Sunday, August 30, 2009

Follow-Up

I heard back from Dr. Lewin, Gabby's cardiologist, about my concerns regarding H1N1 flu & its effect on CHD kids. His answer was pretty short. He said:

It is reasonable to get the vaccine. Other than that no one knows if kids with CHD are really at higher risk. I’m not sure what else can be easily accomplished. I’ll keep you posted if I hear other ideas.

I wish that this was more illuminating, but this virus is so new, we really don't know how it will affect various patient populations. While it can be scary, especially if we have a child with other-than-normal health issues, it seems that the most prudent thing to do is get the vaccine and help our kids remember to wash their hands.


Saturday, August 29, 2009

Swine Flu

Ok, I haven't been to worried about H1N1 flu. Until now. Then I read this article from the Santa Rosa Press Democrat: http://www.pressdemocrat.com/article/20090828/ARTICLES/908289916/1350?Title=El-Molino-student-14-dies-from-swine-flu

This teen had been healthy, active, and involved in sports. Only thing his, he had open heart surgery at 2 days old. but he'd been "healthy" ever since according to the article. Sounds like he died pretty quickly from complications. So, all you parents whose kids have had OHS, we really do need to be vigilant against this bug.

Now I am worried. More so than I was before.

Tuesday, August 25, 2009

Vacation!

This month, I took my courage in hand and put me and my girls in my Toyota Corolla for a 10 day car trip. We saw a lot of people and visited a lot of places. We had a good time, and we all survived.

Our first stop was Portland where we saw our friends, Catie & Brent, who moved to Canada on the day we returned. I first met Catie at a party that Jack threw in 2000 or 2001. It was good to see them again. Our visit with them was short, as I wanted to reach our midway point by that night, which I did. Midway was Roseburg, OR, where we spent our first night. I'm virtually certain that the hotel we stayed at was the same hotel Jack & I stayed at when we moved up here in 2003. They had his name in the computer, and I remembered the room where the free breakfast was served.

Our first stop the next day was at Sunny Valley, OR, to see my former mother-in-law, Edith. I've always really liked her, and it was good to have a short visit. We met at the local general store so I wouldn't have to drive all the way to her place. We made Sacramento, CA by that evening. We were able to spend a few hours with my friend, Mike Blair, who perfomed my marriage ceremony to Jack. (To this day, he says that it was one of the proudest moments of his life.) He fell in love with the girls, and they with him, and he is now Uncle Mikey to them. Since his apartment is so small, we stayed in a hotel in Sacramento that night.

Our third day on the road found us at Fisherman's Wharf in San Francisco. I put Gabby in a stroller for that one since she's still so short. They enjoyed the sights and sounds. We had lunch at a place called the Rainforest Cafe. It was really cool inside. (It had a fun gift shop, too!) The upstairs was kind of dark, and it had a waterfall with steam from dry ice, large (fake) stuffed rainforest animals such as gorillas and elephants, and every so often the lights would blink and you'd hear the sound of thunder and rain, and the gorilla next to our table would appear to shake the trees it was holding onto & make many gorilla nosies. They also had lots and lots of fishtanks. While it was a little loud (and expensive), it was a nice vacation treat for us. It was an uncommonly beautiful day in The City with mild temperatures and NO FOG and some wind. We enjoyed ourselves just sitting on the grass in the sun and looking at the sights, too.


A street performer in SF

Inside the Rainforest Cafe

My girls enjoying the rare SF sunshine

That evening, we headed over to our friends', Dan and Patty's. We stayed with them for 2 nights. They are probably our closest friends and the girls' godparents. While it would have been nice to be able to spend more time with them, we enjoyed the time that we did have. Our first full day there, Patty & I went to Target and had lunch at Togo's with our kids. Sarah managed to get lost in Target. I thought she was with Patty, and Patty thought she was with me. I dashed through the store looking up and down the aisles in a panic. Fortunately, someone had taken her to Customer Service. About the time I heard my name over the PA system, I was at that part of the store. I haven't been that frightened in awhile, and I don't care to repeat it for again. Sarah and I had a conversation about what to do in that kind of case, and she knows that should that happen again, she is NEVER to leave the store with a stranger. I was so relieved to find her.

