Stay of Execution

 The good news for today is that we have an official extension on our access issue! We now have until the end of November before our access to our property is cut off. Hopefully that will give us time to settle with the title company. It would still put us on an extremely tight schedule if we do have to move, but maybe it won't come to that.

 I thought these pictures were appropriate. We're still in the dark, but a little bit of moon is shining through. Now we just need some actual sun (figuratively of course).
  My Dad is out of the hospital although this recovery has been a lot rougher than the last. I guess four surgeries in six months is a lot for a body to handle. He seem to be doing a bit better today though.

  I know I promised to finish the Owen story I started here, but I've been exhausted this week and it's a hard story to write. I'll try to finish it this weekend.
 I still haven't gotten pictures of Morgan's new clothes, but I am almost finished with another dress (just needs buttons and button loop). So again, maybe this weekend?

 If Brenna will cooperate,I'm going to try to get some sleep. Unfortunately she hasn't been in a cooperative mood this week. I'm pretty sure she refuses to sleep well whenever she knows I'm stressed and could use a little extra sleep on purpose. It just seems too purposeful to be a coincidence.

Sue Happy?

 We often get asked why we haven't sued anyone due to all the "mistakes" with Owen's care.We have actually consulted a few attorneys. We hear all the time in the media about how medical costs are so expensive because of all the frivolous lawsuits.  I'm just not sure who is filing all those lawsuits because the process isn't really that easy. First you have to find a lawyer who actually takes medical malpractice cases. If you live in a large city that might not be very difficult. In the midsized city closest to our tiny little town( we don't even have a single stoplight, let alone a lawyer) , there were only two. Then you have to see if they will take your case. We were turned down by one lawyer because our problem occurred at the only hospital in our county and the lawyer wouldn't take cases against them in case he ever needed to use the hospital. He didn't want to risk his own care by being known as "that lawyer who sues us all the time". We were told another lawyer wouldn't take our case because their daughter used the same hospital Owen had been at.

 Then there are the merits of the case. The medical industry has certain standards of care and if a doctor has followed those standards, they probably can't be sued even if those standards weren't appropriate for that patient. When Owen was born the doctor chose to send me home based on the point I was at in my labor. That decision matched the standard of care. It wasn't the right decision for Owen and I, but they could show that most doctors would have sent me home. With the EEG case, she did not follow the standard, but then we have to be able to prove that his problems were caused or greatly worsened by that incident. We would have to prove that it wasn't just the natural course of his disease. That would require expert medical witnesses. Doctors don't want to testify against each other. It is really hard to get another doctor to admit that a previous doctor did something wrong, let alone admit that it caused serious problems for the patient.

 Then there is cost. Lawsuits are EXPENSIVE! There are lawyers who will take a case without getting paid until a settlement, but only if they think there is a very good chance of winning and only if they can make a lot of money off the case. There was no way we could afford to pay upfront, especially with all the expenses related to Owen's care. Without paying a large retainer we would have had to sue everyone and anyone for as much as we possibly could sue for. We wouldn't be able to just sue for actual damages since that wouldn't be enough payoff for an attorney to want to gamble on our case. They pay the costs involved with the case ( filing fees, letters, researchers,experts, etc.) in the hopes that they will make enough in the end to pay for everything plus make a nice profit. It isn't worth it for them to take a small case.

 Lawsuits also take a long time! It's very stressful too. We have friends who have way more documentation about the malpractice their daughter endured and they have just, after 5 years, gotten a small settlement on one of their smaller cases. All of that money went to pay for the larger case. Five years of fighting and they still don't have any money for their daughter's care. We decided we just don't have the mental energy to pursue a lawsuit. Our biggest concern has been to make sure these things never happen again to any child. We have filed complaints with the hospitals involved and with the state licensing agency. The doctor who mishandled Owen's birth is no longer practicing in our state. I don't know if it is related to our case or not and I don't know if she can go to other states or not, but she's not here anymore. We haven't really heard anything about the EEG tech. I keep meaning to follow up on what happened besides the "talking to" the hospital gave her, but I've been so busy with Owen's care I haven't had the chance.

Soap?

 Today I noticed that SOMEONE had squished the zip lock bag of Owen's keto cookies. They are just egg whites beaten to stiff peaks with a pinch of cream of tartar and 1/3 of a package of sugar free Jello, then baked. They squish quite nicely! A bit like that foam play dough stuff I can't remember the name of right now. My D children are the usual suspects for anything squished, poked, or otherwise mutilated in some way. Since Devon was standing right next to me when I discovered the bag of foam formerly known as Owen's cookies, I asked her if she was the perpetrator.

