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!!!