tag:blogger.com,1999:blog-2600278351249979209.post8891187177517615911..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: globally speakingDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-2600278351249979209.post-22320523127905791492009-09-28T23:27:11.355-07:002009-09-28T23:27:11.355-07:00It's bizarre isn't it? That feeling of gas...It's bizarre isn't it? That feeling of gasp, can't get the air, hate to hear the words yet at the same time thanks to those who said the words and reinforcing what I already know yet sometimes find myself talking myself out of. Does that babble make sense?<br />Hug your boy. Love him...as you do so well...know you are doing your absolute best for Trevy.<br />I wish you'ld had a stroller! I hate those moments too. I've even been putting Bup back in the sling a little...which is amazing for Mr. 40lbs...but goodness it's better than nothing when a stroller/wagon etc is nowhere to be found. You think all this carrying of little men would make me super svelte...hmmmmm...:)<br />Anyway, Danielle, you're awesome...an awesome mom, advocate and woman. Put that in your heart & hold tight.<br />Hugs,<br />MargoMrs. Mhttps://www.blogger.com/profile/02626193534014237894noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-90649365653194544122009-09-28T20:15:34.664-07:002009-09-28T20:15:34.664-07:00Frankly, I wonder everyday, and resolve it with pr...Frankly, I wonder everyday, and resolve it with prayer. (Some) Prayers answered. <br /><br />BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-61786169796150114692009-09-28T09:01:13.539-07:002009-09-28T09:01:13.539-07:00I'm so glad you were able to draw something go...I'm so glad you were able to draw something good from this experience. I can't go get Austin evaluated. I just can't. I haven't even taken him to a developmental pedi. Just can't do it. It's killer just to know what I know. I see it without him being around other kids, and I'm not a qualified developmental professional. <br /><br />But, I think it's great that you went ahead and got it. It will just end up showing you how far he has come after surgery. And he will take off. That 12 month level left in the dust as he learns!<br /><br />I love you guys! And I CANNOT wait until you're posting "another seizure free day for Trevy!"!!!!Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-18738769703099303492009-09-28T06:28:39.799-07:002009-09-28T06:28:39.799-07:00This is one subject I can relate to. When Marissa ...This is one subject I can relate to. When Marissa turned 4 and her pediatrician recommended we have her evaluated because she wasn't talking yet, I thought immediately that she was fine and that the doctors would say that she's actually ahead of her age bracket since I was completely impressed that she could complete a 50 piece puzzle meant for 7-10 year olds on her own. Boy was I floored when they said that she was delayed and was testing at a 1 1/2 to 2 yr old level!!! I felt so guilty. Like I had somehow let my child down. She didn't have other kids to play with, she didn't talk, but she got what she wanted and communicated with her father and I without a problem. I never once thought that no one else would be able to understand her.<br /><br />She received another eval last year at the end of 1st grade and she's made some remarkable strides in the short 3 years since all this began. The director of the CPSE at her school still marvels at how far she has come from that little girl who barely even talked when she first started school. And that was even after a year and a half of preschool. <br /><br />Boy was he surprised by Haylee this past summer when she was up for evaluation and saw that she scored above average for girls her age. Yup, I got a smarty pants in my family, and she lets us all know it too. *smiles*<br /><br />I'm positive that once Trevy is rid of these terrible seizures that he will start reaching those developmental milestones without a problem. He'll soon be driving you crazier than you thought you could get and you will look back and marvel at how far he has come and be able to laugh in the face of IS.Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-20256968051758808852009-09-28T05:40:34.122-07:002009-09-28T05:40:34.122-07:00Worry about one step at a time... get Trevy SF, th...Worry about one step at a time... get Trevy SF, then work on the development. Remember, he's still young and his brain is very elastic. He has time to learn and catch up.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-30266557685816312922009-09-27T21:17:13.409-07:002009-09-27T21:17:13.409-07:00I hate evals, but we only get them through early i...I hate evals, but we only get them through early intervention. I don't think I could stomach extra evals. You're a stronger woman than I.