Happy New Year!!! Ringing in 2013!!!

On this New Year's Eve I was thinking back on the year, and it was great to realize that we did not spend one night in the hospital! Her first few years of life, we averaged 60 overnights a year in the hospital, and now we're at zero!! 2012 was also the year that Lily started Afinitor, and what amazing advancements have been made this year due to this medication! Seizures are still at 0-3 a day and most days are 0-1 and her seizures are down to 15 seconds or less. Also this is Lily's first year that we did not have to use Diastat!! We had a few times where we had to use Ativan while adjusting meds, but we used to go through Diastat very quickly and Ativan was a weekly rescue med. I can't remember the last time we had to go to the ER (those averaged 15 times a year) and only one ambulance call this year (these used to average 10 or more). Seriously, what amazing advancements!!

Also, Lily has learned to feed herself, to play with toys, to increase eye contact, to last an hour at home school (She loves Ms. Sharon), to recognizing grandma's voice on the phone (she can't stop giggling when she hears grandma), and is progressing towards crawling and walking all the time. We have so much to be grateful for. I won't say that 2012 was easy because tuberous sclerosis is never easy, but we are no longer in the state of constant medical emergency. I believe a lot of this progress also comes from moving her care to Dr. Sotero's team at Swedish Hospital in Seattle. It has been such a relief to get medical care for Lily where we feel confident in their expertise, and we always find that they listen to our needs and concerns--a very different place than we were in at the beginning of Lily's life.

With all of our movements forward, Lily was sick a lot this year on Afinitor, but for the last 2 months or so she has been doing better--since the addition of the probiotic and prophylactic especially. With her doing better, we are starting to get our lives more organized and getting Lily on a better schedule which will hopefully bring us even more normalcy and calm.

I hope that 2013 continues with advancements at the same pace! And who knows, maybe in 2013 Lily will crawl! Maybe she'll walk! Maybe she'll talk! Maybe we'll get better seizure control! And Maybe, just maybe, (nothing wrong with dreaming big), we'll find a cure!

Better Living

In our effort to organize our day, we set out a malleable schedule for Lily and things went so much better!! We really had to work with Lily on waiting for the next meal, but she's advanced so much that she seemed to understand and be willing to wait. For so long she has been so sick and developmentally behind that she would ask for food, and like a baby, would expect it immediately. Now she is learning to wait and it means that we're not jumping through hoops constantly--she's learning and I'm glad to be finding ways to make our lives run smoother!! We even got out of the house and went to Gig Harbor to see our friends Mona and Mel and had lunch. A great day!

Organization

This weekend's theme is organization. I must find a way to streamline our lives. We get up in the mornings and it's run like a gazelle. We have meds to pull, food for medication to make, coffee to brew, carry her downstairs, diaper to change, gently brush her knotted bed head while she screams, and get the 13 pills down (she will spit them sometimes so you have to watch her like a hawk). Then, she's ready for 2nd breakfast, so we start making more food--the healthy food. We get her in the high chair where she resists feeding herself, so we commence with parental occupational therapy and get her going, then she starts to eat...maybe. Or she'll want down because meds filled her up, but she didn't get any protein or fruit with her meds. If she doesn't eat her "real" breakfast, she'll be hungry in 30 minutes, and the 2nd breakfast you made is cold and nasty, so you're making more food, getting her back into the high chair and trying to encourage her to eat herself. Or, you give up throw a blanket on the floor and try to feed her yourself while she spins around, lays down and otherwise avoids you while belting out screams that she's hungry. In between, we're trying desperately to get 2 cups of coffee down. As soon as that is done, we start sensory brushing, swinging, and joint compressions to prepare for school. Next, we get her clothes on which makes her irritable and then put on her orthopedic shoes that she keeps kicking off. We're exhausted already and it's only 9:00am. By the time she starts her one hour of school or therapy, I have a huge mess from the morning to clean up, doctors to call, lab work to have faxed over, meds to refill, seizure logs to fill out and on and on.

There must be an easier way...our day goes on like this, it doesn't get easier. By the end of the day, it is not uncommon to find that I have not showered, and on really rough days, I have realized that besides coffee, I've had nothing to drink...not one sip of water. How long can one maintain this pace? Well I've been at it for four years, but I look like hell, and I think that it's time to try and focus on ways that I can make this easier for all of us. I'm not sure how to do it, but tweak at a time, I need to make it better. We can rarely make a date to see anyone or do anything because we have no idea how the day will go. Breakfast casseroles instead of making 2 to 3 breakfasts? When would I cook them? I don't know the answers yet, but I'm determined to figure them out. My brain is always so preoccupied with medicine and development that I don't have anything left for the basics, but it's the basics that we need. I have to get better organized!!! And sometimes I have to learn to forget the house and just leave it a mess and go to the zoo.