Also while we were visiting Dan and Patty, we went to the Wildlife Museum in Walnut Creek. Now that was fun. I got to see lots of live owls (a favorite of mine) & I got several decent pictures of them. We also got to see them feed the bobcat. That was one of the highlights of our visit down there. I lived in the SF Bay Area for over 40 years, and I never knew about that place.

Gabby, Aidan & Sarah sitting in an eagle's nest



One of my favorite picutres of a living barn owl

Our next stop was a hotel in Berkeley for one night. The following day, 3 nurses that I used to work with at Alta Bates Hospital in Berkeley met us for lunch. I hadn't seen them for years, and they'd never met the girls. It was nice to have an adult lunch, and the girls were pretty well behaved. It also reminded me that I really do love being a nurse. But, of course, they wanted to hear all about what we've been doing, more about how Jack died, what the story is with Gabby, and so forth. Hopefully I'll get to see them again the next time we're in the area.

We then headed to Monterey. I was hoping to see some other folks in Santa Cruz, but time and circumstances just didn't allow it this time. I'd learned about a very reasonably priced, kid friendly, bed and breakfast in Pacific Grove (right next to Monterey), and we stayed there for 2 nights. One of the things that I liked about this place was the wine and munchies in the eveing in addition to the hot breakfast in the morning. The room was comfortable, and the girls each had their own bed to sleep in!


On the couch at the B&B


The day after we arrived at Monterey, we headed to the Monterey Bay Aquarium. That was lots of fun. We all really enjoyed it. While I was bummed that they didn't have a reciprocal agreement with the Seattle Aquarium, the admission price, while a little steep, was worth it. We saw all kinds of things . . . deep ocean fish, kelp beds, tropical fish, jellyfish, seahorses, otters. We arrived just before feeding time for the ocean fish. We got over there quick and got good seats close to the glass. Every time a school of anchovies would come towards Gabby, she would start to jump up and down and clap, and when they got close to her, her childish joyful delighted laugter made it all worthwhile. It's amazing how a child's pure delight can brighten one's whole day. She just loved that exhibit and all of the other fishies that she saw. I think Sarah much preferred the hands-on stuff. I liked the jellyfish and seahorses and tropical fish. We must have spent at least 4 hours there. We also had lunch there and got a few items in the gift shops. (Doing our part to stimulate the economy of Calif!) After all of that, we walked up and down Cannery Row. Then we went back to our B&B and collapsed. (Actually, I was happy to get there about in time for a glass of wine.)










































The day after the aquarium, we started heading back up north. We wound our way back over the Santa Cruz mountains, up Hwy 280, down famous 19th Ave in SF and across the Golden Gate Bridge. I'd promised Sarah that we'd go across it, and we did. By this time, The City's typical foggy weather had returned, so there wasn't much to see off the bridge. We stopped at the view point so the girls could see the bridge from the other side. Then it was through the Rainbow Tunnel, which my grandfather worked on. (Yes, folks, for those who don't know it, I'm a CA native, born in SF.)

Gabby & Sarah at the Golden Gate Bridge vista point

We made a couple of detours in the towns of San Aselmo and San Rafael, just north of SF. In San Rafael, we stopped by to see a couple of people who were instrumental to me when I was a child. I'd left their phone number at home, so I couldn't call. We stopped by their house, but, unfortunately, nobody was home. Bummer. I also managed to find (after a lot of searching) the church where my uncle, Don's, ashes are located. I was able to pay my final respects to him nearly 2 years after his passing.

Then it was on to Santa Rosa, the town I lived in for some 29 years. My friend, Kirsten, was generous and went to her boyfriend's so the girls and I could have her 3-bedroom house to ourselves. We all had our own room to sleep in (luxury!), and I am very grateful. We also had time to hang out with Kirsten which is always enjoyable. The following day, we saw my former housemate of some 19 years, Norene, in Windsor, and my other long-time friends (and, at times, surrogate parents) Mac and Marian, in Sebastopol. This was the day of being true social butterflies.



Sarah in front of Kirsten's yard



That afternoon, we headed to my cousin, Faith's, house. She's actually my second cousin, but she's less than 24 hours younger than me, and we've always been friends. I also saw my great-uncle Alvin and my other cousin, Glen, who are currently living with her. The girls got to stay in her son's room. We shared a hot tub and lots of conversation. She just got back from hiking all 200 miles of the John Muir Trail, and she called me when I was headed north out of Monterey to let me know that she was back! So we extended our stay by one day.

