Happy Halloween

Our little troop had a very exciting evening. For the last 3 or 4 years I get together with several moms in our neighborhood and we let our children trick or treat. It has become sort of a tradition and a good way for us moms to socialize and compare notes about school and the kids. We also get to say hello to other neighbors who don't have children of trick or treating age. It's really lots of fun for both the kids and us moms.

It was dark and I didn't get any real good pictures, but I took a few of my little ones and of course my Hannah-Pooh while we waited for the other families to get here. I think the high today was 83 degrees. So the boys were warm in their superhero costumes. They came home and all dumped their booty on the floor and compared and counted and swapped for about an hour. Finally I was able to get them into bed. We had to turn our lights off and pretend we weren't home to stop the trick or treaters from ringing our doorbell. I swear some of those kids came around more than once! And this old grandma was tired and ready for the doorbell to stop ringing!

Weilong was nauseous and vomited yesterday, and had some leg pain. They say it is caused by the syringomylia (not sure about the spelling!). Hopefully the incidents will continue to be less frequent as his syrinx shrinks. We have another appointment with the neurosurgeon on 11/20. They will schedule an mri to see how much the csf flow has increased. We're praying for the flow to get better and better. We do not want any more surgeries! Tonight he was nauseous again. I think he is getting too much exercise, being too active too soon. But before you blame me, you should walk a mile in my shoes. It's impossible to keep him from being active. I have never seen a child with such an energy level as his, especially since the surgery. He did not eat any candy at all tonight, so the nausea was not caused by too much sweets. He has not had a single headache in a long time, which is a very good sign.

Froggy

Ever wonder what the kids do when we think they're playing? Well, they play with frogs and bugs and geckos and other fun things. Here's the proof, I found these pictures on my camera.

Weilong is doing very well, maybe too well. I cannot keep him from running, climbing, jumping, and acting like a normal little boy! He is feeling great and is even more active than he was before the surgery. I have never seen anyone so full of life and energy. Thank God.

Better and Better

Weilong stayed at school the whole day today. He didn't have anything for pain until after school. His head wasn't hurting, but his neck is sore. The doctor told me to expect this. They had to cut through the muscles in Weilong's neck, and muscles take a bit longer to heal. So, after school I gave him ibuprophen. Then he played in the back yard with the other children until 6 pm. It was good to hear the shouts and popgun fights roaring out there.

Then they all trouped in and ate like little pigs. Homework came next, then it took them forever to get ready for bed. But Weilong was worn completely out. Tired and sleepy, but in no pain. Thank God.

Notice in the pictures how well he can bend his neck. And he holds his head nice and straight now, not over to one side. We have been so blessed to have such a speedy recovery.

The lab results came back today. It was just the same as last time, very low growth hormone. And a bone age of 4.5. We're praying that the growth hormone works well for Weilong. He still wears a size 4t, so of course he is the smallest child in his class. He absolutely hates it, and we all tend to treat him as younger than he is simply because he is so small. I bet he'll need new winter clothes next year like the other kids. The other 3 had to have all new jeans and pants, but Weilong didn't. I wonder if he'll grow enough by summer to wear a different size? There are lots of size 6 summer clothes in his closet just waiting for him. I had bought them before he came home last summer, thinking a 7 yr old should wear at least a size 6. You may recall that Weilong's Chinese birth certificate shows his birth year as 1998. We thought they must have made a mistake because he was so very small, so we changed the year to 2000 when we readopted him in America. Now we know 2000 isn't correct, but we'll leave it alone. It works fine for Weilong to be nearly 7 instead of nearly 9. Imagine a 9 yr old in size 4t. Weilong likes the younger age because he gets fewer comments on his size this way. He does not like people to comment on how small he is.

His body may be small, but his spirit definitely is not. And he has an unforgetable personality, and a very big heart!

Neurosurgeon Appt

Weilong had a follow up appointment with the neurosurgeon today. He's doing great. We knew it, but it was reassuring to hear the official opinion.

We have another follow up appointment in a month. Until then Weilong still cannot have recess or PE, but he can go to school all day long if he feels like it. He can go outside at recess, but no running or playing on the playground equipment or contact sports. Goodness, how in the world do you enforce that?

Weilong didn't have any pain today for the first time since surgery! The dr told us his stitches will fall out by themselves within the next week or so. They itch a little and bother Weilong. The incision looks great. I'll try to get him still enough to take a picture today.

He's become very active in the last couple of days and it's almost impossible to keep him from running, jumping, climbing and tumbling over. I'm trying not to be so overprotective, but it's hard.

Weilong still wants me to sleep with him, so I'm afraid he's just a little spoiled! What a little turkey. He's so sassy. One good thing that has come of this whole experience is that Weilong has bonded even closer with Gary and me. I knew that he loved and trusted us before, but now it's even greater. We can tell that he totally trusts us to take care of him, no reservations at all. And he loves to tease us. He never enters the room without giving Gary a punch on the arm, or a karate kick. And he still calls me his "little monkey". I don't know where he got that. I'm not little and I don't have anywhere near the agility of a monkey!

