Saturday, July 26, 2008

Trail Ride

Today was trail ride day. We had a great time at the A-OK Corral. Gwenn, Ella and Viivi went on the ride, while Lucy and I hung out at the corral. Thanks to the wrangler who took over 30 minutes and just hung out, letting Lucy sit on the horse and "pony around" the corral. It was fantastic!

It's been hotter than crap here. Honestly, weather in Seattle does not prepare you for nice weather anywhere else. It reached 94 today, with super low humidity. At night it's down into the 40's, so the cool off is great - but takes until after 10p to cool the house off. We played at some of the streams on the property today, and in the auto sprinklers that keep the young trees alive.

Tonight Gwenn is running a fever - I'm not sure if it's just mild heat stroke, or if something is going on. She has been fairly healthy, and now that she is back on her meds she is doing great! Her weight is almost 60 pounds - a weight that frankly I never thought I would see for her until she was older. The feeding tube is certainly making a difference - although I'm concerned that the minute she is off of it, her weight will plummet since she does still not eat orally.

Here are pics from our day...

Friday, July 25, 2008

Wyoming Vacation

We are finally on vacation, and I thought I should get some pictures posted. Thanks to Lorna for hounding me about why they are not up on the site yet. :-)

We had a great drive to Wyoming. We stopped at some great Oregon trail sites, and took advantage of a captive Lucy and are working on her potty training. So far, so good. We also got checked out by local critters at our lunch stop (hanging in the tree)...

We stopped in Boise for the second night, and had a great time visiting with friends MeDenne and her daughters Kendall and Bethany. Bethany is also from Pingnan, and I met the family while we were in China together. The girls had a great time, and we had the hotel pool mostly to ourselves - it was great!

We arrived in Moose last Sunday afternoon after a long, hot drive across Idaho. When we arrived it was only in the 80's here, so much nicer. Here is the first look at checking things out. The girls got new dresses at Target, and are so excited to have them on and be hippie girls... Lucy is wearning her new jammies with Dora on them, and thinks they are just as neat as the new dresses. It was tough to tell her that she could not wear them into town.

The scenery is lovely, and it didn't take long to find our first herd of bison the first day out. They are not as many as there used to be - not sure where they are hanging out, but it is not the massive herds that I recall from even a few years ago.
We have gone into town and done some shopping - and on our way home, while we were trying to outrun softball sized hail, we saw these amazing rainbows.
We also had some sad news this week. For the past year we have been planning on sharing this vacation with our friends Lorna, Mati and Penelope. However, about a year ago Penelope was diagnosed with mitochondrial disease ( - which is not a nice thing to have. Unfortunately, a few days before coming she got sick and they are unable to make it. In both WY and GA there are many of us expressing our hatred and dislike of mito. While it was a good decision for them to stay home, it doesn't mean that we won't miss them.
The first expedition we had was a ride across Jenny Lake, and short hike up to Hidden Falls. It was warm, but the kids did well. Lucy made it the whole way, including up the hill and down - all without falling into the rain gorged river...
The cabin is fantastic. Dad bought this property just about 30 years ago - I remember getting the very first picture of the land from him - just his old '72 Dodge Conversion van parked in the middle of sage, and I thought he was nuts. It did not show the view the property had from where the van was parked. Since that time Dad first built the "little house" - where my grandparents lived every summer for many years. Later on, the "big house" was built, where we are now staying. Dad will retire here in another year or so, and I hope we can still come and take over the cabin. I love being here - when I was a kid, there were fewer homes down here, and I would take off for the river and be gone all day. It's tough to find a way to the river now, with all the new homes - wait - mega-mansions being built down here.
Yesterday, we made our first venture north to Yellowstone. It is such a great place, but I admit that I won't head there on a weekend - and the choice of Thursday worked well. The first thing that we saw was Old Faithful erupt - only a 15 minute wait, so we had great timing.
So far it's been great. We've been having a great time, seeing lots. This next week we are still going on a trail ride (Gwenn, Ella and Viivi), going on a scenic rafting trip (all except for Lucy) and hanging around town and the cabin. Here is the last picture for you to look at - it sort of tells how things have been going!

Wednesday, July 16, 2008

Weight...and waiting

Well, we don't really have an animal scale, but I liked how this one looked. Gwenn has moved, in animal terms, from mouse to moose. Well, maybe not a moose yet - more like a mid-sized dog. Definately not a pig, but doing better. Gwenn now weighs 58 pounds! Since the hospital 2 months ago she has gained 14 pounds, and gone from the 1st percentile to the 24th percentile in weight for her height/age.

So the waiting game starts. We'll keep the ng-tube since she still doesn't eat enough orally to maintain or gain weight. The Periactin is helping - I think that is what has made the difference. Two weeks ago she was at 52 pounds - and the last 6 pounds were in the past 2 weeks since starting the Periactin. It's also helping give healthier skin, but no relief to the itching.

The doctor is open to some of the other areas to investigate - we are waiting for a GI consult at Children's, will follow up again on her EEG/VEEG to ensure that there are not "silent" seizures that are occuring, and they are willing to consider researching mito. Now, the chances are low, but since a good friends daughter has been diagnosed, it is worthwhile to consider since Gwenn does fit in the high level definition for mito.

