We're Home!!!

Weilong is doing so well. I don't know why this surprises me, I knew God would take care of him all along, but I had heard so many bad things and things that could go wrong. Then there's that terrible talk and piece of paper you must sign telling you all the risks. After signing that on Friday, I couldn't do anything but cry all weekend. And I must tell you all that I took a little help in the form of a pill on Monday morning. I just had to have something to calm my nerves. I couldn't let Weilong see me with tears streaming down my face as they wheeled him away.

We undoubtedly have the most wonderful church family in the world. Many of them came up to the hospital and stayed with us through the whole thing. I didn't realize what a comfort this would be. My natural tendency is not to want anyone around when I'm upset or emotional. But having those people there was absolutely the best thing that could have happened. I know that they love us, they have been praying for Weilong since long before we even got home from China with him. And I don't even care if they see me cry anymore, so there!

Weilong was in some pain yesterday, but he kept wanting to see his brother and sisters. And he wanted me to bring him something to eat. So, Gary stayed with him for the whole afternoon. I came home, slept a couple of hours, then brought the kids and Chinese take-away to the hospital. They had taken Weilong out of PICU and put him into a regular room about 5pm. Well, you should have seen him light up when he saw the kids. He had to hug each of them, and show them his scar and his iv needles, and tell them all about everything.

He got out of bed and walked down the hall with them. And then he made them all sit on his bed and they played UNO. It was touching to see the love these 4 kids shared. Gary and I just sat looking at them and smiling, knowing Weilong will be ok now.

It was had for Weilong when they all had to go. But he slept so well last night. They took him off the morphine and he had tylenol with codine alternating with ibuprofin. Of course they came in and woke him up every couple of hours to take his vitals and make him pee. He was mad at them for that. I stayed with him again, but was able to get some sleep since he wasn't throwing up.

We got home about 3 pm today. Weilong shouted with joy as we pulled up at the house. He was so glad to get home.

A wonderful friend from church just brought dinner to us. What a blessing that is. I didn't get a chance to eat today, and had begun to feel a bit starved. And I didn't have time or energy to cook supper, so it was the most wonderful thing to have a hot meal brought to our home. Can I just say one more time how good it is to have a loving church family.

Things are winding down for the night here. The children are fed, homework is done, and they're watching Home Alone II. Weilong has some swelling in the incision area that has me a bit concerned, but he's active and his pain is under control. I have a bed for him in the gameroom so he can be with the other children. He plays a while, then lays down a while. I will sleep with him for the next couple of nights at least to make sure he's ok.

Good News

Weilong is doing fine! Everything went much better than expected, thank God.

The surgeon removed part of the very back of Weilong's skull and part of C1 vertabra. The most wonderful news of all is that they did NOT have to open up his dura. That means much less chance of complications and infections. I had been told several times that because of how large Weilong's syrinx is that it would be necessary to open the dura and put in a patch. The surgeon checked WL's csf flow before surgery and it was virtually zero. But after removing the skull and C1, there was flow. It's not 100 percent, but they think it is enough and will improve as the syrinx shrinks. So they decided not to open the dura!

During the pre op stuff, I had asked about the possibility of leaving the dura intact, and the PA told me that in only 2 cases have they been able to do that. And in Weilong's case they were sure it would not be possible. But thank God they were able to do the much simpler version of the decompression surgery.

Poor little Weilong had a hard night. He threw up a whole lot, countless times. He couldn't even hold down one tiny piece of ice and he was so thirsty.

But his is the absolute strongest, bravest little man I have ever met. Around midnight he slowly, carefully climbed out of bed to urinate. He simply could not do it laying in the bed. It shocked us all. He did this two more times during the night.

He is doing very well and will get to come home tomorrow. He has begged and begged to go home. He says he misses his brothers and sisters, and his own house.

I'm exhausted, but vastly relieved. And I'm amazed at the goodness of God, and the courage and resiliance of my sweet boy.

Surgery today

Weilong had a hard time last night. I let all the kids stay up late, but finally about 10pm I put them to bed. He was fin up until then. He made sure to hug each one and tell them he'd miss them.

I took a sleeping pill and hopped into bed myself. Well, a little after 11 Julia came into our room and said Weilong was crying.

Poor little man, he said he was so scared. It took me a while to comfort him. And he just couldn't go to sleep. So, we had a contest. Which ever one of us went to sleep first would get $5 from Daddy in the morning. Finally, about 12:30 he fell asleep. I just slept with him all night to make sure he was ok.

