tag:blogger.com,1999:blog-33281653.post6161261381172349915..comments2023-09-04T11:20:08.804-05:00Comments on Life with the 'Tars: Now with more angst!Kylahttp://www.blogger.com/profile/03311014761113076785noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-33281653.post-684931209912339922007-11-14T18:14:00.000-06:002007-11-14T18:14:00.000-06:00Oh Kyla. I feel your pain so acutely that I'm rig...Oh Kyla. I feel your pain so acutely that I'm right back to feeling it myself 3,4 and 5 years ago. It is physically painful to remember that. I am so sorry for your pain. I am so sorry that you didn't get the answer you'd hoped for.<BR/><BR/>Please don't let go of hope. I believe with everything in me that you WILL have an answer. This just wasn't it. And you're so right, who wouldn't have held onto the hope that this possible diagnosis was a fit, when it could be treated with a pill. What parent of a special needs kiddo wouldn't give the earth to have an answer like that? Again, I'm so sorry this wasn't it Kyla. <BR/><BR/>Cry your eyes out for as long as you need to. We are thinking about you, every day, and you are in my prayers at night.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-36115044734998001912007-11-13T18:45:00.000-06:002007-11-13T18:45:00.000-06:00Oh, Kyla. I'm so sorry. This is so terribly unfa...Oh, Kyla. I'm so sorry. This is so terribly unfair, to be so close and then to have it all ripped away.<BR/><BR/>I think you're right about taking a break from the doctors at this point. Step back until the New Year, focus on the insurance crisis (that shouldn't be, d*mn Congress),. and then go from there.<BR/><BR/>Hugs.ewe are herehttps://www.blogger.com/profile/13339650361453626546noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-81307044951038726482007-11-09T18:02:00.000-06:002007-11-09T18:02:00.000-06:00I am so sorry. It would be easier to have a diagn...I am so sorry. It would be easier to have a diagnoses. So so so sorry.Sarahhttps://www.blogger.com/profile/06568095510365381346noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-51416639369804060022007-11-09T12:44:00.000-06:002007-11-09T12:44:00.000-06:00Oh Kyla, I just want to come over and give you a b...Oh Kyla, I just want to come over and give you a big hug. Except I don't know where you live. Also, I have a cold.<BR/><BR/>Crap on a crap cracker, my friend. Don't be mad at yourself. Anyone would want an easy solution to take away the frustration of all you guys have been though. It would make it so much easier if you just knew that you had done everything you could to make things better for Kaytar but you aren't even given that grace. I can tell you though that you've gone above and beyond what many parents would and while Kaytar has her struggles she also has a beautiful happiness and strength in her and that's something that comes from you and your family. You may not have found the perfect drug to make her all better but you have managed to create the perfect environment to allow her to grow and bloom into a sweet, happy child despite of the hardships that she's faced.<BR/><BR/>And for that you should be proud not just of her, but also of yourself.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-76431050889792734512007-11-09T03:27:00.000-06:002007-11-09T03:27:00.000-06:00wishing I could help...wishing I could help...Run ANChttps://www.blogger.com/profile/06088821030860597465noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-60149242134163830722007-11-09T01:04:00.000-06:002007-11-09T01:04:00.000-06:00I love you, and I am so so sorry. I feel so mad an...I love you, and I am so so sorry. I feel so mad and helpless to make it better for you and yours.flutterhttps://www.blogger.com/profile/11828689769747130419noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-64102228755811539212007-11-09T00:05:00.000-06:002007-11-09T00:05:00.000-06:00i'm so sorry... i know just how it feels to have a...i'm so sorry... i know just how it feels to have a possible diagnosis within reach and then to have ripped from you... willow's problems are less complex than kaytar's but i don't think we'll ever get a diagnosis... and i still find that hard to accept...<BR/><BR/>emxxEmhttps://www.blogger.com/profile/17574688179517054558noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-51245252435438819082007-11-08T21:03:00.000-06:002007-11-08T21:03:00.000-06:00I am so sorry that there are no answers. I guess ...I am so sorry that there are no answers. I guess sometimes we just don't know. Hugs for you all.InTheFastLanehttps://www.blogger.com/profile/09691830067979224059noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-7400025554584543072007-11-08T19:19:00.000-06:002007-11-08T19:19:00.000-06:00Oh Kyla! I'm so sorry. There's absolutely nothi...Oh Kyla! I'm so sorry. There's absolutely nothing to say. I'm reaching across cyberspace with a hug and a shoulder to cry on! Will continue praying for you.PJhttps://www.blogger.com/profile/10630048078969557476noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-20074459783455006642007-11-08T18:00:00.000-06:002007-11-08T18:00:00.000-06:00Don't beat yourself up for hoping; where we any of...Don't beat yourself up for hoping; where we any of us be without it? <BR/><BR/>I'm sorry.Janethttps://www.blogger.com/profile/00567374243896229606noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-82496301088834793052007-11-08T17:34:00.000-06:002007-11-08T17:34:00.000-06:00Kyla. Honey. I am so sorry. It is as hard to lose ...Kyla. Honey. I am so sorry. It is as hard to lose hope as to lose something more tangible, I know. But I know you do and will do what you know to be best for your girl, whether that means pulling back or pressing on. And I hope that you get the support that you need to cover whatever she needs, insurance-wise. Or else? You could always move up here... We'd welcome you with open arms. She same ones sending you hugs now.kittenpiehttps://www.blogger.com/profile/05215443551546036909noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-38055575884268940942007-11-08T16:55:00.000-06:002007-11-08T16:55:00.000-06:00I know how disappointed I feel, but I can't imagin...I know how disappointed I feel, but I can't imagine how much more magnified it must be for you. Don't feel bad for letting it all out yesterday...that's a lot of frustration for one person to bear.