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.