Christmas 2013

We really had a great holiday. This year Lily really seemed to know it was Christmas, she was so excited. When she came downstairs and saw that Santa had brought the giraffe she asked for, her eyes lit up and she threw her head back and laughed! (We suggested things she could ask Santa for and when we suggested Giraffe, she would always get giggly.) She also did very well with tolerating new toys and didn't seem overwhelmed nearly as much this year. We spread her gifts out over a few days and still haven't finished opening her presents. Maybe going slower was the key! She also really loved watching the Disney Christmas Parade on tv; she was squealing with delight. We relished in her excitement and even dropped a few tears in appreciation for how far we've come. I'm hopeful that 2013 brings even more positive changes!!

Giggle Girl

Lily is feeling a bit better now that the ear drops are starting to kick in, but we know that fighting that has lowered her immune system and since her doctor said that this years flu is worse than it has been in some time, we're trying to keep her in and away from the viruses so that we can have a illness-free Christmas. That said, she is so happy and alert right now. We're having so much fun playing with toys and being silly and watching her laugh and laugh. Her eyes sparkle and eye contact is much improved. What a great day...I think it's gonna be a great Christmas!!!

Dr Visit

Lily's urine checked out ok, but she has a double ear infection. It's just around the tubes and not too bad, so we got ear drops for now.  She's been tugging at her ears just today so that makes sense, but why she is sticking her finger in her nose, I don't know. Maybe just a toddler thing. I think it's funny. My ribs start hurting trying not to laugh because I don't want her to get a big reaction from doing it. She knows she's doing something interesting based on the look on her face. It's like, well whatya know, I got my finger in my nose. LOL

Also, she has grown a lot and is a little over 40" now, but she is still only weighing in at 31.9 pounds, so she is at approximately at the 79th percentile for height but the 18th percentile for weight. The doctor said we need to purchase milk with a higher fat content and add some butter or olive oil to her food. We will try to fatten her up some more!!

We're headed to Woodinville tomorrow to have her evaluation for horseback riding. Then it's Christmas vacation time!

Check up Before Christmas

Lily's been pretty sleepy lately, and today she was really fussy this morning, so we're going to take her to the Dr tomorrow just to make sure ears and urine are good. Don't want to end up in the ER over the holidays over something that could be checked now. She's also still trying so hard to crawl!!

9 Ways You Can Help A Special Needs Parent

This list was written by Maria Lin via the Huffington Post. A list that hit home.

1. Talk about your kids' personalities, not their accomplishments. I mentioned in the last post it can be hard to be around typical moms, especially when they're bragging about their kids' accomplishments. When I hear a mom tell me that her 3-year-old knows all the words to her favorite book by heart, it can hurt when my son can't speak. And it doesn't give me a lot of room to say anything in return. I'm not inclined to mention one of my son's accomplishments, like he made the "B" sound the other day, only to be met with compliments that can feel patronizing. But here's the thing: I'd love to tell you all about Jacob's personality. I want to share with you how funny and weird he is, how mischievous he is, like how he sticks his finger in his nose all the more when I say, "Ew!," just to get a reaction from me. How he is affectionate, silly, and determined to get his way. How he kisses fuzzies he finds on the ground, and is obsessed with elephants. I want to know about your kid's personality, too, which is probably more interesting than his or her achievements, anyway. No matter how impaired a child is, he or she has a personality and a spirit, and the parent knows it. Let's start talking about who our kids are rather than what they can do.

2. Insist on helping. No matter how "together" I appear on the outside, I can always use help. In fact, sometimes appearing "together" is the only way I can make it through the day myself. You'll notice I didn't write "offer to help." Offering to help is lovely, don't get me wrong. But from experience, I often have a hard time accepting help, even when I really need it. It's odd -- why am I trying to act like a superhero when I actually need help? Sometimes I doubt the offer, thinking they just feel bad for me or are just being polite. But if you insist on helping, it's fabulous because I feel like you will not take no for an answer -- it takes a weight off me. In terms of how to help, you can always ask, "How can I help?" and if a special needs parent gives you some suggestions, that's great. But if you find that this question is getting you no response, it's not because he or she doesn't need help. It's because she doesn't have the energy to figure out what to tell you. So if you love this person, be a detective and find out how you can help (and make sure it's actually helpful to the person). "I'm sending you a few cooked meals this week." "I found a few great neurologists in your area." "I'll drive your kids to practice this weekend." "I got you a housekeeper for a few hours." One way to help that will probably be universally accepted? Help watching the kid so the parent can have a break.

