My Heart

This little boy is my heart, my love

I was certain there was a God the moment that I laid eyes on him

He has brought meaning into my life

He has challenged me to become a better person

He has taught me unconditional love beyond anything I could have ever dreamed

I understand how God loves each and every one of us because of him


There has been an Elvis Sighting!

 After spending last week with me, Dan must of thought that I was sitting around and eating too many Bon Bon's because on Saturday he went out and bought a dog, which we named Elvis.  (We actually discussed it and my only requirement was a dog that didn't shed.)

 Bei is ecstatic about his new dog!  He tells me 20 times a day how much he loves his dog. Kai didn't feel well all weekend and now that he is feeling better he has taken a more active interest in the dog.

Elvis is a Shitzu Bichon Cross.   He is the sweetest little guy.

He does have rebellious side and has taken up smoking when he thinks we are not looking. 

We were struggling what to name him, and our friend Big Kyle suggested Elvis and it stuck.  Big K is one of Bei's favorite people.  He is so awesome with both of the boys! 



All of us do it, regardless if we have a healthy or special needs kid, we all advocate for our child. If you would have asked me what advocating meant to me before I had Kai I really wouldn’t have had a very good answer. For Bei it has been simple; finding the best heart surgeon, and working with his pre-school teacher regarding his separation anxiety. It is pretty straight forward stuff. Advocating for Kai on the other hand has taken on a life of its own and has almost become a full time job. It means that I assemble the best possible team of professionals, so that Kai can meet his full potential. For him it includes everybody from his primary care doctor, ENT doctor, speech therapist, occupational therapist, physical therapist, audiologist, neurologist, geneticist, dentist, school district, insurance company, billing companies and even his pharmacist. My job then becomes to assess their ability and their outcomes. Are they working towards getting the best care for Kai? Are they meeting his needs? Are they following up with the care they committed to? If not, I need to move on and find better care. I have pushed back on doctors and told them they are not meeting my expectations. I have laid out expectations and said you need to meet these or I need to find a new doctor. It is time consuming to move to new doctors or therapist so I want to resolve issues through communication if I can. Sometimes I "fire" them by moving onto the next doctor or therapist.   I feel like I have witnessed everything from apathy to disrespect to going above and beyond the call of duty.     Having a special needs patient can be time-consuming I get that.  My job is to find those professionals that are willing to put in the time and effort to ensure my child get the best care possible.   

I will give you an example of poor care and good care; our claim for speech therapy has been denied by our insurance company. Now this is a little boy that is non-verbal at 2.5 years old, is diagnosed as severely hearing impaired in both ears and we can’t get him speech therapy. I call the insurance company and they tell me if I jump through rings of fire, swim with the sharks and then click my heels three times I may get it approved. Which in real people speak means that I need to get my primary care doctor involved and the speech therapy billing personnel involved in the process. So fast forward and nobody follows through and does the correct paper work and they tell you it is sent and the insurance company tells you they never received it and then the speech people say okay I will send it this week and your primary care doctor never returns your multiple phone calls inquiring about where his paperwork is for the insurance company. True scenario and Kai is still being denied for speech therapy.   Thank you all for your incompetency...

Now let me tell you a positive story, one where the people involved have continually gone above and beyond my expectations for care for Kai.   His ENT doctor wants to do a CT scan of Kai’s head to see if they can determine the cause of his hearing loss. When I initially went to the International Adoption Clinic with Kai one of the things that Doctor Judith E told me was that Kai should never have another CT scan in his life unless it is life or death. He already had three CT while in China and she was concerned about the radiation. So when the Ear doctor told me he wanted to do the CT scan I told him I had to think about it and I would get back to him. I immediately called Beth who is the nurse coordinator for Dr. Judith E at the International Adoption Clinic and told her the situation. She told me that Dr. Judith E was out of the country but I could expect a call in about two weeks if I could wait that long…I could. Two days later I got a call from Beth telling me that she had emailed Dr. E while she was on vacation in Taiwan about my concerns and proceeded to give me Dr. E’s response! Above and beyond! Beth is the same person that I called when Kai had a grand mal seizure at our primary care clinic and they told me to get to an Emergency Room immediately. I felt like they pushed me out the doors with this baby who was blue and hardly breathing.   My head was spinning, I didn't know where to go and felt like crying.  I decided to call Beth at the International Adoption Clinic and she told me to come to U of M and they would have me registered and I could walk right in. Both she and Dr. E came down and checked on Kai. Dr. E even did an overall physical even though there was an emergency doctor there too. Dr. E was also the one that believed me when I said Kai was having seizures and I showed the tape to her and she immediately called the neurologist who a week before just thought he was having fainting spells. When people treat your child with such respect and care like Beth and Dr. E it just warms your heart. To this day I can’t even think about Beth and Dr. E without getting misty eyed.   How can I ever thank them for all they have done for Kai?   They have made a huge difference in my little boy’s life by practicing medicine the way it should be practiced.

One last advocacy note, I switched audiologist and LOVE Kai’s new audiologist! She has a passion for children. She honestly is just busting in her enthusiasm to do what is right for Kai.  She called me at home to continue our conversation after we had just spent 1.5 hours together because she had more thoughts about Kai's care that she wanted to share with me.  ABOVE AND BEYOND!

