Baby Dedication!

Today was Kevin-Carlos' Baby Dedication! Cassi was even able to come all the way from Kentucky!

Owen had to get involved, Carlitos is his baby you know!

The party had a Fiesta theme, so there was a pinata for the kids.

The pinata proved to be made of some pretty tough stuff, so we eventually had to call in the big kids for help.

They finally broke through!

Owen was thrilled to find a Lego toy just for him in the pile of candy, since he can't have any of the candy. The other kids decided that this was an even better return on their investment than Halloween. They didn't have to walk as far and didn't have to knock on a single door and still came home with a huge bag of candy.

Uncle Ray and cousin Hudson

I can't believe how big Carlitos has gotten. Four months ago he was a 3lb 12oz preemie and now he's over 13lbs!

We tried to get a picture of Grandma and Grandpa with all the grandkids and great-grandkids (Ray's daughter Alex was the only one missing). Have you ever tried to get 12 kids all cooperating for one picture? Let's just say it took a few tries and we finally had to bring in Hudson's mommy to help.

Don't worry, there was a real photographer too. I'm sure some of her pictures are better than mine.

I had to get a Barkley picture because he's just so handsome! It was so nice to see everyone all together today to celebrate Carlitos' dedication!

Chores!

My camera isn't cooperating, so you get pictures of Brenna at the beach instead of the kids doing chores.

I've posted BEFORE about why I make my kids do chores, but I've never really gotten around to how we do chores. For many years now we've had a chore system that worked wonderfully. It was easy to remember, stayed the same long enough for the kids to become proficient, and changed enough that no one got too bored. We divided up the main things that needed done on a daily basis and had each child over 7 or 8 be in charge of one area (dishes, laundry, floors, bathrooms) for a month. Anything else that needed done was done by me or by all of us on the weekends. We used this system with a few minor changes for about 10 years.

This year, it stopped working. I had one child who wasn't quite old enough to do an area on her own, but old enough to need a job, one child with a completely irregular schedule, and very little time to do things on my own due to the demands of Owen's new diet. We hobbled through this year making a few small changes and trying to think of something easy and enforceable that would work as well as our previous system. I finally decided that we needed to break things up more and just keep a very detailed chart so I could remember who was in charge of what and when. So, I made lists of all the things that need done and approximately how often and assigned each child age appropriate chores which rotated by days of the week.

Now, the most important part of any chore system is accountability. If the chores aren't done it doesn't matter how great the system is. I have problems keeping track of things without visual aids, so I made laminated charts with a magnetic back and have them on the refrigerator with a dry erase marker to mark when I've inspected each chore. We started the new system in August so that we'd have a month before school starts to get the hang of it and make any necessary changes.

Once I can get my camera cooperating again I'll post pictures of the actual charts. So far, it's going pretty well. We had a few kids gone at various times this weekend and had to fill in for them, but that worked out well. I have one child who has extreme difficulties with change who is having a few problems with not having the same chore every day and with having to follow someone else who may not do things the same way he does, but I think that will settle down. I've purposely given Devon chores that don't need to be done on a specific day and time so she can make them work around her school/work schedule. I'm hoping that we can have most of the bugs worked out and some things that haven't gotten done around the house under control by September. that way we can start school fresh and organized.

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.

Switching to Swedish {Owen's Story Part 5}

Finally! Part five of Owen's story. You can read the first four parts by following the links below.

Part One

Part Two

Part Three

Part Four

So, at this point we were headed down to Seattle for a video EEG. Since Brenna was still nursing, she came along too. We were told to expect to stay for 3-4 days. We got a hotel room in Seattle Sunday night so we didn't have to get Owen up too early for his 8:00AM check in. We already knew that lack of sleep was a sure fire seizure trigger and while the hospital wanted to get a seizure on record, they didn't want it happening before we could get him all hooked up. Although Rod and I were feeling more comfortable with our new hospital than the old one, we were still very much on edge.