I promised him everything would be ok, and told him I have had several surgeries and I'm fine, so will he be. I finally fell asleep myself. I know that God is in control. I'm strangely calm this morning after the weepiest weekend I have ever had. I hid my emotions from the children as best I could.

Well, I'm getting things ready to go. I must leave in less than an hour. I have to wash Weilongs head and neck with some special soap before we leave.

I'll update this blog on Tuessday when I come home for a quick shower. Weilong isn't happy that I need to come home for an occasional shower, but he consented as long as his daddy stays with him.

Saturday Morning

I don't know what's wrong with me today. I'm weepy. I just cannot seem to control myself. This is the way I was when my daddy passed away. I am walking around like a zombie trying to get things done and to have a normal day, and tears just keep streaming down my face. I told the kids I didn't feel well and sent them to the game room to watch a movie. I simply must get control. I hate being weak like this.

My family is rallying around me like they always do during a crisis. My oldest son is working this weekend so that he can take off next week and stay with the children while Gary and I are at the hospital. There is no school Monday so he will be here all day with them. No problem, they love him dearly and are looking forward to spending the day with him. He'll have to take Julia to get her allergy shot though. I am a bit worried about homework next week. The girls have tons of it every night. And all their notebooks have to be signed off by someone, usually me. Think I'll write a note to the teachers.

I think I'll take the kids out for Chinese food in a little bit. Weilong loves potstickers. Then I'm going to get him an art poster that he has been wanting. He can color it next week when he's feeling better and needs something quiet to do. I promised him that he could be the "boss" for a couple of weeks after he gets home. He is so excited about this. He is thinking up things he wants to do, and things he wants me to cook for him. Well, that will be a change. the poor little kids have had to exist on ramen noodles, hot dogs,and canned soup this week. I have had absolutelly no interest in cooking. And my normally clean kitchen is so cluttered and untidy.

That's what I'll do, clean house like a madwoman. No one can have tears streaming down their face as they scrub toilets and mop floors, right???

Pre Op

Today Weilong and I spent a little over 3 hours at the hospital. I forgot my camera... It was relatively painless for Weilong, just one blood draw. Lots of paperwork. And I got to talk with the surgeons assistant and many others. The whole precess was explained to me.

We have to be at the hospital at 6 am on Monday morning. Surgery is at 8 am and will take about 4 hours. Weilong will be in ICU 24 hours. The hospital stay is between 3 and 5 days.

Weilong was stoic and uncommunicative during the whole process. He stuck out his arm for the blood draw and basically ignored everyone. Very unlike himself. He is usually the life of the party, talking with everyone and joking. When we would be left alone, he would ask me to please take him home.

Weilong is old enough to understand what is happening. He assures me that he will be ok, but today I can tell that he is definitely not looking forward to this. Neither am I.

Pictures

Weilong wants to thank everyone who has been praying for him and says he'll be fine. Today was his last day of school before surgery. He wanted to do his homework, then enjoyed playing dominoes with his brother and sister.

Surgery Countdown

What a rocky couple of weeks we've had. Just about everyone has been sick. I think I should get at least an honorary degree in nursing.

Andrea and Hannah had strep. Poor little Hannah couldn't eat and had a fever. She was just miserable. Both are doing fine now after a round of antibiotics. Next Julia got it. She had to miss 2 days of school. Fever, sore throat, headache, vomiting. She too took a round of antibiotics and is doing fine now.

Next the terrifying part. Weilong got sick. Vomiting and headache, no fever or sore throat. And Lisa got cold symptoms and nausea. Man, I was beside myself. I called the neurosurgeon like the paranoid mother I am. Weilong's head was hurting so bad, and he said his hands and feet hurt, and that he couldn't close his hands. Panic! He also said he was having trouble breathing, but no cold symptoms.

After making sure Weilong wasn't in any respitory distress, we decided to take a careful wait and see attitude. As the day progressed Weilong began to feel better. He got out of bed and finally ate a little food and was able to keep it down.

I was actually relieved when Weifu got home from school and started vomiting. That meant it was a stomach virus probably, not Weilong's Chiari Malformation making him sick. Poor Weifu, he had a hard time for a few hours.

But by the next morning both boys insisted that they felt much better and wanted to go to school. We sent them off, telling them to call us if the nausea returned. That was yesterday. And today they seemed back to normal.

