Re: Jennie from Darla

[Guest guest]

Jennie, Tell your little guy Happy 2nd Birthday for me ok. I was glad to hear you got some rest the other night. It was kind of rough over here, but got some too. We are getting packed for our trip to Mayo Clinic tomorrow and have tons on my mind. It always seems like we are packing for a month rather than for a couple of days with all the machines and meds we need for Asenath and Zipporrah. I am sure you understand that. I am sure every day with your little guy is a precious time even though stressful. When you know what the doctors think and that they are amazed our kids are still around, it really gives us a clear picture of how precious our kids are. When we put Asenath on steroids last fall the docs didn't think they would stop the progression of her vasculitis and yet at this point she seems to be stablizing. She still has at least 4 narrow arteries that they can see that can cause strokes or anerisms at any time which could be devastating, and the docs say she will always have arteries like that of a 60-80 year old, but we are so blessed that she is still with us. Even before we knew what was wrong with her, she was so much worse metabolically and was so skinny and frail with migraines almost constantly. Now, she has migraines but not nearly as bad, and she is overall pretty stable metabolically. Viruses still cause metabolic strokes regularly, but they tend to be smaller and much can be regained. It may seem strange to say it, but we feel quite blessed. Maybe not blessed with healthy kids, but blessed to be allowed to care for God's precious ones that suffer. I am amazed He trusted us with these frail ones and hope I can be the best mom to them I can possibly be. I would absolutely love a cure, and yet, realistically know it is not going to probably happen in my children's lives. So, with that knowledge, I try to be as positive as possible, even though at times I am afraid and worried. We are all human. We are all mothers (and fathers) who love our kids more than our own lives, and would give our bodies to replace with theirs; taking their pain and trials in a second. I just hate it to know you are having such a hard time and that Logan is so frail. I will keep you and he in my prayers. I will try to check for e-mails while at Mayo if I am at the Mc House, but if they are full I may be gone until Friday. Please try to take care of yourself. I am glad I have helped you some. Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Issac, Tirzah, Kezia, and Marquis. Re: Mayby seisure? Need HELP! shannon: the dr.s are just waiting to put the vegus nerve stimulator in logan. we have to get his hemoglobin up. they alsoraised his depacote to 3 tabs in the a.m.and 2 tabs in the evening . on top of that he gets his diastan if the seizure is ove r5 min or more than three in an hour. which like your daughter it puts him to sleep. the dr.s when i called them say there is nothing i am doing wrong and the wouldn't be able to do anything that i am already doing. he sleeps with his puse ox on and i have to keep track of his meds and b.p. because on top of that he has hpertension and tons of other stuff going on. i think i get frustated with this disease. its like tomorrow is his 2nd birthday and teh dr.s didn't think he would make it. i am overjoyed and blessed that God has let him stay here this long but in the back of my mind i wonder how much longer we have him , if one of these days he wil have a seizure that he doesn't come out of . but now I know i have people out here who have or are going through the same thing as we are, it was a blessing honeybear was online that night and it has been a blessing that i have met you shannon, you guys are my life line and have given me strength when i didn't think i had any left.these past couple of weeks have really tried my patience with this disease sometimes i want to scream and i am not the one who has to live with it in my body. sometimes i wish i could take his pain away and let him be a normal 2 yr old . I don't know if you ever felt that way? but then you look around and see these kiddos with cancer and mito, and other diseases and they give me inspiration . they have the strength of innocence and then you meet parents like you who are strong and wise and full of love. you guys give me inspiration and i thankyou and honeybear. love your friend jenaddwillbebad@... wrote: jen i agree with honeybear... its time to go to the hospital they can control it better than we can ..i do know brandy had to be put in what they call a coma where they put him to sleep for 24 or 48 hours to calm the sez.. it is the same med. as phinbarbitol i cant spell it but it is in the same family as it ... really though you need to get them under control ... brandys was not controlable so she had to stay asleep if she was to come to she would sez to death .. so they told me the best thing is to keep her asleep.. gosh i wish i could be there so you can at least try and get some sleep i know how you feel i was up for days with brandy . it like you have so much enery when they are sick like this .. i will keep you in my prayers god bless you both ... let me know what is going on love your friend shannon Please contact mito-owner with any problems or questions. 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[Guest guest]

darla : thank you i hope you guys have a safe trip . my thoughts and prayers are with you. you are such a special friend and we have the greatest kids !!!!!!!!!!!!!! you have my # if you need to talk or need anything and can't get on the computer call me collect . we luv you guys tell your little ones they have got prayers all around them lots of luck. jenni mom of logan austin ashley and brandy.Darla Klein wrote:

Jennie,

Tell your little guy Happy 2nd Birthday for me ok.

