CommentsHey Skyler! We keep checking in on your site~ but not seeing anything! Tell your Mommy to let us know when it is done. We love and miss you tons!!
CommentsHi Skyler! We were checking to see if there was anything new on your website...tell your mommy we want to see lots of pics! Hugs from Kalair to you, Sky, and to Luke and Casey too!
CommentsHi Sweety girl! FEEL BETTER RIGHT NOW! Thanks for my present. I love my little Skyler bear. I slept with it last night! Love and get well huggles, MJ
CommentsHey Sky! We were just checking to see what was new with your site. Your pictures are so cute!! cant wait to see you. (((HUGS)))
CommentsHi Skyler: I'm glad to hear you are doing better. It is no fun being sick, that is for sure. Can't wait to see new pictures of you! I bet you have grown and are so so beautiful now!!! Big hugs to you from me and Wyatt. Love ya, MJ www.our-sma-angels.com/Margaret
CommentsHi Skyler: How was your day? Hope you it was great! Keep smileing and know Wyatt and I love you! Huggles and Kissems, MJ www.caringbridge.org/ny/mjpurk
CommentsHi McAdam's family, GREAT website! I love everything, especially the pictures! Thanks again for my presents! Love. MJ
CommentsDear Kim, Thanks for sharing Skyler's site with us. She is just adorable. We hold your entire family in our thoughts. Sky, be good and we sure hope you stay healthy! Laurie & Mark Potter & our angel, Marshall
CommentsHi to all of the McAdams! I just wanted to say how much I like Skyler's new web page. And I wanted to tell Luke and Casey that I like their parts the very best. You two are wonderful poets and an even better big brother and sister! Skyler did a wonderful job of picking her family. Much love, Sallie (Kalair's Grandma)
CommentsYay, the Bingaling has an awesome website! Kim and Jeff, thanks for sharing your beautiful girl with the world, and Kim, thanks for being a fantastic friend! Luke and Casey, you guys are awesome, and your pages are great! Skyler Bingaling, WE LOVE YOU!!! You are an amazing little fighter and an inspiration! To all the McAdams...consider yourselves (((HUGGED))) by Kalair and me!
CommentsHi Skyler: Your website looks better everyday. HAPPY SPRING!!! How is your weather? It's been so nice here and Wyatt gets to go for a walk almost everyday. Hope you can go outside soon and enjoy the warm weather! Have an awesome day! Love, MJ - www.caringbridge.org/ny/mjpurk
Commentshi family, the web sight looks great. I see you now have blues clues. Sarah thinks its great too. Keep up the good work.
CommentsKim, Jeff, Luke, Casey and Sky!! The site look great!! Great job. You are such an amazing family and we are so proud you let us be part of it. Sky sends all of you (((hugs))) and cant wait to see you in May!
CommentsHello Skyler & Family, What a beautiful little girl you are! I just wanted to sign your guestbook and tell you what a great website you have. Tell Mommy to visit us at http://www.quiltsoflove.com if she would like us to make you a virtual online Quilt personalized just for you! We'd be honored to make you one. Mommy can come visit & see others we've made. It's all done by volunteers who would love to help make you smile. God Bless you and your family. ~Hugs~ Jean
CommentsGreat job Kim!!!! I love the picture, the story (brief....LOL)..I just LOVE the website! I am so blessed to count you as one my "best" friends while we have never met! GREAT job on the website and I look forward to seeing LOTS more pictures because you have a very nice looking bunch of kiddo's!!!! Lily sends hugs to her buddy Sky!!!
CommentsHey there! Hope you had a great week! I'm doing alright. I'm so happy Spring has 'sprung'. Unfortunately, it's been kinda chilly here, so Wyatt and I haven't been on many walks. But that's ok because, Wyatt enjoys digging in the back yard. He digs and digs to find his favorite toy...ROCKS! If you want to, you can e-mail Wyatt and he'll write you back. He LOVES e-mail so much! His e-mail address is NewBrnCar4wyatt@aol.com . Please feel free to e-mail him anytime! Have a great week and remember, Wyatt loves you and so do I! Love, MJ - http://www.picturetrail.com/gallery/view?username=bshanson68
CommentsHi Aunt Kim, Uncle Jeff, Luke, Casey, and Sky! Miss you all very much and hope everything is going well! I really liked your website Skyler, Blue's clues is a good choice. I pray for the warm weather to appear, but that seems like it will never happen lol. Hope to see you soon! XOXO!
Commentswhat a beautiful family and great website. my favorite part is luke's and casey's interview. i think that it is perfect! my baby jacob died six months ago, he was nine months old. sma is such a horrible disease, but jacob gave us (and continues to give us) so many gifts. skyler is so beautiful with the biggest eyes! give her a kiss from us and from jacob! www.ourshootingstar.com
CommentsHey there Skyler, Just wanted to get an early happy birthday to you in before I head off to bed. I hope you have an awesome birthday weekend. You rock! Hugs to you and your family. Cant wait to meet you. Taylor's best bud, Peg Bailey
CommentsHAPPY BIRTHDAY TO YOU..HAPPY BIRTHDAY TO YOU.. HAPPY BIRTHDAY DEAR SKYLER..HAPPY BIRTHDAY TO YOU.. Happy 2nd birthday Skylar! We are so proud of you..and your family too ;o). I can't believe you are 2 already!!! HOORAY for you! We love you tons and we are SOOO happy that we are part of your life. We can't wait to see you in a few weeks. Loves of hugs and kisses..and have a GREAT day.
CommentsHAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR SKYLER, HAPPY BIRTHDAY TO YOU, AND MANY MORE!!!!!! I can't believe the Bingaling is 2, hip hip hooray for you! I hope you're having a great day and being very spoiled. I tried to call you twice, but you must have been partying hard. Tell your mommy and daddy and Luke and Casey to give you big hugs and kisses from me and my mommy. We love you and we are SO proud of you!! Happy birthday big girl and welcome to the club!! Love, Kalair (and Aunt Liz too!)
CommentsHappy Birthday Skyler! I hope you have been having a super wonderful Birthday you big girl!!! I wish you many happy days and lots of laughs! kisses to you! laura-marie down in NJ
CommentsWell you certainly have a beautiful Daughter. I am amazed at how well she is doing, My G-daughter Saria Clark was born 6/25/01 diagnosed with SMA I in Feb 2002 and from then on it was crazy! Saria was the first in our are in Oklahoma that we knew of with SMA so we learned quite a bit from Liz, Tracy and Monica English. We choose not to do a feeding tube as Saria loved hawiian punch and we did not want to take that from her. We spent quite a few times in the hospital, but 12/2/02 was Saria's last visit to our Woodward Hospital when she earned her angel wings. She is missed and loved very much. We are learning so much more about SMA even though she is gone and someday if there is another family in "our neck of the woods" hopefully our Family can help them. Please visit her web page on SMA angels. Take care of that precious little girl and give her Hugs and Kisses from Saria's Family in Woodward, Oklahoma
CommentsWell you certainly have a beautiful Daughter. I am amazed at how well she is doing, My G-daughter Saria Clark was born 6/25/01 diagnosed with SMA I in Feb 2002 and from then on it was crazy! Saria was the first in our are in Oklahoma that we knew of with SMA so we learned quite a bit from Liz, Tracy and Monica English. We choose not to do a feeding tube as Saria loved hawiian punch and we did not want to take that from her. We spent quite a few times in the hospital, but 12/2/02 was Saria's last visit to our Woodward Hospital when she earned her angel wings. She is missed and loved very much. We are learning so much more about SMA even though she is gone and someday if there is another family in "our neck of the woods" hopefully our Family can help them. Please visit her web page on SMA angels. Take care of that precious little girl and give her Hugs and Kisses from Saria's Family in Woodward, Oklahoma
Commentswe really like your web site Skylar I love blue's clues. please visit my site makalia
CommentsHey Skyler, Happy belated birthday, wow I just love your website, Blues Clues is also one of my favorites. My mommy is helping me type this but I wanted to say hello to you and your sister and brother. I loved looking at all of your pictures. Wow blue birthday cake ummmmm I love tasting cake and ice cream too, well I really love all food I always tell my mommy "want more" and she usually gives me more. Well it is my nap time so I will talk to you later. Hugs to you, Love Samantha (SMA Type 1 - 3 years 3 months old) PS - Mommy sends hugs your way too.
CommentsHope you had a great birthday. The pictures are great!! You have really grown since I saw you last. Happy 2 years old!!! LOVE YA
CommentsJeff, Kim, Skyler, Luke and Casey, Thanks for sharing your web page with me. Jeff, if you recall, I have a very close friend who lost her son to SMA about 8 years ago. I hope that years and awareness are helping with the focus, and cure for SMA. Luke and Casey I love your own Web Pages and I really enjoy your poems. I look forward to new pictures and stories as I will visit your web page often. Kim..... from what Jeff tells me.... you are a rock. I think of you often ~ ange
CommentsGreetings to the McAdams family. Thank you for sharing your website with us, she is beautiful. We are so glad to hear Skyler is better. Her zest for for life is in no doubt because of her wonderful family. Our daughter Amanda is a big fan of Blues Clues too (don't tell anyone but so am I). Stay strong Skyler. Love the Simpson family
CommentsThis is a beautiful site.Thank you for sharing it with me. My prayers and love are with all of you daily. Love Trudy
Commentsok- I've haven't signed your guestbook yet - so here goes! I just want to say the best page of all is "Daddy's"...brought tears to my eyes Jeff - you guys are sure one increadible family, I hate SMA but I'm sure glad it's brought me to you and I love you all! Karen
CommentsHey Bing!!! Cant wait to see you this week. Hopefully you and Sky could "telapathically" (ok I cant spell) tell each other to knock it off and feel better. Sky is actually doing better now and off pap with O2 of 99% and heart rate of 123!!! So maybe she just needed the nap. So now you feel better OK? See you soon. Love you tons, Aunt Tracy and Skylar Elizabeth
CommentsHello friend! Hope you are doing well and having a great week. I've had a great week! The weather has been very nice here and Wyatt and I have really enjoyed it! What have you been up to? I hope you are feeling well and having a great day! Love your buddy, MJ - http://caringbridge.org/ny/mjpurk/
CommentsMom and I just visited your site and you look great! I hear you are not feeling well and I hope you get better real soon. Your G-tube Buddy Timmy
CommentsI HAD to check out all the new pics on the site!!! She looks so CUTE Kim! I love the "nakey" pic's too (Lily LOVES to be nakey too :)). I have had such a GREAT time talking to you this past week and hope to visit you guys sometime SOON! Lily and the "bingaling" would look so CUTE together!!!! Hugs to you guys and GET WELL SOON Sky!!!!
