The Driver's Seat

I'd be remissed to not start with the amazing event that took place yesterday. When I set up our team back in June for Al's Run, I had hopes of getting at least 10 people to join the team so that we could have our own team t-shirt. $1000 was my fundraising goal. I never imagined the support and love we would find in people. And I'm not just talking close friends or family. I had grade school friends, high school friends, people I went to college with, friends of friends and the list goes on of people that made a contribution to Kellan's team. Family and neighbors that raised hundreds of dollars just on their own. The crazy world of Facebook brought out the very best in people. People I probably wouldn't still be in touch with if it wasn't for that little website amazed me almost daily with donations.

By the end of the day yesterday, Team Kellan raised...drum roll please....TEN THOUSAND DOLLARS. Incredible. Check out Team Kellan right before the walk!

 

It gives me goosebumps to see how many supporters Kellan has that were there with us and the several others that were with us in spirit that day. I feel like a broken record, but thank you to everyone that was somehow a part of the day. Brett and I have done Al's for several years now. As I walked last year pregnant with Kellan, I never imagined that we'd be participating this year in honor of our little bug, but I am proud. Of course Kellan was the little trooper he always is.

Kellan is such a big deal, he had a mascot. Yep, this little bug made Kellan feel like he was at the opening ceremonies of the Olympics! Carried the entire way by two great friends Shay and Amy, who were also the creators of him. Thank you both!

A picture of our little family...

In other news, we had Kellan's follow up appointment to decide on a feeding tube. Truth be told, after the initial shock wore off that a feeding tube is something that may be in Kellan's future, Brett and I actually started liking the idea of him having one. Kellan is still such a stinker at night with waking up. We struggle to let him cry it out and leave him in his bed because we manage to sneak in a few extra ounces when he does wake up. We also realize a tube would take away the anxious feeling we get every night when it is getting close to his bed time and he is far behind on the amount of food he needs for the day. All that being said, even though Kellan rarely eats the amount of ounces he is supposed to, he managed to gain the exact amount of weight he was supposed to in the 6 weeks since we had seen Dr. Noe. YAY Kellan! We are following up again in December and Dr. Noe did say there is still a pretty good chance he will need one eventually. Let's hope the little man continues to grow and eat on his own!

We also met with a Speech Therapist who specializes in feeding. She didn't have any different recommendations on how to feed him a bottle, but she gave us some great ideas for getting him to eat cereal better. He's been doing great with that and I'm confident is one of the main reasons for our little guy to finally actually have some chubby baby thighs. And, depending how he is looking you may even see a double chin once and a while. :)

There are quite a few other changes happening in Kellan's life too. We recently made a switch with his physical therapist and man do we love her. In the 3 weeks he has seen her, I can tell a drastic difference in how strong he feels. We continue to work on him rolling over from his back to his stomach...he is SO close. Our goal is to have him doing it by Halloween. I know he can do it! We are also working very hard on getting him to sit up and build his core muscles. He is doing a great job! Chris, the therapist is awesome with Kellan. She sings to him, has the best old school toys for him to play with and kisses and loves him like she has known him forever! We are lucky to have found her.

I also was able to negotiate with my great and understanding employer to work from home one day a week. This past week was my first week with the new schedule. It was a little hectic trying to answer emails plus we had an appointment at Children's that day, but knowing I get to be with him a whole extra day is a great feeling. This week we are also starting Kellan at a new day care. The structure they can provide and the kids that will surround him the days he is there makes us very excited to see what Kellan will show us he can learn next.

And lastly, but not certainly not least, I wanted to thank a great group of women I have found recently. As I was perusing the Al's Run website watching Kellan on the leader board, I found a new team that snuck on to the leader board with us. As I did with all the others, I was quick to read the story to find out what special little kid was going to be honored at Al's run along with Kellan. As I sat reading her story, it felt as though I was reading my own life. An adorable little girl, Lydia with one of the strongest moms I've ever met, Sally. I found Sally on Facebook, added her as a friend, she instantly invited me to come out for dinner and drinks with a group of Special Needs moms and I jumped at the opportunity. These women are amazing. They welcomed me with open arms and it was the greatest feeling in the world. The support I felt from them was different than any I have received since Kellan's diagnosis. These women live it everyday and they make it look easy. Thank you to each and everyone one of you that I met and am now connected with. You are an inspiration to me and the love and support I feel from you even after meeting one night is the best.

After that night, I also found a mom in California that has a little girl that is 3.5 years old that has almost the exact deletion as Kellan. After connecting with her, I gained some hope when I learned about her beautiful little girl, Addi. Addi learned to walk at 2 and started talking like crazy once she got to school when she turned 3. The best piece of advice I got that I already knew but needed the reminder from someone that lives in the shoes was to not compare Kellan to anyone. Kellan is Kellan. Though I haven't met Addi's mom, I can tell her strenght in just talking over email. Thank you Cristian for finding me!

Well, I think I am now up to date. One last picture of our little man, chilling in the drivers seat. Such a fitting place for him to be :)