tag:blogger.com,1999:blog-33281653.post2724433449464858106..comments2023-09-04T11:20:08.804-05:00Comments on Life with the 'Tars: Shut up already...Kylahttp://www.blogger.com/profile/03311014761113076785noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-33281653.post-5981799487029515822007-07-16T08:42:00.000-05:002007-07-16T08:42:00.000-05:00Insert neuro for ped and you have my situation. My...Insert neuro for ped and you have my situation. My son has epilepsy, supposedly LKS. Every blink, twitch, developmental regression I call. We are now headed towards our fourth neuro with no answers. I will find the right one, some day but without my notes and observances it would be much harder. Keep watching her. You'll find answers!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-40040741549552518842007-07-16T07:38:00.000-05:002007-07-16T07:38:00.000-05:00Please keep the on going journal going...It is doc...Please keep the on going journal going...<BR/>It is documenting all...And it keeps a lifeline out there as well....<BR/>I know of no answers but read and hope for solutions...<BR/>The fact that KayTar could hold a straw is a huge milestone...Pendullumhttps://www.blogger.com/profile/11833881250780345533noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-39643986485215982022007-07-16T07:30:00.000-05:002007-07-16T07:30:00.000-05:00Oh Kyla-I can't imagine how frustrating, how tirin...Oh Kyla-I can't imagine how frustrating, how tiring, how frightening this must all be. Keep fighting the fight, keep noticing, and no, don't shut up. We want to be here for you on your journey.Chaotic Joyhttps://www.blogger.com/profile/16743049921159926147noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-57350607459736582662007-07-16T00:48:00.000-05:002007-07-16T00:48:00.000-05:00Don't ever feel like you are pestering the doctors...Don't ever feel like you are pestering the doctors with your questions about KayTar. You are right to keep track of all of this and tell them about it. The more they know, the better they'll be able to diagnose something. You are just following your instincts and your insticts are good.<BR/><BR/>I just hope and pray you get some answers soon.Cristinahttps://www.blogger.com/profile/07245436504933052526noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-79695770217335139692007-07-15T19:28:00.000-05:002007-07-15T19:28:00.000-05:00You need to keep writing about this, keep being op...You need to keep writing about this, keep being open about it. This isn't complaining - it's worry and fear and love. It's motherhood.Beckhttps://www.blogger.com/profile/13953517447164263617noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-71278341466905762792007-07-14T15:08:00.000-05:002007-07-14T15:08:00.000-05:00Keep calling your doctor and telling him what's go...Keep calling your doctor and telling him what's going on. You never know what piece of information, however small, might lead to the answer you're looking for...<BR/><BR/>I can't even imagine how hard and frustrating this must be for you ... <BR/><BR/>sending you positive thoughtsewe are herehttps://www.blogger.com/profile/13339650361453626546noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-86266850545969502982007-07-14T09:36:00.000-05:002007-07-14T09:36:00.000-05:00oh, sister. i would notice everything. every tiny ...oh, sister. i would notice everything. every tiny blink. every sigh. i would freak out. i would not know how to handle it. and then i would come to you for wisdom and grace because indeed, friend, you are full of it. i don't know how you stop talking about this. i would never stop talking about this. but i fear i'd not be talking about it as well as you do. and that alone is amazing. <BR/><BR/>you are doing exactly what you should be. what else is there to do?Girlplustwohttps://www.blogger.com/profile/07056576921114387218noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-34871395237309822912007-07-14T07:27:00.000-05:002007-07-14T07:27:00.000-05:00she has such a beautiful face. never look away. ...she has such a beautiful face. never look away. you are so good to her, and all your documentation, while tedious for you, is good, good, good. we all want answers for you soon. that kaytar has wedged her way into our hearts. as have you.