So, we are setting out for vacation - not only from work, but from therapies and doctor appointments. The craziness will start again when we return, but I will enjoy it while we are gone!

Wednesday, July 9, 2008

Does not play well with others...

It's a sad story to share, about how my one year old Canon Rebel XTi and my daughters pink Nalgene bottle filled with chocolate milk do not mix.

To go back a ways, last week Gwenn's ng-tube came out, which wound up being a call home and then a trip to Children's ER to have it re-placed. Gwenn brought with her a bottle filled with chocolate milk. In my bag - my beloved Canon camera. At some point, whether by accident or to get back at me for having to get the ng-tube replaced, the Nalgene wound up in the bag.

Did I neglect the fact that Gwenn took the stopper out on the bottle so liquids would flow freely?

Needless to say, I am now down one camera body. Thankfully the lens, battery and memory card survived. I am also now in the market for another XTi body. If anyone knows of good deals (with English menu's on the camera, FYI - another story entirely) - please let me know.

Working from home...

We call it "WFH"... my kitten thinks it's prime napping location. While it's better than her walking across my keyboard - it does count down on accessing my stuff if I haven't unloaded the pack. This picture was taken the other day, however she is again camped out on the pack. I'm learning - today I unloaded the pack before she fell asleep. It is pretty darned cute, though...

Tuesday, July 8, 2008

National Parks Access Pass

Thanks to the National Park Service for their program that allows permanently disabled Americans to receive a free, lifetime National Parks Pass - called the Access Pass. We will be taking advantage of this during our summer vacation, and look forward to making things more affordable by having the pass - and being financially able to spend more time at our favorite Wyoming Parks - Grand Tetons and Yellowstone!

Wednesday, July 2, 2008

One Year - Happy Anniversary Lucy!

It's hard to believe that it has been a year - and then it's easy to believe that another year has gone by. Today, July 2, is the one year anniversary of Lucy's adoption in China. It was a hot, amazingly sticky day in Fuzhou, not too far off what it feels like in Seattle today - and we had been preparing most of the day after travelling to Fuzhou from Beijing with the two other couples who were meeting their children - Scott & Chris, and Travis & Michelle. After days swealtering in Beijing and wondering if we'd ever see blue sky again, we set off for Fuzhou.

The actual getting ready to meet the kids was a funky affair. Far too much running back and forth as we learned they had forgotten to have us copy this document, or bring two copies of another document, to prepare this cash or that voucher, this form to have ready - and then getting it all pulled together. After a few false starts to actually walking into the conference room where we would meet the kids, in we went. We were joined by Lynn, who was meeting her older son who is from Lucy's orphanage.

As we sat and waited we tried to get ready - food out, toys out, cameras ready or not ready... And then SLOWLY the kids started to arrive. Malone literally RAN into the room to meet his mom Lynn and his new sisters. By the time we figured that he was there, I was able to see Lucy coming into the room with the Director of her orphanage. She was so small - smaller than a 27 month old should have been, quite frankly. They handed her to me, and she was so light - and to my suprise, in no diaper at all. We got to know each other with cheerios and toys. She would not take off the little backpack that she had arrived with, and in holding her I knew I would have to shop for new clothes - the ones I brought would be way too big. (Note: she is just starting to fit into those clothes this week!)

After about 15 minutes, Shen arrived for Travis & Michelle. Not to be outdone by good behavior in Lucy, Shen came into the family with a BANG! Yelling, screaming, and crying - poor guy! He was not sure about this new mama and baba and wanted all of us to know. Lucy, for her part, just wondered what the fuss was about. Shen wanted nothing to do with baba, and sat on mama's lap screaming. None of the balls, stickers, cars would suffice to distract him. Thankfully - there were bubbles - which proved to be a GREAT distractor.

By the time he settled down, Jade arrived for Chris and Scott. Not sure if she should scream, she settled for something in between - tears and unhappiness for sure, but not the raw emotion shared by Shen. She settled in with either her mama or baba, and I think immediately realized that here were folks who could worship her!

A year later, Lucy is finally the size of the child I was anticipating getting last year. She is only a few months older than what I thought she would have been. After returning to the states, bone scans confirmed my belief - that she was considerably younger than her paperwork stated - anywhere from 6-10 months younger. During this past year I have legally changed Lucy's birthdate by 4 months - taking the 8 month average for how much younger she was, and splitting the difference, just in case there is a mistake. However, each day in watching her developmentally I believe that she is probably about 8-10 months younger than the 27 months she was supposed to be, which would have put her at 17-19 months old when I got her. Hopefully she will like the new birthday, and not fret too much that I changed one important piece of who she was and her story from China.

Lucy has come a long way in the past year, and still has quite a journey. She is one of the most spirited and smart, independant and daring little girls I know. She loves her big sisters, and copies them far too often. She is very healthy thanks to surgeons in China who repaired her heart, and loves to laugh. Happy Adoption Day, Lucy!