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