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.