We arrived at Swedish and checked in downstairs and then headed up to the pediatric ward. The nurses were so nice about settling us in. Swedish has all neurology patients bring their own medications because it is extremely important not to change brands. So, they had us bring our meds from home and then the nurses take them and check them in with the pharmacy. Due to our previous experience at our old hospital, Rod and I chose to keep a dose of rescue meds on us. We just tucked one package in our bags and didn't hand them over. I was not going to be in a position where Owen was seizing and  no one was bringing me the medication soon enough EVER again. The EEG tech came in and started hooking up all the probes. First they measure his head and mark red X's in all the right spots. Then they clean the spots with a special cleaner and apply the disks with stuff that looks like toothpaste, but isn't. Next they put gauze pads soaked in the most vile smelling adhesive known to mankind and place them over the disks. Then they use a little air/light gun to harden the adhesive. The whole process takes about an hour and a half. Finally they give him a little hat and hook up his monitoring pack.

From this point on Owen is stuck in his room. The wires reach far enough that he can sit on the window seat and reach the bathroom, but that's about it. Although last time our neighbor did manage to make it a few steps into the hallway before he disconnected his. A few minutes later the nurse came in with Owen's rescue medication and told us that after reviewing his chart they had decided the medication needed to be kept in his room. I was starting to feel a little guilty about keeping the dose I already had with me secret. She also put in an I.V. so they would have another way to give even more medication if necessary. Once she left the room, Rod and I both let out a big sigh of relief! We really felt like we were in the right place and we hadn't even met the new neurologist yet!

So, we all hung out in Owen's room for the next few days. The hospital was kind enough to let me keep Brenna in the room since she was still nursing and largely immobile. Rod ended up staying too because it was pretty hard for me too keep Owen hooked up to all of his wires and also take care of Brenna. It was totally against policy for all of us to be there around the clock, but they were really nice about it. The second day, the doctor came in to meet us and talk about the results they had at that point. This is where it gets really hard. We knew Owen was having the "big" seizures. We were wondering about some of the twitching and jerking he was doing at night and we were beginning to suspect that some of the tripping and falling he was doing was actually seizure activity, but we didn't know for sure.  The doctor confirmed all of our fears and more! It turns out that Owen NEVER had normal brain activity. He had constant spike wave patterns that moved over every area of his brain. Not a single part of his brain was unaffected. Most of the time the activity didn't turn into a true seizure because it didn't stay in one place long enough. He did manage to have several instances of true seizure during the day however and nearly non-stop seizures all night long. That was a lot more than we had been expecting to hear. The doctor told us she had no idea how Owen was functioning (long pause) as well as he was.

We ended up in the hospital for 6 days. Owen did finally have one of his (newly named) "big" seizures, as opposed to the little ones he was apparently having all the time. Our new neurologist told us that brain surgery might still be an option, but only as an absolute last resort to get the large seizures under control since the two we had on record did originate from the same spot, but that we would have to go into it knowing that it wouldn't solve the whole problem. We removed one of his medications that didn't seem to be helping and started a new medication that did help bring the "big" seizures to every 6-10 weeks instead of every 3-14 days. She also talked to us about the Ketogenic Diet. As soon as she mentioned it, I knew we would be trying it. We decided it wasn't going to work at that time though because of all the eating issues we were still dealing with. That was actually the only issue we had during our hospital stay. Owen ended up eating chicken strips and stuff we brought from home the whole 6 days we were there, because he refused all the other hospital food.
Saturday, we got Owen all unhooked, a pretty long process. I don't think all the gunk was actually out of his hair for a week. Owen had been telling us all week that the probes and wires were hurting him. We kept telling him that they didn't hurt, they just felt funny. Well, when they pulled everything off he had open, raw, oozing wounds. It seems that in addition to tape and plastic, Owen is allergic to the EEG adhesive. Unfortunately, frequent EEG's are pretty much unavoidable with Owen's disorder. Now, they are trying to not do any longer than 24 hours, he gets red from that, but only had a few open wounds. There are a few places where his hair has never grown back.
 As soon as I got home I ordered the Charlie Foundation Starter Kit and This Book, and This Book. We started testing some of the recipes (we never gave full Ketogenic meals since that can be dangerous) and making small changes to Owen's favorite meals to bring them slowly, slowly closer to something acceptable on the Ketogenic Diet.
About 6 months later, Owen's seizures had started coming closer together again and we had him eating a greater variety of food, so we told the doctor we were ready to try the diet. Two months later, we entered the hospital again for our diet initiation. It's now been over a year since we've called an ambulance and over 7 months since his last seizure. His EEG in March still showed the abnormal brain waves, but no actual seizures! We made a few changes to medication and the diet and he goes in on Monday to see if we've managed normal brain activity yet. Wish us luck !

