A few random updates

“If you find it in your heart to care for somebody else, you will have succeeded.” — Maya Angelou

We’ve made it a few days and thankfully haven’t had to return to the hospital with my baby boy. After how crazy the last week was I admit it is a huge sigh of relief to have made it past these last few days seeing him doing so much better. After his first day home we noticed his shunt was draining the fluid a bit too much from his head so we took him into the office yesterday morning to see his neurosurgeon. It only took a moment to change the programmable setting…here’s my baby boy just a moment before his shunt was adjusted. He’s been such a happy content little guy since then.

Yesterday while we waited to meet my doctor Jason and Chance spent a bit of time together. Yes, I’m the patient out in the waiting room that won’t put my camera down.

My poor husband and kids are tortured by me taking pictures constantly…yes, even in hospitals and doctor’s offices. Some of my favorite pictures have been taken in the most unexpected of places. I may drive Jason crazy with my paprazzi picture taking habits but I know when he finally gets to see these pictures he’ll be happy. You have to admit my boys look quite adorable together.

This is the first photo I’ve shared of the back of Chance’s head since his last shunt surgery. Right now seeing the back of my baby boy’s head looks a lot like he’s a cute little frankenstein baby (okay…humor helps me cope..I’m really still pretty traumatized seeing my baby boy’s head). Because his other ventricle wasn’t responding to the original shunt it was determined that he needed an additional catheter inserted into his brain to drain the other side properly. Rather than having two shunts, he has the two catheters connected to one shunt and the tubing connects like a “T” and then connects to the tubing that drains the excess fluid from his brain to his belly. I don’t like him having to need a shunt. Nor do I like the idea of him now having additional “plumbing” to make things work…but it’s what he needs to be able to function.

Chance has been stealing all the attention lately, but today I had an opportunity to capture a few moments with Jaylen. Summer semester grades are officially in and I’m on a bit of a break between semesters…though we all know I don’t really take “breaks”. I took the kids with me on a trip to campus to do a few things. Jaylen had fun running and playing “red light green light”.

I had my hands full with Chance in the bjorn so I didn’t get to take many photos…but do have a few. Hope and Jaylen played “red light green light” all the way until we got to building six. Oh,  yes, “red light green light”…it’s an awesome way to get my kids to let me take their pictures while they have a bit of fun.

Building six is so awesome to take pictures in. I love the light and the angles within the building. It was tough for me to really take many photos going up the stairs with Chance in the Bjorn. Jaylen ran up the stairs and I totally lucked out taking this photo from the hip.

Jaylen is at the perfect age…I absolutely love to photograph him lately because he’s so spontaneous and he hasn’t quite been plagued by the “cheese” smile. I wish parents would realize that saying “cheese” only gets your kid to smile “cheesy”. Though I never tell him to say cheese I have come to notice lately that he’s starting to really put an effort into smiling for photos when I take them. I can’t believe how much my baby boy has grown this year. This past week has been tough for him. He doesn’t say it in words, but he’s been a lot more whiney since we’ve been home so I can sense it’s taken a toll on him. Of course moments like these spent with him are uplifting for me to see.

While on campus we met with one of my colleagues, Josh Murdock, who’s awesome enough to join Chance’s team for the Spina Bifida Walk-n-Roll coming up in October. Back in Feb 2010 I presented to a room packed full of educators interested in listening to my thoughts on social media’s uses for educators. I recall Josh taking that course, I can’t recall how involved he was prior to my presentation but boy has he stepped up and become an inspiration to all educators. It’s quite exciting to have him team up with Chance’s team…together I have this feeling we’re going to prove just how effective social media can be to doing some good in the world. I felt it’d help to take a few photos of him with Chance to help him in helping us raise funds for Chance’s team. I have to admit it’s awesome to have so many colleagues like Josh who care so much for our family and our sweet baby boy.

Josh has always been a big supporter of my work at Valencia and my photography. He’s been known to help me with previous probono photography fundraising before…but this is something far bigger and more important than before…

Thus far Chance’s team is in the lead in raising the most funds. We’ve raised $1250 of our $10,000 goal. The Central Florida chapter has a goal of raising 50k or more in order to become an “official” chapter. The only way the chapter will become an official non-profit and be able to receive additional support form the national spina bifida association is if this 50k goals is met. I have no doubts that Josh is going to help us come closer to our goal. Of course you all are welcome to join our team too…we’d love your help in supporting my baby boy. A donation in any amount will directly support the families in central Florida affected by spina bifida.

And the last bit of randomness in this update. Today Chance began to hold his bottle on his own. Only for a few seconds…but it’s a huge milestone. It’s one of those moments where I as a mother am so proud…and a tad bit excited to see him gradually becoming a little more independent….but yes, it’s tough not to realize just how quickly all these baby moments are escaping me. I’m reminded to enjoy them all. Every last one.

Thank you all again for your care and concern for our family…the messages continue to roll in and I’ve tried so hard to respond to most but I know I’ve missed some of you. The embrace you all have sent our way is certainly heartwarming.