tag:blogger.com,1999:blog-175625908824414790.comments2023-06-09T18:28:45.335-07:00Sunshine in a Hypotonic WorldRettMomhttp://www.blogger.com/profile/15240398827208816505noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-175625908824414790.post-58343554957776368402016-02-11T13:31:18.512-08:002016-02-11T13:31:18.512-08:00Your such an inspiration and so eloquent in your w...Your such an inspiration and so eloquent in your writing and how you handle situations. Sending love your way!Dawn Niermannhttps://www.blogger.com/profile/05120040952504886508noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-69451990446999151562015-11-10T01:03:01.457-08:002015-11-10T01:03:01.457-08:00his is my first time i visit here. I found so many...his is my first time i visit here. I found so many entertaining stuff in your blog, especially its discussion. From the tons of comments on your articles, I guess I am not the only one having all the leisure here! Keep up the excellent work.<br /><a href="http://www.ireachcontent.com/news-releases/find-the-best-mattress-with-sleep-junkies-top-and-worst-10-guide-for-2015-538234721.html" rel="nofollow">mattress reviews</a><br />mayazoehttps://www.blogger.com/profile/15424160001444581838noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-78968296771137752892015-10-05T21:14:46.384-07:002015-10-05T21:14:46.384-07:00Really helpful reminder! Thank you!Really helpful reminder! Thank you!Unknownhttps://www.blogger.com/profile/09465916971283325170noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-90171746006745367622014-09-05T02:45:27.870-07:002014-09-05T02:45:27.870-07:00Oh I am so sorry you are going through all this- i...Oh I am so sorry you are going through all this- it sounds like our last few months. Clearly I can't advise you, but for us all the investigations were worth it. Jess is so much better since having T&A out and the gastrostomy. Since then, she hasn't had any chest infections or ambulances called. Clearly we are now facing new issues (repeated UTI's with antibiotics ++++ and serious reflux which will probably need a Nissens) but life is much better than it was 6 months ago, because of those surgeries. I hope life gets better for you all soon too. Much love xxxxLizhttps://www.blogger.com/profile/00929211690721448287noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-27809521561310692942014-08-12T07:20:42.925-07:002014-08-12T07:20:42.925-07:00I was so excited to see there was a second book! I...I was so excited to see there was a second book! It has been so difficult to find a children's book that represented her and yours is just amazing. Thank you so much for popping over to my blog.RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-51217644502948244202014-08-12T07:19:33.815-07:002014-08-12T07:19:33.815-07:00She was so little when we ordered the wheelchair t...She was so little when we ordered the wheelchair that I picked the color. But if she still needs one in four years I will let her decide.RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-59347382183469303932014-08-08T10:23:51.298-07:002014-08-08T10:23:51.298-07:00I decorated my flute case with rainbow tape. It at...I decorated my flute case with rainbow tape. It attracts more attention than the average case. Did Evie pick the wheelchair color out? Anonymoushttps://www.blogger.com/profile/10616282351291824392noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-67973706987634268702014-08-07T15:30:37.861-07:002014-08-07T15:30:37.861-07:00Such a lovely review, thank you! So glad you and E...Such a lovely review, thank you! So glad you and Evie like my book - I'll let Toby and Clemmie know. Rebecca xxRebeccahttps://www.blogger.com/profile/01197679200734172935noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-66183985824175252122014-07-24T17:09:12.267-07:002014-07-24T17:09:12.267-07:00My 10 Month old undiagnosed Hypotonic son does the...My 10 Month old undiagnosed Hypotonic son does the same thing during tummy time! His head constantly is up and down every few seconds! A physical therapist told me this was unique to his condition and she had never seen that before... Worried me so much thinking this was just him! Such a relief to know that other hypotonia kids do this too ! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-18862315773057810762014-06-17T13:12:41.899-07:002014-06-17T13:12:41.899-07:00This is amazing. I love how you keep track of ever...This is amazing. I love how you keep track of everything. I am thinking of making a binder for me and my brother since we are always going to the doctors.codydollartisthttps://www.blogger.com/profile/12316955826702548532noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-16381859068514549132014-03-30T03:53:57.254-07:002014-03-30T03:53:57.254-07:00I have it memorized. I LOVE the message in this bo...I have it memorized. I LOVE the message in this book and when I go to Barnes and Noble I buy two or three copies to give as gifts or donate.RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-3112798318936726052014-03-23T11:10:34.530-07:002014-03-23T11:10:34.530-07:00Ive been reading this since I was in first grade n...Ive been reading this since I was in first grade now I'm in 11th and I still love itAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-77551759719809981842014-02-10T20:37:58.390-08:002014-02-10T20:37:58.390-08:00Your words are most helpful. Thank you for sheddin...Your words are most helpful. Thank you for shedding light on this condition. I am a parent attempting to seek a more concrete diagnosis for my daughter. You make me feel like we're not alone!