Owen Update!

Old pictures from when we thought Owen would start sleeping in the boys room soon.

 Owen had another small seizure this week. Only 30 seconds long, but I was really hoping to not have ANY seizures on the diet. We just started him on Carnitor which helps process fats. That usually helps increase ketosis although his ketone tests have still been in normal range. Starting another new supplement might have been a factor in causing the seizure.

  He's been  having a horrible time sleeping! I strongly suspect that the change in metabolism from the diet is affecting how his body processes his medications. The doctors plan to wait until just before his next visit in November to test his medication blood levels though. Owen has been waking up multiple times in the middle of the night screaming. He's also been waking up asking for food. we're hoping that increasing calories at his bedtime snack will help with that. He hasn't been falling asleep until 11:00 or 12:00 and then often wakes up at 7:00 crying about being hungry. This is especially problematic because one surefire seizure trigger we have found for Owen is lack of sleep.

 Owen's current medication and supplement schedule is:
 Morning:
     1200 IU vitamin D (Carlson drops)
     Carnitor 1mg (upping to 2 mg in the next week)
     80 mg Lamotrigine (4 pills total)
     1/4 t calcium carbonate
 Afternoon:
     250 mg K Phos neutral (can't be taken with calcium or iron)
Bedtime:
     1/4 t calcium carbonate
     1/4 t baking soda
     Carnitor 1mg
     80 mg Lamotrigine
     175 mg Zonisimide ( 4 capsules opened up and mixed into food)
     5mg Onfi
     1/2 Centrum adult multi-vitamin (crushed and mixed into his food)

Then we also have Mirilax (prescription)we can give him for constipation, but I'm trying to control that with diet first. Tylenol suppositories(prescription) and adult Ibuprofen (3/4 tablet crushed in food) in case of fever or pain, and Diazepam and Ativan in case of breakthrough seizures.

 We actually told the poor little guy that he might get rid of some of his medications if he follows the diet. Instead we've just added in a whole ton of supplements so far. I'm still trying to figure out a good way to organize all this so I don't forget anything AND everything is out of sight/reach of the little ones. I actually have no concerns whatsoever about Owen taking anything when he's not supposed to, he's so sick of taking medicine. Brenna is a different story though. She feels totally left out when it comes time to take meds. We do give her vitamin D and a multi, but she would gladly take his too I think. A lock box is pretty necessary, but then I find I forget to give him some of the supplements. The K Phos neutral especially since it can't be taken with any of the other stuff. I'm trying to come up with a wipe off chart or something, but I haven't totally figured it out yet.

Progress?

 Why on earth am I showing you the overflowing garbage can in the kids bathroom?

Well, for one, people are always asking me how I get everything done (Owen's medical  care, gardening, sewing, knitting, homeschooling, etc.) and this is proof that I don't!

 Second, I've posted about how I'm the only person in the house who knows how to change the toilet paper roll. We finally have another person who has figured out how to change it. The only problem is that she is so excited about her new found ability that she has been UNWINDING the remainder of the roll so that she has a reason to change it! Not exactly what I was aiming for. Maybe it's a start!?

Mystery Solved!

 We recently had a mystery at our house. Last night my husband moved the couch so Duncan could clean behind it (Duncan is currently responsible for floors) and "The Case of the Missing Cotton Balls" was solved.

 See, we have to test Owen's ketones regularly with urine test strips. Owen still isn't potty trained, we're hoping that will change if we can start reducing his medications, but for now he still doesn't seem to be able to use the toilet with any consistency. So, we do the test by packing cotton balls in his diaper and squeezing them over the test strip. Fun, I know!

 About two weeks ago, I changed Owen and stuffed in his cotton balls (Yes, all the boys think it is hilarious that Owen has cotton Balls. Ha Ha, get it?) Only when I went to change his diaper and test his ketones, the cotton balls were gone! Where did they go? How did they get out of his diaper? He hadn't taken his diaper off and I KNEW I'd put them in, but they weren't there. We looked almost everywhere, except the place they actually were, of course. I didn't know when they'd fallen out (been taken out on purpose, been magically vaporized), so I didn't know if they were already wet or not. I'm not exactly the world's greatest housekeeper, but the thought of urine soaked cotton balls hiding SOMEWHERE in my house was not a pleasant one.

