Upcoming heart cath

Wow. It's been a long time since I posted here.

We saw Dr. Lewin over the summer. He is concerned about the stent in her left pulmonary artery causing reduced blood flow to her left lung. Rather than exposing her to the radiation involved in a lung perfusion scan, it's time for another heart cath. They are going to try to "fracture" the stent so it can be opened more and allow normal blood flow to her left lung. It will also be used to get a more accurate picture of the flow and pressures in her heart. If the attempt to fracture the stent fails, then it will need to be removed surgically. Not immediately, but it will need to be done. Not my favorite thing in the world, I can assure you. Or Gabby's for that matter.

Cath is scheduled for tomorrow, 9/28 at 10:30 am.

Cardiology Visit and more poop

Wow. I can't believe it's been a year since I last posted here. My how time flies! Much has happened in the last year. The big deal is that I bought a house and we moved about 2 miles from where we were before. The other big deal is that Gabby starts kindergarten this fall. And we still have a few medical issues to contend with, but nothing nearly as tough as what we've been through.

Today we had her first heart check in a year. She's been pretty stable from that standpoint, which is why I haven't written anything about it in so long. Going a year between cardiology visits has been nice. But recently I've noticed that she's been more tired in the evening, or she's complained more of fatigue after we've been walking some. Of course I mentioned this to Dr. Lewin today. Her echocardiogram doesn't show any alarming changes at this point. Blood flow velocity through the stent in the artery going to her left lung looks good. Her right ventricle is working fine right now. Her murmur is the same. He understandably doesn't want to do anything invasive or expose her to any additional radiation unless it is absolutely necessary. So here's the bottom line: we go back in 6 to 9 months instead of a year. We'll see how tired she gets going to full day kindergarten and whether or not she adapts well to it and go from there. She'll still need that stent dealt with at some point down the line, and at some point she'll need a pulmonary valve placed. And cardiology visits will be a part of her life for as long as she lives, which should be a good long time.

Then there's the ever-present issue of Gabby's poop or lack thereof. So I did take her to the special clinic last year. Due to insurance issues, I didn't take her back for some while. Unfortunately, I backed too far off of her poop medicine, and she never got potty trained. When we had the x-ray done for that clinic visit, it turned out that she was impacted, and I didn't even know it. So, with their guidance, I started giving her lots of different stuff to get her to go and get her cleaned out. Our last visit showed that there is still some impaction left, but there's less there than there was before. That added even more poop medicine to our daily regime. The really good thing here is that since we've upped the meds, she has started to poop on the potty! Woo hoo! She sits to pee, and she poops at the same time. I don't think she's had poop in her Pull-Up for awhile now, which is really good. There is light at the end of the tunnel.

I promise, next entry will be more about life and the new house and such.

Constipation

Well, this week found us in-patient at Children's Hospital for the first time in almost 2 years. We were there for 4 days, and we came home last evening. This time, however, it wasn't heart related. It was poop related. (Fair warning: if you don't want to know more about poopy issues, quit reading now while you're ahead.)

Gabby has always tended towards constipation. She's been on MiraLax for a long time. However, over the past couple of months, she's tended to have a bigger belly than usual. What was happening was she had an old partial poop plug in there, and liquid poop was going around it. I've had her to the doctor more than once for this problem. Each time we'd up her medication or add something new. We recently added enemas to what we were doing as needed.

This last Sun. night, I gave her an enema because what we were getting was more liquid with flakes in it. I'd been getting darker liquid with pieces in it. (Leave it to a nurse to actually look at what's in the Pull-Up!) She really resisted, but with the help of a friend, we got it done. A little while afterward, Gabby started really hurting. She was in so much pain, she was lying on the kitchen floor with an ice pack on her tummy crying. I called the doctor's office, and they told me to take her to the ER. So . . . after my friend got here, off to Children's we went.

