tag:blogger.com,1999:blog-2600278351249979209.post4930642947708933289..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: maybe I'm rightDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-2600278351249979209.post-91055770549284904332009-10-19T06:49:39.038-07:002009-10-19T06:49:39.038-07:00I know you've reminded me many times that we a...I know you've reminded me many times that we are the only voice our kids have. Not that you need a reminder, because Trevy's voice seems to be loud and clear! I'm so proud of you for throwing it out there no matter what kind of response you may receive.<br /><br />We may not wear the white coats or have a fancy medical degree hanging on our walls, but we are the "filters" and inevitably their first "doctors". It's our job to distinguish what issues could be relevant/not relevant, coincidental, or connected. No amount of medical training can surpass a mommy's eye...or gut. You never know when there might be the zebra lurking. I look at it like, the odds of the zebra are small...but then again the odds of having infantile spasms were low too. You never know.<br /><br />I'm so hoping you guys get on the road home soon...Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-92110358601189801662009-10-19T04:25:28.595-07:002009-10-19T04:25:28.595-07:00I wonder if any doctors will ever start listening ...I wonder if any doctors will ever start listening to mom's. Don't they realize that we know our children best and know when things aren't quite right!? Sheesh...<br /><br />But, you had me laughing out loud with the "And can cuss you out in Swahili." comment! You'll have to teach me a few of those words D so I can use them on hubby and have him completely unaware. *grin* BTW...do Toby and Bri speak Swahili at all?Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-43003936913880132072009-10-18T14:52:31.734-07:002009-10-18T14:52:31.734-07:00Danielle...YOU GO GIRL!!!! Mommies know so much a...Danielle...YOU GO GIRL!!!! Mommies know so much about their kiddos and doctors and nurses know it but do not want to admit it. Yep, there are the crazies, but give me a break...I will bet you anything after they've had time to think about it, lay out the time-line just as you have in your blog, they are thinking the same thing (your right...you will not be told - MOMMY GOT IT). I don't know why sometimes they have such a hard time giving moms the credit (and dads too sometimes) they deserve. Who do they get the history from??? Who do they come to with questions...especially when he did have his seizure...to describe it so perfectly!!! They just don't like it when you figure out something before they do....and you caught them way off guard...I just hate it for the kids who do not have parents like you who will STAND UP and FIGHT for their kids!!! TREVY is so proud of you :) I love his hair trim and his smile for GRAMS, I know that melted her heart, as well as yours and everyone who saw it here. Your becoming stronger by the day...Praying your there no longer than you need to be for everything to be figured out and a safe trip home with a healthy Trevy!!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-21768835798707327872009-10-18T14:06:15.430-07:002009-10-18T14:06:15.430-07:0010 months of post-ictal vomiting experience tells ...10 months of post-ictal vomiting experience tells me that there is a nurse out there that needs to spend a little time on the Internet. Perhaps she could ring my daughters pediatrician who spent that time in a state of denial.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-26054385820260803832009-10-18T13:52:06.146-07:002009-10-18T13:52:06.146-07:00Sure, just like teething doesn't cause fevers ...Sure, just like teething doesn't cause fevers and pooping issues. Seriously, you'd think they'd know better by now. Mom's totally know their kid. At a minimum, they should give a contemplative look and say they'll consider it.<br /><br />Good luck with the Trileptal, btw. That stuff put Emma into such a lethargic state, we took her off of it before we hit therapueic levels.Andihttp://wordpress.theparkside.net/emmasgracenoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-74191444791242577572009-10-18T13:22:49.307-07:002009-10-18T13:22:49.307-07:00Jen...and they do!!!!
Marcia...the same RN said ...Jen...and they do!!!! <br /><br />Marcia...the same RN said that parents need to be careful about doing their own research online...because they learn things that aren't true! I was SO shocked AND outraged that I couldn't even respond. While it's true there are some crazies out there...most of us are level headed INTELLIGENT caregivers swapping stories and comparing notes to best advocate for our kids. We're the ones plugged in 24/7 to our children...and their life with seizures. She's lucky I didn't blacken her nose this morning. <br /><br />Elaine...I DO know! I keep assuring them we have a FAB children's hospital back hooooome! Honestly...if it weren't for that pesky seizure last night I would just dismiss his vomiting as a random getting over brain surgery issue. But the behaviours he had pre-seizure yesterday are very similiar to how he was acting before each time he got sick. It was just "weird" and irritable. We just chalked it up to his tummy was getting upset. But now...we're pretty convinced there was some sort of "seizure" activity going on. Especially since the Dilantin levels have been up...we've had NO vomit...and NO weird behaviors. All that said...our home neurologist can handle seizures with us!!! They aren't discharging us now until at least Tuesday...because he's not even at therapuetic dose of Trileptal until tomorrow. And they want to make sure he keeps it down before pulling the IV. Uuuuuugh. Like I said...if it weren't for that pesky seizure! btw...any EEG info?!?! <br /><br />xoxo everybody<br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-53185338476164315692009-10-18T13:11:30.677-07:002009-10-18T13:11:30.677-07:00Sophie had issues with vomiting post-op. Sophie h...Sophie had issues with vomiting post-op. Sophie had issues with getting her Dilantin and Depakote levels post-op. That is why we didn't leave until Sunday (Day 9 post-op). Once we hit that 24 hour mark of no vomiting, we were out of there. Afraid she was going to vomit again. But we just HAD to get out of there. I am sure you know why. I knew I had a great hospital (along with a team of neuros that knew her case) back home to rely on if we needed it.<br /><br />Not that I am trying to tell you to do anything. This is just our story. And I am just hoping that things turn around for Trevy so you all can get out of there soon but when the time is right. Which probably felt like ages ago.<br /><br />By the way, NOTHING is a fairy tale in the seizure world!!!Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-39152634620764003942009-10-18T11:57:29.309-07:002009-10-18T11:57:29.309-07:00I think you are one of the smartest mommies I know...I think you are one of the smartest mommies I know!! If those doctors knew what was good for them, they would listen and follow up with that idea.....<br />It certainly is an interesting theory and I do hope they take you seriously. (they probably just wish they would have thought of it themselves!!!!)<br /><br />And for that so called "neurology nurse".....WHAT the HECK??? She apparently needs to spend a little more time learning about what she deals with every day.....<br /><br />hang in there girl...and teach them all something while you are there!!!!!hannah and blitzenhttps://www.blogger.com/profile/10181537656327375501noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-86608627695412640952009-10-18T11:22:21.514-07:002009-10-18T11:22:21.514-07:00Docs should NEVER doubt mommy intuition!Docs should NEVER doubt mommy intuition!JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.com