 Last night Rod moved the couch so Duncan could clean the floor under it and maybe find some missing items. We were hoping to find the sticks to the  Popsicle molds and a remote, but we also found the missing cotton balls! I guess the mystery still isn't completely solved since I still don't know how they got there, but at least I'm not worried about where I'll find wet cotton balls anymore. No, I'm not going to tell you if they had already been wet on or not!

Beads of Courage!

 Owen got a very special package in the mail yesterday. Last year when we were going through all the medical issues I blogged about here and here, I learned that Beads of Courage had a distance program for kids whose hospitals didn't participate in the program. I filled out the form for Owen and received a notice that the distance program was closed to new patients. They expected that the program would open up again after the first of the year. A few months later I had completely forgotten about applying.

   A couple of weeks ago, I got an e-mail saying that the program had opened back up and Owen was accepted! I got to work right away counting up Owen's eligible treatments and placing his first order. The first order is called a "catch up" order and is a little different from future orders. "Catch up" beads consist of special beads and one bead from each eligible category. From now on Owen will get one bead each time he receives a treatment.

 I was a little shocked when we opened the box, I hadn't expected so many beads! There are a few treatment categories that still get catch up beads for each treatment, not just one per category and Owen had a lot of beads in those categories!

 Owen spent over an hour playing with his beads and stringing them. He was so cute holding the booklet explaning what each bead represented and "reading" what each of the beads was for. Luckily he decided that rainbow beads were his favorite since he got more of those than anything else.

 It is really amazing to have such a tangible representation of everything he has gone through. Owen wore his beads all day and was just beaming. The amazing thing is that this is only a small portion of Owen's treatments. One bead on this string represents ALL of his ambulance calls. Another bead stands for all of his clinic visits. Twelve EEG's are shown with one bead. If we had been on this program from the very beginning, I don't think Owen could wear his beads and still be able to stand up!

Owen pointing out what his beads stand for.

 The star bead is for having his PEG tube put in. The rainbows are for care team visits. The bright pink one at the bottom is for ALL of his ambulance visits( almost 40).

  The oval millefiori beads each represent 100 treatments, Owen has 4 of those and a good start towards his fifth! Owen is part of the chronic illness program. There are a few other specific programs, but in his program there are only two categories he didn't earn beads in.

 I'm so thrilled that we were able to start this now with Owen just initiating the ketogenic diet. This is such a great incentive for him. He's old enough now to understand that he will be eligible for beads after all of his procedures as well as for complying with the diet. I have to admit that it's also great for Rod and I to have such a tangible reminder of everything we've all been through. I just can't say enough good things about this program!

Keto Update!

Monday was Owen's follow up appointment with his Keto team. The big news is that we will be increasing his calories after all. I just posted here about cooking meals ahead and getting them in the fridge and freezer. Changing Owen's calories means re working all of his recipes. Which means that all the meals I pre-made would be worthless. Luckily I'm smarter than that. I convinced Nurse Jenny that we should just add on to Owen's bedtime snack making it closer to a meal! I managed to come up with a few little dessert treats that I can add to the yogurt he already gets. This has the added benefit of giving him a special incentive to finish his medication and supplement laden yogurt. Once he finishes the yucky tasting stuff he gets a cookie or candy (sweetened with Stevia).

 We also went over the results of the bloodwork from our last appointment. The good news is that everything was normal except for his carnitine and his acidity. We will be adding a carnitine supplement and trying harder to get his baking soda down him. We sort of gave up on the baking soda for a while as we were having such a problem getting him to eat it.

 We will see the neurologist again in November. This time they gave us the lab packet ahead of time so we can have fasting labs drawn a week or so before the appointment so we can go over the results AT the appointment. I really prefer having the test results at the appointment to having to go over them on the phone later. It makes things so much more convenient.

 Morgan and Brenna came along with us this time. Brenna since she is still nursing a few times a day and Morgan because she has been feeling really left out lately with all the attention on Owen. After the appointment, we stopped at the fabric store and picked out the fabric for Morgan's elf outfit. We have a Lord of the Rings/ Hobbit party to attend next weekend and she will be able to use the same costume for Halloween. That made her feel a little better!