They did an abdominal x-ray, and they examined her. She was really distended and uncomfortable. I gave them the whole history & answered their questions. They decided to admit her for a "GoLytely clean-out." This entails putting an NG tube through her nose and into her stomach and giving her GoLytely through that. GoLytely is like super strength MiraLax, and it's what you have to drink before having intestinal surgery or a colonoscopy. She needed so much that there was no way she could drink it all. They also gave her enemas on top of it. Plus she got IV fluids since she had absolutely no appetite during all of this.

In the end, she got something like 2 1/4 gallons of the stuff pumped into her and a total of 3 enemas. For a couple of days of her hospitalization, we were having problems with vomiting as well. They'd turn off the GoLytely for awhile until her stomach settled down. It also meant that it was hard for her to start eating again. They wouldn't let her go until she could keep clear fluids and soft foods down.

So here we are the afternoon after discharge. She has an appetite again. She's active. Her tummy is softer than it's been in some while. She seems happier and more comfortable. (Wouldn't you be?) Yes, I'll make it a point to get more fiber in her diet and get her medications into her, which she's pretty good at taking. She has a visit with a specialty clinic in about 10 days for regular follow-up and a follow-up visit at her pediatrician's office on Monday. Also on Monday, she has her annual check-up with her cardiologist. Watch for visit results here.

Many thanks to my friend, Lisa, who minded Sarah through all of this. She's the one who helped give Gabby the enemas when I asked, and when we had to go to the hospital, she was right here and made sure Sarah was cared for while I was with Gabby. She also made sure Sarah made it to the hospital every day to see us. I couldn't have done it without her help.

Shaun White

Olympic Fever is over for the next 2 years. But there's something that I still need to say.

As many people know, Shaun White is the USA's halfpipe snowboarder who won the gold medal this year and in the 2006 Olympics as well. He's a young athlete, seems the picture of health. Yet what not everybody knows is that he was born with the same heart defect Gabby has, tetralogy of Fallot. He had 2 open heart surgeries before he was a year old. While he doesn't deny that he was born with this defect, he does state that he "had" a heart defect.

I spoke with Gabby's cardiologist about this a couple of years ago. I was impressed because I realized that much more was possible than I had realized. He stated that, while it was possible, there are some things that will always have to be followed by a cardiologist. So, is Shaun getting regular cardiac checks? If so, why isn't he more upfront about the medical monitoring that is necessary to be an athlete of his caliber with his heart history? A part of me wants to think that the team docs aren't letting him compete without additional medical clearance. Yet, I also know that many young adults with a CHD history are lost to follow-up. Once you have the surgery, you aren't "fixed for life." Nobody knows for sure how your heart will react several years down the line and after the heart changes with growth and increase in body size. CHD patients require good follow-up for life.

So here's my issue: Is Shaun White getting good, regular cardiology follow-ups? And if so, why does he not speak more about being a CHD survivor? He has shown us what CAN be done with a CHD history. I just wish he'd use his fame to educate the public more about the medical care that is necessary to do what he does.

Happy Heart Anniversary

Today is the 4-year anniversary of Gabby's open heart surgery! Wow! The time has just flown by. It marks the day that they fixed her heart, but we almost lost her. ECMO was terrifying. But we got through it as a family, and it made us stronger.

Gabby is doing very well. As I mentioned in a previous posting, she gets to go an entire year between cardiology visits. She has good energy. In fact, at times it seems like she's constantly moving. She's smart, loving, and she can have quite the temper at times. She can also be pretty sneaky when she wants to be. In other words, a pretty normal kid except for the scars. At least that's how we try to treat her.

She still has problems with her gross motor milestones. I mean, she can walk and run, and she can jump now, but she's not where other 4 year-olds are. That's why she gets weekly physical therapy through the school district. She's also still really short. She's still just below the 3rd percentile for height. However, she comes by it honestly considering that most of the folks on both sides of her family aren't terribly tall.

It's a feeling of accomplishment to have a child (and family) who have been through what she went through (and we went through together) and come out the other side doing as well as we are. According to her cardiologist, she's an ECMO superstar. That's some of the best news I've ever had. It shows that a child can go through all that she did and do well. Her outcome is exactly what the doctors and nurses who work with these types of problems strive for. While we have more surgery ahead of us during "late childhood" (age 7 to 10), we've been through the worst of it. We hope. If you know a family with a child with a CHD, let them know that it really CAN turn out ok on the other side of the surgery.

