Year 6 – Week 17 – Day 6

This is a February potpourri, some pictures of a little of everything. We have been battling a never ending train of illnesses and it is getting really old. First Trevor had croup, then Brendan got croup with ear infections and missed a whole week of feeding therapy. Then Trevor ended up at the hospital in the middle of the night with a croup attack again. He missed his belt test and the Valentines party at his dojo. Bill and I had to cancel the date night we had arranged for the first time in easily over a year and a half. He missed a friend’s really cool birthday party. Just when Trevor was feeling better, he got pinkeye and missed his Valentine party at school and a swimming lesson. Then Brendan got a fever again and missed more feeding therapy. Then Bill and I both got the nastiest cold. Then Brendan and Bill got pinkeye.
Now I have pain in both my ears and can’t wait until tomorrow when I can see my doctor. It just doesn’t end!

On to the positiveness..

The boys enjoy their science and the weather was nice so they played outside. I give them a pile of baking soda and vinegar and they can be entertained for hours.

Trevor had worked so hard practicing his combo for his belt test. It went: Ridge Hand Strike, Vertical Punch, Roundhouse Kick, Double Outer Forearm Block! It is a lot for a kid to remember.

Yesterday, the 18th, Trevor was able to go to a belt test make up. There were only 6 kids testing so it was less intimidating. There were far less distractions! He did great!

After breaking a board with his side kick, he earned his upgraded Yellow belt. Yellow with a black strip – his Batman belt. 🙂

Cheese for the camera with his instructor Miss Charlie

This is “Show me your samurai face”.

We were just barely healthy enough to go to the private roller skating event with HopeKids. First time on skates!

Bill was looking forward to it as much as the boys

Brendan was a lot more stable than I expected. He did great!

The roller rink has these “walkers” for kids to use now to learn to skate.

Brendan has to use his headphones because the music was so loud

Trevor did well with the walker thing.

A few more older pics..

Trevor had a crazy hat day at school so I made him a hat that looks just like his favorite puffer fish stuffed animal.

A couple of pictures from last week’s ER trip

Brendan is done with his five day a week feeding therapy and is now in the transition phase where we are going two days a week for the next six weeks. He has made some progress, but it is a very difficult process. Now that he is not so busy, he is going to try something new and exciting. We are going to let him go to school! He will have the same teacher that has come to our house for two years, but he will be in a classroom with other special needs kids. He says he is excited. We just are doing all of the paperwork and medical training necessary. More on that in the next post!

Year 6 – Week 15 – Day 1

I have a bunch of photos to update for this super busy month.

We attended a fund raiser car show for HopeKids.

Food trucks and really expensive cars made for a nice afternoon out.

The boys were more interested in playing with the hotwheels they got at check-in.

There was a big variety of interesting vehicles

If we could afford a “mid-life crisis car”, this is what Bill would pick!

Enough chrome?

This car was actually a metallic ruby red color

We all loved the paint job on this one

These car owners are also some of HopeKids’ biggest donors, so we appreciated the event.

One day, the boys really wanted to “do some science” so we had to try the diet coke and mentos combination.

You have to put in a lot at once for the best reaction


We made it through two solid weeks of Intensive Feeding Therapy and Brendan was doing very well. He is making great progress, even if it is slow. Then Trevor picked up a nasty virus at school and had some bad croup attacks in the night for a few days. Once he was about over it, Brendan got it. He was scary sick for 10 days and is just now feeling better. He fought the virus but ended up with a sinus/double ear infection. He is still finishing his antibiotics and is still on oxygen. Now we are seeing if he can pick up where he left off in eating. He missed a whole week.

This week, we are being visited by Aunt Beth and Uncle Steve. They have escaped the IL cold to hang out in AZ (and play with electronics sets)

The boys are lounging on their uncle and trying to teach him how to play minecraft.

Beth and Trevor played pillow toss for at least an hour!

Today, Trevor had another tip test. He went through his stations demonstrating his techniques.

Trevor knows his moves pretty well, but in the super busy gym where they are testing so many kids, he freezes up. He has a hard time focusing.

He earned the tip on his belt, but he was told he needs to do a lot of practice before his belt test. He says he is serious about ninja school and he will practice really hard.

My brain is still feeling foggy after such a busy and stressful month. I hope February is kind to us.

Year 6 – Week 11 – Day 4

I had a couple of pictures in my phone from earlier this month. Trevor had a test and earned his red “tip” on his white-stripe yellow belt. He will need to earn the black tip before he will be eligible to test for his black-stripe yellow belt. He is making improvements in his coordination and strength. We are proud!

Brendan wanted me to take this picture of the ship we all made together at the LegoLand Discovery Center.

We squeaked in a trip to ZooLights right before it was about to end, and then found out it was extended another week. We are still glad to go. It is fun to see what they change every year.

Brendan saw the cardiologist on Wednesday. He had an EKG and an Echo and did such a great job. Not one tear, not even a frown! He was awesome. The doctor ordered Brendan’s heart cath procedure to be scheduled. It will be done sometime in the next few months. They will thread the catheter from his thigh in to his heart to take measurements of the pressure and circulation. They will also thread through his neck into the “Glenn Circuit” to measure the pressure in his pulmonary arteries and his lungs. This is crucial to preparing for his final heart surgery.
If his lungs are ready, the plan is to go forward with the surgery this summer.

Brendan starts the Intensive Feeding Program on Monday. We will be driving to the Children’s Hospital five days a week for 1-3hrs of therapy each day. That goes on for five weeks, then we transition to 2 times a week for three weeks and then once a week for two weeks. It will be a challenge.

Once he is done with Intensive Feeding, he should be starting to attend some preschool classes at the school instead of at home. Our calendar has never been so full. We managed to squeeze in another month of swimming for Trevor too. He loves it so much.

If you don’t hear from me much, I apologize. I haven’t been great at returning messages, I need to get caught up!