3. Stop with the maxims. I understand that people just want to offer hope and encouragement and don't know what to say sometimes. But I never knew a cliche or maxim that suddenly made everything better. Examples of things I've heard that are pretty frustrating: "He'll be fine." (How do you know this? And why are you diminishing what I'm going through?) "Everything happens for a reason." (A personal non-favorite of mine.) "He'll get there." (Again, how do you know this? What if there are some things he will never be able to do?) I sense sometimes that the maxims are really to make the speaker feel more comfortable with the situation -- but they don't help me. Please lose the maxims. Just be there for me. Tell me my son is adorable (it never gets old). Listen to me, cry with me, laugh with me. I don't need canned wisdom, I need friends, ears, and helping hands.

4. Extend me some grace. While in some ways my parenting experience is the same as a regular mom's, in many ways it's not. I can't begin to explain how hard it can be sometimes. Sometimes I'm exhausted from a rough week of doctors' appointments, or maybe you just caught me in a sad moment wondering if Jacob will ever live independently, or what will happen to him if I go first (sometimes this can be triggered by the smallest, most innocuous thing, like seeing a TV commercial or overhearing a conversation). If I am grumpy, snap, forget your birthday, cancel plans, or otherwise less than saintly, I hope you will just extend me some grace, and give me the benefit of the doubt.

5. Stop complaining about your kids. OK, we all get a license to complain about our kids sometimes (special needs parents included!). But please be sensitive to what you complain about to a special needs parent. One of my dearest friends with a typical and sensitive child would complain to me that her daughter had so many requests: she wanted her eggs cooked just this way, her pillow cold, her car window rolled down just this much. I told her that I would kill for Jacob to be able to tell me those things, so that I could do them for him. He's non-verbal at almost 4 years old and lacks the motor skills for enough sign language or the iPad (for communication apps), so it's painful when I see him so frustrated and unable to express himself. Don't complain to a mom of a non-ambulatory child that your kid ran around and knocked over your favorite vase. Save those complaints for your other friends, or don't make them at all. Because know that your complaint about your child might be our deepest wish for what our child could do.

6. Ask me how I'm doing. Often the focus is so much on our special needs kids, that the parents are overlooked. And guess what? We are driving the boat. Without us, our kids would be in trouble. The parents need tending to as much as the kids do. My friends often ask me about Jacob (see #7 here for a more helpful way to ask), which I love, but it would also be nice if occasionally they asked me about how I'm doing -- not in my career, or my hobbies or dating life, but how I'm doing in this role as a special needs parent. I don't often get to talk about how hard it can be, or how I'm tired, or how I had a good day or bad day. It might just be me, but a sincere "How are you doing handling everything?" once in a while, and readiness to hear an honest answer is all I need to feel like someone cares. Alternatively, sometimes it's just good to talk about other stuff ... so please go with it if I do.

7. Coercively pamper me. I don't know any mom, special needs or not, who will say no to a beautiful bouquet of flowers or a massage. I learned the hard way as a single parent that no one was going to pamper myself but me, so I got good at treating myself (if you're a single parent, read this to learn how to take care of yourself). And my son is much better for it -- he has a happy and energized mom who feels grateful that blue cheese tastes so good, or that her nails look nice (for some reason I always feel like a happier mom when I'm a little more put together!). Call this a shameless plug for more treats in life since the world's cards are stacked against us. A little treat with a note like "You do so much for Em, just wanted to make sure you're taken care of too" will probably do wonders for a parent's day, or week.

8. See my child. Don't stare. But also don't look away or avoid. My deepest wish is for you to see my child the way I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him, hang out with him, get your kids to do the same. Learn how to treat him with dignity and the profoundest respect, because a wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room. Oh, but that we might become one of those cultures! One of the most hurtful things for me as a special needs parent has been seeing others, even my friends, uncomfortable or awkward around my son. Please find a way to start really seeing and loving my child. It might start with spending more time with him.

9. Support my cause. At the very least, you can support my cause. I might not be close enough to some people in my life for all of the above points to apply, but it's meant so much to me when colleagues donated or ran to support my fundraising efforts for my son's school. You can speak up when other people say things like "retarded," "short bus," or "as long as it's healthy" and explain why it's insensitive. You can stop bullying or teasing if you see it. You can stop being impatient with the checkout clerk who seems to be moving more slowly. You can stop gaping or making rude comments at kids who look or behave differently out in public. You can stop making fun of disabled people (it sounds horrible, but we do it much more frequently than we realize)--or pitying them. You can cast special needs kids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera, he's a total ham!). You can make an active effort to have special needs kids be a part of your typical kids' lives. You can get to know us.

Moreover, you can stop seeing people's worth in their abilities -- their intelligence, talents, looks, achievements. You can start doing what's actually the harder but better thing: knowing and loving them just where they are.

