Saturday

Liam decided he was momentarily tired of pushing the pusher today and wanted to ride, so Will pushed him around the house. (Note, matching outfits; I'm not sure how that happened.) Afterwards, Liam tried to push Will but that didn't go as well. Then, off to the playground to watch Mollie chase the ball and play on the play equipment until the rain started. Hope you all have a great weekend!

Evening walk

Will took Liam and Mollie for a walk after Liam's dinner last night so I could get some more work done. I tried to get a picture of how excited Mollie and Liam are when they realize Will is going to take them for a walk. Liam starts to yelp and bang on the storm door and bounce around. Mollie races around the yard and up and down the front walk and stairs. It's all Will can do to get the two of them quieted down enough to go in the carrier (Liam) and onto the leash (Mollie). And then, off they go to the park.

We love to brush our teeth. . .

Liam's favorite part of his bedtime routine is the tooth brushing part. He loves it. I don't know if the brushing feels good on his poor teething gums, or if he really likes the toothpaste, or what but tooth brushing was an immediate hit when introduced and remains a favorite. Our routine is first Mommy or Daddy's turn to do the brushing and then Liam's turn. We know when Liam is done with his turn because he throws the toothbrush on the floor.

PS - Yes, that is part of a chimney in our bathroom. For some reason, it is not enclosed in that room only. The whole chimney is slated to come down to give us much needed room (and less mess) in the bathroom and kitchen --- the house doesn't have a working fireplace any more and the top was already taken down because, among other reasons, it was cracked from the 2002 or whenever it was big earthquake that happened around here.

Walking!

Liam is really starting to walk now -- he walked through the kitchen on Sunday night and down the long hall at grandpa DH and GG's today. Photos to follow soon, hopefully tomorrow. We're so excited -- and a little apprehensive. Walking! He'll be into everything!

Update of Substance

We are all fine here and enjoying a week or two or however many we get of what feels like normalcy. Will continues to feel pretty good, both lung-wise and psyche-wise, so that's great. He didn't get out to row today; went on the erg a little, but hated it, so hopefully he'll get outside tomorrow. He is pre-occupied with organizing all the music in the house onto his computer and my ipod (this was meant to be a birthday present to me last December). So, that's nice, but, you know how easy it is to get obsessed with a computer-enabled organization project and it's not always the best thing to spend all day doing.

Liam is great, enjoying his new haircut (I think, he doesn't say) and working on his walking. He walked a bunch Sunday night, including walking holding my hand, which normally he is not interested in. He didn't walk so much today. We continue to encourage stacking of blocks, pointing at pictures (where is the bunny? e.g.) and baby sign. He is blessedly sleeping right now and has been for about 2 hours, a good 30 minutes past his usual wake-up #1. So, that's super and I hope the beginning of a trend.

I have a long day at work tomorrow (meetings to the north, which means time in traffic) and a busy week but hope to get a lot done and not have to work too much this weekend. That's it.

Here's a picture of Liam with his other pusher, the one that lives at Will's parents' house, and one of him unpacking the (just put away) toys in the toy cupboard. Thanks grandpa DH and GG for dinner tonight, it was great!

Walk in the Rain

While I was finishing cooking dinner, Will took Liam and Mollie for a walk in the rain. It was pretty wet but they didn't mind. When they got back, Liam showed me the pictures of rain in his Gossie the Gosling book. Over and over he wanted to look at the pictures of the rain; as if there weren't enough falling, continuously, from the sky right out the window! Hope you all had a good and restful weekend.

First Haircut!

The day finally arrived today: first haircut. It was a DIY job. Will did the cutting, I did the tearing up. Liam was fine with the whole thing except he refused to keep the towel around him. Will only cut the very front, not the sides or back, leaving him with -- what is this haircut called? -- a mullet? A Prince Valiant? Anyway, it's fine and it gets the hair out of his eyes. Maybe we'll take him somewhere to get it cleaned up or maybe we'll just wait for it to grow and be brave and cut the sides and the back next time too.

Breakfast with Daddy

Liam and Will in matching orange shirts eating matching breakfasts (well, lunch for Liam) of milk, omelet and toast with almond butter. Liam is beside himself happy to eat with his daddy.

