Growth Hormone

We had a growth hormone stimulation test done on Weilong this summer. It was not surprising to find out that he needs to take human growth hormone. His hgh level started out at .5 and never rose above 2.5. Normal is between 7 and 10, I think.

The endo will not prescribe gh until after the decompression surgery. He says that he is afraid of creating any more pressure in Weilong's little brain. But Weilong is taking levoxyl for thyroid hormone replacement. And I am thrilled to report that he has grown 3/4 of an inch since March when he started the levozyl. And he weighs 40 lbs now, nearly every time we weigh him. Sometimes he slips down to 39, but mostly it's 40. He is thrilled, jumping up and down and clapping when we measure him and he has grown a bit. His optimism and good spirits never fail.

I have read that some children grow up to 6 inches the first year they are on hgh!! Weilong is looking forward to growing more than anything.

Summer's End

Can you believe school starts next week? Where did the summer go? I've been so busy that I have neglected to even update this old blog.

Weilong's decompression surgery is scheduled for 10/8. Things didn't work out for us to have it this summer, and I must say that it will be a lot easier for me if the other children are in school. We have prayed about this so much, and I truly believe that this is God's timing for the surgery.

We have tried to keep Weilong quiet over the summer, his symptoms are much better when he doesn't play so rough or get over heated and tired. Swimming has been a wonderful way for the kids to get exercise safely.

Gary's dad is having some health problems that really concern us. He is staying with us for a while now. He had an accident early this summer, his riding lawn mower turned over on him! A few days later his leg kept giving under him and he was admitted to the hospital. They think he may have suffered a stroke. He seems to be disoriented, had balance problems which may be what is causing him to stumble and have trouble walking. He forget things and cannot remember things. He is having severe problems with his eyesight, has even been bumping into the walls and doors. I called his doctor long distance today because his glucose level is extremely high, and nothing seems to bring it down. The doctor is prescribing a different kind of insulin to be taken in addition to his regular insulin. I'm going to pick it up from the drug store shortly. I would give anything to have some medical training right now. I'm afraid I will do something that will cause him more harm, but I have written down the doctors directions and am following them to a "T".

We had a wonderful, but very brief visit from Lisa's friend Wenyi a few weeks ago. The were in Changzhou SWI together until Lisa was 7 and they will always love each other. Wenyi is like a sister to Lisa, when they get together it is like no time at all has passed.

Well, I must be off to the store, I'll just post this short update and hope to get time to post more soon. Maybe next week after school starts?

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.

CT

Tomorrow we meet with the neurosurgeon again to get the results of the CT scan. I tried to get a copy of the radiologist's report so that I can have an intelligent discussion with the neurosurgeon, but they would not give it to me, or even tell me what it says. I am not impressed by this at all.

I need a doctor who treats me like I have a little sense. I want to read the report and research the terms before meeting with the surgeon, and I strongly resent not being given access to it. I am going to say this to the doctor tomorrow. I do not want a doctor who plays God and doesn't let me have access to medical records. We should be a team working together for the good of Weilong, and I should have every scrap of information available in order to make such an important decision for my precious little boy.

So, I have used my blog to relay my frustration. But if a blog is to reflect real life, then we must blog our frustrations as well as our joys and triumphs.

Yesterday Weilong and I spent 4 hours at the hospital. Weilong had what they called a stim test. It involved giving Weilong certain "agents" that should stimulate the production of different hormones over a period of a few hours. Blood was drawn every 15 minutes.

This was the first time I had seen my sweet son get upset over something. There was supposed to be only one needle stick to insert the IV. But his poor little veins collapsed twice, so he ended up getting the IV 3 times. He was furious with them. He kept saying, "You no good, you lie". We tried to explain to him but he refused to understand. He sat quiet and still and let them stick him again, but he was angry. He stonily watched a video the whole time, refusing to acknowledge that we were in the room. I left for about 15 minutes to go the the med records and try to get the aforementioned radiologist report, and when I returned my sweet boy was crying. His little legs were hurting. He gets this leg pain frequently, we think it is caused by pressure on his little spinal cord.

I rubbed his little legs and had him get up and walk, but nothing helped. It absolutely broke my heart to have him cry, but there was nothing I could do. As soon as the last blood was drawn I gave him a tylenol and we got out as quickly as possible. He fell asleep in the car on the way home.

I fed him a bowl of chicken noodle soup and and he cuddled up on the couch and slept until I had to pick up the other children from school, about 2 hours. Poor little boy was whiney for about an hour, but soon settled down and played the rest of the evening.

The kids played in the sandbox and got sand everywhere! Everyone had to shower and wash their hair and all their clothes had to be thrown into the washing machine. But I didn't complain because it was so nice to see Weilong playing and back to his normal cheerful self.