That's what my son has taught me to do.

Afinitor Not Approved

We've been working for 2 weeks on getting Lily's refill on Afinitor (the med that's shrinking the tumors and helping her cognition) and hitting paperwork roadblocks. We have 12 days left. We completed all of the paperwork, done everything they asked, only to be told she was not approved. Now we'll spend all day on the phone trying to work this out and begging for her medication. We'd just pay for it, but it would be about $8,000 a month. We'll keep working--nothing is over until we decide it is.

Update: The AMAZING team at Dr. Sotero's office (specifically Makeya (sp) and Alice) has helped us so much with all of this. It looks like we will be able to get the medication through a specialty pharmacy for a low cost. Will let you know when we find out for sure! I'm panicking less now. :)

Update 2: Finally we found out that the Afinitor will ship and be here tomorrow, and our copay is zero. Whew! One battle down...on to the next. 

Christmas Beads

Guess who I busted pulling the beads off the Christmas tree? Yay! Go Lily!!!

It's so great to see her doing new things! Today in school Ms. Sharon said she was identifying red, orange, and green really well and pulling the pieces off of a knob puzzle that she's been teaching her to do! She's still working on crawling as well and has successfully military-crawled a few times at a very short distance. All steps forward!!!

Letter to Saint Nicholas

After the kindness Santa showed us, we decided to take him some cookies and the following letter......

Dear Santa & Team,

A few days ago we brought in our three-year-old daughter Lily to get her holiday photos taken with you. Lily cannot walk or talk or smile when asked to, but we wanted her to have the experience because every time we bring up Santa, she becomes very excited. We were overjoyed that, upon placing her into your arms, she leaned back as if she had known you forever. Moreover, you all treated her with such kindness and respect. And when she wasn’t doing a lot of smiling, you picked up a book to read to her and captured a gorgeous photo that has had all of those around me weeping, ourselves included. The photographer was kind and patient, and no one seemed to care about the line that continued to grow. You kindly gave Lily her moment with Santa. And then as I went to the checkout to purchase the photos we selected, I was told that Santa had paid for them. We left the mall with wet faces and hearts full of gratitude.

You see, Lily was born with tuberous sclerosis: a rare disease that can cause tumors to grow on all of your organs. Lily has had seizures since she was 4 months old and still has them most everyday. She also has over 30 brain tumors, but is on an oral chemo drug that we hope will help shrink the tumors and has been helping her cognition. She is a sweet, snuggly little girl who understands so much more than she can express. Our pain, the meds, the worry, the seizures, they do not go away for us just because it is Christmas, but showing us such selfless generosity gave us a beautiful moment that cannot be bought in stores. It is, without a doubt, the true meaning of Christmas. We are humbly grateful for your kindness and wish you all of the magic this Holiday Season that a true Saint Nicholas and his amazing team deserve.

We humbly thank you,

William, Heather, & Lily Brewster

P.S. We hope you enjoy the cookies!

Santa's Gift for Lily

I lifted Lily into Santa's lap. She was tired but happy in his arms. It was hard to get her to smile, so Santa said, let's read a book, Lily. He didn't seem to care how long the line was. I started to get teary. Then when I got to the check out to buy my photos, they said Santa had paid for them. Merry Christmas Lily.

Christmas Train Mishap

Since Lily loves Christmas trains, we thought putting one under the Christmas be would be a fun!! She loves the train--it plays Christmas music and makes real train noises and has a headlight. Super duper choo choo appeal. In fact, it is so appealing to Lily that as it was chugging it's way past her, she lunged forward and grabbed the train to pull it off the tracks. Unfortunately, it pinched her fingers, and although it didn't break the skin, it really hurt, and she cried a long time. That's when we realized that this was the first time Lily has really hurt herself by doing something besides falling over--and even that is pretty rare. It really scared her! 

So, the next day, dad sat down with her next to the tree, and thought well I'll turn on the train and make sure that this time she can't lunge for it. Before he even pressed the on button, she realized what he was doing and started crying in fear! She has never had the cognition to remember that she was scared of something! I want her to get over the fear of the train and learn that she can like it but not touch it, but it's really amazing that she not only remembered the train but also recalled how it hurt yesterday. I feel like I'm getting so spoiled this Christmas with cognitive advancements, lowered seizures and a lot of new hope!!!

Chelsea's New Do

Kitty got a new haircut today. She's mad at me, but she looks so adorable and no more matted hair!!

Zoo Lights in Tacoma!!

We went to zoo lights with our friends Nathan and Diane and their 2 very sweet kids! It lightly rained the whole time, but we still had a lot of fun!!!

