Toby vs. the Yard

We are working to figure out ways that Toe can help in the yard without "gardening." I still need to talk to our nurse at OHSU, but I am pretty sure that the things we need to avoid are contact with soil (digging and weeding) and standing water (watering, water features). Ben said Toe could mow the lawn and pick cherries, apples, and some veggies (although I'd guess pulling carrots is out)..

So far we have tried mowing, pruning, and clipping. Toe love shears and was a *great* help cutting back one of our trees and then cutting the branches into pieces. Fortunately we have some unwanted bamboo in the back that will keep him busy for summers to come (bamboo is pretty invasive and keeps coming back, quickly). 

Toe and the saw

A different angle shows that Mom is a little cautious....

 The lawn is a triple challenge. Pushing a mower is difficult when you are four feet tall. Getting used to a mower with a cord is also trick. In addition, our lawn is sloped and very uneven. There are lots of pits to navigate and/or muscle through, made even more difficult by the angle at which you push the mower. However, Toe is game. We have a deal. He mows as much as he wants, and then I will  do the rest.

 This makes for much hilarity. I try not to laugh as he works, because he is so determined and wants this so badly. Sometimes we mow together, which means he holds down the button that keeps the mower on and I mow one-handed. Have I mentioned that my arms are getting quite a work out?

We will see how the spring develops....

CF Update

Doctor Toe asks his father, "How do you feel?"

Some visits to the CF clinic are easier than others. Sometimes we go and they take the necessary measurements, ask us how we are, take a throat culture, and send us home. Sometimes we go and discover that Toe is sick and we need to add yet another medicine or protocol to the treatment regime. Some fall somewhere in between - they are not necessarily bad visits, but some piece of information or part of the experience catches us off-guard and we leave the place feeling slightly nauseous.

Our March clinic (early March) was one of those in-between visits. Let me say first, Toe's sputum culture came back negative for Pseudomonas aeruginosa a week later and we are incredibly grateful we were able to get rid of it, even temporarily. But that was later. This was the clinic.

New protocols for bacteria cross-contamination among those with CF now mean that Toe will have to get a mask when he enters the building and leave it on everywhere except in the exam room. No biggie. They also have new recommendations for households. We will be told details later, but the big two were 1) NO hot tubs (which we knew) and 2) NO gardening. The second one came as a shock to us. Toe burst into tears when they told us.

Let me back up a minute to explain our situation: We live in a rural area in a small town. Until this year we have rented houses, but Toe's entire life we have planted tomatoes and peas in pots in the spring. It is incredibly important to us as a family to have outdoor experiences and we have always believed that starts with your own yard. Toe has regularly helped with weeding and been allowed to dig in the dirt in the big pots where we planted tomatoes in the off seasons. We have avoided standing water because of P. aeruginosa and we have known it grows in the dirt, but we believed that if it were a true problem, the doctors would let us know. We just bought a house and were planning on growing many vegetables together in the back yard... We're not huge gardeners, but we had big aspirations.

So, back to the clinic --- Ben (our nurse) says, ".... so no hot tubs, and no gardening." Toe bursts into tears. Ben looks shocked. Toe sobs, "I was just pulling ivy yesterday!!!!" (which is true). Ben turns to his intern and says, "I hate this sometimes, having to tell families things like this." Ben tries to assuage Toe by telling him he can do some yard work - he can mow the lawn, he can pick apples from the trees in our back yard. We get the kid calmed down. But the damage has been done. A huge chunk of our lives has just fallen away. I don't know how to explain this. In the scheme of things, this is little, but to us at the time, it felt catastrophic.

Toe's height/weight ratio is also down. He is still growing. Like a weed. A skinny weed. Too tall and not fat enough. He has genetics to thank for that.

The doctor also discovers "trace clubbing" on Toe's fingers. People with CF sometimes get clubbed fingers and toes, but we have not noticed anything with Toe. It is only a slight swelling around his cuticles, but noteworthy as it can indicate lung inflammation. The doctor had Toe get a chest X-ray (this happens once a year and it was time). Toe's X ray went smoothly and the results are that things are pretty similar to last year's X-ray. There is some mild airway thickening .

Overall, it was a fine visit. Toe's chronic cough has gone away. He was cheerful and even took the throat culture with no tears. But we left feeling unhappy... a strange discombobulation. My kid can't garden with me. His height/weight ratio is off again. He has beginning indications that CF is affecting his body... None of this should have been surprising; but I have been unable to write about it until now.... Yeah. That's all I really have to say about that.

