This Little Light of Mine

Alicia, thank you for the candle that you sent for me to light so that I can have you with me in spirit on those days when I could really use a friend. You always bring me a glimmer of hope, when all other lights go out. I love you!

9 Times A Day

Lily still has a cold, poor little thing. She can't take any cold medicine either, but thank goodness it's just a stuffy nose and not fever and cough. It's amazing how just adding a cold to the mix of what we have to do on a daily basis can put us so far behind. I honestly don't know how I would be coping if Angela didn't come here to help me, and Alicia didn't listen to all of my vents...pretty lucky to have you girls!! Also giving meds three times a day just feels like so much more than 2. I've had to set the alarm on my phone so that I'll remember the afternoon medicine, but then I'll be out and realize that I didn't bring it with me. I keep a backup in the car, so I'm always able to give it to her, but walking 30 minutes back to the car is sometimes a pain. Plus it must taste so terrible based on the faces she makes and it's 3 bites, 3 times a day...so 9 times a day she has to put something nasty in her mouth. (Along with all of her other medicines). No fair. Then, she'll be hungry, but too scared to take a bite. This sends her into a fussy tizzy. I can't say I blame her. Also having a cold can make meds so difficult. She so stuffed up that it's hard for her to chew and she's been less hungry, so meds have sometimes been taking an hour to an hour 1/2. Also she's drinking less...because she can't breathe through her nose while drinking, so she'll just get frustrated and throw the cup. Again, can't blame her. :) But drinking less for her can lead to kidney stones, so I feel like an overworked water pusher. haha!  I want this cold to take the next nearest exit out of here!!! In fact, I'd be more than happy to take it from her if I could. This makes me smile because it's something my grandma always said to me..."If I could take that stomach bug from you, I'd be happy to do it." And if I could eat that nasty pill nine times a day for you Lily, I'd be happy to do it.

MRI Results (2nd Since Starting Afinitor)

Lily's MRI results showed no reduction in the tumors, but no growth. At first, I was pretty devastated by this news, but after talking to other moms, I came to realize that no growth is really a success. And really with all of the new things Lily is doing coupled with the reduction in seizures (0-2 a day), it's actually quite good. Also we have to consider that obviously it is working in some way even if we can't see it on the MRI. Now if she could just get over this cold!! Also, she's still feeding herself! Hooray!!!

Pretty Team Lily Girls!

Thank you so much Alicia (my BFF) and Brooklyn (Lily's BFF)! We love you and couldn't imagine a life without your love and support!!!

Sicky

Lily has a cold and since she can't take any cold meds save advil and tylenol, she's miserable. She also has a canker sore in her mouth from the Afinitor. Ouch! She has cried so much today. Finally, I got her in the van, put on a dvd, and got her some McDonalds (for a treat). It helped!!! But now she's fussy again. Poor girl. :(

Angela's Our Angel

I cannot tell you how comforting it is to have a nanny that comes in twice a week and sometimes more that is so good at taking care of Lily. Most importantly, Lily loves and adores her, and she also feels so comfortable with her. For years we never had much respite, went to a film, or on a real date, and now we have that time to recharge because of Angela being here and we get to do it on a regular basis. It makes us better parents because we have the time to relax, and it's so doable because of how bonded Lily is with Angela. She really feels like a part of our family. Angela knows how to think out of the box, is open to doing physical therapy, is great at reading her cues, and most importantly just has an enormous heart and kind spirit and a God-like amount of patience. Lily also loves to be around her beautiful children! Last night, Scott and I went on our forth or fifth date and saw our second film in a matter of weeks!!! Angela has changed our world. She makes all of our lives so much better! This is the importance of having a good team and a village. So thank you to Angela for making Lily's days with you so full of fun and for being a great learner and being ever-adapatable!!! We love having you in our lives!!!

I got this!

