tag:blogger.com,1999:blog-2212485478080287079.post2728268514995146053..comments2023-08-28T03:10:39.279-06:00Comments on Jaxsons Fight: Finally...progressLaceyhttp://www.blogger.com/profile/03321275110857561824noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-2212485478080287079.post-18484046957224378982011-10-11T19:52:41.183-06:002011-10-11T19:52:41.183-06:00Thinking of you Lacey!! I am so sorry things have ...Thinking of you Lacey!! I am so sorry things have not been off to a great start. It is so frustrating that they put in a ginormous tube in him when that wasn't what he had before. I seriously get so frustrated with doctors because even though they are doctors when you have a medically fragile kid things are not easy and making changes is a huge thing that takes time to get use to. They don't get it. <br /><br />I'm praying things will start to go more smoothly and you can get settled somewhere for now. <br /><br />Hugs!!!Michelle and Seanhttps://www.blogger.com/profile/05523818279110462492noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-21870414680673151952011-10-11T12:28:59.246-06:002011-10-11T12:28:59.246-06:00Sending hugs across the miles!Sending hugs across the miles!Runningmamahttps://www.blogger.com/profile/15248750625897632738noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-62675176381450952522011-10-11T11:55:15.349-06:002011-10-11T11:55:15.349-06:00HUGS!!!!HUGS!!!!Sweet Pea's Mommyhttps://www.blogger.com/profile/04865365312620255005noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-35606188545322504082011-10-11T09:21:05.576-06:002011-10-11T09:21:05.576-06:00I certainly cannot know how you feel as a mother w...I certainly cannot know how you feel as a mother with a fragile child. However I have had severe medical issues my entire life. Heart condition, neurological, lung disorder.<br /><br />I had a stoke four years ago. However last year I had Guillan Barre. I am still paralyzed and due to other complications I have been bed-ridden this entire time. I cannot even transfer to a wheelchair.<br /><br />Now doctors are doubting the stroke and Guillan Barre and wondering if I have adult onset Mitochondrial disease...but tests haven't showed it though I have all the symptoms except dementia and loss of cognitive ability.<br /><br />I have a team of permanant doctors. Neuro, cardio, pulmo, stroke...<br /><br />I was just wondering if you will search for individual doctors instead of just a ped? My individual doctors ha e always been so helpful and insightful or, if you are sticking with just a ped and using the hospital for other doctors for a reason<br />(my gastro has come to my home to change my tube or wen healthy enough I go to him, light sedation if was eber needed)Suzannanoreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-39880267461243787072011-10-11T08:18:06.839-06:002011-10-11T08:18:06.839-06:00That sounds so frustrating! In my life it always ...That sounds so frustrating! In my life it always seems to be the little things that send me into a crying fit... it's the things that shouldn't be an issue that really bother me when they go wrong. Hoping the rest of the move goes smoothly.LisaLhttps://www.blogger.com/profile/05271092686861372345noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-81818930163209955902011-10-11T06:49:52.683-06:002011-10-11T06:49:52.683-06:00Although our challenges are different, we all go t...Although our challenges are different, we all go to that mode of thinking about the future. Just remember, one day at a time. My child is 10 and 117 lbs. with mobility issues...please know that just as you have faced every challenge with Jax...you will figure it out...not figuring it out isn't really an option. You are an amazing Mom and no one can truly understand everything unless they spend a few days walking in your shoes. Sending a huge hug and let those tears out, we all need to have that release so we can refocus again, take care of and love our children even more.suelmayerhttps://www.blogger.com/profile/09990628698335411723noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-62327259684725513882011-10-10T23:25:56.937-06:002011-10-10T23:25:56.937-06:00One day at a time... breath :)One day at a time... breath :)Kristinhttps://www.blogger.com/profile/11988590894638135312noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-52632582824427266122011-10-10T23:10:11.114-06:002011-10-10T23:10:11.114-06:00Hugs. I've got hugs and more hugs.Hugs. I've got hugs and more hugs.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-37221120928240466492011-10-10T19:20:41.850-06:002011-10-10T19:20:41.850-06:00Oh Lacey, I'm so sorry. I know absolutely not...Oh Lacey, I'm so sorry. I know absolutely nothing of what you're going through, but I do know this - some moments totally warrant crying. It makes you feel just a bit better afterwards, doesn't it?Heatherhttps://www.blogger.com/profile/11652856706985473806noreply@blogger.comtag:blogger.com,1999:blog-2212485478080287079.post-74022765790549716142011-10-10T19:07:45.023-06:002011-10-10T19:07:45.023-06:00Cry those tears, take a deep breath, and get back ...Cry those tears, take a deep breath, and get back to the Super Momma that you are! Having a child similiar to Jax....I totally get where you are coming from. Every once in awhile we need to release all the emotions, regroup, and then get back to business and all the busyness! <br /><br />But, why did they put such a big GJ tube in?! That's crazy! Hope you get used to it soon, and hope it stays in! Hang in there! Big Hugs!The VW'shttps://www.blogger.com/profile/05116325494368190699noreply@blogger.com