Lift

With new, bigger wheels comes a much heavier, less portable chair.  We had three options: continue with the current set-up, but have another adult always help with the load/unload; buy a bigger vehicle with a wheelchair accessible ramp; buy a lift.  We opted for the last option.  After researching and looking around, we finally found an affordable lift on Amazon, and we are quite pleased with the results!  I don't have to worry about lifting the impossibly heavy wheelchair or taking seats in and out of the car anymore.  So nice!  

New Wheels

Two months after we were supposed to get Kai's new wheelchair, it finally came!  Hooray!  It was really interesting to watch the process, because the wheelchair was completely assembled when we arrived. They promptly took it apart, starting from scratch.  It took them over three hours to get everything all customized for our big guy, and while I wasn't one hundred percent happy with his alignment in the chair, we were all ready to be done.  The PT at Kai's school has helped with that, making some adjustments to help him sit a little better--still, his head tilts and droops more than I would like.  I had been anticipating better support with this new chair, and I even mentioned it a few times before we left the clinic, but it still wasn't completely resolved.  Like I said, after over three hours, we were all done, and it was cutting into their lunch break. 

Other than that, we love the new chair.  It fits through doorways; super hooray!  It is longer length-wise, so it makes maneuvering around smaller rooms tricky, but it fits through a standard doorway, which was a huge issue with his old stroller. 

Old stroller

New wheelchair, out of the box--before disassemble

dismantling new wheelchair

all smiles as we wait for the new wheelchair to be customized to fit

Customizing new chair to Kai

All the bags have their own places!

All done!  Look at me--I'm styling!

Photobombed by the Monsters Inc. crew

Looking at the mural waiting for daddy

Had to show off new wheels at Daddy's work

Off to school!

Back to School

It's already that time of the year--back to school!  I can't believe that I have a third grader and a kindergartner.  Time really does seem to fly faster every year.  We've had a very busy summer, and autumn doesn't seem to be slowing down very much for us. 

Zuri was really excited for third grade.  She had more nerves than normal going into back-to-school night, but after meeting her teacher and finding out she knows some of her classmates, she felt better.  She is loving third grade so far.  Some of her best friends are in a different class this year, so she is making new friends.  She is in the elementary school "crush" phase.  Looking back, I remember going through it myself, but as a parent it is harder for me to know how/when to draw the line between acceptance and teaching.  There are a couple of boys that she really likes and one she calls her boyfriend.  They play kissing tag--where she chases him and says she will kiss him.  Yes, my little Zuri is the instigator.  To my knowledge she has never actually caught him and kissed him, but that is the part that is hardest for me.  Intellectually I know that it is just kids being kids--I did it myself--but the adult/mother part of me wants to make sure that she understands he isn't really her boyfriend and that she shouldn't be kissing boys so young, and yadda yadda yadda.  I can feel my younger self already rolling my eyes and tuning out.  This parenting thing is hard.  ;-)  All I can do is teach her and hope that she listens better than I did. 

Kai started kindergarten!  Five days a week in school for a few hours.  I'm excited for him and for the new experiences he will get.  He loved preschool and we saw genuine growth.  Had we not had such a positive experience with preschool, I would have been apprehensive with him starting kindergarten, but it's a great school and I'm looking forward to not only the experiences he'll have, but the break for me. 

The day prior to his first day of school, his bus driver contacted me and said that she would be at my house at a specific time.  Imagine my surprise when she showed up a full fifteen minutes early!  She told me they changed her route on her.  So I scrambled to get Kai ready.  His school nurse arrived and because we were in a hurry, his suction bag was left behind.  I took the bag to his school, which was both a good and bad.  It was great to see his class and how everything was going, but when I got there, Kai was upset.  If I hadn't had the girls with me, I would have stayed in his classroom longer to keep an eye on things.  As it was, I dropped off the bag, and only loitered a few minutes.  His school nurse is wonderful and was already working on getting him calm.

He had been happy all morning, and happy on the bus.  I think he was expecting to go to his preschool class, so a new class and setting was a surprise.  I think it'll take a couple of weeks for him to settle in before he's really comfortable.  Two weeks seems to be his adjustment period for new things/people. 

Overall, we're looking forward to a great school year!  New experiences, new friends, and lots of fun!