We played hangman while waiting for the doctor today. Guess what Weilong's puzzle was? "I love Mommy". Isn't he sweet?

Fall at Last

We woke up to the sound of rain against the windows. And it is chilly outside. The children are all excited. I believe it was 90 degrees yesterday, and today we need jackets. What a difference a day can bring.

Notice the pink dragon on Weifu's sweatshirt. Well, actually that used to belong to the girls. But he loves it because of the dragon, so I just let him wear it if he wants to.

Weifu told me his teacher said "Make sure you wear your gloves tomorrow". I was puzzled over this until I realized that he had worn gloves to school today. It was only in the 50's and 60's today. Very windy and chilly, but not enough for gloves. I bet the teacher gets a kick out of some of the things Weifu does and says at school. The only thing I draw the line at is the girls jewelry. I just cannot let my son go out the door with a charm bracelet dangling from his arm. It took him a while before he became reconciled to the fact that boys don't wear the kinds of jewelry that girls do. He doesn't think it's fair!

I choose my battles carefully, and little things like gloves and his sisters' jackets are not big enough to fight over! I used to let the girls wear their dress up clothes to the store when they were younger. I got lots of stares with my little fairies and mermaids in Kroger. But it wasn't worth forcing them to change clothes. Who cares if people see them in their imaginary world of make believe? After all, didn't we all love fairies and mermaids when we were little girls? And don't all little boys want dragon emblems on their clothes, even if they are pink dragons???

Let's don't sweat the small stuff. Let the kids enjoy being young while they can. Responsibility comes soon enough.

Growth Hormone?

Weilong is excited. We went to the endocrinologist again today and they have decided to put him on growth hormone. It will take about 3 weeks to get everything started. We did some more blood tests today and another xray to determine Weilong's bone age, again. It was 4 and a half in January. Weilong weighs 39 lbs and is 42 inches tall. He looks so thin to me. His little legs and arms are so tiny. The NP told me that growth hormone will give him an appetite and help him gain weight. Also, a nurse will come to our house and teach me to give the shots. Weilong will be getting one each day.

Weilong went to school again today for a little while before going to the doctor. He was so tired that he fell asleep as soon as we got in, and took a little nap. I'm thinking he will only go to school for half days next week. I don't want to wear him completely out.

I'm posting some scary pictures of the boys! And the girls in their little pink panda pj's from Target. Let's all have a wonderful weekend!

10 days post op

Weilong went to school today for 1/2 day! He loved it. I think it really did him good to feel that things are gtting back to normal.

He said his head hurts just a little bit today. I gave him ibuprophen only once, before school. He had a nap after school and has eaten well today. I'm a bit concerned because he is holding his head over to one side and one shoulder is higher than the other. He says it hurts when he turns his head to the other side. I think the muscles in his neck are sore and that is causing the problem. We'll find out when the neuro says next Tuesday.

Tomorrow we hav an appointment with the endocrinologist to see if it's ok to start growth hormone.

I'm afraid we have spoiled Weilong a little bit over the last couple of weeks. He is just enjoying life and we're letting him.

Good Day

Today was the best day Weilong has had. He didn't have to take anything for pain today except one ibuprophen about 3 pm. I'm so thankful. It's good to see him getting back to normal. He still needs to lay down frequently, but I can see him gaining his strength back.

God does answer prayer.

Sunday

This has been a day of ups and downs. Weilong slept late this morning and woke up crying with a headache. I gave him an ibuprophen, and when he was still in considerable pain an hour later I went ahead and gave him a tylenol with codine. It didn't make him sleep, but it did help the pain.

So, for most of the day Weilong was pain free and played normally, maybe just a bit slower than usual. But old mom was worn out and decided to lay down for a nap. I think I slept nearly 3 hours. I feel much better tonight! The girls also took a little nap so Gary had the boys to himself for a while.

But Weilong is having more pain. I'm a bit concerned because his head hurts in the temple area, and he says it hurts if he touches his head. I gave him another tylenol with codine and he's resting now. I will call the doctor tomorrow and make sure there is nothing to worry about. I think the pain is just a result of the surgery, nothing to be too concerned about. There is no swelling that I can discern anywhere but just a little bit around the incision.

Weilong is such a little trooper. He doesn't complain unless the pain is pretty bad. So when he tells me something is wrong, I take it seriously. The nurse already thinks I'm a bit of an alarmist, but I will just have to call her anyway!

I missed going to church today, so it just didn't seem like Sunday. I need to get out of the house, I've been in here since we got home from the hospital. But is hard for me to leave Weilong even for a few minutes.

It's raining just a little bit, intermittently. Sounds so good against the windows. It's going to be a good week!

Saturday, He's EATING!

Finally, Weilong has got an appetite. Until tonight I have not been able to get him to eat anything except soup. Good, nourishing soup made lovingly by our church family. But you know how us mothers are, we worry if our children don't eat like we think they should.

But tonight Weilong had supper twice. He loved the meatloaf and mashed potatoes so much, he had to eat again two hours after his first supper! He wants me to learn how to make meatloaf like this, so I guess I'm in for some cooking lessons. Steak soup and meatloaf will now be on my list of his favorite meals.

