Halloween Fun

This was the best Halloween ever! It was so warm and everyone in the family got into the spirit. Andres was quick to say "Trick or Treat" and reach out his pail. We were proud that he waited a good hour before digging into the candy. He eventually stopped after his 10th or so piece. Still, as you can see, things got pretty hairy.

Check out his titi's face, she did such an amazing job that Andres didn't recognize her. Evan found it interesting too.

Mideval Festival

It was too crowded but still fun. The fried dough was yummy, even Evan got a little...he got dusted with the powdered sugar, oops. Andres got his face painted for the first time and by the end of the day he had turned into a pirate.

Flying High

It took Dad a few tries and some cheering from me like "c'mon Dad you can do it" and "go Daddy go!" to get that kite up in the air. Once he did I took over. It was hard and I didn't want to hold it for too long. Still my folks were extremely proud.

I climbed the lighthouse by myself the way I do just about everything else. Evan got a ride from mom. I can't wait to teach him how to climb the stairs.

Our First Trip to LBI

Three summers ago my oldest niece Gaby loved to say "Super!" in Spanish which sounded even cuter. After she went back to PR, Dave and I kept it up and smiled every time. That's exactly what our vacation is, super!! We've only been here two nights but what a difference! Andres is asking to get dressed nice and early. When home he mostly wants to spend all day in his birthday suit and I have to beg him to get dressed and go out.

We go straight to the beach, which is our back yard here, literally. I tried making him a really neat Jurassic park for his dinos complete with trees, mountains and lake but he destroyed everything with a mischievous laugh. After only an hour or so we had to come back because his "underwear got wet". The surf got him so of course he stripped out of his bathing suit right there at the beach. It was back to square one. Dave had to carry him buck naked back to the house because he refused to wear "wet underwear". So funny.

Evan is eating like a champ these last two days. He had 5 ounces this morning and staying awake for long periods of time getting to know the new surroundings. I'm getting to know him pretty well now. I can tell when he's going to have a sleepy day or not. And when it's not he's a young warrior for sure (just like the meaning of his name). He kicks hard and looks around following us and turns his head.

Dave is the best dad and hubby ever! He packed the car, is doing the grocery shopping, cooks dinner and breakfast and is still sharing night and morning feedings. Too bad we can't stay on vacation for ever.

Piggy Back Rides, Train Ride & Zoo

For part of my childhood I grew up visiting Forest Park in Springfield, MA. Rickty (my older brother) and I spent our summers riding our bikes through this huge park. It was great then and even better now. I love sharing this special place with Andres and Evan. We walked there from my mom's house and on our way to the zoo we stopped at a few baseball fields and played with other visitors' soccer balls, baseballs etc. Evan came with us but sat out the train ride with abuela at a nearby bench so she could get her cuddles in. Next time Ev, we promise.

Party at Abuela's House

Joe and Raylynn are so grown, they made such good sitters at Evan's welcoming party at abuela's last weekend. It was a lot of fun. Thank you mami, for all of the great food and cupcakes, you're the best!

Ladies Man

Score!!

This is a picture of Naomi and I in the tub. I'm so happy her mommy got me bath toys for my birthday, good looking out Kara! When are we hooking up again?

Halaballoo

We had a party two Mondays ago at our house. Krista, Marco, Trey, Nina, Dana, Olivia and Ayanna came over and what fun! Dana and I got a lot of tips from Krista, the best, most organized, and thoughtful mom ever! Huge props to Dana who came despite the fact that Ayanna keeps her up ALL night. We played baby around the rosy with Ayanna and Evan and miraculously none of our monkeys fell of the bed.

Playing Nice

Mami's angels. We get along so great!

Brotherly Love

Tummy Time

Last Wednesday we saw Dr. Sherbany, who told us that Evan's reflexes had improved. He said we would never know if Evan had had Guillain Berre Syndrome on top of PWS and that we probably never would. If he had had it, it would have been caused by my colitis. He admitted he doesn't know much about PWS, but did say to me, "You know at some point he'll want to eat constantly?". I told him maybe not, I've learned of some kids who don't have severe hyperphagia. It didn't bother me that he said that (as if I didn't already know). And I didn't care if he thought I was naive or excessively optimistic, which is how I feel most of the time. I can't help it, Evan's progress and strength encourage it.

