Friday, September 12, 2014

Baby Hat!

I know I just said how I don't do much knitting in the summer, but it's starting to get colder and I've started knitting more. The other day I was just dying for baby stuff. I don't really need much baby stuff with this baby though. We replaced most of our hardware ( crib, changing table, car seat, swing, bouncer) with the last two kids since after 6 or 7 stuff starts to wear out. The only things I really need for this one are a few weather appropriate clothes and since we don't know gender yet, I can't really shop for those. I bought the Hudson Hat pattern a long time ago and hadn't gotten around to actually making one, so I dug through my stash yarn for something gender neutral and finally got this one made up.
My gauge was a little off, so I followed the newborn instructions and got a 3-6 month (I'm guessing) sized hat. The only other change I made was to eliminate the tassels from the bottom of the ties. I didn't want to take the chance of baby biting them off.

Thursday, September 11, 2014

Dedication Hat

As usual, I haven't done much knitting this Summer. For some reason, I just don't knit as much in the Summer. I even bought some gorgeous cotton yarn this year thinking that maybe I just don't like using wool in the summers, but nope. It didn't seem to make a difference. I did finish this hat for baby Carlitos though.
Brenna had to test it for me. Her head is actually only an inch bigger than Carlitos' since she's so petite. Her chest measurement is only an inch bigger too. Little Kevin-Carlos has grown quite a bit from his 3lb 12 oz start.
He wore this hat for his Baby Dedication Fiesta. Unfortunately I didn't get any good pictures of him in it that day. Something to do with chasing a bunch of kids around instead of focusing on taking good pictures.

Wednesday, September 3, 2014

EEG! {Sept 2014}

Owen's EEG was today. This time we were checking to see if his ESES had improved with the recent Onfi increase. Owen wasn't too happy about being at the hospital at first because he thought he was going to have to stay overnight. We brought his Bug and blankie that he sleeps with since we need him to sleep for part of the EEG, he thought that meant that we were staying overnight. Once he realized we were going home the same day, he was much more cooperative!
Luckily, Owen fell asleep right on command again. This is nice for us since it means we can have day long appointments instead of overnight ones. Once the EEG was over, we headed straight to the neurologists office for the results.  It made for a long day, but it was nice to not have to wait for the results.
So, the bad news is that the EEG showed no improvement whatsoever. Since receiving the ESES diagnosis, we have increased his ketogenic diet ratio twice (basically increasing his "dose") and doubled his Onfi with no improvement at all.
The good news is that Owen has not experienced any of the cognitive declines usually associated with ESES, although we have noticed some pretty major motor skill decline since increasing the Onfi. The next step in treatment would usually be to start massive doses of diazepam in the hospital followed up by EEGs every two weeks. This would have some very serious side effects. Our doctor is just as concerned as we are about adding in so many drugs when he's not currently experiencing problems since the drugs can cause the same cognitive issues we are trying to prevent. We have decided to play things very cautiously. Right now our next step is to reduce the Onfi back down to previous levels since he's having pretty bad side effects and it isn't doing anything for the ESES. If that goes well over the next two weeks, we will continue dropping the zonisimide. We dropped that from 175mg to 150mg a few months ago and it doesn't seem to have caused any problems, so we hope to be able to get rid of that. The next step will be to possibly increase his lamotrigine since he's outgrowing his dose. His blood levels of that are very low right now. After we get rid of a few of the other drugs we will have another EEG in about 4 months and then decide about the diazepam treatment.
At this point Rod and I are relaxing a bit. We've been pretty stressed about the upcoming treatments. It's nice to know that we will have a bit of a break from all of it over the holidays (assuming the med weans go well). I'm also hoping reducing the medications will help with his motor coordination. We were planning on starting him  with writing his letters for kindergarten, but right now he's really not physically capable. So, wish us well on the medication reductions!

Monday, September 1, 2014

Updates {Sept 1, 2014}

A little over a week ago, I finally decided to take anti-nausea medication for my morning(noon and night) sickness. A week later, my insurance company found a version of the medication that they felt they could pay for. So, Friday, I finally started taking it. I have to take 2 pills a day instead of one, since the insurance company felt that the one pill was newer and more expensive than they wanted to pay for, but it seems to be working! I'm now only nauseous and sensitive to smells, not so sick I can barely move. The drawback is that the medication makes me tired, really tired. I could up the dose and possibly not feel sick at all, but I might be too sleepy to function at that point, so I think I've hit an even medium right now. The good news is that just as I suspected, my blood pressure has been going down now that I'm able to eat and drink normally (or somewhat normally). Which is the reason I decided to try the medication after all. At the doctor's office I was in the hypertensive range. Since I started the medication, my blood pressure has been steadily dropping to point where I'm actually in normal range today.
So anyway, the blog posts should pick up a little now that I'm not feeling quite so sick. I've still been managing to get some projects done. I finished converting some jeans to maternity, I finished a hat for Baby Carlitos, and I've been busy gearing up for our new school year. Pictures will be coming soon. I originally planned to start school tomorrow, the day after Labor Day, but Owen has an appointment in Seattle on Wednesday, so I decided that doing one day of school and then taking a day off didn't make any sense. We'll start on Thursday instead. This week I have a movie and some fun projects planned, then we'll get into the real work next week.
Wednesday's appointment will be a big one for Owen. We have another EEG that should tell us if his recent medication change is working to control the ESES. We've made several diet changes so far that haven't changed it at all. I'm hoping the Onfi increase will have made a difference. If not he will be starting an intensive drug regimen that has the potential for a lot of pretty severe side effects. I'm holding off on planning Owen's Kindergarten routine until we get the results of the EEG and set up his next treatment plan since some of the things I had planned to do this year may not be possible for him if we do the new drug treatment. Anyway, we'll have more of an idea what's going on with that after Wednesday.