Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Sorry to hear the lab results. I am sure you must be very anxious to see the next lab results. Whatever happens, know we are all here for you. We went through the same thing with Zipporrah last year. She definitely is affected and it has been hard to accept, but I am SOOOO thankful I know enough about this disorder now that I can be much more help for her. She is so much better of because of the knowledge this group has given me and the experiences we have went through with Asenath. I often wonder if Zipporrah would be here today if Asenath hadn't been the first one to deal with these issues. Asenath began showing symptoms at about 7-8 months of age (but didn't get bad until at about 1 1/2 years, where-as Zipporrah showed symptoms pretty much at birth. Hopefully the baby's results will return ok, but if not, you have a lot of knowledge now too and can help him to do the best he can. Keep us posted please. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... Crap. > > > We just got a call from our nurse about Tylers (the new baby) newborn > screening. his CK is elevated. > This is how it all started with . > Were praying it was a lab mixup, but it seems like a big coincidence. > > were getting him retested this afternoon, but probably wont get > results for a few weeks yet. > please send us healthy vibes, the idea of 2 sick babies terrifies me. > > > Keely > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Keely, I am so sorry to hear that. I will be praying for y'all. I hope the test was just screwed up,or something .Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY Yahoo! Messenger Show us what our next emoticon should look like. Join the fun. Quote Link to comment Share on other sites More sharing options...
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