tag:blogger.com,1999:blog-2584570468185542765.comments2022-03-27T06:30:56.890-05:00Austin's IS JourneyHollihttp://www.blogger.com/profile/00535016211470087504noreply@blogger.comBlogger637125tag:blogger.com,1999:blog-2584570468185542765.post-62134282494435052532011-07-25T08:25:16.620-05:002011-07-25T08:25:16.620-05:00I am so sorry. How disappointing, not just in the ...I am so sorry. How disappointing, not just in the results but in feeling that your appointment and time spent with Dr C was such a waste of time and money and effort. (((HUGS))) Do you think you'll try the ACTH again?<br /><br />On a side note, I absolutely LOVED the video of Gus and his pool. I think you should send that to America's Funniest Pets or whatever that show is called.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-19245752844577701382011-07-22T15:48:55.260-05:002011-07-22T15:48:55.260-05:00I can't even begin to imagine what that must f...I can't even begin to imagine what that must feel like.<br /><br />I am so, so sorry.<br /><br />I don't even know what to say, and I am not usually struck speechless.<br /><br />Other than I would be, were I in your shoes, equally as dumbfounded and asking the exact same questions.<br /><br />It's...wrong.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-41816111922221752452011-07-16T12:56:54.088-05:002011-07-16T12:56:54.088-05:00Ken, I totally forgot myself. Ugh. Of course, th...Ken, I totally forgot myself. Ugh. Of course, the first one we had there Austin had a major cold and didn't really even want to get up. I'll post soon on what we found out.<br /><br />Devon, Thank you!! :)Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-46557861501051109412011-07-14T18:37:52.871-05:002011-07-14T18:37:52.871-05:00OH yeah...should have remembered to warn you about...OH yeah...should have remembered to warn you about that, and it slipped my mind, you have to stay in that one area in Detroit for the EEG. Restricted movement is the hardest part.<br /><br />Hope the answers are forthcoming and GOOD.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-75235113156064638062011-07-14T18:32:45.586-05:002011-07-14T18:32:45.586-05:00Praying for you guys!Praying for you guys!devonhttps://www.blogger.com/profile/04898547401589251459noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-67801396517611611902011-07-11T16:22:12.053-05:002011-07-11T16:22:12.053-05:00Hi Amy, Yes it's working out wonderfully. As ...Hi Amy, Yes it's working out wonderfully. As far as the entrapment issues, I overstuffed the sides with pillows (folded in half length wise). We have about a 39" wide twin mattress and the pillows have prevented him from being able to slide down in the sides. After about a week or so he learned he couldn't stand up and doesn't even try anymore. We haven't gotten it on a bed frame as of yet, but we have one due to be here in a few days and I'm sure I'll post something on it. Oh, by the way, there's been a little bit of wear on some of the seams, but I think it's due to overstuffing it (the wide mattress and extra pillows on the sides). Still, it's been a lifesaver and beats the thousands of dollars the others cost. Hope this helps. ;)Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-31109232761982213032011-07-11T15:01:34.247-05:002011-07-11T15:01:34.247-05:00Hi, I have a son with autism and down syndrome,and...Hi, I have a son with autism and down syndrome,and I was considering getting the same bed you posted about. How is it holding up so far? My son is 4yo and very energetic. I think he would like being enclosed like that ,because he is always crawling into little spaces and cubbies when he plays. <br />I am concerned about the possible entrapment. Did you ever put the bed on a frame, or didn't you find it necessary? <br /> I am really excited to find this bed after seeing some for $5000 and up and we just can't afford something like that.<br />thanks for your help.<br />AmyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-20750037273383023262011-06-28T11:13:10.587-05:002011-06-28T11:13:10.587-05:00I stink at titles too :)
Glad all is well and you...I stink at titles too :)<br /><br />Glad all is well and you have your bedroom back!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-88680044966350559782011-06-27T16:57:45.471-05:002011-06-27T16:57:45.471-05:00Thanks, Ken. :) I usually do the titles after I ...Thanks, Ken. :) I usually do the titles after I write it, but it's always a pain to me! I may just start using the date like you suggested. ;)Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-14883775778524369252011-06-27T15:56:49.798-05:002011-06-27T15:56:49.798-05:00Anxious to hear how it goes in Detroit. Again, don...Anxious to hear how it goes in Detroit. Again, don't sweat the updates. And if you are pressed for titles, write the blog first, then go through and choose a word or two from a paragraph that might sum up the actual thing you've written.<br /><br />In this case...Detroit Awaits could work, or Austin Moves Out...Again. Anything. I almost always write my titles AFTER the text to the blog is written.<br /><br />If that doesn't work for you, a DATE works just as good. It'd your blog after all. Austin Update: 06-27-11.<br /><br />Hope it goes well for you...blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-90429359069342498452011-06-15T12:07:48.560-05:002011-06-15T12:07:48.560-05:00Yay to respite and yay to seeing Dr C. I hope he c...Yay to respite and yay to seeing Dr C. I hope he can give you answers this time.