Disneyland Birthday!

Gabby turned 4 on 11/1. So, this year, instead of having a party here, I decided to take them to Disneyland for Gabby's birthday. She got in for free that day, and we were able to stay with Jack's neice, Nova, and sister, Toni, thereby avoiding hotel and car rental costs. It was their first airplane trip, too!

I managed to keep the trip a secret from both girls. Of course, their teachers knew, and I arranged for our neighbor to look after Clem the Cat. They didn't even know that we were going on a plane trip until about an hour before the shuttle came to take us to the airport when I picked Sarah up from school.

I finally told them the day after we got there (Halloween) that we were going to Disneyland the next day for Gabby's birthday. There was, of course, much excitement. Both girls had wanted to go to Disneyland for some while. Jack's sister, Toni, had previously worked there, and she came along and really helped make it a great experience. Also, Jack's neice, Nova, met up with us there, and she added to the fun as well. It was so much easier to do Disneyland with 3 adults and 2 kids as opposed to 1 adult and 2 kids!

They both dressed up as their favorite Disney Princesses for Halloween. Sarah dressed as Belle and Gabby dressed as Aurora. We went trick-or-treating in Nova's neighborhood. Gabby got so much candy that she wound up dragging her treat sack. When unsuspecting adults would hold out the bowl of goodies, she'd grab as much as her little hand would hold. I almost fell over when I realized how much sugar she'd gotten away with. Of course, I had them wear their Princess outfits to Disneyland. We couldn't do it any other way!

The day before we went to Disneyland, Toni helped the girls make very special memory books for the day. They got to choose which paper they wanted for the cover. Toni printed out stickers of a bunch of Disney characters. Then a sticker for each character was put on each page so the characters had their own special page to sign. It was much more special than a store bought memory book, and the characters were very pleased that they had their own page. It added to the magic of the day.

The day at Disneyland was magical. Gabby got a special button saying that it was her birthday. The rest of us got buttons that said, "I'm celebrating!" Every time we turned around, someone was saying, "Happy birthday, Princess!" It was pretty cool.

Gabby doing the Happy Dance

After we got into the park, stashed some stuff in a locker, and rented a Disneyland stroller, we rode the train so we could meet the Princesses. The train ride was fun, and I especially liked how they constantly reminded parents to watch their kids. They even had signs reminding us.

The train ride

Meeting the Princesses was one of the best stops we made. Sarah was dressed as Belle, and Gabby was dressed as Aurora (AKA Sleeping Beauty). The first Princess we met was Ariel, also a favorite of both girls. She was so sweet with them.

Waiting to meet the Princesses

Next in line was Aurora. She immediately asked Gabby if she'd been in her closet since they were dressed pretty much the same. Aurora showed them how to twirl in their dresses, which was a lot of fun.

Then, much to our surprise, Belle stepped up. It was amazing to get a picture of both girls dressed as their favorite Princess with those Princesses. This is something that just doesn't happen. It was as if it was planned that way and utterly magical.

The last Princess we met was Mulan who was very nice.


Then it was off to meet Mickey and Minnie. We met Minnie first and went through her house, then we met Mickey on the set of one of his movies. Gabby didn't like the darkened theater we waited in much, but she had a good time meeting Mickey.





Next it was off to do a ride or 2. We rode on the Dumbo ride. Gabby and me in one, Toni and Sarah in another. Nova passed so she could take pictures. Then we did the carousel. Then we went through Aurora's castle.





From there, we went to Pixie Hollow. The girls got sprinkled with pixie dust on our way there. The first fairy we met was Fawn. Fawn is the one who talks to animals. Sarah has a Fawn doll hanging above her bed, and she helps take away bad dreams. Of course, Sarah had to tell Fawn this, and Fawn was quite impressed.


