tag:blogger.com,1999:blog-2600278351249979209.post7323200036893532460..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: because I need to remember - Part IIDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-2600278351249979209.post-17600354989681755282011-09-17T09:02:34.477-07:002011-09-17T09:02:34.477-07:00wow! thank you for your courage in sharing & I...wow! thank you for your courage in sharing & I'm so moved and impressed by your strength. my cousins son has been suffering from seizures since early childhood & is now not able to relate with others much at all- I'm so thankful you have had a miracle- wishing they had found him his. (i've always just loved him so - he's had a very sad story) God bless these babes!kelli- AdventurezInChildRearinghttp://www.adventurezinchildrearing.comnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-4694947075278907672011-02-01T20:34:07.828-08:002011-02-01T20:34:07.828-08:00Wow.
It's truly amazing, isn't it?
I stol...Wow.<br />It's truly amazing, isn't it?<br /><br />I stole your pretty pastel brain diagrams as I've been looking for some. Hope you don't mind.Don't worry! I didn't pirate Trevy's :)Mrs. Mhttps://www.blogger.com/profile/02626193534014237894noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-14740835828429543522011-01-26T04:22:28.285-08:002011-01-26T04:22:28.285-08:00Well we were just working on 'cortical dysplas...Well we were just working on 'cortical dysplasia' or our working title 'dodgy bit' :)<br /><br />Sinead is so right both about the blood vessels, i hadn't thought there would be any/so many there & about it coming out whole, that must be some serious surgery those guys do.<br /><br />ktxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-767738228609329042011-01-25T16:37:48.565-08:002011-01-25T16:37:48.565-08:00kt...did you not know about the tumor before surge...kt...did you not know about the tumor before surgery? <br /><br />Dora's D...thank you. <br /><br />Sinead...I *heart* your musings.<br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-15862640491043811802011-01-24T20:10:23.864-08:002011-01-24T20:10:23.864-08:00Thinking about it some more: I didn't expect t...Thinking about it some more: I didn't expect the blood vessels. The cute pastel brain never has blood vessels. I also didn't expect it to be in one piece. I imagined them taking out a lobe every few hours or something. Outside of the body, its simplicity hides the ugliness of what this piece of tissue inflicted on the brain and the body. It simply looks too normal for people to comprehend the great danger it posed. That it had to come out. That it was doing little if any good. That a little boy is somehow better off without it. It would be easier to understand if the tissue had horns or tentacles. Forgive my musings.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-809207953436761542011-01-24T11:03:06.705-08:002011-01-24T11:03:06.705-08:00Thank you. You are inspiring...and he must be what...Thank you. You are inspiring...and he must be what you proclaim!Dora's Daddyhttps://www.blogger.com/profile/04703516543301383104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-81105829970101810292011-01-24T08:18:22.975-08:002011-01-24T08:18:22.975-08:00Thanks D - don't think we've really absorb...Thanks D - don't think we've really absorbed it, so used to hearing bad news I guess.<br /><br />Actually studying it a bit more, it does look 'smoother' so that may give a clue to dysplasia.<br /><br />H's pathology came back as 'Dysempbryoplastic Neuroepithelial Tumour' or DNET for short.<br />Google shows it to be a non-proliferating NOT cancer type of tumour that grows in proportion with the body. They will continue to MRI & EEG him yearly for a while to check that no more tiny ones are growing as he grows. Nothing to be seen on October's EEG :)<br /><br />kt xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-58566704775037501102011-01-24T04:55:35.754-08:002011-01-24T04:55:35.754-08:00Marcia...in it's own weird way. Sharing is hea...Marcia...in it's own weird way. Sharing is healing. For me. <br /><br />Elaine...I grant you stealing rights. And it's true. Part I was VERY emotional to draw out. I don't think...really think...about our time in the hospital often. Yet somehow I felt like I was still frantic and pacing in the back hallway. I can still see the OR nurse's face. She felt terrible. She knew it would still be another 2 hours before we could see him because they hadn't waiting. PICU won't let you see the children until everything is in place. 