Cloud 9

We have not seen a seizure in so many days!! I know there will be breakthroughs, and we've had reprieve before, but it's still such a celebration when we have a period of seizure freedom. I've come to realize how much the seizures interfere with not only development and attention, but also with quality of life. Even one thirty second seizure a day is taxing on all of us. I didn't recognize how much even a little seizure zapped all of our energy because of the worry, stress etc. I have had more physical and mental energy; it makes me feel good when Lily feels good.

She is still picking up a ball with two hands, feeding herself very well, playing more with toys, puckered her lips for a kiss, sometimes responds with no to a question (while also shaking her head no as well), pushing toys away that she doesn't want to play with, and using uh-huh with more frequency to mean yes. She's also paying attention to longer books and laughing at more complex things. She loves being told that she's clever, pretty, and her favorite is that she knows how to help! We have a toy that counts and when it gets to 10, I'll say, "Lily knows those numbers already, she's so smart," and she just cracks up laughing. She also likes for us to vocalize how she's feeling, as in, "Lily is tired of being in her high chair; Lily is done with dinner." Then she'll laugh and say, "uh-huh!" I would say that that after three years of fighting tuberous sclerosis, that it is the Afinitor that is helping her. It must be--we've never seen this much development progression, even during seizure lulls. It fills me so full of hope. Of course, there's always the worry of the side effects and all of the future unknowns with a newer drug, but it's all we have, so we have to gamble a bit. I'm so pleased with all of her progression that I try not to think about it and just focus on today. And today my friend is cloud 9!!!

NW Trek Fun

Enjoying so many seizure-free days!!!

Little Lily Riding Hood

6 days, only 1 seizure! Since she's been feeling so good, we went out to see our wonderful friends in Gig Harbor and have had a brilliant weekend!!! A little normalcy goes a long way!

More Advancements

Lily has said no a few times this evening when I've asked her a question. It's, of course, hard to tell whether she's really, truly answering me with no, but it sure sounds like it! Over the last few days she has also been raising her arms up above her head...this may seem trivial, but this is definitely a developmental move for Lily. She also picked up a ball with two hands! It's great to see her doing new things; I really hope she keeps these skills! Also, Lily has lost almost all of the hair on the back of her head (it's about an inch long). At least the top covers it!

Other than that, we've been enjoying the cooler weather...back to how I like Western Washington, cool and crisp with a little bit of sunshine mixed in! I'll try and post a video of her saying no, and you can be the judge of whether or not she is really answering me. :)

I Can Tell That We Are Gonna Be Friends

Lily has a best friend named Brooklyn. They have known each other since birth as I met her mom, Alicia, in the NICU because she was Lily's nurse, and she is now my very best friend. One day, when Brooklyn and Lily were together, Brooklyn saw Lily have a seizure. To my recollection, neither Alicia or I mentioned that Lily was having the seizure, but Brooklyn went over and started patting Lily and started saying "It's ok Lily." Brooklyn also would help Lily drink by tipping her cup up or handing it to her. She would also place toys in front of her. She would do all of this without being told. She just seemed to see what Lily needed, and she just naturally provided. We have to remember as well that Lily is unable to play with Brooklyn in the traditional way. Lily cannot speak words to her nor can they play with toys together, and Lily cannot run around with her. Brooklyn has never seemed to either notice or care what Lily could or could not do. Brooklyn also has a little snow globe of Seattle that I got her so she could remember where Lily lives. Alicia told me one day that Brooklyn was sleeping with it and told her that's where her best friend is. Today Alicia told me that she was explaining to someone that Lily had tuberous sclerosis and could not walk or talk, but Brooklyn was quick to say that she WILL walk!!! And today I put Brooklyn on speaker phone and Lily started to say Ba Ba Ba Ba over and over!! It's amazing to see all that Lily is learning, but it is not any less amazing to watch such a beautiful girl as Brooklyn show an amazing amount of compassion and sweetness all on her own at such a young age. She brings such unwavering hope to what she believes Lily can and will do! And to Brooklyn it seems as though she doesn't even know Lily is disabled, she is just Lily. Now who could have a better friend than that?

Neurology Appointment Today

The neuro appointment went really well and Lily had a really good day--better than we've seen in weeks. Coming down on the melatonin made her less groggy and so much happier!! Whew! The last few weeks have been rough, but now with a regular antibiotic for the UTIs and getting her melatonin down to the right level should give Lily a break from feeling bad!! Also, Lily will have another MRI in December and if the results come back that the tumors have not changed, or even better that they have shrunk then we'll only need an MRI every 6 months to a year! YAY!!!

