tag:blogger.com,1999:blog-7707332630639933436.post523201521831414850..comments2024-02-21T07:58:44.752-05:00Comments on The Great Umbrella Heist: The one where I'm frustrated with a doctorSarahhttp://www.blogger.com/profile/09856102708963900512noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-7707332630639933436.post-51429466989777050132011-02-06T16:59:02.174-05:002011-02-06T16:59:02.174-05:00Hi Sarah,
I am just catching up your recent posts ...Hi Sarah,<br />I am just catching up your recent posts and I want to say that I think you're and amazing mom and much more patient than most... I think most people would agree that Dr. X really hasn't done anything to deserve a second chance. Also, regarding wondering if people would enjoy reading these types of posts. I work in Labor and Delivery at a big Boston Hospital, so I love anything medical. But also I always want to ask questions about Anna and her SB, but I never know if that is appropriate. Thanks for sharing your "real life" story. Anna is very lucky to have made the strides she has in her short 3.5 years and she's just as lucky to have such a wonderful mom.TanyaMom23https://www.blogger.com/profile/07687074322962191789noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-87095733810654658022011-02-04T20:05:38.531-05:002011-02-04T20:05:38.531-05:00Leigh - Thank you so much for your comment. I'...Leigh - Thank you so much for your comment. I'm glad to hear that you've had success! It gives us hope.Sarahhttps://www.blogger.com/profile/09856102708963900512noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-83468932367604005842011-02-04T16:25:31.045-05:002011-02-04T16:25:31.045-05:00Hi Sarah-
I've been following for awhile, but ...Hi Sarah-<br />I've been following for awhile, but this is my first time commenting. My two year old son also has SB. We just started a bowel program and it, so far, has worked SO SO Great! I am so glad that we took this step. We actually talked with our urologist about it and he wrote the script. My email is leighegibbs@sbcglobal.net I hate to get too personal in a comment, but if you want any info on what we do, I'd love to share it. :) Oh, and he hasn't had any "poo accidents" since we've started this.Leigh and Andyhttps://www.blogger.com/profile/07582399854757717450noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-27206292301338194602011-02-03T16:13:08.807-05:002011-02-03T16:13:08.807-05:00What I love about spam comments is that I can dele...What I love about spam comments is that I can delete you and report you. Don't mess with me especially on posts like this.Sarahhttps://www.blogger.com/profile/09856102708963900512noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-37452399184496405082011-02-03T02:56:56.243-05:002011-02-03T02:56:56.243-05:00This comment has been removed by a blog administrator.Colon Cleansershttp://www.supercoloncleansers.comnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-16156662573004456002011-02-02T00:01:59.164-05:002011-02-02T00:01:59.164-05:00I read every word you write. I don't even have...I read every word you write. I don't even have little kids, but I stumbled across your blog and have been hooked ever since. You do a great job of writing and your photography is stellar.Carolnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-89661168533103739912011-02-01T02:09:37.883-05:002011-02-01T02:09:37.883-05:00We switched GI docs recently because I felt like m...We switched GI docs recently because I felt like my little one was being treated like "one of the masses" and I was being treated like an idiot. It was the best decision ever. Little one is getting great care (the difference is absurd, I had no idea how bad the entire office was until we found a new one!) and I am happy too. Good luck in advocating for your daughter! Sometimes it's a full time job in itself!Michellehttps://www.blogger.com/profile/18255139969052461551noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-16343740348255009002011-01-31T14:59:13.759-05:002011-01-31T14:59:13.759-05:00This post hit close to home - when we were dealing...This post hit close to home - when we were dealing with Penny's issues I felt the same way. One thing I made the doctors do was (1) talk to me on the phone AFTER appointments so we could rehash and I could ask questions more coherently and (2) required all specialists (ENT, pulminologist, GI) talk to EACH OTHER. I asked to be copied on reports to each other and to our pediatrician. I should also not that BCBS did call asking me if I wanted a medical advocate so maybe you might want to look into that. Finally, I agree with you on constipation! I got a lot of flack about this with Penny when I finally just stopped trying to "deconstipate her" (and later Josephine). Every kid is different and if they are going who really cares...