DrKerry Posted October 23, 2013 Share Posted October 23, 2013 (edited) If you will, show your support by wearing green today. Our daughter has a rare syndrome called "Kabuki Syndrome", it hits 1 out of 39,000 kids in the world and is a genetic syndrome and causes a ton of medical, learning and functioning issues. Our little girl was born at 1lb 12 ounces and measured at 12 inches long. Today she is 7 and doing better and is learning to talk and learning to eat by mouth. She had a cleft pallette at birth and has low muscle tone so it's been difficult to learn how to talk let alone eat and swallow. Looking at her you wouldn't know, she is a bubbly, happy young lady and loves life. She is smart and loves everyone. We call her our little "Rock Star" because everyone that meets her, falls in love with her!!! If you show support today, Thank YOU and God Bless!!! Kerry, Lisa and Lilly Edited November 13, 2013 by DrKerry Quote Link to comment Share on other sites More sharing options...
JM485 Posted October 23, 2013 Share Posted October 23, 2013 It just so happens that I'm wearing green today! Awesome story, sounds like you guess are making the best out of a tough situation. Quote Link to comment Share on other sites More sharing options...
Eshaver Posted October 23, 2013 Share Posted October 23, 2013 I have a Green Oldsmobile , does that count ? Quote Link to comment Share on other sites More sharing options...
Danno Posted October 23, 2013 Share Posted October 23, 2013 Wow. Great little lady! She's got courage beyond her years, and she's indeed fortunate to have such great parents. God bless your family every day. I'm going to go change into something green . . . Quote Link to comment Share on other sites More sharing options...
MAGNUM4342 Posted October 23, 2013 Share Posted October 23, 2013 God bless you all. She's an adorable young lady. I personally never wear green because I don't like the color, but I am making an exception today. Keep being who you are, you and your wife, as it's obviously a big part of what makes her so happy. Quote Link to comment Share on other sites More sharing options...
JollySipper Posted October 23, 2013 Share Posted October 23, 2013 Hey, Kerry, where can I get one of those T-Shirts? Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 It just so happens that I'm wearing green today! Awesome story, sounds like you guess are making the best out of a tough situation. Thank you and yes we are making the best of it. This little lady is MY HERO. I have a Green Oldsmobile , does that count ? Hey Ed, today I'll let it count!!!! Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 Wow. Great little lady! She's got courage beyond her years, and she's indeed fortunate to have such great parents. God bless your family every day. I'm going to go change into something green . . . Thank you Danno God bless you all. She's an adorable young lady. I personally never wear green because I don't like the color, but I am making an exception today. Keep being who you are, you and your wife, as it's obviously a big part of what makes her so happy. Thanks for making the exception today!!! Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 Hey TJ, pm sent.... Quote Link to comment Share on other sites More sharing options...
Bigjeff Posted October 23, 2013 Share Posted October 23, 2013 She looks healthy and HAPPY!!!! I have an autistic son and someone once told me that god gave special kids to special parents!!! Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 She looks healthy and HAPPY!!!! I have an autistic son and someone once told me that god gave special kids to special parents!!! Amen Jeff, that he did and does!!!! Best of luck with your son, I know with Kabuki there are autistic traits wihin Lilly's syndrome. It shows when she stims when she gets home or is idle. I never thought I'd learn so much medical stuff, some days I think my wife and I are real doctors. Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 This is my little peanut at 1 week old.. My Peanut with my wedding band on her arm... Quote Link to comment Share on other sites More sharing options...
Ace-Garageguy Posted October 23, 2013 Share Posted October 23, 2013 What a beautiful little girl. It's a lot for her to deal with, but it seems she got the strong and loving parents she needs. My sincere best wishes for her, and your, futures. Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 Thank you Bill. She has some proud parents and grand parents, that's for sure!!! Quote Link to comment Share on other sites More sharing options...
Tom Geiger Posted October 23, 2013 Share Posted October 23, 2013 Kerry, the very best to Lily and your family. I didn't leave the house today, but I'll put one of my NNL East lime green staff shirts on tomorrow! Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 23, 2013 Author Share Posted October 23, 2013 Sounds good Tom, thanks a ton!!! LOL Quote Link to comment Share on other sites More sharing options...