CommentsHey buddy! How have you been? Hopefully great! If not, feel better right away, okay? I have to go to hospital again soon. :-( So, if you don't hear from me, don't worry, I'll be back really soon!!!! Remember I love you and stay well! Huggles (haha a new word) MJ - www.caringbridge.com/ny/mjpurk
CommentsHi there! How are ya? Hopefully you are feeling GREAT today! Wyatt says he hopes you are having good weather! Stay strong and well! Can't wait to see all of you again. Until DC, Love your buddy, MJ - http://www.our-sma-angels.com/Margaret/ www.caringbridge.org/ny/mjpurk NY Hugs and Hope www.hugsandhope.com
CommentsHey sweetie!! Boy you are getting soo big. I finally got around to look at your site. Very very nice. I look forward to coming back and seeing how you are doing. Aschdon and the girls send you hugs!
CommentsHey SKY: It was great getting to see you and Luke and Casey again. You are getting so tall and beautiful. I will talk to you after my hospital stay. TTYL. Love MJ http://www.our-sma-angels.com/Margaret/ http://www.caringbridge.org/ny/mjpurk http://www.hugsandhope.com (Dec. 2001)
CommentsYour website is absolutely beautiful. Brett & I loved to look at it. I love the way you added in the kids take on SMA- It makes it so unique!
CommentsKim -- Great website! I especially like the kids' view. I'll talk to you soon! -Betsy
CommentsI love the website. My favorite part is the "kids view" page. Thanks for sharing those important points of view with us!
CommentsKeep on figthing and laughing!!!!! My nephew has SMA2 and last month we celebrated his 12th birthday!!!
CommentsYou have a wonderful family and an inspirational website. God Bless you and I am glad Dr. John Bach's protocol is working and she had the opportunity. We were not given that chance, but I love my Ta'Bria just the same. Feel free to visit her at her webby. She is type 1 and will be 9 in November. God Bless you all! Celia & Ta'Bria www.tabriaswebspiration.homestead.com//
CommentsWell well I guess God has put a blessing in your lives. Jeff, I can only remember you when we were growing up on Wedgewood dr.I wish I kept in touch throughout the years.I wish I did come to the house when I was in town.Skyler is beautiful, she looks like you and your dad.Please say "HI" to her and tell her who I am.I pray often nowadays and I will add the family at 74 Wedgewood dr.God Bless.
CommentsHi Kim, Just wanted to say hi. Give all the kids a hug for me. Hope all is well. Hugs Peg p.s. Love the website
CommentsYour website is beautiful. I viewed it because of the reference to a G-Tube. My son has Niemann-Pick Type C which is a very rare fatal genetic disease. God Bless you and your family. Lucy Liegghio
CommentsSky, We love your website. It is the first time we have been on it. We love the Blues Clues and the pictures. We think about you and your family often. Hugs, Beth, Emma and Nicholas
CommentsHi Skyler: How are you doing? Tell you mom and dad hi. Don't forget to tell Luke and Casey hi too!!!!!! Sorry I haven't visited you in awhile. I was on vacation and I finally got my computer back (they had to fix it). I am back in school and working hard...I was home most of the week cuz I was sick. Hope you are doing ok. TTYL Love, MJ www.caringbridge.org/ny/mjpurk
Commentsyou bubble larry
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CommentsHello, How are you today? How is your weekend going? I am home sick and Wyatt is keeping me company, snuggling in bed with me. If you check out my caringbridge website, you can see a picture of Wyatt and I snuggling in bed. Have a good day. Love, MJ www.caringbridge.org/ny/mjpurk http://www.our-sma-angels.com/Margaret/
CommentsHi Skyler and family. I just love your website. I have been looking at it all and taking it all in. Great job kim! I just love the Blues Clues and can not wait to show Hannah your site in the a.m. Hope you are staying healthy. Say hello to your big brother and sister from all of us. HUGS and KISSES
CommentsHey! How are you doing? I'm still sick, UGH! Wyatt is very cuddly lately and loves to snuggle with me. I wish Wyatt could come and snuggle with you right now! Hope you are having a great day! Love MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/
CommentsHi Skylerbing! We were just enjoying your website and all your pretty pictures. Tell your mommy we want more new pictures of YOU! Give your family lots of kisses and smiles, and tell them to give you hugs and smooches from us! Love you, Kalair, Liz and Sallie
CommentsHi! How've you been? I'm finally am feeling better! I started some new medicines that really help! Wyatt is really sad today. My dad vacuumed the couch so Wyatt can't sit or lay on it. Oh well, guess he'll just have to snuggle with me! Hope you are doing and feeling GREAT! Love and hugs, MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/ Hey Skyler; I need a new picture to print out of you for my book and clock...hint hint to mommy. Tell your brother hi and you sister too. I loved spending time with you in June!
