Finley Spina Bifida Update

First I had to start with a cute picture just for the heck of it!!!! I love this picture-- pure joy on Finley's face-- LOVE IT!!!

OK, so we have some updates of where we are with Finley's Spina Bifida (SB) and out course of action. We had Finley's first SB Clinic yesterday. SB Clinic is where all major specialties that deal with SB-- Rehabilitation, Urology, Neurology and general Peds-- are all in clinic in the same place and you are in a room and they each come in one after the other to do their assessments. It is a long appointment (they tell you about 4 hours) but for us, since we were the last appointment of the day, it was only about 2 hours. Clinic is to monitor progress and to watch for changes. Most SB kids go to clinic during their growing years every 6 months to a year. They get baselines and then check to see if there is any deterioration that may be caused by being tethered or for whatever reason. For us, this was our first appointment where they were looking for baselines and also to see if they suspect tethered cord.

So we started with the Rehabilitation DR who immediately started asking us all kinds of questions about if Finley catheterizes and we said no. Then she said-- oh then she diapers-- we said no. She stopped and looked at us and we said she is 100% potty trained and she just kind of stared at us like it was totally unexpected. Then she moved onto the bowels and asked about our regimen. We said we didn't have one because she is 100% bowel potty trained also. She again just looked at us with a dumbfound look. She then scrambled for the results of Finley's renal ultrasound to see if she had any problems with her kidneys-swelling, etc. and of course there was nothing-- a perfect ultrasound and her whole renal system looks perfect. The rehab DR was just so funny. She had Finley walk and did some stuff with her feet but she said she could not believe how good she looks and said that they NEVER see kids like Finley and from a rehab perspective, she is 100% PERFECT!!!! We were thrilled!!!

Next came urology. He was great! Nice awesome DR who was just as shocked with how high functioning Finley is. The Dr. does want us to get 2 very important tests done that are not fun for Finley but he feels that these are necessary to get baselines and it will help us to determine if, in the future, she shows decreased bladder and bowel function we can point to the possibility of tethered cord. The first test is an X-Ray of her bladder. It is not comfortable and poor Finley will hate it but it is necessary. The second is some Uro Dynamics test. Not sure why they have to do that but again, it will help us in the future so I have no issues putting Finley through some temporary discomfort in an effort to help with diagnosis in the future.

Next came neurology. This was the DR. we have known for a while and the one we love!!! There has been some indecision with neurology because Finley's initial MRI showed her to be exceptionally tethered but she shows ABSOLUTELY NO SYMPTOMS of being tethered. So really, tethered cord is a clinical diagnosis- not radiological- therefore, according to Finley's lack of symptoms, she currently is possibly not tethered. So, the decision for now is to do nothing. Follow her in clinic and watch for possible symptoms, but for now do nothing. I did ask about having plastic surgery look at her large lipoma on her bum and they said they rather wait a bit and then maybe have plastic surgery involved later. They said if they have to go in and untether her in surgery later down the road then they would take care of removing the lipoma then, but for now, they do not want to bother it- which is not what I wanted to hear. I guess I wanted them to say that we could look into removing it. I know it is kind of vein but I really worry about Finley becoming self conscious about her "bump". It is not obvious to most and with most of her clothes you don't notice it, but it is there and a few kids have made comments this summer since she is in a bathing suit so much. They are not mean comments but they are often "what is that bump on her butt". Just kid curiosity, but I don't ever want her to feel bad about it. I don't know. I will get over it and maybe sometime down the road we can get look into getting it widdled down. Back to the neurologist-- he thought Finley was amazing and could not believe how agile and fit she was! YAAAAAA!!!!

Last came the director of the clinic who we had seen once before. He echoed what everyone else said and even brought neurology back in the room to watch Finley climb up the chairs because he was so amazed by her agility. They both just stared at her in amazement and even said to each other that maybe she doesn't even need to be followed by clinic. Of course she will be followed but they were just amazed and said that they rarely see a kid as high functioning as Finley.

Overall, a wonderful clinic visit. They ordered a few tests which we will do in the next few weeks or so and they said she is clinically doing amazing! So, no surgery for now. YAAAAAA!!!!!! That is our update. Our little nimble miracle is just as good as can be! We could not be more thrilled!!!