The following day we headed home in earnest. Sarah wanted to take the "pretty way," so we did. It took FOREVER. We went up Hwy 101 to the Oregon coast. It took us something like 9 hours to get to the halfway point where we finally stopped in exhaustion. The next day it took hours and hours to get as far as Tillamook. It was a beautiful day, and there was a lot of traffic on the Oregon coast that day. We did stop at the Tillamook Chesse Factory for a look-see, some ice cream, our last flattened pennies, and our last souveniers. We then cut over to Portland for more familiar territory and, hopefully, faster travel. The plan worked great until we hit Tacoma where the construction started. We hit something like 4 different construction areas within 30 miles of home. Traffic, on a Sat. night after 10:00 through downtown Seattle, was all of 10 mph! I took the first exit I could. (As a consolation, I did win the new George Strait CD on the radio while stuck in traffic! Was on the radio, too!) We didn't get home until 11:00 that night. I tell you, Seattle never looked so good to me as it did that night.

So that's our car trip. It was our last great hurrah before I finish my refresher course & go back to work & Sarah starts kindergarten next week. It was good to go. But, to quote Dorothy in The Wizard of Oz, "There's no place like home."

Sunday, August 23, 2009

Sarah lost a tooth!

Sarah lost her first tooth tonight! She thought it was a piece of dried up corn in dinner. She spit it out and put it on the table. Later, I noticed that the tooth was gone. I had to look on the table for it since I hadn't cleaned up yet. She felt absolutely nothing. (I guess the tooth fairy will be visiting tonight. Wonder what the going rate for the first tooth is these days.) The one next to it will be out within days, too. It's also very loose. The adult teeth have already broken through. On top of all of this, she starts kindergarten in 10 days. My firstborn is growing up!

I will hopefully soon post an entry about our 10 day car trip. I think I need to install some software on my computer in order to get photos from Jack's digital camera onto my computer. My computer isn't even reading the card by itself, which is very frustrating. As soon as I have some images to post with the entry, I'll post something.

Saturday, August 8, 2009

Social Butterflies

It seems that we have been social butterflies for a couple of days this week.
On Thurs., we had our last official playgroup get-together. We've been meeting most weeks for almost 5 years now. We started when our older kids were about 8 months old. The 3 kids that still get together regularly all have birthdays within 8 days of each other. They will all be starting kindergarten this fall in different school districts. We've seen each other through the births of 4 babies (including 1 set of twins!). They've been very supportive when Gabby was so sick and since Jack died. I'm going to miss seeing them so often now. Owen and Nichelle are a couple of Sarah's best friends. We're hoping to still see each other on week-ends. It just won't be as often.

Owen, Sarah, Gabby & Nichelle

Then today was even busier. We had a playdate at a local park followed by a birthday party at Chuck E Cheese for one of Sarah's friends. The playdate was a lot of fun. It was nice to spend some time with other parents who are also friends of mine and let the kids play. They brought paint and fingerpaints, and a fun, messy time was had by all. (Dirt + paint + play = messy kids) Then it was on to Chuck E Cheese. The best word I have for that place is overstimulating. And that's putting it nicely. You can't hear yourself think let alone what someone is saying to you in that place. Poor Gabby. During the birthday song part, she was leaning against me, and I had my hand over her other ear. She didn't even want to eat her pizza because of the noise level. Sarah had more fun there. They did both enjoy the rides, which were free. However, I don't think that I will ever have a birthday party there or take my kids there for any other reason. If you spend too much time in a place like that, it can damage your hearing. Seriously. It was that noisy. We were going to go to a circle supper with UU church folks this evening. We got home, and I threw together a cherry cobbler. But, while it was cooling, we all wound up taking really long naps instead. I was glad for the rest. While it was a late night for the girls due to the late nap, they are now quietly in bed and squeeky clean.

We're headed to CA for our car-trip vacation later this week where we will continue the social butterfly thing. Of the days we will be gone (about 10) I think that there's only one day where we won't be seeing someone we know or staying at someone's house. Some days we will be seeing more than one person. We will flit from place to place until we are home. And the next thing we know, Sarah will be starting kindergarten. Now THAT will be a change for all of us.

