Saturday, May 24, 2008
Feelin' Good
Weilong continues to improve every day. Still having headaches sometimes, but not fierce ones like before. He is also gaining weight and strength. And isn't as grouchy as last week.
Yesterday he finally got into the pool for a little bit. It has turned off pretty hot here and the water is warm now.
I also took him to the pediatrician yesterday morning. He had a little fever and sore throat and runny nose. They told me to give him tylenol and cough syrup as needed. Before the surgery I would never have taken anyone to the doctor for such a minor thing as that little cold. But I'm paranoid now and don't want him to get sick and end up back at the hospital.
Hope you all enjoy the long weekend!
Thursday, May 22, 2008
NO Hydrocephalus
The best news we could have gotten is that Weilong does not have hydrocephalus. That means he does not need another shunt. And the mri showed that his syrimx has shrunk a little more. Very good news.
We spent Monday getting blood drawn and visiting the endocrinologist. Weilong had grown 3 Cm since his last visit which I believe was in March, maybe February. That makes him 45 inches tall. Soon he will be 4 whole feet tall. He weighed 40 lbs. Sometimes he weighs 41 when we weigh him at home. He has gained at least 3 lbs since he came home from the hospital. His appetite is very good.
Then we had the MRI on Tuesday morning, then a visit to the neurosurgeon. Very busy week for us. Weilong had to do lots of walking between the hospital and the medical offices building. He tired often and we had to stop and rest a couple of times, but he was able to get where he needed to go.
Weilong has had lots of good days this last week. He still wakes up with a headache, but it is less painful that before. He takes a motrin or tylenol and tries to nap on the bed until the pain subsides. One night he fell out of the bed! Thankfully he landed on his elbow instead of his head. He is a restless sleeper since the surgery, rolling over and over and moaning in his sleep. I look forward to the day when both he and I feel comfortable enough to let him sleep alone. I am suffering from sleep deprivation!
I didn't get a chance to get copies of the mri. They must have worked us into their schedule because it took us over an hour and a half to get called up for the mri which made me have to rush like mad to get to the doctors office. We were late, but no problem. They were behind and we waited another hour before getting in to see the dr.
Weilong has developed an unhealthy fear of hospitals and doctors. He could not sleep the night before the MRI. And as soon as we walked into the hospital, me dragging him, he started to gag and retch. He says the smell makes him sick. When they came for us to go for the mri, he again started gagging and said he was going to vomit. It took me about 15 minutes to get him calmed down enough to go into the room with the technician. And another 10 minutes to get him onto the table for the mri to be taken. Once there he was quiet and still for the mri. They were shocked that he did so well after all that gagging and crying. I told him that if he was not able to lay still for the mri we would have to have him sedated for it, so that was incentive enough for him to do his very best. My heart aches for him, he is really sick, he turns white and breaks out in a cold sweat. He does the same thing when we enter any doctors office. And he refuses to speak to the doctors or even acknowledge them. He turns his back on them and pretends he doesn't see them. So embarrassing.
We will go back to the neurosurgeon next month to check on the progress of Weilong's headaches. The dr said that Weilong has just been through so much that it is going to take him a long time to get back to normal. We are still supposed to take it easy. No strenuous activity, no running, bicycles, jumping, picking up heavy things. Nothing to strain his little neck, or cause csf pressure to rise. But he can go swimming which is good since it's getting so hot. The bad thing is that he's so thin that he absolutely freezes when he gets into the water so he hasn't really been swimming yet.
We have not heard the results of the blood tests yet. I am anxious to know what Weilong's sodium levels are. Also they said his thyroid hormone levels were low so they were rechecking them. They may increase the dosage of levoxyl. They did increase the genotropin dosage by 1/10 mg. The nightly shot is still a struggle, but we do it anyway. That growth is so important.
