks.My son's pediatrician and neurometabolic docs >>disagreed but since Jonah was under the GI service at the time he had the >>final say.We all explained to this doc that Jonah has cyclic diarhhea and >>vomiting and goes down very quick.He had gained 4 pounds on the tpn and the >>carnitine had really improved his strength and health.TPN doesn't come >>without it's risks,infection and liver damage being the 2 worst, but the >>alternative for Jonah is starvation and dehydration.So anyway, Jonah came >>home and over the following two weeks he lost more and more weight and >>fluids until finally his metabolic doc said come back, we need to put him >>back on.I was so relieved!This was last friday.On Sunday his vomiting >>increased five fold and he went into a seizure and aspirated the vomit.I >>rushed him to emerg and he was taken care of and was actually doing okay by >>6pm.We waited another 6 hours to go to a room just for overnight >>observation >>and by 1 am he looked odd so the nurse called our pediatrician and he cam >>in >>to start an iv.When he attepted to do it Jonah didn't even respond, he had >>gone into a coma state.They rushed off blood work and it came back his >>electrolytes were very unbalanced and he had a sodium of 174.`176 is >>incompatible with life.They start flushing him with fluids and his rouses >>enough to start seizing and he had a 1.5 hour seizure.He just kept >>convulsing from there.They arranged for transfer to a bigger centre and >>intubated him.I was told he probably wasn't going to make it.I was reeling, >>I couldn't believe it.What had gone wrong?!!!He is now severly >>braindamaged, >>blind, seizing and in a great deal of pain.Just a week ago he was smiling, >>talking sitting up, eating and breaking in his first tooth.I was told that >>he dehydrated and lost a lot of free water from his system causing his >>sodium level to go up,(it eventually went to 198),and that the sodium >>wasn't >>processed through properly because of his mito disorder.If he had stayed on >>tpn this would have not happened, so I am wanting to really hurt that gi >>doc.He will not want to run into me right now.Has anyone else experienced >>or >>heard of severe electrolyte problems in mito children, we need some more >>light shed on this.I have lost my son due to something that could have been >>prevented.I just feel so helpless and I don't know if I can handle this >>one.Jonah has always made it easier for people around him to accept his >>illness, because he was so happy, vibrant, social and bright little guy, >>and >>now that is gone and what do we do? Thanks for listening. >>,mom to an angel. >> > >> >------------------------------------------------------------------------ >> >Has ONElist changed your life? >> >http://www.ONElist.com >> >Visit our homepage and share with us your experiences at ONElist of the >>Week! >> >------------------------------------------------------------------------ >> >Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. >> > >> >> >>------------------------------------------------------------------------ >>G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED >>Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm >>1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! >> http://www.onelist.com/ad/shoptheglobe11 >>------------------------------------------------------------------------ >>Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Have you visited the new ONElist home page lately? >http://www.ONElist.com >ONElist: The Leading e-mail list and community service on the Internet! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 You have made it possible for me to leave the house today.Thanks. XO > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Poems for & Jonah >Date: Sun, 3 May 1998 22:38:06 -0700 > > > > The Weaver >My life is but a weaving >Between my Lord and me. >I cannot choose the colors >He works so steadily. > >Oft' times He weaves in sorrow >And I, in foolish pride, >Forget He sees the upper >And I, the underside. > >The dark threads are as needed >In the Weaver's skillful hand, >As the threads of gold and silver >In the pattern He has planned. > >Not til the loom is silent >And the shuttles cease to fly, >Will God unroll the canvas >And explain the reason why. > Kristone > >God hath not promised- >Skies always blue, >Flower-strewn pathways >All our lives through; >God hath not promised >Sun without rain, >Joy without sorrow, >Peace without pain. > >But God hath promised >Strength for the day, >Rest for the labor, >Light for the way. >Grace for the trials, >Help from above, >Unfailing sympathy, >Undying love. > >unknown author > > > My son Jonah > >> > >> > >> >From: shelley_lev@... > >> > > >> >Hello everyone, I hope you remember me, some