10 hours in the surgical waiting room...followed by 2 more in the PICU waiting room. The emotions. <br /><br />Jmommy...it is weird. But I'm exactly there. <br /><br />Alicia...Dr. Haroki ran interference with us. I really bonded with him. Even though there is a significant communication issue. But I could feel the compassion oozing from him...and I needed that. Anyway... I have a pic of the grids on his brain. WAY less creepy. :) <br /><br />...dDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-27637250763572835322011-01-23T17:44:52.440-08:002011-01-23T17:44:52.440-08:00I have a picture of Remy's brain...Dr. Asuno s...I have a picture of Remy's brain...Dr. Asuno showed it to us during surgery. I asked for a copy of it, but it is pre-surgery. I feel less creepy now. :)Aliciahttps://www.blogger.com/profile/05177039770059664009noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-33853275408084347142011-01-23T17:16:35.628-08:002011-01-23T17:16:35.628-08:00It's weird to be fond of a brain and at the sa...It's weird to be fond of a brain and at the same time hate it's guts.Jacob's Mommyhttps://www.blogger.com/profile/07290552901950729781noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-2853975642920664692011-01-23T16:39:09.352-08:002011-01-23T16:39:09.352-08:00I was surprised when I saw the pictures of Charli&...I was surprised when I saw the pictures of Charli's brain. I never expected it to be all in one piece. If I can't get a pic of my own, I'm stealing Trevy's...since they are so much alike and all ;)<br /><br />Btw, Part 1 was SOOOO powerful and emotional. You have a beautiful way of expressing yourself. And you are right...I also NEED to remember what she has been through and is still going through. Especially those times where she drives me to the breaking point.<br /><br />Thanks for sharing. There was so much emotions in these last 2 posts. I know it is hard to bring yourself back to **that** day.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-90586274188890281822011-01-23T15:57:35.183-08:002011-01-23T15:57:35.183-08:00AMAZING... absolutely amazing. I LOVE to witness ...AMAZING... absolutely amazing. I LOVE to witness miracles....Thanks for sharing Danielle.<br />Marcia KAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-6187460322838404792011-01-23T15:57:09.795-08:002011-01-23T15:57:09.795-08:00RK...I KNEW you'd be fascinated! I think there...RK...I KNEW you'd be fascinated! I think there is a weird sort of beauty in it. I don't think I could ever take a scalpel and slice into it...but I don't mind looking. <br /><br />...dDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-28361685384568332912011-01-23T15:19:16.474-08:002011-01-23T15:19:16.474-08:00Wow! That is absolutely incredible! It does look...Wow! That is absolutely incredible! It does look like healthy tissue, but what do I know (not being a brain surgeon and all...) Simply amazing on so many levels.R kilbynoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-83289680575490142522011-01-23T14:06:41.937-08:002011-01-23T14:06:41.937-08:00Thanks, Momma GB
...danielleThanks, Momma GB <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-81927147387720495402011-01-23T14:02:46.115-08:002011-01-23T14:02:46.115-08:00I am glad there is a clinic in Boston so that you ...I am glad there is a clinic in Boston so that you can go somewhere with this. He is, indeed, a walking miracle.GB's Momhttps://www.blogger.com/profile/08866513131959998883noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-23804877419150709092011-01-23T13:55:33.494-08:002011-01-23T13:55:33.494-08:00The path report reflects Gray Matter Heterotopia.....The path report reflects Gray Matter Heterotopia...which is a form of Cortical Dysplasia, according to Wiki. However, if I believe my neurologist...it's a different beast. But under the same Malformation of Cortical Development umbrella. You know...the same, but different...sorta thing. <br /><br />Good news though. There is a brain malformation clinic in Boston that we're supposed to be scheduling an appointment with. Hopefully they can give us insight and guidance from here.<br /><br />And just because once isn't enough - I AM THRILLED about H's EEG!!!! <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-11846081513465670452011-01-23T13:35:12.490-08:002011-01-23T13:35:12.490-08:00It is a big pile of brain for sure.
Have they don...It is a big pile of brain for sure.<br /><br />Have they done pathology on it? Any results?<br />Weird how it can look so 'normal' expect something to show its difference, if you know what i mean?<br /><br />kt xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-11267883786423806892011-01-23T13:25:06.493-08:002011-01-23T13:25:06.493-08:00Yes it is.
...dYes it is.<br /><br />...dDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-51628814847731935412011-01-23T13:16:46.161-08:002011-01-23T13:16:46.161-08:00That's a lot of brain.That's a lot of brain.Sineadnoreply@blogger.com