Summer

Paige Patrol Thanks! And other things!

by Andrew Barbour

We have a few updates to discuss since the last time we posted on here, but first and foremost, Stephanie and I wanted to thank everyone, from the bottom of our hearts, who helped us out with our Paige Patrol fundraiser. I am truly humbled, and honestly shocked, at the number of t-shirt purchases and donations that we received. Your outpouring of support means the world to Stephanie and I. There aren’t any words I can use to express our gratitude to everyone, but please know how much your generosity means to my family.

It’s funny, because to be honest, I was kind of a stick in the mud about the whole thing. I remember very clearly saying to Steph “there’s no way in hell 100 people are going to buy these stupid t-shirts” (the way this thing works is, you have to achieve a minimum number of purchases before you receive your donations). Well, turns out I was 100% wrong, as the goal was exceeded within 24 hours of Steph starting the whole thing up. I am still awe-stricken by the amount of support we’ve received throughout our journey, and specifically with regards to this fundraiser.

As I’m sure you can imagine, having a special needs child is not cheap. I have a good job, pretty good health insurance and all the support you could ask for from family and friends, but there are certain things that wouldn’t have been possible without the support from you folks. Steph has done a lot of research on “alternative” therapies and special needs programs, pre-schools, camps, etc., and they are all incredibly expensive. Steph found one school in particular that’s very close to our house, and actually ended up meeting with some people who had sent their special needs children there. We heard nothing but rave reviews, and stories about children that went through this school and ended up able to do things their doctors never thought possible. I’m not going to give you a specific dollar figure, but let’s just say that it wouldn’t have been possible to send her to this school without the proceeds from the Paige Patrol fundraiser.

Because of the generous donations from you Paige Patrol folks, we were able to enroll her in this special needs “camp” at the school right by our house. After a lot of research and asking around, we decided this program would be a good addition to her normal regiment of weekly therapies. I’ll leave the specifics of what exactly they do to Steph when she has time to post about it, but it essentially revolves around muscle memory since Paige’s brain can’t tell her how to do things we wouldn’t normally even think about, like sitting up or rolling over. Despite her limitations, Steph and I swore from day 1 we would do everything in our power to get her little brain and body functioning at their maximum capacity. And we think the work they do with her at this school is going to help her to continue to thrive and excel beyond everyone’s wildest imagination.

On Sunday, June 7th, Paige celebrated her 2nd birthday. This wouldn’t be anything more than balloons and birthday cake for a “normal” 2 year old, but for Paige, every birthday is a milestone. Being that a lot of liss kids don’t even make it to 2 years old, we are honestly lucky that she is doing as well as she is, and thriving at that. We had a party with our family and friends on our deck that weekend, and it was a perfect day to celebrate her. As a result of everything we’ve been through as a family, we don’t take anything for granted, and have learned to appreciate every chance we have to make a memory with her. Her party that day was certainly something we will always cherish in our hearts.

Our summer is going to be crazy, in a good/busy kind of way. We have something on the calendar almost every day of the month through July, from Will’s soccer to Paige’s special needs camp and everything in between. It’s good, because I think as a family, we’re starting to develop a sense of “normal” after so many unknowns over the last year. Steph and I are realistic about what the future holds for Paige and our family, but that doesn’t stop us from appreciating all of the good things we’re experiencing now.

And thanks, one final time, to those of you who contributed to the Paige Patrol fundraiser. We will always be thankful for your generosity and all the good it is doing for Paige.

Pictures from the park, our home, a Pittsburgh Pirate game, Paige’s 2nd Birthday, and Conductive Ed!

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Milestones, Summer Recap, and Pics!

It’s the middle of August and can’t believe summer is almost over!  I have to admit, I am a little ready to slow down but we’ve had so much fun moving and grooving all summer that I’ll be sad when it comes to an end.  Also, at the end of this month, we will have a THREE YEAR OLD and we’re certainly having a hard time with that.  How did that even happen?!  Where did the time go?!  Didn’t I just have that little tornado of fun we call Will??

Last summer, I had an almost two year old and a newborn and I remember joyfully thinking ahead to this summer and what it would be like having two toddlers.  I envisioned them playing together, arguing over toys, sharing snacks and juice after a trip to the park, wresting them to take naps, and a huge mess in the bathtub before I got them ready for bed.  As hectic as this sounds, it was something I really looked forward to.  I actually enjoy the chaos that comes with kids and I think it’s the purest labor of love and something that makes me incredibly happy.