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-24445824634443643792014-02-02T16:40:38.015-08:002014-02-02T16:40:38.015-08:00Love that some blessings have come out of Evies di...Love that some blessings have come out of Evies diagnosis. It also sounds like shes doing great. You are right to take care of yourself, as they say this SN stuff is a marathon rather than a sprint. marie clarehttps://www.blogger.com/profile/15102120046107159127noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-5023468341583932852014-01-25T13:13:53.661-08:002014-01-25T13:13:53.661-08:00Thanks for this! I have a 6 month old with hypoton...Thanks for this! I have a 6 month old with hypotonia due to Dup15q and I'm so glad to have found your blog. Thanks for all the great resources.Dianahttps://www.blogger.com/profile/08001190913358406900noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-52989941464136734902013-12-19T05:03:24.219-08:002013-12-19T05:03:24.219-08:00Thanks Tricia!Thanks Tricia!RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-28086328766603170152013-12-19T05:02:57.739-08:002013-12-19T05:02:57.739-08:00I'm glad I could make you laugh and thankful y...I'm glad I could make you laugh and thankful you aren't in the same boat. I checked your blog and you have your own battles to fight. Keep writing and thanks for reading!RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-41082487833299209742013-12-19T05:00:47.531-08:002013-12-19T05:00:47.531-08:00Since everything overlaps it makes it that much ha...Since everything overlaps it makes it that much harder to determine what the next "to do" should be. I call it the domino effect. We knock one down with the knowledge that it will lead us to the next domino. I would like to think that there would be an end to the BIG items on the list, but every time one goes down another one pops up. All in due time...RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-65487761580353332132013-12-18T13:29:54.947-08:002013-12-18T13:29:54.947-08:00Ha!! I'm laughing but only because it is so si...Ha!! I'm laughing but only because it is so similar to our list!! Ceiling hoists, through floor lifts, access to the garden which is 4 ft below our back door.... Widening the said back door so future, bigger wheelchairs can fit through, organising said future bigger chair as she has already grown out of current one, but should probably wait for rigid brace to be fitted as all her seating will then need to be reviewed... And don't even get me started on the bathroom!!! And that is just moving and handling issues! Everything overlaps and has an implication on everything else- there is no obvious starting point to this list!! Much love xxLizhttps://www.blogger.com/profile/00929211690721448287noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-12892233074574412462013-12-06T09:24:05.596-08:002013-12-06T09:24:05.596-08:00I'm laughing and at the same time thanking fat...I'm laughing and at the same time thanking fate/God/whatever that I'm not in your shoes at this point.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-56080995903338736682013-12-03T11:24:55.332-08:002013-12-03T11:24:55.332-08:00Holy Lord in Heaven, Candice! I got a panic attack...Holy Lord in Heaven, Candice! I got a panic attack just reading all of that. But you know what? You are a strong woman and mother, and I believe in you! You will achieve all of this and more because that's who you are! You are to-do person and slowly, but surely you will make all of this and more happen! Did I mention I believe in you? Love you, Tricia and KetiLove Beyond All Measurehttps://www.blogger.com/profile/09152496921007616140noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-2385009016432160192013-10-15T09:34:27.232-07:002013-10-15T09:34:27.232-07:00Wow, lots of changes in your world! Wishing you a ...Wow, lots of changes in your world! Wishing you a smooth transitional period and not too much struggle when it comes to the tough decisions. <3Amy Rhimehttps://www.blogger.com/profile/13314237387516511104noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-10987587299264161922013-09-26T06:22:08.406-07:002013-09-26T06:22:08.406-07:00Thank you Jo. Knowing the diagnosis was a blessing...Thank you Jo. Knowing the diagnosis was a blessing and a curse. It brought me into a wonderful supportive Rett family and also brought a deeper understanding of all the potential dangers. Sometimes I feel like a walking Debbie Downer and try very hard to put it aside when I'm out with friends. Not always easy since we eat, sleep, and breathe all things Rett.RettMomhttps://www.blogger.com/profile/15240398827208816505noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-89394726545941978572013-09-26T06:07:22.003-07:002013-09-26T06:07:22.003-07:00I totally understand what you mean. This is a life...I totally understand what you mean. This is a life that NO ONE can "get" until they have lived it. Every day is an emotional rollercoaster fraught with unpredictability and stress. My daughter does not have Rett Syndrome (at age 10, she is still undiagnosed) but she has so many similarities to a child with Rett's that they have done multiple DNA tests for it. So yes, I get it and even though there are many blessings amidst the heartaches, it is a journey no parent and child should have to go thru. Sending you good thoughts. smilinjohttps://www.blogger.com/profile/16774270348325860387noreply@blogger.comtag:blogger.com,1999:blog-175625908824414790.post-21800044451517347092013-09-22T14:46:03.408-07:002013-09-22T14:46:03.408-07:00So sorry Rae has been ill. I pray she is on the me...So sorry Rae has been ill. I pray she is on the mend. I know God is using you and will continue to use you. Continue to lean on him. Hugs sent your way.<br />Anonymoushttps://www.blogger.com/profile/05757283961619845955noreply@blogger.com