Devon: It's not me. It was Duncan! Why do you always blame me?

Mom: Maybe because I KNOW who pokes the holes through my soap all the time and it isn't Duncan.

Duncan: Yeah, I don't use soap.


LONG PAUSE

Mom: What do you mean you don't use soap? You wash your hands with soap after you use the bathroom don't you?

Duncan: Only if someone's watching me.

And I never did find out who squished the cookies.

One Year Ago Today

 One year ago today we headed to Bellevue so Owen could have an EEG. He had several EEG's as a newborn and one more after his 2 hour and 40 minute seizure. The one after the long seizure hadn't shown any seizure activity, but did show how doped up he was. He'd had at least eleven doses of at least 5 different types of medication to get the seizure under control. Since that time we had five different medications (or combos ) fail to control Owen's seizures.

 Our neurologist at the time was convinced that Owen was going to require brain surgery. before brain surgery can be considered however, several EEG's need to be done to make sure the seizures are coming from one area in the brain. Then they have to determine if that area is operable. So, off we went for the first EEG.
 Owen was experiencing a LOT of medical anxiety at that point in time, so even though we had been using an EEG play kit to prep him. I really didn't think he would cooperate with the process. We decided to do the test at the Bellevue clinic since Owen had never been there before and hopefully wouldn't be as scared. I still fully expected to come home after a failed attempt. Most of Owen's seizures occur when he is falling asleep, so they wanted him sleep deprived for the test. We had to wake him up 3 1/2 hours earlier than normal and then KEEP him awake on the ride to Bellevue. We allotted 5 hours(we usually allow 3 hours) for the trip and brought Cameron along to play with Owen in the car ( we also had 3 month old nursing Brenna with us). Every time Owen started falling asleep we would stop and let him run around until he woke back up. We finally arrived at the clinic 10 minutes early for our appointment with an Owen so tired he was falling over and couldn't walk.

 We decided that Rod would go back with Owen while I stayed in the lobby so I could nurse Brenna. As they started to go back to the testing room, I realized I had made a mistake. I'd only packed one diaper bag for both Owen and Brenna. We figured Brenna was more likely to need changed than Owen and that the clinic would provide supplies for Owen if he needed them badly. There was one problem with that line of thought. Owen's rescue meds were in the diaper bag and the clinic did NOT have a plan in place in case Owen went in to status epilepticus. I'm not sure why they didn't given Owen's history which was clearly labeled in his chart, but they didn't. I didn't think to ask specifically because I couldn't ( still can't) comprehend why they would purposely induce a seizure without having a means to stop it and I thought the chances of Owen actually letting them perform the test, let alone falling asleep on command were less than our chances of winning the Mega Millions lottery. I guess I should have bought a lottery ticket that day!

 About an hour had passed and Owen hadn't come back out, so I started thinking maybe he was cooperating after all. A few minutes later the technician came out and called for the parent of Owen. I went over to her immediately and she told me that they needed his rescue medication. I quickly loaded Brenna into the stroller and grabbed Cameron away from the Wii. I was pulling his rescue meds out of the bag and prepping the syringe while we walked down the hall. We got into the room and Owen was having one of the worst seizures I'd seen since the "bad" one. We're supposed to wait 4 minutes before administering the Diazapam, so I asked the technician how long the seizure had been going on, while Rod got Owen ready. She told me 14 minutes! I almost hit her. Seriously, I only restrained myself because the kids were there and Owen needed his medication IMMEDIATELY! Any seizure over 5 minutes is an emergency. There is no way someone can work in a neurology unit and not know that. I also found out later that it had actually been 18 minutes AND that the seizure had shown up on EEG for 5 minutes before visible shaking had occurred. That means that that woman let my son seize for 23 minutes without getting him help.

