Sunny Hike

The rain has come and today I am needing a little sunshine. I thought I'd share some photos from a sunny adventure we had last month. On an early-release day, Toe and I decided to hike on one of the Fort Clatsop trails. It was a perfect afternoon - warm, but not too hot - as we ambled along the river and through the forest.

There were many "fuzzy bear" caterpillars to stop and watch.

I love the light in the afternoons this time of year. The quality is different from any other time. It is a strong light, and warm, but it creates long shadows across everything. I was kicking myself that I didn't bring the better camera, but the light was so good, I was able to take some decent photos anyway.

Love

The Vest

"This makes my voice sound craaaaazy!"

We have recently had the opportunity to try The Vest, a tool used to percuss the lungs so mucus drains more easily through a person's system. We are in the process of applying for it through our health insurance. We have been told that research has shown that percussive therapy (whack-a-Toe), PEP, and The Vest are equally effective when done properly. However, after using the vest for about a week, I must say, I think this is pretty amazing. The Vest first inflates with air and then sends a series of vibrations through the air to create space between the lungs and the mucus in Toe's lungs. With the strong vibrations going through for a twenty minute stint, I can't imagine how the other treatments measure up.

Toe really likes using The Vest. He loves exploring his voice as the vibrations happen, so we are hearing a lot of singing and speaking (I figure that can't hurt his lungs either) during treatment. He has gained some independence during his breathing treatment by managing this part (and stopping every five minutes to do Huff "coughing" technique).

This has been an exciting development in our CF treatment regime. We are hoping we can keep it!

CF Update

Testing blood oxygen levels

We had a CF clinic visit early in September. They recently instigated the annual visit, a more thorough visit that provides education opportunities for families in addition to the regular check up. During our annual visit (we still will go to clinic every three months for regular check ups) we were provided an hour long session with a respiratory therapist to review how to use the PEP and to do huff coughing technique. We also were given extra information on nutrition, and walked through Toe's FEV 1 test (a breathing test that measures lung capacity) to explain what it meant.

The upshot is that all is going well. Toe's blood oxygen levels are great. His lungs are functioning well. Since Toe started an antihistamine as an appetite stimulant, his BMI has shot from the 39th percentile for his age group to the 68th percentile. They want his height/weight ratio to be above the 50th percentile for his age group because studies have shown that is the magic number for healthier lungs.... Toe has a tendency to grow up and then fill out, and each time he grows up, his BMI drops considerably and they become a little concerned. Right now to help keep Toe's weight up, he drinks half and half (as the main liquid in his diet), he eats high calorie, high fat foods, and he takes soluble fat powder. The appetite stimulant has helped him most of all.

We have been very fortunate with Toe's lungs this year. We work hard (through breathing treatments, germ avoidance, etc.) to keep the mucus moving through his system. Last winter Toe caught pseudomonas aruginosa in his lungs and had to undergo a full month of inhaled antibiotics. The bad bacteria was eradicated (temporarily) and Toe has had few exacerbations since then. We have been very, very lucky. We enter into the flu season with fingers crossed and hand sanitizer everywhere.

First week, First Grade

Now that we're a month in, I have the time to write about Toe's first week of school. I met with Toe's team: his first grade teacher, the school nurse, school counselor, and principal, to review and adjust his 504 plan. A 504 plan is similar to an IEP but is for health-related issues rather than developmental issues. We had a similar meeting last year and the staff worked through the year to help meet Toe's needs. We were very happy with the care Toe received. Last year's plan was well-constructed and so we made a few adjustments for full-day school and took the time to educate his teacher on cystic fibrosis. I left the meeting feeling excited for Toe's second year at this school.

The first day was just a short orientation - an opportunity for us all to see our children's classrooms, meet teachers, and review expectations. I love that they have this day that allows the children to enter the real first day with confidence and lets us as parents have a sense of what our child will be doing. We were immediately impressed by Toe's teacher.

First day - taking Gatorade and an air purifier to Toe's teacher.

