Merry Merry Lily

Even after all of the madness with seizures that we've had recently, Lily has popped back up into the little girl we know that is filled with sunshine!! She's so happy and giggly!!

She had school today with Ms. Sharon, and she did amazing! Lily identified circle a few times, and she answered questions to the story they read. One of the questions was, did the polar bear live with his mommy? Lily answered "no" on the iPad--(he lived with his daddy). It's so good to see my sweet little girl back and to see that she's moving forward again.

I know that times of doing really well are sometimes brief, but I plan on just taking it all in and enjoying this medical reprieve. MRI results will be here soon, so I'm sure to be back on the roller coaster before we know it, but for now, we'll appreciate the merry-go-round.

I just woke up from a nap...

This is written by Jessica Law Feltenberger, a tuberous sclerosis mom. It's so familiar and hauntingly real for those of us that face this every day.

I just woke up from a nap...

I had a dream that I had a child and my child was sick with a rare, incurable disease. As I sat in a cold sterile hospital room and looked into the faces of multiple doctors I asked what any normal person asks when faced with a diagnosis..."What can we expect?"...And my words clearly English felt as though they were foreign, as if they were falling against deaf ears, and they were met with blank stares in return. I woke up and the haunting reality crept up my spine, the familiar heartache of being a young mother asking the question "But what can we expect?".

There is no answer to this seemingly simple, normal question. There is no textbook standard. Every morning you wake up and you open a new door. What awaits us on the other side of that door NO ONE knows. We open doors to dreams, to nightmares, to realty, to good days, to bad, to days that we just don't think we can make it through, to days that test our patience and days that we feel as though our entire worlds are crashing down around us, to days that we watch our children struggle, to days that we watch them smile and light up a room...

"What can we expect?" We can expect an adventure. Days filled with unknowing, wild, alarming adventure. Days that teach us to stand when our feet can surely walk no further. An adventure that teaches us the depths of love and strength of our minds and bodies. We can expect to become warriors fighting a battle. We can expect to become the best person that we were meant to be because we were chosen above anyone else to take on this quest. We can expect to learn the unwavering love of a child and just how deep our love runs for them. We can expect to find love and support from the most surprising places and that we will NEVER fight this battle alone.

To the young mother in my dreams, to the young mothers who have yet to know, to the mother's who have walked this path before me, to the scared mother I STILL AM TODAY....You can expect to become a hero.

One Year MRI after starting Afinitor

Lily had her one year MRI yesterday. We are very hopeful to see a change!! She did so well--this girl has enormous coping skills! She didn't even cry...oh, well once, when they pulled tape off, but it was very short-lived.  They had to do 3 IVs...kept having threading issues, but they give nitrous, so Lily sailed through them. We will have the results definitely by February 5th, at Lily's next appointment with Dr. Sotero, but if we hear anything before then, I'll update. Fingers crossed for smaller tumors!!!

Horseback Riding

This was Lily's first time riding a horse! She is in hippotherapy to help strengthen her to walk, but also it's just an amazing experience!!! It's a difficult workout for her, and she almost vomited after, but she liked being on the horse!!! I was a beaming, proud mama!!!

An Important Discovery

So, Lily got the ear infection and a cold, so seizures going up was expected, but they were getting worse even when she was getting better. So, we upped the Trileptal and everything went coo coo. She was having over 30 a day...she was having a seizure so often it was difficult to count. Once we figured this out, we stopped the Trileptal and things got a bit better. Since she has had this reaction to both Lamictal and Trileptal, we started to wonder if she was having an issue with sodium channel blockers which can be an issue for those with a missense mutation on the TSC1 gene. Lily's genetic testing for TSC was negative, but the testing isn't perfect. If insurance will cover it, we'll have more genetic testing to see if we can pinpoint some answers. Until then, no more lamictal or trileptal! What would we do without Dr.  Sotero and his fabulous team? It really takes thinking outside the box to treat this disease, and I love it that they always listen to us!! Plus we got to go into the office and see Alice--we adore her!! We have a new med we can start if they seizures don't continue to decrease. It's good to have my sweet snuggler back!!

