Re: (from Darla)

[Guest guest]

I wish I could have heard you say you were feeling better, but you make sure to take care of yourself. It is so hard to get rest during the holidays and to be getting over a nasty flu bug is the worst. I hope your daughter is starting to do better as well. I know how hard it is to wonder if yet another child may be affected by Mito and I often wonder/fear that some of my other children may be affected as well. I don't worry really for the present time but more for their future. We plan to mention Luke's issues to our neurologist and geneticist next time we are at Mayo which will be in February sometime. If they want to see him, then we will consider it at that time He seems overall pretty healthy otherwise so we don't think there is any need of rushing an appointment. I did mention the issues to our pediatrician and she was concerned and wanted him to be seen by the Mayo docs so I will definitely follow up. I hope you had a wonderful holiday and enjoyed time together with the kids. It has been a little stressful around here and I have had to give myself a boost to be cheerful. I have really been struggling with some reality issues to do with the death of one Mito child after another because it is such a real possibility for Asenath now. Metabolically she has pretty stable recently, but the vasculitis is so horrible. But, I keep trying to be cheerful and enjoy each day with Asenath rather than morning for what "could" happen in the future and miss out on the "now." We had a good time at my parents house in Northeastern Iowa. My parents bought my husband and I a SCANNER for Christmas, can you believe it? I am so excited to be able to use it. As soon as I find time to connect it, I will post some photos of our family to the group. I had looked at scanners just a few days ago and gave up the idea of having one for a while because I couldn't find one I could afford. So this is such a surprise!! You take care and don't worry about rushing the "whatever" it is you have for me. Your too sweet! Merry Christmas! Darla: mommy to Asenath Re: tingling/numb face-Questions Darla,No great insights from me but I just had to comment as I've had somestrange numbness lately It's a new thing with me, but I am quite rundown from a nasty bout with the influenza bug. At first I thought that myneck must have been "out of whack" from laying in bed but that isn't it,as the numbness has dissipated greatly but not gone away entirely. Yourcomment about yours being related to being run down, sure resonated withme and that was what I was attributing my fuzzy fingers to also. Ada & I are not perking up the way one would hope from the flu. Both ofus have really been out of commission since the 6th of December. I am sobummed about it too. I had so hoped for Ada to have a good winter-meaningnot ill for ever like last year and it just doesn't seemed meant to be. Ifear I need to confront some of those dark fears again. Dang! Still notsure how I will proceed...., Red on the other had, never did get the flu(he takes after his father in the health department) and we still arewatching for chickenpox. Could it be that he will take a miss on themalso?!As for your young Luke, I too would wonder about what else he has notshared. Seems kids are real good about getting use to the way certainthings are/or feel, and reach a point where they don't even realize thatit's not normal. I think I would try some exploratory conversations-in arelaxed fashion- as I'm sure being the young man in the family hewouldn't want to burden you in any way. I would guess that he feels thatyou have your hands more than full with worry for the new babe andAsenath.So as mentioned, I've been laid up a bit and of course have not finishedmy holiday shopping. Oh well! I had planned on sending you something forthe holidays, looks like it will be more like a new years something orother. Take care of yourself dear Darla. Rest, and enjoy your very bountifulfamily. I am sure with all those kids there is joy to spare in your household Savor your moments with sweet Asenath & give her a hug from me.Blessings, LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks for the note . It really has been frustrating and some what a panicking week for me. I too read the E-medicine articles and began to panic. I also remember how several of the children that have had short lives have battled high lactic acid issues and how major organs can choose to shut down due to it. That plus this mysterious virus is almost too much added onto already overwhelming health issues. We have wondered if whooping cough might be the culprit as the symptoms are so similar but REALLY hope it is not. Luke is just beginning to improve and hasn't coughed as much and is breathing easier he says. (After 1 month!) I just can't imagine Asenath or Porrah having this long of an illness. I worry how they will be able to spit out all the phlegm buildup and how they will react to not being able to breath. Steroids suppress the immune system, so if my healthy kids are having such a difficult time, how can Asenath actually get through it?! Or Porrah, we do not know what all is going on in her and being so young; to deal with this, especially since she already has reflux issues and gagging! That is what makes me start to panic. Not knowing how they will handle this illness if they get it. Asenath already has begun it and swallows lots after coughing and has an ear infection. She is starting antibiotics tonight and hopefully it will help her. I just have a lot of fear right now. You don't know how grateful I am to have this group to talk with. I know you all understand. With Porrah's eating issues, she is doing a little better but still is battling the problems. We have a GI appointment on the 2nd and hopefully she will do ok until then. She is doing better today than the past two days following the anesthesia thankfully! Darla: mommy to Asenath, Zipporrah, and the gang Re: -stress issue Darla,I printed all of your emails and thought I would respond to all three in this one.Luke- Yes pursue, when you have time, giving him the opportunity to speak with some one outside of the family. It make take more than one visit for him to feel comfortable enough with that person to really open up. I'm so sorry that they are still ill with the lingering unknown virus. How frustrating and scary to have that lingering in your home. Ada, also had a difficult time kicking it. I supplemented her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, rest, rest. As far as Asenath & Porrah catching it, oh my, let's hope......, watch carefully. IV's really helped pull Lily back from the brink of the illness/seizure cycle a few times. How is Zipporrah doing with the nursing/eating? did you get any advice/help from whiteman when you spoke with him?I'm sorry Dr whiteman reported back to you with the news that he did.Thankful that the MRI etc was normal. Lily had high lactic acid. I remember reading an