Kai is such an amazing little trooper! We have had a really busy last four days. Memorial Day weekend in Bellingham is the weekend of our big local civic celebration, The Ski to Sea Race. Cam and Ben both marched with their high school band so we took Kai to watch them. We had taken him to see the Junior Ski to Sea parade the weekend before so he had an idea of what to expect. He loves parades. Loves to wave at everyone, and shake hands with the clowns, Shriners, etc. Had a great time. And best of all Cam and Ben’s band took first place in their division, beating out the other two city high school bands as well as a number of others.
We had even stopped on our way there to get him a last minute haircut. Haircuts have not been a favorite activity for him, and from the look of the cut he had back at the S.W.I. I think I can understand why. But he seems to have gotten over that and didn’t mind it at all this time.
On Sunday we went south for the annual party at our friends Kim and Alex’s. The weather was not so great, but we had a great time anyway. There were quite a few people there and it gets pretty loud. Kai fell right into the mix and had a great time. He enjoyed watching the horseshoe tournament, and getting to sit on Alex’s Harley.

Alex always has lots of toys. This is a picture of Kai and his cousin Devon watching Alex launch a little glider-plane from a bunch of helium balloons…

Monday was a quieter day of working around the house and lawn. It was good that it was a bit quieter, because Tuesday was not the day we returned to our regular routine.

No, Tuesday was the day we returned to Children’s Hospital for Kai’s hand surgery. To keep things in perspective, this was not a major surgery. All we were having done was the removal of his “floating thumb” from his left hand.

We probably could have had our local G.P. do it, but Dr. Hanel was glad to do it, and Kai was able to have a general anesthetic. We thought this would make it less traumatic for him, though we realized it would add an additional complexity to the procedure. We had set the appointment months ago, but had been wavering as to whether or not we were going to go through with it. His little thumb nubbin doesn’t pose a direct problem, but it does get in the way, and draws attention to his hand. We talked about putting it off, but in the end decided it was best to get it over with.

Our day began at 4:20 A.M. when our alarm went off. Tina and I snuck out of bed and got dressed while Kai slept. We quietly snuck some coffee and toast, feeling a little guilty, as Kai would not be able to eat until much later when he came out of the anesthesia. We had everything ready to go and the car warming up before we woke him. As usual, the first thing he asked for upon waking was breakfast. “Yup,” I told him, “We’ll eat in a minute.” This was going to be a very long minute. We changed his diaper, put shoes on him and loaded him directly into the car. This distracted him from his request and he probably wasn’t really ready to eat anyway, as it was only 5:00 A.M.

It was a beautiful morning; perfectly clear and the traffic was light. We stopped in Marysville (about an hour south) to pick up my mom, and then headed on to Seattle. On our last trip down the traffic had been really bad and we were late getting to Children’s, so we had left extra early this morning. Today the traffic was as nice as the weather and we made excellent time. We hit our exit at 7:00 A.M. and made every light on the way to the hospital. This sounds great, but it meant we had over an hour to kill before it was time to check in and we still couldn’t give Kai that breakfast we had promised him “in just a minute.”

We went ahead and checked in and sat in the reception area. This part of the hospital had just been redone and is absolutely gorgeous. Each part of the hospital has a different theme: airplanes, space, farm, etc. This area is called the “Whale Entrance” and is beautifully decorated.







Kai loves whales and was very taken by all the imagery. As it turned out we didn’t have to wait that long. The family scheduled ahead of us was driving over from Yakima and had called to say they were lost. Our early arrival meant we could switch places with them; we got in early and they didn’t lose their appointment.

The check-in receptionist noticed Kai’s fondness of Mouse and asked if he would be accompanying Kai into surgery. We thought that was a good idea so Mouse got a wristband too.

In the prep room Kai willingly let us undress him and put the tiny hospital gown on him.

The first time we met Dr. Hanel Kai was very upset when we had to undress him to be examined. After we met with nurse-practitioner and the anesthesiologist they brought in a dose of “goofy juice” for Kai. This was the first relaxing drug to prep him for the surgery. He wasn’t too happy about being given this, but didn’t fuss too much. Within minutes he started getting pretty slack, and before too long he began singing loudly to Mouse. I didn’t recognize the song, but it was reminiscent of :
“Show me the way to go home
I'm tired and I want to go to bed
I had a little drink about an hour ago
And it went right to my head”

The anesthesiologist returned and we put Kai into her arms. He was totally slack at this point and gave no resistance. This was really a very minor procedure, but entrusting your child to others this way is very, very hard. General anesthetics can have side affects, and this was his tiny, little hand they were going to be cutting on.