<BR/><BR/>{{hugs}}Christinehttps://www.blogger.com/profile/04662448292809451387noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-3621802052787050012007-07-14T05:08:00.000-05:002007-07-14T05:08:00.000-05:00Please do keep writing. You're on a hard road. We'...Please do keep writing. You're on a hard road. We're here for you. <BR/><BR/>You asked, "Does it even matter what it is?" I think you're right to err on the side of caution.WarriorMomhttps://www.blogger.com/profile/10445220100886614461noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-78658267496565268582007-07-14T00:46:00.000-05:002007-07-14T00:46:00.000-05:00Dont stop documenting. Every little bit of inform...Dont stop documenting. Every little bit of information helps the professionals potentially see a pattern. Its a big puzzle, and every bit of info you have and can give the doctors is a piece that fits somewhere. Soon hopefully there will be enough pieces together so that they can start trying to work out WHAT the picture is, as opposed to randomly stabbing in thin air. Hang in there, I truely admire what you are doing, you seem to be a most awesome mother who cares very deeply for both of her children.Tassiegalhttps://www.blogger.com/profile/01937005091364457746noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-47910385881216128652007-07-13T23:28:00.000-05:002007-07-13T23:28:00.000-05:00I am SO sorry that you are feeling the weight of K...I am SO sorry that you are feeling the weight of KayTar's issues so fully today. It is absolutely heartbreaking to watch your child go through these things and for no one to have a solid answer. We did it for 4 years before getting a diagnosis, and still most Docs can't agree that all of Bugga's issues were caused by the diagnosis. We know better now, and they are. That's beside the point.....<BR/> What I'm trying to say, is that I understand where you are coming from. And you're right, it is SO HARD. I wish there was an answer NOW for you. <BR/> I've been reading here long enough to know that you are absolutely THE BEST advocate for your daughter. No one could do a better job of searching for answers and seeking out help for her, than you have done and continue to do.<BR/> I also know that one of the things that helps me to deal.....is to have days like you're having today where you really feel it. You allow yourself to appreciate the suckiness of the situation. You let yourself be sad, maybe a little mad, and really ponder how difficult this really is. You have a great attitude all of the time. That's tough to maintain. You are more than allowed a day to just be.....*hmphf* about the whole thing once in awhile. Sometimes this path just SUCKS. It's okay to say IT SUCKS!!!!<BR/> I admire you Kyla. I was barely able to get myself out of bed and to work most days when I was your age. And here you are, with two beautiful, wonderful kids, and you and Josh are doing an incredible job of raising them both. I've never once witnessed you sticking your head in the sand over KayTar's issues. You've taken this whole thing on with courage and strength. You are a fantastic Mama Kyla. Remember to allow yourself down days. Your life is very different than you probably thought it would be. It takes a long time to come to terms with all of it. There are little losses all the time. But you and I both know that the gains that happen alongside them, are HUGE and fun and a reason to celebrate! I also admire your ability to always find positive even when you're feeling bad. And that face? Is the face of a little pumpkin who needs a KISS smack-dab on her forhead. *Mwah*<BR/> I'm going to dive in and get caught up on some reading here. My computer time has been limited severely by summertime, and I need to know about the drop attacks. That is a symptom of ACM1 that we know VERY well.Sonia Wetzel Photographyhttps://www.blogger.com/profile/05075315979465608558noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-39733976861240476152007-07-13T22:20:00.000-05:002007-07-13T22:20:00.000-05:00Kyla, read what everyone here has written and know...Kyla, read what everyone here has written and know that there is never a need to shut up about it. You need to write, you need to document, you need to notice because it's part of the role that you play and one of the ways that you are helping her. We're here to listen.NotSoSagehttps://www.blogger.com/profile/04782162947524115936noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-31622793840642650002007-07-13T21:28:00.000-05:002007-07-13T21:28:00.000-05:00Definitely keep going- what is she has a baby like...Definitely keep going- what is she has a baby like her? She'll need to know all this. Is it possible she is having a sensory reaction? (My son is autistic, so I see sensory issues all day.) Were the lights in the room fluorescent? Fluorescent lights flicker at a speed that we usually don't notice but kids with sensory problems can see it- thus the blinking. Or it could be stress, my son does a lot quirky stuff to cope with stress. <BR/>I'm certainly not saying she could be autistic, because uh, she SO isn't! but she could have sensory issues separately...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-34669431382695529782007-07-13T18:27:00.000-05:002007-07-13T18:27:00.000-05:00Oh honey of course you notice. How could you look ...Oh honey of course you notice. How could you look into that sweet little face and not notice? She's yours and you know her like you know yourself and you just want to know what the hell is going on. Don't shut up, not for her sake, not for yours, not ever.flutterhttps://www.blogger.com/profile/11828689769747130419noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-83780987301280127462007-07-13T17:58:00.000-05:002007-07-13T17:58:00.000-05:00(((((HUGS))))) Kyla, you are an amazing mother an...