E Medicine article on Lactic acidosis and pretty much panicking! That was near the beginning of the journey, we become "use to " so many things that one shouldn't. Anyways, Lily's levels were quite high off and on, more high than low. We never did have it "treated" per se. Hopefully Whiteman will take a more pro-active course with her, since he is the expert. My thoughts are with you and yours, Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks for the note . It really has been frustrating and some what a panicking week for me. I too read the E-medicine articles and began to panic. I also remember how several of the children that have had short lives have battled high lactic acid issues and how major organs can choose to shut down due to it. That plus this mysterious virus is almost too much added onto already overwhelming health issues. We have wondered if whooping cough might be the culprit as the symptoms are so similar but REALLY hope it is not. Luke is just beginning to improve and hasn't coughed as much and is breathing easier he says. (After 1 month!) I just can't imagine Asenath or Porrah having this long of an illness. I worry how they will be able to spit out all the phlegm buildup and how they will react to not being able to breath. Steroids suppress the immune system, so if my healthy kids are having such a difficult time, how can Asenath actually get through it?! Or Porrah, we do not know what all is going on in her and being so young; to deal with this, especially since she already has reflux issues and gagging! That is what makes me start to panic. Not knowing how they will handle this illness if they get it. Asenath already has begun it and swallows lots after coughing and has an ear infection. She is starting antibiotics tonight and hopefully it will help her. I just have a lot of fear right now. You don't know how grateful I am to have this group to talk with. I know you all understand. With Porrah's eating issues, she is doing a little better but still is battling the problems. We have a GI appointment on the 2nd and hopefully she will do ok until then. She is doing better today than the past two days following the anesthesia thankfully! Darla: mommy to Asenath, Zipporrah, and the gang Re: -stress issue Darla,I printed all of your emails and thought I would respond to all three in this one.Luke- Yes pursue, when you have time, giving him the opportunity to speak with some one outside of the family. It make take more than one visit for him to feel comfortable enough with that person to really open up. I'm so sorry that they are still ill with the lingering unknown virus. How frustrating and scary to have that lingering in your home. Ada, also had a difficult time kicking it. I supplemented her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, rest, rest. As far as Asenath & Porrah catching it, oh my, let's hope......, watch carefully. IV's really helped pull Lily back from the brink of the illness/seizure cycle a few times. How is Zipporrah doing with the nursing/eating? did you get any advice/help from whiteman when you spoke with him?I'm sorry Dr whiteman reported back to you with the news that he did.Thankful that the MRI etc was normal. Lily had high lactic acid. I remember reading an E Medicine article on Lactic acidosis and pretty much panicking! That was near the beginning of the journey, we become "use to " so many things that one shouldn't. Anyways, Lily's levels were quite high off and on, more high than low. We never did have it "treated" per se. Hopefully Whiteman will take a more pro-active course with her, since he is the expert. My thoughts are with you and yours, Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks for the note . It really has been frustrating and some what a panicking week for me. I too read the E-medicine articles and began to panic. I also remember how several of the children that have had short lives have battled high lactic acid issues and how major organs can choose to shut down due to it. That plus this mysterious virus is almost too much added onto already overwhelming health issues. We have wondered if whooping cough might be the culprit as the symptoms are so similar but REALLY hope it is not. Luke is just beginning to improve and hasn't coughed as much and is breathing easier he says. (After 1 month!) I just can't imagine Asenath or Porrah having this long of an illness. I worry how they will be able to spit out all the phlegm buildup and how they will react to not being able to breath. Steroids suppress the immune system, so if my healthy kids are having such a difficult time, how can Asenath actually get through it?! Or Porrah, we do not know what all is going on in her and being so young; to deal with this, especially since she already has reflux issues and gagging! That is what makes me start to panic. Not knowing how they will handle this illness if they get it. Asenath already has begun it and swallows lots after coughing and has an ear infection. She is starting antibiotics tonight and hopefully it will help her. I just have a lot of fear right now. You don't know how grateful I am to have this group to talk with. I know you all understand. With Porrah's eating issues, she is doing a little better but still is battling the problems. We have a GI appointment on the 2nd and hopefully she will do ok until then. She is doing better today than the past two days following the anesthesia thankfully! Darla: mommy to Asenath, Zipporrah, and the gang Re: -stress issue Darla,I printed all of your emails and thought I would respond to all three in this one.Luke- Yes pursue, when you have time, giving him the opportunity to speak with some one outside of the family. It make take more than one visit for him to feel comfortable enough with that person to really open up. I'm so sorry that they are still ill with the lingering unknown virus. How frustrating and scary to have that lingering in your home. Ada, also had a difficult time kicking it. I supplemented her with mega Vit C & Fish Oil & Zinc Lozenges. and lots of Rest, rest, rest. As far as Asenath & Porrah catching it, oh my, let's hope......, watch carefully. IV's really helped pull Lily back from the brink of the illness/seizure cycle a few times. How is Zipporrah doing with the nursing/eating? did you get any advice/help from whiteman when you spoke with him?I'm sorry Dr whiteman reported back to you with the news that he did.Thankful that the MRI etc was normal. Lily had high lactic acid. I remember reading an E Medicine article on Lactic acidosis and pretty much panicking! That was near the beginning of the journey, we become "use to " so many things that one shouldn't. Anyways, Lily's levels were quite high off and on, more high than low. We never did have it "treated" per se. Hopefully Whiteman will take a more pro-active course with her, since he is the expert. My thoughts are with you and yours, Please contact mito-owner with any problems or questions.