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.

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 house..it'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 there..one 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.

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.

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!

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 marchforbabies.org and we are Team Sammie Wammies in Plattsburgh, New York!!

Remembering..

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 mommy..my 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.

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!

Preschool and Sammie's 3 years old!

Sammie had a party for his 3rd Birthday at school!! He had a fantastic time! His make a wish granters brought cupcakes and balloons and presents! All his classmates were able to be there to enjoy the fun time! As you can tell from the picture he looooved the string on the balloon!
Preschool has been going great for him! I truely think he enjoys it there! The staff is wonderful! Sammie is getting better at cruising around in his gate trainer and he can wave now! We're pretty sure he has said bye on a couple of occasions! They are working on all sorts of wonderful things in preschool!
We had a party for Sammie's birthday this weekend! Lots and lots of family and friends were able to join us and it turned out to be a beautiful day out! I still can't believe my little guy is 3 years old...but it's true! He has really started to interact with people and sort of play with other kiddos. It's so exciting!

First Week of Pre-School!

So Sammie had his first full week of pre-school last week! He LOVES School! Well at least he seems to love it! He has a very nice aide named Alyse and his teacher is Miss Mandy and all the ladies in the classroom seem like real sweethearts! He has 7 classmates and they all seem like wonderful children! He goes to school Monday thru Friday from 8-1...a very long day! He is always super happy to see me walk in at the end of the school day and usually passes out in the car on the way home or shortly after!
They are doing a All About Me theme and are learning about themselves and the people in their families! Very exciting stuff going on!
We bring his gate trainer to school each day so he has it there to use and the therapists can work with him there also! He has been trying out all sorts of new foods! The kiddos all eat the school lunch so Sammie has been indulging in some fine cuisine! Well trying it out anyway!
It's still difficult to leave him at school..I still want to go pick him up before school is out but I have so much homework and need to start substitute teaching so I'm glad he has a wonderful classroom to learn in while I'm busy doing Mommy stuff!

Make a Wish!

Hello all!
Sammie is doing great! He will get strapped into his very own gate trainer for the fist time tomorrow morning! Very exciting news! I can't wait to see what he does and where he goes! His therapies have been going well! He's been chatting up a storm..we're not sure what he's saying but it sounds great! haha!

He starts school in a couple of weeks and we are super excited about that! We will probably leave the gate trainer at school because it's big and doesn't fold up. He'll be riding the bus to and from school (thats sorta a trial basis!)!

The make a wish people contacted me and the ball is rolling on that. Melissa and Brian, Sammie's wish grantors, came to visit him and brought him all sorts of his favorite treats! They were very sweet and we're happy to be working with them to figure out what Sammie's biggest wish would be =) If you parents have any fabulous suggestions I would LOVE to hear them! Insurance pays for Sammie's medical equipment so we don't need t worry about that but maybe you've heard of a wonderful toy, peice of furniture, or some other thing I've never heard of that my Sammie would love to have?!?! I posted some photos of him opening his gifts! Hope you enjoy!

finally a couple new pics!

Bye bye Enalapril!

Sammie saw to docs last week and all is well and wonderful!
First he saw Dr. Drucker, his Cardiologist. She was very pleased to inform us that Sammie's echo looked the same as last time. That means his heart function is the same and hasn't gotten any worse. Because his function was the same she decided to take him off the Enalapril and increased the dosages of Digoxin and Carvedilol. One less drug is sooooo exciting! One less thing to make sure he gets and no more waking him up to give him meds! woo hoo! We won't see her again for six months =)

Sammie also saw Dr. Hastings, the Optomologist. This was the same day as the Cardiologist so by this point he was exhausted and cranky. He did however perform well enough that we don't need to see her again for a year! It's great that his appointments are getting less and less!

