tag:blogger.com,1999:blog-8914386689007184788.post2921496330138022814..comments2024-03-13T20:15:55.515+11:00Comments on Bit Of A Hippie: Help me please and an awardMandyhttp://www.blogger.com/profile/13431497921907185863noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-8914386689007184788.post-37649993030862047982010-10-25T17:54:32.359+11:002010-10-25T17:54:32.359+11:00i'm so sorry to hear about your son's rare...i'm so sorry to hear about your son's rare condition. i do hope you find someone who can help out, or at least someone with more information. you and your son and your family are in my thoughts and prayers! sending big hugs your way.Nicole Austinhttps://www.blogger.com/profile/06821747734967553308noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-59957385393092520732010-10-10T04:50:34.971+11:002010-10-10T04:50:34.971+11:00Hi there!
Anything new? I hope you are all happy a...Hi there!<br />Anything new? I hope you are all happy and well! xoxoxKristinhttps://www.blogger.com/profile/09492839042151189777noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-64110715355098532712010-10-09T15:25:19.379+11:002010-10-09T15:25:19.379+11:00Just checking in on you and your Jacob. Still pra...Just checking in on you and your Jacob. Still praying for you both. Gentle hugs, AmyAmyhttps://www.blogger.com/profile/14853178595822319968noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-25443456345719941182010-10-07T19:38:15.158+11:002010-10-07T19:38:15.158+11:00I feel so sorry for you all, I cannot even imagine...I feel so sorry for you all, I cannot even imagine what you're going through. I did some Googling just to understand what this illness is, now I know a little bit better. Can't find much except that maybe allergies trigger this situation ? O well, you probably know this too and I am not helping at all. My thoughts are with you, hope you can find some help soon.Brigitte aka Scrappassiehttps://www.blogger.com/profile/00574159759004030258noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-49601436311143118772010-10-05T22:15:39.903+11:002010-10-05T22:15:39.903+11:00Mandy,
I do not know of anyone with this illness,...Mandy,<br /><br />I do not know of anyone with this illness, but as a mother myself, I feel your pain to get the message out there to try anything. Have you considered at FaceBook account? It might be an option to open, link the video and a call for help. I could then post on my FaceBook and slowly but surely you might make some headway. I have more contacts on Facebook than I do on my blog. Just a thought. My thoughts and prayers for your entire family. Hugs!Kristi Wodekhttps://www.blogger.com/profile/05078959684376413931noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-12716745281426634372010-10-05T08:38:46.105+11:002010-10-05T08:38:46.105+11:00Sorry - I meant to say I'm not familiar with t...Sorry - I meant to say I'm not familiar with this illness.Cindi aka Ericksochttps://www.blogger.com/profile/08385967292877706775noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-25696611521202779632010-10-05T08:38:03.561+11:002010-10-05T08:38:03.561+11:00Mandy - I wish I knew how to help. He's lucky ...Mandy - I wish I knew how to help. He's lucky to have you. Though I'm familiar with this particular illness, my daughter was ill and in the hospital for some time last year, (and has since recovered), so I know how heartwreching it is to watch your child suffer. You'll be in my prayers, and thanks for stopping by my blog.Cindi aka Ericksochttps://www.blogger.com/profile/08385967292877706775noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-18309557352248400692010-10-05T03:25:07.689+11:002010-10-05T03:25:07.689+11:00Just checking up - I am so excited to see so much ...Just checking up - I am so excited to see so much activity here - hope you got the chance to speak with Lauri and that you can bring each other some peace :) xoxoxKristinhttps://www.blogger.com/profile/09492839042151189777noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-12586361456490636442010-10-03T22:44:28.083+11:002010-10-03T22:44:28.083+11:00just wanted to pass on some online hugs and positi...just wanted to pass on some online hugs and positive vibes for you and your son..what an awful thing to cope with and I am hoping that you find someone to help you with this who is in the same situationLorrainehttps://www.blogger.com/profile/06798465942659503011noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-32239953740118324702010-10-03T15:28:26.742+11:002010-10-03T15:28:26.742+11:00Hello! Hey Thanks for stopping by my blog!!! I lov...Hello! Hey Thanks for stopping by my blog!!! I love comments! I hope you come back more often!!! <br /><br />BTW...praying for you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-50646094040330284872010-10-03T01:29:41.287+10:002010-10-03T01:29:41.287+10:00My heart goes out to you and your family Mandy. I ...My heart goes out to you and your family Mandy. I hope help will come to you soon in some way or another. <br />Thinking of you.