<br /><br />I'm glad you have peace.Katyhttps://www.blogger.com/profile/02189007616883663434noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-87156339909837451052009-09-27T18:26:56.595-07:002009-09-27T18:26:56.595-07:00I've said this many times in some way or anoth...I've said this many times in some way or another...the way you right puts us right there where you are and having us see and feel what you do for Trevy. <br /><br />How hard it is to let them just be and fly away on their own, when we so much want to guide them and hold them tight. <br /><br />I think no matter how much you know your baby and understand where they fall on any scale, it feels different when someone else says it to you...its like it takes on a whole new meaning, one that you don't quite want to hear. <br /><br />I'm glad this helped push away or maybe take the place of those second guessing thoughts that have entered your mind about the surgery. I'm sure easier said than done, since I haven't been in your shoes, but you've got his best interest at heart...you always do :) <br /><br />Oh, and yeah we are always wondering how you are doing throughout all of this...this will affect all of you, so remember you guys matter too :)<br /><br />Hugs and Prayers,<br />JodyMJStumphttps://www.blogger.com/profile/05506100079795141155noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-58320551599346303602009-09-26T20:19:59.578-07:002009-09-26T20:19:59.578-07:00Great post and fabulous timing. Definitely an exce...Great post and fabulous timing. Definitely an excellent idea to get that done both as a baseline pre-surgery and to reinforce your confidence about why he so desperately needs the surgery. <br /><br />Maddie was scheduled for a Neuro Psych eval the week after her seizures showed up, because we were beginning to see strange things in her behavior. We canceled and have not yet rescheduled. I have had enough evaluation through EI to last me for awhile. I obviously know my child, but to have it written on paper in black and white.......makes it more heartbreaking. <br /><br />I am so so so glad you got this reassurance as the surgery date draws near. Y'all are always in my thoughts and prayers right now.Lizhttps://www.blogger.com/profile/08781872704576500055noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-4691313434478947842009-09-26T19:02:34.087-07:002009-09-26T19:02:34.087-07:00LOVE your post, as usual...
I can see myself whee...LOVE your post, as usual...<br /><br />I can see myself wheeling Colby into pysch eval after pysch eval over these 24 years...Here in SC, it USED to be every 4 years...That may have changed since he is not longer in school...But I always dreaded it, even though, like you, I already KNEW the outcome...Guess I was just naive enough to think they might see something I didn't....Turns out it was usually the other way around....<br /><br />Maybe one day when I am in a particularly pissy mood, I will post about actually having to fight his school for 8 months (and eventually go to the governor) in order to KEEP MY SON IN A STATE SUPPORTED SCHOOL FOR THE MULTIHANDICAPPED BECAUSE THEY SAID HE SCORED TOO LOW ON HIS PSYCH TO ATTEND!!!!!!<br /><br />Can you guess how I feel about THAT one?<br /><br />Don't EVEN get me started....<br /><br />Bottom line, YOU know your child...YOU know what he CAN do and understand...And you know better than ANYONE what he CAN'T do and CAN'T understand.....<br /><br />I am relieved that you feel the way you do about the results....You can't hang your hat on any of that....<br /><br />Much love,<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-52631053715236532102009-09-26T18:46:51.761-07:002009-09-26T18:46:51.761-07:00Ya know, I totally associate butterflies with Emma...Ya know, I totally associate butterflies with Emma. I've never really been a butterfly person, but since Emma has joined us, butterflies are everywhere in our home.<br /><br />I have the same thoughts about Emma. I live with her. I know what she's like and how she acts. But we we do the testing and they tell me that she's at a 6 month level (with a smattering of skills up to 10 months old), it takes everything I have to not cry. And then afterwards, the tears flow. As they flow now just typing this. There's something so definitive about it that it breaks my heart. We've been at the 6 month level for at least a year now. And it hurts every time. But there's nothing to do about it except what we're already doing. So I accept it...for now.<br /><br />And I HATE it when I forget the stroller. She's so darn heavy.Andihttp://wordpress.theparkside.net/emmasgracenoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-28383179654811464672009-09-26T18:12:53.817-07:002009-09-26T18:12:53.817-07:00That's what the word epiphany was created for....That's what the word epiphany was created for. <br /><br />I'm glad you found peace. We didn't have the evaluation until a month after surgery. We just wanted to baseline where things were at and come up with a new and improved plan. And we knew that she was behind and since the surgery didn't add brain we knew the cards were stacked against her. It was a relief to get factual information about where we were. When my 2 1/4 year old was pronounced to be at a 10 month level I wanted a recount cause I was sure it was more like 12 months. But I was glad to have the information and glad of the recommendations they made to EI. So I get where you are at and I'm glad it helped you make peace with surgery. <br /><br />Try to avoid going near medical offices and hospitals until you absolutely have to. We need to keep all the germs away. We don't need any illnesses to delay the surgery you are at peace with.Sineadnoreply@blogger.com