June 2018 – Family Highlights

 

This month we got enjoy some family coming our way. Cousins Bryan and SueEllyn from FL stopped by for an afternoon. Those two were on one of their cross country trips with nowhere to go and no plans set in stone. Just how they like it. What we got was a chance to see them and for the boys to have some fun with new visitors. The biggest attraction was the new truck they brought over and parked out in front of the house. Not only was it big, under its camper shell in the back were lots of goodies for the boys to investigate. They had fun climbing up in the back and poking their heads out the side windows and tailgate opening. At one point, they each got a cordless drill to fire off, with SueEllyn and Brian looking on with smiles, seeing how happy these gadgets made the kids. Later, the boys had fun playing with SueEllyn, using walkie-talkies and pretending to be lost on some kind of crazy adventure in the living room.

 

We also had some nice but short visits from Uncle Brandyn and Aunt Ginny this month. It had been awhile since last seeing them, but they were now moving back from Sacramento back to downtown LA. This means we’ll get to see them more! They stopped by on their way moving down and spent the night. They came back a week later on Father’s Day to celebrate the holiday and Uncle Brandyn’s birthday. Evan really wanted to see WyWy especially. Calan seemed to like hanging out with the grown-ups as we sat and talked.

 

We took a family trip to Long Beach to visit Dr. R and the allergy treatment facility. It was quite a day, since both boys had an appointment. It had been awhile for Calan, so he needed to be checked. It was a little rough at first for Calan, as they had to do the skin test, which was a bit uncomfortable him. But everyone just took their time, and he got through it. He’s now moving on to 60 peanuts and is off of daily SLIT treatments finally!

 

Evan’s appointment came with big anticipation: Eating his first wheat bread ever for his food challenge. He officially needed to eat two pieces of toast. He was so happy and excited about doing it. It started off well, as he chewed the toast, gleaming with happiness. Then, within the hour, it all changed for the poor guy. His nose started to run and then closed up. He expressed this as, “I can’t smell!”. What was really hard for him and everyone involved, including Dr. R was how he reacted emotionally to this. Of course it was uncomfortable. He was having a sever reaction. But on this day with the special food challenge, his emotional reaction was actually much greater. In his own way, he panicked. It wasn’t just crying about not feeling well, it was the dramatic resistance to trying things to help him. He did not want to use the nebulizer to open up his airways. He also refused some liquid oral meds that would’ve helped calm down his body’s system. Dr. R was there, and resigned to just standing in the corner shaking his head once he knew Evan didn’t want to accept the help. Dr. R went from trying to help him as he normally would to just telling Evan quite firmly that they’d have to epi him if he wouldn’t take the medication. Dr. R basically wasn’t too happy with Evan not calming down. It was hard to watch the whole scene as parents, to say the least. In the end, Evan eventually took the medicine with the help of some Starburst bribes. His body calmed down, and so did he. Dr. R said it was hard to gauge the exact reaction Evan was having to wheat, but he shouldn’t have reacted this badly to the challenge. We later realized that the wheat germ dosing we’d done leading up to this challenge may be the culprit to the bad reaction. We were told previously that toasting our own wheat germ was ok, when it fact it’s not good, because toasters at home toast unevenly. This apparently doesn’t give him what he needs. So, a bit of a set back in the treatment plan. Going forward, we’re to focus on wheat treatment and reduce what we’ve been doing on the nuts and other grains. We’ll start dosing with wheat flour now.

 

For the 4th year in a row, Calan resumed summer swimming lessons with Coach Lynne. Like last year, the first four weeks were held at another host’s house in Camarillo. As usual, Calan didn’t do a whole lot of swimming during the winter and spring seasons. He usually kicks the dust off pretty quickly though in part, due to Lynne’s great teaching. This year was a little different as Calan had a little left over anxiety from what he experienced in the spring basketball season. For him, the “mucus” was back as he felt a little apprehensive swimming in the pool for his lessons, despite it being a scene he’s very familiar with. It was a little tough that first week, but Lynne really took charge to help him get back to doing what he’s completely capable of. Mama had to step away from the pool for some of the time, but we did what we had to do. Lynne used a little tough love and also put Calan in a leadership role, helping to influence the other kids in his group who weren’t as experienced.

 

One cute and special activity Calan did with Evan this month was play chess. Together, the two of them would find a place somewhere in the house, then sit and play chess for 30 minutes or more. Calan the instructor, and Evan the patient learner. Who woulda thought…

 

Calan decided his pen name for when he’s an author would be: “Alexander Papallo”. He’s gotten good at making up names, and we’ve been hearing this one fairly often as of late.

 

This month, Calan started seeing Cameron, a family therapist to try and help him work through the anxiety that showed up this past spring. This is namely the mucus/gag reflex issues and basketball. This month was about Cameron getting to know Calan and sharing some initial observations with us. As Calan started doing better with his swimming lessons and basketball practices with the new season just starting, Cameron offered one good approach for us. That is to help Calan find what is “enough” in terms of a scary or new situation. Cameron identified that Calan is extra anxious about new situations in particular. SO, before he enters into these situations we can help him define well in advance what he’s going to be able to tolerate openly and honestly. This will help him (and us) have the correct expectations and set the bar for his comfort level. It relieves the pressure of him feeling like he has to do the maximum of what might be required. It seems like a great plan given the experiences of the last couple of months! Another idea Cameron suggested was for Mama and Dada to role model making mistakes and acknowledging them naturally. If we can express that an error on our part is “ok”, that we can fix it and not make a big deal out of messing up, it can help Calan do the same. The goal being for him not to be so hard on himself if he falls short somewhere and can’t do something as planned or desired.

 

It goes without saying, the biggest event this month was celebrating Evan’s 4th birthday. Gran and Grandpa were still in town, so it was made all the more special. Evan had a fun day, although we all had to get up a bit early in anticipation of a planned power outage. It was ok as it gave us a chance to head out to an early breakfast together at the Waypoint Cafe. We sat outside and watched as Evan became talkative and smitten with the waitress. He also admired other little girls he met afterwards when the boys ran around in the area between the restaurant and the airport tarmac. As usual at the “airport cafe” we all  ate well, filling up on delicious eggs, sausages, biscuits, French Toast, Pancakes and fruit. It was an overcast day with a heavy marine layer, so a good temperature to hang out afterwards by the tarmac watching planes and helicopters land. Afterwards, we all kind of split up for the middle part of the day. Dada to the library for a little work, while Grandpa worked then joined Gran for some errands. Evan had what he called a “broken leg” for some time so he relaxed and rested at home with Mama and Calan.

 

For the second half of the day, Evan had his party at Camarillo Grove Park by the Grade just a few minutes from home. We met up with Erica Rodriguez and kids along with Marina and her boys. The kids had fun running around with their party favors (kazoos and of course, a variety of snacks). Evan especially had fun and stayed in good spirits throughout, soaking up all the attention and enjoying it being his birthday party. It was nice to see him having fun. It was a peaceful setting at the park with no one else around and an easy set up with tranquil surroundings. We even got all the kids to pose (mostly) at the end for pictures. We got home about a quarter to 6 to a quiet house as the power was still out. The kids played with Evan’s new walkie-talkies. We managed to get the power back just before their bedtime.

 

 

 

The tadpoles that Mama and the boys captured last month have been taking their time turning into frogs. Evan finally spotted one though, and he named it “Freddie”.