<br />Loads of hugs.<br />M xoxMarelizehttps://www.blogger.com/profile/17514910584284301308noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-5762962256180544212010-10-02T23:34:20.392+10:002010-10-02T23:34:20.392+10:00I wish I could help but I'm glad to see you fo...I wish I could help but I'm glad to see you found Lauri. Hopefully good things will come from the new connection. Take care.Jen @ By Jen ❤️https://www.blogger.com/profile/14971359561196871992noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-51643271261769565952010-10-02T10:43:36.841+10:002010-10-02T10:43:36.841+10:00I don't know anyone else dealing with this who...I don't know anyone else dealing with this who I could put you in touch with. But I really so wish that I did. I cannot imagine the heartbreak. That is a hard burden for any mama to have, and I so hope that you find someone who can help you and your little guy to recover.Jenniferhttps://www.blogger.com/profile/07054586181460710807noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-12669967407138559252010-10-02T01:25:06.883+10:002010-10-02T01:25:06.883+10:00Hi, Mandy. I know how heartbreaking, terrifying an...Hi, Mandy. I know how heartbreaking, terrifying and exhausting this must be for you. You are on my heart and in my prayers. I think of you often. I will do a post at some point soon on my blogs and on my Facebook to help get the word out.<br /><br />I did a silly little video on my recent post on my art blog along with an update on my progress with the projects. I'll leave you the link below in case you want to come and see it and hear my voice. I know that you probably aren't able to spend time doing the projects right now because of your extenuating circumstances (family must come first), but I still consider you an important member of our group whether you can do them or not. You have been a source of encouragement to me and are such a delightful person. I find it a privilege to be your blogging friend. Luv ya.<br /><br />http://artisticcreationswithtrudy.blogspot.com/2010/09/artistic-mother-video.htmlTrudyhttps://www.blogger.com/profile/11649677045881448393noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-25728938142530302392010-10-01T22:45:39.173+10:002010-10-01T22:45:39.173+10:00Hi Mandy! I guess that would have been helpful in...Hi Mandy! I guess that would have been helpful info to have wouldn't it? LOL! I'm on the phone arguing with a pharmacy (Grrrrr!) but will write to you later! :)Laurihttps://www.blogger.com/profile/03855289178612059929noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-23791343768975992212010-10-01T16:52:28.864+10:002010-10-01T16:52:28.864+10:00hi lauri...don't know how to get in touch...
m...hi lauri...don't know how to get in touch...<br />maybe you might check back here<br />mamdaray@bigpond.comMandyhttps://www.blogger.com/profile/13431497921907185863noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-7412119633980038412010-10-01T16:10:33.223+10:002010-10-01T16:10:33.223+10:00Mandy - I'm new to your blog, but a friend sen...Mandy - I'm new to your blog, but a friend sent me a link and asked me to help. I think you and I are in the exact same boat. My nine year old son, Julian, has severe spasmodic croup. Once Julian was in the hospital, on oxygen, fighting for his life. For an entire night he got racemic epinephrine breathing treatments every 20 minutes. I don't even want to think about how scary that much epinephrine is, but it was that or intubate him and they said they didn't want to do that because they were pretty sure they wouldn't be able to ever get him off the breathing tube (because the tube itself causes swelling). So I know how scary croup can be. <br /><br />I watched about two seconds of your video. Your son sounds exactly like my son, and I couldn't bear to hear that cough any longer (you know the feeling I'm sure). We've been to some of the best doctors in the country and had every diagnostic test remotely related to croup. And we've figured some things out. I will help you in any way I possibly can and I totally understand what you are going through. Is there an email address to write to you at?Laurihttps://www.blogger.com/profile/03855289178612059929noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-57513351995112090062010-10-01T16:10:32.463+10:002010-10-01T16:10:32.463+10:00This comment has been removed by the