For two whole days Lily has been feeding herself at every sitting!!! Well, we have to give her meds, so it actually means that at the start of breakfast and her snack before bed we are giving her the bites because it's too messy and crucial to trust that she got down 10 pills! She is even resistant to help when she's eating, which we feel shows that she is enjoying the independence! It allows her to control for how fast or slow she eats and how much, which is amazing to watch! Usually at the end of the meal, we offer her a few bites to see if she's still hungry and usually she has satisfied herself on her own! Angela, our wonderful nanny, is so good at helping Lily with her eating independence and even saw her eat 5 little pieces of candy!! Hooray!!! We're all so proud of Lily!

It also looks as though she is coming down with a cold. :( Unfortunately, because she's taking a medication that lowers her immune system, it can take her awhile to get over a virus. I'm hoping this one will be short-lived! Also excited to get the MRI results; I'm hopeful that the tumors have shrunk! I will post the news as soon as I know!

Thank you Shelly!

Thank you for supporting Lily and our endeavor to cure tuberous sclerosis!!!

Happy Father's Day!

Scott knows that having a child with special needs means that he has to be more than Mr. Incredible...and he does it so well. He just pours over with love for Lily, and she knows it!!! So, when Scott got up in the morning after sleeping in, he had coffee and presents waiting for him. Lily helped make him a card with stickers on it~~she picked out butterflies and flowers; I told her he might like the planet ones or the frogs better, but she picked the flowers twice, so that's what we bought. :) We then headed to the zoo and had such a great time! We were even blessed with a little bit of sunshine! And at the end of the evening we went to our awesome neighbor's house, Becky and Garth, and had dinner with her brother and wife as well. Becky & Garth make a mean peanut butter cup pie! Lily loves being around the other kids, and I know she gains so much from it. She fed herself for the whole meal...in fact, she fed herself for the whole day on Father's Day! Lily also drank from a real sippy cup! We love seeing her advance! It was a perfect day for an awesome dad!!!

So Glad She's Feeding Herself Again!!

Lily Fed herself her whole peanut butter and honey sandwich for lunch, and tonight she fed herself turkey, squash, and a breadstick! I'm so happy the skill is back, and that she's doing it with other foods! She's also going into a high kneel and getting on her hands and knees more. She screams most of the time when she's doing it; I think it's her motivating barbaric yawp! She takes the frustration and turns it into power!!

Pretty in Pink

Lily has been really fussy since the MRI. The getting up really early, coupled with the stress and anesthesia just takes some recovery time. But I caught a few smiles. :)

2nd MRI After Starting Afinitor

Lily had her second MRI after starting the Afinitor today, and we're hopeful that the tumors are shrinking! I suspect we'll have results in the next week. The MRI went well; in fact, the team at Swedish Hospital is fantastic! However, she couldn't get to sleep last night, and we had to get up at 3:30am for the early MRI. So by the time we got to Seattle, she was so tired (and couldn't fall asleep) that she went into seizure clusters. She had 5 seizures in 20 minutes...they were short (15-45 seconds), but starting to increase in strength. However, after that she fell asleep and the seizures stopped. Whew! Otherwise, the MRI was smooth sailing. I'll post results as soon as I have them. We'll have another MRI in three months, and we'll see Dr. Sotero in August to discuss in depth how the MRI looks.

School's Out for Summer

I'm pretty sure that as a kid I was always excited that school was out and summer was here, but this is not how Lily felt. In fact, she was distraught about not being able to see Ms. Sharon twice a week. I finally helped her understand that she was going to visit this summer and so school ending didn't mean we wouldn't see her again for three months. It fills me with such happiness that Lily has bonded and adores her teacher! She really is a special part of Lily's life, and we feel very happy that she's teaching Lily so much!! It will be longer before Lily will be able to see Joy, her physical therapist with the school district. She is new to our team, but has already been an enormous help to us! We're looking forward to having some more free time this summer (although I will be teaching her due to the fact that we think she'll regress), but we (and especially Lily) will miss our favorite teachers!!!

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!!!