Target Pharmacy

So I accidentally forgot to put Lily's antibiotic, for her ear infection, back in the fridge--and I didn't realize it until it had been out for the whole day. So, my husband called Target to find out if this particular antibiotic would be useable. They said it was not good anymore, and they would refill it, so he could just come and get it. He told them he was in Canada and I was with a very sick kiddo, but we would get up there so that she didn't miss a dose. But no, our sweet and awesome pharmacist didn't want me to have to load her up when she wasn't feeling well, so she brought it to me. I kid you not. When she got off work at 7pm, she took time out of her evening to bring Lily her antibiotic. Now that's amazing service!!! Oh, we will be spoiling her!!! Oh yes, she will be getting a very lovely surprise!!!

Feeling Even Better

Lily did really well with PT today and after a nap played for 20 minutes in her kidwalk. A good sign that she's getting better!!

Imitation Therapy

Virusland: Lily still has this darn cold. Yesterday seizures were coo coo...about 7 or 8 with one of them lasting one minute, so I gave ativan. It's been a bit challenging taking care of her on my own for so long (almost 2 weeks), but we've managed. I think every dish I own is dirty, and I'm digging for clothes out of the dryer, but I would rather comfort and distract her than have a spit spot house. However, Angela is coming today, and I look forward to bringing a little bit of order back!

Wheels: On Lily's wheelchair, they want $1200 up front just to order it, and we could owe more than that. I'm not sure how we'll be able to do it with our current medical expenses. We're trying to look into some programs for assistance and even considering some fundraising ideas. We'll get it--I'm just now sure how yet.

Therapy: After some research, I've chosen to start Lily on Imitation Therapy. We already do it with her on a small scale; however, we will start dedicating 15-20 minutes a day on this form of therapy. In order to speak or do many other things, you need to imitate. Lily will stick her tongue back out at us, but it takes a long time for her to do it. Anyway, we learn from watching each other. I mean, that's how I learned how to do the Hammer Time dance, and I'm fairly sure that I look just like MC Hammer when I do it. But I digress, the therapy goes like this: calm environment without distractions, we have two of the same toy (one for me and one for her), I do everything she does for 15 minutes. This is said to increase imitation. It's a relaxed scenario and should be really fun so that it feels like a game and not therapy.

MRI: We have an MRI on Friday to see where we are with the tumors. Really hoping for a reduction this time!!

That's it for now, I must get my cleaning mojo on!!

Lilyese

So I have been working pretty intensely on speech with Lily lately--we always work on it, but I wanted to try some new techniques to enhance advancement. In the process, I wrote down the ways that Lily communicated so that we could expand upon what she was already doing and cover bases on areas where we were lacking. I want also to keep track of how far she comes in certain areas based on different therapy types. So, in the process, I discovered how much she is able to tell us and that she has her own special language which we call....Lilyese. So here it is...the beautifully unique language of Lily.

1. Pulling your shirt--I love you. I like you. Play with me.

2. Turning her head away--No thank you.

3. Turning her back on you--I want to play on my own, or I don't want to do what you're doing.

4. Opening her mouth and bringing her right hand to your hand--I'm hungry.

5. Reaching out to her cup--I'm thirsty.

6. Turning toward you and scooting into your space--I want your attention, or I want the food, toy etc. that you have.

7. Curing into a ball on the floor (especially with her hand on her forehead).--I'm sleepy.

8. Grabbing at your legs and leaning her head against your leg or arm.--Hold me.

9. Throwing herself back or to the side--I have a need I cannot express or you're meeting the wrong need.

10. Holding both hands behind back while playing or eating.--My sensory system is overwhelmed.

11. Pulling blanket over head--I'm tired or overwhelmed.

12. uh-huh--Yes.

13. Laughing after you ask her a question--Yes.


She's also using the ipad a lot more with a new program. In fact, I was wiping her nose when she reached out and hit the ALL DONE button. So, I stopped...I want her to see how powerful those buttons are!!!!

