Thursday, July 31, 2014


Rod had a small job to do all the way on Whidbey Island today, so we decided to take the whole family and play at the beach.
Owen was so excited about going to the beach that he actually cried when we went to Daddy's job site first.
Bitty Miss Brenna loved the sand and the rocks and shells, but wouldn't put more than a toe into the water.
Cameron didn't go in either.
Everyone else did though! Well except for me, I don't do cold water.
Morgan collected rocks and shells and built a store.

Wednesday, July 30, 2014

Owen Update {July 2014}

I talked to the neurology nurse today. Owen's EEG was pretty much the same as last time. That means that the diet increase hasn't helped the ESES. It also means that the zonisimide wean hasn't made anything worse, which is good. Because Owen is doing so well clinically and not having all the cognitive issues associated with ESES, the doctor wants to try increasing his Onfi before starting Diazepam treatment. The Diazepam treatments can have a pretty devastating effect on cognitive and motor issues themselves, so we're being cautious about starting them.
So, the current plan is to double the Onfi ( gearing up for another insurance battle here since Onfi is brand name and fairly new) and do another EEG in a month. The good news is that they were able to get all of the information needed at the last 2 hour EEG, so we are going to try that again instead of a 24 hour one. It's much easier to keep him occupied for 2 hours than for 24! This time we have a meeting scheduled with the doctor for immediately after the EEG, so we'll get results right away. It kind of feels like we're getting another months reprieve. I'm really not looking forward to the diazepam protocol, so maybe this will work and we won't have to go there yet.

Monday, July 28, 2014

Hot, Hot, Hot!

After a couple of days reprieve, our hot weather is back! Owen got a new wading pool for his birthday, so the little kids have been using it daily. Our house is situated to take advantage of the sun for heating, which is great most of the year, but it means it gets really hot the few weeks of the year we actually have summer. As a result, we've been spending a lot of time outside. Our property has a lot of nice shade trees and a pond, so outside is preferable right now.
We figure we need to take advantage of the weather while we can since most of the year is cool and wet.
While the kids are busy playing in the pool and chasing chickens, I've been planning and prepping for our upcoming school year. We're starting a new chore system in August (I'll post more on this once I have it worked out. We start in a couple of days, so I have to have it ready by then). I plan to have that in place for a month, so we can get used to it, then start school in September.

Saturday, July 26, 2014

New Beads!

Owen's latest Beads of Courage arrived today!!! I haven't ordered his beads in over 3 months, so this batch included a couple of overnight hospital visits, a few EEGs, a whole bunch of ketogenic diet compliance, and our one year Ambulance Free bead.

This daisy bead represents one year without an ambulance call. One whole year! Yes, we celebrate some interesting anniversaries around here. For almost two years we had to call an ambulance for life-threatening seizures at least every other month. At the very worst time, we were calling 3 times a week.
Owen also earned a 100 bead this time! For every 100 hundred beads earned the child gets a special fimo bead. Owen had 4 with his first back up bead order and just got his first one since we've been on the program. The  courage cards and beads are for "special" events where the child has to show extra courage. Owen earned these for his diet changes and his brand new ESES diagnosis.
In addition, he got several colored beads for his hospital stays, EEGs, "pokes", and clinic visits. I can't even begin to tell you how happy these beads make him. It is such a great way of showing his accomplishments.
Brenna isn't about to be left out of anything, so she had to try on Owen's beads too.

Thursday, July 24, 2014

Mr. Nobody Strikes Again!

Mr. Nobody and his little sister Not Me, are far too frequent guests at our house.  This time Mr. Nobody decided to take up knitting. It only took me an hour to untangle everything! Luckily only a couple of stitches were dropped off the needles, it was mainly just undoing a lot of knots.

Wednesday, July 23, 2014

Two Birds With One Stone!