Today we met with an OT and PT to do half of Sammie's pre-school evaluation. We had to pick one of the local agencies and then they try to get him to perform all sorts of things and ask a bunch of questions to get a better understanding of where he is developmentally. They rated Sammie at an 8-10 month level. A little lower than his current therapists but you have to remember that these therapists are not familiar with Sammie and have only seen him for one hour of his whole life! So we will meet with the ST and Special Education teacher next week to do that half of the evaluation.

We're still not sure what's going on in the fall. We def. think he'll qualify for pre-school..the problem is whether or not there will be a pre-school available. He is on the list for one that "might" close due to finacial issues and the other one is full. Hopefully someone drops out cause he's next on the list! Maybe someone will move! Whatever happens I'm sure something will come together! It always seems to work out!

1p36 link

Hopefully the link works!!
Here's a link to an article with info about 1p36. The organization is called Unique and they are based in the UK. The info is put together in a very reader friendly way.for those of us who aren't doctors!




http://www.rarechromo.org/information/Chromosome%20%201/1p36%20deletion%20FTNW.pdf

Updates....

Hey all..
Just a few updates about Sammie's 6 month check-ups.
Sammie saw Dr. Contampasses, a Developmental Pediatrician. He signed off on Sammie basically because there are already a few aganecies following Sammie's progress and if he signs off then it's one less visit for us! I'm not at all disappointed in this decision..not that I don't like the doc but he's the one that always reminds me how far behind my Sammie is. Like I don't already know! =) So he did one last eval on Sammie and put him developmentally at about an 8 month old level. He signed off and said if we ever needed anything for Sammie that we could contact him anytime!

The Sammie saw Dr. Hubble, Otolaringologist (sp??), and Sammie's tubes look great! The audiologist in Glen's Falls wanted me to ask about an unsedated ABR but Dr. Hubble and the audiologist Sammie saw at Fletcher Allen said he couldn't have an unsedated ABR because of his tubes and they didn't see the need to have and ABR till fall 2010 unless they felt there was more hearing loss. So I'm not really sure why the audiologist in Glens Falls feels the need to have one done!? Oh well..I'll let her know what Dr. Hubble said and go from there!

May 19th he sees Dr. Drucker, Cardiologist and Dr. Hastings, Optomologist in Burlington. Don't know how it worked out that they're on the same day! I love Dr Drucker but I hate going to see her...I'm sure all is well and we will leave with some med increases because he's gained weight..hopefully that will be all to report!

All of his therapies are going well. We are in the process of trying to get a gait trainer for him..trying to get the insurance to pay for it. What a pain in the ass. I want him to have it for the fall. We are also in the middle of trying to get him into an 8-1-2 classroom for the fall. The only one around here is at a place called Pyramids and rumor has it they could be closing. I really really hope that doesn't happen and if it does then I really really hope another agency buys them out and takes it over. A school closing like this could devistate the special needs community. They also have 2 6-1-1 classrooms and a 12-1-1 classroom. A lot of classrooms and a lot of services would be lost. Not to mention a lot of people would be out of work. So we'll hope that doesn't happen and that he'll get in =)

Sammie is still obsessed with turning the pages of books, pulling peoples hair, those stretchy weird balls, and pulling strings! He's been doing such a good job sitting up and rolling over and trying to take steps! His OT brought over some grass seed and Sammie grew some grass. A little green thumb I guess! If you know me then you know I tend to kill plants...not on purpose..I'm just not that good at it. But Sammie's grass is about 5 inches tall and in need of some mowing! haha

We continue to think about and pray for our dear friends Kate and Emma. Sending love to them always and missing little Emma.

Updates....

Hey all

Little Emma

I am devastated to write that Sammie and I have lost a dear friend.
We first met Emma just over a year ago at Fletcher Allen Health Care in Vermont. Sammie's geneticist had called me to inform me that there was another 1p36 diagnosis..Sammie wasn't the only one anymore. I was saddened to hear of another diagnosis but happy to hear there was another family so close by.

