Year 6 – Week 30 – Day 7

Another month… Where does the time go? I have shared some of this on Facebook already.

April 26th – lunch at Trevor’s favorite restaurant – IKEA. We don’t go anywhere near enough for Trevor’s liking.

April 28th – We got a quick visit from the boys’ Uncle Kevin. After thoroughly wearing him out with a giant nerf war, we took him to Trevor’s second favorite restaurant – Old Spaghetti Factory. After dinner, Trevor still had tons of energy.

April 29th was Brendan’s favorite HopeKids event. The owl picnic! It is a nice little gathering at a park with bouncy houses and pizza and meeting new friends. But there are owls! This year, they brought a little burrowing owl in a fancy house. His name is “Digger”.

Brendan’s buddy from last year, the owl named “Robert”.

Brendan made a mask at the crafting table so that he could talk to Robert.

May 3rd – Random photo from one of our numerous Aquarium trips! We love Wednesdays, the place is empty!

May 5th – We had a visit with the heart surgeon. Brendan’s surgeon that did his other heart procedures has left the hospital so we met the new one. We were really thrown for a loop when he told us that he wanted to wait for the trach to come out first before he would do surgery. We thought we would be getting a surgery date in a matter of days. Now it seems we are caught in a loop. It left us reeling.

May 6th and 7th – Time to get some business done. We rented a little excavator for removing the rest of the big tree from the yard. I hate to see such a nice tree come down, but it was way too big for where it was planted and it was doing a lot of damage. (And bothering the neighbors!)

The roots on this tree were massive

Giant crater!

May 10th – Random photo of Brendan blow drying himself at the Aquarium

May 13th – Random photo of Brendan finding random pieces of clothing and dressing up “like a ninja”.

May 22nd
This was the appointment with Brendan’s ENT. We had a very difficult decision to make about the steps for Brendan. We don’t want to keep losing time but we also want to not put Brendan through any unnecessary risks. In the end, we let Brendan make the choice. He was very eager today to come home without a trach. He insisted. It happened.

“Who let the owls out?” is Brendan’s newest song that he sings all the time. He modded it for today’s special event.

Brendan has been sleeping with perfect breathing for almost 3hrs now. You had better believe I will be awake most of the night listening to him breathe. I am excited for him, so proud, and undeniably nervous. We hope that he took out his last trach tube ever. Brendan says, “Gone for good!!!!”

Year 6 – Week 27 – Day 1

I have gone and done it again. I let a month go by with no posts, but a giant accumulation of photos! Happy half-birthday to Brendan and Trevor! Happy real birthday to Ashley (13 on the 13th!)

I have to divide up into sub-posts again.

Sub-post #1: 03/26 – Trip back to the VLA

We went during the wrong configuration last time, so we had to go back!

Wide open spaces, lots of wind!

Flying kites that look like boys 😉

Today, the array had its back to us

Except for the one, with the sun going down

The boys were freezing!

We stayed the night at a hotel in Socorro, NM and came back to the array in the morning. It was still cold and really windy! The boys played with the solar telescope

Today, they were facing us

The repair facility.

It is a little large!

Sub-post #2: 04/01 – Bumblebee Ranch

We had a really amazing HopeKids event at an entertainment/cattle ranch in Bumblebee, AZ.

There was a really tall zipline

Trevor decided he was going to go!

He jumped!

It took a little encouragement

Wheeeeee!

He’s a bad guy and a sheriff

Time for a fishing break

The pond was pretty, but there were so many kids casting lines, the fish were all hiding. Not a single bite for anyone

Horseback riding!

Brendan’s horse was named Olaf

Trevor’s horse was named Chunky – for good reason, he kept wanting to leave the trail for a snack.

It was an amazing day!

Sub-post #3: 04/11 – Brendan’s heart catheterization

I had to scoop Brendan out of bed at 6:30 to check in to the hospital. He was a little nervous.

But he had “Plants vs Zombies” to keep him entertained.

The cath had three entry points, one in each leg and one on his neck. The doctors were looking at the size of all of his major vessels in and out of the heart, as well as the pressures in his heart and lungs, and lung perfusion. Afterward, he had to lie flat on his back for 6hrs. They knew better than to expect a 5yr old to lie still, so he was kept sedated.

He woke up in a pretty good mood, all things considered, and we were discharged that evening. Brendan’s cardiologist called me the next day with the preliminary results. The team was very excited about the progress that Brendan has made; his lungs are so much healthier now. All of the measurements are excellent, and they deemed that he is ready for his Fontan procedure.

We have a meeting scheduled with the surgeon on the 5th of May. After that, they will schedule the surgery. It is expected to have a 2-3 week inpatient stay for recovery.

Sub-post #4: 04/14-16 – 2nd Annual Easter Campout

We are establishing our new Easter tradition. We camped near Stoneman Lake and had the perfect weather! We drove up Friday evening and got camp set up.

