tag:blogger.com,1999:blog-4675590510792979183.post4256652864901222474..comments2024-03-28T04:11:32.480-04:00Comments on Uncommon Sense: Life, Undiagnosed (and how I've come to be ok with that)Danahttp://www.blogger.com/profile/11193445038085911249noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-4675590510792979183.post-21342907969108493962012-10-14T15:52:27.071-04:002012-10-14T15:52:27.071-04:00Hi Maya and Family
My name is Jenna and I came acr...Hi Maya and Family<br />My name is Jenna and I came across your site. Maya is a precious miracle, special gift, and beautiful princess She is a cute earthly angel. Maya is a smilen champ, inspirational hero, courageous fighter, and a brave warrior.<br />I was born with a rare life threatening disease, developmental delays, 14 medical conditions.<br />http://www.miraclechamp.webs.comJennahttp://www.miraclechamp.webs.comnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-28276392980873746352012-06-18T20:00:10.776-04:002012-06-18T20:00:10.776-04:00What a fabulous blog post! I could have written i...What a fabulous blog post! I could have written it myself. To have a child who is 'supreme' in vocabulary and receptive language, but can barely speak intelligibly, can't run 'properly', can't manage a pencil to write his name legibly...and no diagnosis...I wonder how many kids there are out there like ours. This affirms that my thoughts on diagnosis are not unique. Thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-62632367824622619272012-03-10T08:32:13.248-05:002012-03-10T08:32:13.248-05:00I stumbled across your blog some days ago and your...I stumbled across your blog some days ago and your posts rang a bell immediately when I started reading. <br /><br />We live in Germany. My son is 4 with developmental delays (e.g. he also almost does not speak yet) and undiagnosed, too. We did all possible genetics, chromosonal analyses, metabolism tests,... you name it. Nothing came out. <br /><br />I have to say that I am totally okay with that. Just as you stated in your post I was aware at a very early stage that having a diagnosis would not change anything. He is who he is and we have to help him the best possible way we can with regard to his abilities and the things he needs support with. No diagnosis would change that. <br /><br />I am sometimes sorry for the missing diagnosis when it comes to connecting with other parents (e.g. the parents of children with Down syndrome seem to me like a big family and I sometimes would like to belong to some kind of "family", too) but in the end it is okay the way it is.<br /><br />I am very interested in the iPad of Maya and the speech programme. Maybe we should try something like that as well for my son. Reading about your experiences made me think about that.<br /><br />Anyway, I just wanted to tell you that I like your blog and that I will be a follower from now on. I also already liked your page on Facebook.<br /><br />Have a wonderful day! :-)Beatenoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-46695084151210387342012-03-05T18:25:01.896-05:002012-03-05T18:25:01.896-05:00Thank you for blogging about this. My 5 month old...Thank you for blogging about this. My 5 month old has an interstitial deletion of 11q, and although it doesn't have a name because of it's rarity, it is a diagnosis. You write beautifully and I look forward to reading more. This is our little sweetie's blog: http://ryangrace11q.wordpress.com/Liznoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-26371316569487364192012-03-03T08:47:24.154-05:002012-03-03T08:47:24.154-05:00I remember how devastated I was when my daughter g...I remember how devastated I was when my daughter got her diagnosis at a month old. I hoped and prayed that genetics would not confirm it, but they did at 6 months (she's 10 months now). It wasn't until I started meeting families whose children were undiagnosed that I realized how blessed we are to just HAVE a diagnosis. Even though it's a dumping ground of a syndrome that has a huge spectrum and a buffet of medical issues to choose from, we have a starting ground. We have a support group. We worried about her being stereotyped with an official diagnosis, but she was being stereotyped already. With a trach and gtube, you bet she was being stereotyped! We have a very limited view of the future for her, but I realize now how nice it is to be able to have that "sound bite" as you put in your other post. <br /><br />I just discovered your blog yesterday and am loving it! Thank you for taking the time to put your thoughts down that are such an encouragement to other parents!Meganhttps://www.blogger.com/profile/11578454673778135275noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-32514741723717545912011-12-20T20:35:33.119-05:002011-12-20T20:35:33.119-05:00My child has a diagnosis but with it came me googl...My child has a diagnosis but with it came me