tag:blogger.com,1999:blog-7915600.post3393427141554691327..comments2023-10-29T08:13:44.434-04:00Comments on Micro Preemie Twins: The Story of H & E: Always More QuestionsBilliehttp://www.blogger.com/profile/10589229199716201638noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-7915600.post-31205343666902907572007-09-27T04:42:00.000-04:002007-09-27T04:42:00.000-04:00I am sure you have been told this before by now, b...I am sure you have been told this before by now, but I had to put in my two cents too, since I have used both the Benecalorie and the Benefiber. I used to give the boys a tablespoon of the Benecalorie twice a day in their food (which comes out to a "cup" of Benecalorie each a day. Expensive but very worth it.<BR/><BR/>You can get both at Walgreens.com, and you can get them paid for (reimbursed) by Medicaid if you have the right forms (ask your Dr how to get them) and maybe even get insurance to cover it??<BR/><BR/>We get a prescription for Miralax so we do not have to pay for the Benefiber out of pocket, but the benefiber is more natural (it just requires more of the stuff to get the same results as the Miralax). I can SO tell if they skip a day and it keeps them regular without being too messy (The prune Activa yogurt is REALLY efficient too, the activa yogurt works great in any flavor but the prunes- whew!)Anonymoushttps://www.blogger.com/profile/16466272950880850478noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-11945908615878983712007-09-24T22:01:00.000-04:002007-09-24T22:01:00.000-04:00Just wanted to chime in and say that if you haven'...Just wanted to chime in and say that if you haven't found a place for the Bene- products, let me know because Stacey is a dietitian and has a bunch of phone numbers for suppliers in her office. She also told me to tell you that you might be able to get a prescription for it and get it covered by insurance.Kimhttps://www.blogger.com/profile/04299620492056451965noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-28882040046397404252007-09-22T17:47:00.000-04:002007-09-22T17:47:00.000-04:00Sounds like a thorough review. It is so hard to m...Sounds like a thorough review. It is so hard to make decisions about what is best..for each kiddo, for you. I am realzing its OK to say 'no' to a doctor's advice. David isn't wearing hearing aides. We tried it for a good six months and he hated it. So, oh well. We also haven't taken advantage of a couple surgeries reccommended for David. I think there is no right answer for everybody, just the right answer for YOUR FAMILY. And of course, you can always try something and change your mind. And although I am not a doctor, you are doing an amazing job with these sweet girls. Sending you hugs!Lisa Leonardhttps://www.blogger.com/profile/09000122580195871946noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-26709799536589126602007-09-21T00:21:00.000-04:002007-09-21T00:21:00.000-04:00Wow, that is a lot to take in but a lot of good in...Wow, that is a lot to take in but a lot of good information as well.<BR/><BR/>I was just thinking the other day, that the early years are so difficult because you spend the vast majority of time trying to do everything so that your kids can "be all they can be." It's good but it can be exhausting for you and for them and at some point you find the right balance between doing things to help them and having some fun and a good life. You have always done an amazing job with both of them.<BR/><BR/>Dear Son has GI issues and uses both Prevacid and Miralax. The Miralax works very well but it took some time to find the right dose. <BR/><BR/>As for weight issues, Dear Son was thin as a child and I never thought he was going to gain weight. I bought slims until he was 11 years old. I didn't worry about it too much since it made him easier to get around physically and I just tried to make sure he got his five fruits and vegetables every day and ate as healthy as I could. I'd pureed fruit with the oatmeal, sneak in vegetables with his dinner and just do the best I could. He hated vegetables so I always had to work hard at that. I tried to make all of his food versus anything pre-packaged and that helped. He wore slims until he was put on PediaSure for the g tube feeds and then the dietician overcorrected and prescribed too many calories and he gained 50 pounds in a year. Just do the best you can.