PappyD340 Posted October 23, 2013 Share Posted October 23, 2013 What a precious child, my granddaughter that lives with me, her name is Lilly, your Lilly obviously has some great parents that love her very much, hang in there Kerry, you and your wife have an awesome purpose in life!! Quote Link to comment Share on other sites More sharing options...
slusher Posted October 24, 2013 Share Posted October 24, 2013 Great story Kerry, l have never known about that but thanks for telling me. Lily and you wife looks so happy. God will continue to bless you. Again thank you for such a great story.... Quote Link to comment Share on other sites More sharing options...
Modelbuilder Mark Posted October 24, 2013 Share Posted October 24, 2013 Thanks so much for sharing the information. Great to hear that she is doing so well now. As it turns out, I somehow managed to be in a green shirt today as well! Odd. I just read this, so you must have sent a msg via telepathy ealier this morning. Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 24, 2013 Author Share Posted October 24, 2013 What a precious child, my granddaughter that lives with me, her name is Lilly, your Lilly obviously has some great parents that love her very much, hang in there Kerry, you and your wife have an awesome purpose in life!! Nice little Kwinkie Dink, both girls named Lilly, lol. Kids are awesome, especially happy and healthy kids. Lilly's syndrome will be a life long challenge but it's also oh so rewarding. Seeing her grow up and become the person she is becoming, I wouldn't change it for the world. People have asked me if we had a chance to do it over, would we change anything. I said Nope, it's made our daughter who she is and it's made mom and dad who we are!!! It's kind of a funny thing but when something this big happens in a persons life, it defines who we are!!!!! Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 24, 2013 Author Share Posted October 24, 2013 Great story Kerry, l have never known about that but thanks for telling me. Lily and you wife looks so happy. God will continue to bless you. Again thank you for such a great story.... I haven't really Talked about Lilly's syndrome on this board. A lot of my close personal friends on my other board know of her because they see her from time to time. I just felt today was a good day to share my little Lilly!!! Thanks so much for sharing the information. Great to hear that she is doing so well now. As it turns out, I somehow managed to be in a green shirt today as well! Odd. I just read this, so you must have sent a msg via telepathy ealier this morning. Hmmmmm, hmmmmmm, hmmmmmm, I'm sending more messages for later.... LMBO. Thanks MArk!!! Quote Link to comment Share on other sites More sharing options...
Badluck 13 Posted October 25, 2013 Share Posted October 25, 2013 Hey Kerry I know I'm a lil' late on this one but I wanted to share with you what my Baby Girl made for me to wear for your Lil' Angel.... Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 25, 2013 Author Share Posted October 25, 2013 Well Mike, tell your "Baby Girl" thank you from my "Baby Girl"!!!!! It's never too late!!! Thank you!!!!! Quote Link to comment Share on other sites More sharing options...
charlie8575 Posted October 26, 2013 Share Posted October 26, 2013 Keep the fight in you, that's the best way to survive this, or any other challenge. She certainly looks like a happy kid, and two good parents in a stable house make a whole universe of difference. Do the best you can- it's all anyone asks of you, and all you should ever ask of yourself. If she still needs some attention for her cleft pallette, or any other pediatric dental issues, M.V.O.P.E.R., known commonly as "Grotto," a Masonic-affiliated body, offers assistance for families with children who have dental and oral deformities. I know they'll be happy to help you if you need it. http://www.hfgrotto.org/ I'm not in Grotto- I belong only to a Craft Lodge, OES and Royal Arch, as well as the Tall Cedars (which helps sponsor MDA), but I know this is a great program that might be of help for you. I didn't wear anything green Wednesday- didn't see this until now, but I'll try to make up for it this weekend. Charlie Larkin Quote Link to comment Share on other sites More sharing options...
DrKerry Posted October 26, 2013 Author Share Posted October 26, 2013 One thing that some kids don't get these days is a stable home. My daughter has no worries there. We have a ton of fun around here.. Thank you Charlie for the info. Grotto may be similar to what she is already getting. Lilly is a Shriners girl. Shriners Hospital for Children of Chicago helps kids with dental, cranial and spinal issues. She has had two surgeries so far, one to close the pallette and one to do a Pharengynial Flap Repair to allow her to talk (Pronounciate words) and eat by mouth. Up until two years ago she has been 100% tube fed and is now eating two meals (Pured foods) by mouth. She is improving but it takes awhile with her low muscle tone. I do appreciate the info and time you took to tell us. Thanks a ton!!! Thanks for the wearing of the green. LOL Quote Link to comment Share on other sites More sharing options...
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