Our boy is doing much better this week. Still having morning headaches, and occasional headaches during the day, but gaining strength every day. Still grouchy, but sometime he is his normal self. He's very angry sometimes, but he surgeon said that is normal after what he's been through. He said Weilong's personality will return to normal. The anger is all because he cannot do the things he used to do, because of the pain, or because of the shots. Sometimes he is really mad about all this, but we tell him it is temporary and he is getting better each day. He says he knows it, but it still isn't fair!
I'll try again to get a picture of him later. I'd love for everyone to see how much better he looks.
We spent Monday getting blood drawn and visiting the endocrinologist. Weilong had grown 3 Cm since his last visit which I believe was in March, maybe February. That makes him 45 inches tall. Soon he will be 4 whole feet tall. He weighed 40 lbs. Sometimes he weighs 41 when we weigh him at home. He has gained at least 3 lbs since he came home from the hospital. His appetite is very good.
Then we had the MRI on Tuesday morning, then a visit to the neurosurgeon. Very busy week for us. Weilong had to do lots of walking between the hospital and the medical offices building. He tired often and we had to stop and rest a couple of times, but he was able to get where he needed to go.
Weilong has had lots of good days this last week. He still wakes up with a headache, but it is less painful that before. He takes a motrin or tylenol and tries to nap on the bed until the pain subsides. One night he fell out of the bed! Thankfully he landed on his elbow instead of his head. He is a restless sleeper since the surgery, rolling over and over and moaning in his sleep. I look forward to the day when both he and I feel comfortable enough to let him sleep alone. I am suffering from sleep deprivation!
I didn't get a chance to get copies of the mri. They must have worked us into their schedule because it took us over an hour and a half to get called up for the mri which made me have to rush like mad to get to the doctors office. We were late, but no problem. They were behind and we waited another hour before getting in to see the dr.
Weilong has developed an unhealthy fear of hospitals and doctors. He could not sleep the night before the MRI. And as soon as we walked into the hospital, me dragging him, he started to gag and retch. He says the smell makes him sick. When they came for us to go for the mri, he again started gagging and said he was going to vomit. It took me about 15 minutes to get him calmed down enough to go into the room with the technician. And another 10 minutes to get him onto the table for the mri to be taken. Once there he was quiet and still for the mri. They were shocked that he did so well after all that gagging and crying. I told him that if he was not able to lay still for the mri we would have to have him sedated for it, so that was incentive enough for him to do his very best. My heart aches for him, he is really sick, he turns white and breaks out in a cold sweat. He does the same thing when we enter any doctors office. And he refuses to speak to the doctors or even acknowledge them. He turns his back on them and pretends he doesn't see them. So embarrassing.
We will go back to the neurosurgeon next month to check on the progress of Weilong's headaches. The dr said that Weilong has just been through so much that it is going to take him a long time to get back to normal. We are still supposed to take it easy. No strenuous activity, no running, bicycles, jumping, picking up heavy things. Nothing to strain his little neck, or cause csf pressure to rise. But he can go swimming which is good since it's getting so hot. The bad thing is that he's so thin that he absolutely freezes when he gets into the water so he hasn't really been swimming yet.
We have not heard the results of the blood tests yet. I am anxious to know what Weilong's sodium levels are. Also they said his thyroid hormone levels were low so they were rechecking them. They may increase the dosage of levoxyl. They did increase the genotropin dosage by 1/10 mg. The nightly shot is still a struggle, but we do it anyway. That growth is so important.
Our boy is doing much better this week. Still having morning headaches, and occasional headaches during the day, but gaining strength every day. Still grouchy, but sometime he is his normal self. He's very angry sometimes, but he surgeon said that is normal after what he's been through. He said Weilong's personality will return to normal. The anger is all because he cannot do the things he used to do, because of the pain, or because of the shots. Sometimes he is really mad about all this, but we tell him it is temporary and he is getting better each day. He says he knows it, but it still isn't fair!
I'll try again to get a picture of him later. I'd love for everyone to see how much better he looks.
Thursday, May 15, 2008
Doctor visit today
We went to see the neurosurgeon today. He has ordered an MRI for next Tuesday. He is concerned because Weilong is still having headaches. I am too, but they are not as bad as they were. The doctor wants to see if Weilong has mild hydrocephalus. I don't think he does, but I do want an MRI to see what the problem is.