<br /><br />And don't feel bad about the blogging thing. This is my first time in a LONG time going to all the blogs.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-56918972195511933012011-06-08T08:03:27.747-05:002011-06-08T08:03:27.747-05:00Ditto Ken. Sometimes your heart (and head) just ne...Ditto Ken. Sometimes your heart (and head) just need a break. I have been there. <br /><br />And, honey, I am SO happy you have respite finally! YOU NEED IT! And I love that your BBF is with Austin for you...I deeply believe it will only strengthen your relationship as she starts to get a deeper understanding of what your life is. Because until you're in it...there is just no way to fully wrap your heart and mind around it. <br /><br />(((((((((hugs)))))))) <br /><br />Love you, hon...<br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-33582417733096197462011-06-04T11:03:57.685-05:002011-06-04T11:03:57.685-05:00It's great to hear from you and ditto on what ...It's great to hear from you and ditto on what Ken says. We love you no matter what and we completely understand.<br /><br />I'm glad you are going up to Detroit. I hope you get some much needed answers.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-90317113208461106972011-06-03T20:17:50.358-05:002011-06-03T20:17:50.358-05:00You never have to apologize for stepping back. Eve...You never have to apologize for stepping back. Ever. You have every right to, and you have to sometimes. There is almost an inevitablity to it. <br /><br />Hell, I am in and out of a fog all the time. Sometimes I come close to the brink of just walking away from the Internet completely. But I need it too much. If not for it, I'd have very little interaction at all with humanity. That's just the way my circumstances have played out as far as Life.<br /><br />But no matter what the circumstances or how long the absence, you know all it takes is a 'Hi, I'm here' and we all welcome you back and want to know how you are. And when you disappear, we give you your space. <br /><br />I'm glad you are going up there, it's good. I hope there are some good things that are gained from the trip. I think that there should be some kind of help you can get from some service for this...you two should NOT be eating all the costs for this. Austin should be on some kind of disability waiver and he should be plugged into a lot of privately funded disability benefits when it comes to travel. They are out there.<br /><br />Glad you are back with an update. Hope it goes well. We're always here for you.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-57822104450131231592011-06-03T08:14:39.719-05:002011-06-03T08:14:39.719-05:00Jamie -HUGS!! Long time, I know. Long story...Bu...Jamie -HUGS!! Long time, I know. Long story...But, no, Austin's first surgery was in Houston. We went to Detroit about 2 yrs ago but tests were inconclusive at the time. We didn't roam around too much in Detroit, just when we got lost and ended up in Canada! lol We were actually totally surprised at the hospitality everyone showed us while we were there...except for the border patrol, of course! ;) Hugs for you and Madie. I read the facebook updates, but haven't ventured to Blogger in a while. Has the improvement from the diet decreased?Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-4615018781195955412011-06-03T08:09:48.739-05:002011-06-03T08:09:48.739-05:00Yes, Tera, I would definitely like more info. I w...Yes, Tera, I would definitely like more info. I wonder if they would contribute even if we are just going for testing or if he has to be going to receive treatment.Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-63848859530636950482011-06-02T22:38:21.523-05:002011-06-02T22:38:21.523-05:00I agree with Jamie...Detroit is quite ghetto. Don&...I agree with Jamie...Detroit is quite ghetto. Don't walk around alone. My husband, who is quite menacing looking himself, was afraid to walk down the street near the hospital. FYI, Continental has a program to provide flights for children receiving medical care. They paid for 2 of our 3 flights to Detroit (it's one of the few programs not based on income). Let me know if you need more info.Reagan Leighhttps://www.blogger.com/profile/10276933188608521229noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-67571296220056202032011-06-02T21:57:09.429-05:002011-06-02T21:57:09.429-05:00Its nearly 11pm in Ct land...I just layed my Madie...Its nearly 11pm in Ct land...I just layed my Madie to bed about 930 Then jumpimg out of bed I hear strange noises from her room...A big bad seizure was going on...is this 700 Dollar a month diet working or what?????<br />I feel as if I need a glass of wine to calm me back to sleep...reading about Austin tonight makes me wish we lived closer. Detroit is a ghetto fabulous place for sure...look for that "f-word" spray painted on the Subway..LOL And dont eat the shitty cafeteria food! LOL We were blessed to have family living outside the city to stay....Dr C is a great guy for sure..madie was not a surgical candidate when we went but it was nice to get some needed info. Did he do Austins 1st surgery? Ok enough of me...I really better get to sleep.Im glad to see an update stranger!<br />keep us posted. Hugs.Jamiehttps://www.blogger.com/profile/08806816819294256310noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-76268755510782104392011-05-15T16:47:03.397-05:002011-05-15T16:47:03.397-05:00Oh sweetie...