Commentshi kim and all her sweeties! I wanted to see if you had any new photo's up of sweet skyler. i just love what you have done for this site. hopefully one of these days we help karen and bill get one going for connor and his big brothers. i hope you all are having a happy and healthy fall.
CommentsHi! How are you? I still have a cold...:( Wyatt has been very good and cuddly! He actually has a new website! If you want check it out go to, www.freeweb.com/mj88 . He'll have a guest book soon so check back and let him know you have visited! Hugs to you, MJ & Wyatt www.caringbridge.org/ny/mjpurk www.our-sma-angels.com/Margaret PS. Thanks for the card. I got it today...I love your hand tracing and all the stickers on the back!!!! THanks, my little buddy!!!!!!
CommentsHi there! We hope you have a GREAT Halloween! What are you going to be? Skylar is going to be Nalah from the Lion King. She loves that movie. Be safe and have fun. (((hugs))) from Pa
CommentsHi! How are you? How was your Halloween? Mine was pretty boring. We didn't have many trick-or-treaters here. Wyatt didn't enjoy Halloween very much...He barked and barked at everybody who came. Wyatt says I ruv yoou...That means I love you...I hope your doing well! Hugs, MJ & Wyatt http://www.caringbridge.com/ny/mjpurk
CommentsHello to Skyler and her family. It's wonderful to see positive SMA stories and happy children. My cousins baby was recently diagnosed with SMA type I and the family are working towards Abbie having a long happy life. http://www.abbiepennington.co.uk Best wishes to you all XX
CommentsHey Aunt Kim, Uncle Jeff, Luke, Casey, and Sky! I hope you are all doing well at home and in school! I just wanted to say hello and to see how you were all doing! I know I hardly get to see any of you since I'm at school, but I love you all and miss you! Happy Thansgiving!!! Cousin Erin
CommentsHi Skyler! Mom was showing me all your pictures and your cute website and I wanted to sign your guestbook and tell you how much I like it. I am sending you (((((HUGS))))) and kisses and hope that we can get together again one day soon! Miss you!
CommentsHi there! Hope you had a great Christmas. I sure did. Santa even came and visited me and Mommy! Remember to ~~pray for the cure in 2004~~!! Big (((hugs))) www.our-sma-angels.com/Skylar
CommentsHi there! Hope you had a great Christmas. I sure did. Santa even came and visited me and Mommy! Remember to ~~pray for the cure in 2004~~!! Big (((hugs))) www.our-sma-angels.com/Skylar
CommentsHi! Happy Leap year!! Its hard to believe its almost March. I've still been home sick, no school for me. :( I have been doing homework but not much (shame on me). Wyatt sends you big slobbery dog kisses from NY. Hope you're doing well! Love, MJ http://www.our-sma-angels.com/Margaret/ http://www.caringbridge.com/ny/mjpurk/ MJ "Just living isn't enough," said the butterfly, "One must have freedom, sunshine and a little flower." -Hans Christian Anderson
CommentsI just read your site and what a beautiful sute it is! Very colorful! I was wondering if there was any yeast or candida detected in skylar's lungs before the lung collaspeor after. Upon research, I found that yeast can grow in the lungs also. Learn something new everyday! You stated that Skylar was a very strong baby who later Dx. at 7 weeks as a floopy SMA1. Hoe true it is how all SMA babies are different. Daniel hardy move when I was pregnant with him. He was born floppy and had a cat cry. He rarely cried, moved, but was very alert. Milk formula made him constantly vomit. Milk formula had the same effect on my daughter was was very colicy and screamed a lot. my son started getting stronger after taken him off milk formula and putting him on isomil which I believe is a rice formula. He did real well on it. When he was on milk after getting off formula, he always looked sick with dark circles under his eyes and was getting weaker. As he grew milk seemed to cause diarrhea with him, but tell a kid he couldn't have icecream. Icecream caused him to reflux. He would eat it when we went to golden corale resturant and he would reflux it up. Looking at your daughter's pictures reminded me of how small DAniel was. He looked like a walking skeleton. He looked like his body was starving and he wasn't getting the nutrition he needed. Very small, easy to knock over, I'd remember the time a child bumped into him at daycare which left an egg knot and scratches over his eye. I'd go to the store and people would look at me as if I wasn't feeding him and as if I caused his egg knot. I took him out of daycare and put him into a daycare for handicapped children and had the same problem. When Daniel stopped walking at 6 , he would crawl or roll to where he needed to go around the house. We finally was able to get a wheelchair. As far as yeast, he seemed to always have a white build up on his tongue and bad breath. Cleaning his mouth didn't help as it would appear again the next day and no doctor ever told me what it was or gave him anything for it or told me how to prevent it. Today, as long as he doesn't have a lot of milk products, he rarely hets thrush, however I have noticed his skin cells seems to die at a fast rate or something. I bath him and gobs of skin flacks off or white skin between his toes. The very next day, same problem. Now we are seeing this on his scalp. He also develops dark skin patches the drematology says is ancanthosis nigracans often seen with insulin problems, but his insulin came back fine. Sometimes he has a yellow color to his skin like you would see with jaundice. About FLAXSEED: I tryed that with