I'm also concerned because Weilong has forgotten some words and other things. I believe that the brain tonsils that were removed have something to do with memory and balance. But it is my understanding that the brain will adjust and other parts will take over those functions. I don't want to cause any undue alarm, Weilong does not have any serious impairment. He just cannot remember the words for some things. But when we tell him the word he is able to remember it. This is frustrating for him, and a bit scary for me. He also has forgotten a few things that happened. This is unusual because he has the best memory of anyone I have ever met.
But he is still able to do math, and reads just as well as he did before. And he still tries to get one over on me all the time! He will have a great career as a negotiator some day. I don't know how much money he has gotten out of me in the last few weeks. All I have left in my purse is a few coins! And he informed me today that when he has children he will not give them money like I do him! The little stinker. He has bargained with me over everything. His latest ploy is that he will not scream and cry when I give him a shot if I will pay him 50 cents. I admit that I gladly hand over the money to him. I cannot stand to hear him cry over those shots. I don't know how much longer I will allow him to do me this way, it isn't right I know. But he has been through so much, and those shots do sting. I figure it is worth 50 cents to have him quietly grit his teeth and hold out his bony little arm for that shot.
Weilong slept in my bed the last two nights and that does cause headache for him. I want him to sleep in a recliner, but he says it is hard for him to sleep there. Tonight I will let him fall asleep in my bed then move him to the recliner.
He was very grouchy with the doctor, refusing to look at him or talk with him. He only said one thing "Can I go swimming yet?" He was very happy when the doctor said yes. Then he promptly ignored the doctor again.
Weilong was happy to get back home again. Since the surgery he does not want to go anywhere. He just wants to be at home. I think he feels safe here, plus he is still a bit weak and tires very easily. But he is gaining strength every day and plays normally with his brother and sisters so I'm greatly encouraged. It just takes time for his little body to heal after all he's been through.
I'm having a hard time because I cannot get out to do errands and things. I am used to doing those things during the day while the kids are all in school. After school I am so busy with the kids and supper that I usually don't go anywhere. But today I am going to make a run to Walmart after I pick the other kids up from school and Gary gets home. It will be my first trip to Walmart in at least two months.
I'm also concerned because Weilong has forgotten some words and other things. I believe that the brain tonsils that were removed have something to do with memory and balance. But it is my understanding that the brain will adjust and other parts will take over those functions. I don't want to cause any undue alarm, Weilong does not have any serious impairment. He just cannot remember the words for some things. But when we tell him the word he is able to remember it. This is frustrating for him, and a bit scary for me. He also has forgotten a few things that happened. This is unusual because he has the best memory of anyone I have ever met.
But he is still able to do math, and reads just as well as he did before. And he still tries to get one over on me all the time! He will have a great career as a negotiator some day. I don't know how much money he has gotten out of me in the last few weeks. All I have left in my purse is a few coins! And he informed me today that when he has children he will not give them money like I do him! The little stinker. He has bargained with me over everything. His latest ploy is that he will not scream and cry when I give him a shot if I will pay him 50 cents. I admit that I gladly hand over the money to him. I cannot stand to hear him cry over those shots. I don't know how much longer I will allow him to do me this way, it isn't right I know. But he has been through so much, and those shots do sting. I figure it is worth 50 cents to have him quietly grit his teeth and hold out his bony little arm for that shot.
Weilong slept in my bed the last two nights and that does cause headache for him. I want him to sleep in a recliner, but he says it is hard for him to sleep there. Tonight I will let him fall asleep in my bed then move him to the recliner.
He was very grouchy with the doctor, refusing to look at him or talk with him. He only said one thing "Can I go swimming yet?" He was very happy when the doctor said yes. Then he promptly ignored the doctor again.
Weilong was happy to get back home again. Since the surgery he does not want to go anywhere. He just wants to be at home. I think he feels safe here, plus he is still a bit weak and tires very easily. But he is gaining strength every day and plays normally with his brother and sisters so I'm greatly encouraged. It just takes time for his little body to heal after all he's been through.