Not Sleeping

This is a photo from earlier in the week; one of Liam's extreme "not sleeping" nights. (As opposed to his regular, every night, not sleeping.) This was taken at about 9:30 after hours of rocking and fidgeting; while I take a little break to keep from sobbing. While I try to calm down, Liam looks at his "soother" which is supposed to help him sleep with rainforest inspired music, bluish lights, and swinging frogs and monkeys. Really, it's something, check it out. Needless to say it does nothing to improve Liam's sleep. We've got to figure something out, I was interrupted in typing this by Liam's 90-minute wake up call. More rocking, more singing, and (thank God) back in the crib for I hope at least another 90 minutes. He's reliably up at 6 AM every day, pretty much, no exceptions. We just need to get the bedtime part worked out!

Trip to the Park

Will, Liam, Mollie and I went to the park this afternoon. I left work a little early; Will made sure to get his row in early(ish), and off we went to a little bit of nearby woods. We usually take Liam and Mollie to a different park, one on the salt water, but this is a nice deep wood with a little stream that will be filled with returning salmon in a few months. (We leave Mollie at home when the fish are around.) No very good pictures of the park, but this gives you some idea. We're still thinking about Liam's first haircut. And, a picture of what I see every morning (although usually minus Will and Mollie); I spend a huge amount of time looking in the car mirror checking on Liam while I drive him to whichever grandparent he is spending the day with while I'm at work. Liam loves the flag and tries to grab it every time I put him in the car or take him out. Note Will still would rather sit with Liam than with me. Figures!

Baby Sign

Liam still isn't even close to talking, so we've stepped up our efforts to help him learn baby sign language. Baby sign is neat -- it's basically American Sign Language with some "conceptual" signs tossed in for good measure. There's a great on-line video dictionary here. Liam signs: "milk," "eat," "more," and "baby." He loves the sign for baby most and makes it at every opportunity (pictures in his books, pictures of Will and me when we were babies that I've hung up in Liam's room, the picture of the baby on the baby food jar. . .and on and on. Babies are everywhere, apparently.) Liam has become addicted to his "learn baby sign language" DVD, which is the only TV he has been allowed to watch so far. He likes the puppets. A lot. It might be helping him with the sign language, but if it is, the progress is very slow. Here he is enjoying an early morning viewing. How boring is that: pictures of someone else's kid watching TV.

Cozy

There has been about a 30 degree drop in temperature here and the forecast is dark and very rainy for at least the next 24 hours. I don't mind it. Tonight Liam is snugged up in his footed, fleece PJs, sound asleep after only about 10 minutes of rocking. Will is making something for dinner, and I have a few minutes to catch up on some work emailing and plan tomorrow's day. A real luxury. Coming downstairs from putting Liam to bed I was reminded how grateful I am for our wonderful, cozy house and how much help we received from our parents and my sister getting moved in and getting it fixed up. Thank you. I can't thank you enough. We've been here just over a year now -- and I still feel so lucky.

The pusher

Liam loves the "pusher," his baby walker or whatever it is called. His latest thing is to run, run, run with it. He fills it with different things pretty deliberately. Today's haul was: white stuffed dogie, knitted kitty, assorted toy cars, sippy cup, slipper, a block and a book about cars. My one complaint: it's heavy, if he runs over your foot you really know it.

Knitted kitty goes for a ride

Will and Liam playing "make the knitted kitty go for a ride" shortly before Liam had a complete no-afternoon-nap-related meltdown and had to go to bed 30 minutes early. Note that Will thinks the knitted kitty should drive the plastic truck and Liam thinks he should ride in back. Go figure. In the good news department: I finally got to see one Olympic rowing race on TV today, men's 8s, Canada won. Thank you mom for the heads up, especially after I said earlier in the week "we don't need you to call us every time rowing is on TV." (We still don't, but today it was helpful.) I'm hopeful that I might get to see the women's 8s tonight, if they ever show anything besides beach volleyball. Honestly. More, and more important, good news: Will's PFTs are unchanged, maybe slightly up today which is great, going on 2 months since the last antibiotic therapy. Just the hypertonic saline and the airway clearance and, lately, the rowing. Let's hope this can go on for a long time!

