Guest guest Posted February 26, 2005 Report Share Posted February 26, 2005 It's . Your Name wrote: We do have one other dad in the group. But I'm sorry to say I can'tthink of his name at the moment. He's from Australia. Oops, I know Ispelled that one wrong. But it is nice to have a male's perspective. And even though it's annoying to always ask about the mom, you willslowly change their thinking. My husband, usually always takesLeah to the hospital to admit her if she needs admitting. And I don'tknow if they have ever asked about me, the mom. He even stays in thehospital with her. Some times I feel that the doctor over the phonelistens better to him explain Leah's disease than if I was too. Keep upthe good work. Nerenhausenmom to Leah> > Darla;> > No harm done. It is not too frequent that the fathers> are that involved with health care. I think I am the> *only* guy subscribed to the homeschool support email> list we have. > > At one particular hospital that we have been to> several times, they still want to know who the mother> is and where is she when I check in. Not sure what> the point is, but it is annoying. Makes me more> sensitive to these kinda things.> > Rod> --- Darla Klein wrote:> > > Sorry Rod. I often mention the guys and grandmas> > too, but slipped on this > > one. Thanks for the note.> > > > See www.caringbridge.org/ia/mitomomof9 and> > www.heartbeatsformito.org to see > > a photo look into what Mito looks like> > Darla: mommy to> > Asenath (4) Mito, CNS Vasculitis, strokes,> > migraines, seizures, G-tube, > > hypotonicity, disautonomy, SID, global delays,> > asthma, cyclic vomiting, > > bladder issues, wheelchair for distances, eye> > issues, autistic behaviors, > > gastric emptying issues...> > Zipporrah (14 months) Mito, strokes, neuro-motor> > planning dys., SID, GERD, > > dysphasia, 100% G-tube fed, speech delays, extreme> > fatigue, excessive > > phlegm, asthma, trach issues, aberrant subclavian> > artery, disautonomy, > > hypertonicity, migraines, possible seizures, dumping> > syndrome, iron > > deficiency, ...> > Luke (16), Leah (14), Rachael (13), Isaac (10),> > Tirzah (8), Kezia (4), & > > Marquis (3), Joey & (12 months) (some with> > Mito symptoms)> > > > > > Brand New Member - Confused> > > >> > > >> > > > >> > > > >> > > > >> > > > > Hello everyone,> > > > >> > > > > I hope it's ok that I'm here. I have a 4 year> > old> > > > son who, for the> > > > > past 2 years, has been having hospital> > appointment> > > > after hospital> > > > > appointment, test after test in an attempt to> > work> > > > out what's behind> > > > > his global developmental delay.> > > > >> > > > > I'm not very good with medical stuff> > > > unfortunately, so please excuse> > > > > my bad attempt at trying to explain things.> > > > >> > > > > As I said he has a global delay, he has low> > muscle> > > > tone, he didn't> > > > > walk until 20 months, he still doesn't have> > > > functional speech,> > > > > problems with fine and gross motor skills. He> > also> > > > has a lot of> > > > > autistic characteristics, a lot of obsessive> > > > behaviour, problems with> > > > > social interactions, behavioural difficulties> > etc.> > > > >> > > > > In the past 18 months he has had 4 seizures,> > the> > > > first putting him in> > > > > intensive care and lasting 50 minutes. They> > have> > > > all been teamed with> > > > > either sickness or a high temperature, which> > can> > > > be common, but> > > > > because of the severity of the first he is on> > > > seizure medication.> > > > >> > > > > He has had every test under the sun that you> > can> > > > think of, his> > > > > metabolic doctor has had a field day I think.> > Some> > > > of which weer very> > > > > invasive which I have found hard to cope with.> > He> > > > has had two> > > > > abnormal results come back from urine tests> > and> > > > just today we were> > > > > told that when doing dna tests on his muscle> > > > biopsy they've found a> > > > > defect in his mitochondrial DNA.> > > > >> > > > > It's a relief to be getting some answers> > finally,> > > > but it's still> > > > > quite scary. I don't even really know what> > we're> > > > dealing with. They> > > > > don't have any specifics to tell me, just that> > > > they are thinking it> > > > > is likely that he has a disorder that has been> > > > inherited from me. If> > > > > it's what they are thinking it could be there> > is a> > > > 30% chance that> > > > > any other children I have will also be> > disabled. I> > > > found this earth> > > === message truncated ===> > > > > __________________________________ > Do you Yahoo!? > Yahoo! Mail - Find what you need with new enhanced search.