I'm having a hard time because I cannot get out to do errands and things. I am used to doing those things during the day while the kids are all in school. After school I am so busy with the kids and supper that I usually don't go anywhere. But today I am going to make a run to Walmart after I pick the other kids up from school and Gary gets home. It will be my first trip to Walmart in at least two months.
Monday, May 12, 2008
Shot Time
Weilong will do anything to get out of that nightly growth hormone shot. Here's his latest ploy!
Ups and Downs
It has been a week of ups and downs for Weilong. I called the neurosurgeons office last Thurs or Friday and talked with the nurse. I expressed my concern about Weilong's terrible morning headaches. She said the fact that they are worse in the morning is "significant" whatever that means. She urged me to write down things like this and discuss them with the doctor when we go in on Thursday. I asked her for something to help Weilong with his tummy aches. She told me to give him antacids. She said if things got worse or I became concerned to take him to the emergency room. The same speech I've heard many times over the last couple of weeks.
Friday and Saturday Weilong had headaches almost all day long and just laid on the sofa. I was so distressed that I went off by myself and cried a couple of times. He kept saying he was tired, and his tummy hurts. We talked with him about trying to limit the amount of pain meds he takes because we think that may be why his tummy hurts. And I gave him zantac which seemed to help. But he was just plain uncomfortable and in a very sad mood. He has been unable to sleep more than 4 or 5 hours each night because his head starts hurting and wakes him. So, on Sat I made him take a nap. Headache followed, but at least he was more rested.
Saturday evening Weilong got a big surprise. His big brother (the very best brother in the whole world) bought him a Wii and hooked it up. Weilong could not resist going out into the converted garage and playing with it. He was more rested because of the nap and he had a wonderful time.
We talked him into sleeping in a recliner Sat night. We dragged it into the master bedroom so that I could get up with him if needed. He is afraid to go to sleep because that's when the headaches become bad. So, I gave him half a tylenol pm about 2:30 and tucked him into the chair.
He slept til 10:30 Sunday morning! And his headache was very slight when he woke up! It worked. We missed church because I didn't want to wake him up by running my shower and getting clothes from my room. He was mad about that because he had really wanted to go on Mother's day.
He felt so much better on Sunday. We limited the amount of time he laid down. And he only had one bad headache that lasted about 45 minutes on Sunday.
Last night he slept in the recliner again. The first part of the night we had it reclined too far back and he woke up with a headache after about 4 hours. So, I gave him ibuprofen and raised the chair to about a 45 degree angle. He went back to sleep and woke up with only a slight headache a few hours later.
He has played like normal all day today, again only having one episode of headache that didn't last very long after taking tylenol.
I don't know why his head hurts when he lays down, but for now he will continue to sleep in the recliner. I'm so thankful that we seem to have found a way to give him relief from those terrible headaches. It has been awful hearing him cry and bang his head with his tiny fist.
Weilong wants to go to school for a couple of hours tomorrow and I may let him. He's still weak, but gaining strength every day. And now he consistently weighs 39.5 lbs. I think he'll be 40 by next week.
Wednesday, May 07, 2008
Improving
Weilong is improving every day now! He still wakes up with a fierce headache, but within and hour or so we have it under control. His tummy is often upset too, but I'm sure it's from the meds, not anything to do with a brain problem. We're trying to cut down on the amount of ibuprofen and tylenol he gets in a day. It's a balancing act, pain vs too much meds.
He is getting more active, playing for the others for longer periods before he has to lay down for a rest. His saucy personality is coming back too. And he has told me he loves me several times, a sure sign that he feels better.
He still weighs 39 lbs even. I believe he will continue to gain weight though because he is eating very well. He gets hungry every couple of hours like a baby would, but that's good. He needs to eat. He cannot eat a whole lot at once or he vomits.
