Wednesday, January 14, 2015

Another year of growth!

It has been a longtime since I've posted about Sammie....I feel neglectful. Though I'm not sure who reads anyway! Sammie has been working so very hard the past year and a half on his walking. He generally crawls around the house from room to room but spends most of his school day walking from point a to point b. He continues to use his gait trainer for long walks and also practices holding someones hand or hands. Honestly, I think he could just do it on his own but he is still scared to let go. Oftentimes I find myself letting him go without him realizing and he is able to stand and take up to 4 steps before loosing his balance. I truly belive with some more time and added confidence he will be walking the school hallways and our house hallways without a second thought. I picked him up early the other day and watched him walk holding an aides hand. They were walking all around the classroom collecting his backpack and jacket. He was walking with such ease and so naturally. It took my breath away. I guess because I'm usually the hand he is holding I never really get a good look at him walking. He looked so grown up..he looked like a walker. It melted my heart. So many hours have been spent working toward these moments and to think that one day he will just stand up and do it on his own is so exciting! Sammie also continues to communicate in his way. He says "mama" for women, "papa" for men, "ball", "I want ball","truck", and "pet" consistently. He is able to say more in a one on one setting but does not yet generalize those other words. Mama and papa seem to make sense. We spend many years refering to our parents as mom and dad so they are repeated constantly. He is OBSSESED with balls so he learned if he could say it and request it then he would get a ball! Everytime he sees a truck and says "truck". Marc was mowing the lawn with the tractor this past summer and Sammie was playing in the livingroom. The windows were open and I could here Sammie saying "truck...truck". When I entered the livingroom I couldn't believe that Sammie had pulled himself up to standing infront of the window. He was watching Marc drive the tractor around the lawn and saying "truck truck"!! How wonderful that he is able to recognize the sound, determine where it is coming from, pull himself up to locate it and be rewarded with seeing the "truck"! Sammie has grown so much in the last year. While he still remains several inches and many pounds smaller than his peers he now within the growth chart. His curve has always been slowly rising but well below the typical curve. For the first time in 8 years his curve just touches the typical curve. It may not seem like much but it is! Sammie enjoys eating and is actually able to consume lots of food and it continues to baffle me as to where it goes? His little body and heart are just working so hard all day..I guess it must all get burned up. I continuously ask every physician I meet and they agree...maybe there is no other explaination. Sammie tries very hard to feed himself. Still working on using utensils effectively but always making progress. For the most part I believe that Sammie enjoys school. He loves riding the bus or in the van. He loves his teachers and all of the people that work with him. He gets mad sometimes and doesn't want to do the work but they never give up on him. He is lucky to be surrounded by people that believe in him and step it up to the next level when he reaches a milestone. There is always room to grow. He continues to go to Medicine Horse Farm. While he enjoys riding Ms.Lily the most he has also ridden another horse, Dell. He is able to stay up with minimal assistance and has made progress in his riding and strengthening his core, which has assited in his walking ability.

Thursday, February 21, 2013

2013..already?!! Sammie has had a fantastic year . He is in 1st grade at a lovely school and still loves riding the school bus! His teacher. PT , ST, and OT are all wonderful and have been working him each day and we have seen so much progress! Sammie is crawling around everywhere , getting into things, knocking things over, and just messing up the's great :). Sammie is beginning to pull himself up to his knees and still enjoys being on his feet. He is now able to roll around and sit-up from laying down. He walks all over school with assistance, he enjoys going up the stairs and seems happiest when on his feet! He'll get step at a time! Sammie is increasingly aware of how effective and ineffective communication is. His receptive language is far beyond his expressive and it has become obvious that he is aware of this. He is able to indicate his wants and needs with yes/no questions. He is able to shake his head yes but stubbornly prefers to do a small nod with a. "Hmm" sound attached to indicate a yes reply. He can shake no but prefers to give you a look like "are you kidding me!". He says more, ball, sponge bob, baby, mama, firetruck, and randomly comes out with other words. He signs all done and is extremely accurate with the sign :) Sammie continues at Medicine Horse..we've missed sessions recently due to the frigid temperatures here in New York. Sammie's circulation is not great and his little fingers freeze very quickly. Sammie has really started to take an interest in toys. He loves rolling cars and trucks, making noise with shakers, and listening to and turning pages in books. He digs around in his toy box and I see him crawl over to Thomas' toy box (he 's 5 1/2) and dig around till he finds the talking Iron man figure, it warms my heart to see him excited to find a treasure! Sammie recently had his cardiology check-up. Everything is the same..I'm grateful nothing is worse but prayed things would look better. I'm not disappointed just feel even about it. I hope and pray that one day his heart function looks better.

Wednesday, February 8, 2012


Hello friends!
Not sure anyone still follows this but felt it in my heart to update =)

Sammie is doing so wonderful..he is 5, in Kindergarten and progressing very well!
He loves school and gets so excited every moringing when he sees the bus pull up, yes he rides the bus, a difficult decision for me to make but I have to work so he rides the bus. He sits in the front seat with one of the lovely bus monitors and enjoys looking out the window while he rides. The bus staff just love him and are happy to see him everyday!

