tag:blogger.com,1999:blog-6588255712079754328.post1387113371690781182..comments2023-09-08T07:55:17.324-04:00Comments on A Wonky Kind of Beautiful: I need to stop typing these up in Word; it’s too easy to go long. But there’s a lot to be said, so settle in.Heatherhttp://www.blogger.com/profile/08482109987411601315noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-6588255712079754328.post-61929954107045514212008-12-10T15:07:00.000-05:002008-12-10T15:07:00.000-05:00Hi Heather I just love your attitude and writing ...Hi Heather I just love your attitude and writing style. My son Drew has TOF and kidney & bowel issues. After Drew's surgery he wouldn't drink and I though he would if they removed the gtube. I just wanted them to let me try. I had to yell in a interns face "You need to listen to the mommies, we know our kids, you just know more about medicine than I do. You do not know more about this child" I wanted his gtube out and they would not remove it, He finally started drinking 10 minutes after it was out. uh huh, one for the mommies!<BR/><BR/>Your kids are lucky to have such a strong mommy! I live in Parkhill, we should try to meet sometime!Heatherhttps://www.blogger.com/profile/15841753858455011917noreply@blogger.comtag:blogger.com,1999:blog-6588255712079754328.post-16062999944158298872008-12-09T11:58:00.000-05:002008-12-09T11:58:00.000-05:00when you shop.... got to H&M in white oaks...a...when you shop.... got to H&M in white oaks...at the back...the kids stuff...its mostly girls stuff... but you should fine cords in every color! :) LOL and shoes and dress shirts and ties... I love it there...<BR/><BR/>as for CCAC.. they do suck-a-roo... try dealing with social workers that don't do "transplant stuff" LOL... ya...not fun...its taken me a month to access they funding because Ruta's caring for her ailing mother... I swear if I just had her address book I could get so much more done :)<BR/><BR/>but this is a comment, not a one upping you... I am curious if you will come sit with us when Yale's heart comes...I think you company would be greatly appreciated... totally not an experience I'm looking forward to and at the same time an experience I'm dying to watch happen...:)<BR/><BR/>anyhoo...I know it depends on the kiddies...and this is still supposed to be a comment...LOL... so... get back to me...via facebook if you will... either way you're going to get a screaming phonecall when his heart comes!<BR/><BR/>hugs to you and your gorgeous babes...<BR/>TannaTannahttps://www.blogger.com/profile/00372320444846191634noreply@blogger.comtag:blogger.com,1999:blog-6588255712079754328.post-38746878202501572802008-12-07T07:51:00.000-05:002008-12-07T07:51:00.000-05:00Okay, so wow, I don't even know where to begin. F...Okay, so wow, I don't even know where to begin. First, have you considered looking on ebay for Elmo? I bet you could score some good stuff there. And if I spot anything I can grab it and mail it to you. What sort of things are you looking for, anything specific? I'll also keep my eyes open for green for you, what size is he? <BR/>And can I just tell you that my jaw hit the floor when that CCAC woman told you "welcome to parenthood?" Oh my goodness! She needs some retraining on how to be sensitive and what life is like with a child who has special needs and a life threatening condition! Good grief! And time managment would let you sleep get things done - BULL! Clearly she doesn't spend a good part of every week at an appointment or making phone calls while trying to care for other children and run a household. Good grief. I am so glad you got angry and that you are gonig to get the same care for Asher and that your doctor is advocating too and I am going to look up my MPP b/c I am so upset about this. Grrrrr.<BR/><BR/>On a happier note, I am so so so thrilled that Mr. Asher is swallowing cheerios and PIZZA with no aspiration!!!! How incredibly awesome is that? Wow, you must be beyond excited to see him join in the family meals and eat!! And actually eat!! Awesome!! I am hoping this leads to really really good things, things like gradual tube feed weaning instead of 24hrs a day!!! <BR/><BR/>(((big hugs to you)))sounds like it's been a heck of a few weeks. You are awesome and so strong and a fabulous momma to 3 beautiful, wonderful kiddos!<BR/><BR/>WenWendyhttps://www.blogger.com/profile/16080352553700502661noreply@blogger.com