Got So Much Things to Say Right Now

The last few weeks have been this crazy roller coaster. She's doing better, and then she takes a turn and then back to better. It's hard to keep up myself. So after the big seizure, we thought she was struggling with sleep because she was getting up every morning and wanting to go back to bed within an hour and a half. Then by afternoon, she was screaming a lot and sleepy (which would trigger a seizure if she couldn't get to sleep). But after taking multiple, very short naps, she would be in this fabulous mood by evening. So with her Melatonin raised to 9mgs, we thought if she's still groggy all day then maybe she's having seizures in her sleep. All that said, when we looked at our seizure log, the only time she was having a big seizure is when she was super groggy and couldn't get to sleep. But we stayed up really late one night to see how much she woke up. She had a few turn overs and made a little noise but went back to sleep immediately. Then we had to assume that maybe we're coming at this from the wrong angle. Was it possible that she was doing better and didn't need such a high dose of melatonin and this is what was making her want to go to bed at 9:30am? Well, our best bet was to test it. So last night we gave her 3mgs of melatonin to see how she felt. This morning she is awake and perky, happy and babbling and it's 10:30!!! That to us is a sign of her doing better...needing less melatonin!! She is also screaming less--yay!! Of course, this is just one night, and we require patterns around here, but the reduction seems promising!!

Developmentally, Lily is still feeding herself; in fact, she has now progressed from raking the food and struggling to get it in, to doing a pincer grasp to pick up individual pieces and getting the bites in with ease!!! She's saying dada to daddy and yesterday she turned and looked at me while I was in the kitchen and said mama. She wants to talk!!! Today she is also just more "with us" and we couldn't be happier!!! Since Lily is really focused on speech right now, that is what we are focused on as well. Lots of speech therapy at home with us and the school district will be adding in speech for the school year as well!!  Really, what an amazing difference Afinitor has made in our lives! Lily has also lost quite a bit of hair in the back and it is also definitely thinning. I'm not sure if this is the Afinitor or not. She also likes to rub her head on the ground a lot being silly, so that could be contributing as well.  We'll ask her neuro Dr in Seattle today. We're excited to see them and most especially Alice~she's one of Lily's best cheerleaders and just calls to check in on her! Lucky us! We'll also be hearing about the MRI results from the Dr, so I'll let you all know if there is any new information. Well, Lily's babbling up a storm right now so I need to go and take it all in!!!

Too Tired to Wax Poetic

Seizures suck. Lily had a nasty seizure yesterday, and we suspect she may be having some at night as well. We had taken Lily out for some fun and as soon as we got there, she had this big seizure. They called an ambulance (I think we scared the crap out of them). She was fine afterwards and is doing well today. We will get blood work today and check her med levels and then see her awesome neuro Dr and team soon. Plus they will decide when we see the Dr if we need to do an video eeg.

On a better note, Lily has been trying so hard to talk, she's been holding her arms out to be picked up, she's interacting more with her toys, and I see less autistic features. Afinitor is really making a great difference cognitively. I just hope that we really start to see some more seizure improvement soon.

Picnics Galore

Lily's seizures have decreased back down to 0-1 a day. There are always those little questionables, and during an eeg, they are sometimes little seizures and sometimes not, so I don't count them because if I did, we could easily overmedicate~and even those are very few. It just goes to show how having an infection or the lack of sleep can really increase the seizures.

Yesterday Lily took a 3 hour nap--that's probably the second time in her life she's done that, so I did utilized one of the urine tests strips they gave me at the urologist's office. The nitrites were high, but she did not have an elevated white blood cell count. I'm not sure if the nitrites being high on their own equates to a UTI, so I'll call the Dr on Monday to find out. It's really great to be able to check for a UTI rather than waiting until she's miserable and her pee stinks....by then, we're so far gone that it becomes difficult to manage. I like this plan and think it will really help Lily!!!

She's also been tossing around some consonants lately, dada is her favorite. I know she's frustrated not being able to walk and talk, but this is one of those parts of parenting where you have to let her fight through it. Eventually she will answer uh-huh or roll to what she wants. Bringing her the toy she wants doesn't keep the motivation up. Then once she rolls to a toy, I reward her by moving others closer. Baby steps. :) She is also such a nature girl. We've been having a picnic lunch every day outside, and her mood changes so much when she's outdoors. She also prefers the earthy ground to the blanket and likes to lay in the grass and run her fingers through the blades. It's great for me because I can lay on the blanket and read a book while she has lunch and soaks in the sunshine. We gotta get it before the rain sets in...I may get a tent! ha ha!

Strawberry Fields Forever

No one I think is in my tree
I mean it must be high or low
That is you can't, you know, tune in, but it's alright
That is I think it's not too bad

Living is easy with eyes closed
Misunderstanding all you see
It's getting hard to be someone but it all works out
It doesn't matter much to me

Always, no sometimes, think it's me
But you know I know when it's a dream
I think I know, I mean a "yes" but it's all wrong
That is I think I disagree
Let me take you down, cos I'm going to Strawberry Fields
Nothing is real and nothing to get hung about
Strawberry Fields forever....

Beatles (Love version, minus some of the chorus)


You know when you hear a song, and it just makes sense for where you are........
With so much pain and loneliness from this disease, there is also this place of magic and a specialness that only Lily and I share. Without words we speak to each other. When our foreheads touch, and we both close our eyes...we understand each other, and we do it without words. I can look at Lily and just think "I love you" and she understands and returns the sparkle. Love knows no boundaries. It requires no words. And at the same time, I feel as though the pain is mine to hold. This blog has become something of a catharsis for me. I'm a very private person, and yet, here I am, telling you that the suffering of this disease is primal, and it shreds me. But I also have this amazing magical relationship with my daughter that cannot be reproduced. It lives in our souls. With every blessing, there is a curse. With every hero, a villain. With every obstacle, a new view. It's amazing, this life, and yet it is maddening as hell. Yeah, in the end, no one I think is in my tree. As no one is in yours, but we have Strawberry Fields together.