One big problem I have right now is that I want to keep WL beside me all the time. It is hard to let him play knowing he should not get any blows to his head or back. Little boys are so rough. Weifu got mad at Weilong and gave him a good swift kick right in the back. I have a rule at my house, NO FIGHTING. I talked with Weifu about it and reminded him of the rule. He refused to say that he would not hit or kick Weilong again, even after I gave him a time out to think about it. So, I must admit I gave him 2 licks with my paddle. I really hate to use that stinkin paddle, and haven't resorted to it in several months. It is used for willful, deliberate, disobedience only. I think it served its purpose in this instance, both of us cried and Weifu promised he would not hit or kick the others again. I know he doesn't understand why Weilong is getting out of school and going places with Mom. He doesn't understand that this is not a fun time for Weilong, he only sees that Weilong is getting a lot of attention right now. The girls are big enough to understand, but Weifu is not.

I am praying for wisdom and guidance right now. Not only for Weilong's situation, but for all the kids. I want them to have a fun summer, and to love each other and care for each other.

Medical update

Tomorrow I am taking Weilong for a CT scan of his little head. We have had several MRI's in the last two weeks, and yesterday we visited a neurosurgeon.

They tell us Weilong has Chiari Malformation 1, and a Cervical Syrinx. His pituitary is also small and isn't producing hormones properly. Tomorrow's CT is scheduled because there may also be something wrong in the occipital area. We will get the results of the CT sometime next week. I'm unsure of the day because Weilong's growth hormone test conflicts with his appt with the neurosurgeon so I will have to reschedule something!

I started to get concerned about our precious little Weilong a couple of months after we got home. All the other children had gained weight and grown taller quickly, but despite all the good food I was giving Weilong he just wasn't growing.

He has complained "my tummy ouch" almost every day since we were in China, and he throws up a lot. At first I thought he was eating too much, or that the food was just different. But limiting his food didn't stop the nausea. So, we had him tested for allergies and parasites. Both negative. I took Weilong back to the pediatrician several times over the following months just to document his lack of growth. We did a bone age xray and Weilong's bone age is 4 yrs 6 months. He is 8 yrs old.

Other physical symptoms we noticed were aching arms and legs, and headaches. Also, Weilong is not able to stand on just one foot, he cannot keep his balance.

The next step was a visit to the pediatric endocrinologist. We tested Weilong for chromosomal abnormalities and that was negative. Blood tests revealed his thyroid and growth hormones were very low. The doctor suspected a pituitary problem, so he ordered the first MRI. He also started Weilong on thyroid hormone and cortef.

The pituitary MRI showed that Weilong has CM1. So the next week we had a total spinal MRI. That is when the syrinx was found.

Reading back over this post, it seems so calm and unemotional. For the record, that is not at all how I feel. I have a terrible ache inside that just won't go away. There is no medicine for this ache, and even crying doesn't make it go away. I have only one source of great comfort. That is my faith in God. I don't know what I would do without that. And sometimes I'm ashamed that even though I know our lives are all in God's hands, I still am afraid for my precious son.

But I know whom I have believed and am persuaded that He is able to keep that which I've committed unto Him against that day.

Testing

Weilong has been having some tests run at the hospital. I'll write more about it when it isn't so painful for me. Our precious little boy captures the hearts of people wherever he goes. We are so blessed to have him.

High Winds

They wind blew our fence down! Just straight-line winds, but mighty strong ones. We even lost power for a little while. But all is well, the fence has been repaired and everything is calm now. Note that the cats didn't even bat an eye.

Pictures

Ever tried to get four kids to sit still and smile for the camera??

Hair Cuts

Look at those summer cuts!

Bluebonnets

These pictures were taken at the end of our street. The best of the bluebonnet season passed before I got pictures, so I grabbed these today.

Just things.....

Today was my birthday. I had a wonderful day. I got to sleep late and didn't have to cook a single meal. That is very unusual.

All the kids wrote me little notes and drew me pictures. I got big hugs and kisses from each one, well several times throughout the day.

And Gary took us all out for supper. I had all 6 of my kids, plus my son-in-law and little granddaughter Hannah. Who could ask for more?

It was chilly here today, but we all put on jackets and I went outside with the kids. I talked with my neighbors as we watched the kids riding bikes and playing. The yard was full of people. We didn't go in until dark. Then all the kids got their baths and by then it was bedtime for them. I got another round of hugs and kisses and happy birthday wishes as they went off to their room. All clean and soapy smelling and sleepy-eyed. Could anything be sweeter?

Now I'm enjoying a quiet time all by myself before I go to bed. Wish I had thought to take some pictures. Well, maybe I'll get some tomorrow. The girls are growing up so fast. Lisa will be 13 this summer. Hard to believe how quickly the time has passed.

Only one sad note. This is my first birthday without Gary's mom. She called me every birthday morning for over over 30 yrs.

Every year on my birthday I remember the year after my grandfather passed away. The phone rang and when I answered it I heard my grandmother and daddy singing happy birthday to me. They are both in Heaven now, and I can't wait to see them again.

Do we always remember our loved ones on special days? It brings a touch of sadness to a joyous occasion. My poor little Weilong. It must be hard to loose both your parents so young. It really comforts me when I'm a little sad to have my arms full of these loving children. They make life worth living.

Enjoying Pictures of China

The boys really appreciate getting pictures of themselves and friends in China. What a wonderful time they have telling us all about each one.