Wednesday, July 31, 2013

Duncan's Bee Sting

 We had a doctor's appointment today for someone other than Owen. Duncan was playing at his cousin's house on Monday and stepped on a bee. They got the stinger out and when I came to pick him up he was lying on the couch with his foot elevated and an ice pack on it. We gave him some Benadryl and figured it would be fine in the morning. It only looked like a normal bee sting. Yesterday, he was still limping around the house, so I checked it again and there was a swollen spot about 1'' by 2". I thought maybe I hadn't looked closely enough at it the day before. It was a little worse than expected, but not bad still.  Today, he was still limping. I checked it again and his whole foot was swollen! The toes were like little sausages, the whole foot was red. I gave him some more Benadryl and called the doctor. The swelling went down a little and he said it itched more than hurt, so the doctor prescribed prednizone for a few days and called in an antibiotic to pick up if it doesn't help the swelling in a couple of days. At this point we aren't assuming he has an infection, but it's a possibility. They aren't considering it an allergic reaction because of the delay in the swelling, but that's a possibility too. Connor is allergic and already has an epi pen, so we have one on hand if Duncan gets stung again and has a worse reaction. He's supposed to go on a trip with Grandma and Grandpa this weekend, so hopefully he'll be feeling better soon!

How's the Diet Going? Owen's Reaction

Daddy can I have a real pancake?
No, you get your special magic pancake.
But, I am a real boy

(playing with stuffed animals)
Would you like to have white bread or brown bread?
Owen would like any bread

Brenna likes apples.
Brenna likes all food.
I like apples. Can't I have more apples?

Monday, July 29, 2013

Duncan the Lego Maniac

 We interrupt this Owenfest for a post about one of my other children. Yes, I do have other children. A whole bunch of them actually.
 Duncan has been spending several days constructing this Lego castle.

 He took the pictures all by himself too.

I'm pretty sure this is the jail
I have to confess, I don't remember what each of the buildings are but they each have a specific purpose.

 I know there is a gatehouse, a stable, a forge, a jail, a kitchen, the main keep, and soldiers quarters.

 I just can't remember which building is which.
 See what a good job he did cropping out the rest of the messy playroom!
 This is the gate. The kingdom was united by marriage so there is one flag for the prince and one for the princess.
 I think the catapult is pretty self explanatory.
 I'm also pretty sure this guy is the blacksmith. Duncan has had a fascination with blacksmithing for a long time. A few years ago he tried to apprentice himself to the blacksmith at Camlann.
 I love it when my kids make their own creations out of Legos instead of just following the instructions. When I was a child I was always frustrated by Lego that were supposed to be built a certain way. It sort of defeats the whole purpose. I'm glad some of my children agree.

Sunday, July 28, 2013

Rough Day!

 Today was one of those days.You know the kind. Nothing really major happened, just small things all day long. Our routine right now is based on food. Wake up, nurse Brenna, give Owen his meds, then take a little break to get the little ones diapers and clean clothes. Then make Owen's breakfast, make everyone else's breakfast, make a new recipe so Owen can have apples. Brief interlude for a shower and to dress myself, then back to the kitchen to make Owen's lunch, everyone else's lunch, then nurse Brenna and put her down for a nap. Then I have about an hour to do something( today was laundry, we're still catching up from being gone), and it's time for Owen's afternoon meal. The other kids usually want a snack then, so I have to try to find them something Owen doesn't like or get them to hide while they eat. Then another little break before I make 2 dinners.Then it's bedtime routine, nurse Brenna, put her to bed, and do Owen's bedtime med yogurt. Around 4:00pm Rod noted that one or the other of us had been in the kitchen ALL day long. Rod has 5 days straight of working all day starting tomorrow, so I guess I know where I'll be all week.
 Once we get used to the new diet, I know things will level out and become easier, but right now it's more than a little overwhelming. Today nothing went right. Owen woke up with a fever of 103.7. It went down fairly quickly with a dose of ibuprofen ( non-chewable, crushed and stuck in some of his med yogurt) and a trip to the cold wading pool. He has been a little stuffy, but no other symptoms leading me to believe it's just a case of post- hospitalitis. I can't remember a single incidence in which Owen went to the hospital and didn't get sick within the next week.
 The fever made him extra cranky though. He whined all morning about more apples. I'd been so excited to come up with a good tasting recipe that let him eat half an apple, but he didn't think it was enough. Then he whined the whole time the rest of us ate our pancakes, asking when he could have "real" pancakes. I finally thought we had all the ingredients we needed for Owen's meals and wouldn't have to make a grocery run, but forgot about things I needed to feed the rest of the family. I haven't been successful in convincing everyone else to stop eating until we have Owen's diet under control.
 We got all of Owen's meals done on time (he's supposed to eat at regular times and intervals), but got behind on dinner for the rest of us. Brenna was crying and getting into the refrigerator, so I threw together nachos. I wasn't even thinking about the fact that it's one of Owen's favorite meals and he'd eaten over an hour before. He threw a tantrum for almost an hour over not getting nachos, and I couldn't even offer him something else to eat. Well, actually we offered him the 3 black olives that are considered a "free" food on the diet. Amazingly, he wasn't any more impressed than I was.
 It is really hard to watch your child scream to be fed and not be able to feed him. I think it might be even worse for us because of everything we've gone through to get him to eat at all. We've fought for years to get him to eat and now, just as he's starting to eat without a hassle we get to put him on an incredibly restrictive diet. I know things will get better once we get into a better routine. I'll be able to plan meals out better so that Owen is eating similar things to what the rest of the family is eating and I'll have come up with time saving techniques so we can eat closer to the same times, but today was rough.