Fast forward to what this summer actually is.  Well, let’s see.  Things certainly are… different.  But at the same time, in many ways it’s not!  While I technically have do have two toddlers, it feels like I have one toddler and one baby.  While that sometimes makes me sad, it’s really not at all!

It’s. Just. Different.

Sure, my kids might not pass a ball back and forth or play with blocks together.  But, when I see how Will talks to Paige and the look on her face when he rolls her on the floor, I melt.  When they’re in the bath (which is one of Paige’s favorite things) she annoys Will by kicking and splashing water in his face. And, that’s their version of fighting!  When Will get feeds Paige her pureed food and tells her “Good Job!” as he wipes her mouth with a spoon, I feel like we did something right.  It might not be what I envisioned but it’s still pretty amazing.

The plus sides to our new normal are that Paige is perfectly content to hang out anywhere.  She’s good in her car seat, a stroller, my Ergo 360, a feeding chair, or on the floor… I mean it when I say ANYWHERE!  I only really have one toddler to chase around.  I still feel like I can truly give all of my attention to both at the same time.  (I know that doesn’t seem like it makes sense, but I don’t feel like I’m stretched too thin.  Um, most of the time!) I can strap Paige in her carrier and chase Will at the park.  I can do therapy with Paige and talk about shapes and numbers with Will.  Since Paige only complains when she’s hungry, I only really have one whiny kid at a time.  Since Paige is super easygoing I don’t get stressed out if she doesn’t nap like I do with Will.  At doctor’s appointments I only have to entertain one child and I don’t have to ration iPad time with two wiggly and impatient children.  We can still go out to eat as a family, travel to visit family, go to a movie, and make day trips.  We can still have fun!  We are doing everything I envisioned we would but it’s just in a different way.  It might need a few more gadgets and extra planning but we’re doing it!  We are doing it!

Another reason that we’ve been on-the-go this summer is because we can.  With Lissencephaly, you just don’t know what will happen from one day to the next.  Right now, she’s doing really well and it’s thrilling to watch everything that she does. However, we do have this little voice in our heads reminding us that one seizure or illness can change this.  One day, she might need more help, more equipment, more medicine, and more care that will make things even more difficult.  Knowing that, in a way, helps us to live more in the moment and more apt to do the things we want because, right now, we can.  You know what though?  That sentiment could go for anybody.

This summer meant a lot to me for many different reasons. It was certainly a lot different than I ever planned but it was still absolutely incredible! One of the very first things Andrew said after we got a Lissencephaly diagnosis what that it will not make our lives any worse, it will just make them different. And that is the truest thing that I’ve ever heard.

Like I said before,  Will is turning 3 and he will be going to preschool and start gymnastics in September.  Between both of those activities, I’m hoping he learns, burns some energy, and has a blast.  This will also be the first time he’s in activity where I’m not in the room. (Okay, maybe the second.  I had jury duty for a week when I was pregnant with Paige and Will had to go to a daycare for a week but I don’t really count that!)  I’m actually really excited for him and hopes that he takes turns, shares, and plays with his friends and listens to his teachers.  He’s a great kid and it’s awesome to see him grow!

As for Miss Paige, she has had a huge burst in development and we couldn’t be more thankful!  Since her birthday, four teeth have popped through, her hair is getting super fuzzy, and her motor skills are.. well.. motoring!  Paige is a thumb sucker and it’s so cute to see.  She plays with her hair to self-soothe and she is starting to reach more and play with toys.  She shook a rattle for 40 seconds and she did it purposefully!  She uses her feet as feelers, which I’m told is a bad habit, but I’m thrilled that she even has a bad habit!  Her physical therapist thinks she’s super close to sitting up but needs more trunk support but we can tell that she’s getting a lot stronger week by week.  Paige now eats 3 full 6 ounce homemade pureed meals a day and she’ll hopefully be drinking whole milk over formula soon.  She can chew bananas, pears, avocados and today she had 20+ baby puffs!  We go for an evaluation at the Children’s Institute at the end of the month to look for possible equipment Paige might need in the future to make all of our lives easier.  She’s pretty freaking amazing for doing all of this but she’d be pretty freaking amazing even if she couldn’t.  She’s a delight and we’re thankful she’s ours.

Paige has another eye appointment at the end of the month to check on a sty she has on her left eye.  Her pediatrician thinks she might need a simple surgery on her tear ducts but we won’t know until we see how the antibiotic works on it.  I’ll keep you posted and Happy End-of-Summer!

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