Here are a few pictures. One is of him with chocolate on his teeth. Ouch, the dentist bills! And of him in my bed with my special quilt that my grandmother and great grandmother made. It gives you good dreams to sleep with this special, almost threadbare quilt. He swears that it does!
And finally their favorite snack, watermelon. Weilong asked for something to eat that was cold and wet. Look what he got!
Monday, May 05, 2008
Monday
All he wants to do is EAT! Yahoo!!!
Pretty bad headache this morning, but we are learning the procedure for controlling it. Ibuprofen first, then carry him to sofa. Get him to eat a few bites, give him a lortab. About an hour later the pain is almost gone.
He's walking around the house freely today! And the swelling at the back of his head seems less to my eagle eye. Not completely gone, but less. No vomiting yesterday or today.
He's doing good. PTL
Pretty bad headache this morning, but we are learning the procedure for controlling it. Ibuprofen first, then carry him to sofa. Get him to eat a few bites, give him a lortab. About an hour later the pain is almost gone.
He's walking around the house freely today! And the swelling at the back of his head seems less to my eagle eye. Not completely gone, but less. No vomiting yesterday or today.
He's doing good. PTL
Weekend Update
It has been a strange weekend of ups and downs. A pattern seems to have developed. Weilong wakes up each morning crying with a terrible headache. It takes several hours for it to dissipate. We give him tylenol and ibuprofen, and sometimes even lortabs. I don't know why, but sleeping seems to give him a headache, even naps.
After a few hours, the headache goes away. Sometimes it still hurts a little bit, but not so bad that he lays on the bed or sofa. He is able to play with the others for hours in the evenings.
Our little man has developed a bit of an attitude though. He is mad. He says that the others can run and play and he cannot. He is angry about that. They are so good to him and play things he likes. Today they let him spray water at them with a spray bottle as they ran past him and tried to dodge the spray, in the back yard of course. He really enjoyed that. He is still too weak and wobbly to run, but is getting much better at walking. He can walk outside by himself now an sit in a lawn chair. He can dip his feet into the pool, but he is so thin that it makes him too cold. The others are enjoying this, but kindly stopped when they saw that it upset him.
He only vomited once this weekend, Sat evening. But today, Sunday, he ate very well several times and kept it all down. No salt pills. Thanks to advice from Melissa I am giving him canned soup and other foods high in sodium instead.
None of us went to church today. Weilong woke me up crying with a headache. I gave him ibuprofen and he fell back asleep for an hour. But then he woke up crying again so I carried him to the sofa. I was not able to calm him down, so I asked Gary to stay home with me. I just couldn't handle it by myself, I was too tired. And it is so painful for me to see him cry with pain. Gary got him to eat a little bit and gave him half a lortab. About one o'clock we kind of made him go outside. He balked, but we knew he would feel better if he got off the couch. For a while he was just plain ornery, but soon he perked up and enjoyed himself. I worry that he plays too many video games, but that's something he can do indoors and it isn't physical. Also, it occupies his mind and keeps him from being very bored.
Overall I think he is improving. Slowly, but surely. If only those mean old headaches would go away. I admit I'm a bit concerned because the surgery was on 3/31 and he's still having pain. Not from the surgical area, but the front of his head around his eyes. One good thing, he has not complained of leg pain for a couple of days!
I will try to take pictures of his incision tomorrow and post them. It seems to be healed nicely, but there is still some swelling, especially on the right side, the side that his head hurts on mostly.
Now for the best news. He weighs 39 lbs! He's gaining a little bit. Even with the vomiting, he's still gaining.
Thank you for all your prayers dear friends and family.
After a few hours, the headache goes away. Sometimes it still hurts a little bit, but not so bad that he lays on the bed or sofa. He is able to play with the others for hours in the evenings.
Our little man has developed a bit of an attitude though. He is mad. He says that the others can run and play and he cannot. He is angry about that. They are so good to him and play things he likes. Today they let him spray water at them with a spray bottle as they ran past him and tried to dodge the spray, in the back yard of course. He really enjoyed that. He is still too weak and wobbly to run, but is getting much better at walking. He can walk outside by himself now an sit in a lawn chair. He can dip his feet into the pool, but he is so thin that it makes him too cold. The others are enjoying this, but kindly stopped when they saw that it upset him.