(((((HUGS))))) Kyla, you are an amazing mother and woman. Kaytar is sooo lucky to have you as a mom. And like the others have said, don't shut up or anything of the sort. I am sure these clues that you keep getting will hopefully one day (very soon?) get the answers you have all been looking for. Take care Kyla!Kellyhttps://www.blogger.com/profile/02868084784014157064noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-2731869124582730872007-07-13T17:52:00.000-05:002007-07-13T17:52:00.000-05:00Oh boy... i watch too - i note all the little thin...Oh boy... i watch too - i note all the little things - i feel like i am trying to solve a puzzle (a different puzzle to yours, but a puzzle nonetheless). keep documenting - maybe take a note of something you notice and then try to push it out of your head so it doesn't overwhelm you too much... (((hugs)))Emhttps://www.blogger.com/profile/17574688179517054558noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-7578602946982369752007-07-13T17:32:00.000-05:002007-07-13T17:32:00.000-05:00Ditto, don't shut up! The only way to get answers ...Ditto, don't shut up! The only way to get answers is to keep asking. I know it is frustrating for you.... Sending many hugs!!!TxGambithttps://www.blogger.com/profile/00752540661719905305noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-10474450831286312562007-07-13T15:26:00.000-05:002007-07-13T15:26:00.000-05:00I find that talking about things always makes me f...I find that talking about things always makes me feel better. If I just get things "out there", I am so much more calm than when they're stewing in my head. Don't stop asking questions, or noticing every little thing. And don't stop talking about them.Run ANChttps://www.blogger.com/profile/06088821030860597465noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-54034469831418496812007-07-13T15:18:00.000-05:002007-07-13T15:18:00.000-05:00You're her mommy. You love her more than life its...You're her mommy. You love her more than life itself. There is a burden that comes with this love and that is noticing each and every thing that doesn't seem normal. It's good that you notice these things, document them and share them in hopes of finding an answer. If nothing else, it's just one more example of the tremendous love you have for your daughter. As KayTar grows older, that is something she'll never have to doubt.~aj~https://www.blogger.com/profile/01960895390340332054noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-57170903310373450132007-07-13T13:05:00.000-05:002007-07-13T13:05:00.000-05:00I don't think you are making it harder on yourself...I don't think you are making it harder on yourself, I don't think you are pestering the pediatrician, and I don't know how you do it sometimes. I think your incredible power of observation is a blessing. KayTar (and all the Tars) are lucky to have you. I get sad reading a post like this because I can hear the stress in your words. And at the same time I admire how strong you are. You are an amazing person Kyla.motherbumperhttps://www.blogger.com/profile/16053978199395919666noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-59505066485983397262007-07-13T12:11:00.000-05:002007-07-13T12:11:00.000-05:00Oh, please, no, no, no! Don't shut up about it. ...Oh, please, no, no, no! Don't shut up about it. It's so important to document it all, for your sanity, for her health. It's all good. It's also helpful to read about how sometimes doctors don't know all of -- or any of -- the answers. And if there's someone who has a baby with symptoms like KayTar's, and she finds you, this will be ever so helpful for her.<BR/><BR/>Plus, we all want to hear about what's going on with that darling girl!Shttps://www.blogger.com/profile/05602868040771218507noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-40728142362474007262007-07-13T10:16:00.000-05:002007-07-13T10:16:00.000-05:00Close your eyes Kyla. It won't make the scary stuf...Close your eyes Kyla. It won't make the scary stuff go away, but it might give you a chance to catch your breath. Sending you hugs in such a way that you have to close your eyes, even if for a minute.Katiehttps://www.blogger.com/profile/07682901624636941122noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-91951860743363551042007-07-13T09:19:00.000-05:002007-07-13T09:19:00.000-05:00Oh Kyla. I want you to get some answers already. ...Oh Kyla. I want you to get some answers already. <BR/><BR/>I'm sorry you've had a rough week. But don't you dare "shut up". <BR/><BR/>Maybe the pedi should read your blog too LOL.Kristinhttps://www.blogger.com/profile/06236801550420049457noreply@blogger.com