Busy, Busy, Busy

It's been a knock down, drag out week at work for me, but I hope to catch everyone up on all the news this weekend. In the meantime, all the crafty, designy, parenting-type blogs I tend to look at seem to have posted photos of strawberries lately, so I thought I'd post mine. We ate a huge number of strawberries over the past month and put even more in the freezer for winter. Will loves strawberries with Brown Cow whole milk yogurt. Liam loves strawberries any way he can get them. Of course, strawberry season officially ended here last Friday and we're (almost, any day now!) on to raspberries. Typical of my hectic life that I get my strawberry pictures up when the season is already over!

Will is still feeling crummy and is more and more congested, so he may be headed back to the hospital for more IV antibiotics in the weeks to come. Or, back to the colistin (which he hates). Or something. We are hoping he starts to feel better soon. Hoping, hoping, hoping.

Pseudomonas is No Fun

Pseudomonas aeruginosa according to the Pseudomonas Genome Database V2 is "a versatile Gram-negative bacterium that grows in soil, marshes, and coastal marine habitats, as well as on plant and animal tissues." In other words, it's everywhere. For most of us, it's not a problem. But for people with cystic fibrosis, or cancer, or who have a compromised immune system, it can be a big, ugly problem. Will's on and off pseudomonas infection pre-dates his transplant. For a while after transplant it seemed gone for good, but when Will got PTLD and then Hodgkin's lymphoma, and the various types of pneumonia that went along with being sick, his pseudomonas came back and seems like it might be here to stay for a while. Will's pulmonary doc says: people after transplant get what they had before transplant. I guess that has pretty much been true for Will. It has been making his mornings, especially, tough lately.

It may be that as Will gets farther out from the various lymphomas and pneumonias and his health stabilizes more and (we hope!) improves more, he'll be able to clear the pseudomonas as he was able to pre transplant. But, it will be harder this time because of the immune suppression drugs he needs to take to prevent rejection. In the meantime, he tries to keep it under control with daily airway clearance and periodic IV and inhaled antibiotics.

It appears that the pseudomonas makes a home in Will's sinuses and goes from there into his lungs. Sinus surgery has been discussed but the results seem uncertain, especially for someone with CF. If any of you CFers out there have experience with sinus surgery one way or the other, please let me know. Thanks.

PS - I took the pseudomonas photo from the wikipedia site, which says it is P. aeruginosa colonies on an agar plate.

The Dog is Delightful

Liam loves Mollie, the dog. He also loves Emma (Grandma K's dog). He loves his flip floppy stuffed dog. He just loves dogs period. The thing that makes him squeal with glee, just beside himself happy, is when Mollie rushes up to the storm door and he is on the other side. This is about as close to Mollie as he generally gets, since she thinks he is too unpredictable to be around and avoids him when they are together inside and confines her engagement to responding to ball throwing (usually with an assist from Will) when they're together outside. It is quite a sound that squealing with glee, I'll miss it when he's grown out of it.

Note Will's big water bottle. The lung transplant saved his life but it didn't cure his CF. (There's no cure -- yet!) So, he loses a lot of electrolytes when he sweats and he sweats more than most so he has to drink lots of water. (It's also important to help protect his kidneys from the damage that the immune suppression drugs want to cause them, not to mention the damage already done by chemotherapy drugs and all that CT contrast.) Lately he's been adding an electrolyte replacement mix to the water, something made for hikers, called Vitalyte (used to be called Gookinaid). He likes it -- says it's just slightly sweet and slightly salty, enough to make it better than plain water but not enough to be annoying or make you thirsty.

Our House

The mice got me thinking about our house. We love our house and are so very, very happy to have found it. Right before Liam was born, we were able to purchase one of the oldest houses in town, a 1904 (or 1902, depending on who you ask) smallish Victorian farm house called the McClellan house.

The McClellan house had fallen on some hard times (which was how we could afford it!) and needed quite a bit of work. So far we have:

• Put on a new roof on the house and garage
• Put up thin drywall over all the old cracked lath and plaster
• Painted everything except the kitchen and upstairs bathroom
• Insulated almost everything
• Installed a very fancy air filter to catch any old mold or lead tainted dust

Grandpa DM built new front steps, fixed up the basement so it doesn't fill with water anymore and has new windows that aren't broken and open and close and have screens (this makes a much better home for mice, apparently!) and he and Aunt C renovated the downstairs bathroom, replacing a tangle of twisted pipes formerly known as the 'shower in the kitchen' with white bead board and a new sink and a new cupboard. He also cleaned, painted and put back in all the trim around the baseboard so it looks nice. Grandpa DH fixed the old windows so they open and close like they once did, with the iron counterweights on new ropes, and he put in a great new front storm door that's all glass so that it lets in the light, but stops the wind better than the old door (it let light in too, but mostly around the edges). He also helped Will put on a new garage door so animals wouldn't think we cleaned all the years of junk out of the garage just to give them more space.

Our parents have done a lot of other work, too -- rain barrels so water drains away from the house and into garden areas, wiring and lighting, and lots of other things. And Will has been fixing up the garage on his own schedule -- that is, intermittently and at weird hours -- so it's a useful workshop for building and fixing things.

We are so very grateful for all the house help!

Mice!

It turns out that we have a mouse (or two or three) in the house. He/she/they ate part of a peach off the kitchen counter, part of a butternut squash, and tried to make a home in the broiler drawer of the oven (ICKY!). Will has taken on eviction of the mouse/mice -- so now we have traps everywhere, or at least everywhere in the basement. I'm conflicted about killing the mice instead of live trapping them and releasing them in a nearby greenbelt (my preference); however, after Will investigated the situation, it seems like we have more of a mouse problem than I realized and I can't find my very expensive "Sherman" live traps for mice leftover from when I was practicing to be a wildlife biologist (more on that some other time), so we're officially on mouse death watch. Wish us luck.

Graduation

From the kitchen sink to the "big boy" bath tub (actually, the only bath tub in the house, but, whatever). Tonight was the first try and went pretty okay, thanks to Grandpa DH and GiGi taking Liam to baby swim and making him so like playing in the water that even though he is very suspicious of bath time, he mostly goes along provided there are LOTS of toys. This is what it looks like after the bath is done and the baby is in bed. The washcloth with ric rack trim is actually the best baby bib ever, and multi-purpose to boot. Will's mother made Liam a bunch of these and I'll post on the instructions some time in the future. They're awesome.

Stairs

Liam is learning to go down the stairs (he's already mastered up). The trick apparently is to turn around at the very end of the hall and scoot on your stomach backwards all the way to the top of the stairs to make sure you're "feet first." He's curious and eagar to learn new things, but pretty thoughtful in how he goes about it. Happy 4th of July.

PS - the hall and entry color is a Benjamin Moore paint called "baby fern." It is easily my favorite color in the entire house; Liam's too.