daniel also. He got worse and he was born with a flat tan birthmark on his ankle. Just one week of flax seed, he developed dark dots of pigment within that flat dark birthmark-flatmole what ever it is. Dermatology cut it out for testing because it looked pre-cancerous. It turned out to be nothing serious. He had had it all his life since birth and at age 14, taking Flaxseed had changed it's appearance. Flaxseed is a fatty acid. When Daniel was 9 we went to see a urologist who tested his urine and said he had fatty acid bi-products in his urine. (Free fatty acids). Wouldn't that mean he wasn't metabolizing fatty acids, that his body was getting rid of it? Daniel put a lot of weight on after putting him on whole milk as requested by his family practice Dr. He gain a lot of weight! But wasn't any stronger. Actually, the weight held him back even more. I have notice the dark circles and less strength comes depending on what foods he consumes.His energy level seems to go up and down. I am going to attempt to limit those foods as much as I can. He is 14 now with a mind of his own and a pretty much picky eater. However, I cook the meals and deliver his food to him, so what can he do? I will talk to his neurologist about tolerex at our next appt. I'll let you know of our results. Raena
CommentsI just read your site and what a beautiful site it is! Very colorful! I was wondering if there was any yeast or candida detected in skylar's lungs before the lung collaspeor after. Upon research, I found that yeast can grow in the lungs also. Learn something new everyday! You stated that Skylar was a very strong baby who later Dx. at 7 weeks as a floopy SMA1. Hoe true it is how all SMA babies are different. Daniel hardy move when I was pregnant with him. He was born floppy and had a cat cry. He rarely cried, moved, but was very alert. Milk formula made him constantly vomit. Milk formula had the same effect on my daughter was was very colicy and screamed a lot. my son started getting stronger after taken him off milk formula and putting him on isomil which I believe is a rice formula. He did real well on it. When he was on milk after getting off formula, he always looked sick with dark circles under his eyes and was getting weaker. As he grew milk seemed to cause diarrhea with him, but tell a kid he couldn't have icecream. Icecream caused him to reflux. He would eat it when we went to golden corale resturant and he would reflux it up. Looking at your daughter's pictures reminded me of how small DAniel was. He looked like a walking skeleton. He looked like his body was starving and he wasn't getting the nutrition he needed. Very small, easy to knock over, I'd remember the time a child bumped into him at daycare which left an egg knot and scratches over his eye. I'd go to the store and people would look at me as if I wasn't feeding him and as if I caused his egg knot. I took him out of daycare and put him into a daycare for handicapped children and had the same problem. When Daniel stopped walking at 6 , he would crawl or roll to where he needed to go around the house. We finally was able to get a wheelchair. As far as yeast, he seemed to always have a white build up on his tongue and bad breath. Cleaning his mouth didn't help as it would appear again the next day and no doctor ever told me what it was or gave him anything for it or told me how to prevent it. Today, as long as he doesn't have a lot of milk products, he rarely hets thrush, however I have noticed his skin cells seems to die at a fast rate or something. I bath him and gobs of skin flacks off or white skin between his toes. The very next day, same problem. Now we are seeing this on his scalp. He also develops dark skin patches the drematology says is ancanthosis nigracans often seen with insulin problems, but his insulin came back fine. Sometimes he has a yellow color to his skin like you would see with jaundice. About FLAXSEED: I tryed that with daniel also. He got worse and he was born with a flat tan birthmark on his ankle. Just one week of flax seed, he developed dark dots of pigment within that flat dark birthmark-flatmole what ever it is. Dermatology cut it out for testing because it looked pre-cancerous. It turned out to be nothing serious. He had had it all his life since birth and at age 14, taking Flaxseed had changed it's appearance. Flaxseed is a fatty acid. When Daniel was 9 we went to see a urologist who tested his urine and said he had fatty acid bi-products in his urine. (Free fatty acids). Wouldn't that mean he wasn't metabolizing fatty acids, that his body was getting rid of it? Daniel put a lot of weight on after putting him on whole milk as requested by his family practice Dr. He gain a lot of weight! But wasn't any stronger. Actually, the weight held him back even more. I have notice the dark circles and less strength comes depending on what foods he consumes.His energy level seems to go up and down. I am going to attempt to limit those foods as much as I can. He is 14 now with a mind of his own and a pretty much picky eater. However, I cook the meals and deliver his food to him, so what can he do? I will talk to his neurologist about tolerex at our next appt. I'll let you know of our results. Raena
CommentsDear Skyler: You are such a beautiful girl. Wishing prayers for a speedy recovery. Looking forward to meeting you someday as well. Aloha to you and your family from Hawaii!!! Ava and Mommy (Kau'i)
CommentsDear Skyler: My mommy forgot to tell you that if you would like to meet me my webpage address is: www.geocities.com/kauisbabyshower. Hope to meet you real soon.