googling and reading things no one wants to read about their child. Yes he is healthy, really very healthy but no one wants to read 100% of children are MR and what the range is and I can never ever take back reading that although I want to more than anything. So I can understand you want a diagnosis but like others have said it won't give you all the answers and it may give you some you do not want, ever.Elizabethhttps://www.blogger.com/profile/04013115624599272658noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-49545724256400218882011-12-06T14:35:55.656-05:002011-12-06T14:35:55.656-05:00I cried...I cried reading this post because I coul...I cried...I cried reading this post because I could've written it! Thank you! Thank you for voicing what I haven't been able to yet.LTuxhttps://www.blogger.com/profile/00221319500816041397noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-84586315469167161172011-12-01T10:24:19.085-05:002011-12-01T10:24:19.085-05:00You took the words out of my mouth. This is exact...You took the words out of my mouth. This is exactly how it feels to have a child who is undiagnosed. The good news is that no one puts the limitations on your kid that they do to a child who has a diagnosis. The bad news is you don't know if you are prepared enough for the future. But the bottom line is, even if your kid is "typical", you don't know what the future holds for them. Sometimes it just makes us that much more thankful for the present. Thanks for sharing!sarahsmileshttps://www.blogger.com/profile/02506648524064691422noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-61917297436637538532011-11-09T14:45:38.042-05:002011-11-09T14:45:38.042-05:00I'm back to you site after not having visited ...I'm back to you site after not having visited for sometime. I just read your post about No Diagnosis. <br />We have a medically fragile, medically complex child with global developmental delay, profound hearing loss and a list of medical conditions to long to elaborate here.<br />We have lived the medicaly odyssey of looking for a diagnosis. We have visited the top specialists and children's hospitals in Canada, and have taken our daughter to reputed facilities in the US looking for answers. <br />Our child has endured invasive medical tests and procedures to try and get answers. We never go them.<br />This week, on Monday, we had a meeting with out genetics doctor. He had found something after examining our child's DNA for the past year. He has confirmed that she has a rare disease that has not been seen before. It is a form of mitochondrial disease that is not yet defined or described in the medical literature. She is literally at this time, the only one in the world with this disease that we know of.<br /><br />Diagnosis does not bring answers. We have a label beyond 'undiagnosed' but it has not treatment, cure, disease progression or cure associated with it. We are no further ahead in what our future might hold.<br />Having said this, I still would be searching for a diagnosis to this day. I wanted it, and I needed it. I feel calmer/more settled having it. I don't feel like maybe there is something out there to cure her or fix her that we are missing. I have stopped part of my second guessing.<br /><br />I really enjoy your blog. <br />I have been considering starting my own - as a means to write about what is important and what I am feeling/seeing/living and to support other families (as you do with your Blog).<br /><br />Thank you for sharing. It means a lot to us.<br /><br />JulieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-27176172321416556702011-10-17T01:41:34.656-04:002011-10-17T01:41:34.656-04:00I'm reading this post on the even of our long ...I'm reading this post on the even of our long awaited 5 month in the making genetics consult. We've already had a normal chromosome test, microarray, CK test and so on and so forth. Our "formerly" blind son can now see and is kind of holding his head up. I came to your post because I too have been searching for The Diagnosis and at this point- it's 11:40pm at night and my husband is yelling for me to come to bed. Thank you for making me realize what a waste of time The Diagnosis is. I mean, I always knew it was a waste of time, but I think I needed to hear it from another mom who has been to our airport. xoMs. Ehttps://www.blogger.com/profile/04663456885188973274noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-43013493194773748932011-08-25T22:44:23.860-04:002011-08-25T22:44:23.860-04:00I love your blog as well. I have a 10 year daught...I love your blog as well. I have a 10 year daughter without a diagnosis. It is very frustrating. My support group is a group of parents with kids with very different disabilities. Keep believing in your sweet girl. Look how far she has come!