Re: lisa

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No probs.Your Name wrote:

Thanks . I knew some one would remember for me. Nerenhausenmom 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 orquestions. > >