tag:blogger.com,1999:blog-7946092121614357964.post4936655003806239100..comments2023-10-28T02:57:57.520-07:00Comments on What Used To Be Perfect But Now Is Broken: I hate when the roller coaster goes downhillANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-7946092121614357964.post-34497308978683680512010-09-16T19:30:51.901-07:002010-09-16T19:30:51.901-07:00I have those thoughts as well sometimes. But I tr...I have those thoughts as well sometimes. But I try to push them out as fast as they come in. They've been pestering me spuradically for 4 years now, so I wouldn't call it foreshadowing!! :) Just mommy worry for our special girls.Adrianehttps://www.blogger.com/profile/06411467150718371127noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-88807884158089931062010-09-13T11:12:13.543-07:002010-09-13T11:12:13.543-07:00I hate the roller coaster ride too. I watched your...I hate the roller coaster ride too. I watched your videos and she is just so precious and innocent. You can notice the head boobles so I hope you get your answers for that.<br /><br />I know how unsettling it can be to not know everything, to not know the future and it is easy to scare ourselves with what ifs. Keep positive and enjoy each day as they come. I have taught myself to not think ahead Tanyahttps://www.blogger.com/profile/14504757682274591553noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-24816854050415676442010-09-12T20:05:56.114-07:002010-09-12T20:05:56.114-07:00Please keep us posted. I can see the wobble, did t...Please keep us posted. I can see the wobble, did the dr. see the videos??? Duh... I am praying that you receive answer so soon so you can either deal with it or forget it.Cathyhttps://www.blogger.com/profile/00725698005835278265noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-21524867430982979632010-09-11T16:00:57.201-07:002010-09-11T16:00:57.201-07:00She so so funny laughing at her program. I could s...She so so funny laughing at her program. I could sit and watch her enjoying herself all day! The wobble is there and I can see why you are concerned since it is new. The first thing that pops in to my mind is a Parkinson type wobble. As far as the bad dreams I hate to sound like the voice of doom but just because you or I or anyone is in good health and Emily isn't doesn't meant we will SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-40382936007239611802010-09-11T10:20:57.049-07:002010-09-11T10:20:57.049-07:00I hurt for you friend. Your precious girl is beaut...I hurt for you friend. Your precious girl is beautiful, the rollercoaster is hard, and its ok to want off when the hill is too fast and steep. Feel surrounded today.<br />Much love.Anxious AFhttps://www.blogger.com/profile/10911308224630696808noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-84419428897298104932010-09-11T09:51:04.328-07:002010-09-11T09:51:04.328-07:00I don't really have words other than it really...I don't really have words other than it really does just suck. It sucks to hurt for them, to worry, and then if you're like me on the other side of the "worst thing that could happen" it sucks still. We just have to hold on to what blessings these amazing children are. <br /><br />I will tell you, those head wobbles brought back a flood of memories for me. I've seen Shanhttps://www.blogger.com/profile/05803749815204807292noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-43451812079557158022010-09-11T07:06:15.193-07:002010-09-11T07:06:15.193-07:00First of all, I LOVE her shirt! So cute for schoo...First of all, I LOVE her shirt! So cute for school!<br /><br />As for the head movements, I was thinking the same thing that Lacey was. Maybe her body....muscles....nerves....are just spasming, getting used to being used in the morning???<br /><br />I have been having similiar thoughts lately, concerning Gavin. This roller coaster is no fun and some days I just want OFF! I don't want off The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-10666190953933717272010-09-11T06:18:45.843-07:002010-09-11T06:18:45.843-07:00I wish you lived here, Ben's neurologist is a ...I wish you lived here, Ben's neurologist is a world renowned neorometabolics specialist and has been able to diagnose kids that nobody else could. Hang in there...you're in our prayers.Beckyhttps://www.blogger.com/profile/08292600488274565276noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-66539525575270106782010-09-11T03:03:57.731-07:002010-09-11T03:03:57.731-07:00So sorry to hear you've had a tough week. The...So sorry to hear you've had a tough week. The head wobbles are definitely noticeable although I have no idea what they are. So lovely to see her giggling at the TV - what a sweetie.<br /><br />I hope you get some answers soon.<br /><br />Big hugs.Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-66602808597153235082010-09-10T23:39:22.776-07:002010-09-10T23:39:22.776-07:00Oh hun!
You've got yourself so worked up, al...Oh hun! <br /><br />You've got yourself so worked up, although I don't blame you, I can't even begin to imagine what this waiting game is like for you. <br /><br />The head boggling thing is quite bizarre. I've seen some of my kids with CP make similar movements but at the same time they're different to what Emily is doing. <br /><br />I'm on my knees praying for Emily - IEDS Warriorhttps://www.blogger.com/profile/00033215432772656875noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-60559429315874389782010-09-10T23:02:20.023-07:002010-09-10T23:02:20.023-07:00I read this off my blkberry so I will check out th...I read this off my blkberry so I will check out the video online tomorrow.<br /><br />As far as your thoughts...<br /><br />I know what is stewing in your head, and I know how difficult it is when you are in limbo...<br /><br />All we know is our little guy has a electron transport chain deficiency. We have no specifics as to his mito other than that- he has no syndromes or labels he falls under.Debbiehttps://www.blogger.com/profile/12469385508031005419noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-3401132582945470062010-09-10T21:15:36.436-07:002010-09-10T21:15:36.436-07:00Oh I love that little giggle of hers. She is a sw...Oh I love that little giggle of hers. She is a sweetheart isn't she. Well, you know I've been thinking about this too with Samantha lately. I get so bothered because I often wonder if it's the Lord or something trying to prepare me or if I'm just going through another reality check of how life is so fragile...for any of us really, but especially for these little kids. Emily Jennyhttps://www.blogger.com/profile/13101399559614616079noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-43974892097326243862010-09-10T21:07:54.026-07:002010-09-10T21:07:54.026-07:00Sending peace and prayers to your worried mommy he...Sending peace and prayers to your worried mommy heart.Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-31857027455602958572010-09-10T20:38:54.810-07:002010-09-10T20:38:54.810-07:00I think your nervous because these test results ha...I think your nervous because these test results haven't come back yet, and it could be potentially bad news. It has you all worked up. I do see those head movements. Its hard to say what they are, it doesn't look like a seizure. I wonder if its her body waking up. Her muscles spasming.Laceyhttps://www.blogger.com/profile/03321275110857561824noreply@blogger.com