CommentsHello sweet girl, I am sending lots of hugs and wishes for a quick recovery. I hope you are feeling better this afternoon. Lots of love to mommy & daddy and your big brother & sister!
CommentsWe are thinking about you precious Skyler and praying for you to be home SOON and to be feeling much better. We love you and Lily and I send you hugs and kisses....lots of them and have asked Nathan to go and keep you company! We love you and your mommy sweetie!!!
CommentsI hope you can get better and home soon Sky... I am praying really hard for you...and am joining in the lighting of candles tonight at 7 pm Hugs and prayers to you
CommentsHi skyler, you are very cute! lol I have a son that is 2 he was born on november 2nd 2001. I also have a daughter that is 7 months old she was born on august 26 2003. My son, when he was born, had breathing problems he was admitted to the hospital about every other month. The lord blessed us and he finally grew out of it. I hope the best to you little angel!! and your loving family. By the way you and my son C.J. would get along great he loves Blues Clues lol Just remember there is always an angel watching over you and god wouldnt give u more than u can handle. God bless you all The Weiss Family
CommentsHappy Birthday sweet missy girl! I hope you have a special day. Are you going home soon? You and mommy I'm sure will be SO happy to be home. And your room is all fixed up I heard. WOW daddy has been very busy! HAPPY HAPPY 3RD BIRTHDAY SKYLER Connors auntie laura-marie
CommentsHAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY PRECIOUS SKYLER, HAPPY BIRTHDAY TO YOU!!!!!!!! Yay, the Bingaling is three, whoopee!! We love you, Sky!!! And you too, Kim, Jeff, Casey and Luke! We can't wait until you are all home together and can properly celebrate. Sending lots of love and prayers always...
Commentshello skyler, mommy,daddy,luke and casey, I hope you all are having a good day. I get updates from Karen on how you are recovering. You have been doing great big girl. i love your photo that is posted on smasupport. you are such a cutie pie, just like your big sister. my thoughts and prayers are with you. laura-marie down in NJ!
CommentsSending you many, many greetings from the Austrian - Czech border! ---Lena
CommentsHello Skyler and Kim, So glad to hear you are home!!! Have a great day checking out all your toys that you haven't seen for awhile, most importantly Luke and Casey and DADDY!!! YEA!!
CommentsHello Hello there big girl! Are you having a fun day with your toys and mommy? I hope mommy had a nice mothers day yesterday! Hope you have a nice quiet week. love, laura-marie of 'auntie laura-marie' to tim, owen and connor fame
CommentsHi Skyler, Last week I finished the quilt square for you. I picked a Cinerella - arn't all girls little princesses? I am sure you are. Many greetings from Austria ---Lena
CommentsI loved your story i think its so sweet and i love the name Skyler!!:):):):):):):):):):)):):):):):)
CommentsThanks for such an informative site! I'll be back often to learn more about things that I can do for Charlie. Blessings and hugs!
CommentsJust a note to let you know I was thinking of you. Skylar is a cutie-patootie!!! We loved reading your story. Thank you for sharing your story. Take care!!! :) Meghan from New England Home Therapies
CommentsAll I can say is you are all unbelievable! I would love to see you Kim and meet all your kids...Thanks for letting me share all this... Love, Allyson
CommentsSky, words cannot express what a special little girl you are. There is so much to look at on your website, I've been here for an hour. I hope you have a great Christmas and I hope Santa brings you lots of loot!!! Keep on keeping on little one, and if my angel ever comes to visit you, tell her I love her, Love Stephanie
CommentsSkyler!!!! I wanted to wish you a Merry Christmas! I hope you have a wonderful day full of surprises and that you get everything you wish for and even more! I can't wait to see you again!!! Mommy said to tell you hi too. Have a GREAT Christmas tomorrow and tell Casey and Luke Hi from me too!!!