author.Laurihttps://www.blogger.com/profile/03855289178612059929noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-72707461248430816962010-10-01T09:05:37.305+10:002010-10-01T09:05:37.305+10:00Visiting from my Mom's blog (Rayanne)...my cre...Visiting from my Mom's blog (Rayanne)...my crew is praying for your little man, and for you dear Momma, as well as your whole family. We put the word out for info on our facebook. I saw the comment you left on my mom's post, and I'm overjoyed that your hope is rising...that is HUGE! Praying with great expectation, AmyAmyhttps://www.blogger.com/profile/14853178595822319968noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-5901334071685875342010-09-30T13:48:59.808+10:002010-09-30T13:48:59.808+10:00A follow up to my previous comment; I was mistaken...A follow up to my previous comment; I was mistaken and CVA can be life-threatening. I also want to give you link for http://www.nationaljewish.org/<br />I sure hope you can get a better treatment plan for your son to improve the quality of life that you all have. Hugs!Crafty Momhttps://www.blogger.com/profile/07886015439379154821noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-12593186507045417082010-09-30T11:14:48.675+10:002010-09-30T11:14:48.675+10:00I can't get the video to play right now, but a...I can't get the video to play right now, but are they treating it like asthma? Is he on any daily preventative/maintenance meds? My daughter has asthma (which I'm still learning a lot about) and the maintenance meds help reduce the # of asthma episodes she has. I assume you've seen a pulmonologist? Spasmadic croup is commonly known as cough variant asthma. I know that National Jewish is the top respiratory hospital in the nation. Perhaps you can look into going there? I realize what your son has is likely more serious than cough variant asthma since my understanding is it's CVA isn't life threatening.Crafty Momhttps://www.blogger.com/profile/07886015439379154821noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-27186306121990922052010-09-29T12:08:58.991+10:002010-09-29T12:08:58.991+10:00I don't even know what to say.
I have been in...I don't even know what to say. <br />I have been in the position with Kendra (she has allergies and asthma and has had her share of hospital visits) where I could see that she was not breathing and that she knew that I knew what was happening, but we could not do anything about it. BUT I realize that I am a wreck when it comes to those situations and that thank God Dave was around for the worst of them. But to feel the way I did for 10 minutes day in and day out? You must go crazy. I am so sorry I can't even express how much. I am so sorry to see both of you (and your family) hurt, and you must understandably be exhausted.<br />I have a wonderful doctor for Kendra. I will print out this entry and ask her if she knows about it. I will see her this Thursday, so I will let you know what she says.<br />I will do anything I can to help!<br />Oh! I will also link to your post and suggest that others do the same - to get the word out? Maybe then we will find more people? Is that okay with you? If so, I will post it with your link.<br />Love love love Me xoxoxoxKristinhttps://www.blogger.com/profile/09492839042151189777noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-90663980820397734072010-09-29T10:36:36.628+10:002010-09-29T10:36:36.628+10:00I wish I knew how to help. The only thing I can do...I wish I knew how to help. The only thing I can do, like Rayanne is pray. Whenever you get a chance dro by my blog. I was thinking of you while writing this post.<br /><br />xoxoxEstherE Makes Arthttps://www.blogger.com/profile/16173318966278001811noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-128586366432736472010-09-29T03:29:50.321+10:002010-09-29T03:29:50.321+10:00I'm drying my eyes right now...
I will be pray...I'm drying my eyes right now...<br />I will be praying because that's the only thing I know to do.<br />My husband works at the Houston Medical Center in Texas, they have cutting tech. going on all the time. I will find out if they are doing anything on what your son has and get back with you. I can not promise any thing but will look into it.<br />Just know you are getting a great big blog hug right now.<br /> (A BIG HUG).Raehttps://www.blogger.com/profile/02748795073718909226noreply@blogger.comtag:blogger.com,1999:blog-8914386689007184788.post-80538888534587677972010-09-29T00:15:05.449+10:002010-09-29T00:15:05.449+10:00Oh Mandy, I'm so sorry you have to go through ...Oh Mandy, I'm so sorry you have to go through this. I wish I could help, but I don't know anyone who lives with this. I'm always here if you wanna email and rant though. xoCarinhttps://www.blogger.com/profile/03950410908460825107noreply@blogger.com