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-52742825157195941812011-08-10T17:51:49.367-04:002011-08-10T17:51:49.367-04:00Thanks for the comments, all. I thought there mus...Thanks for the comments, all. I thought there must be other folks out there who feel the same way :) And welcome tot he enw visitors who came in via SWAN's FB post.Danahttps://www.blogger.com/profile/11193445038085911249noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-76346515889027518862011-08-10T11:07:56.781-04:002011-08-10T11:07:56.781-04:00This is exactly how we feel about our daughter. Sh...This is exactly how we feel about our daughter. She will be six in October and still no diagnosis for us. To receive special education services through the school system, they use "global developmental delay" but there's so much more to it than that. We know that we're doing everything we can to help our daughter to continue to make progress, but it is difficult at times not knowing what to expect for the future. We are just so thankful that she is a healthy and happy little girl! Thanks for sharing your story. :)<br /><br />KimKim Robertsnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-44875393651945923002011-08-10T10:31:46.567-04:002011-08-10T10:31:46.567-04:00Hi, great blog post. I run a support project in th...Hi, great blog post. I run a support project in the UK for families of children with undiagnosed genetic conditions - I'd love to reproduce this on our site and link to you if you're interested? I think lots of our families would love to read this. Let me know if you are interested on SWAN@geneticalliance.org.uk, take care, LaurenLaurenhttps://www.blogger.com/profile/14472992534297044385noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-51634819594227028492011-08-10T10:11:14.809-04:002011-08-10T10:11:14.809-04:00Hello, I came across your blog through a Facebook ...Hello, I came across your blog through a Facebook group on undiagnosed conditions. I have a 13 year old daughter who still doesn't have a diagnosis. It's nice to read about someone experiencing that and for me to think, 'I can relate to that!'. Best wishes to you and your daughter. Moira http://www.eurekastreet.com.au/article.aspx?aeid=24390Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-78078901937799585572011-08-10T10:02:26.696-04:002011-08-10T10:02:26.696-04:00Hi, just wanted to thank you for writing this. Im ...Hi, just wanted to thank you for writing this. Im blessed with 3 normal, healthy children, but I do understand how important a diagnosis can be. I know a couple, whose daughter (she's 12 now!), was born very premature, and she has some difficulties expected of premmie babies, shes got bad eyes, bad balance, slightly behind at school, and "dicky knees". She's always had bad knees, not that it stops her doing anything, really. You wouldn't know to look at her that they hurt, and that she sees physios several times a year. Last year, they saw a different specialist, and then another, and returning to work, her dad turned to me, and said "Maddie has cerabal palsy", and there were tears in his eyes (I didn't know then, but of happiness). I didn't know what to say, so I asked "well, what does that mean for her?". I know CP is a brain injury, I think, but thats about all I know. He turned and looked at me and said "It means she's the same as she was yesterday, but now she can get the help she needs". I didn't realise why sometimes labels can help, before this, but after listening for a while, hearing him say how they've had tests and specialists and all they could say is "she has dicky knees", for 11 years, to finally get some explanation and be able to access the right services, I get it now. I hope you get the answers you're looking for, but support, and your' daughters happiness, rate slightly higher than a label. xoxoxoxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-55535066774950900122011-08-05T10:49:03.573-04:002011-08-05T10:49:03.573-04:00I love this post. Glad you guys are having a fun ...I love this post. Glad you guys are having a fun summer<br /><br />AllieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-77331372948788645632011-08-04T16:53:06.175-04:002011-08-04T16:53:06.175-04:00I simply love these posts as they are sooo our sto...I simply love these posts as they are sooo our story as well. I would be fine without a diagnosis if we could just get services because our children need them - no magic words necessary. Thanks for sharing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-27954048029977032552011-08-04T15:25:50.752-04:002011-08-04T15:25:50.752-04:00Yes, I'm with you on that! It's hard but ...Yes, I'm with you on that! It's hard but it wouldnt necessarily change anything but give us a snapshot of future possiblilities but who is to say what your child is capable of. We must not limit them by what we think or what others tell us. :) or labels.Lady Estherhttps://www.blogger.com/profile/07055253194845947389noreply@blogger.com