<BR/><BR/>As for swallowing, Dear Son used Thick-It which worked the best. The best price was at Target; some of the other places were always out of it. With Target, I ordered it at the Pharmacy and they called me when it came in. <BR/><BR/>Oh, the dreaded mini-van. I drove SUVs in lieu of the mini-van. I just made sure to measure the height of the back so that I could get his wheelchair in there. An SUB with a boxy shape or rear usually works well for getting a wheelchair in there.Dream Momhttps://www.blogger.com/profile/18351348027973964625noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-40953078155722891292007-09-20T23:50:00.000-04:002007-09-20T23:50:00.000-04:00Definitely a lot to digest, but that's the joy of ...Definitely a lot to digest, but that's the joy of a multi-discipline doctor. We normally see our physiatrist and orthopedic surgeon at the same visits, and go home with our heads spinning, too.<BR/><BR/>I can't comment on any of the eating solutions, since Ethan's issues with being underweight disappeared magically at 2, and we never knew why or how. We've been using mineral oil as needed for his issues "down below" and have never tried Benefiber. But I'll be curious how it works, if you do try it.<BR/><BR/>We got a gift certificate for a hippotherapy session for Ethan, and once things settle down around here, we're going to give it a shot. I'm not sure how much he'll get out of it, due to his blindness (will it frighten him?) and his level of mental disability, but we figure it can't hurt. I've heard it's fun, if nothing else, and every kid deserves a little fun, even if it's therapy underneath.<BR/><BR/>But I definitely agree with you that there can be too much therapy. Yes, more probably wouldn't hurt. But you don't want the girls to think they need to be "fixed" at any cost, including their own comfort and sanity. (They're practically perfect already!) You need to decide where the line is crossed into too much. Unfortunately, there's no magic number of hours, and you'll have to take it day by day.<BR/><BR/>Ethan just had his second swallow study, and you know what the results were? Same as the first one: "Ethan has trouble with thin liquids, <I>as his parents told us</I>." The GI doc wanted another since it had been a few years, but it seemed like a big waste of time (and our insurer's money) to do it. I suppose the real reason is to make sure the kids aren't aspirating, and like you said, it's not as invasive as some other tests, so we played along.<BR/><BR/>Finally (this is all about me, isn't it?) regarding the van - we finally got a handicapped accessible minivan this year. With Miss Em on the way, we knew we could no longer squeeze the kids into my car. But we also couldn't continue to lift Ethan out of his chair and into a car seat, and vice versa, for every trip (see: no eating issues). He's just gotten too heavy and awkward, and it was becoming a safety issue.<BR/><BR/>I'm not sure what your plans are - if you will just need room to store a chair, or if you want Eden to be able to ride in it as well - but there are a lot of options out there. Our needs were best met in buying a converted minivan right from the factory. We chose not to get one with a lift, but a ramp van, which allows Ethan to be wheeled right in and locked into place in his chair. Of course, for the ramp to be at a reasonable pitch, the entire frame needs to be adjusted, exhaust system moved, blah blah blah. Something like that just wouldn't carry the same guarantee if it happened outside the factory or was done on a used vehicle.<BR/><BR/>The main problem with this kind of van is the cost. You basically have to buy a new van plus pay the nearly $20K conversion cost. We were lucky that friends and family around here threw a benefit for Ethan and raised a good chunk of the cost for us. It's terrible to think that every family that needs special transportation arrangements don't have access to these kinds of resources.<BR/><BR/>In any case, while you have a lot ahead of you, you aren't alone. Your girls are in great hands, and they'll let you know when you've made the right decisions.Metehttps://www.blogger.com/profile/07276808432623125931noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-24557218574706801542007-09-20T03:23:00.000-04:002007-09-20T03:23:00.000-04:00I don't know if this is okay for children but I ha...I don't know if this is okay for children but I have a hard time gaining weight also and I have found 2 things that have helped me. One is Boost. I have tried them all and the best one I have had is in a can and I believe can be covered by insurance. Each can has 360 calories, 14 g fat and 14 g of protein. I also put them in the freezer for about 30 minutes and it is like a choc shake. My 8 step daughter tried it once and said it tasted like choc milk. The plastic container ones do not taste as good.<BR/><BR/>Second is coconut oil. My sister is really into health stuff and it has all good fat. 1 TBSP has I think 125 calories. I add it to fruit for a smoothie and it is like a virgin pina colada. HTH.<BR/><BR/>Also, I've always wanted a minivan. They can be cool. I like the Honda Oddessy. <BR/><BR/>Rachel<BR/>www.tripletbutterflywings.blogspot.