Tuesday, April 30, 2013
No, I didn't get a picture of the plunger stuck to his face. We were far more worried about cleaning up.
It reminds me a little of when Duncan got the potty ring( a little toilet seat you put over the regular toilet seat so little ones don't fall through) stuck around his neck. No, I don't know why kids do these things. If I did I'd write a book and make a fortune.
Sunday, April 28, 2013
I sewed on the last sets of buttons today! I finished six dresses and two tunics for Brenna this week. I spent closer to two hours a day sewing than one and I traced all of my patterns and cut all my fabric last week. Still, eight finished items in one week! I even managed to get Brenna to do a mini photo shoot, which isn't easy with a newly walking , almost one year old.
I love this pattern because it is so basic and easy to modify. I plan to make more of these, so maybe I'll do a tutorial of my modifications soon.
Emory Dress (worn over the tank dress from above). I love this little dress and will be making several more of them. My only modification of this was to make short sleeves for Summer.
Citronille Verveine, I will be making more of these too.
Not too bad for a week's worth of work. Now Morgan wants a whole new wardrobe too though. I don't think it's going to happen next week.
Brenna: baa, baa, gah, goo (or something like that)
Owen : I so sorry you so baldy baby Brenna
Friday, April 26, 2013
I have actually managed to sew for at least an hour a day all week, even with sick(again) kids. I have NOT managed to get pictures taken, downloaded, and posted, however. I have one completely finished item. It's actually in the wash right now because Brenna didn't want to take it off after I tried it on her and ended up wearing it to bed last night. Everything else pretty much needs hems and buttons, hopefully I'll get pictures up tomorrow.
What is the Ketogenic Diet and why would we put Owen on it? The Ketogenic Diet is an extremely high fat diet that induces ketosis, meaning that the body burns fat for energy instead of carbohydrates. For some reason that no one has been able to completely explain it greatly reduces or even stops seizures. The diet was actually developed in the 1920's , but fell out of favor with the discovery of new anti-epileptic drugs. It is usually only used now in hard to control cases where a patient has failed at least 2 drugs. Owen has achieved some seizure control with drugs, but only by taking near toxic levels of 3 different drugs at once. The "typical" dose of zonisimide for a child Owen's weight is 100MG a day, Owen is taking 175MG plus 2 other drugs. The Ketogenic Diet has about a 50% chance of reducing Owen's seizures by 50% or more. We have a 10 -15 % chance of eliminating his seizures altogether. His chance of achieving complete seizure control with drugs is basically zero now.
The Ketogenic Diet is a medical treatment, not just a diet like people use to lose weight. It MUST be done under close supervision of a doctor and specially trained dietician. Owen will get about 90% of his calories from fat. Every meal he eats will have to be carefully calculated to the TENTH of a gram. This is difficult to do with any child (easiest if the child is completely tube fed), but with Owen's eating issues we aren't sure if it will be possible without replacing his G-tube. For the last few weeks we have been trying to wean Owen off of several of his favorite foods which wouldn't be allowed on the diet (juice, french fries) and adding in items that would be allowed (bacon, olives). This week I tried making several recipes to see exactly what would be involved, and to see if we could get Owen to eat any of them (don't worry, we didn't feed him full keto meals, just samples along with his "normal" meals). It took me 1 1/2 hours to make 3 single serving meals the first time I tried. Have you ever tried to measure out EXACTLY 15 grams of olive oil? I now have. The second time it took me 45 min to make a 4x batch of one recipe. I tried that because the only way I can see this working is if we have pre-made meals ready to go at least part of the time. We will never be able to leave the house and pick up fast food if we are out longer than expected. I have a few more things I want to try this weekend and then I think we will be calling the Doctor to set up his start up appointments. We will probably be in Seattle for 3-5 days to start up the diet. If it becomes obvious that Owen is not going to cooperate with the diet we will have his feeding tube put back in. I'm really hoping we don't have to do that. It seems like such a step backwards after everything we have done to get rid of the tube.
Wednesday, April 24, 2013
Most people reading this blog are friends and family of ours, so you already know at least part of Owen's story. I'm not going to tell his whole birth story in this post (maybe another post later), but I'll give some quick highlights to get us up to the present. Owen was born clinically dead. He was revived and spent 3 weeks at Children's Hospital in Seattle before we brought him home. Owen had several seizures in the NICU and when we first brought him he was on Phenobarbital. He also had a feeding tube, which quickly became the center of our lives. When we first came home from the hospital I was spending nearly eight hours a day feeding Owen between pumping breast milk, dealing with the feeding pump, re-inserting the NG tube, and dealing with the reflux. By six months of age, Owen was showing no more seizure activity and the Phenobarbital was discontinued. This just left us with the feeding issues. At 11 months old, Owen was cleared to start limited(very limited) trials of pureed foods. Over the next year we gradually increased his oral intake and reduced his tube feeds. By October 2011( 2yrs 3 months old), Owen had gone 2 weeks without a tube feed. Then on October 27th Owen got sick. At first we thought it would be a good test of whether or not we were ready to get rid of the tube for good. If he could make it through an illness with out needing fluids through his tube it would be a good sign that he was ready to have the tube removed. Owen's fever quickly shot up from 99.8- 103.8 in less than an hour. I gave him some Tylenol and the fever started dropping. Owen fell asleep, so I put him to bed, figuring sleep was the best thing for him. When I came in about 15-20 min. later to check on him he was having a seizure.