Weekend Cooking

Owen' chocolate cake

 I have been a big fan of bulk cooking for a long time. I don't usually do the whole "cook for a day, eat for a month" thing. What I do is just to make multiples of meals as I prepare them and then put a couple in the freezer while we eat the rest. I also will buy lots of meat when it is on a really good sale and prep it before I freeze it. For example, chicken breasts were on sale recently, so we purchased several packages. Once we got home, I divided them up into meal sized portions and made sauces for some of them before I put them in the freezer. I also cut several meals worth into cubes before freezing since we use chopped chicken in a lot of our favorite meals. I always buy hamburger in large packages. Usually we will have hamburgers for dinner that night and I will pre-brown the rest and freeze in family sized portions. It is so much more convenient to have the hamburger already browned to add to spaghetti or other casseroles and soups.

 I have avoided making lots of Owen's keto meals ahead of time because I didn't want to have to throw out a bunch of food if his calories or ratio changed. He seems to be doing well where he is now though (unless he cheats!) and it is looking like we will stay with the current prescription for a while. We've also started school and I've discovered that there is no way I can be available to help the kids at the level they need right now while spending several hours making Keto meals everyday.

 Rod and I have been marathon cooking on the weekends so that I have enough meals to make it through a week of school with out having to do much cooking for Owen. This weekend we made 12 Macadamia nut pancakes. Owen ate 3 of them over the weekend and the other 9 are packed up for use this week. Now all I have to do is weigh out whatever fruit or vegetable he wants with his pancake for each meal. Yes, Owen eats vegetables with his pancake! The pancake is egg and nut, so it actually goes quite well with veggies. A special thanks to my Mom who watched us spend hours grinding and chopping macadamia nuts and sent us her Ninja to use instead.

 I also made 3 batches of spinach bites. Owen ate one for his dinner Saturday and the rest are in the freezer for this next week. I've been trying to get more iron in Owen's diet and it turns out that he loves these. I also got 5 cheese sandwiches made and stored, again Owen ate one, so 4 went into the fridge and freezer. I missed getting pictures of those, but we use Ketocuisine to make his "bread".  Last, but not least, I made a weeks worth of his yogurt snack that he takes his medication and supplements in.

 We still had a few things left over from last weekend, so that gives me enough meals to not have to cook for Owen more than once a day. It generally takes me 30- 45 minutes to prepare one meal, but due to some twist of the space-time continuum that I don't completely understand it only seems to take an extra 15 minutes to make as many multiples of that meal as I want. So even when I end up preparing meals during the week I still make a few extras each time. Being able to get ahead helps a lot toward making the diet do able for us.

Sleep Deprivation

 This child has been cutting teeth. She has NEVER been an easy teether. As we say around here, Princess doesn't do pain. So, whenever she's teething, she doesn't sleep without being doped up on Tylenol. I've tried teething tablets with no noticeable difference. We bought her an amber teething necklace which has helped a little. She no longer screams all day long, but she still doesn't sleep worth a darn. Which also means that Rod and I don't sleep worth a darn. These pictures were taken after 3 nights of being awake from 1:00am- 5:30 am and not taking naps. She was finally so tired she fell asleep just like this.

  Owen's medication keeps him from falling asleep easily.  He often doesn't finally fall asleep until midnight.  The doctors have assured us that that isn't a side effect from the drugs, but we have noticed a definite link between med increases and trouble sleeping, so I'm going to assume it isn't just my imagination. Owen also was a great sleeper until he started taking all the meds.
 Most of his bad seizures happen while he is asleep, so we have him sleeping in our room still. He doesn't make any noise during the seizures, so we sleep with one hand on him all night. Obviously that doesn't help us get a great night's rest either.

  I honestly can't remember the last time I got more than 6 hours of sleep in a night and that usually isn't in a row! Brenna has been sleeping better at night when she isn't teething and she's almost done with everything except her 2nd year molars, but Owen still wakes up several times after not going to sleep until at least 10:30. We're really hoping the ketogenic diet works well enough that we can reduce or eliminate some of his meds so maybe he'll sleep again.