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.