We kept Weilong quiet today, even got him to take a nice long 2 hour nap this afternoon. The swelling is much less today, all but gone. And Weilong is beginning to turn his head a little from side to side. He gets tired easily, but is his normal self between times of resting. He even went outside for a few minutes today. His best friends from church visited him and he was so glad to see them. We are overwhelmed with love and support from the most wonderful church on the planet.

Tonight Weilong had his first shower. The doctor had told me he could take one earlier this week, but he refused to get his head wet. He feels so much better after that shower.

One more good thing to share. I have been sleeping with Weilong, and I realized last night that he is not making those choking sounds during the night. He is resting much better. Before the surgery he had problems breathing at night. Thank God, I will not need to worry about him anymore while he sleeps.

Tonight Weilong says his pain is 2 on a 1-10 scale. That's pretty good. We decided not to take him out of the house until Wed or Thursday of this coming week, just to make sure he doesn't get any germs in that healing incision. There is no bandage, the doctor told us to leave it open and it would heal more quickly. Also, Weilong needs to lay his head down frequently and we don't want to put any undue pressure on the neck area.

We have an appointment with the endocrinologist next Friday. I hope they start Weilong on the growth hormone then. He has so much catching up to do. He is very excited about life. The hard part is over and he is so happy because he thinks he can start to grow now!!

Friday Morning

Our little boy slept well for most of the night, but woke up about 6 with a terrible headache. I was very concerned because his head was hurting around his eyes and his forehead. That was one of the danger signs I am supposed to look for. Pain in the area of the incision is to be expected, but pain at the front of the head may indicate a csf leak or other problem. I gave Weilong an ibuprophen and prayed for him. After about an hour the pain eased off and he fell back asleep.

I stayed in bed with him, and eventually I napped too. When we woke up from that nap Weilong felt much better. The headache was gone. And the swelling has gone back down. He says he feels good today, and that it isn't so hard for him to talk. He ate his soup by himself and I have him settled down to read and watch a little tv.

I think I know what the problem is. Weilong is quiet and rests well during the day when he's alone with me. But the moment the other children come home he gets up and plays just like there's nothing wrong with him. This causes swelling around the incision, quite a bit of swelling. And after a bit he becomes exhausted and has to lay down. He says he just can't stay on the bed while everyone else is all over the house having fun and playing together.

So, here's my strategy for the weekend. I will get some movies that the children haven't seen. And I will talk with Lisa, Julia, and Weifu and get them to help me keep Weilong lying down as much as possible. They can watch the movies or play games quietly. When the feel like they simply must get out and take a romp, then Gary or I can play a quiet game with Weilong. That way he will always feel like he's where the action is and maybe, just maybe he'll stop running around like a wild horse. I didn't realize how hard it was going to be to keep him quiet. He's always so active.

Shannon has surprised Weilong with a new game. I think it's a Nintendo DS. It's small and white and it plays all his old games. All the kids are so very excited over this latest acquisition. I don't know what the attraction is, but I'm glad that they love it. Shannon is the absolute best brother in the whole world. I'd take a picture of him and put it on my blog, but he'd kill me. And probably take down my computer network and change my passwords and all that stuff. I don't talk about him on my blog because he would get mad at me, but I simply must say that he's wonderful and we're so blessed to have him as our son.

Well, my little one is dozing off again. Maybe I can turn off the tv for a while and get something done. I'm not used to having the tv on during the day and it's driving me insane

Thursday Morning

I was a bit worried about the swelling around Weilong's incision last night. He looked in the mirror and said "Mom, something wrong, my head is too big". But I think he just did too much. He was so glad to be home. And he played with the other children and even sat at the table for supper. So the swelling was pretty bad.

But this morning a lot of it has gone down, thank God. Weilong went to bed about 10:15 and slept soundly all night long. He woke up at 8 this morning and said he was in some pain, so I gave him 1/2 of a tylenol with codine. I think that was a mistake because he has been dozing all morning long on the sofa. I think I should not have given it on an empty stomach. For the rest of today I will try to give him ibuprofen or just plain tylenol, nothing with codine. Hopefully that will control his pain.

The cats are so glad to see everything back to normal. They are following me from room to room. They even stayed on the very edge of the kitchen while I mopped the floor. They hate the smell of pine sol and usually run like crazy when I get the mop out. But not today. Now they are laying on the floor, gazing up adoringly at me as I type, piney smell and all.

There is absolute silence in the house so that Weilong can rest. So all is well.

---------------later--------

Weilong woke up and is very sore. It hurts him to move. The doctors told me to expect this soreness. I spoonfed him a cup of soup, thanks Sherry, and gave him a sponge bath. He is not in any real pain, but is still laying on the sofa because it hurts to move. I pray that this soreness subsides soon. He also has a raspy voice and is coughing a bit from the tube that was put down his throat from surgery.

So things are going well, just a bit of soreness. Weilong is much slower today than yesterday, but I was told to expect that too. I think we'll just take it slow and easy today.

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.