Ahh....summer

We are full speed ahead and loving summer! Over the past several days, David ran a marathon, Lauren lost her other front tooth, Jacob has won the hearts of the pool staff, and Taylor is sleeping well again!

We had a great week-end of sun and fun. The big kids and I spent all afternoon on Friday at the beach club and they had a blast - playing in the sand, jumping in the water and re-connecting with old friends. Taylor and David napped at home - so a great time was had by all. Saturday morning I packed up the big kids and took them downtown to cheer on David at the Seattle Rock-n-Roll Marathon. It was a bit crazy - 25,000 runners and lots of spectators, bands and cheerleader - but I think it's great for the kids to see their active dad. As lifelong runners, we both love for them to see people of all shapes and sizes focusing on fitness. They cheered loud for daddy at the 14 mile mark and the finish. It was quite exciting - David ran his personal best time and qualified for the Boston Marathon - quite an achievement and particularly amazing given everything he juggles. We are so proud!

We went to the pool Saturday afternoon and the big kids swam for 4 hours (!) and Taylor joined us after her (and David's) nap. She enjoyed splashing in the kiddy pool and it was great to see her having fun. David took the big kids to a strawberry festival on Sunday and we capped off the week-end with more swimming and bike riding. We love, love summer.

This week, Lauren has a tennis/golf/swim camp and Jacob has swimming lessons. They both love the activity. Jacob is a hit at the pool - all the girl swim teachers (high-school age) say "hi Jacob" everytime they see him. Somehow he is quite the ladies man. Today he had a playdate with a little girl from his preschool - she set up her room with her big brother's legos and a lightsaber to convince him to come over. As usual, he had a great time. Lauren also has had several playdates with her girlfriends and is loving her free time after the structure of kindergarten. She is going to a reading coach a few times a week and we're working with her on a few skills to help her get ready for first grade. All of the activity has resulted in worn-out kids at times. Sometimes we want to send them away for the summer, but most of the time it is hysterical. Yesterday I gave them both a time out for arguing and told them to "stay put and not make a peep" - as I was going down the stairs I hear Jacob say "peep, peep" quietly. Little stinker...Today Lauren had a bit of a meltdown and was sent to her room this morning. All of a sudden I hear "mom!, mom!" and she had literally lost her front tooth when blowing her nose. Her big, front tooth had been hanging by a thread for days - who knew you could literally blow your tooth out? She was a bit freaked out, but then excited - we've been telling her how excited we were for her to lose her two front teeth - she looks adorable. She is a bit freaked out by the tooth fairy though, so I will be sleeping with her tonight to protect her from the fairy and ensure she gets her fair prize.

Taylor continues to be a trooper. She is working hard during her early morning therapy sessions and still making progress. We're waiting for the next big breakthrough and trying to be patient as her second birthday approaches (August 22). She is delighting in seeing the big kids more now that school is out and they continue to make her laugh so hard. We're continuing to increase her seizure medication - she's 3/4 of the way to the desired dose and adjusting well. She is more sleepy than normal and has returned to taking a morning nap. Otherwise, she seems to be adjusting pretty well.

That's all for now!

Father's Day

Happy Belated Father's Day! My own dad was in Dallas helping my sister and her family move their house over the week-end. He and my mom have helped move us so many times - they are pro's and sweethearts for helping. I was quite pregnant for two of our moves (bad timing on the move part) and I'll always be thankful for their help - amongst many other things. In any case, I am thankful everyday for my wonderful dad!

And David, who deserves a great Father's Day any more than David? The kids and I tried to make it wonderful. All he wanted was to take a nap and watch the US Open, so the bar wasn't very high. We had a great week-end with the kids, enjoying the start of summer. On Sunday, we went for bike rides, played outside, watched a lot of US Open golf, and David got his nap. The kids were super sweet and shared art projects and their proud choice of the perfect golf shirt and shorts. They love him so much - probably the greatest gift of all. David's family came over for dinner and the big kids played in the backyard and had a blast. Taylor was a good sport and enjoyed the company.

Taylor was a bit tired and grumpy this week-end - we increased her dose again of the anti-seizure medication and we're beginning to see a pattern. With each increase, it takes about 3-4 days for her to settle in. We're half-way to the ideal dose, so it's good to see her continue to adjust. We think she's also struggling with "normal" growing pains - she seems to be teething and was very unhappy for awhile last night (awhile defined as 3-6am - yawn). David was a trooper and took the bulk of it - he finally threw in the towell and turned on Barney for her while he napped on the couch with her. We'll be excited for her to have more teeth - she still just has the two little ones on the bottom - we may need to look into dentures at some point...I kid...