CommentsHi!!!! Sorry I haven't signed your guest book in awhile. I hope you are doing ok and are enjoying the winter so far. I have a new website! It is <a href=" http://www.mjthesmaqueen.com/"> MJ - The SMA Queen</a>....If you want to check it out. If you don't see your website on my friends page (and would like to) e-mail me, and I will put you up ASAP. I hope you have a <img src="http://www.mjthesmaqueen.com/valmiscani.gif">! and remember, <img src="http://www.mjthesmaqueen.com/valani3.gif"> MJ
CommentsHi !!!! <img src=" http://www.mjthesmaqueen.com/image006.gif"> Mickey and I wanted to say HAPPY FEBRUARY!!!! I hope you are doing well today. Big hugs to you and your family! Love, <img src="http://www.mjthesmaqueen.com/MJButterfly.gif"> http://www.caringbridge.com/ny/mjpurk - My Journal http://www.our-sma-angels.com/Margaret/ - My Original Website http://www.mjthesmaqueen.com/ - My New Website
Comments<img src=" http://www.mjthesmaqueen.com/polarbear_val.gif"> I hope you have a very happy Valentine's Day! Love, MJ
CommentsHi: I know that I am early, but I wanted to wish you and your family a <img src=" http://pic17.picturetrail.com/VOL815/2822478/6549091/88274216.jpg"> & <img src="http://pic17.picturetrail.com/VOL815/2822478/6549091/88272883.jpg"> I hope you enjoy your Spring!! Love, <a href="http://www.mjthesmaqueen.com/"> MJ </a>
CommentsThis is a beautiful tribute for Skyler and all her friends here and those who are now playing together in another dimension. Our pride in you, Kim, Jeff, Luke, Casey and Skyler is never-ending. Your creativity has once again come forth, Kim, to produce a wonderful site to share with others. As always, we pray that through the efforts of so many a cure will come soon. We love you. Dad & Mum - Papa & Nana
CommentsI like the pictures of you Skyler! Thank you for this e-mail. I think you are really nice. When I meet you I was in preschool and now I just graduated kindergarten.Skyler,I think you are a real smiler. LOve, erin
CommentsHi Kim, Jeff, Luke, Casey, and Sklyer!!! I am so happy that you have this wonderful website, not only to make people aware of SMA, but for the selfish reason that I get to know you all better. I only wished that we lived closer so that our kids could be as close as we were growing up. You have such a special family! Lots of Love, Beth Flaherty Powell
CommentsHello, I am just a passer-by...went on Google to find pics of holding hands and came across the one of Gilly and Skyler holding hands and was drawn to it...then I began to read your site and even went to Gilly's. I was deeply touched by your site and the faith of your family. I am days shy of giving birth to my second child, and needless to say was quite emotional "meeting" your family. Thank you for allowing me the opportunity to see into your lives...life has been hard right now, but I was greatly encouraged through your site...I pray the Lord bless you all richly with His peace. That your family continue to grow in His surpassing love. I was touched greatly by your story and will continue to pray for you all...keep trusting Him. He will continue to provide you with everything you need! All my love, Heather
CommentsHi! How are you? I can't believe it is already November! It has been nice and warm here so I am not ready for Thanksgiving. Hope you are able to enjoy the upcoming holidays! Have a great week! <img src=" http://mjthesmaqueen.com/pilkids.gif"> MJ www.mjthesmaqueen.com
CommentsHi! Just wanted to wish you an your family a very happy Thanksgiving! Have a great day and I hope you enjoy yourself with your family! <img src=" http://mjthesmaqueen.com/PILGRI317.gif"> If you send me a picture of you and your family or just you, I will add it to my page next week! <img src="http://mjthesmaqueen.com/trkyb5wscp_e0.gif"> MJ http://www.caringbridge.com/ny/mjpurk
Commentsyou have such beautiful childern and god bless them all
CommentsHello again, I wanted to wish you and your family (a bit early) very happy and healthy holiday season. I'll be back again very soon! Happy, warm hugs coming your way! <img src=" http://www.mjthesmaqueen.com/SantaBearHappyHolidays6555.gif"> MJ http://www.our-sma-angels.com/Margaret
CommentsThank you for sharing your lives and God's love with all of us. I'll pray for you every day. Love and hugs from your new friend (Hey- can I still be an sma angel at 46? LOL)
CommentsHello! I thought I would share this beautiful website with you and your family. <a href=" http://www.wisehearts.com/CmsMF.htm">Merry Christmas to My Friend!</a> Wishing you and yours a wonderful week! <img src="http://www.mjthesmaqueen.com/schlittencujo.gif"> MJ http://www.caringbridge.com/ny/mjpurk
CommentsHi we saw you listed on MJ's friends page. You are very brave just like MJ and my daughter Maddison. Maddison is five and sends her love to you. We are sending you hugs and smiles today. Love, Janice Troy & Maddison www.caringbridge.org/visit/maddisontroy
CommentsSkyler and Kim, What a journey! While I have experience some struggles with family and friends, I can't say I know what you days are like. A student who suffered with Cystic Fibrosis died in my arms. Kristin was finally freed and is now experiencing her dream; "To swim in the cloud pool of chocolate". Kristin was a gene therapy candidate until February of that year. When Make a Wish Foundation flew her to Disney, her parents were concerned about her missing school. After sitting in the hospital with Kristin and her family on numerous occasions, I knew this trip would be a dream come true. Later, I was awarded The Fight for Life Award in her memory and I continue to educate others and provide academic tutoring for students fighting this battle. Kristin had to be very careful of her exposure to others in order to reduce the onset of infections. Her lungs were so very compromised. There were times when she couldn't come to school because of the various virouses. She was tiny in size but infinite in courage, strength and wisdom. Kristin was cautious and caring and encouraged her parents to do things but made sure that her health did not prevent her sister and brother from doing things when she was too sick to be exposed to others. I keep Kristin's "glamour" photo and my award in my office so that I can tell others about her amazing story. Peace to both of you! Alberta (Laura's aunt)
