tag:blogger.com,1999:blog-33281653.post4241500978764574483..comments2023-09-04T11:20:08.804-05:00Comments on Life with the 'Tars: A Watched Pee Bag Never FillsKylahttp://www.blogger.com/profile/03311014761113076785noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-33281653.post-66035763835125514692007-10-14T17:30:00.000-05:002007-10-14T17:30:00.000-05:00Good night. It's even more exhausting reading it ...Good night. It's even more exhausting reading it that hearing it first hand. Josh deserves a medal. (Not just the one made of vomit.)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-43256320473161331312007-10-14T08:54:00.000-05:002007-10-14T08:54:00.000-05:00I'm so glad that the paediatrition was right on th...I'm so glad that the paediatrition was right on the money. I'm so sorry that the waiting game continues.<BR/>BEst wishesAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-56185400429665814422007-10-13T08:24:00.000-05:002007-10-13T08:24:00.000-05:00I had a dream last night that you stopped your blo...I had a dream last night that you stopped your blog because your "journey" was complete and you found your answers. Although I do hope you found your answer for Kaytar, you better keep up the blog! So weird I was dreaming about it, though! I think I read this just before I went to bed.Juliehttps://www.blogger.com/profile/02672442441423629410noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-29710803457301986572007-10-12T22:40:00.000-05:002007-10-12T22:40:00.000-05:00Your strength and maturity never fails to amaze me...Your strength and maturity never fails to amaze me.<BR/><BR/>And Kaytar. What a trooper.<BR/><BR/>And will answers come soon?crazymummahttps://www.blogger.com/profile/04663148723513574331noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-15634049724659708242007-10-12T20:56:00.000-05:002007-10-12T20:56:00.000-05:00Atypical or not, she may still respond to treatmen...Atypical or not, she may still respond to treatment, right?<BR/><BR/>I am holding you and her in my thoughts.Shttps://www.blogger.com/profile/05602868040771218507noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-45782485335564430332007-10-12T16:09:00.000-05:002007-10-12T16:09:00.000-05:00I won't uncross my fingers until you get some defi...I won't uncross my fingers until you get some definitive news.<BR/><BR/>I can definitely relate to the google frenzy--like I always say, I think I could have an honorary degree in medicine.Aliki2006https://www.blogger.com/profile/15763865834765963343noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-1908946651730711932007-10-12T12:21:00.000-05:002007-10-12T12:21:00.000-05:00Yall have been waiting for so long. Thankfully, ya...Yall have been waiting for so long. Thankfully, yall are getting in so quick for the LP. I hope and pray Kyla yall finally get some answers.<BR/><BR/>Thinking of you and Kaytar :)Amyhttps://www.blogger.com/profile/09869227309284462135noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-53831114966080980122007-10-12T11:06:00.000-05:002007-10-12T11:06:00.000-05:00Wow - what a saga. I hope you get more answers so...Wow - what a saga. I hope you get more answers soon.Magpiehttps://www.blogger.com/profile/15460136246441367993noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-62879613500991576992007-10-12T09:28:00.000-05:002007-10-12T09:28:00.000-05:00I'm sorry that you will have to wait a bit longer ...I'm sorry that you will have to wait a bit longer to hear the news, when shall you get the information? I hope all goes well Kyla! Give Kaytar a big hug for me! She's such a brave girl for having to put up with those sorts of tests so young.jhttps://www.blogger.com/profile/05665566227297863569noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-8038509945682292222007-10-12T08:59:00.000-05:002007-10-12T08:59:00.000-05:00"DO NOT GOOGLE THIS", my weary nurse-practioner al..."DO NOT GOOGLE THIS", my weary nurse-practioner always says to me. <BR/>Best wishes - this all sounds so very hard.Beckhttps://www.blogger.com/profile/13953517447164263617noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-8463811937589775922007-10-12T07:55:00.000-05:002007-10-12T07:55:00.000-05:00Well, it sounds like you've got the right genetici...Well, it sounds like you've got the right geneticist . . . I really hope you're closing in on what's going on so you can start to try and treat it!<BR/><BR/>And I'm a Google-holic, too. Enlightening and scary, all at the same time!ewe are herehttps://www.blogger.com/profile/13339650361453626546noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-51764055782997437812007-10-12T07:15:00.000-05:002007-10-12T07:15:00.000-05:00Alas, more waiting. But, man, you have a good head...Alas, more waiting. But, man, you have a good head on your shoulders!cinnamon gurlhttps://www.blogger.com/profile/05363288586285868779noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-33680702338550569662007-10-12T02:09:00.000-05:002007-10-12T02:09:00.000-05:00I admire you so much. And I know you're going to ...I admire you so much. And I know you're going to read that and instantly brush it off, but it's true and you can just say to yourself "I AM admirable", and save me a lot of arguing with you. ;-)<BR/><BR/>I will wait patiently over here. Good for you for not hanging all your hopes on that diagnosis, and for looking at the symptoms as they really are and not trying to fit her into a category where she might not quite fit. GOOD FOR YOU!! I am very, very impressed with your Geneticist as well for acknowledging that she doesn't fit exactly, but for looking hard and seeing that she might fit in reference to those other two case presentations.