Good climbing tree!

Saturday morning, Brendan’s ostrich laid rainbow surprise eggs. (My papier mache was a disaster this year. My eggs literally imploded and could barely be saved)

The boys didn’t notice, they dug right into them. Ostriches lay eggs full of micro nerf guns, mini slinkies, and candy!

Time for some offroading!

Their friend Olivia will not get out of the Jeep until the battery dies. She loves it! So does Trevor!

Jack takes his driving seriously.

Brendan lets Olivia drive.

The boys were both really excited on this trip, they were allowed to shoot a “REAL gun”. It is actually a single-shot, lever-action pellet gun. They felt very grown up.

After a couple of targets had holes, they decided to go exploring

They painted some birdhouses

Time for egg coloring!

Full ham dinner, thanks to Josh and Adrienne. Delicious!

Trevor must have climbed up and jumped out of this tree at least 8000 times.

That face

In the morning, the kids all hunted for eggs and then we all rolled home.

Sub-post #5: 04/22 – Earth Day party at the Dojo

Trevor’s Dojo threw a special party to celebrate Earth Day and invited “Radical Reptile Fun”. The owner, Mike, is a private collector and gives an excellent and informative show about all of his animals. And each child got to pet or hold every animal that he presented. He was well organized! Highly recommended!

Trevor was beyond excited. So was Brendan!

This snake is named Pancake. He is a Woma Python.

Leopard Gecko!

Snape, the corn snake

Bubba, the blue-tongued skink

Slithers, the Dumerils Boa

Smalls, a very juvenille Sulcata Tortoise. Give her 30 years, and she may weigh 100 pounds. They often live to be over 100 years old!

Hopal, the Albino Burmese Python is 14ft long and over 100lbs!

Trevor must speak Parseltongue 😀 😀

Brendan says she is so soft!

I loved the show, but now Trevor is begging for a pet snake or a pet tortoise. As much as I love them, we are enjoying pet-free mode for now. He says when he turns 6, he will get a pet snake. Of course, he also says he is getting a motorcycle for his 6th birthday.

Last week, I suffered an acute case of tonsilitis. Now it looks like it is Trevor’s turn. Last night, he got a low fever and his throat is super sore.
Brendan will not be able to get his surgery unless he is fever/antibiotic free for 6 weeks. So if he gets sick now, it will push the possible date out at least that far. So far, he is doing OK. Hopefully Trevor bounces back from this quickly.

After working on this post for a few hours over the span of a few days, I hope I will learn to get the posts done more frequently!

Year 6 – Week 21 – Day 5

Oh my, what happens when you get so behind?! 450 pictures to go through! We have been riding a roller coaster from the lows of colds, ear infections, and stuffy noses to highs of excellent adventures. We are trying to make the most of our beautiful weather before the summer grilling starts. I narrowed it down to just 93 pics and 2 videos. This should have been at least 10 different posts!

Sub-post #1:
We have a lifetime membership at the Odyssey Aquarium, and we are getting our money’s worth in the first year. We like to spend time there! There are sharks in the bathrooms!

Trevor like the large catfish

Stingrays are his favorite though

Touch pools – he is petting a sea slug

They will spend a lot of time playing with this water table.

There is a new over-sized lite-brite

They have some new Hawaiian stingrays that are really large. This is with the fish the boys call BFG. Like Big Friendly Giant, but instead it is Big Fat Grouper.

With a diver for scale

More sharks

When you come on Wednesday mornings, it is like having the place all to yourself. On the weekends, you can hardly get through this tunnel because of shoulder to shoulder people!

Sub-post #2:
Trevor is continuing to do his swimming lessons. Swimming is right near the big aquarium on Wednesdays, it works out great.

No hands on this boy, he is really swimming himself! He made it about half the width of the pool.

Then he waits for the rest of his classmates to make it.

Brendan keeps me company in the parent area. He looks forward to swimming some day.

The school treats Trevor to a free popcorn after the lesson. He orders an ICEE too because they always overfill it and it erupts like a volcano.

Sub-post #3:

One Saturday, I was feeling really sick so Bill and the boys took a trip to the mountains to meet some friends.

They took their Jeep.

There is so much funny about this picture

The boys each got to have a ride on a friend’s “real kid quad”

The destroyed a cardboard box with sticks in the wilderness. How much more fun can you have?

All the kids in camp took turns in the Jeep until they wore the battery out

Rocks in water!!! The best!

Sub-post #4:

The next day, we decided to take a drive up South Mountain. It is a nice place to go for views of the city

Sub-post #5:

Trevor continues to go to martial arts, but we have missed a lot due to illness and scheduling issues.

Brendan is almost done with his 12 week intensive feeding program. He has made some good progress and learned some skills, but he has a lot of practicing to do. We were able to eliminate one daily hour-stuck-to-the-feeding-pump from his day. It is a little extra freedom. I am glad to be done with the program for now, it was so much driving and extra time out of the day.
Trevor would spend the time in the lobby waiting for Brendan and making friends.