Q: Why is the window all taped up in those pictures?

A: Because the glass, like the rest of the house, is over 100 years old and does not incorporate any safety features whatsoever and Liam will pound on it with his hands and with his toys no matter what we do to try to keep away. So, the tape is a little insurance policy that Will gave us: it won't prevent breakage but it hopefully will prevent serious lacerations if breakage were to occur. Now my job is to get my act together and finally order the window guards like I've been promising to do, which means I have to measure the windows. . .. This is an example of the type of thing I just did not understand before I had a child. I would have thought: what do you mean he pounds on the window, just don't let him, teach him not to, etc. Right.

How to Have a Nice Saturday if You're 14 Months Old - PM

First, do a little reading. "Dog" and "Potty," very interesting. Dr. Seuss, even better.

Tell Mommy all about what you were reading. All about it. All of it. Whatever you do, do not let Mommy eat her dinner or try to find rowing coverage on the Olympics.

Tire of Mommy and push the pusher all over the house.

Tire of the pusher and talk with Daddy about reading some of the grown-up books. (Note, both feet off the floor.) Start with the Materials Handbook.

Finally, get really tired and explain in no uncertain terms that it is too hot, too late, time for bath and time for bed. The end. I hope you all experience some joy this weekend.

How to Have a Nice Saturday if You're 14 Months Old - AM

First, get up really early and talk Mommy into taking you outside so you can unpack Mollie's box of stuff, climb up and down the front steps, and throw things for Mollie.

Second, come inside, get dressed (for the first time), eat breakfast, and dance around with Daddy until you are both tired.

Third, get dressed for the second time after an unfortunate incident with snack. Refuse to nap, but lie around in the hall and look at the ceiling. That's the morning.

Make a Silver Lining

There has been a lot of traffic on the Internet over the last few days about the Friends of Pepe blog. I had followed the blog, referred to it by CF Husband, and posted about Gina/Pepe a few days ago. Although the exact details are not, and likely never will be, clear the gist of it is: it looks like the blog was a fake. It was the work of one (my theory) or more people who are very, very sick (in the head if not in the body). This has caused anger, sadness, outrage and embarrassment; and hurt a lot of people.

Here's how I choose to reflect on it: the reason the story was compelling, I think, is that CF is a real disease and it's fatal. There is no cure. People with CF will die from it, and they will die prematurely. A transplant is not a cure -- it buys time. It is a very, very difficult operation with a range of outcomes (from death to 8-10-? years of additional life). If you get a transplant, you still will die from your CF (or from transplant-related complications) and you will die prematurely. Yes, the story apparently was exaggerated -- but this doesn't change the fact that REAL PEOPLE have CF and they will go through treatments like those described (if they are lucky enough to have good health care) and eventually unless they are taken by some other event, most will get sick, and sicker, and die. This will happen until there is a cure.

If you know and love someone with CF, you have faced this and you have sat in hospital rooms listening to them breath and praying for help, relief, anything. If you know someone with a transplant your joy in this life-saving gift is colored by helping them through what can be a very difficult recovery (it is an incredibly painful operation) and post-transplant complications. I have sat at Will's hospital bed through more than one night counting his breaths per minute -- hoping that the doctors have figured out the right mix of pain medication and antibiotics, calling the nurse when the breathing rate drops below 15 or so, and watching them stage the intubation equipment. I have been told, more than once, to call the family "this is an acute process" (which is hospital code for: your loved one is at real risk of dying, tonight).

FOP had around 275,000 or 300,000 hits. Let's say that is something like 20,000 unique visitors (or more). I respectfully suggest that each of those people take some of their energy about this issue and send $5 to the CF Foundation. If 20,000 people send $5 each, we raise $100,000. That's a lot of money that can be used to search for effective treatments and a cure for all the REAL Ginas/Pepes and Pauls.

I do collaborative process work for a living. In my field, we tell clients to "keep the main thing the main thing." So, let's all focus on the main thing here: this is a real disease, it's heartbreaking and it's fatal. If you're touched by it, if you were touched by Gina/Pepe/Paul's (fake) blog and feel hurt or angry or betrayed or annoyed: turn it to the good. Work for a cure. Rather than visit the various de-bunking sites and stress about this, take that that time and energy and dig through your couch cushions and the pockets of your winter coat and scrape together $5 to give to CFF. Then, go to the CFF donation page and make a $5 donation in honor of all the real Pepes out there. I did.