Saturday, July 27, 2013

What is Owen Eating? (Ketogenic Diet)

 The Ketogenic diet is VERY strictly controlled. All of the ingredients have to be weighed out on a gram scale. The recipes must be followed EXACTLY. I have to scrape out all the containers and bowls used to make sure I don't lose a gram of something. Owen is getting 1198 calories a day based off of the 4 day "normal" diet plan I sent the dietician and his age, size, and activity level. He gets the calories in 4 equal meals of 265 ( plus or minus 4) calories and 1 bedtime snack of 138 calories to give him his medicine in. All 5 of those meals have to be at his 2:1 ratio of fat to protein/carb. What this means on a practical level is that all of Owen's food has to be prepared from carefully calculated ( thankfully there is a computer program) recipes. I can't substitute ingredients without completely re-working  the recipe.
Owen's pizza on an egg based crust
 The dietician sent us home with a day's worth of meals and several pre-made recipes. The problem is that I have to have the exact same brands as the recipe states or I need to re-work the recipe. We couldn't find all of the listed brands, so I've been re-doing recipes while Rod has been going to every grocery store in the county to see who has which brands. If I have a recipe for pancakes( egg and macadamia nut or a special keto baking mix) and strawberries, I can't just trade out the strawberries for blueberries. There are some "exchange" lists, but our dietician doesn't want us to use them for a few months until we find out how sensitive Owen is going to be.
Measuring out ingredients in the hospital
  We were sent home with 4 recipes for scrambled eggs. One with cheese, one with bacon, one with sausage, and one with kielbasa. When I got home I realized the the bacon and cheese recipes hadn't gotten switched over from the hospital's 38% cream to our local 36% cream. I also couldn't find the right brand of kielbasa or sausage. That meant I couldn't even make him something as simple as scrambled eggs without re-working the recipes. Eggs with cheese was pretty easy I just had to add a few grams more cream to make up for the fact that ours doesn't have as high a fat content. The sausage recipe I just placed on the back burner for a while since the store carries it, they were just out at the time I was there. The bacon recipe changed a few ingredients and the kielbasa recipe is quite a bit different.

Eggs and Bacon 38% cream
13 grams cream
14 grams bacon cooked crisp(weighed after cooking)
45 grams of egg (raw, well mixed)
11 grams butter

Eggs and Bacon 36% cream
12 grams cream
14 grams bacon cooked crisp(weighed after cooking)
46 grams egg (raw mixed well)
12 grams butter

 I know these seem like tiny little changes, but they make enough difference to matter on the diet. I'm not sure if I'll be spending more time at the computer calculating recipes or in the kitchen making them in the next few days. Once we have our recipes fine tuned things will get easier, at least until they change our ratio (current plans are to go up in a week or 2) at which point I will have to re-do everything again. 
 Owen has perked up a lot today. He didn't take a nap for the first time since starting the diet. He seems more alert and aware in general. We had a little bit of twitching last night as he fell asleep, but very little compared to usual.  His ketones are staying high and he's still eating everything even if it is under protest. We are trying new ways to get all of his supplements in him as adding them to the food is making it pretty unpalatable.
 This is his bedtime "med" snack. I'm not sure if you can see how big that pile of white powder is, but it's a lot for a couple of ounces of yogurt. Hopefully the diet will control his seizures and we can start to eliminate some of the medications in the next few months! The supplements will have to continue for the duration of the diet.

Friday, July 26, 2013

What's a Ratio? (Ketogenic Diet)