I Got This

Um, Dad, I think mom takes my socks off first when she does this.

Cake Pop Ice Cream Cones!

We made yummy cake pops today. The plan was that Lily would help and then enjoy some of the tasty cakes--but she had no interest in baking--only eating. (Lily doesn't like cold food, so I thought these would be a fun alternative). While eating, I asked her if she liked chocolate, and she giggled. Then I asked her if she would share her chocolate with me, Dad, Brooklyn, or Alicia. She said "nnnn" and turned her head away each time. Then I asked if she would share her chocolate with Grandma, and she sparkled and giggled!! So sweet--she loves her grandma!! And the cake pops were so yummy. I had about 2 bites and then we gave most of them to our surrounding neighbors as a little holiday treat!! Yum!

Will Work for Chocolate

This evening we were all playing in Lily's room, and I pulled out two toys to play with, an ark and a steering wheel toy. I showed Lily one time how to honk the horn, pull the gearshift, and press the cow. Then I told her that if she would honk the horn, I would give her a piece of chocolate candy. She honked the horn. Then I pulled the gearshift and said, if you'll pull it, I'll give you another bite. She pulled the gearshift. Then I said if you'll push the cow, I'll give you one more piece. Then she started pushing in front of the cow, and so I put her hand on his head, and she immediately pushed down!

In the last year with Lily taking Afinitor, we have seen improvements and advancements at a rate that has been completely unheard of in Lily's life. It's absolutely incredible to me to see her changing and morphing into a child who is not only more alert and aware of her surroundings, but also interacting with them!!

33 Amazing Seconds

Lily had physical therapy this morning and her wonderful therapist, Joy, has been working on some standing with Lily. Joy has to position her own legs in a way that keeps Lily's feet on the ground and her knees from bending, then she lifts her under her arms and straightens her up to standing while I let Lily hold my hands. Today we stood Lily up as we have been, but this time, Joy let go of Lily's torso while I continued to let Lily use my hands for stability. And then....she stood there with minimal support~~~for 33 amazing seconds!!! She's getting stronger every day!

Catching Smiles at Seattle Children's Hospital

So Close to Crawling!!

Lily is so amazingly close to crawling! I have a great video of it, but Scott was ordering pizza, so it has some personal info on the video that I don't want to post publicly. If you want to see it, email or text me and I'll send it to you. She's so motivated to get to toys, so we set one or two down away from her, and we get to watch the magic of her trying to move!! I'm hoping Santa brings some new toys that really get her going!! :)

Dancing Eyes

Yesterday we took Lily to a very long-awaited eye appointment at Seattle Children's. She goes to an opthamologist every year to check for tumors; however, we wanted a more specialized doctor to look into her (what we call) dancing eyes....like nystagmus. Other eye doctors have seen it, but we wanted to go to a doctor that knows more about the condition and to verify whether something could be done etc. We first saw a student doctor and a resident, they asked a million questions regarding Lily's history, which they had a copy of but they were verifying. Then did a few visual tests, which Lily passed. Then we saw the doctor who then had us go through the entire history again, but that's ok, it's a teaching hospital, so I understand the process. But it is just an eye appointment. He looked at her eyes and diagnosed the shaking as ocular flutter, a very rare and understudied condition. It can blur her vision by a few lines, but there is not a treatment. He did say that her flutter is very fast (between 5-8 Hz). It's faster than the human eye can voluntarily move, and, as suspected, it's most likely caused by a tumor. Then they dilated her eyes and left us to sit for hours...seriously, we sat in the hospital for 5 hours waiting for him, and we still had an hour drive home. Lily was pissed, and we were right there with her. This is an eye appointment not a pre-surgery workup!!!  Nevertheless, he checks her eyes and no tumors. Yay!!! We're happy to get a positive result and were grabbing our bags and headed for the door, but oh no....he wants to go through the medical history AGAIN. And in explicit detail...obviously he is completely oblivious to not only our current state of exhaustion but the emotional wounds that are connected to all of these seizures, surgeries, and diagnoses. I was in no mood to relive the 5 weeks in the NICU, or the infantile spasms, the five hour ambulance rides to Texas, and on and on. But I carried on reiterating for the 3rd time, the long and exhausting journey from whence we came. He was also pretty insensitive...when he said that the flutter could cause blurriness, he then said "but at her developmental pace it doesn't matter if her vision is somewhat blurry." Really? I disagree. Lily's vision matters. She has just as much value as anyone else. Grrr.......   So the bad news is, Lily's flutter has no treatment. The good news is, she has no tumors. And I now need a spa day!!

Toys toys toys!