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-90648804666210046982007-09-19T23:00:00.000-04:002007-09-19T23:00:00.000-04:00Hey Billie! Wow, appointments like that always le...Hey Billie! Wow, appointments like that always leave my mind whirling. It sounds like this doctor is going to be a great resource.<BR/><BR/>We've tried every calorie booster known to man. The benecalorie is hard for me to find things to mix it in. I would love to hear what you end up doing!<BR/><BR/>As for the minivan -- you will end up loving it, I promise! lol. It was interesting coming to terms with actually owning and driving one! lol -- and yes, you will always be totally cool in my book.<BR/><BR/>As for the intense therapy...it's so hard to know what's right. I do think it's best to take breaks, especially after several weeks of intense therapy. We do lots of extra therapy after Jack gets Botox -- to try and maximize the affects and strengthen his muscles while there's less spasticity. We are going to an appointment on Monday regarding possible surgery (SDR) and I know they suggest months of intense therapy following this surgery. So I'm rambling now and probably haven't helped at all! You will know what's right and both Eden and Holland will flourish (and have already ;) )<BR/><BR/>I agree with the other commenter -- I am so sorry you've got some sort of icky troll! I really wish I knew why this happens. Don't worry so many readers catch on to these kind of things...I am sure they'll go away when they realize people are aware.<BR/><BR/>Take care!!Angelahttps://www.blogger.com/profile/05641799047603535415noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-73608987878919943112007-09-19T22:19:00.000-04:002007-09-19T22:19:00.000-04:00Sari,I've noticed. It's something I can't for the...Sari,<BR/>I've noticed. It's something I can't for the life of me understand, as hard as I try.<BR/>Thanks!Billiehttps://www.blogger.com/profile/10589229199716201638noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-77516079594270947892007-09-19T19:55:00.000-04:002007-09-19T19:55:00.000-04:00Billie - I really marvel at how on top of all thes...Billie - I really marvel at how on top of all these complex issues you are. You are amazing at sourcing resources and equipment and funds as well as advocating to get enough and appropriate therapies for your little cuties. It really puts me to shame at times!!<BR/><BR/>Two things - grapes are excellent for, um, issues.<BR/><BR/>And, I so hear you about the minivan - never thought we would need something like that either. But I heard recently that the mini-van was the new Hummer...just kidding - but you are still cool.Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-42043984480183600022007-09-19T19:44:00.000-04:002007-09-19T19:44:00.000-04:00Billie,Sorry, I read your blog, but don't post. B...Billie,<BR/><BR/>Sorry, I read your blog, but don't post. But talk about being cool, well, I'm going to speak up here. You, Holland and Eden are so "cool" it is suspicious that you are being copied.<BR/><BR/>Your last post had a responder who claimed to have 3 micro-preemies, all under 5, one just 23 weeks, and only 3 days old, with a link to their blog. After a day or two of the baby being on ECMO (I don't even think this is possible, but I'm not a NICU specialist)and having every conceivable (and inconceivable) complication, the blog (which never had photos of actual children) disappeared, and was replaced by 4 little micropreemies, in which the mom had three year old 24 week twin girls, a 2 year old boy (who we find out today is going blind, BTW,) and a 2 week old 25 weeker (another girl) in the NICU in critical condition, but despite all this, she still has time to blog! Again, there are no photos of children, and the mom of this critically ill newborn is prattling on about reflux and weight gain and blindness of her other children. The critically ill newborn is almost an afterthought.<BR/><BR/>The post about the twin girls doctor appointment seems to be regurgitated from your posts about Holland and Eden. I know this is incredibly creepy, but I thought you should know. Click on Chic mom from your last post. The Hattie Madison and William blog is gone, but the new one with the Holland and Eden copycat twins are still there as of an hour ago.<BR/><BR/>Sorry if this is too forward. You really are way cool.<BR/><BR/>sariAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-5598038619966327592007-09-19T18:35:00.000-04:002007-09-19T18:35:00.000-04:00I've had to do calorie studies for my daughter (no...I've had to do calorie studies for my daughter (not a preemie). You don't have to make them eat every bite. You measure out what you put in front of them and note it down, then they eat, then you measure what you've got left over (including scraps thrown on the floor). Then you can work out what actually got eaten. Three days is a long time but when you've finished, you feel such a sense of accomplishment it's like you've written a novel. And you definitely feel like you've done something productive in your child's medical care. (Of course the dietician looked at my laboriously-produced notes for about 0.3 seconds and said "oh that's absolutely fine"...)