If you're interested: in the "type of donation" box check: "in honor/memoriam of." When you are prompted to enter the name of the person you are honoring and the name of the family to notify, I typed "pepe" in all 4 fields and it worked fine. Thank you.

Birthday!

Happy Birthday Will, who turned 40 earlier this week. What a thing! It was actually a more cheerful occasion than this solemn-looking picture makes it seem. It was a little hectic; even with buying the dinner (BBQ), after a full work day it still seemed like a lot to come together. And a lot of people in a small house. But -- I think Will enjoyed it and the fennel cake (One of Will's favorite foods! In a cake!) which I was concerned about, came out fine. Best ever, Will has been feeling well enough to row almost every day this week -- an activity that is great for his lungs, his overall health, and his mind. So, all in all, a good week so far. I'll try to catch up more and post some photos of Liam this weekend. We're thinking it may be time for his first haircut. (Gasp!)

Camera still MIA

This is officially a vacation day for me and I didn't feel like going into to the office just to get my camera so this afternoon I spent a few minutes sorting through older photos. It is hard to believe that in the space of a year Liam has gone from this:

To this:

Here are a few more favorite older photos. Listening reggae music with Daddy, fruit bat for Halloween with Grandpa DM, and noticing toys for the first time. I'll pick up my camera tomorrow and send pictures of the net-swing chair Will put up on the porch. It's something. Hard to remember that this time last year Will had been in and out of the hospital and the ICU at least 3 times in the space of 8 weeks or so and was on home IV antibiotics and powerful anti-fungal and anti-viral medications. We're so happy to have these days to enjoy!

A request

I respectfully ask that if you pray, or however you express your intentions, you turn your thoughts to Pepe (Gina) and her friends and family. Gina is struggling to survive post-transplant complications. You can read her story here. I left my camera at work yesterday, but will try to post an update on our (blessedly) uneventful day later tonight or tomorrow.

Baseball!

My company takes everyone to a baseball game once a year, so Will and Liam and I stopped by last night. Liam was good with all the new people and with the crowd, very smiley and happy to be the center of attention. He wasn't much interested in watching the game, which is strange because he so likes to throw things. He slept in the car both going to and going home -- so that was perfect. I was happy Will decided to come with us, often he's not wild about crowds and lots of people (not to mention public food) because of his immune suppression, but so far so good, no fever or anything this morning so all the hand washing must have worked! Don't forget, Will turns 40 next week. He'd probably love to hear from you on this remarkable and unexpected birthday!

Will is Turning 40!

It's Will's 40th birthday next week, and he will be 7 years post-transplant (his "re-birth day") in early September. Who ever thought! Here are some statistics to consider:

• About 30,000 people in the US have CF. It is the most common fatal genetic disorder.
• About 10 MILLION people are carriers of the CF gene. Two carriers = a 25% chance that the baby will have CF. It's a simple blood test to find out if you're a carrier. I had one.
• The average life expectancy for someone with CF is increasing as babies are diagnosed earlier because of mandatory screening in many states, access to medical care expands and new treatments are developed; but it is still only about 37 years. Many die sooner. Some live longer.
• In 2007, about 1,470 people in the US received a lung transplant. About 275 people died waiting for a transplant. At the end of 2007, 2,236 people were still waiting. About 15% of those people were listed because of end-stage CF. About 55% of people who receive transplants survive 5 years or more. (More transplant statistics here.)

We feel blessed and lucky to be celebrating this birthday -- that's for sure. This also is the time of year that I write the family of Will's donor. Because of the mandatory separation between organ donors and recipients, we don't know who they are or if they ever get my letters, but we are profoundly grateful to them and I include them in my intentions every day. I have no idea how we're going to celebrate Will's birthday, but hope to come up with something good.

Sleeping

Finally sleeping. By now, everyone is ready to go to sleep. Emma, my parents' small white dog is visiting us for a few days. She and Will are relaxing now that Liam is finally in bed. Don't worry mom, she ate her pill and her food and she's doing fine.