For years, Lily has really never cared too much for toys. It was always an amazing moment if we could even get her to touch a toy or to look at it for very long. But now, she is toy crazy! It's so great to see her not only interested and interacting with toys, but also doing her very best to get to a toy that isn't near her. This kind of motivation will be key to crawling! I can't wait for her to open her Christmas presents this year, since it will be the first time that she is really wanting to play with new toys!!! Seizures are still down at around 0-2, and we have her eye appt at Seattle Children's tomorrow. She's still doing well and hasn't had an illness in weeks! Hooray!!!

Three hours later....

When you have a child with a lot of medical issues, you expect to spend a lot of time at the doctor, with physical therapists, in the hospital, and at the pharmacy. What you may not expect is the inordinate amount of time you will spend on the phone with the billing department at a hospital, with your insurance, with programs to try and get some assistance. In fact, I spend an enormous amount of time trying to get things handled because other people aren't doing their jobs~for whatever reason. Today I spent 3 hours trying to fax 72 pages to an assistant program to see if we can get some help with the cost of Lily's wheelchair. I have to do things like this while our babysitter is here. I would rather be taking a hot bath after all the morning rituals, but instead, an enormous amount of medical bills and paperwork must be addressed. So many things suck time, and I have found that if I don't shove the papers in a file, turn off the phone, and force some free-time in our lives, we simply will not have any. So, I'm essentially saying that after three hours of faxing away my free time, I'm shutting off the phone, and we're disappearing-- just for awhile!!!

Medical Catch Up

Since I haven't posted a lot lately, I wanted to give a general medical update on how Lily is doing. Her seizures are better controlled with the Trileptal and we're down to 0-2 a day. Mostly it's 0-1, but every now and then she'll have two. They are about 5 seconds long, and she pops right back up afterward. This is really good seizure control for Lily, so we're very pleased. Developmentally she has started sticking her tongue out at me when I do it to her. This is our first real step at mimicking. A huge deal!!! Once you learn to mimic, it helps you to do so many things. She is also really motivated to get to certain toys. She has learned to play with a toy on her tummy or on her hands and knees. I can tell that she tires quickly in quadruped, but even if she does it for a few minutes, it helps her gain more and more strength. She is saying dada more often, and I'm addressed as mmmm. She is doing really well with school and gets so excited when she knows Ms. Sharon is coming! She's getting better at using the iPad as well. I have been focusing a lot on making the choice between a drink and a bite, and she has progressed to touching drink, and then she'll hold out her hand for you to give her the cup--she obviously has learned what she's asking for!! An amazing advancement that I believe would not be possible without Afinitor. She started a prophylactic antibiotic and has not had a UTI in some time. Also, we are headed on Tuesday to Seattle Children's to see an opthamologist to check her vision, nystagmus, and to ensure that she does not have any tumors in her eyes. She hasn't been ill in some time either; we've tried to somewhat keep her away from crowds and kids to let her immune system catch up, and we also added in a probiotic that was recommended by her neurology nurse since there is some research showing that it improves immune systems in people on oral chemo. So, health-wise she's doing really well, and we're hopeful that we can keep this reprieve going!!!

Thanksgiving Day at Home

We had a very quiet Thanksgiving this year. (Last year was spent in emergency rooms, so a tranquil holiday was welcomed). We made a few of our favorite homemade dishes, picked up a roasted chicken and pies from Costco and called it a day.  This was the first time Lily had a poochy Thanksgiving tummy after dinner. She ate quite a bit and even had a little piece of pie. Then she laid back on her dad and let her tummy stick out!!! It was quite funny! This was also her first year to have pumpkin pie...she ate some but I don't think she was that impressed--she's more of a chocolate and peanut butter kind of girl!! It was mostly enjoyable to take a few days break from therapies and doctors and just relax!

Five Guys Burgers & Fries

Lily fed herself for the first time in a restaurant!! This is a big deal for us because Lily typically hasn't had the trunk strength or the eating skills to do this, so she would be in the stroller, and we would feed her. This also required her to sit so much lower than the table and it was great to have her up high with us!! We chose this restaurant because people throw their peanut shells on the floor, so we felt like if she made a huge mess, it wouldn't be such a big deal, but she actually did quite well!! You could tell she was proud of herself and she felt like a big girl! And of course we were just beaming!!!

Disney on Ice

We took Lily to Disney on Ice--Dare to Dream Princess Show. I cannot adequately express in words the fun we had! Lily recognized the songs, laughed, squealed, and sang!! This is a response that she would not have had 6 months ago. We had no idea that she would enjoy it so much, and we were elated to be doing a kid thing that Lily could fully enjoy. It was amazing for all of us to have a "normal" childhood experience! I'll post a few photos, but it was really dark in the arena. This was so fun....we will be back next year!!