<br /><br />Good luck with everything, and I'm so glad you felt comfortable enough to post (I've always wondered how you view things when you drop "cath"ing into so many posts so nochalantly.Mommy, Esq.https://www.blogger.com/profile/00228638552586921228noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-32103914638817887342011-01-31T14:09:45.524-05:002011-01-31T14:09:45.524-05:00I love these kinds of posts! I feel like it makes...I love these kinds of posts! I feel like it makes me much more sympathetic and understanding to other kids. It gives a much more complete picture.<br /><br />We had a similar issue at the eye doctor. There was snow and it caused everyone (but us! we were on time!) to be late. I think that time he was running about an hour late. So annoying! At least they had stickers to keep my daughter entertained.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-23303276180989274222011-01-31T13:14:52.893-05:002011-01-31T13:14:52.893-05:00I've been following - and have no idea if I...I've been following - and have no idea if I've commented or not. But your pictures are wonderful - and your kids absolutely beautiful!<br /><br />It's very frustrating when you don't have a doctor that listens to you, or that you can trust. At our SB clinic we see whatever urologist that is on call that day and it's frustrating when it seems like they don't even read the chart before coming into the room.<br />I wouldn't give your guy another chance, but start looking at a second opinion right now.<br /><br />On a completely unrelated note - and really off topic. I am a L&D nurse and recently cared for a woman who's child was born still as well. I think your phrase is very elequent and has so much more meaning than simple still birth. Just wanted to say that. I will be using that phrase for now on.Amanda_in78https://www.blogger.com/profile/05638290124749954482noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-11805592545179001922011-01-31T02:58:41.257-05:002011-01-31T02:58:41.257-05:00I will always be here to read what you write about...I will always be here to read what you write about your beautiful girls!Janhttps://www.blogger.com/profile/14956702385571303197noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-69726783778720064262011-01-30T22:21:58.594-05:002011-01-30T22:21:58.594-05:00Sarah, wow! That sounds soo incredibly frustrating...Sarah, wow! That sounds soo incredibly frustrating. While I do not have my own children yet, I am have been diagnosed with 11 chornic health conditions myself, and fight this regularly as it pertains to doctors. It is a very sad reality to those of us who have to deal with this regularly. My first gut instinct was to tell you to, make a second apt with another doctor now. Then actually GO to both and see which one you prefer. That way if this doctor is still not on par for the course, you have already established yourself with another doctor and don't have to wait months again for yet another apt. with yet another new doctor. This is soo frustrating, and sadly enough a reality that we are faced with daily. IF this current doctor changes his attitude well then you can decide which doc you like more and continue your care there. I've done this multiple times in the past for myself when it comes to specialisits. BTW, this is YOUR blog. Therefore, you can blog about whatever you want, whenever you want. If others don't like it they can go some where else and read ;) This is your place to vent, and share your story, and life isn't always roses! So please feel free to speak of your childs health condition as much as you wish because it is YOUR reality. My reality is diabetes, kidney issues, lung issues, fibromyalgia, and so much more. So blog as you may...it is your time to talk and vent, and us regular readers love it ;) I wish I had more words of wisdom, but I am suddenly fresh out. However, I am sure that whatever you decide to do is the RIGHT decision for you and your little one ;) God Bless you sweetie!Jonihttps://www.blogger.com/profile/10175171461996268039noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-48908314146513735832011-01-30T22:04:52.825-05:002011-01-30T22:04:52.825-05:00I have been following your blog for a couple month...I have been following your blog for a couple months now (i'm a fellow bumpie from the multiples board) and I must say i absolutely adore your girls. I have only commented once or twice, but I check your blog at least once a day to see if you have updated. <br /><br />I, too, have wondered how SB affects Anna and your family on a daily basis so this individual post truely did interest me. <br /><br />I also agree that you should change drs. I'm sure you can find someone who actually attempts to care about Anna's condition. That dr didn't even make an effort to care it seems, and that's not someone I'd want treating my child and I'm sure you feel the same. What a peach he seems to be! <br /><br />I hope you continue blogging for a VERY VERY long time. You and your girls keep me so entertained :)Jaimehttps://www.blogger.com/profile/16169304309640823556noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-70709177016614949692011-01-30T18:34:02.361-05:002011-01-30T18:34:02.361-05:00Hi Sarah -