Sammie has been participating in Medicine Horse for almost a year! He loves it, his horse's name is Miss Lilly. It's been a cold winter but Sammie has been patient with the weather and tolerates riding.

Sammie continues to work on crawling and walking, he needs help to walk but loves to be on his feet and really enjoys going up and down the stairs with help. He also continues to work on communication. He is able to shake his head yes and no and say mamama, bear, apple and cookie. He has different sounds for yes and no but we really attempt to get him to shake his head. He also started using a big kid cup. He is very messy but enjoys being independent! Thankfully he enjoys most foods so he eats pretty good!

Sammie continues to be a sweet, loving little boy. He has blessed me everyday with happiness.

Monday, April 26, 2010

A beautiful walk!

Thank you to everyone who donated to March for Babies! And also a huge thank you to everyone who traveled to Plattsburgh for the walk and to all those who live here and were able to make it! We had a beautiful day and a beautiful walk!

Twenty four people were present to support Team Sammie Wammie's! We raised $1046!

Monday, April 19, 2010

March For Babies!!

Hello Everyone!
I'm pleased to announce that we have a fabulous group representing Team Sammie Wammies this year!! Sammie's Aunt Lynn, Aunt Andrea, Uncle Jam, cousins Isaiah, Owen, Mia, Landyn, GG, fantastic family friend Sally, and maybe a few more!!

My fundraising efforts haven't been as prosperous as last year but every little bit helps the organization! We're very happy to so what we can to help raise money for the March of Dimes. Both my sister Lynn and I have spent time in the NICU with our babies and both of us had to spend many sleepless nights at Boston Children's Hospital with our sick babies. Our famiy supported us through these times and continue to support us. We have personally seen the wonderful effects of the March of Dimes organization and hope you will donate to us or eve start your own team!

You can go to and we are Team Sammie Wammies in Plattsburgh, New York!!

Wednesday, March 31, 2010


Today has been a year since Sammie and I lost our dear friend Emma. I wanted to write something about her because I was thinking if I was her mommy I would want to know that people are remembering her and how much love and joy she brought into this world.

I remember the first day we all met..I was so happy to have someone so close by to share my adventures of raising a child with 1p36. She was so beautiful (like her mom) and I thought "my god..if I had a girl..thats exactly what she'd look like!". My mom was with me and we were all so excited to meet.

Each time we went to Vermont we met up. Kaitlyn was the parent that planned our 2nd annual conferernce and she also pretty much, single handedly started up the initial procedure for our nonprofit organization. She got the ball rolling! She was so wonderful with her peanut and a fantastic advocate!

The news of Emma's passing came suddenly...I still can't believe it. I think of them almost daily..Sammie's would be best friend and her friend who totally understood my life, lost in a heartbeat. I can't change whats happened, I'm grateful to know both of them and share in some of Emma's memories. She was a beautiful, sweet, baby girl who is missed each day.

Both of these girls will be in our hearts always. We miss you Emma and we love you.

Monday, February 22, 2010


Hello all!
Been a little bit since my last Sammie Blog! I apologize but we have been super busy like everyone else on the planet =)

Sammie is doing great! Preschool is going wonderfully! He just finished a weeks vacation..that I think he enjoyed! I didn't have vacastion so we didn't get real crazy but did enjoy some down time while it lasted! He has had 2 parent teacher conferences and his teachers and therapists are as pleased with him as we are =) He is continuously making gains in the right direction! He is still working on walking/standing..he loves to be on his feet but still needs to be supported. He's doing pretty good in his gait trainer and loves to hold on and walk around! He also brings his leg up when in front of stairs, he steps up on the stair, and with as much weight as he can he'll go up the stair! Pretty impressive! He has had CME therapy twice at school! It stands for Cuevas Medek Exercise Therapy. Designed by a Venezualian man named Ramon Cuevas in the 1970's! If you google it you'll find videos! I'll try to post the one of Sammie on here! But just in case check out other videos! He has been using PECs at school with some success. He comes home with all sorts of fabulous art projects! I'm trying to make sure I don't save all of them! haha

Darby is back and we're all so happy about that! She stayed with her mom for a few months but decided to return and we have all enjoyed spending more time with her! Sammie loves her so much and she is so wonderful with him =) She has really been helping us out by watching Sammie here and there between work and school! She is working on training her Geniue Pigs (sp??!) If you have any suggestions let me know and I'll pass them on!

Sammie went skiing at White Face a couple of weeks ago! The whole preschool was invited to go and they have some adaptive skis that Sammie used with the assistance of the adaptive ski instructors!! How exciting! He didn't like the ride up but seemed to enjoy the ride down! I hope he learns to love it cause I do and so does Darby!

All of his recent appointments have gone well which makes us all very happy! He is no longer drinking pediasure =) we do have a weight check coming up but he has been eating like a little piglet so I'm not worried!