The procedure was to last only half an hour and they had given us pager to let us know when Dr. Hanel was finished. We went up to the cafeteria to eat something while we waited. Just as we were finishing our meal the pager went off. We raced back to the recovery room and in a few minutes the doctor came in to talk to us. The procedure went smoothly and Kai was sleeping. They would bring him in to us as soon as he started to wake. It took about an hour and they brought him back in on a little tiny gurney. His eyes were open and he was starting to come around. We were worried about how the anesthesia might affect him, would he be nauseous, irritated, panicky? Nope, he came out of it easily, had some water and even tried a popsicle. I think he still was a bit wonky as he normally won’t touch anything that sweet.

We got him dressed, checked out, and drove back to my mom’s for lunch. By the time we got there Kai was pretty much himself again and made himself at home in Gramma’s toy closet.

The whole process was much harder on us than it was on him, which is how it should be, and why we took him to Children’s for the procedure. When we got home he was up and going. He played in the backyard watering everything in sight, and working his earth moving equipment.





We have kept him on Tylenol with codeine to make sure he doesn’t have any pain, but apart from the annoyance of the bandage, he doesn’t seem to know he had surgery today. We are very proud of how well he handled it all and are continuously amazed at his resilience and positive attitude.

On Tuesday we went to Children’s Hospital in Seattle for Hui-Hui’s second consult with Dr. Hanel. “We” are me, Tina, Hui-Hui and my Mom, Evalyn (NaiNai). Hui-Hui went because it’s his hand that Dr. Hanel is interested in. Tina and I went because we are his parents and want to make sure that he receives the best care possible. NaiNai went because she is the expert and wanted to hear for herself exactly what Dr. Hanel had to say. She knows better than to trust Hui-Hui’s care to rank amateurs like Tina and me.

Evalyn has been visiting us for the last couple days, which has been great! And really, I can’t imagine going to “Children’s” without her. Mom has been very involved with the care my nephew Devon has received there and knows her way around the place. Having her with us for these trips down there have made the process much easier.

On our last visit Dr. Hanel refrained from giving us any clear directive as to what we should do, which left us a bit perplexed. When we started this process, over a year ago, we assumed Hui-Hui’s hand would require some kind of corrective surgery. So when he told us that with Hui-Hui’s condition there was no clear directive and it was up to us, we were left with a perplexing situation. We had sort of assumed Dr. Hanel would present us with a clear course of action. Suddenly we were adrift. What should we do?

To clarify, only his left hand is affected. He has what is called “radial club hand”. His forearm is quite short, the radius more than the ulna, and he has no thumb. His index and middle fingers are also affected as they are somewhat fixed and don’t flex properly.

He has what I have been inappropriately calling “a funny hand”. But since he has been in our lives I have come to love that funny little hand. And it really doesn’t slow him down much. Somebody asked me once if he was right-handed. Um, yeah. He’s VERY right handed. But he uses “Little Lefty” quite well.

So on our last visit Dr. Hanel said we could really go either way. He told us to go home and think about it. He had an O.T. make a splint for him to sleep in to help stretch tendons in case we decided on surgery and told us to come back in March.

So we went home and tried splinting his hand at night. We were wimps, and when he fussed we took the splint off. It’s in mint condition.

We read up on radial club hand and pollicization surgery. We joined forums like limbdifferences.org, helpinghandsgroup.org, reach.org.uk. The more we learned, the more we wondered if surgery was the right thing. We talked with my sister about their experiences with my nephew Devon who has arthrogryposis and has had a series of surgeries at Children’s Hospital.

We decided to ask Dr. Hanel directly, what he would do if this were his child.

Now the blow-by blow:
It was a two-hour drive down. We thought it wouldn’t take this long as we would miss rush hour – WRONG. We got there late and it took forever to get checked in. Fortunately Mom had Tina go up to the orthopedic office and tell them we were here or we would have missed our appointment. We finally went up and waited in the second waiting room. Tuesday is “Hand Day” so we saw lots of other funny hands and little tiny kids in casts waiting with us. Finally they called us back. Hui-Hui was not excited to see Dr. Hanel, but he had nothing to worry about. Dr. Hanel’s bedside manner is excellent. He quickly put us at ease and commented on how much Hui-Hui had grown. He wanted to get a look at Hui-Hui’s elbow and with a little persuasion Hui-Hui gave him a quick glance.

Dr. Hanel then told us that in his job he often has to tell parents that a specific course of action or surgery is absolutely necessary and to not have it done would be negligent. Other times there is nothing that can be done. Then again, there are times like with our family where it could really go either way and all he can do is say what he would do if this were his child. Then he told us he would leave Hui-Hui’s hand the way it was. He sited a study of children with similar conditions that found children who had surgery actually fared somewhat worse as to functionality. If both of Hui-Hui’s hands were affected surgery would be a clear choice, but as he is affected unilaterally it’s just not going to help him that much.

