swingin' with big brother

You all know now that Delaney's favorite past time is swinging.
She absolutely loves to go out back and swing.
But she was a little surprised when I took brother out to swing too.

Doesn't that look like a super comfy swing? Perfect weather. Perfect swing. Perfect kids!!

nate made the news!!

Nate's school (and mine) received over $1600 after a fundraiser last spring. All the schools participated and our school earned the most money. The $$ will be used to purchase technology and other items for the school.

Nate was selected to be his classroom representative for this photo that was in our local newspaper.

Go Nate!!

kindergarten

I still can't believe Nate is in kindergarten!
Even though he's 6 and should've gone last year, it just doesn't seem possible that he's old enough to be a kindergartener.

I had to leave before Nate was out of bed so I snapped a picture of him as he wheeled past my classroom (I love having him in my building!)
Not the greatest of pictures, but I didn't have time to get the perfect shot. I had a room full of students and Nate was already late.
Yeah, the bus tends to run late.

Nate went all day on the first day. Our school has an all-day kindergarten program.
But normally he'll go at 10 and stay the rest of the day.

He slept off and on throughout the day.
Pretty typical for him.
But at least he stayed awake for his little art project.

sew fun

I really do enjoy sewing.
As long as I have a project in mind. Nothing practical. No mending.
But I love creating. Especially when I'm not working from a pattern.

Nate NEEDS to wear a onesie underneath his clothes to help keep his diaper on. When you have a kid who has no butt and rolls around on the floor 10 hours a day, a onesie is necessary.
Problem is, you can't find onesies bigger than 4T.

So mama got creative.
I started out with a large sleeveless t-shirt that I found on clearance for $3 (bonus!!).

I made a pattern (sort of) using his current shirts and onesies, modifying the armholes, taking in the sides, and creating a snap crotch. Or velcro. Whatever.
But I couldn't find anymore of the sleeveless tees, so I had to resort to sleeveless undershirts.

So here's what I've made so far. They're kind of my prototypes. I think we'll try them out for a few days and decide what we like and dislike about them.

I used appliques to create an access to Nate's feeding tube. That way we don't have to undo his shirt for feedings. Yes, I'm all about making life easier!!

Nate is modeling the first shirt I made. Instead of the applique, it has a pocket for his g-tube. I know I don't like it as much. For one thing, it was a PAIN IN THE BOOTY to make. And it's not as easy to get to his tube. Hopefully the appliques hold up. Because I really don't want to make more pockets!!

I wanted to share my project with you. And when Mama Kat announced her prompts this week and one was to share something you've made by hand, I decided the timing was perfect. I guess this counts as something made by hand. Technically it was made by a machine. Hmmmm....

hospital sedation

Nate gets botox injections in his hamstrings periodically to help with the spasticity in his legs. Did you know that botox started out as a therapeutic medicine? It's not just for wrinkles!!
It's a quick procedure but he has to be sedated.
So we checked in at the hospital at 6:30 am Monday morning. Not a fun way to spend our last Monday of summer! Not fun for my mom either who had to be at our house at 6:00 to stay with Delaney.

We've gotten to know the nurses in pediatric sedation pretty well over the past few years. We see them more often than some of our extended family!

Nate is such a trooper during pre-op prep. For this procedure he doesn't have to wear a gown. But he does have to get an IV. No tears. Such a brave boy!

I stayed in the room during the procedure.
I was hoping there'd be just a little botox left over. And maybe he'd offer me a little for around my eyes.
No such luck!
The neurologist does the injections. A pediatric intensivist administers the medicine and monitors his oxygen and heartrate. The nurse hangs out and does what nurses do. I sat in my chair and read, watching the procedure out of the corner of my eye, trying to look as wrinkly as possible.
Jeremy headed to the waiting room. He doesn't do needles.

The procedure took maybe 15 minutes. Nate laughed through the whole thing. I think the drugs made him loopy. Then he crashed. He slept for about 2 hours. A deep sleep.