Edvard Munch Invasion

Lily had another strong seizure, but I have not seen any more with that intensity after those two, so hopefully we have surpassed that hurdle. Today, however, has been a true test of parenting 101...is it 101 with a medically fragile child...maybe Parenting 4300. LOL. I woke up to her screaming, grunting, and flailing, and she has been in that state since she got up until now at 200pm when she finally got to sleep. Since Lily cannot speak, it makes it difficult to know what she wants. Are any toddlers that great at expressing their needs and feelings? Probably not, but I think that the difficulty level is increased when she is unable to even ask for a drink. When she is in The Scream mode, I start with the list: Water, Food, Diaper, Sleep, Change of Environment, etc. When all of those things have been tried and failed, I go into the medical checklist: fever, mouth sores, ears, etc. Once I have verified that all of the possible medical symptoms she could have are nonexistent, I have to assume toddlerdom has sent her into a psychotic fury of irrational emotions that plague the tiny human species. It's just a part of growing up and having this enormous wide range of emotions that makes them feel like the world is falling apart. Trouble is, it can be so exhausting, and I don't know if there is some medical problem or pain that I cannot see and that adds immensely to my worry. So if tantrums weren't hard enough to ignore, worrying that she's in pain adds to that difficulty. Regardless, I make every attempt to do the right thing. And I do it consistently, so I can only hope that Munch's The Scream is eventually transformed into Da Vinci's content Mona Lisa for more of the majority of the time. No one said parenting would be easy, but no one ever told me it would be this hard either. I think by the end of this stage, I'll have some cheesy t-shirt that says "I raised a toddler and still have my hair." That is, if I still have hair.

Dancing with Meds

Lily still has a cough, but her temperature is back down to normal, so the cold is on the mend. That's the good news. But then, this morning, while taking her meds, she started to cough and vomited some of her seizure medications. It wasn't enough to again administer all of her meds, but I figured we would see some breakthrough seizures...but unsure because it's impossible to tell how much she's lost. Sure enough, after being unable to sleep during her afternoon nap time, she had a huge seizure at 4:30pm. I always hate seizures; there isn't a seizure that happens that doesn't hurt a little~~even years later, but the ones I really despise are the strong ones. Her face turns bright red, her breathing becomes shallow and rapid, her eyes dilate, her little arms slightly shake, and she lets out a soft, uncomfortable moan that sends your adrenaline into overdrive. These are the seizures you really have to time and intently monitor her breathing, and I just never know how long or intense it will become. Fortunately, although strong, it only lasted about 30 seconds. 30 seconds can feel like long time.... It was also obvious how strong it was because she was immediately so tired and went straight to sleep. I really hope that this will be a one time thing, and that she ingested enough of her seizure meds to keep the scary ones at bay. All I can do is watch and wait and administer emergency meds if I see another one at this severity. Boy, it's gonna be a very long night...How could I sleep?

Sweet Lily Sparkles

I took this photo and Lily looked so angelic and sweet, so I gave it some sparkle. And then I started to laugh because even though she looks like she's thinking about flowers, magic, and butterflies, she's actually staring down a turkey and cheese melt!!! So now every time I see this photo, it gives me the giggles. 

Waiting at the Doctor's Office

When you're feeling crappy...dress fancy--it helps!!!

Arkansas Walk for Lily!!

Our amazing friends Aaron, Alicia, and Princess Brooklyn could not make it to Seattle for the Tuberous Sclerosis Walk, so they held their own! Seriously, I couldn't have wished up more dedicated and loving friends. They are family to me, and there isn't anything I wouldn't do for them!!! Thank you so much for being on Lily's Team and for always helping us climb this mountain! We love you!!!

Urology and Pediatrician

On Thursday we went to Seattle Children's for Lily's Urology appointment because she has had about 4 UTIs since the ureteral reimplantation surgery. Her doctor put her on a prophylactic antibiotic for the next year to try and curb the constant infections, which I think is a great idea. Since it's not just the seizures and tumors that interrupt her quality of life, it's the constant infections, be it ears, UTIs, etc....she's sick so much of the time. I really hope that this helps her stay well. Also, today we went to the pediatricians office because Lily has been running a fever for the past week and has just developed a cough. It was pretty obviously a virus, but I just wanted to make sure that nothing had progressed into her lungs since she can be more susceptible to infection on the Afinitor. All checked out well, so I'll just keep her on her regiment of Advil to keep the fever down. The virus is definitely increasing seizures, but not having to use Diastat or any other rescue, save one time. Hopefully the virus will pass soon...I have it now too, so it's easier to just cuddle together and wait for it to pass. What do you say Lily, wanna curl up in the chair together and watch Tangled for the 10th time? Yeah, me too.