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-43533154891250903182007-09-19T10:52:00.000-04:002007-09-19T10:52:00.000-04:00I fought the whole minivan mom thing too, but with...I fought the whole minivan mom thing too, but with our triplets it was inevitable. My husband showed up one night with a RED one...like that make it cool. Anyway, I love my minivan now and my ipod plugs into it. Way cool :)Jacolynhttps://www.blogger.com/profile/14966291460929695590noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-33425532503943971502007-09-19T05:28:00.000-04:002007-09-19T05:28:00.000-04:00You know what E (a different one), you do come off...You know what E (a different one), you do come off at a prat. You are right. Your child doesn't have CP and never had CP. Good on you for getting the services for your kid. But you know what, we (my family) did all that. We did conductive ed. My kid cried and cried. We put him through things that his body wasn't physically able to do. And it made absolutely no difference (positive difference anyway - it certainly affected his spasticity in a negative way). You may feel passionate about it, but if you haven't been there, don't make the presumptions. Billie will make decisions for her gorgeous girls cause she is a fantastic mom and knows them best. Cause you know, Eden's happiness isn't going to be affected by what she physically can or can't do at 13. It is going to be affected by how prats react to her and how accepting they are of her. <BR/><BR/>Sorry Billie.Jacquihttps://www.blogger.com/profile/03039454415384297225noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-6611746336316416592007-09-19T04:46:00.000-04:002007-09-19T04:46:00.000-04:00Hi- I was not going to comment, but guess I couldn...Hi- I was not going to comment, but guess I couldn't hold back about my own opinion/experience after reading other people's thoughts here.<BR/><BR/>My micropreemie was a 25 weeker. She never had CP. However, my PT <BR/>(who was the national president for the neurological pt something whatever) had a very different opinion than yours in that more IS better. You are retraining the body with more. Want to learn French? Is is better to practice every day or twice a week? Muscle memory happens with practice.<BR/><BR/>Also, at one point we did 7 therapy sessions a week. 3pt, 2ot, 2 speech. I'm not saying you're doing the wrong thing, but for me, my child BLOSSOMED with bombardment. Yes it was hell. She wasn't in hell, though. It was WAY harder on me than her. The therapists became like aunties to her because were always there!<BR/><BR/>In terms of therapy, the way I looked at it is that I could have her cry now or cry later, if you know what I mean. No matter what, there was going to be some kind of "price", so I opted for the one with potential healing.<BR/><BR/>There were no guarantees anything would work out. That wasn't the point for me. It was doing everything I could while plasticity (of the brain) was still optimum.<BR/><BR/>I hope I don't come off as preachy. Its just- balance. Balance her happiness today vs. at age 13, etc. Sometimes you don't always want to live in the moment. Now that she is happy and secure, you have more space for not great moments in order to potentially gain great things. <BR/><BR/>Really sorry if come off as a prat. Its not my intention- I just feel so passionate about this! -E (a different one)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-69869495228017241452007-09-19T01:54:00.000-04:002007-09-19T01:54:00.000-04:00Who came up with the saying "It will get easier"?D...Who came up with the saying "It will get easier"?<BR/><BR/>Do keep us updated on the Periactin. Cole's eating has gone from bad to worse and have been considering bringing something like that up to the peed again.Ehttps://www.blogger.com/profile/14052197274679639669noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-8439689353894300882007-09-18T21:18:00.000-04:002007-09-18T21:18:00.000-04:00Even in a minivan you'll still be one hot mama (Yo...Even in a minivan you'll still be one hot mama (Your a hot daddy too John!). I'm glad you found a doctor who seems so thorough and took the time to really get to know the girls. I can just picture the look on Eden's face as she's tooling around on her new wheels. Better tell Holland to watch out! Luv you guys! LizAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-74173574830510726482007-09-18T18:41:00.000-04:002007-09-18T18:41:00.000-04:00do minivans come in convertibles?do minivans come in convertibles?Jacquihttps://www.blogger.com/profile/03039454415384297225noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-419121048849399582007-09-18T13:10:00.000-04:002007-09-18T13:10:00.000-04:00Sounds like a VERY good doctor, seems to know her ...Sounds like a VERY good doctor, seems to know her stuff. I am gald that she made time to really go over everything with you. <BR/><BR/>Your girls are adorable, and happy, and so smart-- really, everything will come with time, and of course all of your hard work!