April Blur

At Miss Jen's Birthday

The month started with so much promise. At the end of March, Toe was healthy. We had a great Cub Scout pack meeting where all of the boys built things with boxes (almost all of them opted to make Minecraft items). We went to our friend Jen's birthday party in Portland and stayed overnight. We had a great spring to look forward to.

Cubstruction - what would you make with a box?

We were out walking on a regular basis, enjoying the weather when it was nice.

We had a lovely Easter. A few days before,we went to my mother's and she and Toe made Easter Bunny cookies together.

Toe's class studied eggs in March. They learned about the different kinds of animals that lay eggs, the parts of an egg, they incubated chicks in the classroom. I brought Pysanky materials (Ukrainian decorated eggs) to show Toe's class how I make them. Toe and I spent all day Saturday before Easter making Pysanky with Miss Lori and Miss M. Toe made a dragon egg for his father that was really beautiful. Last year I had to monitor him every second when we did Pysanky. This year, he did the whole process safely on his own.

Easter morning, the egg hunt took us around inside the house and in the back yard. It was a beautiful morning. We had a relaxed day and Lori and Miss M came back for Easter dinner (made by Uncle Awesome). It was a great day.

And that's about the last I remember from April. Toe got a cough right before our quarterly Doernbecher visit but still managed to blow 116%on his PFTs. We started doing three breathing treatments a day to help keep Toe's mucus flowing while he fought whatever virus he had. Three breathing treatments a day with school makes very little time for anything else. It's a beautiful day, want to play in the back yard? Sorry, we have to do breathing treatment. Cub scouts? Sorry. Breathing treatment.

Toe was just starting to kick the cough and I had purchased tickets to go see the Harlem Dance Theater (probably the only time they'll ever play in our area) when the Saturday of the show, Toe came down with something else and I had to call the box office and beg them to resell our tickets.  By Tuesday, I had caught it too and it was terrible. Body aches, congestion, coughing, sore throat, fever, the works. After a week, we called the CF clinic and they put Toe on antibiotics (he had been doing three breathing treatments a day for three weeks by then). It has now been two weeks since I caught it and I am still not feeling better. I finally went to the doctor today and I, too, am on antibiotics.

Meanwhile, Uncle Awesome has been tending the yard (which has needed mowing at least twice), fed us, done grocery runs, and been there for just about everything. J managed to go to the CF Foundation Great Strides fundraising walk before he succumbed to this nasty virus as well. He has continued to work, support us as much as he can, and deal with the myriad of ideas that are coming to him for a creative project he has in the works (with a cold).

And now it's May. Not the beginning of May, but the middle of May and we're looking down the barrel at our last pack meeting of the year, June, and THE END OF FIRST GRADE. I'll be very sad about that. I adore Toe's teacher (he does too). It seems like yesterday we were facing the hospital and head lice.

Frankly, I've been feeling a little discouraged. It is difficult to find any kind of normalcy when you and your family are home sick. We have a routine that centers around Toe's feeding and breathing treatments, but there is not much room for anything else.The house is  pit. I have hardly had the energy to get up and shower, let alone tidy up, play with Toe, exercise, or leave the house. Poor Toe is desperate for someone to play with, and I have been lying on the couch, hoping to turn invisible. Excitement is a little beyond my reach right now. We've been doing this illness dance for such a  long time, it feels like we are going to be sick forever.

On the bright side, I have been able to read a lot of books. We also have really appreciated the bird feeder we purchased right before we became really ill. It has brought many small birds into the yard to keep us distracted. I have also really learned to appreciate my hearing and sense of smell (both of which I have lost for the greater part of two weeks).

Our back yard wisteria