Wow, I think I'm a little famous (...Hi Sarah - <br />Wow, I think I'm a little famous (assuming I'm the mom with the OTHER girl who saw Dr. X)! :-) <br /><br />You should make an appointment to see Dr. Sam Nurko at Children's. He's really great (and I've seen them both) and his nursing team is excellent and they do a lot of med/program tweaking on the phone if you need it. <br /><br />We're really comfortable with him - he takes a lot of time to talk and even sat and talked through the issues that I had with our appt with Dr. X the last time we were in. Before you ditch Children's entirely, you should maybe give him a call. <br /><br />I think I emailed you my phone number a while ago - feel free to call if you want or shoot me an email (I'll send you one now so you have my email in your inbox). <br /><br />One thing to keep in mind is that it's probably good to have realistic expectations. I mean, I figured once we had this plan in place, we'd be good...right to undies and she'd be clean all day. Well, I think I've come to realize that the occasional accident (every few months perhaps) is something that might be in her future and we're going to have to come up with solid plans for dealing with that (clothes at school and good self-confidence training!). <br /><br />Good luck - it's so frustrating, but we're getting there and have a really solid plan (which is important I think). We're back to having a fair amount of success with the program we're on. <br /><br />Lilly's mom AmyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-10039519643701062652011-01-30T17:20:09.930-05:002011-01-30T17:20:09.930-05:00Hi Sarah,
I haven't read all the comments yet ...Hi Sarah,<br />I haven't read all the comments yet and it took me two sittings to read the post because, well, kids were beckoning, but the point to this is I had to read how it ended. No I don't have a child with SB, but I read your blog every day because I am drawn to it. The good, the bad, the hard times, the great moments you post, reading it all, seeing someone else's life in all it's glory and mess, well, it makes me feel not so alone in this parenting thing.<br /><br />As for your post, specifically, trust your instincts. If you are not comfortable with the doctor, if he is not getting to know your child in detail (medically, physically speaking), if you have ANY doubts about him, CHANGE doctors. Our guts are always right. Like I said, I have no experience with SB, but my daugther had plagiocephaly and it was so bad by the time she was 2 months old that I KNEW it was wrong and needed attention immediately. The doctors kept telling us to wait, to position her, to keep her looking the other way...on and on. We kept telling them that we were already doing that, from birth. Unfortunately, I listened to them instead of my gut. By 6 months old, I was done listening and demanded that we get the referral. We went and it really was just in time because now there was deformation happening in her forehead, eyes, ears. She got a band and it helped incredibly, her features are all perfect, my girl is really beautiful, but the back of her head on the right is still flat. Thank goodness she is a girl and her hair covers it, but when it's wet, it's visible and it bugs me to no end. What if I went sooner, would it be better? <br /><br />Don't wait if your gut is screaming at you. Trust yourself. And God bless that Anna is lucky. It doesn't make others unlucky. It isn't wrong to say that. It's being thankful in a hard situation where it could be worse. And thank goodness it isn't. And there is nothing wrong with that.Kaylahttps://www.blogger.com/profile/12826420697691636347noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-82739588828890339262011-01-30T17:09:01.588-05:002011-01-30T17:09:01.588-05:00Oh my goodness! I couldn't believe when I cam...Oh my goodness! I couldn't believe when I came on here today and read all of your comments. Thank you all for your support and letting me know what you think. I have some other posts regarding Anna's SB that I need to post.