But then there are times when I worry or feel sad my baby isn't just a little bit stronger. What if we can't take him to birthday parties in the future? What if he wants to take his big brother's food (which Andres will gladly part with) or fight other kids over it? Or, I worry that we aren't stimulating him enough when he is awake, something that is critical in this first year. Since he's been home he's improved day over day but finally the last two he slept more and ate less. It really bothered me. And so it's been confirmed, there will be bad days. But we're not alone. I've been hooking up with other PWS moms on the net and after learning their stories I think "Oh my God, how do they survive?". It's strange because we are in the same boat but it still seems unreal.

While at the NICU we got to know many nurses pretty well. They are such a strong, caring and dedicated bunch at Englewood. We learned the story of one nurse who lost her 3 year old daughter to cancer. It happened over 10 years ago but you could tell she still missed her, and she was so happy to have had her even for that little while. The son of one of the doctors that treated Evan was also a patient at the hospital for many months. One day he couldn't walk anymore. It turned out he had a bone infection. She didn't know if he would survive. And there are many, many more stories like this. And they gave us much needed strength and now getting to know families affected by PWS continue to give us strength. And saying to ourselves "it can always be worse" helps too.

A month ago people would tell us all sorts of things like "you have to pray and believe in God" or "you have to find out what it is that you should learn from all of this" (who says that?) to which I remember saying (in my head) I don't want to fu**ing learn anything!!! I just want my baby to be ok". But now I know that this above anything else in my life will finally teach me PATIENCE. And Evan, baby, you have brought some hardcore harmony to our lives. You really are Godsend.

Besides all of that, I have to mention that Andres didn't once stop talking during our appointment, not even for 10 seconds, I swear! He asked Dr. Sherbany question after question and repeated over and over that he wanted to be a doctor. Sherbany and I just had to tune him out and concentrate hard on what the other was saying. So here are some pics of Andres in his doctor outfit; you can tell he already takes his job very seriously.

It Must be Said

I'm pretty tired of people saying, "Wow he's hairy". It never bothered me before but I guess since I'm hearing it for the second time around it's getting old. So let's not keep pointing out the obvious people, please. I aint mad at cha, (love that song) and I'm not taking down names but let's give it a rest ok?

"Someones's in Trouble!"

Andrés is obsessed with adventure. We went to the mall today, a rarity for us, and every time he heard a crying baby he said "Oh no. Someone's in trouble!" and "They're stuck, I have to help them." We really should look into buying him a cape and indulge his sense of imagination. He also found our tennis rackets on Friday. They were hidden in our closet and hadn't seen the light of day since summer of 2006, when I was pregnant with him. So now he's into yet another sport. And finally I have to write that I couldn't bribe him to eat even one bite of chicken tenders. I promised chocolate cake and everything and still no bite. He is amazingly stubborn!

Evan smiled at Dave today, and held it for a while. He looked so cute. He's doing great overall, and we really hope he keeps it up. He loves getting a bath and cries when we lift him out of his little tub. He also sometimes cries when I put him down. I was worried that we'd have to set an alarm for his feeds but we haven't had to, he cries every 2 to 4 hours to eat. And he smells so good, I don't know if it's because he's formula fed but he has that great baby smell that I missed out on the first time...not that you smelled bad Andrés.

But we have something else to worry about now and that is that we don't qualify for fully state funded early intervention, we have to pay $45/hour for his therapies. For the next 5 months he was recommended to receive 45 minutes of physical therapy twice a week. Then at 6 months he's to start occupational therapy, and later, most likely, speech therapy. When you add the cost of a nanny is it even worth it for me to work? God, if we could just win the Mega. I never play but since my OB-GYN told me I should play I did so last Thursday. But of course, no cigar. I couldn't believe it when he told me that Evan was the only baby he'd delivered with Prader Willi Syndrome. He's been doing this for 30 plus years. He's probably delivered thousands of babies.

We have a few doctor appointments coming up in the next few weeks. The first is with the neurologist. It will probably be the last time we see Dr. Sherbany since Evan doesn't need to continue seeing a nerologist but still I'm hoping he sees significant improvement in Evan's suck and tone. His opinion is the one that matters the most to me. He's so smart and intuitive and gives it to you straight so let's see. The next appointment is with the genetecist who's going to test Dave and I for our future probibility of having another baby with PWS. We have tons of questions for her. Let's see how it goes.

Out and About

Check out our new stroller. We love it! We went to Governor's Island two weeks ago and had a great time there. Then this Saturday we went to Lincoln Center to see an outdoor puppet show. Andres liked the show but it was too hot afterward to walk around the city.

Next Saturday we're going to take a look at a house for rent, it's time to find a bigger place. If we have luck renting ours and find one that we like then north we go!