tag:blogger.com,1999:blog-7297657180254499319.post7805551624759846884..comments2024-03-06T06:00:01.594-05:00Comments on Micah Six Eight: Our New NormalJuliahttp://www.blogger.com/profile/04814524050417570766noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-7297657180254499319.post-77237025792587200062017-11-24T06:12:59.182-05:002017-11-24T06:12:59.182-05:00It seems that her little fragile soul starts sensi...It seems that her little fragile soul starts sensing you are good people and try to help her. God bless her heart :)Ágneshttps://www.blogger.com/profile/02433357291940521181noreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-23102368484636797712017-11-22T13:59:54.945-05:002017-11-22T13:59:54.945-05:00Hope you get some answers soon and the medication ...Hope you get some answers soon and the medication she needs. Mary is so cute. <br />Having a clean house is wonderful but nothing compared to being able to help your little ones to heal and adjust Sending strength <br />Kate GermanyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-47004081721217867722017-11-19T20:20:13.997-05:002017-11-19T20:20:13.997-05:00Goodness that is so many. When our little one was ...Goodness that is so many. When our little one was having them, it was by the point where her brain damage had left her bedridden so while they were sometimes nearly as frequent as this she was not mobile and at risk of hurting herself in the same way your little girl is. Hers were often absence, so she would space out for a moment then come back to us. I called her little brain an electrical storm. The myoclonic type were pretty frustrating. She never got relief, but she had so much other stuff going on and was on so many meds it was hard to narrow down what was helping, what was hurting more than helping and what wasn't working at all. We never got a chance to try some alternative things we'd researched. She's forever free of her broken body now and surely running around Heaven keeping the angels busy. I hope for little Mary Sasha that she gets to experience so much more of life soon! I hope something works quickly and so well that her epilepsy is but a blip in her life and not a major major part of her every day. Julia, Too!noreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-41869441901686813202017-11-18T07:41:29.616-05:002017-11-18T07:41:29.616-05:00She drops and then jerks - about 3-5 seconds in to...She drops and then jerks - about 3-5 seconds in total... very short - very frequent - about 50+ in a day and that is conservative. BiblioPlanhttps://www.blogger.com/profile/03280711675527287905noreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-69230216461678465922017-11-17T21:06:31.504-05:002017-11-17T21:06:31.504-05:00Oh I am hoping for a breakthrough for this little ...Oh I am hoping for a breakthrough for this little one! Is she having drop seizures? So they are short and frequent? Not the spastic/stuff/jerky kind? Curious is she experiencing only one kind or does she have a mix of seizures. I wish we could understand the brain better in order to get these to stop for people. They are heartbreaking. We dealt with absence and drop and myoclonic seizures for a few years before our little one left. I know one day science will understand these mechanisms of misfire in the brain better and maybe even a cure!! but until then I just hope for relief for her so her life can be a bit more normal and her cognition doesn't suffer. She deserve to experience all of life that was placed on hold while in those orphanages. Sweet love. Julia, Too!noreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-89170385549798285902017-11-17T11:05:38.555-05:002017-11-17T11:05:38.555-05:00I stand in complete and utter awe of the depth of ...I stand in complete and utter awe of the depth of understanding you have of your little girl. You clearly understand and feel her situation; she just wants to stand up and walk across the floor without everyone freaking out. This is an outstanding gift the Lord has given you, this knowing. It means you are meeting Mary where SHE is, and by God's grace, you can bypass yourself and enter in to her unique, demanding, unknown to you previously world of living with the seizures. Only God could give you this. He gives mothers what they need to mother. Thank you God, for giving Mary SUCH A MOTHER! Bind them together, even in this place of fear and pain and create Your beautiful masterpiece!<br />Sending love and praying,<br />Kelly MAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-3446415272685411112017-11-17T08:58:41.475-05:002017-11-17T08:58:41.475-05:00Praying praying praying for the very best treatmen...Praying praying praying for the very best treatment to get the seizures under control. And for strength and endurance for all of you!Anfisanoreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-23592367326874536012017-11-16T21:41:38.814-05:002017-11-16T21:41:38.814-05:00I wish I was closer to come help youI wish I was closer to come help youhappyhartmanhttps://www.blogger.com/profile/10698863362038219785noreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-40030046642092033322017-11-16T18:36:37.115-05:002017-11-16T18:36:37.115-05:00Julia, I've been following all your updates bu...Julia, I've been following all your updates but haven't posted. I am looking forward to the day when your specialists find something that controls the seizures so she can get on with other things. I can only imagine what a surprise that will be for her when she stops having the seizures. You are in my thoughts and I am so glad to see girl toys on that floor!<br /><br />Sue H.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7297657180254499319.post-45514364374405627222017-11-16T15:50:28.905-05:002017-11-16T15:50:28.905-05:00Thanks for the updates - despite the difficulties...Thanks for the updates - despite the difficulties, it's clear that considerable progress is being made on several fronts! I am glad that Mary is settling down and is happier and more at ease, and expect that will continue. Legos are a great bond!<br /><br />Does the hospital provide a translator? Though it sounds like Mary is being a trouper. <br /><br />As for the helmet: is it available in a pretty color, and can it be decorated with stars or flowers or something cheery? I hope that as Mary's seizures get under better control, her world (and yours!) will open up.<br /><br />Hang in there - a messy house is a sign of a creative and abundant life (or so I frequently tell myself...:-) )<br /><br />Susan in Kentucky<br />Cousin to 2 from U.Anonymousnoreply@blogger.com