Then, of course, we met Tinker Bell. Tink is one of Gabby's favorite characters. A few days before our trip (when she had no idea we were going), on the way to preschool one morning, Gabby said, "When we go to Disneyland, I'm going to meet Tinker Bell, and when I do, I'm going to run up to her and give her a hug." And that is exactly what she did. One of her souvenirs is a baby Tinker Bell doll that she just loves.


Toni had generously decided to make reservations for Pat-A-Cake, which is a Disneyland birthday party of sorts. Everybody gets their own little cake to decorate. Mickey and Minnie are there, and the birthday kids each get their picture taken with the Mouses. It was fun. I think Gabby wore more frosting than she ate, though.


Of course, we had to do more rides. We rode Pirates of the Caribbean, Nemo, Pooh, and Autopia. Autopia was a blast. I let Gabby "drive" while I did the pedal. We'd hit the middle track, and she'd laugh her maniacal laugh, then we'd hit in the other direction, and she'd crack up some more. I don't think I stopped laughing that entire ride. Toni was in the car behind us, and she could hear Gabby laughing!

We ended the day with fireworks and some souvenir shopping. We were walking out of the park at 11:50 at night. We'd spent something like 14 hours there. We were all exhausted. And it was so worth it.

Gabby & Nova waiting for fireworks

(More images available on Facebook)

Fishies!

It's been awhile since I last posted. Sorry about that.

After we got back from our CA vacation, I kept my promise to Gabby and Sarah, and I got a fish tank. Rather than borrow one, I went and bought a 10 gallon starter kit at the local pet store. It came with most of the stuff I needed to get started, including fish food. However, it didn't include gravel, plants, test strips, or the actual fish. After setting it up, I let the water "settle" for a couple of days. Then we went and got our first fish. We've added them slowly to the tank, no more than 3 at a time every week. We are now at full capacity.

We now have a total of 10 fish in this tank: 3 zebra danios, 3 neon tetras, 2 black mollies, and 2 sucker fish. The sucker fish like to hide, and it can be a challenge to find them sometimes. They like to eat the algae. I call them Fang 1 and Fang 2. They aren't very pretty, but I guess every tank needs a bottom feeder or 2. The neon tetras are like the airheaded blonds of the tank. They're really pretty, but they seem to confuse easily. (They're either blonds or hippies.) They like to just hang out, eat when it comes, and be the cool pretty fish that they are. The zebra danios are the first fish that we got. While they are zebra striped, they also are kind of shimmery in the right light. They like to chase each other around the tank. Really fast. The black mollies are the large black fish. One of ours has a little white on the bottom of its head, so I call it Whitebeard. They like to eat the algea tablets that are meant for the sucker fish. We recently lost one of the black mollies (don't know why), and when it was sick, the other one nudged it like I've seen cats or dogs do. I've also noticed that there isn't much inter-species mingling going on.

So, Sarah decided that she wanted goldfish to call her own. So we have a second goldfish tank. It is very princess. She has named them Yellowie-Goldie and Reddy-Orangie. Hey, I just report the names. They seem to be doing well. They get fed once a day. That tank is in a different spot than the other one.

We all like to watch the fishies. I'll even stop to watch them sometimes. There's something relaxing and soothing about it.

What A Ride!

This is typically a family & kid activity blog, but this blog entry is an exception.

I've been looking at the various life changes I've gone through in the last 10 years, and there are a lot of them. Here's the list of the major ones:
- graduated from nursing school
- finally split up from my ex-husband
- fell madly in love with Jack
- moved to a different city (Oakland, CA from Santa Rosa, CA)
- married Jack
- moved to WA state
- had my first baby just shy of my 43rd birthday
- had my second baby who had a serious congenital heart defect and came very close to losing her
- became a widow

That's almost one major event a year! (The first 4 happened in an 18 month period of time.) That's almost an adult lifetime's worth of stuff packed into less than a decade. Dang.

Makes me wonder what the next decade is going to hold for me.

Moving on Up

It's been a week of kids moving up in the Darkhand household this week.