<BR/><BR/>You are great parents!Bird's Eye View Photographyhttps://www.blogger.com/profile/08813489889625737678noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-18131813732269675322007-09-18T11:15:00.000-04:002007-09-18T11:15:00.000-04:00Sounds like a good appointment!! I know people who...Sounds like a good appointment!! I know people who have had good and bad experiences with CE. It does seem like A LOT for a young child but you know Eden better than anyone else.<BR/><BR/>I'm going to talk to D's doc about benefiber because she has those same issues.Shannonhttps://www.blogger.com/profile/16787015524264816490noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-35460377797449779182007-09-18T11:06:00.000-04:002007-09-18T11:06:00.000-04:00Can't wait to see your van! You will just as cool ...Can't wait to see your van! You will just as cool as the rest of us now!kristinhttps://www.blogger.com/profile/16995121920765122344noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-45035649559804673412007-09-18T07:51:00.000-04:002007-09-18T07:51:00.000-04:00Get a minivan with a navigator and a sunroof and y...Get a minivan with a navigator and a sunroof and you'll feel better! :)Karen Putzhttps://www.blogger.com/profile/09098620301550608119noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-57722327862612277042007-09-18T07:47:00.000-04:002007-09-18T07:47:00.000-04:00Hi Billie! I didnt get to finish reading your whol...Hi Billie! I didnt get to finish reading your whole entry but I saw where it said that you needed some BeneFiber. I use that all the time for myself and for Hattie. I buy it at the local Kroger. Im sure they will have it at your Kroger too. I just wanted to go ahhead and let you know this so I wouldnt forget to tell you. God Bless.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7915600.post-55506308307357143972007-09-18T07:33:00.000-04:002007-09-18T07:33:00.000-04:00Yep, i agree that a happy life is more important t...Yep, i agree that a happy life is more important than therapy - we found we spend too much time chasing an unattainable goal ("being normal"). But hippotherapy is more fun than therapy (and soo many girls seem to have a "thing" with horses)and really does work. Our son (quad/di cp) really benefitted from it, especially for a good stretch and balance (kayaking is also good) and our daughter will definately do it too. Unlike CE (which is great, but hard work, and i would leave for later) i'd give the horses a try, especially if you can get to a "riding for the disabled" place where staff know what the're doing and it's cheap. These sort of things are fun, and you can take them up with the whole family if you like.Heike Fabighttps://www.blogger.com/profile/06856001856348587649noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-90714172768808954822007-09-18T05:46:00.000-04:002007-09-18T05:46:00.000-04:00What a fantastic appointment! You sure got alot of...What a fantastic appointment! You sure got alot of information out of it. Your girls look happy, what more can we as parents want? I too wish I had that crystal ball.Malhttps://www.blogger.com/profile/17063539316447772555noreply@blogger.comtag:blogger.com,1999:blog-7915600.post-2702072259945047692007-09-18T01:02:00.000-04:002007-09-18T01:02:00.000-04:00You are so totally cool it's not even funny. And ...You are so totally cool it's not even funny. And John is cool and your girls are WAY cool.<BR/><BR/>I only have a sec 'cause I need to get to sleep, but I wanted to mention that I just found this new yogurt at Wholefoods called Mediterranee Liberte that's 260 calories for 6 ounces. 8% fat and totally un-bikini proofed. Unless you are a micropreemie. Hallie LOVES it (well, the strawberry variety, anyway) and it's super rich looking. Might be a nice complement to the Benecal.<BR/><BR/>I agree with everything your PT said about the more is sometimes less. Maybe for an older kid, but 6-20 hours a week of PT? That would totally turn me off. At that kind of level, it's so much work and so little game. I think that Eden is fabulous and that you guys are, too.abbyhttps://www.blogger.com/profile/03403145277760263562noreply@blogger.com