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!