tag:blogger.com,1999:blog-4344360893029238313.comments2014-02-18T22:36:47.350-08:00The Wehring FamilyLauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-4344360893029238313.post-68836665530515747282014-02-18T22:36:47.350-08:002014-02-18T22:36:47.350-08:00My son has mito and all the ladies in my family he...My son has mito and all the ladies in my family he is the most effected though my mother is almost completely blind with retinosa pigmentosa(RP) I have it to we are told it comes from mito we have less symptoms than my son who is four now he was born at 32 weeks weighing only 4lbs 6ounces. He cannot walk unassisted or talk the doctors put his development severely delayed but he understands but cannot verbalize we teach him gestures. Everyday is a new day I am lucky I have my beautiful sarcastic smart funny Lucian because it was touch and go for awhile. We spent the first three months in the hospital. He goes to school and I thought they might steal him they love him.Anonymoushttps://www.blogger.com/profile/03933771568741866294noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-83861153762118189432013-08-14T15:50:51.463-07:002013-08-14T15:50:51.463-07:00Oh my- you have had a lot going on! I agree- sleep...Oh my- you have had a lot going on! I agree- sleep studies are the worst! I am so sorry the VNS is not an option and you will continue to deal with seizures. Ugh, dealing with another hospital in crisis is one of my worst fears- sounds like you handled it with grace and I'm glad Trace got the treatment he needed. Praying for lots of healthy days ahead for your little man!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-839198752126166782013-05-14T19:31:08.627-07:002013-05-14T19:31:08.627-07:00I loved and hated reading this post- it's so r...I loved and hated reading this post- it's so raw and honest. It's comforting to know there are other "Warrior Moms" who feel and fear the same things as I do (I could have written this post). I don't know why God would give us these precious babies with all they have to endure, but I trust we will know and understand some day, which may not be this side of eternity. Thank you for writing this- hugs. Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-39238056972428030932013-05-02T15:40:50.272-07:002013-05-02T15:40:50.272-07:00Whew! A lot going on! Way to rock that fork, Trace...Whew! A lot going on! Way to rock that fork, Trace! :) I hope you guys get some peace about whether to do the VNS or not, sometimes decisions can be so tough! If you do it, I hope it makes a huge impact on his seizure activity! Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-81683839741356812142013-05-02T13:34:28.491-07:002013-05-02T13:34:28.491-07:00Wow/ you guys have a LOT going on. I am sorry you ...Wow/ you guys have a LOT going on. I am sorry you are having to sell your dream home- I'm sure that's so hard. Hope and pray these new treatments for Trace make a big difference in his quality of life. Thank you for the prayers and encouragement this week- I thank God for my Mifo friends who get it!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-56568684186513505882013-04-13T17:47:32.046-07:002013-04-13T17:47:32.046-07:00So sorry for a rough few days :( The no wet diaper...So sorry for a rough few days :( The no wet diaper thing is so scary. Hope he has some energy back and can have a better week coming up!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-40540247421606170492013-03-06T14:04:19.920-08:002013-03-06T14:04:19.920-08:00I hope you guys can come to a decision you feel go...I hope you guys can come to a decision you feel good about and that whatever that may be, that it ends up being wonderful for Trace!Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-23136163872841809822013-01-23T06:30:12.906-08:002013-01-23T06:30:12.906-08:00Hope this year will be great for you and your fami...Hope this year will be great for you and your family. Always remember that this three will remain, faith, hope, and love. But the greatest of these is love.<br /><br />Anonymoushttps://www.blogger.com/profile/05975976371103570939noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-9761145534367169542013-01-14T07:04:48.449-08:002013-01-14T07:04:48.449-08:00We ended up with the Kimbra Spring from Ottobock. ...We ended up with the Kimbra Spring from Ottobock. It's nice and we were able to customize with certain features Trace needed, like head support, anti-thrust and extra belts to help him keep from slipping down.Lauriehttps://www.blogger.com/profile/06517627410498688956noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-88740597051162345362013-01-11T19:46:19.742-08:002013-01-11T19:46:19.742-08:00What stroller did you get??What stroller did you get??Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-23274291782658232052013-01-11T18:09:31.201-08:002013-01-11T18:09:31.201-08:00We opted to get K a wheelchair instead of a stroll...We opted to get K a wheelchair instead of a stroller (since she is 7 and they only allow one every 5 years) and I think we lucked out with the weight! It still is a bit of a hassle to break down, but from the sound of it, easier to move than most strollers. Regardless, it made SUCH a huge difference to be pushing her in a chair she FIT in, I didn't mind at all! <br /><br />As for the other stuff, I hope it is a blessing in the end, too. K sleeps upstairs with oxygen and her oximeter and while it is a hassle to run up there when she is alarming, it is nice to have "our" space, too. I hope you find the same true for you and your hubby. When she is sick, though, Josh gets the boot and K buns with me. ;)<br /><br />Could you PM me info about Dr. Y on Facebook? I have some concerns about K's muscles/joints and such, but the last ortho we saw wasn't helpful at all.Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-68463067995599010622013-01-11T14:15:26.149-08:002013-01-11T14:15:26.149-08:00Laurie,