<BR/><BR/>Impossible to know what lies ahead for KayTar, but I hope that in the midst of all of it, she will be a happy, content little girl. That's what is truly important in life!AJhttps://www.blogger.com/profile/13749428260911929787noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-75121165009439906282007-11-08T16:28:00.001-06:002007-11-08T16:28:00.001-06:00I'm sorry sweetie. It's hard to hear an answer li...I'm sorry sweetie. It's hard to hear an answer like, "We don't know." It happens more than you know, not that it's any comfort right now. <BR/><BR/>It's hard to accept a "broken" kid, not that I think she's broken. I spent years looking for answers with my daughter and found none. Finally, one day, I realized, this is it. This is how she is. It's still hard and she still surprises me. But when all is said and done, I love my daughter, just as she is.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-80233516441526993352007-11-08T16:28:00.000-06:002007-11-08T16:28:00.000-06:00I'm so sorry Kyla.I'm so sorry Kyla.metro mamahttps://www.blogger.com/profile/00461160881873679783noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-86203583204704103262007-11-08T16:06:00.000-06:002007-11-08T16:06:00.000-06:00I can only imagine the frustration and sadness tha...I can only imagine the frustration and sadness that you are feeling. <BR/>It seemed like you were so, so close and then to be back to square 1 just sucks. I am so sorry : (Amyhttps://www.blogger.com/profile/09869227309284462135noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-69189255883466028852007-11-08T13:23:00.000-06:002007-11-08T13:23:00.000-06:00Thanks for the clarification Kyla. If only it was...Thanks for the clarification Kyla. If only it was that 'simple', right? I can't even begin to imagine how much not knowing sucks. As much as *I* wish they could figure out what was going on, I know that it doesn't even scratch the surface of how much *you* guys want to know. I'll keep lurking around (!) and hoping that an answer will be found for your little cutie.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-79959938628782186222007-11-08T13:21:00.000-06:002007-11-08T13:21:00.000-06:00Kyla. This post just kills me. If it's any comfo...Kyla. This post just kills me. If it's any comfort, I'm crying too.Beahttps://www.blogger.com/profile/15957626443087438904noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-22745233823978581882007-11-08T13:15:00.000-06:002007-11-08T13:15:00.000-06:00Oh, I'm sorry, sorry, sorry.Oh, I'm sorry, sorry, sorry.Beckhttps://www.blogger.com/profile/13953517447164263617noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-65887231620394501102007-11-08T13:09:00.000-06:002007-11-08T13:09:00.000-06:00oh Kyla. I am sick sick sick over this. I don't wa...oh Kyla. I am sick sick sick over this. <BR/>I don't want you to lose hope or insurance. <BR/>I am sending you new hope that KayTar will continue to improve and that after your three week break you will all feel better. <BR/>And some more smarties. I wish I could send some medical benefits to go with them.moplanshttps://www.blogger.com/profile/16998309937928231527noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-53583483973508010042007-11-08T12:37:00.000-06:002007-11-08T12:37:00.000-06:00Karen: That was true only for the gene test. The w...Karen: That was true only for the gene test. The was a retesting of her spinal fluid. The initial findings that led them to this diagnosis are not present, meaning it was likely a lab artifact of some sort. <BR/><BR/>I wish, though. I do.Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-56269880088187281022007-11-08T12:33:00.000-06:002007-11-08T12:33:00.000-06:00Hi Kyla, A bad day to delurk but I just wanted to ...Hi Kyla, A bad day to delurk but I just wanted to say that I am so sad that KayTar's dianosis wasn't what you (and we all here in the blogosphere) hoped it would be. In your previous post you said that 20% of the kids that get the genetic testing don't test positive for the abnormality anyway (I think that's what you said) so is there any possibilty that she is just in the 20%?? I'm sure that you and the doctor's already went over all this but that tidbit of info just seemed to stick out to me. I hope this doesn't come across as ass-y or anything because that is the absolute LAST thing I want it to be. Maybe more like a naive reader still clinging to hope that a simple answer is out their for a sweet little girl.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-65812145101579717942007-11-08T11:56:00.000-06:002007-11-08T11:56:00.000-06:00And just like that my heart broke in two.This is s...And just like that my heart broke in two.<BR/><BR/>This is so wrong. It shouldn't be. On so many levels.<BR/><BR/>I'm angry, sad, and mostly, so sorry.Shttps://www.blogger.com/profile/05602868040771218507noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-91776276316282215392007-11-08T11:51:00.000-06:002007-11-08T11:51:00.000-06:00I am so sorry that the answer isn't nice and neat....I am so sorry that the answer isn't nice and neat. I'm sorry that you have tears. I'm sorry.<BR/><BR/>It really shouldn't be happening this way.motherbumperhttps://www.blogger.com/profile/16053978199395919666noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-35951615319522469242007-11-08T11:43:00.000-06:002007-11-08T11:43:00.000-06:00Oh, Kyla. I'm so, so sorry.Oh, Kyla. I'm so, so sorry.mamatuliphttps://www.blogger.com/profile/02692442843330582571noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-80359789316109266342007-11-08T11:23:00.000-06:002007-11-08T11:23:00.000-06:00Ah, Sweet. My heart is breaking right now. For you...Ah, Sweet. My heart is breaking right now. For you. For her. For your boys. I wish I could come down there and put you on my lap and rock you to sleep and whisper "there, there. Everything will be ok" with all that maternal conviction we force ourselves to mutter.Madhttps://www.blogger.com/profile/13416585771017767796noreply@blogger.com