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.

Thoughts on bonding -Julia

Oh, my goodness, I don't even know where to begin with this one. I fell in love with Julia's referral picture. I just couldn't wait to get her into my arms. She was 24 months old when we first met her.

Here's a copy of the referral picture. For six weeks while we waited to travel, I would sit and gaze at it, and let me tell you I loved her completely before we ever met her.

Love and bonding are not the same thing in my opinion. I say this because I loved each of my children before I ever met them, both birth and adopted.

My first glimpse of Julia was at the Jinfeng Hotel. Gary and I were haunting the hallway by the elevator because we had been told to wait in our rooms for the babies to arrive. I was so anxious. The day I had dreamed of and anticipated for well over a year was finally here. I was going to meet my precious little girl I had paced the floor of our room and applied my makeup several times and just couldn't sit still any longer. So now we paced the hallway.

The elevator stopped, and four aunties stepped off with four precious little 2 yr old babies. They were all beautiful. They were very very small for 2 yr olds. I felt shaky and trembly. And my voice was shaky as I rushed up to the aunties and said Julia's Chinese name "Jiang Yong Ju??" They smiled and pointed to my precious baby. Tears came to my eyes and I saw her for the first time. She looked like she had just woke up from a nap, her little cheeks were very rosey. And she was shy, not looking at me but keeping her little eyes down. The aunties all went to our translator's room with the babies, each family would be called in to meet their daughter, one at a time.

I will never forget that first meeting. The auntie placed little Jiang Yong Ju into my arms, and the orphanage director told her to love us and told us to love her. I couldn't help hugging her close and giving her a little squeeze and kiss. She looked like she was going to cry and they told us to take her to our room. We gratefully took our precious little bundle to our room and the bonding process began, even though we didn't know it at the time.

Baby Julia was so shy and sweet. We loved her with all our hearts. She would look shyly up at us through her lowered eyelids. I think she could tell right away how much we loved her. She refused to go to the auntie later when she visited our room. Already she preferred us. She never cried or grieved that I could tell, but looking back I know that she was afraid. The amazing thing was that she trusted us, total strangers to take care of her.

Julia still took a bottle, but she was used to taking it in her crib, not being cuddled and fed. So, we never got the close cuddling and eye contact with her that we got with our birth children.

Still, the bonding happened. When she would awaken each morning and after each nap I would lift her out of her little crib and sit in my rocking chair and rock her. She would lie in my arms and we would gaze into each other's eyes and I would sing to her. I would tell her in both English and Chinese that I love her. I remember one day she reached up her little baby hands and patted my face and said softly "Wo ai ni", which means I love you.

We established a routine, and even though she was 2 yrs old I spoonfed her each morning and cuddled her on my lap. We both loved the close contact. Julia stayed near me all day every day. She played quietly nearby while I worked in the house. She even followed me to the bathroom. If I tried to go to the store and leave her with Gary, she cried. And leaving her with anyone else was impossible, she just didn't stop crying the whole time.

I realized we had bonded about 3 months after we got home with Julia. I took her to meet our extended families for the first time. And during the night she woke up, unable to breathe. I was so scared. She looked at me with terror in her little eyes, and I realized how much I loved her. She was trusting me to take care of her, and I would have done anything to help her. I woke up Gary's mom and we boiled some water and sat her over the steam to breathe it in. I thought she had the croup, it was a few years before I realized these episodes were asthma. As soon as the doctor's office opened that next morning I took her in.

During that first year, Julia learned to speak our language. She began to pick up our mannerisms. There was much openness and between us. We would make be looking directly into each others eyes as we taught her things, and as she told us her little experiences. There was no holding back on either side, we clearly belonged to each other. There way no difference between the way we felt about her and the way we felt about our birth children.

Now for my spiritual analogy. Adoption is a perfect picture of our relationship to God. When we accept Jesus, we are adopted into the family of God. Bonding, or identification, occurs when we are open to or completely honest with God, our father. And when we spend time with Him, letting him teach us His language and His ways. As we spend time with Him, in prayer and reading our Bible, we become more like him, just like our children become more like us as they spend time with us. God must love us exactly the same way we love our precious children. Isn't that an eye-opener?? It was for me.

My thoughts on bonding

Just thought I'd try to put into words a little of what I've learned about bonding. Having given birth twice and adopted 4 times, I think we may have experienced bonding in a couple of different ways.

Anyone who has adopted has surely heard a lot about this subject. I never even gave it a thought until we adopted our first precious little girl.

I think I understand what the experts are trying to say about eye contact. Thinking back about 30 yrs now, I realize that bonding (or identification) happened between me and my birth children while I was nursing them, as we gazed into each other's eyes. There is no experience to rival that close contact between parent and child. It is much more than a momentary eye contact. The feeding lasts for 15 to 30 minutes usually and the there is such a close feeling between parent and child. This experience is repeated over and over again over the following months. I don't believe bonding could occur properly with only one such episode. There is direct eye contact and openness and acceptance during this experience. And a deep feeling of love develops between parent and child. The bonding grows daily and the child learns to trust the parent to meet his needs.

I think I can compare this experience to a spiritual one. There is a bonding, or identification, that can occur between us as individuals and God. I will try to explain more about this in my future posts about bonding. I have learned a lot about our relationship to God through my children. I think that God loves us very much and teaches us about spiritual things through our everyday experiences. It is at times like this that I wish I could choose the right words to explain my thoughts and feelings.

I don't have any electronic pictures of my older kids to post here, wish I did. In the next posts I will try to talk about how bonding occurred with each of our adopted children. I wonder if anyone will bother to wade through these posts?

Spring Break

The kids are having a great time this week. Hannah decided to eat dirt one day and I had to take a picture of her. Hope her mom isn't too mad at this old granny.

We went to the park today. Weilong found a fishing pole and tried to catch some fish. Unfortunately he hooked a big one who jerked the pole out of his hands and swam away with it before I could get my camera out. Well, that's what Weilong said anyway.....