Turkey Day Crafts

We did some decorative crafts for Thanksgiving; Lily held onto the marker and helped color the whole scarecrow! She loves the turkey too. I think she assumes he's a pet...when I make him gobble and walk around she just cracks up!!

Tacoma Children's Museum

We took Lily to the museum because we enjoyed the one in Portland so much. We did some art and then held her so she could splash in the water a bit, but almost everything in the museum was jungle gym type stuff and with Lily not walking, she couldn't do any of it. The moment we walked out of the door I cried. I want her to be able to play and slide. It was all ok in the end though....after a 2 hour vent to Alicia (what would I do without you)?!? We have to try new things and find a way to adapt the fun. Some tries are easier than others, and sometimes failing breaks your heart, but we just have to keep trying and finding kid things Lily can do. So we're going to Disney on Ice--I think she'll love it!!!

Starting Trileptal

Lily starting Trileptal tonight to help control her seizures. If this works well, we'll hold the Keppra where it is and start dropping the Clobazam to help with her sleepiness. The apothecary of Lily--ever-changing and never dull!!

Seizures after Keppra Reduction

Seizures are at 7 already today and it is only a little after 2:00. Gave ativan around 11:00 and they're still going. I had already called in to the neuro office this morning, so we'll see what they say. I'm betting she'll have labs and we'll go from there. The darn keppra was helping with the seizures, but making her so miserable. Maybe now that she's older we can try another med? Poor baby. The other days have not seemed so intense so maybe it's just a fluke, but I think she may need to have a replacement if we're removing the keppra. The clobazam just isn't enough. I'll update as I learn more.....

Happy Halloween!!!

We took Lily trick or treating at the antique stores in downtown Puyallup. She pretty much slept through the whole thing!! It was fun to dress her up and then we passed out a ton of candy. Lily was Little Red Riding Hood, Scott was an avatar and I went as Katniss from the Hunger Games. The kids loved Scott's costume! They were stopping and talking to him and loads of people were asking to get a photo. It was quite fun!

Special Needs Gear

Having a child that doesn't walk and has developmental delay starts to get a bit tricky as they get older, and specifically, as they get bigger. You have to think through how you're going to make something work and what tools you need to make it happen smoothly. I have a love/hate relationship with adaptive equipment. I love how it helps Lily and makes our life a bit easier, and I hate how using it can make me feel. Today we went out to Gig Harbor and put Lily in the wheelchair that we are submitting paperwork to purchase. It has good shocks (this is important to us because I don't want to be limited to parking lots and sidewalks). It also has a tray so Lily can feed herself anywhere. We've also opted for it to recline, have a sun shade (or a rain shade if you live in Washington), and hook ups that will let her get strapped into a bus if at some point we send her to school. (We're lucky that her school district is home schooling her--her immune system and seizures could not handle a public school at this time.) It will probably take a few months to get it...there's all the paperwork, Dr's letters, insurance approval, and it is custom made. All in all, I'm looking forward to getting it and will post photos of Lily's new wheels when it arrives.

Also today we bought a bath lounger. It was really becoming unsafe to give her a bath because she would throw herself back or throw herself forward. She's just playing, but she doesn't realize the dangers. Plus she is a slippery little noodle!! You literally couldn't safely let go of her to grab a towel. This will also keep her warmer and baths can last much longer--she loves being in the water!

Seizures are clinically pretty strong (showing strong signs of the seizure) right now, but are only about 10 seconds in length. We'll be checking in with neuro on Wednesday to see if they want to make any further changes to her meds.

Other than that, we're happy, having fun, and ready for Halloween!!!

Fall Foliage

We got out in the sprinkles to enjoy the autumn colors. I love the "talk to the hand" raccoon!!! We hung out with him for a long time. Lily was cracking up in the picture of the three of us because we kept squishing her, and she thought that was quite funny. She's not sick right now and seizures are manageable. She does, however, have a canker core on her lip caused by the Afinitor. :( The carafate seems to knock them out pretty quickly--other than that, we're doing great and having a lot of fun lately!!

Tacoma Holiday Show

Lily and I went to a Christmas show at the Tacoma Dome and had a great time! She was happy and laughing all day!! Lowering the keppra is making a huge difference! Only 2 small seizures! Hooray!!!

I Caught a Smile!!!

It appears that coming down on the Keppra is helping a bit! Hopefully we'll see more improvement as we continue to lower it. Not too many breakthrough seizures yet, but it'll be next week before we'll really see the effect of lowering the med. Until then she's enjoying a few happy moments!

Vision Loss?

