tag:blogger.com,1999:blog-2212485478080287079.post8320050195516425152..comments2023-08-28T03:10:39.279-06:00Comments on Jaxsons Fight: "Acceptance"Laceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-2212485478080287079.post-48647470648257186892012-11-04T11:59:39.515-07:002012-11-04T11:59:39.515-07:00I was researching accessible design and I remember...I was researching accessible design and I remembered your bathing woes, and started Googling. I wonder if a roll-in shower and bathchair would work if you also installed a heatlamp to keep Jax from getting chilled while bathing? My mom is using a heated fan, but the movement of air on wet skin seems to reduce the value of the fact the air is heated, even in a small enclosed stall.<br /><br />Also, would it be possible to cover him with a towel, moving it to uncover the part of him you're bathing at the moment, so that he's always partially covered?<br /><br />If there's any sense in the insurance industry, you should be able to get such a remodel partially covered, if only to keep them from paying for expensive rehab for YOU if your back goes out from the strain! ;-DAstrin Ymrishttps://www.blogger.com/profile/07161302534935273886noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-62070696878029376752012-10-20T00:27:00.206-06:002012-10-20T00:27:00.206-06:00One person at a time for sure. Happy down Syndrome...One person at a time for sure. Happy down Syndrome Awarness month 2012 from Australia xxMumto2boyshttps://www.blogger.com/profile/06152543247474857330noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-59415309158401783132012-10-12T14:25:54.676-06:002012-10-12T14:25:54.676-06:00We had one of these www.bealift.co.uk for a long t...We had one of these www.bealift.co.uk for a long time - the long red handle lifts the seat up level with the bath edge or lowers it into the bathtub. I wonder if it's available where you are? Made a big difference to my screaming back. <br /><br />Now I have a shower stretcher which folds down over the bathtub at my waist height, and flips back up out of the way for the rest of us. <br /><br />I know that wasn't the point of this post, but just thought I'd mention them. Sometimes it's just plain hard isn't it? Tiahttps://www.blogger.com/profile/11360092874754466982noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-48209431455191349402012-10-12T13:45:23.828-06:002012-10-12T13:45:23.828-06:00I have asked those same questions...its not a pro ...I have asked those same questions...its not a pro life question it is a human question...jax is perfect and you are amazing! Think about you all often! Huge smiles n hugsAnonymoushttps://www.blogger.com/profile/06551567304485458524noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-76929160847580560162012-10-11T21:48:38.958-06:002012-10-11T21:48:38.958-06:00I love you little guy. He holds such a special pla...I love you little guy. He holds such a special place in my heart. He always will. I think he embodies perfection. <br /><br />You know I understand where you are coming from. I know that Zoey can do more then Jax but I also know what it means to have a child come with far more then the extra chromosome. I know what it feels like to be part of a community that you love but don't feel exactly a part of because while others your childs age are talking about colors and letters and reading and writing and having friends, i have nothing real to offer. Not many DS moms come by my blog.I think because I am different. We are outsiders. Maybe just the chip on my shoulder, but the way I feel often.<br /><br />I love you Lacey. And your boy and we do what we do because we love our children unconditionally. Zoey will most likely never walk or eat by herself and she will never dress herself or bath her self and she sure as heck won;t be writing her name, but you know what, I would not change a thing. I love her just as she is. I hate that she has to struggle. I hate that Jax and some of our other little DS buddies got hit with more then their fair share. But I do know that things could be worse. We could not have them at all. Now that would be true grief.<br /><br />Well, that is my novel my friend. Kiss the warrior buddy from me please. Whisper in his ear how perfect I think he is and how proud of him I am I.<br /><br />Love to you all.Heatherhttps://www.blogger.com/profile/04209967185741239050noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-77757429072206003672012-10-11T20:52:15.350-06:002012-10-11T20:52:15.350-06:00Go Jaxson! Sorry - wasn't signed in - that las...Go Jaxson! Sorry - wasn't signed in - that last anon post was me ;)Kristinhttps://www.blogger.com/profile/11988590894638135312noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-5407165275318688822012-10-11T20:51:09.631-06:002012-10-11T20:51:09.631-06:00Go Jaxson!Go Jaxson!Kristinhttps://www.blogger.com/profile/17766911680239712926noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-68510709271550330802012-10-11T20:30:50.391-06:002012-10-11T20:30:50.391-06:00Glad you were able to find the toy again! It make...Glad you were able to find the toy again! It makes me happy knowing that his favorite toy is from Gavin! I REALLY wish we lived by you! Gavin and Jax are so similiar, and their stories so much the same....they need to be in the same room someday! I love the pics of Jax, and I am teary eyed with pride for your sweet boy! Way to go Jax! You are such an inspiration! Hugs from me and Gavin!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-66515823292499482692012-10-11T16:14:25.624-06:002012-10-11T16:14:25.624-06:00Well done Jaxson!