 While the technician went to get me, her supervisor had called 911 to transport us to the main campus of the hospital. Owen's seizure was just ending when the ambulance arrived. The supervisor was trying to take the electrodes off of Owen's head while the paramedics were trying to get him onto a stretcher. I remember being so angry that she was doing that instead of getting us to the hospital right away. I learned later that Owen had almost $1000 of gold on his head, although I still think we should have gotten to keep it. Their "mistake" has certainly cost us a lot more than $1000.
 I rode in the ambulance with Owen while Rod followed us in our van with the other kids. When Rod got to the hospital I was angry with him. I asked him why he hadn't done something sooner. He told me that he was holding Owen when he started seizing and there wasn't a safe place to set him down. The room only had a narrow exam table with no rails. Rod had asked the woman to get help 5 times and she kept telling him to wait a few minutes because she was getting important information and needed a few more minutes. Rod had finally gotten angry and maneuvered around enough to  reach the phone and call 911 himself when the technician finally called her supervisor in.
 We spent several hours in the emergency room before going home with another Anti-epileptic drug to add to the one he was currently taking. The doctors and nurses in the hospital are required to ask if you feel safe in your home as a part of domestic violence awareness ( I always find it interesting that they ask me that, but never ask Rod). When the intern came in and asked me if I felt safe at home, I blurted out "Safer than at the hospital, obviously". It wasn't until I saw the shock on her face that I figured out what she was really talking about.
 We finally got home around 11:00 that night. It took Owen 5 days to be able to walk with out looking like a drunk and a week and a half for his eyes to both look straight. On the newest medication we'd been on, Owen had only had one 4 minute seizure that had ended on it's own. After the incident last year, his seizures started coming every 3 to 14 days. They lasted 20 - 30 minutes. One time Owen stopped breathing for 5 minutes while I did rescue breathing and waited for the ambulance. Several times he needed oxygen afterward to get his pulse ox back up. He stopped being able to count, say his ABC's, and speak Spanish. His hand eye coordination regressed to the point where he could no longer put puzzles together (he knew where the pieces went, he just couldn't actually put them there) or thread beads.
 We eventually got an apology letter from the patient advocate from the hospital telling us how they gave the technician a good talking to about following protocol. She didn't get fired. She didn't get suspended. The hospital also told us that they couldn't get Owen in for more intensive testing for 4 more months. Even though their mistake made his condition so much worse.

TO BE CONTINUED...

Things I Don't Like About Being the Mom

 I've always wanted to be a Mom. I've always wanted to have more than the average number of children. When I was in second grade I told my Mom that I was going to have one hundred children. I also told her that I would drive them around in a school bus and live next door to her so she could babysit for me. Most of the time I am thrilled to be a stay at home Mom of many, but there are a few things I don't really like about being a mom. Especially with as many kids as I have.

 I don't like being the only person in the house who can find things. I don't understand why everyone else has such a hard time finding things and I have better things to do with my time than look for things. "Mom, I can't find my shoes" . "Sorry dear, I don't wear your shoes, so I don't know where they are. Have you tried the shoe rack? You know, that special rack I bought just for shoes, right inside the door ". "Mom,where's the flour?" " I don't know. Maybe you should try the canister labeled flour in the cabinet all the baking goods have been in for the entire four years we've lived in this house". DRIVES ME NUTS!!!

 I don't like constantly being interrupted in the bathroom. I've timed it before. I was in the bathroom 3 1/2 minutes and was interrupted FOUR TIMES. Seriously! It only took me 3 1/2 minutes because I was interrupted so much. My husband can be in the bathroom for 30 minutes without being interrupted, but not me. I can't be out of sight for 3 1/2 minutes. It's not like they were coming in to tell me that someone was bleeding or the house was on fire. No, I get asked where the flour is and if they can watch T.V.

 I don't like puke. I won't go into details. I'm sure all parents can fill in the blanks.

 I don't like being the "bad guy". I really don't like to be nagging my kids all the time. I don't bug them about doing what they are supposed to do because I enjoy it. I'd much prefer to have everyone do what they are told the first time. I much rather have my children do the things they need to do without being reminded constantly( note: I am talking about children who are old enough to know better. Obviously the 1 year old NEEDS constant supervision, the 16 year old shouldn't), so we have time to do fun things.

 I don't like combing through everyone's hair with a lice comb multiple times a day now that our possible exposure has turned into a definite exposure. Thank goodness the baby is bald!

Put on a Little Makeup!

 I've mentioned before what a girly girl Brenna is. Well the other day Devon left the house for a few hours. It seems that she forgot to put her makeup box up. Morgan was spool knitting in the girl's room and came out to get help with a tangle. When Morgan came out she didn't shut the door because she intended to go right back in. Only she got distracted. Several minutes later, I looked up from the computer (where I was calculating a recipe for Owen) and realized Brenna wasn't in sight. We found her in the girl's room covered in makeup!

