Tuesday, September 11, 2012

Summer is 4!

Yesterday was Summer's 4th birthday and it was sure a busy day! First day of preschool, first day back at ballet, and a birthday dinner at her favorite restaurant - Red Robin. Four years old already, I just can't believe it!

I was thinking back on past birthdays, especially her 2nd, when she was fresh out of her second brain surgery and had just started Interferon treatment, and I am so grateful for where we are now!

Summer is doing really well. We've been making some adjustments with her growth hormone treatment, but other than that there's not much to report! She is definitely becoming more curious about what has happened to her, and asks questions about it all the time. Trying to explain some of these things in preschool terms is pretty challenging, and she puts me to the test on a daily basis. Here's a snippet of last night's conversation:

Sum: "Mom, why do I have to have poke (what we call her shots)? I don't like it and you don't like it. Next time we see the doctor you should just tell her we don't want to do it anymore."

Me: "I wish we didn't have to, but you need that medicine to help you grow big and strong. It's something we have to do even though we don't like it."

Sum: "No, mom. Eating good food makes me grow big and strong. I don't need poke."

Me: *excited that she actually knows this because she doesn't eat like she does..."Yes, you need food too, but your body is...extra special...and it needs the medicine from poke to help the food make you big and strong..."

...and the back as forth continued for another 5 minutes. I think she just eventually got tired of listening to me and gave up.

I don't think I ever really expanded much here on her neuropsychology evaluation, so here's a quick summary: It was nice to hear that she has caught up to her age group on motor skills, since those were behind on her last evaluation, probably the result of vision problems prior to diagnosis and treatment. She's very advanced verbally, and a bit on the short-tempered side for her age. Those who know her well know there's nothing in those words that surprise us! :)

Summer's next MRI and round of follow up appointments are coming up on the 26th. We also have the Run of Hope on the 30th and we'd love it if you'd join us! We have raised well over $5,000 each year for the last two years, but we're a little behind the game this year. If you can join us in supporting this great cause, please do so here. Donations will of course be accepted until the day of the event, but if we reach $2,500 (or receive an individual donation of $1,000) in the next two days, Summer can be listed as an event Angel again, with her name on the t-shirts. Here's the link to donate.

Happy birthday to the smartest, funniest, strongest, most spirited and beautiful girl I know!


  1. Hey, Jessica, I just donated - but didn't see your name anywhere... I hope you guys get credited. :)

    1. Thank you Courtney! It did work, I just got the email. Thanks so much for your donation!

  2. Glad to hear it! It was such a moving experience last year. Thanks for letting me be a part of it.