<br /><br />We are in Boston and have access to several major hospitals. We are going to contact Anna's pedi and get a referral to GI specialist with another hospital.Sarahhttps://www.blogger.com/profile/09856102708963900512noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-62841530873647384672011-01-30T16:30:19.199-05:002011-01-30T16:30:19.199-05:00hi sarah. i read your blog EVERYDAY!!! and i lov...hi sarah. i read your blog EVERYDAY!!! and i love reading about your life and seeing photos of your beautiful little girls. i just wanted to say that this post really made me understand more about anna and about spina bifida. i think it was one of the best posts you have written. you are a wonderful mother sarah, your 4 little princess's are so fortunate to have you as their mummy. kindest thoughts, shirleyswwnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-771228281712653382011-01-30T15:17:45.644-05:002011-01-30T15:17:45.644-05:00I am actually very interested in reading about Ann...I am actually very interested in reading about Anna's Spina Bifida and wish you would post more about it. <br /><br />I understand that you "cath" her several times a day and belive it or not I Googled a description of this and could not find a decent description of what this entails. I am honestly just curious about the procedure and all that it entails. <br /><br />Like I said, I find it fasciating to read about this issue (SB). Reading about your family is fascinating to me and this is a big part of Anna's life and your life. <br /><br />Please keep posting about this stuff. <br /><br />CarrieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-50544100103046634342011-01-30T10:37:55.174-05:002011-01-30T10:37:55.174-05:00I loved reading this post. I love reading all your...I loved reading this post. I love reading all your posts. I feel more educated about SB now. Thank you and good luck with Anna's Dr.The Cooper'shttps://www.blogger.com/profile/02440310656633315650noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-62420179335709933442011-01-30T10:06:17.824-05:002011-01-30T10:06:17.824-05:00There must be something in the air lately. I had ...There must be something in the air lately. I had an incredibly frustrating GI specialist appointment for my son this week. If I were to blog about it, my title might be "The one where I almost decked a resident". I hope that Anna's doctor gets his act together. Good idea about starting a notebook; I wish I had thought to do that!Sinéhttps://www.blogger.com/profile/02587898417427439041noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-20646495508733515442011-01-30T10:03:45.728-05:002011-01-30T10:03:45.728-05:00Sarah, I read and I comment often because I think ...Sarah, I read and I comment often because I think Moms like knowing their post aren't falling on deaf ears. I comment even more when I read a heart felt honest post like this. I urge you to listen to your gut and intuition, trust me... if that little voice is telling you this doc just isn't right for Anna... he probably isn't. I also know you are a smart lady and know how to handle situations like this. Good luck!Tracyhttps://www.blogger.com/profile/13255752597290390303noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-38939059574893198762011-01-30T09:17:24.134-05:002011-01-30T09:17:24.134-05:00I have been reading your blog for about a year now...I have been reading your blog for about a year now and this is my first time commenting. I always wondered what Anna (as well as you and Rich) has to go through with SB. Thanks for posting this, it was very informative and helps me understand SB more. It sounds like Anna is doing well compared to other children her age, which is positive. I agree with the other readers - find a new doctor. No one knows your child better than you. <br /><br />Love your blog and your girls are sooo cute!Kellynoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-22700203396977623492011-01-30T08:47:26.654-05:002011-01-30T08:47:26.654-05:00Thank you for sharing your life with us. I often ...Thank you for sharing your life with us. I often wondered about little Anna's condition. I don't comment often but always read and I love the pics of your beautiful girls!Karihttps://www.blogger.com/profile/15360931454491596736noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-63033990446542994092011-01-30T08:23:22.698-05:002011-01-30T08:23:22.698-05:00Sarah....this is probably one of my favorite posts...Sarah....this is probably one of my favorite posts of yours. I have always wondered about Anna's SB and how it affects her on a daily basis. <br /><br />I am in the same boat with the others who have said to trust your instincts and go with another doctor. Why put Anna through another potentially useless appointment with this guy? Maybe the nurse at Anna's urologist's office could recommend someone? <br /><br />I've been reading your blog since you mentioned it with the MoMs board. I love hearing about the joys of parenting and what I can expect when L&M reach the same milestones...and boy do I understand the sleep issues.<br /><br />Thank you for sharing your life and beautiful girls with us.<br />~DeniceAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-18484873961684969492011-01-30T02:55:36.125-05:002011-01-30T02:55:36.125-05:00i actually like these posts the best (with a pic o...i actually like these posts the best (with a pic of course :))<br /><br />I would go to a new doctor now - I wouldn't even wait.<br /><br />Then again I'm hugely impatient!Marcia (123 blog)https://www.blogger.com/profile/15581613927187600748noreply@blogger.com