Getting his head marked for EEG placement
Some people are naturally very efficient. They always have a plan and are great at sticking to it. Their houses are always organized and they never forget to feed a child because they can't keep track of who is home and who isn't. I'm NOT one of those people. When you have a larger than typical family, however, learning efficiency is vital. I have had to learn how to plan things out and prepare things in advance. Sometime I have no choice but to be two places at once and to meet the needs of two children at once. This requires a lot of planning and judicious tag-teaming. If you are looking at the pictures you might be wondering what this has to do with Owen's EEG, well I'm getting to that.
Rod and I both wanted to attend Owen's appointment yesterday, since this EEG is vital to determining which direction to take with his new ESES diagnosis. We weren't sure if we would get to go over the results with the doctor that day or not, but neither of us wanted to miss it if we did (we didn't, so we'll have to wait for the followup visit). The day before the appointment Duncan came home from his cousins house limping a little. He didn't say anything about being hurt and I was busy getting dinner ready, so I ignored it for a while. After dinner, he was still limping so we decided to take a look. He still hadn't told us he was hurting, but after we asked him, he said that he had slipped while playing. I looked at his ankle and the inside was swollen to about double normal size. We put ice on it and had him elevate it and go to bed. The next morning, we got everything ready to head to Seattle and then went to check Duncan. The swelling hadn't gone down at all and there was a big, hard, lump. So, we quickly debated what to do and decided to take him with us. We've had good luck with the ER at Swedish before, and since we were going to be at the hospital anyway, why not kill two birds with one stone?
So, we got to Seattle (after 3 hours) and checked Owen in for his EEG. I stayed with Owen while Rod took Duncan downstairs to the Emergency Department. The ER was particularly busy yesterday, so they got kicked out of their room and got to sit in the hallway instead. They actually got X-rays and saw the nurse pretty quickly, but had to wait over an hour for the doctor to sign off on discharge papers.
The good news is we still hold our record for no broken bones! Seriously 7 kids and never a broken bone. The bad news is that he has a serious contusion(bruise) of the ligament, which is why it was all lumped up. He's supposed to keep it splinted for a while and not put much weight on it, so he has a nice little gel splint and a pair of crutches to use for a while. We're keeping it elevated and icing it several times a day. We were told that it could take several months to a year to heal completely, he shouldn't have to be on crutches anywhere near that long though. This was actually the first time Duncan had ever been to the hospital as a patient, he was even born at home. Owen thought it was great that he wasn't the only patient that day! Duncan and Rod finished up in ER and made it back upstairs just as we were finishing Owen's EEG and removing the probes. Talk about perfect timing! Then we fed Owen his meal, got a chocolate milkshake for Duncan and a snack for Rod, Duncan, and I and headed home.

We left the hospital at 4:20 which would usually be a death sentence for Seattle traffic, but it was pretty smooth. We made it home in 3 hours even with a stop for dinner. Now, I just need to schedule our followup with the doctor to see what our next step will be with Owen's treatment.

Monday, July 21, 2014

Baby Projects!

Now that we've made our big Announcement, I can show you what I've been knitting for the last month. Baby projects go much faster than sweaters for teenage girls made out of sock yarn.
We use cloth diapers and I love wool soakers for over them. I planned to knit a sleep sack for Brenna and never got around to it. It ended up being warm enough when she was born that I probably wouldn't have gotten much use out of it anyway. With this baby due in February, it was the first baby knit on my list.
I had lots of extra yarn left over, so a hat needed to be made. The Aviatrix hat has been on my list for a long time, so I choose that pattern. I really love how this hat fits babies! It just looks so cute on and it keeps their ears warm while staying put nicely. All very important attributes for a hat to have.
Next I decided on socks to keep baby's feet warm. my babies tend to be pretty active, so the chances of kicking feet out the sleep sack are pretty high. I chose the Ribbed Far-Away Baby Socks because I figured the ribbing would help them stay on and fit longer. I gave up knitting socks a long time ago much to the dismay of several of my children because socks take SOOO long to knit. These little worsted weight baby socks are a whole different matter. They only took a couple of days to knit and that's with me not having a lot of knitting time right now.

I have another baby project that just needs buttons and one more project that is still on the needles, so you can see those another time.