Re: Kass/all-Return from Mayo (Kleins)

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Thanks for the note. I am actually doing pretty well at this point, amazingly. I have adjusted to the shock of Porrah having Mito as well as Asenath. I am always on edge concerning Asenath's vasculitis issues but know God is in control and I try to enjoy each day with her, knowing we don't know what the future holds for her (or for anyone else, for that matter). My health problems don't worry me much as I have been battling this stuff quite a bit since 1990 and even before for minor issues. I have been drained these past few days though due to the hospital stay and the meds they gave me. Plus, they wouldn't let me eat from 11 :30 PM until the next evening at 6 PM "just in case" they could fit my operation in. This I was definitely not pleased with because I found out later there was no possible chance they were going to operate that day due to the surgeon's full caseload. So I had to go without food, on medication that drained me, and still try to nurse a baby at the same time. I felt more weak than I have ever felt after labor. It was pretty bad. I could hardly walk or stay awake. Being home and drugless is soooo much better. I am still tired, but feeling much stronger. I am trying to get lots of rest. Admittedly, it has been a very rough year thus far. Lots of time in hospitals, sickness everywhere, etc. but I am holding up emotionally at least. I appreciate you and all the girls here on the list and the care you have for my family. It means a lot to my family and I. I think it would be much harder without the support of this group. I hope I can return help and support to all of you as well. Darla: mommy to Asenath, Zipporrah, and the 7 other kiddos Re: Return from Mayo (Kleins) {{{{{{Darla}}}}}}} Take it easy hun and know prayers are going up that your recovery from all of this will be quick. Lots of information to digest is an understatement!!! I know it took me a long while to really really digest everything we learned while we were at Mayo and there is still some that has not completely sunk in yet. Its the down side to having multiple people seen at the same time. It means alot that they have so much insight and so much to offer, just takes a while for us poor old mom's to take it all in sometimes. Give yourself some time hun and know you'll digest it all eventually. So very sorry to hear the news was disappointing on Asenath. She remains in my prayers as you all do. Relieved to hear things looked good for Tirzah and am hoping for similar news on Luke hun. Very much hoping the therapy and supplements will be a help to Zipporrah very quickly hun. Huge sigh on your results....not that they were a surprise I know, but its still a real blow to get the news anyway. Its one thing to deal with our children's issues, but to add our own to the mix is very difficult and puts everything in a complicated perspective. Its difficult enough to comtemplate the future of our own children and what their needs may be, to add in those same issues for ourselves, being their primary caretakers, can really really be difficult to deal with. Please know I am here if you need to talk.......I *think* (Lord knows this could change tomorrow) that I have made some changes in my life that have helped my health and am more than willing to share Also just willing to be there as a shoulder. If you need my number, email me and I'll send it right out hun. For now, take care and know I am over here praying and rooting for you!! {{{{{Darla}}}}}}} -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) Featured children on the Make A Child Smile. Org site at http://www.makeachildsmile.org for the month of February "Life is not about the breaths we take, but the moments that take our breath away" Unknown Darla Klein wrote: The trip was tiring and I think all the traveling has caught up to me. I am experiencing lots of muscle pain and weakness. I am very exhausted and have been resting most of yesterday and today but wanted to update you all. I did enjoy meeting both Heidi and Krystena and their families. Heidi stayed at the same hotel so her son and Asenath played together in the water while us adults were able to talk. I met Krystena at the hospital for a brief time as well and although not much time together, enjoyed the visit. As far as Asenath, she had another small stroke episode about two weeks ago and so the doctors want us to remain at the same steroid level rather than reduce monthly for now. We also will be repeating her brain scans one month earlier than planned so will need to return in April for those. Her Carnitine and acidosis issues we! re a little worse so we are increasing her meds again also. Disappointing visit for her, but nice to know the docs are on top of everything with her. Tirzah's tests came back pretty normal so no Mito signs. This was great news! Luke had basic blood tests done and an eye examination and I will let you know the results when we hear back. He does need glasses and no help was really given concerning his vision loss when he looks up. Zipporrah continues to have her tight muscles and left-sided issues and has begun her Carnitine and COQ10 as well as some Prilosec for reflux. Weekly therapy has begun. Disappointingly, I heard back from several abnormal tests for myself as well. I had a high lactic acid level drawn on Tuesday (as well as several other abnormal tests) so it was repeated Wednesday along with lots of other tests, and I am assu! ming due to my weakened condition with lots of muscle pain that the la ctic acid is on the rise. Dr Whiteman also noticed something he had missed from last October that concerned him and so I will be seeing a Cardiologist in the next month or so as well as a GI doctor for possible pancreatitis issues. (I have been having severe upper abdomen/chest pains for the past 5 1/2 months with lots of acid/burning and pain radiating through to my back) The EKG I did last October suggested the possibility of a possible small past heart attack so as precaution I will see a Cardiologist, although my heart ultrasound was normal. I also plan to talk to that doctor about my blood pressure drops when first standing or bending over and back up causing blackouts. Lots of information to digest from the last several trips and I feel a little overloaded with it all. Trying to digest it all and remember the important stuff. I am glad to be home! Bed, here I come! & nbs! p;Darla: mommy to Asenath, Zipporrah, and the other 7 kiddosPlease contact mito-owner with any problems or questions. 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