We Are the Champions!

Here's another preview of my upcoming post about our big hospital switch a year and a half ago. We Are the Champions by Queen is Owen's favorite song and there really isn't a much more appropriate song to be his theme song. Here he's singing it to baby Brenna (six months old at the time) in his hospital room during his 6 day video EEG.

[ Sorry about the bad quality, this is off my phone since I lost the good video from the camera]

Driver's Ed- Take Two!

This blog post will be accompanied by completely unrelated pictures as the child I will be discussing has asked me NOT to put pictures of him on the blog. He does make exceptions for group shots and special occasions, but doesn't consider this post to be worthy.

We just graduated our second child from driver's ed! Connor had his last drive last week and would have passed if it had been the actual drive test. The instructor wants him to work on parallel parking and backing around a corner before his test, but he would have scraped by with a passing score on this drive. Today, he had his final class where they took the written test. Connor had the highest score in the class! By 8 points. I'm not saying this to brag, I'm saying it justify the fact that we haven't totally screwed our kids up with our relaxed homeschooling method. When they need to they are perfectly capable of functioning in a classroom setting and even passing tests with flying colors.

His next step is to complete 50 hours of driving with a driver who has been licensed for at least 5 years. 10 of those hours must be at night. Then he just has to wait until his 16th birthday and he can be officially licensed to drive.

Can I just say that teaching a child to drive isn't something that gets easier the second time around? A long time ago I was talking to my Stepdad about skydiving. I asked if it was hardest to jump out of a plane the very first time. He told me it was actually the second time that was the hardest, because you already know what to expect. That's sort of how I feel about teaching the kids to drive. Connor is probably a much safer driver than Devon was in the beginning just due to personality type. Devon is much more "fly by the seat of your pants" than Connor is. She also tends to be a little overconfident at times. Connor is a very "type A, everything in the proper order" type of kid. But giving your child control of a large hunk of metal that is capable of traveling at speeds of over 80MPH (I'm not talking about cars going any faster than that, I'm just not) quite easily is a little unnerving. Connor obviously is a very conscientious driver and I'm sure everything will be fine, but I admit that I let Rod do all the beginning lessons. 

Hopefully it does get easier eventually since we have 5 more kids expecting to learn to drive someday! We did count out though and it looks like Devon will have had her license long enough to be the responsible adult by the time Duncan can get his learner's permit. That way she can teach him.

Happy Birthday Brenna!

 Brenna is two today!  Because her birthday fell in the middle of the week, we actually celebrated last Saturday. Since we had plans to pick up a friend from the airport and since we wanted to see our precious little Grandson Carlitos, we decided to take everyone to the zoo for Brenna's birthday.  After several nice, summery days it decided to start raining again, but we didn't let that stop us (at least not at first).

Brenna really wanted to take this little spotted mini donkey home with us. Other than that, the family farm area of the zoo was not much different than being at home.

I think the flamingos were Brenna's favorite. She just kept saying "Pink bird! pink bird", over and over pointing at each and every separate bird.

Cameron in front of the cheetah display. Unfortunately my cheetah pictures didn't turn out.

The zoo has these little footprints on the ground leading to certain attractions. Brenna was fascinated by them and ended up walking on as many of them as possible.

There was a speed check station near the cheetah display so the kids could see if they are as fast as a cheetah.

Brenna runs at about 2-3 MPH. Owen made it all the way to 4 MPH.

Morgan was pretty steady at 4  MPH, but did get up to 6 for a short time.

Duncan and Cameron broke the machine or something since it wouldn't read their speeds.

This bird was convinced that he'd get fish if he just acted like a penguin.

We took the little kids for a ride on the carousel, but Brenna decided she didn't want to go on it after all. Owen wanted to try riding on the seat, but then he expected another ride on a horse and was disappointed that he didn't get one.

Finally, the rain got too heavy for even us Pacific NW natives and we wrapped it up and went to visit Kristi, Simon, and Carlitos. Since it was Brenna's birthday, we let her choose something from the gift shop. She chose a super, soft stuffed cheetah, although she kept calling it a tiger.
Today, she also got a stuffed monkey that Devon sneaked off and bought while we were on the carousel, several pairs of earrings since she can change hers out now (and since she lost one of hers), a snake in a basket toy that she thinks is hilarious, and a box of cinnamon rolls for obvious Brenna reasons.