He only vomited once this weekend, Sat evening. But today, Sunday, he ate very well several times and kept it all down. No salt pills. Thanks to advice from Melissa I am giving him canned soup and other foods high in sodium instead.
None of us went to church today. Weilong woke me up crying with a headache. I gave him ibuprofen and he fell back asleep for an hour. But then he woke up crying again so I carried him to the sofa. I was not able to calm him down, so I asked Gary to stay home with me. I just couldn't handle it by myself, I was too tired. And it is so painful for me to see him cry with pain. Gary got him to eat a little bit and gave him half a lortab. About one o'clock we kind of made him go outside. He balked, but we knew he would feel better if he got off the couch. For a while he was just plain ornery, but soon he perked up and enjoyed himself. I worry that he plays too many video games, but that's something he can do indoors and it isn't physical. Also, it occupies his mind and keeps him from being very bored.
Overall I think he is improving. Slowly, but surely. If only those mean old headaches would go away. I admit I'm a bit concerned because the surgery was on 3/31 and he's still having pain. Not from the surgical area, but the front of his head around his eyes. One good thing, he has not complained of leg pain for a couple of days!
I will try to take pictures of his incision tomorrow and post them. It seems to be healed nicely, but there is still some swelling, especially on the right side, the side that his head hurts on mostly.
Now for the best news. He weighs 39 lbs! He's gaining a little bit. Even with the vomiting, he's still gaining.
Thank you for all your prayers dear friends and family.
Friday, May 02, 2008
Friday update
Weilong vomited, had a headache, and felt bad all evening yesterday. But he was able to sleep very well last night, except for waking a couple of times with a bad headache. I gave him ibuprofen the first time and tylenol the second.
He awoke this morning with a headache, but it left after I gave him an ibuprofen. Shannon took us to lunch at Cheddars. He carried Weilong in and I brought a pillow for him. Weilong ate very well and we were so happy. When we got home I gave him a salt tablet and he immediately vomited.
I am not going to give those to him anymore. I'm just not. It seems like it is worse to vomit the pills and all his food than not to take the salt pills at all. I will continue to heavily salt his food though. I know he must have sodium, but if he promptly vomits it up, then it's useless to take it. He has been eating lots of chinese food with soy sauce, and I add salt to the food on his plate. I don't know what else to do.
Other than the vomiting he seems to feel better today than yesterday. He walks to the bathroom and to other rooms in the house. But cannot climb the stairs yet. Also, he cannot play on the floor or run around and play yet. But he is much better than last week. This recovery is going to take a while. The first surgery was 3/31, so it has been over a month. I'm thankful for the progress he's made, but still concerned about him. He is still so weak and very very thin. Please continue to hold him up in prayer. He who began a good work in Weilong will be faithful to complete it!
He awoke this morning with a headache, but it left after I gave him an ibuprofen. Shannon took us to lunch at Cheddars. He carried Weilong in and I brought a pillow for him. Weilong ate very well and we were so happy. When we got home I gave him a salt tablet and he immediately vomited.
I am not going to give those to him anymore. I'm just not. It seems like it is worse to vomit the pills and all his food than not to take the salt pills at all. I will continue to heavily salt his food though. I know he must have sodium, but if he promptly vomits it up, then it's useless to take it. He has been eating lots of chinese food with soy sauce, and I add salt to the food on his plate. I don't know what else to do.
Other than the vomiting he seems to feel better today than yesterday. He walks to the bathroom and to other rooms in the house. But cannot climb the stairs yet. Also, he cannot play on the floor or run around and play yet. But he is much better than last week. This recovery is going to take a while. The first surgery was 3/31, so it has been over a month. I'm thankful for the progress he's made, but still concerned about him. He is still so weak and very very thin. Please continue to hold him up in prayer. He who began a good work in Weilong will be faithful to complete it!