And then the first day of school was upon us. We have to get up at 6:30 to get his breathing treatment done and breakfast and get him to school by 8:20. J and I have been in rehearsals for a show at a local theater and have been having late nights, so this was a shock for all of us. We got him to school on time (we've only been tardy once, thank goodness) and then J and I took a walk along the river. That has been our routine every day since: drop the kid off, walk on the river, return home for J to work on fulfillment for Scott's wallets.

Toe's report after his first day of school was pretty predictable: excitement at having three recesses. He did say, though, "We played a lot today. In fact, I think we played more than we did work!" Knowing this teacher, the play was educational. I love that the kids are getting an education where they are allowed to explore through play.

Soon after, I started volunteering in Toe's classroom and I am loving the things I see. His teacher takes each student at his/her own level and knows just how to push them. She has a relaxed classroom atmosphere and she approaches things with a positive attitude and positive reinforcement for the kids The students are expected to have responsibility for their actions, but are helped as needed and are given time to play and explore. And Toe loves his teacher.

During the first week of school, Scott looked at our rehearsal schedule and Toe's school schedule and decided it was time to intervene. He took large portions of childcare during our evening rehearsals so that Toe could maintain a regular schedule, eating, doing breathing treatment, and getting to be at a reasonable hour. During the day, Scott kept the laundry and dishes going so that Jason and I could work and rest as needed. It was amazing. Even with Scott's help, Toe was still really tired.

So tired he slept through morning breathing treatment

It seems we have caught just about every bug coming down the pike. Toe has missed almost as many days of school as he has gone - there was the high-fever bug, the stomach bug, the head cold... He just recovered from the head cold and this morning he woke up with an ear/jaw ache. I foresee that this year is going to be all about building up immunity. I just hope he gets well enough soon that we can get him his flu shot. I am grateful that he has not caught anything respiratory lately (knock on wood). So far, the lungs have been good.

Part of a team

I stopped by the house the other day and Mom and Ron were out mending the side steps. The atmosphere was relaxed as they measured, prepared screws, and fit things in place. They talked to each other about what they were doing and used gentle voices. This is not something Mom takes for granted, having been in circumstances that were not always this way. My dad was a little random during projects - sometimes he was patient and efficient, and sometimes he became cranky and gruff quickly. And then for so many years, Mom had to do things on her own. She is an incredibly independent woman who spends much of her time taking care of others.

And then Ron came along and changed everything. Mom still takes care of everyone else, but she has a partner who helps take care of her. They have made a life together that allows for their independence and for their teamwork. I have never seen Mom happier. Ron is amazing - to all of us. And to tell the truth, seeing this couple working on a project together so peaceably is something that I will never take for granted either. Mom deserves someone who is kind and gentle and respectful and who views projects as opportunities to partner...

A Lesson on Challenges

After school yesterday, Toe and I went to the playground. After showing me various parts of the play structures, Toe began climbing a little. He kept getting nervous when he reached about five feet off the ground. I offered to "spot" him, and he accepted.

For the next thirty minutes, I was absolutely baffled by our experience. I encouraged Toe to push himself, talking him through foot and hand placement, and standing underneath him just in case. Toe was so scared, his whole body was shaking. I offered multiple times for him to stop, but he said he wanted to push himself. Pretty soon he started crying. He stood there and shook as the tears ran down his face. I tried to help him down but he told me that NO, he wanted to do it. When he made it through once, he turned around and tried it again, still shaking. When he became comfortable with something, he moved on to something else that scared him. More shaking and tears ensued.

After thirty minutes, Toe was ready to stop, having tried at least three new climbing areas and pushing himself each time. If it had been me, I would have been exhausted from the emotional output.

I was really proud of him for challenging himself. Toe often tends to take the easiest route and not push himself. More importantly, HE was proud of himself. He had set challenges and pushed well past his comfort zone. I think it was important for both of us to have an experience where I was supporting him but not pushing, and where he was pushing himself. Hard to watch as a mother;  well worth the effort on his part.

Toe's comment on the whole thing? "It's so much easier going up than coming down!"