Update

Hello all!
Just posting some updates about Sammie!
He has made so many gains in the past couple of months I can hardly believe it. First and foremost we have a pretty clean bill of health from the Cardiologist! Yahoo! We won't see her again for about 5 months which is a long stretch for us! There have been no changes since Sammie's last echo-cardiogram which is wonderful news and she also took him of his Lasix which is a HUGE step! Of course he is still on his heart medications and always will be but the good news is that they are doing there job and he is staying the same!

Sammie is growing slowly but he continues to gain weight. We are supplementing his nutrition with a couple of things including Pediasure and Carnation Instant Breakfast VHC. He has been eating great and tolerates most foods! He does not particularly like watermelon or peaches! He has started feeding himself..not with a spoon...with his hands. He will grab the food with his fist and maneuver it until he gets it in his mouth! A few times I have seen him grab his cereal puffs using his fingers so we know he can do it it's just a matter of time and practice. He is still a little peanut but he's plugging away day by day!

He has started to show interest in certain toys. If we put him on the floor with the toys he likes he will focus on them and play with them. If they end up out of his reach he will try to figure out how to get to them and even rolls over if he thinks that will help! He loves his exersaucer and needs his fix of it a few times a day!

He has gotten sooo much stronger. People who haven't seen him in a while are always commenting on how much better his control has gotten!
He still isn't talking but he has said mama, what, and more! Not consistently but they have been duly noted! He certainly communications with us using different cries and when you ask him are you hungry he will stop crying and smile or laugh! So we know the communication is there we just have to get it out of him! We are still working with sign and he watches his video and loves it! Well he loves the cartoon frog anyway! haha

He has a Special Education Teacher Miss Crystal that comes twice a week and plays/works with Sammie! We love her and she has been a wonderful addition to Sammie's team!
He did have an EEG done and I have called twice for the results but no response (I think the dude answering the phones is a ding-dong!). But no news from the docs is good news so we will leave it at that!

He saw the eye doctor again and she thinks he is doing fine. We know he can see and his visual tracking has steadily improved. He is delayed but we know that is because of the 1p36. We probably won't know what he can see until he is old enough to tell us!
My only concern right now is that he is getting over his second ear infection this year. The kiddos with 1p36 seem to have small ear canals and lots of ear infections. A lot of them have tubes put in and we have not discussed that with his Pediatrician but I know she considers it if they have 3 or more in a year. So we will wait and see on that and hope that he doesn't have another one!

We truly feel blessed for all the wonderful people in his life who make a huge difference!