First, it was Sarah's first day of kindergarten on Wed. She loves it. She's in for a full day, which she seems to be quite ready for. She's already had 2 P.E. classes. Her teachers job share, and I like them both. For us, the first day was more exciting than anything. I felt like my face would crack from all of the smiling I was doing. Of course, I took plenty of pictures. Her first few days have gone well, and her teachers have told me that she's doing great. It's been very exciting. It's also meant a change in schedules ~ off to bed earlier, up earlier, and out the door in the morning!

Sarah & her teacher

Lined up to go into class for the first time

Meanwhile, I decided to put Gabby into daycare 5 days a week. I think the consistency will be good for her. She likes everybody there, and it gives me time to do things I need to do around here, or to just have time to myself. Well, today she got moved up to preschool! Potty training has been the issue. She's been staying dry there and taking herself to the bathroom. So, they decided to move her on up. Other than her slow potty training, she is so ready for the move. She did great today while there. She has the same teacher that Sarah had there.

So, it's been a week of exciting changes for my girls.

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.

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.

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."

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.

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.

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.

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.

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.

Aquarium Visit

As some of you know, Gabby loves "fishies." Her favorite stuffed toy is a multicolored fish. Her favorite bathing suit has fish on it. And she loves to watch them swim. I recently took the girls to the Seattle Aquarium. They really enjoyed it, so I bought a membership.

Our friends, Tom and Gail, have been visiting from CA. They visit us every year on their way to Canada for their summer vacation. I decided to use my guest passes to take them to see the aquarium with the girls today. A fun time was had by all.

Our aquarium is a pretty nice. As you walk in, there is a floor-to-ceiling fish tank with many, many fish swimming in it. There are little benches to sit on while you watch. (I could sit there for hours sometimes. It's very relaxing.) I call it the Wall o' Fish. It's a name Jack would have liked. I even had Tom take our picture standing in front of said wall.

Another fun exhibit is of what happens when a wave occurs. This is a really long tank with a curve at either end. At the end where the wave is generated, you can tell that the wave will happen soon. Then, the wave is formed, and it travels the entire length of the tank to the other end, and we get to see what happens to the sea life under the surface as it rides out the force of the wave underwater. It's pretty cool. We were standing at the wave generation end. Every time Gabby could see a wave was coming, she'd say something like, "It's doing it!" and jump with joy and excitement. As soon as the wave came, both girls would just scream with laughter. They did this the entire length of the tank. When they saw the wave, they laughed loudly. Some of the attendees got as much fun out of watching my girls as they did watching the fish, if not more!

They also got to play in the tidepools, but they were more interested in playing with the water than touching the starfish. We also saw lots of neat fish in tanks. Of course, Gabby always wanted me to lift her up higher so she could see the fish better. And there was the obligitory visit to the gift shop. Sarah and Gabby both got a new book each, and Tom got Gabby her very own stuffed Nemo which is now a prized posession.

I've promised Gabby a fish tank after we get back from our CA vacation next month. I think she'll really enjoy it. I already have a place picked out where we can all enjoy it.

Sarah hamming it up

She could just be short

This was the week for the visits at Children's regarding Gabby's shortness. We've seen both genetics and endocrine this week.

Our visit with genetics was very reassuring. While she does have the heart issue and some gross motor delay and short stature, they don't think that there's any kind of genetic component here. Additionally, some of Jack's relatives were shorter than me, so it could just be that she was going to be short regardless of other issues that she might have. The fact that she is cognitively on track is very reassuring and points away from a genetic problem. Relief number one.

Today we saw the endocrine folks. According to them, she's growing at a good rate. Her growth velocity is in the 10th percentile, and she's growing on her own growth curve. While it's below the 3rd precentile, she's still on the right curve. Her weight is also maintaining well. They are certain that she doesn't have a growth hormone issue. In fact, the doctor says that she is on track to be my height or a little taller. That's not what her pediatrician told me, and I asked about it, but she was sure. What they really look at is how fast she's growing, and she's doing fine in that department.

So, while Sarah is really tall for her age, Gabby is just short. It's not a problem medically. She's just going to be short like much of the rest of her family. What a relief.