All except poor Julia who had an appointment with the allergy asthma doctor yesterday. She got the test that determines what she is allergic to, 76 little needle sticks on her back and 13 rather large ones on her arms. The boys were very impressed with her bravery and invited her to play with them when she got home. They must think I'm a monster, having all this stuff done to them. I wish I could make them understand that it is necessary. I'd much rather be lounging at the pool than waiting endless in the doctors office and seeing my children get shots and surgery. Lord help me, how can I get through the next couple of weeks?

Surely He will not give us more than we are able to bear. I am waking up every morning with a prayer on my lips, and prayer is the last thing I do at night, not to mention all throughout the day. People must think I'm crazy as I go through my day mumbling to myself. I don't think anyone suspects I'm praying, not talking to myself at all. God loves these little ones even more than I do. He has entrusted them to us for a season, and I'm going to make the most out of each precious moment with them.

Julia has started taking allergy shots twice a week, I have gotten flu shots for 2 kids, and will get the other two tomorrow after school.

Surgery is scheduled for Monday 10/8, and our pre op appointment is Friday, only two days from now. And I slept like a baby last night. Well, I was so tired I fell asleep on the couch and then stumbled into bed a bit later. I'm surprised that I can sleep at all with the big day so close at hand.

A Big Day

Can anyone guess what happened today?

Summer Fun

I couldn't get the kids to be still long enough to get a good picture. But you can tell how much fun they had.

The Mouse

You've never seen such a stir as a mouse can cause in a household. And we haven't even seen it, we just know it got into the house last night.

I have an extra pantry in the gameroom. Yesterday I went to the store for the first time in a couple of weeks and stocked up. I left a package of rolls in that pantry along with a lot of canned goods. Today when I went to get the rolls I was horrified to find a tiny whole in the bag and a roll that had been chewed on. I knew it was a mouse, but I wanted Gary's opinion so I carefully placed the package near the garbage can so I could show it to him. I was hoping against hope that the cat had done the deed, but I knew it was a mouse.

Of course the kids noticed the new package of rolls right next to the trash the minute they got in from school. I had to tell them why it was there. They have discussed it all evening. The boys refuse to go into the gameroom unless Gary or I go with them. They do not want to sleep in their own room tonight because they are afraid they'll be eaten alive by mice. Weilong cried because he said he is scared.

What in the world am I going to do??? I asked them why they are so afraid of mice and they both related big scary tales of huge rats in China. Weilong says there were lots of big ones, and that they eat everything, all the food. He says they can even get into the refrigerator and eat the food stored there. What vivid imaginations they have.

I'm afraid Lisa took advantage of the situation and told the boys that it was probably a huge rat and it could bite them and kill them while they sleep. Or maybe it was little evil people who chewed a whole in the bread bag. And they would come out tonight and get the boys while they sleep. I scolded her made her made her tell them that she was teasing. Why in the world did she think it's fun to scare her brothers??

Weilong made me promise not to get mad at him if he screams at the top of his lungs during the night. I promised I wouldn't, that I would come rescue him. So, we're letting the boys stay up until they fall asleep. No scary bedrooms for now. And our exterminator has promised to make a Saturday call to help us out.

All this fuss over a poor little mouse. What worthless cats we have.

Weilong and School

I had a good laugh today after school. I knew it would happen someday, and I have been praying about how Weilong would handle it. At recess a little boy (who shall remain nameless) gave Weilong some sass about how small he is. Here's the conversation as Weilong relayed it to me.

Boy: What's your name?
Weilong: Weilong.
Boy: Well, you're little, I'm big. You go back to Kindergarten.
Weilong: (With fists on hips and an attitude) Oh yeah, well I'm smart and you're not. Every day I finish my work first. What about you?
Weilong: (Still with fists on hips) Every day you talk, talk, talk, and I do what the teacher says. So I have THREE TOKENS! What about you, how many do you have? (Weilong holding out his empty hand to let the boy know he was woefully short of tokens). Do you have 5? or even 1? (The boy says nothing because poor thing has none, not even one.)
Weilong: If you don't leave me alone I'm gonna tell Mrs Wolff. (wagging his hips, with his fists firmly planted on them again)

The poor boy closed his lips tightly and never said another word. He was hopelessly outclassed by Weilong's superior intelligence and ability to argue a case.

I don't think I have to worry about Weilong at school, do you? Now that he has learned English he can take care of himself. He had a few tense moments last year when he couldn't make himself understood. But now according to him, he is the king of the hill. Even if he wavers between 39 and 40 lbs soaking wet, and is the smallest boy in first grade. Well, maybe even smaller than the kindergartners.

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.