<BR/><BR/>So I'm waiting. Patiently. And I'm sending all of you big loves, hugs and squeezes while you wait too. Can I mail you some pumpkin whoopie pies?Sonia Wetzel Photographyhttps://www.blogger.com/profile/05075315979465608558noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-13748936657280890892007-10-12T00:21:00.000-05:002007-10-12T00:21:00.000-05:00Once more, I shake my head in absolute amazement a...Once more, I shake my head in absolute amazement at your steadiness, your super smartness, and your general awesomeness. I will be thinking about you all ...Mimihttps://www.blogger.com/profile/10812707312289852258noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-5320185517660116292007-10-11T23:06:00.000-05:002007-10-11T23:06:00.000-05:00you never cease to amaze me with your graceful hea...you never cease to amaze me with your graceful heart. <BR/><BR/>am thinking of you guys.Girlplustwohttps://www.blogger.com/profile/07056576921114387218noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-83134600511897644772007-10-11T22:52:00.000-05:002007-10-11T22:52:00.000-05:00Kyla, I'm just so impressed with the knowledge you...Kyla, I'm just so impressed with the knowledge you now have on all of this "stuff" and am equally impressed with your amazing doctors. I'm so glad to know no one is forcing a diagnosis on KayTar. I hope you are able to get some real answers soon. It's all very exciting.<BR/><BR/>And wormy is just adorable!~aj~https://www.blogger.com/profile/01960895390340332054noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-16706938818185140012007-10-11T22:45:00.000-05:002007-10-11T22:45:00.000-05:00I am with you, holding your hand and praying soft ...I am with you, holding your hand and praying soft words for your baby girl.flutterhttps://www.blogger.com/profile/11828689769747130419noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-82686208032698004552007-10-11T21:44:00.000-05:002007-10-11T21:44:00.000-05:00Strangely enough, I like Google BECAUSE it gives m...Strangely enough, I like Google BECAUSE it gives me the worst case scenario. At least I know what I'm dealing with.<BR/><BR/>Cautiously optimistic seems to be the theme here. I'll be thinking of you guys and sending good thoughts your way. You're one step ahead with all the research you do AND a doctor who seems to "get it". Keeping my fingers crossed.Run ANChttps://www.blogger.com/profile/06088821030860597465noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-84079815072416433322007-10-11T21:35:00.000-05:002007-10-11T21:35:00.000-05:00I still have my fingers crossed too but it truly d...I still have my fingers crossed too but it truly does sound promising.<BR/><BR/>And I'm a cyberholic too. I've learned to back away from google because I self diagnosis EVERYTHING. Wrongly I might add.<BR/><BR/>Sending positive thoughts.MamaGeek @ Works For Ushttps://www.blogger.com/profile/09563543041234527282noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-10205438232935877402007-10-11T20:40:00.000-05:002007-10-11T20:40:00.000-05:00Okay, perhaps this is a stupid question...but why ...Okay, perhaps this is a stupid question...but why not just skip the LP and do the phenylaline infusion "test"? Just curious on that one since it sounded pretty defenitive itself.<BR/><BR/>And I know you were starting to be less than hopeful after reading about DRD initially. I'm so glad there are people out there who know to look for unusual presentations so you guys can figure out how to help sweet KayTar. <BR/><BR/>Looking forward to more and kudos to Josh on the yak-attire. Jason takes off his work clothes as soon as he comes home thanks to my little spewers.Kristinhttps://www.blogger.com/profile/06236801550420049457noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-50904136671130892502007-10-11T20:16:00.000-05:002007-10-11T20:16:00.000-05:00hmmmm well even though this isn't exactly a sure t...hmmmm well even though this isn't exactly a sure thing I'm glad it's something. Waiting for the pee sounded like torture!Junie's Bloghttps://www.blogger.com/profile/02227880461501446699noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-5767331030622179002007-10-11T20:08:00.000-05:002007-10-11T20:08:00.000-05:00It sounds like the doctors are all trying to do th...It sounds like the doctors are all trying to do the right thing and at least that is a comfort.InTheFastLanehttps://www.blogger.com/profile/09691830067979224059noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-69906405860549707592007-10-11T19:27:00.000-05:002007-10-11T19:27:00.000-05:00Man can I relate to the google freakout possibilit...Man can I relate to the google freakout possibilities. I can also relate to standing around for hours waiting on a urine bag to fill! I'm impressed that they're getting on the lumbar test so soon, and that you've got top dudes in the country talking about Kaytar's case, all very good signs. Maybe you'll get those EEG results soon now that you've got this stuff going on. Nursing school will seem like a walk in the park after all you've learned these past 2 years.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-6833048868727682762007-10-11T19:26:00.000-05:002007-10-11T19:26:00.000-05:00Oh wormy is adorable. Sounds promising and that th...Oh wormy is adorable. <BR/>Sounds promising and that the treatment can only help. Keeping my fingers crossed. Atypical or not it is pretty incredible that this can be treated. <BR/><BR/>I'm reading through a list of proteins here myself and wondering if the elusive 'they' will manage to find a treatment for Julia in her lifetime. <BR/>Man its hard to type with all your fingers crossed.moplanshttps://www.blogger.com/profile/16998309937928231527noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-40697465869185866442007-10-11T18:01:00.000-05:002007-10-11T18:01:00.000-05:00See, this is why you are levelheaded. Every bit of...See, this is why you are levelheaded. Every bit of that post made perfect sense, right down to the blah big circle part ;)<BR/><BR/>My hope is in God's hands. Kaytar has the most amazing momma to watch her back, so I figure she already got a pretty amazing plan ahead of her.Katiehttps://www.blogger.com/profile/07682901624636941122noreply@blogger.com