Congrats - I guess?? New stuff, new normal...Laurie,<br />Congrats - I guess?? New stuff, new normal, hopefully a new sense of better will arrive one day. Post some pics of Trace using all his new gear out so we can see that sweet face. :-) See you at the walk! LoriThe Martin Familyhttps://www.blogger.com/profile/15765198250205565414noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-6681921955984052362013-01-11T11:29:35.319-08:002013-01-11T11:29:35.319-08:00So great for all of Trace's new things! We got...So great for all of Trace's new things! We got the medical stroller last summer and it IS so heavy. Since G still fits in his baby stroller, we just keep the medical one at school for him to use there- but someday I'll be in the same boat- I need to start lifting weights too! I hope the AFOs and new bed make life better, not just different. You are right, it is SO hard to see our kiddos need things that we never dreamed they would. But they do become normal, which I guess is a good thing. Hugs to you and your little mister!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-33936934034437554722012-12-13T21:21:09.894-08:002012-12-13T21:21:09.894-08:00My word, I love y'all! I mean, I know you know...My word, I love y'all! I mean, I know you know that, but this one moved me...you are the most amazing family and I am always encouraged by your posts. Love you. Love Thomas. Love Peyti-poo and love mister!!! These photographs are amazing and tell such a wonderful story for your timeline!! See you soon!! -nessThe Details:https://www.blogger.com/profile/06670258279686158760noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-90630676784631777302012-12-13T07:34:36.412-08:002012-12-13T07:34:36.412-08:00Happy happy birthday! I'm so happy that it'...Happy happy birthday! I'm so happy that it's been a good year for Trace. I pray that it continues for you guys. BTW - I can't get over how young you look in those photos and how "old" Peyton looks - sisters really! Congrats on that! :-)LoriThe Martin Familyhttps://www.blogger.com/profile/15765198250205565414noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-35374032251472664982012-12-13T06:16:53.409-08:002012-12-13T06:16:53.409-08:00Happy birthday to your boys! Hope it is a great on...Happy birthday to your boys! Hope it is a great one for all! Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-58874352889936713182012-12-10T17:02:14.230-08:002012-12-10T17:02:14.230-08:00Wow- this is incredible. I'm so sorry I couldn...Wow- this is incredible. I'm so sorry I couldn't participate this year. Thank you so much for all you did for all our kids!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-7786869424413102642012-12-10T15:37:02.423-08:002012-12-10T15:37:02.423-08:00That is so awesome!! Love Trace's signature on...That is so awesome!! Love Trace's signature on the giant check!Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-43199073279041577712012-11-17T09:34:48.521-08:002012-11-17T09:34:48.521-08:00What a handsome little doctor!! :) So glad he had ...What a handsome little doctor!! :) So glad he had a great evening!Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-53285262525097986762012-10-30T13:39:28.180-07:002012-10-30T13:39:28.180-07:00So sorry to hear this news about Peyton, and so gl...So sorry to hear this news about Peyton, and so glad you were able to get her a quicker appointment than 1 year! I hope you can get a treatment plan going so she can get back to cheering and feeling well!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-29868127259421494782012-10-10T06:41:19.384-07:002012-10-10T06:41:19.384-07:00I hope one day we have a diagnosis day to remember...I hope one day we have a diagnosis day to remember. Sounds strange, I know, but years and years of testing...knowing something is wrong but not being 100% certain what to call it...it has its own challenges. Of course, I wish none of these sweet babies had anything to diagnose in the first place, but I'm thankful for a community that is so warm and open in sharing our everyday struggles. Trace is such an adorable guy, I'm so glad he's doing well!Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-45193643748311368672012-10-05T14:24:42.226-07:002012-10-05T14:24:42.226-07:00This post made me cry. I'm so sorry, but also ...This post made me cry. I'm so sorry, but also so happy Trace is doing so well right now. Praying this year is one of continued improvement and great memories!Elizabethhttps://www.blogger.com/profile/06074856757394183697noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-67146122174350127572012-09-27T09:24:20.923-07:002012-09-27T09:24:20.923-07:00These precious kiddos have been through so much. T...These precious kiddos have been through so much. Thanks for sharing Trace's story.Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-54146392535973534242012-09-11T20:36:35.878-07:002012-09-11T20:36:35.878-07:00This comment has been removed by the author.acaylorhttps://www.blogger.com/profile/08945717566276559003noreply@blogger.comtag:blogger.com,1999:blog-4344360893029238313.post-30083787742801302422012-09-10T21:56:25.492-07:002012-09-10T21:56:25.492-07:00This comment has been removed by the author.acaylorhttps://www.blogger.com/profile/08945717566276559003noreply@blogger.com