Lily has had many vision tests since birth, and she has never had the eye tumors associated with tuberous sclerosis. It's also difficult to check her vision based on her developmental stage, but it is starting to seem as though Lily has some vision problems. I'm not sure if they seem worse or if her recent developmental advancements have made them more apparent. We have noticed that she's not looking at objects far away and while eating in her high chair, she is searching for the food with her hand and not looking at it. We know she can see some, but neuro seems to think that something is not quite right. We've been through so much since sweet Lily was born and have found some modicum of acceptance, but this scares the crap out of me. Teaching her with the limitations she already has is extremely challenging, but if she loses her eyesight, our Mt. Everest is tripled. Because my husband is legally blind (due to an accident), we know the difficulties that come with limited sight, but he manages with a high IQ...for Lily this would be devastating. We already have an appointment at Seattle Children's because we wanted to have her nystagmus examined by a specialist. We've been waiting on this appointment for about 6 months, so we'll have to wait until December 4th to find out where we are.  Could it be a peripheral loss from the Sabril that she took to stop infantile spasms?--yes, but it would be rare based on how long she took it--there would be no treatment for this . Could it be that her epileptogenic tumor is in the occipital lobe and it has damaged her vision?--Yes, there is also no treatment for this...possibly brain surgery but the risks would most likely outweigh the benefits.  Could it be that TSC has produced tumors in her eyes in the last year? Yes, and those could possibly be removed, but it's possible that the Afinitor would shrink them, plus vision loss from tumors is not all that common. Could it be that she just needs glasses? Yes, but we also know that she has other vision issues...eye control, twitching etc. I hope she just needs glasses, and that I look back at this rant and laugh that what makes me go mad is just a magnificent great love for my daughter.

Is Keppra the Culprit?

On Wednesday we saw Jenny at Neuro in Seattle, and we discussed Lily's growing frustration. Really it's more than frustration; it's anger. Sometimes she will scream, kick, and scratch and not for a goal like attention or food because she will continue without an audience and nothing that you offer her helps her emotional state. It has made it difficult to go places with her because she can go into this for hours, and there is nothing we can do to help her.  Keppra (one of her seizure meds) can cause behavioral problems, so we are lowering the Keppra to see if the behavioral/frustration issues decrease. This, of course, could bring about some nasty seizures, so it's a gamble, but isn't it always. Adjusting meds over and over is just a a part of the process. I'm very hopeful that we'll see some improvement because Lily's quality of life is greatly diminished by feeling so frustrated all of the time.

We're also starting a probiotic in the morning to see if we can stave off a lot of the illnesses she's getting. I'm crossing my fingers, and not walking under ladders, and keeping my hat off the bed, and not going near any black cats...hahaha...we really need these changes to help!!!!

Pediatrician Appointment Today

All went well at Lily's Dr appt. Appears there is no ear infection and fever not so high that we would consider a sinus infection. Seizures have been on the increase with the cold. She had 5 fairly strong ones yesterday, and I had to give Ativan to slow them down. Otherwise, we're just trying to get this cold out of here!!!!

Evicting Viruses

Lily had a cold for 3 weeks followed by a one week reprieve. And now another cold. We're headed to the doctor tomorrow just to have her checked out. She again has icky drainage, is pulling at her ears, and is essentially miserable. The thing is that Lily reverts back to being a baby during illness. She doesn't understand that the cold will eventually pass, and she doesn't understand that we can't take it away, so she essentially cries and screams due to frustration that resembles a neonate. It makes me feel just awful for her. Plus, we know that on the Afinitor it just takes so much longer for a cold to pass. I see other kids with colds and they are playing and getting their nose wiped and maybe they're a bit fussy, but not like this. Her little body is so fragile that it just wreaks havoc on her--and it brings the seizures in full force, which just adds fuel to an already unbearable fire. The best thing for us to do is try and distract her and keep her as comfortable as we can. We all also start to get a bit of cabin fever because she does not have the energy or the immune system to go anywhere, and so we will be stuck in the house for a few more weeks. Thank goodness we have Angela to help us~~taking a break from the crying and having a few hours to yourself really helps us come back to Lily with a clear mind and plenty of patience. And in another way, it's so sweet that Lily curls up in our lap and just falls hard into us and seeks our comfort. I would definitely choose for Lily not to be sick if a choice were given...I would evict the viruses! But we have to seek the positive in the present, and I really do love snuggling up with her!!!!!

Dippin' Dots are Dumb

That's ok Lily, I don't really understand the appeal either!!

Great Wolf Lodge Vacation!

We had a wonderful time at the lodge! Lily loved swimming, playing at the arcade (we hit the jackpot twice), eating fun sweeties, making crafts (Lily actually enjoyed coloring), and meeting all the fun wolf characters! We shut off our iphones for most of the trip, and when we came home, realized that we had no desire to turn them back on! Sometimes it's good to escape!!