Sunshine again

Sometimes I have very lame excuses on why I haven't written in awhile. Tonight I can honestly say that I didn't want to write the past week or so because I was a bit in the dumps. Or, as I would call the kids - I've been a "Grumpy Gus." Of course we've been plowing ahead - it has been an absolutely nutty few weeks of doctor appointments, end-of-school year activities, crazy times at work, and moments of fun. David and I both felt like a bit of a cloud was following us and it could be summed up in our concern for Taylor.

After the neurology appointment, we've started Taylor on an anti-seizure medication called Keppra. Anti-seizure medicine used to be really tough on people with lots of side effects. Thankfully, the medicine is much better now and we're taking confidence in our doctor, who claims 75% of kids with seizure can find medication that stops seizures with no side effects. Before we'd gotten over the initial shock that Taylor had epilepsy (rather than a random one-off seizure), we started the Keppra. We essentially build up her dose over several weeks to help her adjust to the medicine. The most common side effects are grogginess and irritability. There are, of course, worse things. But, for me, watching her go through several days of adjustment, both more tired and cranky (for her anyway) than normal has been incredibly hard. Mostly, we feel so badly for Taylor and want her life to get infinitely easier. It has been tough to see our Taylor, who all along we've been able to cherish her smiles, eyes that light up, and warm nature, not seem like Taylor. This has probably been my biggest valley since we started her therapy last year - we know she will either adjust to this medicine or we'll try something else, but we want this to be as easy as possible for her.

Thankfully, after a few tough days/weeks, she seems like herself again. We've only worked up to about half a dose (taken twice a day), but we're encouraged that she seems to be adapting. We're reminded again how precious each smile is, how special it is to see her laugh, and while we want so much more for her - we've been given so much already. As long as Taylor can be Taylor, we can deal with everything else.

The funk has broken and we're happy again, with our positive outlook returned. The big kids have had a ton of fun as their school year has wound down and summer vacation started this week. I was also feeling overwhelmed with the logistics of scheduling - with the big kids out of school, I wasn't sure how well we would juggle Taylor's therapy without burdening them. Susan gave us a big gift and offered to come to our house Monday, Wednesday and Friday mornings to work with Taylor. She shows up at 7am and leaves at 9am. David and I tag team while we get ready for work, feed the big kids, and make sure that one of us is with Taylor. It makes the morning a bit hectic, but we're so thankful that the rest of the day can just be about fun. And Taylor is freshest in the morning and we can hold off her mornig medicine until after therapy, so her therapy sessions have been going well. Our summer scheduling seems infinitely easier now.

So, life is good and we're counting our blessings. Today was Taylor's last day of school at the EEU and I was really amazed at the progress she has made in the last year. I remember her first day in September - she couldn't sit, her eyes didn't focus well, she didn't play with toys, and couldn't sit unassisted at snack time. Now, she can play (a favorite new game is practicing patty-cake - she's finally realizing her hands can be fun!), reach for toys, enjoy snack time, and she even rode a little bike at play time. She also can sit like a big girl at circle time. Each class the teacher brings out two stuffed animals at circle time and chooses one kid to pick which stuffed animal will sing the bye-bye song. Today, she chose Taylor and gave her the choice of a stuffed pig or cow. She very deliberately reached out and chose the pig and smiled so big. This is such a huge accomplishment for her - she connected with her teacher, heard the question and responded by reaching out (another big win) and grabbing the pig (using those hands!). When the teacher pulled the pig away to visit another kid, Taylor kind of whined - which is also very age-appropriate - she wasn't done with her turn yet! It's great to see glimpses of age-appropriate behavior, see her finding her voice, and able to participate. We are so proud of her first year of school and the progress she has made.