Toy Story 3

My post frequency is starting to boil down to once per month, which I suppose is representative of schedule, of summertime commitments, etc. Speaking of summer, there are usually a few good kids movies released over the summer months. We're now on Toy Story 3 and Shrek 3, I probably saw the the first versions of those movies in the theater with my younger sisters.


In any case, yesterday Jaxson had a very late nap. He didn't wake up until 5:45 pm, when he would normally wake up at 3:30 or so! I figured I would have a wide awake child until around 11 pm. Eek, I'm used to having him in bed by 8:30 which allows me to do house stuff, go back to work (I work from home), or maybe just maybe read a book. My time essentially.


I've been wanting Jaxson to experience the movies for a few months. He's not interested that in TV, much more into books and being outside, but I thought the lure of the big screen would be appealing! I loved going as a kid and into adulthood but can't even tell you the last movie I saw. So partly for selfish reasons, I thought even if I have to sit through numerous kids movies, it would be nice to go again. So, with a few hours to kill before the 11 pm bedtime, I took a chance on Toy Story 3. It was 6:50 pm when I had this brilliant idea, the movie started at 7:25 (15 minute drive from the house) and we hadn't eaten dinner yet. My parenting skills may be questioned here, but I put some turkey and cheese in a baggy, put on our shoes and away we went!


From the moment we got into the ticket line, I could tell Jaxson was going to dig this. He stood beside me, me holding his little hand and him with a big smile and big eyes looking around at everything. The movie posters, bright lights, the teens hanging out everywhere...just the right amount of chaos and it was all new for him. Then with our popcorn in hand, we got in line to go into the theater. I could hear the 'ah's' from the people behind us and I smiled big. I thought how many other milestones we have to look forward to and savor.


I gave Jax his ticket to hand to the ticket taker and there was a confused pause as to what he was supposed to do with this piece of paper. I explained, Jax obliged and then there were some more 'ah's' from the folks behind us. Me, the proud parent announced, "it's his first movie!" More ah's.


So, off we went into the theater to pick our seats. I was placing bets with myself on how far we would get into the movie before he wanted to leave. He watches about 5-10 minutes of any TV show/movie before he's bored and onto the next thing. I figured I had a good 15-20 minutes maybe. Well, I am happy to report he made it through the entire movie loving every second of it and me loving every second too. We talked about various things that happened in the movie on the car ride home, when we got home, and when he woke up this morning. I'm sure this will be a fun topic for days to come!

Not the best picture, but I will cherish it!  This whole experience has me excited for what's next for him and how many of these milestones Barry and I get to be a part of before Jax goes off to college!


I hope everyone has a safe, fun and happy July 4th weekend!

Flashback

Ok, I know it's been way too long since I have posted. I find myself busier than usual for me and blogging has fallen down on the priority scale several notches. I'm more likely these days to post something on Facebook than write a blog post, mostly because it's quicker. Then I realized, that my blog post does not have to be long, well thought out or deeply poetic...I can just write.

So, here goes. I had a flashback this morning and not the kind my parents have about the 70s. This one was of me getting away from the NICU to do laundry at my cousin Lynda's house during our stay in Philly. Jaxson was probably 3 weeks old and I did not feel like doing his laundry in the hospital that day. As I loaded the washing machine, I remember thinking how cute his little clothes were, how amazing they smelled and how weird it was to be doing laundry at someone else's house, while my son lay in a NICU crib. We were not at our house, in our laundry room with a newborn upstairs.

In that moment I became pretty angry. All of the feelings about why me, why my son, why CDH just crashed down. I let myself get upset, which was something I didn't want to exhibit while at the hospital. I wanted to be the strong mommy, there for her son, not afraid. And then just as quickly as the anger had hit me, the feelings went away and I was fine. I folded the few onesies, button down jammies and blankets that we had for him and made the drive back to the NICU to be with Jaxson. I felt better, but still wanted to be home with my son.

That time seems so far away now. Jaxson will turn two next week and when I look at him today I see an amazingly healthy, boisterous, curious little boy growing in leaps in bounds right before my eyes. He says three words in a row now and he gets a little air when he jumps. And I'm not angry anymore about why me, why my son, why CDH. It's a journey we were handed for a reason. Reason being to share our story, to help other families dealing with CDH and to be the best parents we can be to Jaxson.

