This post is only about Brendan’s sleep study. We got lucky because I think everyone in the family is fighting off another little head cold. Brendan kept it away long enough.

Here is the prep part. There are leads and wires everywhere!

They put the EEG leads on his scalp with this thick goo. I am so shocked he tolerated it.

The goo doesn’t actually stick so well, otherwise it would adhere to his hair. SO his whole head gets wrapped up to keep the leads in place. 12 total I believe.

Brendan’s best buddy right now is CJ7. (From the movie CJ7) CJ7 had to get leads and a head wrap too.

I was totally shocked that Brendan let her put on the CO2 sensor and tape it to his face. It had little prongs that went in to his nose.

He is checking out their looks. He said the CO2 sensor made him look like scuba batman

Good thing he was so tired! He did not cry even a tiny bit. He was a little comedian and entertained the technician. He asked her if the robot hospital bed had stabilizers and hydraulic actuators. She was surprised.

I have already heard back from the pulmonologist’s office. The sleep study results were all good. There were no apnea events, there was good saturation and respiratory rate. He hit all the stages of sleep. He had a sleep efficiency score of 87% which is not “excellent”, but totally normal. Given the conditions, I am happy with those results.

Now we wait for the next meeting with our aerodigestive team to determine the next steps.
Brendan really wanted the Paw Patrol Air Patroller as his reward, but Walmart was out of stock. He didn’t want to wait for Amazon to bring it so he picked the Lookout playset instead. He has played Paw Patrol all day.

CJ7 got a reward too. His antenna fell out a while back so today he got a new upgraded antenna sewed on. Brendan was happy. He went to bed at 6:45 tonight. He was so tired!

This post is just for sharing some fun pictures of our Wednesday adventure. On Wednesdays there is no school or therapy, and it is the perfect time to visit places when they are not busy! We just got a new annual pass to the Legoland Discovery Center that opened nearby. It is a combo pass with the aquarium that is in the same location, so we can do both.

There is a very large Lego city in the first part of the center.

It goes through a day/night cycle and has all kinds of noise and activities and buttons to push.

Trevor loves to build really tall towers with the giant rubber Lego pieces.

Brendan likes to sit and build in the Lego pools.

Brendan loves the movie “CJ7” so he wanted a Lego CJ7

Trevor found the Rubber Lego dispensary.

There is a ride that goes in circles and flies up in the air when you pedal. Adults are required to ride with kids under 48″. Brendan didn’t want to go so a nice employee rode with Trevor so he could ride.

Earthquake testing shake plates

Car building stations

Car testing ramps

Giant climbing structure

The boys know their way around SeaLife Aquarium

There is a smiley looking puffer fish in this tank that they always have to visit. They have named it “Puffer Buddy”

Trevor is letting cleaner shrimps crawl on his hand and clean him

Petting urchins

We have so much fun and work coming up this month and next, our calendar is jam-packed. Expect more posts!

Brendan started his feeding therapy program at the hospital. They are very organized and have a nice setup. Time will tell as to whether it is the type of help he needs. He has done a good job so far!

Sometimes we get great ideas from the internet. There have been a lot of duds but this one is a winner!
We made a “water blob” out of a heavy plastic drop cloth and a hot iron. It was hours of entertainment for the boys are their buddy Landon.

It basically was like putting a 6x9ft waterbed mattress in the yard, covering it with a sprinkler, and letting them go crazy!

After dinner they had to come back out and play more (in their underwear)

We are still focusing on finishing old projects. I have accomplished several long term tasks recently.

When I was pregnant with the boys, I ordered some custom hand died yarn from an old friend’s shop. She made a batch in the colorway named “Evil Alliance” from the sci-fi series Firefly. I intended to knit little onesies, hats, and booties to be the boys’ “coming home from the hospital” outfits.

Things didn’t quite go as planned. I did get a good portion of the outfits done, but not in time. The yarn went in a drawer for years. I recently ripped out all the old work and made them each a knit monkey instead. They have something to keep now, and I got to knit with the beautiful yarn.

I also have spent hours over the years working on the boys’ Beads of Courage. Trevor earned a number of beads from his NICU stay, but Brendan accumulated thousands. The program gives colored beads where each color signifies a different procedure or event. For example, yellow beads are for a night in the hospital. Pink beads means a day on the ventilator. Light green is for an xray, red is for blood transfusion, black is for IV pokes and shots. Orange is for PIC lines. Rainbow for therapies.
There is a special handmade glass bead given for courage or extraordinary events. Brendan has a lot of those.
It took four 16×20 shadow boxes to contain them all. I sewed them all on the backing.

It is good to start getting caught up!