tag:blogger.com,1999:blog-7867999989486561891.comments2012-12-06T18:39:08.514-08:00(M & K)²kimishoehttp://www.blogger.com/profile/01733248550214441445noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-7867999989486561891.post-15547720411660508462012-12-06T18:39:08.514-08:002012-12-06T18:39:08.514-08:00I would love your contact info! Email me at kimish...I would love your contact info! Email me at kimishoea at aol dot com or you can find me on Facebook under Kimi Shoe. Bitstream Verahttps://www.blogger.com/profile/11163930526920817584noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-8961019321575623192012-11-27T04:40:42.152-08:002012-11-27T04:40:42.152-08:00Hello. We have a 12 year old daughter who was bor...Hello. We have a 12 year old daughter who was born with Isolated BiLateral Cryptophthamos as well. We have had multiple surgeries, including one with Dr. Goldberger (you link to his site) in California. If you would like to speak further, let me know and I will share my contact information. Our daughter is doing amazingly well. She attends a regular school with an enriched music and drama program. I would love to talk further to hear how Kale is doing and to perhaps share some tips from our experience.Katie's Momhttps://www.blogger.com/profile/11308286224004952601noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-13401018332246272452011-03-22T16:02:45.871-07:002011-03-22T16:02:45.871-07:00Haven't been by in awhile, just came by to see...Haven't been by in awhile, just came by to see if you had any new updates. <br /><br />Hope all is going well and hope you post again soon.sprinkleshttps://www.blogger.com/profile/09081967372702276914noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-40493332730207950702011-01-25T23:12:00.878-08:002011-01-25T23:12:00.878-08:00Ohhh I've been eying those miniature pianos. I...Ohhh I've been eying those miniature pianos. Is it pretty in tune, though? The ones that are way off drive me insane.Monika @ Lovely Bookshelfhttps://www.blogger.com/profile/13138730317208033566noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-26594260571403612382010-06-29T19:11:54.011-07:002010-06-29T19:11:54.011-07:00Your article is beautiful! <3Your article is beautiful! <3Monika @ Lovely Bookshelfhttps://www.blogger.com/profile/13138730317208033566noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-65864671030863178772010-06-29T15:57:23.923-07:002010-06-29T15:57:23.923-07:00I think it's better myself, not to put the lit...I think it's better myself, not to put the little ones through the procedures when they will never have the eyelids to look 'normal' (whatever that means). we've kept goggles, cool ones on Acer, and he rarely gets any funny looks for his eyes, it's more his feeling things that keys people in to his blindness.<br /><br />Do what feels right in your heart!Heather BThttps://www.blogger.com/profile/17417295196847121763noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-73280284992860643362010-04-19T12:03:06.312-07:002010-04-19T12:03:06.312-07:00The children whose head's have caved in tend t...The children whose head's have caved in tend to be the ones who've had cancer, and the chemo and radiation damage the temple bones. Unfortunately, they are the children without eyes that Dr's see the most. I think that most kids with two pros. look more abnormal than if their eyes were simply left closed. If there is one eye, then the pros. are far more natural looking. If you want to see kids without pros. go to bethel china dot org. the foster home our daughter came from. Granted all the kids are Chinese, and Kale is not, but you'll see what it can look like at all different ages.<br />Hope This helps <br />HHeather BThttps://www.blogger.com/profile/17417295196847121763noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-89309774212222531462010-04-07T07:42:00.078-07:002010-04-07T07:42:00.078-07:00We have been struggling with a similar decision fo...We have been struggling with a similar decision for over a year now, and we just decided to move forward with surgery for Stella to get expanders.<br /><br />I like to think that whatever choice we make is the right one, especially if it is well-researched, thought out, and if we are trusting our intuition. All we can do is make the best decision with the information we have, and then move forward with optimism. I don't believe in regrets. If the situation doesn't work out well, choose again in the future. <br /><br />Hang in there, and enjoy watching Kale blossom as a toddler! <br /><br />- Pauline (Stella's mom)Stellahttps://www.blogger.com/profile/02024193559983584188noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-2139488011835524432010-04-06T21:39:16.488-07:002010-04-06T21:39:16.488-07:00KIM, You are a great mom. I just want to add my op...KIM, You are a great mom. I just want to add my opinion, so many things in Anthony's life Doctors have told us have been BS. From he would never talk or read or even live (that was a fun one) And he has proved them all wrong. From my standpoint, Dr's are not all knowing, they are all guessing. Do what you think is best for your baby. He has been through a lot. MD stands for Mommy Doctor to me. Sometimes, we actually do know whats