Sleep Study

Last week Kai went in for a sleep study.  The purpose of the study was to assess how he is doing overall, and to see if lowering his vent settings would be a possibility.  We set up an EEG along with the sleep study to monitor his brain activity, since the seizures we have been seeing have mostly been while he sleeps.

He did pretty well during the sleep study--he slept from about 12:30-3:00, but from 3:00-5:00 he was very upset and refused to be consoled.  Needless to say, not much sleep was accomplished from that point on.

Since the sleep study is considered outpatient, we had to bring ALL of Kai's stuff.  His humidifier, feeding pump, stands, food, pulse-ox, etc.  It was a lot to haul and the room was pretty small.  The "bed" for J (I stayed home with the girls), was a chair which "folded" out.  Basically the cushion extended.  J was very irritated that there wasn't a rocking chair to help soothe Kai while he was fussy. 
As you can see, it wasn't the most comfortable get-up for Kai.  Each wire you see is attached to his head by a different probe.  Frankly, it's amazing he slept at all, but they were able to get the data they needed from the few hours he did get.

The results are in, and I have to say, as I listened, my heart sank.  Kai has been doing so well, I had gotten my hopes up about lowering his ventilator settings, and possibly weaning him off the vent.  The news wasn't bad--he is doing fantastic with the settings they have him on now, so the settings will remain the same.  His CO2 levels and PH are right where they should be.

As for the EEG, we need to follow up with neurology (oh joy) to understand everything, but they noted sharp waves which are suggestive of focal cerebral disturbances and seizure tendency.  They also said that his background activity is slower than expected for his age.

We had an appointment with neurology a couple of weeks ago, and the doctor said that with seizures, the more you have, the more your brain and body get used to them, the more you are likely to have.  Eeeps.  We haven't seen any noticeable seizure activity recently, so hopefully he isn't having any that we aren't catching.

ENT also took a look into Kai's ear (again), because his ear has been actively bleeding once again.  They discovered granulation tissue in his ear!  The reason it's bleeding is because the granulation tissue is being irritated.  So Kai is in extreme pain from his ear.  Poor little guy.  There really isn't much we can do--we have some ear drops and we are giving him Tylenol for the pain.   It is hard to see him suffering so.  It breaks my heart.  His ear just refuses to heal.  Since March he has had somewhere around eight ear infections, and now granulation tissue.  Whatever the ENT did when cleaning his ear really messed his ear badly.

Hopefully we will be able to get his ear cleared and have him feeling better soon.

The Days Fly

 This summer has been so busy!  With school back in session, I thought for sure I would have more time to be able to get things done, but it seems as though I have even less time!

River and Kai keep me very busy throughout the day, and once Zuri gets out of school things get even more crazy.  Never fear, however, I have some great posts in the works, and lots to catch up on.

The next few weeks are going to be pretty busy, but hopefully by the end of October, things will settle down.  Once River discovered the art of crawling, she is into everything.  I mean everything, and it all goes into her mouth.  It doesn't matter how many times I vacuum, she will inevitably find something.  She even pulls the fuzz from the carpet and puts it into her mouth.

I will chase after her, calling her name.  She thinks it's a game and will squeal and crawl at top speed to get away from me.  When I catch up to her she laughs and laughs.  Until I take away whatever it is that she is trying to put in her mouth, then she gets really mad at me.  Little stinker.   She has a definite mind of her own. 

Japan: My Arrival

Lake Tahoe from the airplane

 As I was checking into the airport on my flight to Japan, J noticed another older couple from our neighborhood also at the airport.  I continued through check-in while he went to talk to them.  Turns out the wife was flying to Japan as well, and had the same layover in San Francisco.  She was flying into Narita (Tokyo), while I was flying into Osaka, so we were on different flights to Japan, but we spent the time together before our flights to San Francisco and Japan.  She was going to Japan to spend a couple months helping her mother who had broken her arm.

I had never traveled outside the United States before, and flying on my own to a country where I didn't know the language was a little nerve wracking for me, so it was really nice to spend the time with a familiar face to keep my mind otherwise occupied.  I knew once I reached Emily, I would be fine, but I was nervous navigating the airport (if you know me, you know I am directionless--it used to be a joke that I would lose my way inside a paper bag). 

I was also supremely excited.  It had always been a dream of mine to go to Japan.  I was looking forward to spending almost three weeks traveling with my sister, who had been living in Japan for the last two years.

I was a little sad to be leaving J and the kids behind, but I knew they would be in good hands.  I had a nurse planned for the daytime while J was working, and J's mom came up to take care of Zuri and River for the time that I was gone.  The hardest part was that I had been nursing River full time and we had been unsuccessful thus far getting her to take a bottle.

Suzanne wasn't worried, however, and said that once River got hungry enough, she would eat--and she did.  It took less than a full day.  For me, on the other hand, it took about five very painful days before my milk decreased to a point that I didn't need to worry about bringing my pump along with me as we went out.  The worst day was the first--the plane ride.  I even had to pump in the little bitty airplane bathroom.  Not fun, I tell you. 