Gymnastics Time!!!

*by the way, this post was all done by email-- totally cool feature of blogger I didnt know about-- try it out!

The girls have finally-- officially-- started gymnastics. Dance if fun for them but Mia just has a very natural ability with gymnastics and Finley seems to follow suit so we decided to officially enroll both of them. Mia has self taught herself the round off, cartwheel and other way beyond her age skills. She can jump into the middle splits without even thinking about it. She has an amazing strength to body weight ratio and she is very muscular. That serves her well in gymnastics. We decided to split the girls into different classes because their skill levels were so different. Don't get me wrong-- Finley is quite adept as well but is more at the front roll/ back roll level. Anyway, they had a great time at gymnastics and we are so fortunate to have a great kids program at our local gym. Mia is in Kinderstars where they work on more tumbling/ bar work and Finley is in Tiny Stars which is a preschool beginners class (one step from mommy and me). Both girls did amazing and are so excited to go back again soon!!!!

Mia getting ready to go on the long trampoline-- sorry there are few pictures of Mia. I started taking pictures with my phone and then moved to my other lame camera so I cant seem to get the Mia pics off my phone-- sorry!

Finley doing her side roll

Clearly enjoying herself

Finley on the zip line thing

Finley on the little balance thing (sorry for my lack of gymnastic terminology)

Bouncing down the trampoline-- gotta love her little cheeks hanging out. Her lipoma (bump) on her bum always pulls her undies or whatever she is wearing up her bum. It is kind of cute but I am always pulling whatever she is wearing down.

Summer This and That

We have been doing a lot of summer hanging out. Not a lot of exciting and super cool things- rather a lot of relaxing, swimming, hanging around the house (and free things :). Consequently, I have been searching high and low for easy--non mess making-- things to do so we all don't go stir crazy. Yes we have been on 2 camping trips and we have one more planned the first week in August but other than that, we are spending time relaxing and just hanging out. We have 2 Chinese students, Dwayne and Bruce, staying with us for 2 weeks. They are part of our church's program where 100 students from Schezwan come to the US for over a month and they spend 2 of those weeks with our church learning about religion, American culture, English and a bunch of other cool things. We have hosted students for about 5 or 6 years now and we enjoy the experience each year. Our boys this year are very sweet and I will post pics of them soon. For now, here are a few activities we have engaged in :)

PS- still trying to perfect the mobile blogging but it is not the picture quality I want so I'm annoyed but still working on it.

Making sugar cookies. Yes a fun summer activity to fill the time-- the problem is now in the boredom of summer I am eating those cooking and I must say I am putting on a few pounds for sure. I can tell I am eating out of boredom and my thighs are having trouble fitting into clothes-- uggg!!!!

Mia proud of her creation

Finley working on her creation

Pre- decorated. OK, now for the lameness of me-- I can never save cookie cutters. Somehow they disappear all the time. Soooooo, the only cookie cutters I could find were Halloween ones. Therefore, we decorated cats, moons, pumpkins and broom sticks-- lovely!! BTW, the girls could have cared less what they were decorating as long as it involved lots of frosting and sprinkles, they were good!!

We have also done lots of coloring, drawing and painting. My nieces live around the corner- and we have a pool-- so they have been spending lots of time hanging out with the girls. Here they are working on their painting projects:)

My little hair dresser!!!

I am playing around with trying to post from my Iphone directly to my blog. This is my first try and it appears to have worked but the picture quality is poor. I will continue to try to post- so bear with me as I might have a bunch of random posts to try to perfect this process-- by the way it is totally cool!! You can post from your phone.

Really??? Spina Bifida????

While I watched Finley prance around the park carelessly jumping off the side of play equipment or swinging on the monkey bars to other parents gasping as she did her next daring jump, I pondered the fact that this little girl has absolutely no limitations due to her Spina Bifida. She is a monkey in every way and takes pleasure in watching us all white knuckle it as she leaps from one play apparatus to the next. Finley is truly an amazing child who defys the odds and is not at all what many of us would expect from a child with spina bifida. She has no limitations and even if she did have physical limitations I doubt she would let them hold her back. She is a tough cookie who is a fighter in ever way!!!