Kate and I hit it off right away! We spent hours together over the last year at the hospital. I called every time we went for appointments and her an Emma would meet us in the Cafeteria when we were done or had a break between appointments. Kate pretty much planned most of the 2nd Annual 1p36 Conference in Boston and started the Vermont non-profit organization so we could raise funds for the non-profit for the conference. She did all this while being a single mom to her beautiful Emma...she was a wonderful mother..a passionate mother. I can't believe her loss.

Every time I look at my Sammie I see Emma's little face in him. I know they would have been great friends. I keep hugging and kissing him..reminding myself that our time here is short and we just don't know what can happen.

I ask that you please send your thoughts and prayers to Kate and her family during this devastating time. Please keep little Emma in your prayers as well.

Just stuff..

Hello all..
It's been a little while. Sammie and I have been very very busy! Story of everyone's life!
Sammie has been doing great! We just moved..only down the street but Sammie seems to like the new place. I love it..my last place was on the third floor and while I'm sure the two fights of stairs were part of my daily workout I am NOT missing them!!
My little Sammie has been sitting up on his own for like 15 minutes at a time. I have even left him sitting unattended for a few minutes.
He still loves to be on his feet and I have him walking around (with my assistance of course) as often as possible! He takes excellent steps with help! I have noticed more frustration lately. If a toy rolls away and it's not within arms length, he will try to roll and get it and then sometimes he gets angry enough that he shimmys over to it or he gets up on his knees (not his hands) and pushes off his knees. So he is certainly trying to master the art of problem solving. While it breaks my heart to see him try so hard it also makes me feel happy that he is trying to solve/fix the problem!
He's eating pretty well! A lot of the same stuff still. I want to chat with his doc about the pediasure..there's a lot of sugar in it and he has been drinking it for a year and a half now. He LOVES chocolate chip cookies and goldfish. I think he would live on those if I let him!
We ran into his old PT and she couldn't believe how much he had grown into a little boy! He is very long and still a little bean pole! It always amazes me when people tell me he's huge. He's 28 months and only 19 pounds..that is tiny..I mean he's long but very skinny..little twig limbs =)
We are currently trying to raise money for the March of Dimes. Our goal this year is $1000. If you would like to make a donation you can find us on the March of Dimes page under team Sammie Wammies...go ahead check it out!

Make an on-line slide show at www.OneTrueMedia.com

A New Year..

It's been just a little while since my last post about my Sammie! We've been very busy with the holidays and I'm happy to say we survived another year!

It's been a crazy...busy year to say the least!

I'm sure we had at least 40 something specialist appointments and 100's of therapy appointments! But all is well and Sammie is doing wonderfully! He did have a couple of minor surgeries this year and all went well with those! He also got hearing aides which seem to have helped him a lot!

We had a lovely holiday but I'm not sure Sammie likes Christmas all that much! He woke up, opened one toy and only wanted to play with that one so he got angry every time we tried to have him open another one! We had a big family party to go to that day and he just kinda tuned out and fell asleep for the most part! We're pretty quiet around here so the big parties can be overwhelming for him! We did go back to Grammy's house after the party though where I enjoyed a nap (I was a bit under the weather) and Sammie enjoyed a soothing rocking chair with his GG! Thank you GG! While we enjoyed visiting everyone we are happy to be home and back into our normal routine..if you can call it that!!

I just want to remind you all how very special you are to me. Sammie and I are surrounded by wonderful people! We have to best family! They are ALWAYS there for us...they have done so many things for us and supported us through all the good and bad times we've had over the last year. They helped me get to the annual 1P36 conference and some of them were even able to come with me to meet my other family =) I can't possibly express the gratitude and love I have for the people in my family.

To my 1P36 family who I check in on everyday..who answer all my questions and take the time to respond to my posts. I would be so lost without their guidance, love and support. I feel truly blessed to have them in my life..even if I haven't met some of them!

To my friends..old and new..who are there for me everyday..who bring some normalcy into my life and help make me feel as happy as I do.

When I look back on this year..I have no regrets..when I look to this new year I have hope, love and happiness! Thank you again to all of you and I hope you all have the most wonderful year.

Hugs xoxo