Once he finally roused around, we gave hime some clear liquids, the nurse took out the IV and disconnected him from the monitors. And we were on our way.

See the little yellow pillow? The kids get those every time they are admitted.

We have at least a dozen.
If you need a little pillow, let me know!

nate...part 3

If you haven't read parts one and two, you can go back and check them out.

Before I continue though, I want to back up for just a moment.

We had hung out at the NICU at the hospital long enough to know a few things. First we knew there was no McDreamy or McSteamy at this hospital. However we did meet our share of McScaries and Dr. Poorbedsidemanners. Second, we knew the routines, which was huge for me. The people that buzzed us in knew us well. The nurses let us talk on cell phones at bedside. And we knew there were special conference rooms for parents to meet with doctors. We knew we definitely never wanted to be called into one of those rooms. (Can you feel the foreshadowing?)

Yes, we had our "meeting" with the neonatologists and neurologist and they told us they'd like to transport Nate to Kansas City to the children's hospital, where there was a geneticist on staff. Up until this point, the doctors had been consulting with geneticists about Nate's case.

So on a rainy Thursday in April, Nate and I headed to KC in the transport ambulance. Only one parent could accompany him and Jeremy had classes, so I went and my parents drove up separately to meet us up there. Nate rode in the back, of course, along with a respiratory therapist and a nurse practitioner. I had the pleasure of riding up front with a driver that totally sucked at small talk. That was one.long.ride.

When we did finally arrive, they whisked Nate away to get him settled in his room. The NICU was full, so he was admitted in the PICU. I had paperwork to fill out and I wanted to find my parents. So I grabbed my cell phone and let my mom know where I was. Before I had even hung up the phone, a guy, filling the vending machines no less, scolded me for using my phone. Apparently, they have a "no cell phone usage" rule anywhere in the hospital. Remember, I was used to using our phones at bedside at the other hospital.
Well that just put me over the edge and I broke down and cried. I'm sitting in the waiting room outside the PICU in a strange hospital where I know NO ONE. My son is on the other side of the giant locked doors. My husband is miles and miles away. And I just got yelled at for using my dang cell phone.

The day got better though. I was able to get a room at the Ronald McDonald House, which would become my new home for the next several weeks, and Jeremy met me there late that night.

Jeremy stayed in Kansas City from late Thursday night until Monday afternoon. Would go home for classes on Tuesday and Thursday and then return again for the long weekend. We got into a good routine. We had several visitors. People we knew. People who were friends of friends. Relatives I didn't even know I had. My best friend Amy even came up and stayed several nights with me, which was so nice. You know who your true friends are when they are willing to have a sleepover at the Ronald McDonald House!!

So back to Nate.
He saw every specialist you can imagine. And they did every test they could think of. Everything led back to one decision. He needed a tracheostomy and feeding tube. By this point, we were just ready to do whatever we needed to do to get our baby boy home.

Then Nate tested positive for RSV. He was placed in isolation and we had to wear a gown and mask to visit him. And we were told he could not have surgery for several weeks. Fortunately, after the culture came back, we learned that he'd had a false positive so surgery was back on.

One of the scariest days in Kansas City was the day before his surgery. Not because of my fear of my child going under anesthesia. Not because of my fear of the unknown with his care. But because of tornadoes!
We started noticing the nurses running around, dropping off blankets in the rooms and asked what was going on. We found out we were under a tornado warning and the storms were headed straight for us. When I asked where they take the patients, the nurse told me that they take most of them to the hallway. But Nate was on the ventilator (yes, they had put him back on the vent the day before to allow his body to rest prior to surgery) so they would cover him with blankets to protect him from breaking glass. Now this was not something a mother wants to hear!!
Thank goodness the storms completely missed us.

Nate's surgery was on May 5. In addition to the trach and feeding tube, the doctor also performed a fundoplication, which prevents vomitting, which in turn would help with the aspiration.
It was amazing how much better Nate looked after the surgery. His coloring was better. His heartrate was lower. He was awake more often.