Sheesh.
But I do believe when it ...Oh sweetie...<br /><br />Sheesh. <br /><br />But I do believe when it comes to surgery...Dr. C is always a good choice. <br /><br />BTW...Bactrim is a Sulfa(sulfer) based drug (which you probably already know). I would assume that that he had an allergic reaction to the sulfa...which can be VERY serious. Toby had a sulfa reaction when were living in The Bush. I was SO ignorant back then. When I think about it NOW I can't believe we stayed in Tanzania at all! :) <br /><br />Anyway...I think you need some clarity on the reaction. His rash looked REALLY NASTY. And pictures never capture the whole deal...so I'm sure it was worse in person. <br /><br />Love you, hon. <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-69830836460068498562011-05-13T11:51:15.010-05:002011-05-13T11:51:15.010-05:00Hope the healing continues and life gets a little ...Hope the healing continues and life gets a little easier for you all soon.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-45828742930402901332011-05-12T13:00:15.123-05:002011-05-12T13:00:15.123-05:00HUGS!!!
We had issues with Sophie scratching po...HUGS!!! <br /><br />We had issues with Sophie scratching post-op also. During the day I could keep an eye on it. But at night, she would pick on it while she slept. So I would wrap her head up with gauze like they do during EEGs every single night before she went to bed. It FINALLY healed. Though I can't remember how long it took.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-11296659143561523362011-05-10T20:12:21.379-05:002011-05-10T20:12:21.379-05:00I was just thinking about you guys! Hope Austin co...I was just thinking about you guys! Hope Austin continues to heal! I am so glad you guys are accessing MDCP services. You need a break and Austin, I'm sure, will love having a new playmate! Continuing to pray for you guys!!devonhttps://www.blogger.com/profile/04898547401589251459noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-7364496295497941782011-04-18T12:34:53.240-05:002011-04-18T12:34:53.240-05:00Holli - I think of you and Austin often. I am so ...Holli - I think of you and Austin often. I am so happy to hear the postive changes. You are such a wonderful mother! We will keep praying for you guys. KatyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-38413138909349575532011-04-07T11:56:54.586-05:002011-04-07T11:56:54.586-05:00((((((((hugs)))))))))
Passing the buck is SO muc...((((((((hugs))))))))) <br /><br />Passing the buck is SO much easier in theory than reality...<br /><br />I can't wrap my mind around why I'm SO addicted to self loathing? Ugh. <br /><br />And of course, you don't really need me to tell you that you're an amazing mom. But I will anyway. <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-24702140562694129462011-03-30T08:24:32.896-05:002011-03-30T08:24:32.896-05:0010 pounds of suck in a 5 pound bag. Sorry about th...10 pounds of suck in a 5 pound bag. Sorry about this. Have you taken this up with the OT? If not, you should. It is EXTREMELY IMPORTANT that you voice your intense concern over what you feel with any and all therapists who have anything to do with Austin.<br /><br />Don't stand on ceremony. IF you have to, switch therapists. You do not have to accept that from a therapist. If you have given a specific directive, and it is not being followed, you bring the thunder and you bring it hard...and yeah, you are ABSOLUTELY in the right to be concerned about him shoving unknown plastic items in his mouth, especially if he is a chewer.<br /><br />I cleared the grandparents house of every toy I had given them that I had worked on (the collectible stuff) while I was 'courting' their daughter since Jen's Mom was a fan of all that stuff, since much of it was laying around loose in the play area where Bennett would be. That stuff shouldn't even be near his SKIN, let alone his mouth.<br /><br />So yeah, be afraid and concerned about it and make a stink. Even if it is only germs that concern you, that in and of itself is enough of a reason too.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.com