Sprint Trials

A couple of weeks ago, Kai had trach/vent clinic.  It's a clinic where he sees several specialists in one visit---ENT, pulmonology, dietitian, general specialized pediatrics, and occasionally genetics and orthopedics.  Kai used to have trach/vent every six months, but since he is doing so well, he has been relegated to once a year.  We still see the specialists throughout the year for one-on-one visits, but it is really nice to have the whole team on board for his care plan.  Trust me, communication between doctors doesn't always happen, and miscommunication happens very frequently.  In fact, as of trach/vent clinic they still had recorded that Kai has a cuffed trach (he's never had a cuff).

At his latest trach/vent clinic, it was the consensus that because he has been doing well, and with the Magec rods having opened up his chest, that we would be able to start Sprint Trials.  A sprint trial is where we take him off the ventilator for a period of time daily!  Whoohoo! --and completely scary for this momma who remembers very vividly the blue spells before the vent.  We will start at five minutes twice a day for a week, then 10 minutes for a week, then 15, 20, 30, etc, all the way up to 4 hours a day.  Since he rides the vent at night, it's unlikely at this point that he will come off the vent while sleeping. 

Today was the first day.  I was a bundle of nerves, and waited until J. was home and the girls in bed so that I could focus solely on Kai (who is supposed to be monitored very closely during these trials anyway).  I didn't go as far as to pull out the ambu bag (but it's always an arms-length away from his bed).  Everything went smoothly.  Kai's heart-rate jumped up a little, but he was also wiggling around and trying to get the pulse-ox probe off his foot.

His sats were beautiful--all completely on his own--no machines or extra oxygen!  As we get farther into the sprint trials oxygen will most likely be needed, but day one was a success!

Eagle Lake

The hike to Eagle Lake is fairly easy, only a mile and about 420 foot climb in elevation altogether.  With eight kids in tow, especially the younger ones, it took longer than expected, but overall we had a good time.  River, Zuri, and the puppy loved all the attention from Chantal's kids.  The lake was supremely cold (it always is), so even the kids really didn't want to get in.  The puppy was the only one who really played in the water, but the poor thing was shivering when she got out.

Emerald Bay; you can barely see the island center left through the trees

Interestingly enough, before this trip, I had been rethinking the idea of adding another child to our family.  At times it feels as though I am stretched as far as I can go, and I am comfortable with the family dynamics as we have them now.  Watching Chantal's kids (crazy and chaotic as it was) really brought to light a certain longing for a big family like that of my own.  Growing up in a very unusual family situation, there were times that I functioned as an older sister, but mostly I was an only child; it just being my dad and me.

On the hike, once you go past the falls, you need to have a wilderness permit.  I don't remember having to have one when growing, but we dutifully filled one out at the entrance.  Parking fees are another new thing.  It's sad that everything has to be so controlled now, although I think it may have deterred some people from continuing the hike to the lake because the falls were a lot more crowded than the lake.  There were still quite a few people at the lake, but it seemed that most people turned around after the bridge at the falls (where you have to have the permit).

Another, clearer shot of Emerald Bay

Nana with Pepper--she loved walking the puppy, although I had to take over about midway through the hike because Pepper was pulling too much trying to get to the lead person.  We're still working on that with her

River being cute

Hiking up

Chantal, and Travis holding Bryson

The river with Lake Tahoe in the background

All eight kids together--getting a picture with all of the focused and looking was hard; this was the best one

Lake Tahoe; the view was breathtaking

I guess we should have brought the hiking carrier; J. ended up carrying River most of the way

Cute Zuri--always doing poses

More poses--Brooklyn and Zuri

Bradley and Maddie

Taking a quick break to let other hiking on the opposing side go by; the puppy was eating up the attention from the kids

Zuri hiking

Eagle Lake! We made it!

This was the first time the puppy has been in water where she has to swim because it's over her head.  It took her a bit to learn but she loved it

The kids waded to the rock but huddled together on the rock not wanting to play in the frigid water

If you look behind Zuri, J. went across to the small beach area with River but no one else wanted to be in the water long enough to go across

hiking back

She almost fell asleep like that

One last glimpse of the lake

A pooped-out pooch!

Zuri taking selfies on the drive home.  I had no idea she was doing this, haha!

River was exhausted--it is a very rare occurrence for her to fall asleep in the car.  Her nap lasted less than an hour, but was still much needed!  The girls were both awake the majority of the ride home

The moon rising.  It was huge in the sky; this picture doesn't do it justice