We were very relieved to hear this. While I wish there was a way to make his hand perfect that is not the case. He has a funny hand. Surgery could rearrange it, but he would still have a funny hand. It would be different than it is now, but it wouldn’t be like his right hand. And since his right hand is perfectly fine, he’s going to always favor it. He already has a number of strategies for using his left hand and if we surgically rearrange things on him it will likely disrupt his present functionality.

Dr. Hanel told us he didn’t even recommend O.T. He said everything Hui-Hui’s doing right now is O.T. He told us to take him home and let him be a kid. Keep feeding him and loving him. This all sounded like a great plan to us!

It seemed like a great plan to Hui-Hui too! He was very pleased to get out of the exam room without being strip-searched or injected with any antigens. He swaggered back down the hallway to look at the fish again before we left, and then we went out for Chinese food.






We had a great lunch at China Village, just down the hill from Children’s, which I highly recommend. It’s a great place for lunch and they have food Hui-Hui will eat: soup and rice! If you give them 24-hour notice they can even prepare Peking duck for you.


Our trip ended with a small drama. When we left the restaurant and got in the car to head home we discovered Stinky Mouse had gone missing! We searched the car - no mouse. We double-checked the table we sat at in the restaurant - no mouse. WE LEFT HIM AT THE HOSPITAL!!! Fortunately we were just down the street. We drove back and Tina ran in to check with the ortho clinic to see if they'd found a stuffed mouse...
THEY HAD HIM! Life is good!!!

On Tuesday we went to Children's Hospital in Seattle. Our appointment was at 8:00 in the morning. MapQuest says it should take an hour and 33 minutes to get from our house to Children's Hospital. We left our house at 5:30 AM and barely made it. I do not envy Seattle commuters! We stopped in Marysville on our way to pick up my mom. She has been very involved in the care our nephew Devon has received at Children's Hospital so it was nice to have her along. We didn't have to think about driving directions or parking, etc.; made the trip MUCH easer.

This was a preliminary visit with Dr. Hanel to discuss Hui-Hui's hand. A physician's assistant gave Hui-Hui a general exam, which he was NOT happy about. He was quite distressed over being undressed in a clinical setting, but he calmed down by the time Dr. Hanel came in to see him.

I really liked Dr. Hanel. He has a calm, present, and gentle manner. He looked at Hui-Hui's hand and explained that we had a couple of options:
1) Do Nothing
2) Surgery

Before we went in, I was worried the doctor would immediately advocate for surgery, and as the physician's assistant looked at Hui-Hui, she said that he would probably want to straighten the wrist and build a thumb out of his forefinger. She said this as though it were a forgone conclusion. But When Dr. Hanel looked at him, he said it wasn't that obvious of a choice. If both of his hands were affected it would be a much more simple decision to want to create an opposable thumb. In that Hui-Hui's right hand is normal the need isn't as clear. Dr. Hanel also told us about a recent study of children who have had the procedure and ones who have not, and that the effect on functionality wasn't especially clear. For Hui-Hui, the decision to have this done is also complicated because his index finger doesn't flex properly, and the "quality" of this finger
effects the success of the operation.

The procedure of building a thumb out of a forefinger is called "pollicization". There is a good newspaper article which profiles Dr. Hanel and explains the procedure you can read HERE.

So we left the visit with an appointment to return in three months to discuss it again. Dr. Hanel asked us to think about what we want to do, but he did not give us a clear recommendation, as it's not a clear-cut case. He did have an OT come in and make a splint for Hui-Hui to wear on his hand at night. The splint holds his hand in an extended position to help stretch tendons and soft tissue. This will make surgery easier if we decide to go that route. Hui-Hui did not like getting the splint made. It wasn't really invasive, but the whole process was overwhelming for him. While we waited for the splint to be finished Gramma took Hui-Hui out of the exam room for a little walk around the hallways. This was very sweet, as it let her have an opportunity to connect with her new grandson, she was able to be there for him as a source of comfort in a stressful situation. Tina and I finished up with the OT then went to catch up with Hui-Hui and Gramma out in the lobby where they had gone to look at the fish tank. As we headed down the hall we could hear my Mom talking with someone and we saw a little asian girl standing in the lobby. It was Aimee Oppliger! We met Aimee's parents in Beijing, and Aimee in Guangzhou. They live near my sister outside of Marysville and adopted Aimee through our agency, CHI. Aimee was very interested in seeing Hui-Hui again, though Hui-Hui wasn't feeling very social after all he'd been through in the exam room. Aimee has fused fingers and was seeing Dr. Hanel as well. We were all just stunned that we had appointments on the very same morning!

Afterwards we went to Gramma's house for lunch. This was our first one-on-one visit with Gramma, and Hui-Hui really had a chance to connect with her.

Yes, that's Dori in the fish tank, Nemo was in there too.

Hui-Hui and Aimee meet again

Us with the Oppligers

At Gramma's House