tag:blogger.com,1999:blog-401303964563152307.post3735720935735492835..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : The surgeries are comingEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-401303964563152307.post-50858917291277613012017-08-24T13:01:13.744-04:002017-08-24T13:01:13.744-04:00Wishing Fireman Max an easy experience, and sendin...Wishing Fireman Max an easy experience, and sending good thoughts to you all. Marjoriehttps://www.blogger.com/profile/08086300075775926044noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-51181268490433679432017-08-12T11:12:18.296-04:002017-08-12T11:12:18.296-04:00I hope that the surgeries go well for Max. I think...I hope that the surgeries go well for Max. I think it's great that you are having them both done at the same time, as it'll cut down his recovery time/nerves of having to go under again. <br /><br />I had my heel cords lengthened at age 8. When I was 14, my doctors did a 3 in 1 operation on me, bilateral hip releases, bilateral hamstring releases, and bilateral rectus transfers. When I was 8, the surgery was my parent's choice, entirely, and it was a necessary choice, for continued improvement of my mobility. For my surgery when I was 14, I made the decision for that myself, my parents left it up to me. I have to say that being responsible for the choice was scary, but important. I think it's wonderful that you are the same way with Max. It's important to have a say in what happens to your body. I wouldn't change my decision, and I feel that it was an important one for me beginning to learn to speak my mind and advocate for myself, so maybe Max will have a similar positive experience in that regard.Melissas Midnight Musingshttps://www.blogger.com/profile/06871229267547737727noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62482913767503454472017-08-11T11:25:59.533-04:002017-08-11T11:25:59.533-04:00Very well stated. The hospital that my son (14, au...Very well stated. The hospital that my son (14, autism, non-verbal) goes to (St. Louis Children's) has Child Life Specialists to help him through everything. They even made it possible that he didn't have to be sedated for an MRI. Janetnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2000412078628751802017-08-10T17:10:38.342-04:002017-08-10T17:10:38.342-04:00I love what you said about no surgery being minor ...I love what you said about no surgery being minor unless it's happening to someone else's kid. My 3 year old has had 3 minor surgeries (g tube placement, bilateral orchiopexy, and tonsillectomy/adenoidectomy) plus countless procedures, some of which were sedated. None of them felt minor in that moment, plus even with minor surgeries, there are still risks. After my son had his tonsils out, he ended up having severe hemorrhaging (think horror movie...blood pouring out of his mouth, screaming and thrashing like he was possessed, blood covering the bed, him, and me, etc). If we hadn't already been back at the hospital, he could very well have bled to death. <br />Handing your child over to a surgeon is hard no matter how big or small the procedure is. Sunshine and Spoonshttps://www.blogger.com/profile/15218542467607737336noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32404651813402919782017-08-10T14:19:54.091-04:002017-08-10T14:19:54.091-04:00You need to explain to Max he'll feel better...You need to explain to Max he'll feel better but it will take awhile. I've had my share of surgeries, including dual hip derotations when I was around his age. It took me close to a year to relearn how to walk with a lot of therapy. If it will help Max in the long run, I say do it sooner rather than laterMattes's Musingshttps://www.blogger.com/profile/00304075309088592046noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-85045542028055642782017-08-10T12:37:49.678-04:002017-08-10T12:37:49.678-04:00Good luck with the surgeries Max! Good luck with the surgeries Max! Max .Shttps://www.blogger.com/profile/10904861794391197803noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28919220762078675272017-08-10T12:12:14.645-04:002017-08-10T12:12:14.645-04:00I hope his surgeries go well. My son has an eye i...I hope his surgeries go well. My son has an eye issue which causes his eyes to turn inwards sometimes. He can have surgery to correct it, but per his ophamologist, it's only cosmetic. If there was a functional reason for it, I would have Buddy do the surgery. Since there is no functional reason, we're waiting until (if) Buddy decides he's bothered by it and wants to correct it. Long story short, I think you are making the best choice for your son. The drooling bothers him, and you are giving him a chance at fixing it. <br /><br />It's so hard when our children become aware of their differences. They go through so much physically. It's not fair that they have to deal with emotional consequences too. Anonymoushttps://www.blogger.com/profile/08934681894981552670noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-10791599717693525022017-08-10T11:48:26.492-04:002017-08-10T11:48:26.492-04:00You are, of course, handling this in the most thou...You are, of course, handling this in the most thoughtful way possible. We will all be sending healing thoughts. And it's wonderful that Max was able to process this--ask about drooling, get more information, then decide he wants to stop. Very empowering for him. And reassuring for you, as you make these decisions, I'm sure.Anonymoushttps://www.blogger.com/profile/07930796856020938418noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-61525238875834630952017-08-10T11:04:07.602-04:002017-08-10T11:04:07.602-04:00We did a different surgery to help my son (also na...We did a different surgery to help my son (also named Max) with his drooling (removed some of the salivary glands and kind of blocked off others - something like that, but it wasn't tympanic). It was very successful, and it's been a *huge* quality of life improvement to not have the smelly bandanas and soaked shirts, plus facial irritation. It's been a few years, and while he does have some dry mouth, he still produces adequate saliva for eating and regular function. He was too young at the time to participate in the surgery decision, but we're glad we did it.