Following surgery, Nate was on the ventilator and was gradually weaned off it and oxygen. The surgeon performed the first trach change and then we were finally moved to a private room. We were taught how to feed Nate and do all his trach care. We took a class in infant CPR.

And finally it was time to head home. So we packed up our car with all the usual baby necessities, suction machine, pulse oxymeter, portable oxygen tank (just in case) and all the other medical supplies we might need. We could barely fit the baby in the car for all the medical equipment.

We had finally made it home!! After 7 and a half weeks in the hospital, we had Nate at home with us.

And knowing we could never fit our whole family and Nate's medical equipment in our current vehicle, we bought a mini-van the next day!!

summer school

Yesterday Allison and I paid Nate a visit at school (Bri is away at church camp this week). I think he was surprised and excited to see us.

One of his favorite things to do at school is hang out in the ball pit. Yes, he was at school, not at McDonald's Play Place.

Nate was working on an art project. He has to pick the color he wants by touching it or vocalizing. It was neat to see him making choices.

Summer school will be over next Thursday. It's been a little different this year. All the students have multiple disabilities like Nate. Most are in wheelchairs and do not communicate with speech. In the past, he's been in an early childhood summer program where he had the most significant needs.

It was a great opportunity for Nate and hopefully we can continue some of these programs as he enters kindergarten in the fall. The plan for right now is that he will be fully included in the regular classroom with an adapted curriculum.

this and that

Did you notice my new blog layout? I changed it to a 3 column format (thanks Kristine!!) so that I can cram even more crap cool stuff onto my page!!
On the right side bar I've added "Good Things" which are just links to fun places to go or things to do. I only have one link on there now. It's to a coffee house in Winfield, KS.
I had lunch there yesterday (yes, while my dear hubby was writhing in misery trying to sip water and swallow jell-o) and it's just the cutest little place. She has turned a bungalow style house into a coffee house. She serves all sorts of coffee and tea and has a wonderful lunch menu.
And in the summer she has live music on the lawn on Friday nights.
Oh and did I mention the owner is my grade-level partner's sister? So it's an annual tradition to head down to her place for a summer lunch.
Thanks Blenda for the yummy food!

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When I took Delaney out to swing earlier in the week, I noticed these hiding behind my rose bush.

They were laying down on the ground so I thought I'd better cut them and bring them in the house to enjoy. After all, I didn't even realize they were there!
The lady who lived here before us did a wonderful job with planting flowers. I have all sorts of flowers that pop up year after year.
The smell of star gazers remind us of hospitals. After our car accident (10 years ago) when I broke my neck, my hospital room was filled with enormous flower arrangements, some with star gazers.
Isn't it weird how smells can bring you back to certain events in your life?
Every day I'm reminded of elementary school when I walk by the school cafeteria. The smell of school lunch never changes!

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Some artwork by Nate:

Nate is in summer school and this is the first piece of artwork that he has actually done all on his own. Melissa, his nurse, usually holds his hand and helps him with whatever art projects or crafts they are doing.
I would've actually kept the original, except the glitter was making a mess on everything.

So I decided to snap a picture of it. And this way, you all get to enjoy it as well!

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Jeremy update:

We are on day 3 which I've heard is THE WORST. So far, he's handling the pain like a WOMAN! Ha!! He knew going into this, that it wouldn't be a piece of cake, but he's not been a complainer at all!

Yesterday he ate some scrambled eggs, mac and cheese and had 2 scoops of chocolate ice cream (courtesy of our Sunday School class, delivered by Kristine...thanks, again!!)

One of his biggest discomforts is his tongue. It is swollen to almost twice the normal size. I gave him Benedryl last night, in case it was an allergic reaction. This morning I called the doctor's office and they said it is most likely caused by the retractor used to hold his tongue down during surgery. It's not common, but happens with some people.

It isn't impeding his swallowing or breathing, but I know it is uncomfortable. Hopefully the swelling will go down soon.

Thanks to everyone who has been praying for him. I think he's a much better patient than I am nurse!!