.....aaaaand the birthday.......

 My kid turned six. SIX. Every day he looks more like a big boy and less like my snugly toddler. Even though we are between two houses, we were able to celebrate in style. Slight disclaimer: this birthday was sponsored by Toe's grandparents. My mom and stepdad came and cleaned the house, provided party favors, and cut ice cream when we forgot the scoop. J's mom and stepdad decorated the living room and Toe's bedroom, put up the pinata, and provided child care the day before. (Meanwhile, J's brother and Uncle worked on the house and the yard).

J's parents, great uncle, and brother all came to help us celebrate (from Texas, Arizona, and Portland), and celebrate we did.

Grandpa Boat, Grandma Gus, Toe, and Uncle Awesome

I made pies:

My Gra'ma's apple pie (Toe's request)

Berry. Notice the lattice work? That reflects my current state of mind.

 We invited Toe's really good friend (whose mom is my friend) who comes over for playdates more than anyone else and Toe's best friend from Kindergarten.

Chairs? We don't need chairs!

This was the big hit. The kids didn't mind that it took forever to break. They were happy with 1-3 pieces each whack.

I needed a little energy from Ron afterwards.

 Right after the party, we packed up and drove to Portland, spent the night, and the next day we went with Grandma Gus, Grandpa Boat, and Great Uncle Mark to the Zoo.

Followed by:

 

By some strange coincidence, two of our friends from high school also have children born within 25 hours of Toe. He adores both of them. It seemed fitting to invite Mr. D. to celebrate with us. He and his dad joined us for an afternoon of fun.

The birthday boys, born 25 hours apart.

Thank you to everyone who helped make this happen, who celebrated with us, who sent Toe birthday wishes, and who creates a loving community for this boy.

Toe is already planning his seventh birthday. I am planning a nap.

... aaaaaannnnnddd the house.....

 No, we are not moved in yet. As with most old houses that you purchase that have been rentals for years and then shut down for six months, there was some work that needed to be done. And when I say some, I mean quite a bit. And we discovered more as we went. "Hey J, while I was taking tape down from painting the ceiling, I noticed the hood over the stove is sticky. I don't think there's a vent to the outside on that hood!" (the inspector missed that one).

So, there were the knowns: two toilets to fix, wall heaters to fix, some front porch steps needed replacing, heating vents that needed cleaning, yada yada. And, there were the discoveries: no kitchen vent, leaking valves and pipes, leaky windows on the porch....

We've been working on it, and had people helping us work on it, and we've had contractors working on it.... and we plan on moving in just over a week. And I'm sure we'll continue working on it forever. A friend of mine once said, "You're buying a house? Go dig a hole in the back yard and just start dumping money in it. It'll be cheaper."

The majority of the repairs were not visible, but we have made some fun changes, too. Lots of painting.

  

We also pulled out the carpet in the living room and had bamboo floors put in. That's the big one. I LOVE it.

Did I mention this house is smaller than the one we live in now?? So, I'm sure I'll be writing about garage sales soon after the move.

Pseudomonas aeruginosa: Bad, Scary, Ick, Boo

Pseudomonas (su-da-mohn-us) showed up in Toe's last CF clinic sputum (mucus in the throat) culture. Pseudomonas is bad. Scary bad. How scary? Only time will tell...

Pseudomonas aeruginosa is defined by the CF Foundation as a "bacteria that causes many lung problems in people with CF. It can be resistant to antibiotics. It can be spread between people with CF." Up to 80% of CF patients eventually become infected with Pa.

For the general public, Pa is generally known for causing "hot tub rash." It is the slimy film that exists on the walls of poorly cleaned hot tubs. I'd venture to guess it is also the pink slimy stuff that grows on the bottoms of shower curtains and in sinks that have not been cleaned regularly (not that I am personally familiar with either of those forms of slime). It's not a huge deal. But, if you have CF, cancer, or are immunosuppressed,  and it gets in your lungs, it gets complicated.

 Pa is spread through contact - with random objects, between people who have CF, on improperly cleaned respiratory equipment. It can live on objects for hours. It exists in nature, in sinks, on skin, on counter tops and tables.

Here's my understanding of how it works: Once you have caught Pa, it forms a slimy coating inside your lungs. The slimy coating holds in other bad bacteria. Pneumonia, for example, can get trapped under the layer of Pseudomonas and then be almost impossible to treat because the Pseudomonas is antibiotic resistant.  I think it also produces toxic proteins that can cause tissue damage. You hear sometimes about AIDS patients or the elderly dying of pneumonia? Yeah, sometimes that is caused by Pseudomonas.

I have sort of been under the impression that catching Pseudomonas is seen by parents of kids with CF as the beginning of a downward health spiral. Having said that, our clinic nurse, Ben, said that they do not see Pseudomonas as a huge game changer. The advantage (as compared to other bad bacteria) is that it can be managed with inhaled antibiotics, confusingly known as TOBI (short for Tobramyacin). Can you see the conversations? "I'm going to put Toby on TOBI." We've had them.

The Big Toe caught Pseudomonas when he was five months old and we were able to "eradicate" it with aggressive oral antibiotics and TOBI treatments for a month. At the time I thought "eradicate" meant "get rid of," but I now understand it to mean something more like cancer's  term "remission." Ben says that once a kiddo has caught Pa, it is only a matter of time before it comes back. It can be 5 years, can be 10. There is a 35-45% chance that we can re-eradicate the Pseudomonas. If we do, Toe will have taken TOBI for a month and we will go back to normal. If not, Toe will take TOBI twice a day for a month, every other month, for the rest of his life (another addition to the twice-daily breathing treatment routine that now runs 1-1.5 hours each time).

So, back to last month. Routine check up. Toe's had a sort of crazy dry cough since May, but we thought it was just a case of asthma (the kind with just a cough, no wheezing) and were treating it with FloVent. About a week later, we were notified that he had Pseudomonas. It was the same day we were called in to sign papers on the house. Signing for the house was not high on my priority list that day. We made it through and then had to wait for the antibiotics to arrive (special shipment - must be kept refrigerated). We are doing a month of TOBI and then we go back to the clinic for another sputum culture.

We know he could have caught it anywhere, but we are stuck wondering where he caught it. Did we do something wrong? Was it a fluke? Was it something that is a part of our routine? Was it the swimming lessons? Second and third and fourth guessing. And all we can try to do is tame the questions, push them back, and face RIGHT NOW.

So, right now, TOBI is added to the breathing treatments. Toe doesn't like it. Says it tastes awful. The whiffs I get are pretty nasty. But, we are glad the treatment exists. We'll keep you posted.

Sources: Cystic Fibrosis Foundation's website: cff.org
Pseudomonas Genome Database: http://www.pseudomonas.com/p_aerug.jsp