All is well - the big kids are taking swim lessons this week (or as Lauren says - "stroke lessons, I can swim, mom") and loving it. They've been playing outside and enjoying their down time in the morning. Summer vacation is awesome - we want them to have a blast.

Taylor's last day of school!

Here are pictures of Taylor today at her last day of school.

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.

Epilepsy diagnosis

Well, the past week has been a dip in our rollar coaster of an experience. We had our neurology appointment on Thursday and did not receive good news about Taylor's seizure. Dr. Vlucek gave a very long-winded description of what they were looking for on her EEG test, combined with her brain malformation and initial seizure, ultimately led to a recommendation to put Taylor on anti-seizure medication. She was officially diagnosed with epilepsy - which we learned simply means that she "has the tendency for recurring seizures". We've now become acquainted with another condition we'd rather know nothing about.

To his credit, Dr. Vlucek spent nearly 90 minutes with us, educating us and walking us through his thought process. While her initial seizure was very quick, he said they are not progressive and just because the first one was minor, doesn't mean that future seizures will also be minor, or progress over time. Her EEG test indicated that she is highly susceptible to seizures in both hemispheres of her brain. They term this "multiple onset of partial seizures". He compared the spikes of her brain activity on the EEG to dominoes - they might stand up perfectly, but if the right combination falls, it can be very dangerous for her.

He said one to several seizures are typically OK, but recommended medication for Taylor to prevent future seizures. The goal of the medication is no seizures and no side effects. We've learned this can be a tricky balance and it may take awhile to get the perfect medicine cocktail for her. He said they can perfect it in about 75% of patients. Others either have ongoing seizures or side effects. The side effects aren't life-threatening, but can impact quality of life - namely excessive grogginess and irritability. We'd heard horror stories about how challenging the medication can be, but it sounds like the drug companies have made great progress and once you find the right medication, it often works really well. This was a relief - we were really hoping to avoid medication for Taylor. You just don't want to mess with her precious personality and tenacious work ethic, but we were convinced this is the right move. We will seek a second opinion, but it will probably take us months to get in the door of another neurologist and we'll start the medicine in the meantime.

Similar to the allergies, this is another potentially life-threatening condition, that -should- be managable with precaution and medication. Apparently "seizures can beget seizures", so the goal is to stop them quickly before the brain becomes conditioned to become seizure-prone. A short seizure is not terrible, but a long seizure can cause brain dysfunction, or if severe, death. We were told to call 911 if a seizure lasts 5 minutes (we'll probably jump the gun much earlier) - apparently it doesn't get dangerous until the 15 minute mark and few go that long (and paramedics can stop them). Typically a seizure needs to last 60 minutes to cause death. We had questions about flying or other remote possibilities where you might not be able to receive medical care that quickly and there is an option - dyestat- that is a rectal emergency medication that you can take with you if you're flying over the ocean for example. He said the plane was more likely to crash than to have a life-threatening seizure on the plane, but it does happen so you can be prepared.

Taylor had a tonic seizure, which means she stiffened versus a convulsive seizure. He told us to look for similar stiffening, eye rolling or odd eye movement, a vacant stare, or a weird cry that lasts a few minutes before falling asleep. If she has a seizure, we're supposed to lay her on her side and not put anything in her mouth. She will take a drug called Kepra, which has been FDA approved and over 500,000 kids have used. He said 2-3% of kids have grogginess with it and 5% have irritability/sleeping issues. If this is the case, we'll adjust her dose or try a different medication. They are slowly upping her dose over the course of three weeks to help her ease into it. She had her first dose today because we couldn't find a pharmacy that carried it and it took a few days to get her dosage. It didn't seem to affect her and we are really praying that she continues to adjust.

He said she might outgrow the seizures, although with her brain condition it wasn't highly likely since she's shown a disposition for seizures. If she doesn't have one for 1-2 years, they'll do another EEG and see if there is improvement.

The past few days have been hard - we just really didn't want her to have anything else to deal with, but thankfully this should be controllable. After the first tough day, we're rolling with it and hoping for the best - it falls in the "what choice do we have" category and we have to trust that it will be fine and pray for the best-case scenario - no seizures and no side effects. The next few weeks will be anxious as we increase her dosage (twice a day), so send her a few extra prayers.

Meanwhile, we had a nice week-end with the kids and saw several friends. Life, as usual, marches on and we strive to keep things normal for all of us. The past two weeks have been absolutely nutty with all of the doctor appointments and end-of-school year business. We're really craving a "normal" busy week. Thankfully, the sun has shone and Taylor continues to smile and make improvement with her therapy. We're hoping this latest bump doesn't slow us down again - we just got her ears working!