<br /><br />Good luck!Kenhttps://www.blogger.com/profile/00084596167132333149noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-30679731082820926482017-08-10T10:23:00.349-04:002017-08-10T10:23:00.349-04:00Best of luck with your surgeries Max! Best of luck with your surgeries Max! Kathrynnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52062772634284550672017-08-10T10:22:12.873-04:002017-08-10T10:22:12.873-04:00Best of luck for both surgery Max. Hope you will r...Best of luck for both surgery Max. Hope you will recover quickly:)))Tranhttps://www.blogger.com/profile/06018988301651335172noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-9789610769627790402017-08-10T10:20:32.948-04:002017-08-10T10:20:32.948-04:00My son is almost 3 and has spasticity on his left ...My son is almost 3 and has spasticity on his left side. I am concern that he will has contracture as he grow even when his therapist says his tone is not that bad and he already wear afo for his ankle. What is your thought on SDR (selective dorsal rhizotomy)?Tranhttps://www.blogger.com/profile/06018988301651335172noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67275370262648183862017-08-10T10:10:52.456-04:002017-08-10T10:10:52.456-04:00One thing I learned while getting my kid through 1...One thing I learned while getting my kid through 12 surgeries in three years (which ranged from 12-hour open hearts to 4-hour laparoscopic deals): The only "minor procedure" is the one happening to someone else's kid. Figuring out if and when to do these operations is so difficult, and there has always been a moment during post-op recovery when I've wished we just never started. But -- it sounds like you've done a fantastic amount of research and thoughtfully weighed up the risk/reward ratio and made the best decision you can. I especially love how you included Max in the process. (That's something we haven't been able to do yet for Violet, but I think a lot about how to navigate in the years ahead.) When it comes to preparing him for the big day: Doctors kits are fantastic (and yes, letting him "operate" on you, because it gives him control; we also do this a lot now to help V process what she's been through). For her last big surgery, I also made a photo book of all her previous ops, including pictures of her in the hospital and our favorite parts of the hospital. She loved it and I think it did make things feel a little more familiar. Taking a tour of the hospital ahead of time can accomplish the same thing. And then talking through what to expect and what will happen when, in as much detail as you can -- which I'm sure you're already all over. Good luck -- will be rooting for you all! Virginia Sole-Smithhttp://virginiasolesmith.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-21602602940462894452017-08-10T09:40:18.956-04:002017-08-10T09:40:18.956-04:00Best of luck to Max and I hope he has a speedy rec...Best of luck to Max and I hope he has a speedy recovery! We will keep him in our prayers and hope that all goes well<br /><br />Paige<br />http://thehappyflammily.comPaige Flammhttps://www.blogger.com/profile/12611640192527041942noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-50515736690660317812017-08-10T09:38:55.131-04:002017-08-10T09:38:55.131-04:00We did an SPML with alcohol block with Dr. Nuzzo f...We did an SPML with alcohol block with Dr. Nuzzo for Josh a few years back. The results were really great and bought us time before we did the full osteotomy. Hoping for wonderful results for Max as well!! Jamiehttps://www.blogger.com/profile/07851626639866417704noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-36811586023813685212017-08-10T08:48:40.796-04:002017-08-10T08:48:40.796-04:00I have so many thoughts on this one but I am also ...I have so many thoughts on this one but I am also so many years behind you on the road. My son who has CP is 5. We are trying Botox for his spasticity (more dystonia than spasticity really) which is why a surgery like Max's would work for us. I've also been told that Botox can help with drooling, though of course it's not a permanent solution. He's had so many surgeries this far, I think I have PTSD from it all. I understand your fears and I appreciate your due diligence.Jamiehttp://mom-gene.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-41056352903078197842017-08-10T08:43:41.644-04:002017-08-10T08:43:41.644-04:00I'm glad Max was able to express to you about ...I'm glad Max was able to express to you about the drooling. But still hard decisions to make as parents. <br /><br />Luke (14) still has 1 more surgery associated with his cleft lip/palate. Part is functional, part is cosmetic. Plans haven't been made yet, but I wonder if it is fair to do the cosmetic because I think it needs to be done. Janetnoreply@blogger.com