> http://info.mail.yahoo.com/mail_250> > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Thanks . I knew some one would remember for me. Nerenhausen mom to Leah > It's . > > > > Your Name wrote: > > We do have one other dad in the group. But I'm sorry to say I can't > think of his name at the moment. He's from Australia. Oops, I know I > spelled that one wrong. But it is nice to have a male's perspective. > And even though it's annoying to always ask about the mom, you will > slowly change their thinking. My husband, usually always takes > Leah to the hospital to admit her if she needs admitting. And I don't > know if they have ever asked about me, the mom. He even stays in the > hospital with her. Some times I feel that the doctor over the phone > listens better to him explain Leah's disease than if I was too. Keep up > the good work. > > Nerenhausen > mom to Leah > > > > Darla; > > > > No harm done. It is not too frequent that the fathers > > are that involved with health care. I think I am the > > *only* guy subscribed to the homeschool support email > > list we have. > > > > At one particular hospital that we have been to > > several times, they still want to know who the mother > > is and where is she when I check in. Not sure what > > the point is, but it is annoying. Makes me more > > sensitive to these kinda things. > > > > Rod > > --- Darla Klein wrote: > > > > > Sorry Rod. I often mention the guys and grandmas > > > too, but slipped on this > > > one. Thanks for the note. > > > > > > See www.caringbridge.org/ia/mitomomof9 and > > > www.heartbeatsformito.org to see > > > a photo look into what Mito looks like > > > Darla: mommy to > > > Asenath (4) Mito, CNS Vasculitis, strokes, > > > migraines, seizures, G-tube, > > > hypotonicity, disautonomy, SID, global delays, > > > asthma, cyclic vomiting, > > > bladder issues, wheelchair for distances, eye > > > issues, autistic behaviors, > > > gastric emptying issues... > > > Zipporrah (14 months) Mito, strokes, neuro-motor > > > planning dys., SID, GERD, > > > dysphasia, 100% G-tube fed, speech delays, extreme > > > fatigue, excessive > > > phlegm, asthma, trach issues, aberrant subclavian > > > artery, disautonomy, > > > hypertonicity, migraines, possible seizures, dumping > > > syndrome, iron > > > deficiency, ... > > > Luke (16), Leah (14), Rachael (13), Isaac (10), > > > Tirzah (8), Kezia (4), & > > > Marquis (3), Joey & (12 months) (some with > > > Mito symptoms) > > > > > > > > > Brand New Member - Confused > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello everyone, > > > > > > > > > > > > I hope it's ok that I'm here. I have a 4 year > > > old > > > > > son who, for the > > > > > > past 2 years, has been having hospital > > > appointment > > > > > after hospital > > > > > > appointment, test after test in an attempt to > > > work > > > > > out what's behind > > > > > > his global developmental delay. > > > > > > > > > > > > I'm not very good with medical stuff > > > > > unfortunately, so please excuse > > > > > > my bad attempt at trying to explain things. > > > > > > > > > > > > As I said he has a global delay, he has low > > > muscle > > > > > tone, he didn't > > > > > > walk until 20 months, he still doesn't have > > > > > functional speech, > > > > > > problems with fine and gross motor skills. He > > > also > > > > > has a lot of > > > > > > autistic characteristics, a lot of obsessive > > > > > behaviour, problems with > > > > > > social interactions, behavioural difficulties > > > etc. > > > > > > > > > > > > In the past 18 months he has had 4 seizures, > > > the > > > > > first putting him in > > > > > > intensive care and lasting 50 minutes. They > > > have > > > > > all been teamed with > > > > > > either sickness or a high temperature, which > > > can > > > > > be common, but > > > > > > because of the severity of the first he is on > > > > > seizure medication. > > > > > > > > > > > > He has had every test under the sun that you > > > can > > > > > think of, his > > > > > > metabolic doctor has had a field day I think. > > > Some > > > > > of which weer very > > > > > > invasive which I have found hard to cope with. > > > He > > > > > has had two > > > > > > abnormal results come back from urine tests > > > and > > > > > just today we were > > > > > > told that when doing dna tests on his muscle > > > > > biopsy they've found a > > > > > > defect in his mitochondrial DNA. > > > > > > > > > > > > It's a relief to be getting some answers > > > finally, > > > > > but it's still > > > > > > quite scary. I don't even really know what > > > we're > > > > > dealing with. They > > > > > > don't have any specifics to tell me, just that > > > > > they are thinking it > > > > > > is likely that he has a disorder that has been > > > > > inherited from me. If > > > > > > it's what they are thinking it could be there > > > is a > > > > > 30% chance that > > > > > > any other children I have will also be > > > disabled. I > > > > > found this earth > > > > > === message truncated === > > > > > > > > > > __________________________________ > > Do you Yahoo!? > > Yahoo! Mail - Find what you need with new enhanced search. > > http://info.mail.yahoo.com/mail_250 > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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