Saturday, October 19, 2013

Back to SF

Today our little family of three went back to San Francisco for the first time since we left the NICU last October to finally come home after 3 unexpected months of living in the hospital there. I was both really excited and anxious about visiting my former "home."

Every year in October UCSF hosts a reunion for all kids who spent time in the intensive care nurseries there. The nurses encouraged me to go last year while Evan was still in the NICU to see that life was normal after the NICU. Sure enough it's true that children grow up and whether or not they have life-long complications they manage to move on and live normal lives. This year we were part of that "normal" and boy did it feel good. We saw a few friends and former nurses. They obviously didn't recognize Evan...

...but they did recognize me and we were able to catch up on how he's been doing over the past year. There was also food and games and costumes and pumpkins.

After the reunion we decided to make the most of our time in SF by taking Evan to the beach for the first time. The sand was a bit rocky and the water was like ice but he got the idea: Eat sand and crawl in the sand to get it up your shirt and down your diaper.

Yep, that's a handful of his mouth...and I didn't stop it.

Hey ladies, how you doin'?
We also just had to take some classic Golden Gate Bridge pictures:

And just to prove Evan isn't only obsessed with his mommy...

Isaiah gets the short end of the stick with pictures with Evan for one main reason: Isaiah takes better pictures than I do.

Thursday, October 10, 2013

Evan turns One!

There was a cake.

There were presents.

There were party hats and one balloon and a one dollar bill.

 There was a slight bit of fear.

And just a moment of hesitation until...

He learned how to eat cake like it was his job.

Happy Birthday Evan!

I had a lot of fun making Evan's cake. I used multiple cakes as my inspiration for it but I simplified them to my amateur ability level. Eventually there will be a link here to a little tutorial. 

We didn't mean for Evan to have so many presents. I really didn't think my child would be one of those know, the ones who are spoiled with so many toys that they don't even know how to play with them all. So much for that. But actually a lot of his presents were things we were going to get him anyway like long pants, long shirts, sippy cups, bowls...that kind of stuff. We spaced out the present opening during the day so he wouldn't get worn out. He was really good at unwrapping until we put on our party hats at night. He got really distracted by the four adults staring at him with strange things on our heads.

Evan loved his first experience with a balloon. People with spina bifida are more likely to develop a latex allergy so it's recommended we keep him away from all latex things...which means no latex balloons. (Not like infants should be playing with balloons anyway) Mylar balloons are safe but they're much more expensive so we just got one. He loved hitting it and shaking the string to make the balloon go up and down.

We didn't do much to celebrate during the day--just our routine speech therapy and playing with toys. I wanted to take him to the Python Ron reptile show at the library but he was sleeping so I left him with his daddy and went by myself. There was a bird-eating spider and several lizards and snakes. He even had a green anaconda that was several feet long.

Happy birthday Evan!

Friday, October 4, 2013

Punkin Patch

Last year Grandma Hudson tried to bring Evan a pumpkin in the NICU and they didn't allow it so he didn't get a pumpkin. Every day when I was shuttled to the family house from the hospital we passed by a pumpkin patch. I saw all the families going in and picking their perfect pumpkin to carve and I wanted so badly to just be a normal family going to the pumpkin patch to celebrate a normal Halloween. I hated the NICU.

It was like a year-long dream come true tonight as Evan, Isaiah, and I picked our perfect pumpkins at this ginormous pumpkin patch in Dixon, CA, home of the world's largest corn maze. It really was big. Really big. I loved every blustery second of it.

A Voice

Although I love NBC's "The Voice", that's sadly not what I'm blogging about today. Maybe another day.

It's Spina Bifida Awareness month!! Isn't it nice that Evan was born this month? Now I've always had a voice (and opinions to go with it--just ask my husband) but Evan has given me the unexpected gift over this last year of feeling like what I have to say is important. I've developed an eagerness to share our experiences and feelings in order to bring about that all-important AWARENESS. My hopes are so high, I can't even begin to describe how big my goals have become to do great things and be a better person.

I was so flattered recently when I received a special request from a stranger who read my blog. I never before thought of strangers reading my blog but I've actually had a few people reach out to network and connect with me. Heather has an important message and story. She invited me to share her voice on my blog and I'm happy to do so in the spirit of this month of awareness.

Heather's Story: I am a wife, mother, and a mesothelioma survivor. When my daughter was 3 ½ months old, I was diagnosed with this rare and deadly cancer, and given 15 months to live.  My prognosis was grim but I knew that I needed to beat the odds for my newborn daughter, Lily.  It’s been 7 years now and I feel that it is my duty to pay it forward and inspire others.
I clung on to hope throughout my whole journey with mesothelioma. When you have hope, it makes the battle easier.  I want people to be inspired by me, I want to make them fight; give them something to hold on to when all else fails. That is why I do it.  If I inspire one person, I've done my job.
I'm using my personal story to help raise awareness of this little known cancer, and to provide a sense of hope for others facing life’s difficult challenges.
Here is a video of my story that I am hoping to use as a tool to raise awarenessClick Here to see Heather's Video

I'm so inspired by awesome people. I want to meet all the awesome people in the world and learn all of their stories and tell everyone else about how awesome everyone else is. Thanks, Heather, for letting me share.
I also know someone else who is starting to share his voice...Evan just started speech therapy two weeks ago and he's doing great! If you asked me beforehand what I thought about an 11-month old in speech therapy I would have said, "There's nothing they can do that I'm not already doing at home. 11-month-olds aren't supposed to talk yet anyway so it's not gonna help." If you asked me shortly after our first therapy session how it went I would have said, "I didn't realize I've been talking to my son so poorly for the last 11 months. No wonder he's struggling." After I processed the experience and thought about it for a while I would now say, "Speech therapy is awesome for supplementing my infant talk for children who process speech differently." Evan just needs extra help to learn some things and I'm super grateful to be given all of the resources we have to learn how to do this.
So what does an 11-month old do for speech therapy? Right now we're working on mimicking gestures. Beginning speech is really just copying and experimenting with vocalizations and in order to learn how to copy speech he'll first need to learn how to copy anything. We're starting with big things like clapping or pat-a-cake. Then we'll move to fine motor movements and then to sounds. I'm also learning to simplify and repeat my talk during routines to teach basic words. The therapist also has this vibrating stick thing she puts in Evan's mouth to stimulate it. He likes it. I'm confident we'll have a little chatterbox on our hands in no time!
In June, at 8 months old, Evan couldn't roll over, crawl, sit up, bear weight on his legs, self-feed. Now, just 4 months later he's mastered rolling and he loves eating little finger foods. He can sit up independently and then move from sitting into crawling position. He can crawl around rooms and crawl to toys he likes (though he frequently just crawls straight to mama). He will sometimes even bear weight for a second or two, which is actually a big deal to us. I never thought I'd see the day, but sometimes he even entertains himself for a few minutes. Woohoo! Free time for mommy! It's crazy to see how, even though it's been at his own pace, he's learned how to do everything he should be learning. And he has a goofy smile and a silly personality and he makes me laugh and just love bein' a mom.

Happy Spina Bifida Awareness month!

Mmm...leg rolls