Second Opinion

Today we took Weilong to another neurosurgeon for a second opinion concerning his Chiari Malformation.

The second doctor agreed with the first doctor. Both urge us to have decompression surgery as soon as possible. Weilong's syrinx is extremely large, the doctor said Weilong has a "screamin syrinx". It is very "fat" and has even invaded the brainstem a little bit.

We have prayed about this ever since we found out about the CM. Before today's appointment we had decided that if the doctor agreed that surgery is necessary, we would go ahead and schedule it.

So, tomorrow I will call and schedule Weilong' surgery. We will try to schedule it for the week after the July 4th holiday.

One of the passages in our Pastor's sermon Sunday keeps going over and over in my spirit. It is from 2nd Chronicles chapter 20:

"For we have no power against this great multitude that is coming against us; nor do we know what to do, but our eyes are upon You.”

Sometimes it feels like the whole world is arrayed against you. And fear threatens to overwhelm you. But, our eyes are firmly focused on the Lord. Believe me that doesn't mean that my emotions are not overwhelming at times, or that I am not shaking in my boots several times a day. But it does mean that I KNOW whatever happens to us on this earth, our God is in control and He loves us. Especially He loves little children like Weilong. I believe that Weilong will come through all this with flying colors and that he will lead a long healthy and very active life. He will always be surrounded by the love of God and the love of his family.

Happy Birthday, Lisa

It's hard for me to believe that Lisa is 13 yrs old now. It seems like she should be much younger. She's such a sweet young lady. But I still see traces of that fiery little foot-stomper from Changzhou sometimes!

I made her favorite chocolate cake for her. She is starting to be very interested in domestic things like cooking and sewing. Lisa loves to design clothes. She has notebooks with pictures of her elegant designs.

Lisa is also a voracious reader. And she does very well in school, all subjects. She declares she doesn't like math, but she still does very well in math.

If you wonder why all the kids hair is wet in the pictures it's because they had just come in from a swim. So of course their hair is wet! Swimming is their favorite activity in summer.

Summer evening

Watoto Children's Choir

The Watoto Children's Choir held a concert at our church Wednesday. And we were blessed to host several choir members overnight. We just fell in love with these sweet little children. It was hard to see them leave this morning. Here's a link to their website: http://www.watoto.com/

Hannah

I love my precious little grand daughter, Hannah. Here is a picture of her with her crown. She likes to come over and play with the kids, especially when they all go swimming.

vbs

Just a few pictures of the kids at backyard vbs.

Weilong Update

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Last week as Weilong and I were driving home from one of our numerous medical appointments Weilong shared his plans for the future with me. I did not ask him, I don't know why he decided to talk about it.

He wants to grow up and be a doctor so he can help other children who have problems like he does. My heart was touched by this revelation from my sweet boy.

Then he told me his plans for me and Gary. He said he (along with the other children) are going to take care of us. He promised me all my days would be filled with nothing buy joy. In his words, "You won't have to do anything mom, no cooking or cleaning or driving. I'll drive you anywhere you want to go. And all us kids will cook for you, whatever you want to eat. You can just read, watch tv, play video games, swim, eat and sleep. When you want to go somewhere, just tell me. I'll take you where you want to go. If you want to go shopping, just tell me, Mom."

You know I just had to ask him what if I wanted to go somewhere when he was at work? He promised me that one of the other children would be happy to fill in for him. And he promised me any kind of car I wanted too. And any house I wanted. Nothing is too good for Weilong's momma.

Have you ever heard of anything so sweet in your life? What did I ever do to deserve such sweet children?

Please, God, take care of my precious little boy. I want his life to be long, joyful, healthy and happy. He has already suffered so much in his few short years.

Last week we had our appointment with the neurosurgeon. He recommended surgery as soon as possible. We have an appointment on 6/25 for a second opinion. This is the earliest appointment I could get.

When the neurosurgeon told me Weilong must have decompression surgery, I couldn't help it, silent tears just flowed. I refused to make a crying sound, but I couldn't stop the tears. Weilong was quick to notice them. He shook his fist in the doctor's face and demanded that he leave his mamma alone. He told the doctor he is a bad man. It took a few minutes for me to convince Weilong that I was ok.

When we go to the car, Weilong began questioning me. He said he knew the doctor told me something bad about him. I told him that I was just sad because the doctor told me he needs surgery on the back of his little head. I told him that this would relieve the pain he has in his legs, arms, and head, that it would relieve his nausea, and that we could then give him medicine to help him grow.

He asked me if he is going to die. I told him no. He asked it would hurt. I told him that he would be asleep while they fixed his head, but that it would hurt some when he wakes up. He seemed relieved. He aid "It's ok, Mamma, I'll be ok".

So, several times over the last week, Weilong has caught me crying a little, or just looking sad. It is the strangest thing to have him put his tiny arms around me and assure me he will be ok. I'm ashamed of myself for not being stronger, and I determine in my heart each time to be strong for him. But honestly, I don't know how we can sign the papers to let someone operate on his precious little head.

Last week Weilong had a 4 hour hormone stimulation test. They told us he would only get one "stick". Then all the meds and blood draws would be done through this one port. Weilong bravely stuck out his little arm and let them stick him. Unfortunately, his little vein "blew" twice so they had to stick him 3 times. He was furious. He told them "You lie", "You no good". But he obediently held out his little skinny arms and let them stick him until they got a good vein. However, he refused to speak to any of us for the whole time. After about 3 hrs he fell asleep. I took that opportunity to go to medical records in the basement of the hospital to get a copy of the ct scan done the week before. When I returned Weilong was crying. His little legs were hurting so badly. An agonizing half hour followed, with me rubbing his legs and trying to comfort him. As soon as the last tube of blood was drawn we gave him tylenol. He fell asleep on the way home. He only woke up long enough to eat a small bowl of soup (he had to be fasting for the test), and then slept on the couch again for several hours. When he woke up he was his normal sweet self again, thank God.

I have started sleeping with Weilong. I have two reasons for this. First, he has told me several times that his head, legs, and arms hurt him so badly he is unable to sleep. And for some strange reason he refuses to come into my room and wake me up so I can give him medicine. Secondly, he is having trouble swallowing and I can hear him struggling to swallow while he is asleep. I want to be very near him at night if he needs me.

I find myself thinking about Weilong's birth parents, wishing they were here so I could talk with them about things. I know they loved Weilong very much from the stories he tells me about them. Loosing them was very hard for our sweet boy. He still grieves for them.

So, that's my update. Sometimes I am full of faith, and I know God holds us all in his hands and he will take care of Weilong. Sometimes I am so afraid for my son that I cannot sleep. And always I feel so blessed to have these sweet children to share my life with.

Happy Birthday, Weifu

Today was Weifu's 9th birthday, his first as our son. He is growing so fast it makes my head swim.

He had a good day. We started off with a trip to Toys R Us where he choose a little remote control boat for his birthday gift. Then I took all the kids to Pei Wei for lunch. Next, our oldest son took all 4 kids to see Shrek III. Then it was time for the birthday cake. Weifu choose this cake himself. It is beautiful and so delicious. We have shared it with nearly everyone we know because it is so large. I let all the kids stay up as late as they wanted, after all tomorrow is Saturday and school has been out for a week.

Hard to believe the boys' first school year has already passed.