By the way, Kai is not wearing his hearing aids until his new molds are in from his new audiologist.  His old molds didn't fit properly and were causing alot of feedback from the hearing aid. 



Happy Dan and his sister Julie!

The first few days following Dan's back surgery I wanted to stand at the nearest intersection with a sign that read HUSBAND FOR SALE!   My normally affable husband turned into a pitbull and anybody in his crosshair was raw meat.   Dan's back surgery was outpatient surgery, which I think is the stupidest idea in the world.   What happened to the good old days where everything was a 5 day stay at the hospital?  You are having a baby - 5 days at the hospital, you are getting your tonsils taken out - 5 day stay, you are having back surgery - 5 days stay at the hospital.  The good news is that it only took Dan 4 days to come around to his congenial self.    It is so nice to have Dan back to his happy self again.   I realized it was a testimony to what a happy home we normally live in because I really didn't know how to handle his ornery personality.   I could not be married to an unhappy grouch.   In summary Dan is on the road to recovery!  Thank you to all the well wishes that we received along with phone calls.   And special thanks to Cliff, Laura, Brian and Kyle who let me and the kids escape...oops, I mean visit with them, so Dan could get some rest. 


Back Surgery or Bikini Wax?

 Bei collected 9 buckets of rain water the other night with his dad

 Bei was racing the rivers of water that he scooped out.  He is coming back for another try.

 Kai joined in the fun too!

 I just imagine Kai yelling "Got it!"
 I loved the fact that I caught the cup mid air after he threw it

 Bei is really a fun kid to play with.  He is joyful and enthusiastic about most things that we do.

Kai has such a handsome little face.

Dan is having back surgery tomorrow and I am a little worried.  Here is a short conversation Dan and I had tonight about his surgery tomorrow.   I said to Dan   "Let's plan on staying ahead of the pain tomorrow.  If you are sleeping but your medicine calls for every four hours.  I will wake you up and give you your medicine."   Then  Dan said "I don't think there is going to be any pain.  The doctor didn't mention any thing about pain"    I calmly said  "They are putting a knife in your back and twisting it all about.    I think you are going to experience pain."   Dan looked at me and said "why do you have to talk like that?"   WHAT?  You mean realistically???   Uh oh...we might be in for a longer road here than I bargained for because I think Dan thinks he is going in for a bikini wax or something easy like that.  Prayers!  LOTS OF THEM!


Kai's Hearing Aids Update

Bei hasn't been feeling well this past week and fell asleep on his cousin Ellie's lap.   Ellie said her only regret in not going to the University of MN (she goes out of state) is that she misses the boys while she is away.  We are so lucky to have such wonderful family and friends that love our boys and truly care about them. 
Katherine has been able to spend some time with the boys this summer!   We all adore her because she is light hearted and always has a smile on her face.  She is incredibly kind to both boys.  Next summer she will be driving!  Yeah!  Hopefully we will see her even more often then!

Kai has had his hearing aids for 8 days.   I realize in these pictures he doesn't have them in.   Anyway, he wears them about 1.5 to 2 hours in the morning and then for about 2 hours after his nap.  For the most part he hasn't minded them in.   When I tell him that I am going to put them in he claps his hands.   He didn't fuss about them for the first week, but now he is pulling them out more often.   Several times he has come up to me, pulled my hand and slapped the hearing aids in them.   Like here! I am done with these! I appreciate that he doesn't just take them out and leave them.    Unfortunately from day one there has been alot of feedback or buzzing from the hearing aids.   It is indicative that the ear molds aren't fitting properly or there is a loose tube.  I drove back to Minneapolis on the second day for the audiologist to fix them, but they still have terrible feedback.   Next week I have an appointment with a different audiologist and hopefully she can help with the feedback noise.  

This is one of the flower gardens I actually like because it is small, close to the house and easy to take care of. 

When we purchased our home back in January of this year somebody mentioned something about the beautiful gardens.  My first thought was how big of a garden can it be.  Instead I should have asked HOW many gardens are there?   Off the top of my head I can count 7 flower gardens!  Who knew?  It was winter time.   Let me just say, I HATE gardening!  Or rather I should say I have never gardened and besides the fact that I have no time to garden, I have no desire to learn how to garden.   I enjoy looking at the beautiful flowers as much as the next person, but I really don't want to put any work into them.  Every time I get near the gardens to do what gardeners do (which I have no idea what that is) all I see are bee's and waspy looking things that are just waiting to sting me.  Okay, I admit I am a wimp!  I grew up on a farm but I'm still a wimp! I know I am suppose to be doing maintenance on them.  Praise the Heavens that it has been a rainy summer.  I am afraid to even think about how I am going to keep all these plants alive during a dry summer.   Sadly, my secret dream is that a huge tornado will come through and rip the soil up from one end of the gardens to the next.   Like an uprooted tree!  I will stand around looking at the destroyed gardens with my neighbors shaking my head along with them saying "what a shame and I was so looking forward to getting in to those gardens."   It is a pipe dream so instead my goal this year is to learn about Preen and Round Up.  What do they do?  How do they work?  When do I apply them, etc.  Who knows maybe in 5 years I will be considered a master garderner.    For now I am just a schmuck with two brown thumbs and 7 flower gardens. 