Now, Brendan is going to SCHOOL!! Three days a week for 2.5 hours, he is in a real classroom with about 14 other kids. So far he really likes it!

This past week, the boys were on Spring Break! We met one of Trevor’s school friends at LegoLand for the day on Wednesday.

The three boys had a blast for hours

Brendan likes all of the new Lego Batman Movie stuff that has been added.

We made a batwing in the free-build area

And raced it on the ramps

He was disappointed that we had to leave it there, so when we got home, we had to do it all again with our own Legos.

Sub-post #6:

It was time for the annual Chandler Ostrich Festival. Brendan had seen an ad for it months ago and was so excited! He love the show “Miles from Tomorrowland”. The boy, Miles, has a pet Robo-Ostrich named Merc that is one of Brendan’s all time favorite characters.

The Ostrich Festival had ostrich racing

Trevor made friends with an emu

The emu was very intrigued by something on Trevor’s shoes and it kept pecking them. The boys found this hilarious.

There was a petting zoo with tiny baby pigs.

A very hungry llama tried to steal the feeding shovels. The boys got to feed goats, llamas, pigs, and even a zebra.

We are waiting for pig races

I have a new phone that actually has a decent camera. The boys want to take selfies. We are silly in our hats, but it was already 90 degrees!!

And they are off! The winning pig gets an Oreo cookie

There was a cool STEM tent at the festival too. It was just nice to be in the shade.

Sub-post #7:

We didn’t get enough ostrich, so we had to make a trip down near Tuscon to the Rooster Cogburn Ostrich Ranch. This was such a fun place, I am not sure why we haven’t been before. It was a massive petting and feeding zoo.

They give you this 5-stage cup of chow and you head out to see all the animals. It starts with miniature donkeys. There was even a baby one.

There is a seed stick for the parakeets.

Then feeding the deer

The “Goat Penthouse” is hilarious. The boys sent the chow up the conveyor belts to dump in to their feeding cups.

This is actually a good way to keep the goats from crowding, pushing, and jumping on kids. It was also quite funny.

On to Brendan’s favorite. This ranch has a tremendous herd of ostriches. I am guessing easily in the hundreds that were visible.

We researched on youtube to find out what sound an ostrich makes. Brendan practiced. At the ostrich festival, he was making ostrich calls and they were actually coming over to him. I think here there were just too many of them!

Each one of these ostriches pecked Brendan right on the head. I think it kind of hurt, but he thought it was so hilarious, he was OK. Next time, we won’t get so close.

Feeding banana chips to bunnies

We saved some chow for the sheep

We each got a cup of nectar to feed the lorikeets.

They told us not to take the the lids off, the birds like to do it.

Birds on heads

Who knew that an ostrich ranch would have stingrays? Trevor’s favorite! These were captive bred and hand-fed from the time they were babies, so they were very friendly about being touched.

Trevor could have stayed all day right here.

We will go back for sure!

Brendan bought this t-shirt and he asks to wear it every day.

Sub-post #8:

LegoLand opened a new exhibit during spring break – all about space! We went on Thursday right when they opened. The line of people queued up at the door was insane and we almost turned around. But we were members and did not have to wait. A very awesome employee helped us go in through the exit and bypass all of the welcome movie and ride line that would hold up the crowds. We went straight for the new room and had it all to ourselves for at least 30 minutes! AWESOME!

There were so many free-build stations full of buckets of space themed Lego bricks.

Launch!

Many different models to admire

Control center

Mini master builders getting to work!

We watched some of the 4D movies.

Sub-post #9:

Thursday night, we were invited to watch Trevor’s karate instructor test for his brown belt. He had a lot of support. After two exhausting hours of demonstration and sparring, he got his belt. Congrats Mr. Nick!

Sub-post #10:

The whole family is mostly healthy. I am not sure with all of the orange trees blooming and grasses changing, we may be dealing with some allergies too. Other than Trevor’s quick ER trip, we have actually done well this winter. Zero admissions for Brendan!!

We want to wish a super happy sweet-16 birthday to Kayla!! (on the 16th) It’s your golden birthday too!

We wish to send healing thoughts to a good family friend, Marsha, who is having a difficult battle with a rare disease called aHUS. https://rarediseases.org/rare-diseases/atypical-hemolytic-uremic-syndrome It is a good time to ask everyone we know to donate blood and/or plasma whenever you can. Marsha has required numerous plasma exchanges to keep her alive. Plasma donations do take some time, but you can be compensated.
http://donatingplasma.org/donation/find-a-donor-center
Marsha is in our thoughts every day.

We are experiencing record breaking high temperatures this week, but we send well wishes to our families back east dealing with massive snowfall. Stay safe!

I will try to not let this go for a month again!!