tag:blogger.com,1999:blog-4466533746136321142.post1101810805786690015..comments2023-09-01T06:41:19.340-04:00Comments on Undiagnosed but Okay: Being okay doesn't mean being satisfiedAnonymoushttp://www.blogger.com/profile/05615930943939757293noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-4466533746136321142.post-60364855691549735692014-07-03T18:55:28.173-04:002014-07-03T18:55:28.173-04:00This is totally awesome! What a wonderful latechri...This is totally awesome! What a wonderful latechristmas, happy new year phone call you guys will be having! And I can't wait to read all about it!West Kentucky Momhttps://www.blogger.com/profile/15790963302809013681noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-65828131021883749062014-07-02T15:28:19.920-04:002014-07-02T15:28:19.920-04:00Well, Stranger on the Internet...thank you. Thank ...Well, Stranger on the Internet...thank you. Thank you so much for letting me know you are there. That although your child might not be Boo you understand how important it is to know. To get it that medicine is fluid and up to interpretation. Your story is so cool. that you knew a child like Boo a mystery who wasn't one eventually. Thanks for stopping by and adding to my hope!Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-31605874793406286382014-07-02T15:25:27.204-04:002014-07-02T15:25:27.204-04:00I know, right? Six months is a cake walk. I am thi...I know, right? Six months is a cake walk. I am thinking of repeat offenders who say yeah I can go back in. What's six months compared to the life sentence. Of course every freaking day will be marked on the calendar until I can call the Doc and be all cool and say I was just wondering...<br />Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-14967215799506731572014-07-02T15:23:14.340-04:002014-07-02T15:23:14.340-04:00Thanks, Holly. I hear it was quite exciting in the...Thanks, Holly. I hear it was quite exciting in there yesterday :) Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-75798066952140335722014-07-02T15:21:21.050-04:002014-07-02T15:21:21.050-04:00Thanks, Dana. It is thrilling for sure. A little s...Thanks, Dana. It is thrilling for sure. A little scary. But more thrilling.Anonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-41899159965439609142014-07-02T15:06:22.344-04:002014-07-02T15:06:22.344-04:00I'm just a stranger on the internet, but I beg...I'm just a stranger on the internet, but I began reading your blog because I was working with a child who came to a diagnosis of 'mosaic angelman's syndrome' while she was under my care, and she reminded me an enormous amount of Boo. <br /><br />This child's doctors were reluctant to test her for Angelman's because although she was significantly delayed, she was light years ahead of a typical Angelman's child- at age four she spoke in two or three word utterances. The test was positive for angelman's as a mosaic (partially expressed) syndrome. This explained why she filled some of the criteria but not others. The diagnosis didn't inform her treatment or therapy that much, but it was helpful for everyone involved to have 'an answer' of sorts.<br /><br />I suppose I just wanted to share an anecdote that sometimes our 'mystery children' who have baffled Drs for years can come to a diagnosis. It does happen, and you are not foolish to press for one.<br /><br />All my love. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-46220449907889061032014-07-02T12:41:17.463-04:002014-07-02T12:41:17.463-04:00Oh Kerri this is HUGE. I hope you get more answers...Oh Kerri this is HUGE. I hope you get more answers (six months seems like a long time to wait until I remember you've been looking for answers for FIVE YEARS). I love that she agreed everything about Boo is Important. I love it, and good job to you for making the trip, for breathing, and big awesomeness that is T for reaching out to you. Kristi Campbellhttp://www.findingninee.comnoreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-66449137521898965612014-07-01T17:37:25.523-04:002014-07-01T17:37:25.523-04:00happy to see David & the girls today, wanted t...happy to see David & the girls today, wanted to ask about the appointment but figured this way is better, thanks for the update, glad you are pointed in the right direction:)Anonymoushttps://www.blogger.com/profile/14115586792856936807noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-20213840405937407672014-07-01T15:00:19.759-04:002014-07-01T15:00:19.759-04:00Wow - this is BIG. I'm so thrilled for you and...Wow - this is BIG. I'm so thrilled for you and your family, Kerri. Please keep us updated as you find out more!Dana @ Kiss my Listhttps://www.blogger.com/profile/12909181714814693849noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-60076801673086949292014-07-01T08:55:15.139-04:002014-07-01T08:55:15.139-04:00Thank you, Christine. It really was an eye openerThank you, Christine. It really was an eye openerAnonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-35038604039071218912014-07-01T08:51:07.178-04:002014-07-01T08:51:07.178-04:00Thanks, Julie. I know I was dumbfounded. That this...Thanks, Julie. I know I was dumbfounded. That this Doctor took almost 2 hours and that was just seeing Boo. That doesn't count the time she spent before the appointment reviewing all of her records. She walked into the appointment with all of Boo's med history in her head. AmazingAnonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-22434804491334506142014-07-01T08:50:58.948-04:002014-07-01T08:50:58.948-04:00WOW!! The things that can be done thanks to the i...WOW!! The things that can be done thanks to the internet! I'm so glad you have found a doctor who listens, observes, and is honest with you. Christinehttps://www.blogger.com/profile/17209807996463889703noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-12495401011327683092014-07-01T08:48:12.347-04:002014-07-01T08:48:12.347-04:00Thanks, Janine. It is quite amazing the difference...Thanks, Janine. It is quite amazing the difference one person can make in your day. That "T" took the time out of hers...amazingAnonymoushttps://www.blogger.com/profile/05615930943939757293noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-41031677604379688202014-07-01T07:55:02.118-04:002014-07-01T07:55:02.118-04:00Oh what AWESOME news, Kerri!!! I can't wait t...Oh what AWESOME news, Kerri!!! I can't wait to hear more. Seriously, her hugging is important? Makes me wonder if Luke's climbing is important? We have always said there is something more going on with him than just autism. I am very happy for you!!!Anonymoushttps://www.blogger.com/profile/13601329296517304013noreply@blogger.comtag:blogger.com,1999:blog-4466533746136321142.post-63582549213941267802014-07-01T07:26:39.718-04:002014-07-01T07:26:39.718-04:00This totally made me smile this morning and so gla...This totally made me smile this morning and so glad that you found a doctor that is not only willing, but quite possible able to help figure out what may be ailing Boo. It is amazing how when you share socially nowadays that someone out there may be able to point you in the right direction. Just glad there is hope!! :)Janine Huldiehttps://www.blogger.com/profile/00226958154244023407noreply@blogger.com