Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Glad to hear they are getting wishes. What are you thinking about doing or receiving? Best holiday wishes to you as well. Hey, did you notice that Asenath was in the Sunday newspaper to help advertise the MAW Jolly Holiday Lights? We found out on Christmas Eve and so missed the article ourselves as Dean didn't see it and threw the paper, but his parents somehow saw her and clipped the article out and hung it on their wall. It was so neat to see they chose her out of all the other kids to use to advertise the lights. We think it might have been because we had went to the lighting exhibit just a week or two before and met some of the MAW workers there. It was so amazing! See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) wishes granted Hello all. I hope you had a very happy holiday. We received a late Christmas present today when Make-A-Wish called to let us know and Lindsey have been granted wishes. We are very excited for them! Blessings, Kim - Mom to and Lindsey (3) Partial Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 wishes granted > > > Hello all. I hope you had a very happy holiday. We received a late > Christmas present today when Make-A-Wish called to let us know and > Lindsey have been granted wishes. We are very excited for them! > > Blessings, > Kim - Mom to and Lindsey (3) Partial Complex I > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2005 Report Share Posted March 17, 2005 Kim, Sorry to butt in, but I saw this post and I had to respond. I definately understand about this happening at night being your biggest nightmare. That's your moms intuition talking to you. If your neuro doesn't know of a monitor, I don't know if you see a pulmonologist, but if so they will know what you need. If you're not seeing one talk to the pediatrician, even if they think you're being silly insist. There has to be something appropriate for their age. I know they are older, if I remember right 7? Leighann is only 2, we have her on an apnea monitor at night, it's usually used for newborns, but shes small so they've adjusted some. It monitors breathing, and also slow or fast heartbeat, its our security blanket. I know this would not be the right thing size wise for your girls, but they would know otherwise. Insurance pays for this, the doctors know how to order it so that they cover it. This was always my biggest fear also, after her 2nd "big one", both right before going to bed and right after waking up we had it put in, then we went seizure free for 15 months, weined her off the seizure med, then she started having them again, she was off the monitor by then. She has the staring seizures, no noise, just a look, she can't pull herself out of them, then after being in it long enough goes into respiratory failure. If we don't see the look we don't get the headstart to get her out of it before she gets in trouble. Anyway, my husband works nights, and my kids usually sleep in my room with me for most of the night anyway, well Leighann just had a terrible time going back to sleep one night, so of course I put her in bed with me, we both went to sleep, and about 5 am I was woke up by Leighann gasping for air, when I turned on the light she was already turning blue, in a full seizure, in respiratory failure. Thank goodness we got her the help she needed quick, and she ended up being okay after they finally stopped the seizure and had to intubate her to help her breathe. I thought she was safe because she was right next to me in bed. If you can't hear her there where can you. Please, I am not trying to scare you, I just know I had these fears and they ended up being there for a reason, like I said its moms intuition. Just talk to the doctors, no matter how silly they think it is, just push, because you know how to protect your children, they're your kids. I really hope this helps instead of scares you, we get these feelings for a reason, my daughter is back on the monitor, since this happened in December, and will be on this or something similar until we get the seizures more under control again, its definately our peace of mind, we can hear the alarm all through the house, and since being on it we have picked up on a few problems by accident, like apnea, and a slow heartbeat at times through the night that we wouldn't have picked up on without it. I wish you the best of luck and if I can give you any info to help to get the insurance to cover it just ask. Lois zonisamide (spelling) or zonnegram> > > > Anyone one on either of these seizure meds and if so what has been> your experience? We are on lamictal and keppra right now with no> success. We may add zonisamide tomorrow. I do know that it can cause> acidiosis but we are left with very little to try. Any suggestions,> comments would be greatly appreciated.> > Thanks> > Geri-Anne and Wyatt, complex I> caringbridge.org/mn/wyattc> > > > > > Please contact mito-owner with any problems orquestions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi Kim Isaac is doing good. His bowels are pretty good still constipated sometimes. I have not noticed anything with the creatine yet He has been on it since we talked he takes it just fine. I have been very consistant. I am hoping to see stronger muscles! His legs feel firmer Thank you for asking hope your girl is doing good Angel Angel Hi Angel. I was wondering how Isaac is doing on the creatine? Did his bowel issues go away? I hope it is working well for him! Kim- Mom to and Lindsey (3) Partial Complex IPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Kim, Thank God you found her in time. My prayers are with you and your Mom. Keep us posted. CathyD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2011 Report Share Posted November 14, 2011 Kim, Thank God you found her in time. My prayers are with you and your Mom. Keep us posted. CathyD Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.