of you who I have > >>corresponded > >>with have really been supportive during a tough time for us.I haven't > >>posted > >>for a while as Jonah has been quite ill.I am so frustrated and angry I > >>don't > >>even know what to do anymore.You may remember he was in hospital 2 >months > >>ago to get established on home parenteral nutrition, well the GI doctor >I > >>have been having trouble with decided to take him off the tpn and his iv > >>carnitine after only 4 weeks.My son's pediatrician and neurometabolic >docs > >>disagreed but since Jonah was under the GI service at the time he had >the > >>final say.We all explained to this doc that Jonah has cyclic diarhhea >and > >>vomiting and goes down very quick.He had gained 4 pounds on the tpn and >the > >>carnitine had really improved his strength and health.TPN doesn't come > >>without it's risks,infection and liver damage being the 2 worst, but the > >>alternative for Jonah is starvation and dehydration.So anyway, Jonah >came > >>home and over the following two weeks he lost more and more weight and > >>fluids until finally his metabolic doc said come back, we need to put >him > >>back on.I was so relieved!This was last friday.On Sunday his vomiting > >>increased five fold and he went into a seizure and aspirated the vomit.I > >>rushed him to emerg and he was taken care of and was actually doing okay >by > >>6pm.We waited another 6 hours to go to a room just for overnight > >>observation > >>and by 1 am he looked odd so the nurse called our pediatrician and he >cam > >>in > >>to start an iv.When he attepted to do it Jonah didn't even respond, he >had > >>gone into a coma state.They rushed off blood work and it came back his > >>electrolytes were very unbalanced and he had a sodium of 174.`176 is > >>incompatible with life.They start flushing him with fluids and his >rouses > >>enough to start seizing and he had a 1.5 hour seizure.He just kept > >>convulsing from there.They arranged for transfer to a bigger centre and > >>intubated him.I was told he probably wasn't going to make it.I was >reeling, > >>I couldn't believe it.What had gone wrong?!!!He is now severly > >>braindamaged, > >>blind, seizing and in a great deal of pain.Just a week ago he was >smiling, > >>talking sitting up, eating and breaking in his first tooth.I was told >that > >>he dehydrated and lost a lot of free water from his system causing his > >>sodium level to go up,(it eventually went to 198),and that the sodium > >>wasn't > >>processed through properly because of his mito disorder.If he had stayed >on > >>tpn this would have not happened, so I am wanting to really hurt that gi > >>doc.He will not want to run into me right now.Has anyone else >experienced > >>or > >>heard of severe electrolyte problems in mito children, we need some more > >>light shed on this.I have lost my son due to something that could have >been > >>prevented.I just feel so helpless and I don't know if I can handle this > >>one.Jonah has always made it easier for people around him to accept his > >>illness, because he was so happy, vibrant, social and bright little guy, > >>and > >>now that is gone and what do we do? Thanks for listening. > >>,mom to an angel. > >> > > >> > >------------------------------------------------------------------------ > >> >Has ONElist changed your life? > >> >http://www.ONElist.com > >> >Visit our homepage and share with us your experiences at ONElist of >the > >>Week! > >> > >------------------------------------------------------------------------ > >> >Brought to you by www.imdn.org - an on-line support group for those > >>affected by mitochondrial disease. > >> > > >> > >> > >>------------------------------------------------------------------------ > >>G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED > >>Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm > >>1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! > >> http://www.onelist.com/ad/shoptheglobe11 > >>------------------------------------------------------------------------ > >>Brought to you by www.imdn.org - an on-line support group for those > >>affected by mitochondrial disease. > > > > > >------------------------------------------------------------------------ > >Have you visited the new ONElist home page lately? > >http://www.ONElist.com > >ONElist: The Leading e-mail list and community service on the Internet! > >------------------------------------------------------------------------ > >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > > > >------------------------------------------------------------------------ >ONElist: bringing the world together. >http://www.onelist.com >Join today! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. 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