best. Kiss the sweet boy for me! Good luck with your decision.Chellyhttps://www.blogger.com/profile/10907170388799660622noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-79705615578214940252010-03-05T23:46:11.206-08:002010-03-05T23:46:11.206-08:00I realized today that I haven't visited your b...I realized today that I haven't visited your blog in a long time! <br /><br />OMG, Kale sure has grown!!! I hope his surgery went well.sprinkleshttps://www.blogger.com/profile/09081967372702276914noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-91262605946472966722010-02-28T19:37:23.214-08:002010-02-28T19:37:23.214-08:00That is so awesome that Kale is crawling and talki...That is so awesome that Kale is crawling and talking!!! Maile will grow up to be so much more caring and understanding. I know it sounds like something everyone says but Kekoa is the same way. He always takes care of Oliana and will say that he will always take care of her. He's only 4. I knew from Koa's first interaction with Oli that he was given to me to help her and help me. And he has done so much in his short life to ease my heart and make everyday life better. Our kids are very lucky to have such amazing siblings!Shannonhttps://www.blogger.com/profile/13791473462660555783noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-56183090859127806812010-02-22T09:39:41.480-08:002010-02-22T09:39:41.480-08:00Praying for Kale's surgery (and for you guys t...Praying for Kale's surgery (and for you guys too!) (((hugs)))<br /><br />I loooooooooove that pic of Maile sitting on the sofa, she really looks just like you!Monika @ Lovely Bookshelfhttps://www.blogger.com/profile/13138730317208033566noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-90631927321345411962010-02-22T04:41:51.460-08:002010-02-22T04:41:51.460-08:00I LOVE his teethy grin :) It makes my heart happy...I LOVE his teethy grin :) It makes my heart happy to see babies so happy like that --- when I walk around with a teethy grin people just laugh AT me not with me :)<br /><br />Maile is such a big girl and such a GREAT big sister - of course because she has the BEST teacher on how to be a great girl :) <br /><br />Keep on truckin guys - you are an amazing family full of love and compassion..... thats what you need in life more than anything else :)Just your everyday average married momma...https://www.blogger.com/profile/13864197335836275472noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-43611276693002073962010-01-30T18:01:01.093-08:002010-01-30T18:01:01.093-08:00Oh what a great idea for Maile's 6th birthday ...Oh what a great idea for Maile's 6th birthday party! I'm sure she'll look back and remember it for sure. You're a great mama and you both are so blessed to have each other!<br /><br />I'm so glad that you had a great meeting with Kale's OT. Everything is looking positive!Lindahttps://www.blogger.com/profile/06102362663976429651noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-124206846944482572010-01-30T15:51:07.316-08:002010-01-30T15:51:07.316-08:00Maile's birthday party sounds like so much fun...Maile's birthday party sounds like so much fun! Can I come? LOL I never had a birthday party when I was her age. I hope she has a wonderful time!<br /><br />I hope Kale's Occupational Therapist is able to help with all the things she says she can.sprinkleshttps://www.blogger.com/profile/09081967372702276914noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-19324486145178681492010-01-28T08:17:56.171-08:002010-01-28T08:17:56.171-08:00Hi dear,
I completely understand your frustration...Hi dear,<br /><br />I completely understand your frustration. Stella is 18 months old now, and while she hasn't had any surgeries, she is quite delayed. She has BA and some abnormalities in her brain. She's not crawling or walking yet (she is starting to pull up on furniture), and she doesn't talk at all, just babbling. I feel like I am doing everything I can, and still the progress is so slow. <br /><br />I think each of these kids is different, and there just aren't that many of them, so it's hard for even experts to give us good advice. I find that incredibly frustrating. We haven't had any surgery done yet primarily because we have gotten so many conflicting opinions. I don't know what to do, but I don't want her to look horrible as she grows. I also can relate to what you are saying about not wanting to put our kiddos through unnecessary surgery. <br /><br />I try to remind myself that there is no point in looking back and second guessing myself. All I can do is my best in each moment, and try to remain optimistic about the future. And we all have bad days. I allow myself to cry when I'm sad, beat pillows when I'm angry, and remember to enjoy all the laughs and snuggles and smiles. Some days I go as far as to be grateful that Stella is developing so slowly, because I get my "baby" for that much longer - kids just grow up so fast!<br /><br />Hang in there, and know you are not alone. This is quite a journey we are on!