 We pulled Brenna out and took her to the bathroom to clean up. I just shut the door and figured Devon could clean up when she got home since she shouldn't have left the makeup down in the first place.

 When Devon got home she found the "used" makeup and brought all the containers to Brenna and asked her what she thought she was doing? These pictures are Brenna showing her.

 It seems that Brenna is perfectly capable of undoing screw top containers. We thought we had a few more months before she figured that out.

 Do you see the rollers in the pictures? I love that my bald baby thinks she needs curlers!

 Check out the eye shadow!

 I really don't know what I'm going to do with this child!

Updates!

The girls playing with the microwave box

  My Dad had his fourth surgery in less than seven months today. It took a little longer than expected and he was having some blood pressure issues, so he's spending the night in ICU. The surgeon felt that the operation went well and Dad should finally have some relief from the pain that's been plaguing him for the last year. I sure hope so as between him and Owen I'm getting awfully sick of hospitals! Oh yeah, and I hate to see Dad in pain too.

 We haven't really had any new news on the house issue except that we talked to our bank about the status of our loan if we no longer have access to our property and they are putting their lawyers on the case too. We are looking at a few houses tomorrow in case we do end up needing to move quickly.

 Owen's ketones are back up with the 3:1 ratio, so maybe we will be able to stick with this for a while. We still haven't gotten any of his test results back.

 I finished a skirt and top for Morgan and have a dress that just needs buttonholes and buttons. I just haven't gotten pictures yet.

 We're STILL waiting to find out what the insurance company is willing to do about Rod's work van. Thankfully Mom is letting us borrow her truck until we have a chance to do something else, so I'm not completely without a vehicle. Devon and I can get all the kids somewhere using Mom's truck and our little car if we need to.

 Devon is all set for school except for getting her books which we can't do as the teachers haven't posted the book lists yet. All the paperwork is finished though. With homeschooling, the only paperwork I have to fill out is a one page Declaration of Intent to Homeschool at the beginning of each school year. One page for all of the children, not even one page each; so all the paperwork involved with enrolling in running start through the high school and registering at the technical school has been a bit overwhelming. I thought scouts had a lot of paperwork!

 For the next few weeks it looks like we'll be doing a lot of waiting. Too bad I'm not better at it!

Lice!!!

These pictures have absolutely nothing to do with this post.

 Today we found out that our children MAY have been exposed to lice. I did head checks and haven't found anything yet, but we've washed bedding just in case. I also oiled the heads of the children most likely to have been exposed. Luckily Brenna is pretty bald and the boys don't care if their heads get shaved, so that only leaves me two children to really worry about. I'm not even going to think about the chance that I could get them, not with my nearly waist length hair.
 There is a problem with lice today. It seems that they are becoming resistant to the usual treatments. What this means is that parents think they've treated their children and everything should be fine, but it's not. The good news is that as creepy and itchy as lice are, they aren't actually all that harmful.

I figured this was a lot prettier than a picture of lice.

 Even with nine children, we've been lucky enough to have only had one actual lice outbreak and one exposure scare before. When Kristi was in first grade her entire classroom had problems with lice for several months. The school had to institute new policies like hanging coats on chairs rather than in a common coat closet and asking long haired students to wear their hair up. We never actually found any lice at our house, but she did get treated at her mother's house, so we followed precautions anyway. Then 10 years ago a child at scouts was found to have lice. Our children hadn't really been close to her, so we oiled everyone's hair and did head checks for a few days. Hopefully this will blow over that easily too!
 I myself had a case of headlice back in second grade after a slumber party. It seems that first through third grades are the most likely age for this sort of thing. I assume it's because the kids are old enough that parents aren't doing all of their care (hair washing, brushing, etc.), but they aren't quite old enough to be aware of something not quite right yet. Even though it seems to be a rite of passage, I wouldn't be at all upset if it just passed us by this time.