Getting through customs in Japan wasn't too bad.  It was a little bit like in the U.S. where you have to go through two different stations, but everything went smoothly.  They had signs in English which helped to point the way.  Everyone was really friendly and I managed to get my luggage, get through customs, and find my way to Emily without any problems.

 I had been able to get some sleep on the flight, so although I was basically losing a day and a half, I was able to adjust to the time zone rather quickly (that wasn't the case coming home, though).  I had bought a Japan Rail Pass before leaving the States, so we went to the JR office and picked up my official Japan Rail Pass, and took the train from Osaka to Kyoto.

I was enthralled with the scenery as we sped our way to Kyoto.  It was fun to see the rice fields right in the middle of things.  Urban area....rice field!  Homes....rice fields!  I also noticed how compact everything is in Japan compared to here (the next day really brought it to light).  Their homes are placed right next to one another, sometimes barely an inch separating them.  Since Japan is an island (series of islands), space is very limited, and land is expensive, so they make use of every bit.
 

In the airport in Osaka, I saw this baby seat inside the stall in the restroom (I also saw it a few other places as well).  I thought, how clever! I wish we had those in the U.S. (I have since been informed that there are places that have something similar in the U.S., but I have never seen one).   You can put your baby in it while you use the bathroom.

 I don't know why, but this sign really struck me as funny at the time.  Duly noted: no gargling in Japan. 

 

We arrived in Kyoto just as the sun was setting.  In Japan, even in the summer, it gets dark around five-thirty/six-ish.  We walked from Kyoto station to our hostel, then went back out to eat.  I had my first official Japanese meal--udon (it's a tofu soup)!  It was so yummy.  

I was fascinated not only by the things that were different, but also the things which we have here that are also there--example, 7-11, which I would have never thought would be in Japan, but it was very much commonplace in Japan (at least the part of Japan that I visited).

Our room at the hostel.  Before flying out, Emily asked me if I wanted to stay in hotels or hostels.  I told her that I would love to experience a hostel, so we did!  It was so fun, and although we slept on tatami mats and what you see on the floor was literally our padding and blankets folded, it was one of my favorite places we stayed on our trip.  

 It's hard to see in the picture, but the design on the cupboard was really pretty.  I should have taken a close-up, but I was more trying to get the scope of the room at the time.  The end of the tatami mat (our bed) is where the my suitcase rests just under the cupboard.

The hostel was really neat.  You took off your shoes and placed them in an open cubby as you enter the building.  The kitchen was set to the right, just after the check-in desk, and our room was on the second floor.  The bathroom had open sinks and then a men's/women's stalls (for lack of a better word).  To the right of the sinks and toilets was the shower. 

 My soup!

Kyoto tower at night as we walked back to our hostel from dinner.  After dinner we went to bed, so that we were nice and rested for the adventures the next day!

8 Months

Eight months have just flown by.  This little one is crawling!  She perfected crawling a few weeks ago and is unstoppable now.  She is into everything--especially that which she shouldn't.  She doesn't like to sit still (as evidenced by my pictures--I wasn't able to get one with her legs stretched out this time). 

She is already fiercely opinionated.  If you take away something that she wants, or won't let her get it, she will throw a fit--a huge tantrum.  She will aim for something with single-minded determination.  

This Little Miss loves to follow her big sister around.  It becomes a game with the two of them.  Zuri will go slowly enough that River can keep up, but just out of reach.  They will go all over the house.  It's fun to watch, and I am looking forward to when they will really be able to play together.

School Days

School is once again in session!  Zuri is transitioning into a full day with first grade, and Kai is back to preschool for a few hours a week.

Zuri is enjoying first grade so far.  She was nervous about being able to find her class, but she hasn't had any problems.

I was nervous about her being at school all day, and especially her eating at lunch.  J and I decided to have her eat the school's lunch, thinking that it might encourage her to eat more than if she brought lunch from home.  I'm not sure if she is eating anything other than the chocolate milk, which she is so excited to tell me they serve.  She really wants a lunch box, and although I tell her that she is getting lunch from school, she continually talks about getting a lunch box.  Funny girl.

We had fun taking pictures for her first day of school this year.  She was very excited, and has several people in her class that she is friends with.  I love watching Zuri with her classmates because they are always so happy to see her--and she to see them.

Kai was still not feeling the best on his first day.  We debated letting him go to school, but in the end we thought he would be okay.  He did fairly well, and made it through the two hours in class.  If I hadn't been so sick and dealing with a sick River, it would have been really nice to have the time with just River and I.  It's going to be so strange to have the house so quiet!

 His second day of school, Kai did much better, and was very happy throughout the day.  He smiled and was making his noises as they did their activities.  I think he will enjoy school much better this year as he gets used to the routine.

 

He was all tuckered out from class, but he got a sticker!