So true that people don't...Well done Jaxson! <br /><br />So true that people don't realise anything could happen at any time leaving them or their child with a disability.Alisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-54343962362272717532012-10-11T15:43:48.169-06:002012-10-11T15:43:48.169-06:00You are super-brave to have read the comments on t...You are super-brave to have read the comments on that article. I avoid them like the plague. <br /><br />You are seriously SUPER Mom. I know you're saying that any one of us would do the same for our child, and that's *totally* true. But seeing you actually do it, seeing all that LOVE, is just so inspirational. Pure HAPPINESS seeing those photos of Jax playing with that toy!! That is so amazing. Love him, love you. <3 Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-1242196689393673532012-10-11T15:16:54.883-06:002012-10-11T15:16:54.883-06:00way to go Jax, thats awesomeway to go Jax, thats awesomeJuniorhttps://www.blogger.com/profile/03719754876592849914noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-53839692989015528422012-10-11T14:44:17.097-06:002012-10-11T14:44:17.097-06:00Woohoo! Way to go Jax!!!Woohoo! Way to go Jax!!!Tamhttps://www.blogger.com/profile/06127724900472716057noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-65518082163695902372012-10-11T14:18:13.472-06:002012-10-11T14:18:13.472-06:00Wonderful news! So proud of you Jax! Looking forwa...Wonderful news! So proud of you Jax! Looking forward to more amazing accomplishments from you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-76641776294870491622012-10-11T13:36:39.258-06:002012-10-11T13:36:39.258-06:00I've been sort of lurking around your blog for...I've been sort of lurking around your blog for a little while and I have a personal question to ask. I won't be offended if you don't want to or can't answer - I'm just nosy! :)<br />I'm reading your post about Jaxson's story and I was wondering if you sued the hospital for letting his glucose drop to 0 (which I believe is what caused his brain injury). I found that especially horrible - were they not paying attention?!<br />As I said, I understand if it's not something you want to talk about. (Or if you think I'm being nosy - I am, but I don't mean to offend!)Either way I think Jaxoson (and Arina!) are AMAZING little kids, and they are both BEAUTIFUL!Alice Fragglehttps://www.blogger.com/profile/04009130427995457826noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-59048244484766115642012-10-11T11:46:37.767-06:002012-10-11T11:46:37.767-06:00Yay Jaxson!!!!Yay Jaxson!!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-51859022626092407522012-10-11T11:02:59.974-06:002012-10-11T11:02:59.974-06:00OK...I pressed publish too soon! Reagan is very si...OK...I pressed publish too soon! Reagan is very similar to Jaxson developmentally. Her head control is a little better, but that's about it! I'm right there with you as far as the comments from people about raising a disabled child, it's difficult but you do what you have to do for your child, no matter their intellectual or physical abilities! Definitely know all too well about the screaming back and slippery 40lb child (and we have a bath chair)!!! I do know there are bath chairs that fit on platforms, so you can either use them in wheelchair accessible showers or in the tub with the shower. Never tried it, but we have to start thinking along those lines soon, because it's really not working for any of us!!! Hang in there!!! And so happy for the little things that keep us going!!Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-30125297604429689972012-10-11T10:54:59.456-06:002012-10-11T10:54:59.456-06:00I can TOTALLY relate!! Reagan is very similar to J...I can TOTALLY relate!! Reagan is very similar to Jaxson Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-53021124012834162522012-10-11T10:31:12.141-06:002012-10-11T10:31:12.141-06:00I loved this post. Jaxon looks so involved with t...I loved this post. Jaxon looks so involved with that toy and I can feel your happiness in this post. He is a blessed boy to have parents that love him so.<br /><br />I hope you can find some solutions with the bath. I remember when my little son had oxygen and and NG tube, even though he was only five months old, I really didn't want to go through all the trouble of bathing him because he'd pull out the NG tube every. single. time. But he needed a bath and I needed to do that sweet baby routine with him after all the medical craziness, so we did it anyways. Wilde Familyhttps://www.blogger.com/profile/07444906914803430911noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-18473718480185981942012-10-11T10:28:59.481-06:002012-10-11T10:28:59.481-06:00Lacey - While I knew that Jax had sustained a brai...Lacey - While I knew that Jax had sustained a brain injury, I had not realized the degree of his delays (ie/ 2 months). I am so excited that he found a toy that he clearly enjoys!! That is HUGE!! I wish there was an easy way to get your house modified for Sweet Jax and make life just a tiny bit easier. He is a Warrior indeed!!Warrior Momhttps://www.blogger.com/profile/13826758655887024105noreply@blogger.com