I think Finley gets a lot of her daring personality from just having that personality but I do think having Mia as her sister helps. Mia has no fear and does things with her little body that is way beyond her years. Having Mia as an older sister model helps push Finley to push the envelope.

Yes she drops from this and it is much higher than it looks in the picture.



She also jumps off the side of the slide -- the taller ones too. She freaks out all the parents as they watch-- I love it because they are looking for her parents to stop her and they have no idea I am mom because I am not Asian and then after her trick I cheer and clap and people look at us with confusion. I get such a kick out of that!

A visit from our Shenyang guide-- MAGGIE!!!!!

We were so excited to get an email from Maggie, our guide in Shanyang from Finley's adoption, who was in Los Angeles on business. We were so thankful to have the opportunity to meet up with Maggie and hurried home from our beach vacation to take her and her friend out to dinner. Maggie is an amazing woman who was pivotal in helping us communicate with Ms. Wang at Finley's orphanage. She is the one who put us in contact and did a lot of the translation and really set us up to have so much communication before we got Finley. She has been so generous with her time and visits Finley's orphanage often and even brought gifts for all of us from Ms. Wang. She also brought adorable panda backpack's for the girls as a gift. It was a wonderful night and I am so thankful for the opportunity to get to meet with her and her friend. She is just an amazing person I feel privileged to know!

We went to Northwoods Inn which is very "American" with steaks and all kinds of old west type cuisine. The boys had already arranged a sleep over with friends so they were unable to come to dinner. The girls have a bunch of clippies in their hair that Ms. Wang sent with Maggie as gifts.

Maggie putting the clips in Finley's hair-- too cute!



All the girls!!! The girls loved Maggie and quickly warmed up to her. Mia said that Maggie was a pretty Chinese grown up and she wants to be pretty like Maggie someday. I thought that was so cute!

So cute!!

Maggie and I

The whole gang

We had such a great time with Maggie and were so thankful to have the opportunity to meet with her. Hopefully on future visits to the US, we can meet up again-- maybe have a Fushun Orphanage West Coast Reunion!!!!

Doheney Beach, Dana Point, CA!!!!

We had a wonderful camping vacation to Doheney Beach this past week. We were able to join a wonderful group from the boys hockey team and a bunch of their friends when they had a cancellation. Doheney takes reservations exactly 6 months in advance and books up for the year in about 2 minutes online. Therefore, to be offered a camping spot for a week is an opportunity you MUST TAKE!!!! So we did and they even had one more cancellation that our friends were able to take at the last minute. All in all, we had a wonderful and relaxing vacation!!

The pictures were all on my little old point and shoot so they are not great but it's all I have.

Mia playing in the hole Kevin made. Give the kids a hole in the sand and they are happy for hours!

Finley playing in the sand



Mia dancing on the shore-- she is so funny-- she is dancing, singing or tumbling CONSTANTLY!!!!

Owen surfing. Doheney is a surf beach so there were TONS of surfers everywhere!

Owen and his board-- by the way, you will notice very few pictures of the boys. They were off running wild with their friends the WHOLE time so it was rare I was able to get a picture of them.

Girls about to dig a hole

Sand--gotta love it

Playing with daddy

Such awesome legs- I only wish.....

Mia doing a cartwheel

About to do the splits

Love the smile :)

Love that smile-- so darn cute!!!!

That one too--- so cute!

Finley is a good sand digger

Relaxing on the beach

Throwing Cheese balls at the seagulls

Ummm.... Pole dancing?????

Some posed pics but still cute

Silly girls

Posers :)

My beautiful girls!!!

Sugar cones with rainbow sherbet...... awe...summer....

Mia is particularly a fan

Mia riding her scooter-- at the camp ground this activity is very popular

Finley on her big wheel--thing-- it's a razor brand and the back spins around-- its called 360 or something like that.

Riding the campground

One of the only pictures of Ethan from the weekend-- he is way too cool now-- ya right!!!

Eating with Jenna (our friends daughter)

And the boys- with Jack and Dane

Steve and Janine and Kev-- I was so happy-- not one picture of me the whole time--yipeee-- just what I want - a picture of me in a bathing suit-- NO WAY!!!!

We had a blast!!!!