A Snow-filled Winter

Winter in Pittsburgh is usually cold and somewhat snowy, but this year it's been excessive as the snow has hit so many parts of the East Coast and Midwest. Jaxson has loved seeing the snow and saying 'snow' and cold although we haven't taken him out in it much. I am probably being overly cautious, but we've been so lucky at how healthy and cold-free he's been, I really don't want to push our luck.

His vocab is increasing at such an alarming rate...he heard me say step stool yesterday and he's been walking around saying it ever since. He can say some pretty complex words including chocolate...much to our chagrin! And on Friday he had his 21 month check up and I mentioned in the car along the way that we were heading to see Dr. Leslie and wouldn't you know he started saying Doctor Leslie. Typing these words does not do them justice, the way he says them is just awesome, precious really!

So, I'm happy to report that he is at the 15% percentile for weight. He's never gotten over 10th, so we are happy about that! He's in the 50th for height.

We started going to a new kids gym last week and it's been great for him. He loves to climb, jump, socialize with the other kids, etc. He climbed on the rock wall today and you would think he's been doing it all his life. The folks at the gym were quite shocked at his development level for his age. We have him in the 2 year old class and he can pretty much hold his own with them.

We've had a few fun visits this month - cousin Lynda stopped by the first week of February to see Jax (although Barry and I were in Cabo at the time so we missed her), Perry jetted in from Seattle for a quick visit over Valentine's weekend, and my dad (or Pop Pop as Jax refers to him) stopped by for a few hours in between business meetings.

I'm sure there is much more to report on, but overall he's doing great and we are so blessed and thankful. Also, if you're interested Jaxson's Jog 2010 will be held on May 22 at North Park in Allison Park, PA. All the latest info is online at www.jaxsonsjog.com or you can join our Facebook page at www.facebook.com/jaxsonsjog.

Please keep all of the CDH babies on the way and in the NICU in your thoughts/prayers.

It's 2010 and still so many people don't know what CDH is

It's been quite a while since my last post. I think about posting often, but rarely feel I have anything interesting enough to share with the CDH world. I try to stay current with all of the many CDH families I follow. Hundreds of families in fact. By following their stories, I'm still a part of the CDH community somehow. Reading about the struggle, the heartache and the all too many CDH warriors that have earned wings this year, it's hard to write about how our CDHer is defying his odds, his less than 50% chance of survival odds.

Our son was diagnosed with CDH at 20 weeks. We were given bleak if any hope that he would survive the third trimester. Everything that was supposed to be "down" below his diaphragm was up in the chest...how in the world could that be? It was as if I was stuck in some weird sci-fi movie. I kept telling myself, "this is a dream." We were being prepared by our medical professionals for the worst, for the death of our son. It was opposite of what was supposed to be happening. They were supposed to be preparing us for birth, the choice between meds/no meds and talking about 10 fingers, 10 toes, etc. We were supposed to be sharing our ultrasound images with family and talking about that little fuzz being hair and wondering if he would have my eyes and Barry's chin. But instead we were explaining to family members where the organs were on the image and how this was not a normal picture. It was not a dream, it was happening and we had to get on board and make decisions that ultimately I believe saved our son's life.

This was 2 years ago now and it seems like 10 years ago. It was so raw, so real at the time. I remember crying privately a lot but putting on a brave face in public. I remember looking at books that chronicled the development of a fetus and getting so mad that there wasn't a book like this for CDH parents with images of what their child looked like, organs out of place but happily floating around in uterine bliss.

We are ok, we lived this ordeal and our son survived it. He is a living breathing miracle walking around for everyone to see. I am never going to be able to say thank you enough for my miracle and I'm blessed to have a miracle in my lifetime.

Now to the future of CDH...what I see is a world where all CDH parents have a support system, education, resources, and tools to make the best decisions about care. I see a world where research for CDH is happening all over the world not just in select hospitals. I see a world where my son doesn't share a scare with thousands of other CDHers. I see a world where CDH is synonymous with Cystic Fibrosis, with Spina Bifida, with Leukemia. I see a world where CDH doesn't happen anymore because we identify the root cause.

I know there are many CDH parents out there that are making a difference. Many of them have lost babies and many have survivors, but regardless they are committed to changing the face of CDH. The CDH community can work together to make this happen and I hope 2010 a year of real change for CDH.