Thank you West Elementary
Weilong wants to thank you all for the cards and gifts. He loves the cookie gram. Look at the huge smile it put on his little face.
Thank you!!
Thursday, May 01, 2008
Thursday Morning
Weilong visited his class at school today! He was very excited. He got up early and couldn't wait til it was time to go. Then he got all shy at school and had a hard time talking with people.
He walked into school and we used the nurse's wheelchair to visit people. Weilong acted all macho for the hour we were at school. But finally started asking to go home. I could tell he was completely worn out. And I was right. He vomited the minute we walked into the house. Maybe the exertion was just too much for him. At least his tummy was relatively empty as he had not eaten lunch yet.
He can see that I'm concerned about the vomiting, so he keeps reassuring me that he was just too hungry, that's why he vomited. But he is lying on the couch and hasn't offered to get up since, so I think he's just tired and weak.
He isn't having much pain today, but yesterday was a bad day. His head hurt very bad. Maybe it was the most painful day since we got home. I'm thankful that today is better.
The neurosurgeon told me we were in a marathon, not a sprint. I'm beginning to think he is right. And I'm thinking Weilong will not get to go back to school this year. I was planning to take him to church Sunday, but now I don't think I will. He is just too weak to go places yet. He tries to act normal around other people, but is quickly tired out. My heart aches for him. I wish I could give him some of my strength. I wish I could take the salt pills for him. And I wish I could take the nightly shots for him. He is so terribly thin that it is hard to give the shots. The medicine leaves a little bump, like a bug bite when it is injected into his tiny body, and he cries. I use cold spray, but even that doesn't seem to help. I dread those shots.
The teachers, staff, and students at school have been so good to our family. We are so blessed to have people like that teaching and caring for our children. We are surrounded on all sides by caring people. Such a safe, lovely feeling.
I am going to weigh Weilong when he feels like getting up again. I think I may need to call the enodcrinologist. I'm concerned that he isn't gaining weight. He is eating well, but 37lbs isnt enough. His little arms and legs are like sticks. There isn't even enough meat on his little behind for the shots. It was a little bit painful for me to see him with his classmates. They look so healthy and vigorous. I want my boy to be healthy and vigorous too.
He walked into school and we used the nurse's wheelchair to visit people. Weilong acted all macho for the hour we were at school. But finally started asking to go home. I could tell he was completely worn out. And I was right. He vomited the minute we walked into the house. Maybe the exertion was just too much for him. At least his tummy was relatively empty as he had not eaten lunch yet.
He can see that I'm concerned about the vomiting, so he keeps reassuring me that he was just too hungry, that's why he vomited. But he is lying on the couch and hasn't offered to get up since, so I think he's just tired and weak.
He isn't having much pain today, but yesterday was a bad day. His head hurt very bad. Maybe it was the most painful day since we got home. I'm thankful that today is better.
The neurosurgeon told me we were in a marathon, not a sprint. I'm beginning to think he is right. And I'm thinking Weilong will not get to go back to school this year. I was planning to take him to church Sunday, but now I don't think I will. He is just too weak to go places yet. He tries to act normal around other people, but is quickly tired out. My heart aches for him. I wish I could give him some of my strength. I wish I could take the salt pills for him. And I wish I could take the nightly shots for him. He is so terribly thin that it is hard to give the shots. The medicine leaves a little bump, like a bug bite when it is injected into his tiny body, and he cries. I use cold spray, but even that doesn't seem to help. I dread those shots.
The teachers, staff, and students at school have been so good to our family. We are so blessed to have people like that teaching and caring for our children. We are surrounded on all sides by caring people. Such a safe, lovely feeling.
I am going to weigh Weilong when he feels like getting up again. I think I may need to call the enodcrinologist. I'm concerned that he isn't gaining weight. He is eating well, but 37lbs isnt enough. His little arms and legs are like sticks. There isn't even enough meat on his little behind for the shots. It was a little bit painful for me to see him with his classmates. They look so healthy and vigorous. I want my boy to be healthy and vigorous too.
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