Being Lily

Mom came for her July visit, and we took off for our overnight adventure. The views on the drive to Mount Rainier are unbelievable and stopping in at basecamp to shop and watch all of the climbers preparing for their summit attempt was really great!! What totally sucked was our cabin...it was dark, stinky, rotting, had no view, was surrounded by piles of chopped wood and compost brush, and has probably slipped down the mountain and landed in the Nisqually River. We could not sleep there mostly based on the smell and lack of light...when darkness came, it would going to be a sensory deprivation tank! We decided to bail out and explore more of the mountain and head on home. We laughed the whole way home that we just threw our suitcases back in the vehicle and got out of there! We would have been better off sleeping outside!! The next day, we went to Gig Harbor and stopped in at some of the little shops and caught some nice views of a sunny day!

With the end of Spring, I realized that I hadn't really done a comprehensive update in awhile. And I actually use my updates not only to look back and see where we've been, but also I've used it to compare different meds to each other or therapies to see what is working, so as much as this is a blog to inform friends and family, it is also a history that helps us discover what works best and how to hit those "sweet spots" again.

Seizures: So since we found out that Lily's med levels had dropped to half (most likely due to a growth spurt), and we upped her Zonegran, Clobazam, Afinitor (but actually dropped her morning dose of keppra), seizures have been very good and sometimes nonexistent. She's having about one a day that lasts 15 seconds, but we sometimes have a day or two in a row that appear seizure-free.

Surgery: Lily really took longer to recover from the adenoidectomy and fourth set of ear tubes than the doctors' suppositional time--the afinitor slows down the healing process, so it took about a month before we felt like she was really back to feeling 100%, but she is doing great now, and we really hope that this is the last surgery for this issue! Fingers crossed!!

Therapies & School: Lily is doing really well with school, and we absolutely love her teacher!! She's reading stories and answering yes or no questions on the ipad about the story. Still working with numbers, colors, and reading and other big girl stuff. School and PT with the school district is out for summer, but her teacher will come once a month this summer to keep Lily on track and then her and I will do a few sessions as well. Lily is still doing horseback riding and doing very well with it!! In fact, this last session was by far her best ride ever! It is making her so much stronger! We start with a new speech therapist on Monday; I'm really excited about him because he specializes in children that are not speaking yet...allowing Lily to communicate in whatever way she is capable of now. And we are also starting with extra physical therapy with Lily to further help her strengthen her body to walk.

Development: Lily is getting around like a champ! She's rolling, scooting, bunny hopping on her knees, diving, and sometimes she tries paddling to get around the floor. The paddling is so funny. She's sits on the floor with her feet straight out in front of her and paddles both arms like they're oars in a kayak. Granted, she doesn't get anywhere (turns out she's not a boat), but it's great to see her making ANY effort to explore. She's working hard and doing much better at drinking through a sippy cup with a smaller mouth (long-term goal is a straw and of course a regular cup). She is also doing better with communication...using the iPad, signing happy, and waving bye bye. She is also saying dada and mama. When she says dada it's in a sweet, sing-song daaaaaaaaahhh daaaaaaaaahhh. When she says mama, it's full of anxiety and nearing a psychotic break. MAMAMAMAMAMAMA. Then I ask her why my name sounds like a panic attack, and she just has a laugh or throws herself back and continues to panic. Sometimes I have to bite my lip in an effort not to laugh because that will really make her mad!!

Character: Lily is still the sweetest girl!! She loves to be called a fairy princess---so funny because I avoided the princess term for so long...you know just in case there is a Veruca Salt effect. She loves to be told she is pretty and that she is sweet and kind and smart. She will also lovingly stare at you and sing in a tiny voice that just melts hearts. And she also has a strong-willed opinion on certain things and has an enormous amount of gumption!! I love that she will protest strongly things that she doesn't want. I would, however, like it to be in a more productive way than throwing yourself back, screaming, and kicking the crap out of you!! But it's baby steps :)

So, all in all, we've had some huge steps forward and have seen even faster advancements with the increased Afinitor. It's almost July which is when we do all of Lily's yearly exams...kidneys, brain MRI, dentist, opthamologist, and she will also have labs soon to re-check levels. Other than that, we are in a sweet spot right now that I hope continues. It seems that the bigger she gets, the longer the sweet spots...a light at the end of a very long tunnel!!