A Better Day

Lily seems to be feeling a little bit better today. She is eating a little bit and I'm even getting a few laughs again. She is still having a lot of diarrhea and is not putting out as many wet diapers as I would like, so I keep feeding her peanut butter so she'll drink. :) I got up and got a lot of tasks done that were weighing on me, and I feel so much better!! Seizures slowing down and so the world is spinning at a much reduced pace!! I'm doing interviews this week for a new mommy's helper. We've had Angela helping us for over a year, but her husband is military and has to transfer. We'll be sad to see her go. I'm also trying to confirm Lily's MRI~~will probably be January 25th, but I need to confirm. I really want to see a reduction in the tumors. We're also waiting on blood levels...Lily has had a big growth spurt and she has also stopped trying to crawl (she usually stops advancing when she's sick), but I'm wondering if Afinitor needs to go up? I'll update as I find out.

Reduced to Tears

I'm so exhausted. This cold has finally taken all of Lily's energy and mine. She won't eat; she's crying a lot; seizures are on attack. If I had a basket of what a mommy can handle, having a child with TSC makes that basket already 3/4 full, so a cold, an ear infection, all can just weigh you down so heavy. With my husband gone for two weeks, I am doing all of the lifting...34 wiggly pounds up and down the stairs and my back is killing me. If she would cling on to me, I could prop her on my hip, but she doesn't. I have good days and bad days like any mom, but sometimes feel alone in having someone understand that a cold for Lily is different. If I can't get her to eat, how will I get the 11 pills down in the morning? She can't cough and so she gags and gags and almost lost her seizure meds this morning.  If her fever spikes, seizures run rampant. She's also still like a baby and doesn't understand, and so she cries and cries and cries. She's also having diarrhea from the antibiotic that is for her ear infection so blankets, clothes, everything keeps getting poop on it. Maybe I should just keep the plastic gloves on. Ok, that's funny. I had a good cry. I vented. Now, to pick myself back up and keep on moving forward.

Foggy Frosty Days

I love winter mornings that look like this!!

Caught a Cold

So we went to the Dr to get rid of the ear infection and Lily caught a cold. Poor girl was up a lot last night, mostly because she needed to cough. Her fever was 101.1 but dropped quickly with advil. She and I are in great spirits though. She's a tough girl!!!

Otra Vez

Lily has another (or the same) ear infection. This time we'll do oral antibiotics. Crossing fingers!

Rough Few Days

So Lily's seizures were very slowly starting to increase, so once we were sure it wasn't just a fluke of a few off days, we called and we upped the Trileptal. Well, it's hard to know if it's the seizure med bump or something else (there are always so many variables), but Lily has been miserable, crying a lot, and not wanting to eat. Advil helps a tiny bit, but I just wish I knew what it was. Maybe her ears again? Maybe it's the Trileptal? Maybe it's the bump in seizures? Maybe it's a uti? I'll call the doctor Monday morning, and we'll start the process of elimination. Until then, pass the coffee.

Seattle Center & King Tut

We went to the King Tut exhibit at the Pacific Science Center. This sounds fun, but it was actually torture. Us trying to navigate in the pitch-black, overly-crowded room with a very large heavy stroller, an anxious mom, and a blind guy was comical. Later. Later it was comical. We should have stayed outside by the needle! LOL See the duck photo below...they kept trying to eat Lily's crackers. Snack panhandlers!! They were aggressive little birds! By the end of the snack we had two ducks on one side and a pigeon on the other. We were surrounded....so we caved and gave them a few crackers on our way to Tut. Lily's favorite part was definitely the Christmas train in the Armory at the Seattle Center!

New Years Day BBQ

We find home with friends to be one of our favorite things to do, so having a barbecue with Nathan and Diane and their two awesome kiddos seemed a good way to start 2013. Lily thought Ellery was hysterical and loved watching her! Seizures are lasting a bit long and are also a little stronger so we'll be bumping some seizure meds. Otherwise, Lily is doing well on her new schedule!