I was glad to hear you got some rest the other night. It was kind of rough over here, but got some too. We are getting packed for our trip to Mayo Clinic tomorrow and have tons on my mind. It always seems like we are packing for a month rather than for a couple of days with all the machines and meds we need for Asenath and Zipporrah. I am sure you understand that.

I am sure every day with your little guy is a precious time even though stressful. When you know what the doctors think and that they are amazed our kids are still around, it really gives us a clear picture of how precious our kids are. When we put Asenath on steroids last fall the docs didn't think they would stop the progression of her vasculitis and yet at this point she seems to be stablizing. She still has at least 4 narrow arteries that they can see that can cause strokes or anerisms at any time which could be devastating, and the docs say she will always have arteries like that of a 60-80 year old, but we are so blessed that she is still with us. Even before we knew what was wrong with her, she was so much worse metabolically and was so skinny and frail with migraines almost constantly. Now, she has migraines but not nearly as bad, and she is overall pretty stable metabolically. Viruses still cause

metabolic strokes regularly, but they tend to be smaller and much can be regained. It may seem strange to say it, but we feel quite blessed. Maybe not blessed with healthy kids, but blessed to be allowed to care for God's precious ones that suffer. I am amazed He trusted us with these frail ones and hope I can be the best mom to them I can possibly be. I would absolutely lo! ve a cur e, and yet, realistically know it is not going to probably happen in my children's lives. So, with that knowledge, I try to be as positive as possible, even though at times I am afraid and worried. We are all human. We are all mothers (and fathers) who love our kids more than our own lives, and would give our bodies to replace with theirs; taking their pain and trials in a second. I just hate it to know you are having such a hard time and that Logan is so frail. I will keep you and he in my prayers.

I will try to check for e-mails while at Mayo if I am at the Mc House, but if they are full I may be gone until Friday. Please try to take care of yourself. I am glad I have helped you some.

Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Issac, Tirzah, Kezia, and Marquis.

Re: Mayby seisure? Need HELP!

shannon: the dr.s are just waiting to put the vegus nerve stimulator in logan. we have to get his hemoglobin up. they alsoraised his depacote to 3 tabs in the a.m.and 2 tabs in the evening . on top of that he gets his diastan if the seizure is ove r5 min or more than three in an hour. which like your daughter it puts him to sleep. the dr.s when i called them say there is nothing i am doing wrong and the wouldn't be able to do anything that i am already doing. he sleeps with ! his puse ox on and i have to keep track of his meds and b.p. because on top of that he has hpertension and tons of other stuff going on. i think i get frustated with this disease. its like tomorrow is his 2nd birthday and teh dr.s didn't think he would make it. i am overjoyed and blessed that God has let him stay here this long but in the back of my mind i wonder how much longer we have him , if one of these days he wil have a seizure that he doesn't come out of . but now I know i have people out here

who have or are going through the same thing as we are, it was a blessing honeybear was online that night and it has been a blessing that i have met you shannon, you guys are my life line and have given me strength when i didn't think i had any left.these past couple of weeks have really tried my patience with this disease sometimes i want to scream and i am not the one who has to live with it in my body. sometimes i wish i could take his pain away and let him be a normal 2 yr old . I don't know if you ever felt that way? but then you look around and see these kiddos with cancer and mito, and other diseases and they give me inspiration . they have the strength of innocence and then you meet parents like you who are strong and wise and full of love. you guys give me inspiration and i thankyou and honeybear. love your friend jenaddwillbebad@... wrote: jen i agree with honeybear... its time to go to the hospital they can control it better than we can ..i do know brandy had to be put in what they call a coma where they put him to sleep for 24 or 48 hours to calm the sez.. it is the same med. as phinbarbitol i cant spell it but it is in the same family as it ... really though you need to get them under control ... brandys was not controlable so she had to stay asleep if she was to come to she would se! z to dea th .. so they told me the best thing is to keep her asleep.. gosh i wish i could be there so you can at least try and get some sleep i know how you feel i was up for days with brandy . it like you have so much enery when they are sick like this .. i will keep you in my prayers god bless you both ... let me know what is going on love your

friend shannon Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com