Is Dan Having a Baby?

My handsome husband Dan is really an amazing person!   You don't need to spend much time with him to realize that he is a happy, outgoing, all around nice guy.   I don't highlight him enough in my blog, but he is a great father and great husband.   Dan works long hours every day and then comes home and spends lots of time with the boys.   He is as crazy about the boys as I am.  

Unfortunately, for the past 3 weeks he has been in quite a deal of back pain.  He was trying to work through it by going to the Chiropractor once or twice a week, however it all came crashing down on Wednesday night.   He was assemblying a dresser Wednesday night when he came staggering out of the bedroom in excrutiating pain and barely made it to the kitchen table.   He was perspiring and turning gray and I could tell he was about ready to pass out.   I immediately called our doctors office and because it was after hours there was a phone service company that takes the call and then calls the on-call doctor.   I frantically explained Dan's conditions to her by saying "My husband is having excrutiating back pain, he is clammy and is about ready to lose consciousness"   Her response to me is "Is your call in reference to any OB/GYN issue?"   SERIOUSLY LADY!   I responded "I don't think my husband is going to give birth any time soon!"   She started laughing and said that it was in the script that she had to ask every patient that same question.  Good Lord, whoever developed the script for our medical facility should be fired.   Anyway, the bottom line is that Dan has a herniated disc with fragmentation.   He will be seeing an orthopedic surgeon on Wednesday of this week.   Thanks to good drugs and steroids he is able to remain relatively comfortable until we see the surgeon on Wednesday.   Please lift Dan up in prayer that his back is healed and that he can follow the most conservative treatment possible.

A special shout out to Kinnery, a Physical Therapist at the PT office in the Chicago area where my mom works.   She was kind enough to review Dan's MRI and explain in detail to the both of us what he has and possible treatment plans that the doctor may recommend.   Without her expertise we would have been left in the dark since our primary care doctor's performance has been less than stellar.  Since being immersed into the medical establishment with all of Kai's special needs I could easily write a blog on The Good, The Bad and The Ugly performance that I have experienced from the medical profession.  There are a few gems out there like Kinnery who goes above and beyond expectations.  Professionals like her are priceless when it comes to health concerns.   So thank you Kinnery!  Your time and effort is so appreciated by both Dan and I!


Answered Prayers

 Kai's new hearing aids molds are blue...easier to find when he chucks them across the room

 Once we got home a rock and roll band was formed and every noisy instrument was played at the same time...poor kid is probably overly stimulated, but honestly he loved it!

A dance party broke out around daddy the bear, you can see Kai is squealing with joy!

The hearing aid appointment could not have gone any better.    Kai took another auditory booth test which the audiologist commented about how visual he is looking around all the time.   She said it would be very easy to get false positives from him.   Then she put the hearing aids in him and he truly got that look of awe and wonder.   He didn't fuss and just left them in.   You could tell that he was trying to figure out what was going on but he liked it.   It made me weepy with tears of happiness for him.   I was so sorry that I didn't bring my camera to capture those first looks on his face.   Thank you to everybody that prayed, please continue because now I have to figure out how to get them in his ears each day.  And he is a rascal about getting them in.    He has a steep climb ahead of him to learning language but if anybody can do it, it is our little Kai Kai Sweetie Pie with the heart of a lion.  


Hearing Aids Day!

Bei and Chloe were best of buds all weekend!   She is one of the Suzhou Sweeties that was adopted with Bei.

 Can't wait to find out what this little guy has to say about life!  He is a very sweet little boy.

Cabin fun!

Our friends Matt and Beth who adopted Chloe from the same orphanage as Bei came for a visit at the cabin with 4 of their 5 kids.   We all had so much fun.   It was very special for us to watch the connection and friendship develop between Bei and Chloe.   Saturday Bei and Chloe were drawing pictures together, reading, dancing, holding hands and really seemed to form a close  friendship.   But kids are funny, Saturday night when I was tucking Bei into bed I said "Wow, you and Chloe are really good friends and really seem to have bonded."   He looked at me and said "Which one is Chloe?'   Only the one that you were practically making out with!   Just kidding, but you get my drift.

On a more serious note, I wanted to ask if you all will lift both Kai and myself up in prayer not only for tomorrow but for the next few weeks to months.   Tomorrow he gets his hearing aids.   I've talked with a couple of moms that have dealt with trying to keep hearing aids in a young child and to put it simply, it is challenging.    Kai wants to talk so bad.  He made the mmmmmm sound for the two hour ride back from the cabin.  I want him to have a language, a way to communicate other than gesturing and me guessing.   Life is going to get alot more frustrating for him if he doesn't gain a language soon.   Anyway, tomorrow is a beginning for him and hopefully it will go smoothly along with his transition into the hearing world with his aids.   God Bless that little boy and all that he has brought into our world.   I just love him with all my heart!