<br /><br />- PaulineStellahttps://www.blogger.com/profile/02024193559983584188noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-58797436138673627382010-01-27T21:20:58.231-08:002010-01-27T21:20:58.231-08:00Yay Maile!!! And no, you're not crazy. Have I ...Yay Maile!!! And no, you're not crazy. Have I ever told you anything about my childhood? I was in Maile's position... older sibling to a younger one that needed lots of time and attention (my sis had cancer, diagnosed at age 2). Anyhow, won't get into it here in case I've already said all this -- but I seriously doubt she'll look back with resentment! I definitely don't, and there were lots of times when I had to stay at friends' houses because my dad was out to sea and my mom had to be at the hospital with my sis. I remember really caring about my sister. I DON'T remember feeling bad about what she needed. (((hugs)))<br /><br />Glad Kale had a good visit with the OT. :) Yay!Monika @ Lovely Bookshelfhttps://www.blogger.com/profile/13138730317208033566noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-87387653121036203992010-01-27T20:29:50.853-08:002010-01-27T20:29:50.853-08:00Ugh. Okay, I need to apologize. I wasn't inten...Ugh. Okay, I need to apologize. I wasn't intending for this to be some woe-is-me pity party. <br />I'm blaming PMS.<br />Life isn't bad--things are just frustrating at times. And confusing. And hard. And I know that things could be so much worse. <br />So, I'm sorry.kimishoehttps://www.blogger.com/profile/01733248550214441445noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-60257435447691773752010-01-27T17:46:55.579-08:002010-01-27T17:46:55.579-08:00Oh Kimi, I have no advice for you. I wish I had a ...Oh Kimi, I have no advice for you. I wish I had a magic wand to make it all better for you and Kale. Know that even when you feel like you're all alone, you're not. You have many friends, including myself, who are there for you...if not in person then in spirit. You and Kale are always in my thoughts and prayers.Lindahttps://www.blogger.com/profile/06102362663976429651noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-24093065313430113792010-01-27T15:10:03.935-08:002010-01-27T15:10:03.935-08:00Kimi, I do not even know how to put into words the...Kimi, I do not even know how to put into words the respect I have for you as a person and a mother. I cannot even begin to imagine what you are going through and yet you are always the most chipper faced, sweet, happy person. Kale is so lucky to have you for his mom. LOVE YA!Traci Parkerhttps://www.blogger.com/profile/13972917453431364924noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-46512800088259769062010-01-26T22:11:02.009-08:002010-01-26T22:11:02.009-08:00(((((((((Kim))))))))) I wish I had advice, or anyt...(((((((((Kim))))))))) I wish I had advice, or anything to say that would help, but I know that without being in your shoes there's no way I can. Just know I'm thinking about ya a lot!Monika @ Lovely Bookshelfhttps://www.blogger.com/profile/13138730317208033566noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-14157927739339683672010-01-24T10:34:50.951-08:002010-01-24T10:34:50.951-08:00Isolated Complete Bilateral Cryptophthalmos (with ...Isolated Complete Bilateral Cryptophthalmos (with Microphthalmia) - Say that 10 times really fast. :) <br /><br />I'm in awe of you. Really I am. Instead of just waiting by the sidelines, you actually go out and research stuff yourself. But that's what you do, because that's the type of person you are and that's what Kale deserves. I wish you and your family all the best!Lindahttps://www.blogger.com/profile/06102362663976429651noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-12694836770343455142010-01-22T19:21:08.810-08:002010-01-22T19:21:08.810-08:00Yep! He's always had the microphthalmia--but i...Yep! He's always had the microphthalmia--but it's due to the cryptophthalmos. Crazy, huh? His isn't as severe as some pictures I've seen online--but before he ever had surgery you could tell that his eyelids were never fully formed. There was more fused skin than anything.<br /><br />We've been dealing with an ocular plastic surgeon this whole time rather than an actual ophthalmologist. When he was born he was seen by some ancient old-school pediatric ophthalmologist locally who didn't know what he was doing. Then he was seen by another ophthalmologist at UAB (where we go now). And since there's really nothing for him to do right now at this point, he referred us to the surgeon who's been treating Kale.kimishoehttps://www.blogger.com/profile/01733248550214441445noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-56573713946203550212010-01-22T17:43:53.045-08:002010-01-22T17:43:53.045-08:00In your very first post, you said he had Bilateral...In your very first post, you said he had Bilateral Microphthalmia. Is the official diagnosis now Isolated Complete Bilateral Cryptophthalmos (with Microphthalmia)?sprinkleshttps://www.blogger.com/profile/09081967372702276914noreply@blogger.comtag:blogger.com,1999:blog-7867999989486561891.post-56817171065746378822010-01-17T08:50:07.279-08:002010-01-17T08:50:07.279-08:00I just want to give Kale a big hug! Poor baby has ...I just want to give Kale a big hug! Poor baby has been through so much. But you know what? This just makes him stronger. Ya'll are such a great family. I wish only the best for ya'll. Hugs!Lindahttps://www.blogger.com/profile/06102362663976429651noreply@blogger.com