The seizure lasted 2hours and 40 min from when I noticed it. It could have been closer to 3 hours since he'd been alone for 15 -20 min before that. We took 2 ambulances to our local hospital. Owen was given at least 11 doses of at least 5 different medications (I eventually lost count) to finally get the seizure under control. He was intubated and sent by ambulance to the airport where we took an air flight to yet another ambulance, finally ending up in ICU at Seattle Children's. We stayed there 5 days and finally came home on Keppra, another anti seizure drug. A few months later Owen pulled his feeding tube out and we made the decision not to have it put back in(the hole had started to close up). Owen has been maintaining his weight orally, but has a very limited palate. Eating is still a constant struggle, but it is worth it not to have the constant tube infections.
Over the next year and a half, we tried several different medications trying to get seizure control without horrible side effects. Owen's seizures can last 20-30 minutes long even with the administration of rescue meds. We hadn't been able to go more than 6 weeks without a seizure. In November 2012, we switched to Swedish Hospital. They changed more meds, and upped others and we have now gone almost 3 months without calling an ambulance. During this process we discoved that in addition to the big seizures Owen has small ones all throughout the day and nearly constantly at night. The drugs have not been successful at stopping those. The drugs also suppress his immune system, so that we deal with illness constantly. The above picture shows Owen's bedtime meds (The syringe is antibiotics he took 2x a day for 10 days). He only takes 6 pills in the mornings. The doctor doesn't feel that we can up Owen's medication further without taking him to toxic levels. We have determined that Owen is not a candidate for brain surgery since his seizures occur all over his brain. Our next step is the Ketogenic diet. I actually heard about this diet a while ago, but we haven't been sure if we could get him to eat it due to the eating issues.
To be continued...
It's kids sewing week and this year I decided to participate. Why this time when I haven't ever before? Well, because I actually came across the site 2 weeks BEFORE this season's challenge week instead of a week or two after. Usually I see a post on the cute things someone made and then have to try and remember to check in for the next season. Of course, I then forget until after the next challenge is over, and well, let's just say I've been wanting to participate for over a year and just finally got my timing right.
This year's challenge also came at the perfect time, since I had just ordered some new fabric and patterns to make clothes for Brenna, Can you believe my baby is almost an entire year old?!
I don't have any finished items to show yet. I very rarely make just one item at a time when I sew. This time I am basically making Brenna a whole new wardrobe, so I cut all my fabric first. Then I pin everything that needs to be serged for all the different items I'm making that can be sewn with the same color thread. Then I re-pin and sew, Re-pin and serge, etc. Kind of an assembly line process. Tomorrow I will probably have a couple of the simpler items finished, but by Saturday I should be finished with everything. Except maybe sewing on buttons, that might have to wait another day or two.
Sunday, April 21, 2013
Have you ever seen your baby pick something up off the floor and start to bring it to her mouth? Have you then rushed over to her saying "No, no, don't eat that. It's not food"? Once you reach the baby, have you taken the item out of her mouth only to discover that it was a broken pretzel, stale cheerio, or dried up macaroni noodle? Have you then said "Oh never mind, it is food after all" and then given it back to her to eat? If so, you can be sure this is not your first child. No, I am not saying this has EVER happened to any baby in my house(if I don't say it didn't really happen).
Monday, April 15, 2013
Devon was singing to the little kids the other day and couldn't remember the song "where his name is my name". " Do you know what song I mean mom?" she asked. I did, of course. John Jacob Jingleheimer Schmidt, His name is my name too, Whenever we go out the people always shout, There goes John Jacob Jingleheimer Schmidt! Dah,dah,dah,dah ,dah, da dah da! So, I walked away and Devon started singing the song. Only Owen kept spitting in her face. I came back in the room to have a little talk with Owen. "Owen , We don't spit at people! Why do you keep spitting at Devon?" "I'm just singing the song. John Jacob Jingleheimer SPIT!" What would we ever do without this little boy?
I am constantly getting asked why I don't have a blog, often by my own children. The problem is that I am a bit of a perfectionist. So, why start a blog when I might not post often enough, might have crappy pictures, might not have the time and energy to make it look the way I want it to, etc., etc. Well, I'm trying to get over my perfectionist tendencies and accept that the best of my abilities really is good enough. So, here is my blog. A time for every purpose. Some people have craft blogs, some people have homeschooling blogs, some people have large family blogs. There are blogs about homesteading, blogs about cooking, and blogs about medical issues. My blog will have all of these. Sometimes I will show you all the lovely things I have knit and sometimes I will be so bogged down with medical issues that I won't have any new knit items to show you. Hence the title. I am Mama to seven beautiful children ages 1 to 16. I am also Stepmama to 2 married daughters. We live in the country on 3 acres with goats, chickens, ducks, and rabbits. We are currently enjoying the fruits(actually pork chops) of our first attempt at raising pigs, and will probably be getting more pigs soon. We have fruit trees and gardens. I knit, crochet, and sew. Occasionally, I even embroider, felt, and make Waldorf style dolls. We do a lot of our cooking from scratch and I will share recipes for the things I actually use recipes for. We have homeschooled our children from the very beginning, so I'm sure there will be plenty of post about that. My youngest son Owen has some severe medical issues, so you will hear plenty about that here too. Since we all know blog posts without pictures suck, here's a picture that my children say pretty much sums up what life in our house is like. Owen hiding out in the bathroom on top of a pile of dirty laundry with a contraband electronic device.