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!

"I Love Your Smile"

If I had this track by Shanice I'd play it for Evan who smiled for me today, a month and a day after he was born!! I was sweet talking him and he was staring when he started to try to smile. Up went the right corner a few times then the left and then both nice and wide. He looked so happy which gives me so much to look forward to. Your Grandma was there to snap a photo with her phone. Maybe tomorrow we'll get some pics with daddy's camera.

Look Mom No Feeding Tube!!!

Both of our boys are taking us by surprise. First Evan has been doing so well with taking his feeds on his own that his feeding tube was removed two days ago. He's now 6lbs 13oz, almost a full pound above his birth weight. He's also crying louder, and spending much more time awake. All good things. But best of all, he's now home with us!!

Andres is already an amazing big brother. He wants to share all of his toys and food with Evan and he wants him to watch his shows with him. He's already told him that he loves him, completely unprompted by the way. Our hearts are melting.