Tuesday, July 1, 2014


We just got back from our vacation to the CdLS National Conference in California and I know I didn't post a lot about going or at all while we were there but I don't want you to think for a MOMENT that we weren't crazy excited about being there and incredibly thankful to everyone who made this trip possible.. I think we live in a fairly safe place, but I must be a little old school and just kept picturing that commercial where the lady posts on Facebook about going to Hawaii and the burglar cynically comments "Have a nice trip.." It makes me laugh every time, even though if someone actually tried to break into our house while we were gone, they would soon realize that the joke would totally have been on them - they would pretty quickly realize that we have pretty much nothing of value for them to take. They probably would have felt bad for us and instead of robbing us would have ended up leaving us something from their previous raid out of pure villain sympathy.. after looking at my 'vintage' computer- "Here lady.. take this new MacBook. It looks like you could use it a lot more than we can.." 

Thanks to a very generous donation of 'fun money only' from some wonderful friends we were able to do a lot of extras in California we weren't planning on doing. 

We left early Monday morning-as in we had to wake the kids up at 4am to get to the airport in time- you know because we heard things might get crazy with as many as 180 people there.. ;) When we were walking stumbling out to the car in the dark that morning I overheard Charlie mutter incredulousl,y "You woke us up in the middle of the night???"

First time on a plane for all these boys!

We LOVED seeing the ocean for the first time

and had such a blast just hanging out, swimming, eating at cute little restaurants on the boardwalk..
I could about pack up and move right now. It was so beautiful!

I have a feeling I could lose this one to the west coast someday.. He loved the waves.

Boogey board rental = best $5 spent on the whole trip. Except maybe the $5 rental for a luggage cart at the airport so we didn't have to haul our 8 carry-ons + 4 car seats around the entire airport by hand all afternoon on the way home.. It's a toss up.

We visited some tide pools at Little Corona Beach and while we didn't see any star fish like I was really hoping for, we did see lots of crabs and mussels and a sea urchin or two. Oh, and I totally made the boys pose here for a pic, knowing the waves were going to crash up behind them. Hee hee..

The next day we had SO much fun on a whale watching trip. 

The dolphins swam right next to the boat

and were jumping all around us!

We even saw a few whales on the beach...
Whoops! Now how did that picture get in here...

Dad, Papa, and the boys went on a fishing trip too and they had a great time! 

Oh, and Nolan even caught an octopus but you'll have to take my word for it, because really.. who would think to take a picture of your eldest son after he catches a freaking octopus in the ocean. Something about helping the other child and not feeling good and sea sick and blah blah blah.. I'm not saying I'm bitter about it, but there are SIXTEEN pictures of BIRDS from that fishing trip but the octopus? Totally nonexistent.. 

We also did Disney one day and of course CARS Land was our favorite! 
We found it pretty easy to get around in California, except for the trip to Disney, which was only supposed to be 20 minutes away, but getting on the 405, going the wrong way TWICE added an extra hour to that trip.. Good thing JJ and I stayed totally calm and encouraging toward each other the entire time. Or actually the opposite of that..  

Disney was fun, but honestly? With all the waiting and crowds and more franctic pace, 
I probably would have traded it for just another day at the beach.

And if you're starting to think, "Ummm.. didn't you guys go there for some kind Conference or something?" Why yes, yes we did. The CdLS Conference started Thursday and we got some really good information from the specialists we signed up to see. Our Speech Therapist gave us some great tips to help Ella develop more words and said she has studied many children with CdLS and believes Ella will not only say her name, but be able to spell and read as well. The Developmental Pediatrician helped us troubleshoot some challenging behaviors we've had lately with Ella (such as casually walking past Hudson and giving him the V-8 slap to the forehead and knocking him over..). Our Special Education Teacher helped give us some tips on starting our IEP and getting into the school system and reassured me that it's okay if she doesn't start school at age 3 like many other children do. We also made a bonus visit to a GI Specialist as well who was able to give me some much needed reassurance that even though 90% of kids with CdLS have some kind of reflux, if Ella isn't having any symptoms, we really don't need to scope her to check. (Something I worry about a lot since I know it's recommended so future damage isn't caused, but something our GI didn't want to do without symptoms since it's fairly invasive) We were also able to attend some workshops on Medical Research, Financial Planning for your child's future, hear from adults with CdLS on their daily lives (even one who is graduating college this year with a 4.0!), connect in a small group of moms with children the same ages and share the challenges we have faced with understanding the diagnosis (and dads had the same opportunity as well). 

I don't have as many pictures as I hoped since my camera wasn't working all the time after someone (not naming any names.. JJ) spilled water all over it our first night in California, but here are a few of Ella's friends from our Banquet Saturday night. 

Ella was tearing it up on the dance floor

and trying to give her boyfriend a hug. He's kidnof a ladies man..

We were squatted down trying to take pictures of these two, so of course they squatted down too. So cute!!

We had a great time reconnecting with old friends and meeting new ones.

And I'm so so thankful we were able to bring all the kids along, because they made some really good friends as well. 

This is so important to me because I know as they get older they might go through a time where they struggle with having a sister who has special needs, something I don't know anything about. I know if they have someone to talk to, or just someone who understands, that will help so much.

Seeing them interact with kids who look different from them was so touching. To watch them play tag with a little boy who was using a walker and include him in their game was priceless. 

Charlie tagged along with this guy at the Banquet Saturday night and ran around collecting money "for CdLS kids" and actually ended up raising $70.17 to donate to the Foundation! Sometimes I worry about how having Ella as a sister will affect the boys as they grow up, but this just proves to me that the compassion these kids are witnessing will have a far lasting impact on their lives.

There were so many times throughout the week where I would just look around and be so overwhelmed with gratitude for all the people that made it possible for us to be there. While I watched the kids splash in the ocean, my eyes filled with tears and again when I looked around the hotel lobby and saw all the CdLS kids gathering. Two years ago when we heard the next CdLS Conference would be in California it seemed like a very distant dream that we would be able to go. We cannot thank every single person enough who helped us get there. It was an unforgettable experience and our family is just so thankful for every one of you!!

Despite everyone being exhausted and not getting home until almost midnight, (oh-and the whole TSA pat down for yours truly. Did you know Desitin causes you to test positive for bomb residue? Makes you feel good about what you're putting on your baby's bum, doesn't it?) the flight home went pretty well. The boys were their usual kind selves.

Poor Papa..

Aaaaand so far since we've been home we've had another baby bat in our kitchen, goats and sheep out in our front yard, tornado warnings and hail to wake up to, and an almost completely grasshopper eaten garden. Ahhhh... there's no place like home. If only Nebraska and Southern California weren't so far away.

Looking forward to Orlando 2016 already!!

*Special THANK YOU to Grandma and Papa for coming along with us and helping SO MUCH in California. You helped make our trip go so much smoother and the kids had so much fun with you.
We appreciate it so much!!