Owen's prize for getting his blood test done
 I've mentioned ratio before, but I haven't really explained what it means to the ketogenic diet. It's actually pretty simple in theory. When I say ratio in relation to the diet I'm talking about a simple formula of fat to protein + carbohydrates. It's written as 2:1, 3:1, 3.25:1, 4:1, etc. In plain English that means that you would have 2 (3, 3.25, 4)  parts fat to one part protein and carbohydrates combined. Our Keto team starts the diet with a day of low-carbing prior to hospital entry. Then the plan is to do a 2:1 ratio for a day, a 3:1 ratio for a day, and end with a 4:1 or "classic" keto ratio on the day of release. Owen, as usual, had other plans. We started the 2:1 ratio the first day and he immediately began showing ketones in his urine( we have test strips to use and the hospital did urine tests 2x a day and blood tests once a day). Everything was going great until early the next morning when Owen woke up shaking and retching. His blood sugar had gone down to 31. This isn't quite as bad as it sounds except that he was very symptomatic of low blood sugar. On the Ketogenic diet, the body uses fat for energy not glucose, so a much lower blood sugar than normal is alright. Owen just needed a few milliliters of juice and his breakfast to feel normal again.We also added baking soda to his food to help combat acidosis.
 The team decided to keep Owen at the 2:1 ratio for another day instead of moving him to 3:1 right away thinking that a slower transition might be better for him. At this point I resigned myself to staying in the hospital an extra day. All of his tests kept coming back showing high ketones though, so the third day they decided to send us home on a 2:1 ratio. We will probably be moving to a higher ratio in the next few weeks, as it would be rare for Owen to maintain good ketones on this low of a ratio (2:1 is usually only used for going on or off of the diet), but we can make small changes slowly at home. We see the neurologist again in a couple of weeks and will check in with the keto team at that visit, then we have a keto follow up in September.
This was Owen's car during his hospital stay. He had a parking space right outside his room.
 What is the diet doing for Owen's seizures? Well, we won't really know for a while. Owen has several types of seizures and the "little" ones can be really hard to distinguish from normal activity if he isn't hooked up to an EEG. His "big" seizures ( the status ones that don't stop on their own) have only been happening every 6-10 weeks with his current medication dose, so we might not know for months if the diet is working for sure. We have already noticed a (huge) decrease in his "twitching" episodes at night. Today Owen fell, but I wasn't looking right at him, so I don't know if he actually fell or if he had one of his small seizures. In a few weeks or months, depending on how he's doing we will start to taper off some of his medications and that will give us a better idea of how the diet is working.
 So far the only side effects we've noticed (aside from the blood sugar drop in the hospital) have been some excessive tiredness (completely expected for the first week) and some moodiness. The moodiness could be caused by the change in metabolism, by his drugs affecting him differently(they'll test his blood levels at the August apt), or just by the emotional aspects of being in the hospital and having his favorite foods taken away. Hopefully he'll be back to normal in a few weeks!
 Owen has been such a trooper about the whole thing! He's done some whining about having to eat the different food. I got yelled at once "Remember no oil, Mommy!", but he's eating everything even if he is complaining about it. He thought he was going to leave the keto food at the hospital and have "real" food when he got home. We are playing with the recipes trying to find the most palatable way to get all the fat in him and still give him things he likes, but I think that will be another post.

Home Again - Ketogenic Diet Update

 We are home from the hospital! We actually were released Wednesday evening, just in time for the worst of Seattle traffic. We made a few stops to get several brand specific items for Owen's diet and to pick up Morgan and Duncan, so we got home well after bedtime.
 Today was spent unpacking, catching up on laundry, finding even more brand specific items for Owen, and creating a plan for the next few days of his diet. I spent over 3 hours either making his food or changing/creating recipes for his diet. I'm too exhausted to post much about the diet tonight, but I plan to have several posts over the next few days. I'll tell more about his hospital stay, explain the ever important "ratio", and give an explanation about why 49 is a good post meal blood sugar for Owen. I'll also explain why we've spent so much time finding specific brands for Owen's ketogenic food.
 For now, I'm just going to post a couple more cute pictures and go to bed.

Wednesday, July 24, 2013

Make Hay

 When we moved in to this house, we were informed that Bob always mows the field. The previous owners left us his number in case we didn't want the field mowed or in case Bob forgot.

 This year Bob had been extremely busy and hadn't been able to get to our field. The neighbors were asking us when Bob was going to mow our field as it was getting very long and starting to attract the wrong types of wildlife (like coyotes).

 We finally got a chance to talk to Bob and he asked if it was alright for his friend to mow our field instead. We don't really care who mows the field, we just want it mowed. Bob's friend brought over his brand new, shiny, mower and made these wonderful round hay bales for us.

 There are some things I really love about living in the country. The people are one of them. Like Bob. I don't know the rest of his name. I don't know his son's name, even though he and his wife lived across the road from us for a couple of years. I don't know Bob's friend's name. I don't need to know their names. If someone asks who mows our field, I say Bob and everyone knows exactly who I'm talking about. If someone asks which house we live in, I don't give them my address, I tell them we live next door to Pete, across the street from Bob's son and EVERYONE knows exactly where I'm talking about. I know some people don't like that about small towns. maybe if I'd lived here forever I wouldn't either, but right now it's one of the things I find most endearing about this place.

Tuesday, July 23, 2013

Devon's Face- Sibling Love

 Duncan drew these pictures the other day. When we asked him to tell us about his drawings (I never ask a child what they drew, I ask them to tell me about their picture) he informed us that they were pictures of Devon's face. There is a frontal view and a profile picture. It's so nice to have children who love each other!