Monday, August 3, 2009

She's doing great!

Today we had our cardiology follow-up at Children's. To make a long story short, she's doing great! Her heart function looks good. Her EKG was good. Her energy level is good. Dr. Lewin was very pleased with how she's doing. So pleased, in fact, that we don't have to go back for a full year! Woo hoo!

I've been asked when she's going to need her next procedure. The answer is: we don't know. Dr. Lewin doesn't think that it will be until "late childhood" (think 9 or 10). He's hoping they can deal with the stent and put in a pulmonary valve at the same time. He said that they wouldn't do it in 2 different surgeries. Now, that's a relief.

Gabby was fine with having the echo done. She got to watch Winnie the Pooh while they were doing it. She didn't like the EKG much, though. She doesn't like when they take the stickers off. They pull on the skin when you remove them, and it hurts. So, she still has the stickers on while she takes a nap. I'll take them off later in the shower or bath. She was great for Dr. Lewin and getting her height and weight done, too. Dr. Lewin even got a hug from her. She's such a champ. (She got 4 Sesame Street stickers, too! Plus 2 sugar-free suckers.)

While we were in the cafeteria, we ran into Dr. Jefferies, one of the ICU docs. He was one of the docs who put her on ECMO all that time ago. He remembered us (and her diagnosis and even where her room was!). He was pleased to see that she's doing so well. Gabby even gave him 2 hugs. He just lit up. What I'm learning is that she's one of their ECMO superstars. ECMO was made to help kids like her, and she's had a wonderful outcome. Not all kids who wind up on ECMO do as well as she has. They don't all make it, and some have long-term problems. I'm sure that seeing kids come back for follow-up when they're doing as well as Gabby is makes a lot of what they do worthwhile for the staff there. Me, I'm just glad that she IS doing so well. It's nice to have something good like this happen this year.

Sunday, August 2, 2009

Bye-bye binkies


Gabby was a binkie baby. We started her on them when she was really little because we had to keep her from crying due to her heart defect, and they were a help. She kept on with the binkies until well into last year. Her dentist and other doctors didn't have a problem with it, so we didn't wean her. Then, some while back, she started to self-wean. She'd go to sleep and not ask for one. She quit carrying one around. She seemed to just not be interested in them. She hasn't had one in her mouth since before Jack died.
The top drawer of the changing table has a window in it, and you could see the binkies in their little plastic bowl in the drawer. Tonight as I was getting her ready for bed, Gabby said, "I want a binkie." I told her, "You haven't used a binkie in a long time. I'm about ready to put them in the garbage." To which she replied, "I'll put them in the garbage." "Are you sure you want do do that, Gabby?" "Yes." So, I handed her the bowl of binkies, and she ran to the kitchen garbage and threw them away. When I found another one a minute later, she happily threw that one away, too. I told her what a big girl she is now. We said, "Bye-bye, binkies." to them. They are now truly a thing of the past.

This was taken last Dec.

Saturday, August 1, 2009

Craft Day

A lot of today was spent doing crafts with the girls. Yesterday, a co-worker of Jack's, Kristy, stopped by for a delightful visit. She brought these sock puppet craft kits for the girls. They couldn't wait to get started. So, first thing this morning, I got out the kits and we went to town. All 3 socks in each kit got decorated. They think they're great. (Thanks, Kristy!) Here's a picture of one of Gabby's:



Also, as some of you know, Sarah gets 5 shiny pennies every night before bed if she's been a good kid. If she's been really good, she gets a queen (Canadian) penny in place of one of the American pennies. She'd been doing pretty good lately, and I told her that if she made it through a straight week with queen pennies, I'd buy her a Pricness toy. She was on the edge at times, but she did it. So, today we went out for the toy at Target. We wound up getting this set of 2 Princess puzzles that after you put them together, if you stack the pieces in a certain order, they make a 3-D castle. We managed to get the 2 puzzles together. We stopped before we got the castle part done because it was getting late, and we needed to eat. I don't think I've ever had such a "crafty" day with the girls before.

Cardiology Follow-up

Just to let everybody know, Gabby has a cardiology follow-up at Children's on Mon. afternoon. She'll be getting a chest x-ray, EKG, echo, and doctor's visit. I'll post here to let folks know how it went. Keep your fingers crossed that everything checks out ok.