tag:blogger.com,1999:blog-7946092121614357964.post3541826950019559804..comments2023-10-28T02:57:57.520-07:00Comments on What Used To Be Perfect But Now Is Broken: How is Emily doing?ANewKindOfPerfecthttp://www.blogger.com/profile/11978293330074662766noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-7946092121614357964.post-72314210618591922232011-01-21T15:39:56.449-08:002011-01-21T15:39:56.449-08:00I so hear you on the blog writing. Sorry to hear a...I so hear you on the blog writing. Sorry to hear about peanut's eeg. These things just suck.Carlahttps://www.blogger.com/profile/04510618437784856195noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-46408153841861785132011-01-20T05:15:28.553-08:002011-01-20T05:15:28.553-08:00dear peanut's mom,
you commented on my blog &q...dear peanut's mom,<br />you commented on my blog "calvins story". thank you. we call calvin peanut, too. i am sorry to hear about your daughter. i like your blog and since i am new to blogging i have not read one that shares our experience. keep up the good work fighting for your child's health and well being.<br />xoxo, christy, calvin's momChristy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-44801902538430876522011-01-19T10:00:12.236-08:002011-01-19T10:00:12.236-08:00So sorrySo sorryJulie Shawhttps://www.blogger.com/profile/09194182977679053576noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-67416584399953257962011-01-19T09:49:15.510-08:002011-01-19T09:49:15.510-08:00Oh, I'm heartbroken to hear that Emily hasn...Oh, I'm heartbroken to hear that Emily hasn't been doing well. Hopefully the NVS will be the magical tool to help control the seizures. You guys are in my thoughts and prayers.<br /><br />DonnaTimothy Ethanhttps://www.blogger.com/profile/07855085424236228088noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-15269392520354325922011-01-18T15:22:29.047-08:002011-01-18T15:22:29.047-08:00Hi Emily's mommy! My name is Jessica. I had go...Hi Emily's mommy! My name is Jessica. I had googled my son's disease and i saw your daughters pictures. So I started to read your blog and saw that you wrote about Ethymalonic Encephalopathy, but I didnt read if you had ever gotten the results from Italy. My son has Ethylmalonic Encephalopathy, he too had his blood sent to Milan, Italy and 2 1/2 months later the results were in. His JAYDENS MOMMYhttps://www.blogger.com/profile/15771649017551193476noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-10337415979206386672011-01-18T10:18:07.383-08:002011-01-18T10:18:07.383-08:00So sorry to hear about the latest challenges. I h...So sorry to hear about the latest challenges. I hope you get those seizures under control soon. I hate seizures.ferfischerhttps://www.blogger.com/profile/00184449747019920745noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-34806872513988531032011-01-18T08:08:51.223-08:002011-01-18T08:08:51.223-08:00Praying for sweet Emily! I'm sorry things con...Praying for sweet Emily! I'm sorry things continue to be hard. I'm grateful that she's still here though...she's a fighter!Beckyhttps://www.blogger.com/profile/08292600488274565276noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-47193572755685269872011-01-18T07:52:30.116-08:002011-01-18T07:52:30.116-08:00Praying for Emily :( Those pictures are so heartb...Praying for Emily :( Those pictures are so heartbreaking. I hope the VNS is your answer.Donnahttps://www.blogger.com/profile/14372563554937434493noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-42992266109123037292011-01-17T16:30:06.296-08:002011-01-17T16:30:06.296-08:00Poor girl, I was hoping those seizures were gettin...Poor girl, I was hoping those seizures were getting better. I'm sorry to hear about all of this.....<br />Big hugs!Colleenhttps://www.blogger.com/profile/13538192615781547765noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-84469217827705737012011-01-17T15:46:04.824-08:002011-01-17T15:46:04.824-08:00I'm so sorry...I can't even imagine how yo...I'm so sorry...I can't even imagine how you feel but I imagine that everyone constantly asking you does absolutely nothing to help...<br />thinking of you..Not a Perfect Momhttps://www.blogger.com/profile/09538588358382300444noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-60299793603337466952011-01-17T15:15:09.001-08:002011-01-17T15:15:09.001-08:00I am sorry to hear things are so rough right now, ...I am sorry to hear things are so rough right now, sending lots of love and positive thoughts your way and hoping things start to improve real soon XxxxPosh Tottyhttps://www.blogger.com/profile/06507121890639522780noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-56720059540944459502011-01-16T16:16:11.509-08:002011-01-16T16:16:11.509-08:00You and I have never met, but I understand complet...You and I have never met, but I understand completely. We are in the same boat. Reading your post brings tears to my eyes. It is so frustrating that these damn tornados keep happening to our kids. Hunter my son has infantile spasms and has had for 2.5 years. We have had no relief either. Just wanted to let you know I understand and am thinking about you and your family.Kileyhttps://www.blogger.com/profile/01554325358151355034noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-56708265616536302272011-01-16T15:36:58.413-08:002011-01-16T15:36:58.413-08:00There are no words to describe how much I hate sei...There