Becky's Magic Cookies

I really don't know what Becky puts in those cookies...some kind of fairy dust! Lily had a quick ER visit yesterday...minor, and quickly resolved. But when we got home, we were gifted some of Becky's famous homemade chocolate chip cookies. Today, Lily ate TWO on her own!!!  It's amazing!! I've even tried store bought chocolate chip cookies---to no avail. Regardless of where she gets the magic, it sure makes for a lot of smiles in our house!!! I would give you the recipe, but I'm pretty sure occupational therapists all over Washington will start paying top dollar for those cookies, and I wouldn't want to interfere with Becky's ever-growing delectable empire!!!

Go RML!!!

A huge thank you to Angela, Grandma, Addie, Dynette, and Chris at RML for buying t-shirts and supporting us!!! Most of you have never even met Lily, so it shows how huge your hearts are!!! 

Team Lily Photos

Reminder: if you got a Team Lily shirt, please send me a photo of you in it if you haven't already!!

Bradley Lake

Erased

Lily has stopped feeding herself. This is not unusual to work so hard on a skill, to do it a thousand times before her little brain can process it. Then, she learns it. Then, she loses it. And we start the skill over, but sometimes with more memory--and sometimes not.  This is where being a warrior of this disease kicks in. We just have to continue having her use her hand while eating, putting food in her hand, and try to keep this skill a memory somewhere in her brain. It makes you want to scream as she spends hours a day working so hard on a skill and to be filled with such amazement only to have it washed away by seizures, by medications, by tumors.  It's like climbing a mountain and almost reaching the top a hundred times and just when you're about out of oxygen and you're 10 paces from the summit...a wind comes and knocks you 10,000 feet--back to the base. This is where you get back up. You get back up mad and full of fighting fury. You focus on the goal and you push hard. And you do this because you know all is not lost and there is always hope, and because you believe we will reach the summit. So pick up your gear; we're headed back up the mountain.

Hanging Out At Target

Silly girl had fun doing some shopping!!

Still Moving Along

Lily is still doing so great! She's still mastering feeding herself!! She is really motivated to do it herself and we just sit as a guide and instructor while she's working on it. She loves to eat Cheerios herself (Thanks Alicia!) as they stick to her fingers and is more positively reinforcing since she more often succeeds in getting some into her mouth.  She's getting into a high knee bend and bouncing and then getting on her hands and knees. She also gets very frustrated. We can tell that she wants so much to move forward and crawl!! Seizures are down to 0-1 a day right now...we haven't seen a seizure in 4 days!!! Hooray!! Lily has a pediatrician check up and her brain MRI next week. Also, next week is her last week of school with her teacher, Ms. Sharon, and her physical therapist, Ms. Joy, (until the fall). However, I plan to continue her school and therapy through summer at the same time because I think Lily has really worked hard to sustain an hour three times a week and that she will regress if it is completely abandoned.  We'll also take some break weeks as well to celebrate all that she's done!!! GO LILY!!!

Amazing Lily Grace

Lately, we have felt like we're on a magic carpet ride.  For so very long (years), we've seen very few developmental advancements, but lately Lily is doing so well, and we are so elated.  We've had periods before where it would seem like Lily was moving forward and then we would lose it.  It's often been 3 steps forward and 2 steps back. Could this be a honeymoon? Yes. But I feel like we should just enjoy the honeymoon, live in the present, and not worry about the future now, it will be what it will be.  All that said, get on the magic carpet with us...Lily is not only getting better every day at feeding herself with her hands, she also took a spoon from me and started feeding herself with it!!! Big, happy, sparkly tears zoomed down my face!!! I couldn't believe it! She's also playing with toys (which she often avoids doing much of)...banging on her keyboard, shaking her pom pom, and pounding her drum.  Also, she has really become attached to a Woody the Cowboy doll. He has a string on the back that you pull to make him talk. As I was making her a drink, I heard him talk...I looked over and she was pulling the string over and over.  She'd never been taught how!! Later in the evening, we were watching TV together, and she started sitting on her knees and bouncing up and down like she wanted to pull herself up to her knees.  I have to pinch myself sometimes.  Is this real or some sort of wild dream? This is unheard of in our house...well that used to be true. Now, it's happening. She's going to amaze us all...do it all her own way...in her own time...that is the magic and uniqueness of Being Lily.

Step Forward to Cure TSC

Step Forward to Cure TSC

We are still raising money for the tuberous sclerosis complex walk in July in Seattle.  We are so close to our $1000.00 goal!!! I want to thank Mom, Beverly, Alicia, Mary Ann, Don, Deidra, Lisa, Beth, Kari, and Custom Ink Designs for your donations!!! Tuberous sclerosis is a rare disease and so it is often underfunded, but curing TSC could cure cancer, autism, pkd, and so many other diseases. Thank you to all of you!! If you haven't donated, but would like to, please click the link above and donate for Lilliana Brewster! Thank you!!!