To School

Picture taken by Owen

 We have always homeschooled our kids. Rod and I are both products of the public education system and neither of us were very impressed with our experiences. I decided when I was in high school that I was not going to inflict that punishment on my children ( at least not full time, we have considered a class or two at school). Rod's high school journey, while completely different from mine wasn't any more satisfactory, so he was fine with the idea of no public school. By the time Devon reached school age, we had 3 small children and my two stepdaughters part-time plus child support payments. It became very obvious that private school wasn't going to work financially. I had always been intrigued by homeschooling, but I wasn't sure if I could manage it. I had the impression that I had to replicate school in my home, complete with strict schedules and all the other things I had found unbearable when I was a student. Being me, I started researching EVERYTHING I could find about homeschooling. I was especially intrigued by a concept referred to as unschooling. While we have never really gone as far as what I would consider unschooling, we have been very relaxed about our homeschooling. Devon hasn't finished a math book in over three years.She's worked on four different programs, but hasn't finished any. She worked through the same science book for three years. She didn't really read (actual chapter books) until she was twelve ( she has dyslexia).
 You might be thinking she hasn't learned anything, but you'd be very wrong. Devon has managed to become an excellent baker and cake decorator. She's learning about photography and film making. She's also doing incredibly well with "regular" school subjects like English, Math, and History.

Picture by Owen

 In our state there is a program called Running Start where high school juniors and seniors can take college classes with public school funding. Tuition is covered if the classes count toward high school graduation. Home schooled students are eligible as long as they qualify as juniors or seniors. Devon is all signed up for this fall! As part of the admission process students have to take a placement test. Devon scored into college level classes in all three subjects tested! Not bad for about an hour of practice and years of relaxed homeschooling. First quarter she's taking a computer course required for all students, a communications class, and a math class. Second quarter she'll start the Culinary Arts- Pastry program. She's done most of her admission requirements herself, more than I would have been comfortable with at her age. We're confident that she'll do great!

Blog Watch!

 It has recently come to my attention that my children keep a close watch on the sidebar of my blog to see whose names are attached to the most posts. Connor is falling behind, having been tagged in only 15 posts. Two less than Cameron and a whopping forty two posts behind Owen!

 Why is Connor so far behind, you might be wondering? These pictures are a pretty good indicator of the reason. I hate blog posts without pictures and Connor doesn't like his picture taken, let alone posted in cyberspace for anyone to see.

  When I get some better pictures, Connor might have more appearances on the blog. This post will put him only one post behind Cameron though.

UFO No More!

 In the crafting world we refer to unfinished objects as UFO's (UnFinished Objects). I started this little dress for Brenna in April, I think. I can't even remember for sure. It kept getting pushed back for other projects. I finally decided I wouldn't pick up any thing else until I finished it.

 Brenna was only willing to model the back of the dress today, So pictures of the front are lacking. I love how it turned out though. The yarn is this super soft alpaca that just makes your fingers happy to touch it. I've been asked several times why I use "good" yarn for children's clothing (especially diaper covers). The main answer is that I'm the one who makes the item. I like to use good yarns, so I do. I have a much easier time finishing a project that pleases my senses, than one that doesn't. So, the majority if the time I use materials that I find enjoyable to work with.

 Hand made items also take a lot of time and effort to make. I'd rather put my time into materials I know will last than cheap ones that might wear out or just not end up with the look I want. Even with cheap yarn, I can usually buy a sweater or hat for less than I can make it for, especially if I put proper value on my time. If I'm going to put that effort into something I want it to be worth it.

 Yarn is also my splurge. I don't drink coffee, so no $4.00 Starbucks every day. I don't get my nails done, and I only get haircuts once or twice a year. I only shop for clothes when I really need them and only for the items I absolutely can't live without. Instead I buy yarn. At least it usually goes to clothe my children after I've gotten to enjoy working with it.

Finally front views!

  I should add that after Devon finished taking these pictures Brenna fell down and landed on a big blob of chicken poop. The dress washed just fine, no stains. At least she didn't drop it on a campground road where it got run over and ground into the mud by several cars like the hat I made Cameron!

Matches!

 Brenna is such a girl. Obviously, I have two other girls (and my two grown up stepdaughters), but Brenna is the most "girly" (Krisi's the next closest). She loves make up, hair stuff (making the baldness even more disappointing), dresses, and anything pink.

 Today, I was finally starting  to sew some clothes for Morgan, but Brenna kept running off with the pink fabric. I finally wrapped a scrap piece around her and she went straight to the mirror and started doing a runway walk in front of it.

 I was getting her ready for bed tonight and I tried to put her favorite kitty nightgown on her. She kept shaking her head no and fighting me. I tried another nightgown and still she said no. I finally pulled out a pink flowered one and she let me put it on her.

 I put her down on the ground and she grabbed the pink teddy bear she'd been playing with and held it up to her dress. "Matches!", she exclaimed. At 15 months old, the child cares if she matches her teddy bear! I'm a little worried about this one.