Blah

I'm having a blah day. It is gray and drizzly outside. My house looks worse than the day we moved all of the boxes in. There are now half-unpacked boxes all over the house and every surface is covered with detritus. I have not unearthed my desk yet. It has become the chosen spot for placing emptied cardboard boxes. And there have been many. J keeps taking them away and I keep placing more there. I can't find my keys anywhere. The house needs vacuuming, the dishes need doing, the sinks and tub need cleaning,  I am fighting entropy at every step. It seems the more I clean, the worse it gets, the more I lose, the more frustrated I feel.

This time of year, I think the local weather and I are simpatico. Some days I'm sunny, others stormy... So I'm going to post some photos I took last month.

Taken Feb. 2 on 101 - ocean

Same day - further south - bay

One week later we had a snowstorm that halted our moving plans

End of Feb. (maybe March 1?)

The storms are hard to properly capture. There is a force behind them that is tremendous. We were pretty sheltered in our last house (5 blocks down the hill), but here at the top, it is pretty wild. I have not experienced winds this powerful blowing on my windows anywhere but at Mom's house right on the beach. We have so many trees on our property, it makes me nervous. But so far, they seem flexible, which is key in a storm. Flexibility. Hm. Better keep that in mind, B.

.....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

Short Sale

Keep your fingers crossed!

 We have been trying to buy this house since August. We might close sometime in 2014. There is nothing short about a short sale.

A short sale, for those of you who are not familiar, is a house sale where the owner purchased the house for much more than it is currently worth. For whatever reason, the owner chooses/is forced to sell the house and the bank where the loan was taken out allows the owner (now referred to as the seller) to sell the house at current market value, thereby taking a loss (coming up short), but avoiding foreclosure. This has become a more common type of sale since the housing market fell apart a few years ago. The process is more complicated and time consuming than a regular sale, but if you find a house you love and are willing to take the time and the risk, can be a good deal.

On a walk on my 40th birthday (in early July), my friend Nancy pointed out her old house (she lived there 15 years and multiple owners ago). She noted sadly that some of it had gone into disrepair and I commented on how big the yard was. We noticed the house was for sale. We continued on to the park so my five year old could play (a block away).

About two weeks later, J and I decided it was time to buy a house. Housing prices are as low as I think they will get in this area and it felt like the right time. We started house hunting with a realtor we have known for years and who has helped some of our friends find houses. After viewing a number of houses, we asked to see this one on a whim. Jason fell in love before we walked into the house. The lock box entry was in the back yard, a large space with a small orchard, an arbor, an open and a covered deck, and a small shed. Cherries were just going out and the apples were just coming in.

Back yard orchard is on left: apple, cherry, and crab apple

Back yard from corner of the house

The yard is a good size for us - enough nooks and crannies for Toe, a place for a table and chairs, but not too much....  It will need some serious work to get it together, but has a wonderful combination of wildness and landscaping.

Want to do some yard work? This was taken in AUGUST.

 The house itself is pretty wonderful. It is right in town, but is on a corner lot and close to a local park with a playground. Within walking distance of downtown. A large front room. Level floors (unusual in many older homes in Astoria). New, double paned windows (HUGE.), a new roof, a sauna in the basement.... The house is quirky and needs work, but has the potential to be a great house for us.

Front room. The entryway/mud room is off to the right.

Bedrooms are converted attic and raised roof. They are odd shapes and hard to photograph.

 And so we put in an offer. And we waited for the requisite 45 days for the seller's bank to decide whether they liked our offer. A counter offer and a counter-counter offer and negotiations later, we started the process of buying the house. That was in October. To say our mortgage processor is a stickler for details and a fan of red tape would be a gross understatement. We were given the approval to purchase the house on Friday.

The kitchen is small but recently renovated

Back room. Dining room to start. Attached to stairs leading up, a bathroom, the kitchen, stairs leading to the basement, a passage to the front room, and the back door. Needless to say, you are looking at the only wall space in the room. The room is essentially doors.

 And so, after months of waiting, not knowing whether to pack or not, we have a second closing date set for next Friday. Because we have known of short sales to fall apart at the very last minute, we did not want to start packing until we were sure that this thing was actually happening.

Main bathroom is off the "dining room" on the main level. There is a half bath upstairs. Needs a paint job. I like purple as much as the next person but....

 I'll believe it when I see it; but we are close enough that I am willing to share our excitement a little now. J is READY and is scheduling duct cleaners, the contractor to do some repairs that are beyond our abilities, and a few other things.

I think I'd better start packing now...