are no words to describe how much I hate seizures and what they do to some of the most incredible children. I am so sorry that Emily is having so many more of them and that she will require the VNS. I pray that it will give her relief. I am holding Emily and your entire family close in prayers!Bethanyhttps://www.blogger.com/profile/03739014153757925986noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-27788268235166826272011-01-16T08:56:20.764-08:002011-01-16T08:56:20.764-08:00Ugh, what we would do if seizures had a physical f...Ugh, what we would do if seizures had a physical form that we could beat to a bloody pulp! I hate the damn things, and I hate what they are doing to our Emily. <br />Jax EEG is horrid, but because he is not having a lot of clinical seizures, everyone things he's fine. But how much would he be able to do if the seizures were controlled? <br />Kiss my girl for me, and hopefully we'll be Laceyhttps://www.blogger.com/profile/03321275110857561824noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-13579991980472727402011-01-16T08:07:49.163-08:002011-01-16T08:07:49.163-08:00I really hope that the VNS will help! It sucks tha...I really hope that the VNS will help! It sucks that she needs it but hopefully it will at least help. <br /><br />Praying for you all!!Michelle and Seanhttps://www.blogger.com/profile/05523818279110462492noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-16182717943591994212011-01-15T22:16:39.722-08:002011-01-15T22:16:39.722-08:00All I can say is :( Hopefully that prize winning ...All I can say is :( Hopefully that prize winning smile of hers keeps you going each day.Denisehttps://www.blogger.com/profile/00587160152394379314noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-16177939211228893012011-01-15T20:25:10.229-08:002011-01-15T20:25:10.229-08:00Tears for you and your familyTears for you and your familyRebecca Jacksonhttps://www.blogger.com/profile/16961925769061747726noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-3777360707020434992011-01-15T19:26:28.924-08:002011-01-15T19:26:28.924-08:00So sorry to hear this :(So sorry to hear this :(Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-28760096172190024892011-01-15T19:13:32.788-08:002011-01-15T19:13:32.788-08:00Oh that precious face. I am so sorry she is going ...Oh that precious face. I am so sorry she is going through so much. I am praying for answers and a break from these horrible things. I know it is so hard to blog, also to tell everything over and over. Sometimes I just hide from my phone because I barely understand all that is happening to Annabel much less trying to explain.<br />As far as the question you asked about the mitronoff, he isn't Cathyhttps://www.blogger.com/profile/00725698005835278265noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-21359403940563482762011-01-15T18:36:52.938-08:002011-01-15T18:36:52.938-08:00Precious beautiful Emily. All you can do is push f...Precious beautiful Emily. All you can do is push forward, love on your girl, and try your best to feel surrounded.Anxious AFhttps://www.blogger.com/profile/10911308224630696808noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-6884236055675207812011-01-15T18:24:07.773-08:002011-01-15T18:24:07.773-08:00Oh sweet Emily.How I wish we could find the magic ...Oh sweet Emily.How I wish we could find the magic to rid you of these nasty things.To ease your mommies worried and anxious heart.Hate seeing that EEG.Hate that I know what those squiggles mean.Hate this for you.Really I do.Will just keep praying.Only thing I know to do.<br /><br /><br />Sending love and prayers.Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-80844906360562008112011-01-15T17:48:16.333-08:002011-01-15T17:48:16.333-08:00Oh, I am so sorry to hear this. My heart goes out...Oh, I am so sorry to hear this. My heart goes out to you and your beautiful, sweet little girl. Hoping for some relief soon...Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-42157525903330129072011-01-15T17:43:59.216-08:002011-01-15T17:43:59.216-08:00I have been trying so hard to get Maddie on her Ke...I have been trying so hard to get Maddie on her Keto Diet and the Nutritionist told us she wants 5 bottles of Ketocal a day! My madie only wants about 3-4.With huge food adversions...solids have been out of the picture.. Twitches and Jerks and Med Tonics still get her each day..As she is on 3 ketos a day and one Pediasure.. Your blog has made me teary...sweet girl. Strong mama...I hear you too...Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-57014881373218554342011-01-15T17:27:58.565-08:002011-01-15T17:27:58.565-08:00Oh, I hear you and I know, I know, I know. Love an...Oh, I hear you and I know, I know, I know. Love and blessings and peace and ease to you, dear Emily --Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-7946092121614357964.post-65575204343285969332011-01-15T16:25:03.784-08:002011-01-15T16:25:03.784-08:00I'm so sorry that the seizures are getting wor...I'm so sorry that the seizures are getting worse! Watching you child having them and not being able to do anything about it is such a frustrationg and powerless feeling! I HATE seizures!!! Praying the VNS helps and Emily and your family are able to move on with your life! <br /><br />I love her hair in the braids! What a cutie! Love and Big Hugs!!!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.com