CommentsWe love you guys! I just felt like I needed a 'bingaling' fix tonight and I have had it now. You know I will talk to you tomorrow but please, please PLEASE more pictures!!!!!!! I LOVE seeing Skylers pictures! Kudo's on the journal too :)
CommentsHello There! I'm sorry I haven't stopped by in awhile. I've been busy with homework. What have you been up to? I hope you are doing well and have a great week. <img src=" http://www.mjthesmaqueen.com/snags/IjustWanted2sayHi-snowmen.gif"> MJ http://www.caringbridge.com/ny/mjpurk - My Journal http://www.mjthesmaqueen.com/ - My New Website
CommentsHope your Valentine's Day is full of fun! <img src=" http://i43.photobucket.com/albums/e394/cbfiles/vday_first.gif"> Love, MJ
CommentsHi! Can you believe it's almost Valentine's Day? I can't! I hope you and your family have a wonderful week. <a href=" http://mjthesmaqueen.com" target="_blank"><img src="http://i43.photobucket.com/albums/e394/cbfiles/89f389ce.gif" border="0"></a> MJ
CommentsHi Skyler, We love your Christmas pictures! You are such a beautiful princess! Hope you are feeling better very soon! Casey Daws
CommentsHello everyone!! I was looking up SMA and came across your site, it is beautiful!! I have 3 aunts with SMA type 3 and another aunt just diagnosed with SMA type 4, and yes they are all sisters. They are all very special people to me and worry about others before they worry about themselves. I love the site and will come back often. GOD BLESS ALL WHO READ THIS!!!!!
CommentsJust wanted to add my Happy Birthday to you Skyler!! You truly are a beautiful princess. Congratulations on the big FIVE! Krystal
CommentsHi Skler, I was searching threw your site here and it is very interesting.My name is gemma and i really like this site and you seem very happy and so does your family..please email me back to tell me how you are thanxs gemma x x x
CommentsSky, He there little one. I am sitting here talking to your mommy on the phone and came by to see your photo's and sign your guestbook. You are one of the most beautiful little princesses I have ever seen and I love your hair. I would love to have the chance to come and meet your family and swoop you up and give you the biggest hug EVER!! Keep up the good work and don't be too mean to your brother and sister. Taye and I are sending our hugs and kissess to you. So if you get them and want to share, give your mommy and siblings some too. Love you, Stephanie,Taye, and ^Malia^
CommentsHi, I just wanted to let you know I visited your site. Skyler is such a cutie! My little 3-year old daughter saw her pictures and prayed for her. Your daughter's site is such an inspiration. Melissa
CommentsHey,Bingaling! You know...I never think to sign your guestbook! Whaddya know about that?? Just thought I'd pop in and tell you how much I love you...and your brother and sister...and how proud I am of all three of my amazing kids! You have given me such strength over the years, Skylie, and I thank you SO much for that...and a whole lot more. You have brought me together with some incredible people, who have become some of the best friends I have ever had...and you have allowed me to become part of a world that is made up of some of the most amazing people ever...and some of the most ancient souls...you can tell just by looking into all of your eyes! Anyway, honey...I love you. You are sleeping now, after a long, restless night...so I thought that I would pop on, say "hi" and then wait for you to wake so that we can start our day :) Lots of love, Mommy
CommentsHey Bing! Lily and were checking out your beautiful site and looking at all your pictures...we love you and your family sooooooo much and I hate going a day without talking to your wonderful momma and hearing your voice (along with Luke and Casey!) in the background. Lily and I can't wait to see you NEXT MONTH! Think of ALL the pictures I will be taking of you guys with THE Billy! Hugs and kisses to you, you beautiful girl you! Love, Lily and Amy
CommentsSky, Hi there little princess!!! Just wanted to get on here to let you know that I just looked at ALL your pictures,and you are such a beautiful little girl. I love your pretty little lips.I wish more than anything, I could be there right now to kiss them off your face! I hope you like the blankets and dolls Taye sent to you. I know Casey and Luke liked their stuff because they told me on the phone!! Taye thought the blankets were perfect for you because they were SO SOFT, and we know you love to cuddle with your mommy. When we get a chance, Taye will send you many more things!! Keep singing your beautiful songs, and ignoring you brother and sister when they fight,lol. I hope you are learning a lot in school and send me some smooches soon. Tell my baby we said hello, and we miss her VERY MUCH!!! We will write you soon and talk to you a little later today, Love Stephanie, Tim,Taye, and ^Malia^
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