Weilong has had several medical appointments in the last month or so. Yesterday he went for his 1 yr post op MRI. Everything looks the same as 6 months ago. We want the syrinx to shrink, but unfortunately it is still there and unchanged. The neurosurgeon said we should think about yet another surgery, one more complicated than the last that would fuse some of the vertebra and go in from the front of Weilong's neck. The purpose is to relieve pressure on his spinal column. But we have decided not to do any further surgery at this time. Only if Weilong's symptoms get much worse or if his life is threatened.
Most of the time Weilong is pain free and leads a very normal life. He still has occasional headaches and rarely has nausea and vomiting. Very rarely. The headaches don't last too long and are controllable with just tylenol or ibuprofen.
Also, Weilong is still unable to balance well enough to ride a bike. This embarrasses him, but there is nothing we can do about it. The surgeon said the more extensive surgery may or may not improve Weilong's balance. He said Weilong has some permanent damage to his spinal cord from the syrinx, so the surgery may not help even if the syrinx shrinks.
The decision not to have more surgery was not a difficult one because Weilong said he'd rather die than have more surgery. And as he is doing so well we didn't even try to urge him to consider it.
Now for some good news. Weilong visited the pediatric endocrinologist this month too. And he grew another 1.4 inches in the last 3 months. He is 48.9 inches tall. He has broken the 4 ft barrier!! And his feet have grown another size too. He's wearing size 7 pants now, and just 15 months ago he was size 4. That stuff works. He's 52 lbs, so he's gaining weight, he just looks so thin because he's getting taller so much faster.
We have also had 3 renal sonograms in the last few months. Before the press came out about melamine in the infant formula Weilong began having trouble urinating. Once he was unable to urinate for a whole day. So of course I took him to the doctor early next morning. But by then he was able to urinate normally without pain. There were moderate traces of blood in the urine, but no sign of UTI. A couple of wks later it happened again and they sent us for a renal sonogram. Weilong had debri or crystals in his bladder. The pediatrician consulted with a urologist and they decided to repeat the sono in 3 months. But before that WL had pain urinating again and more traces of blood in the urine so we had the sonogram early. Now it showed nothing in the bladder. A couple of months later Weilong again experienced difficulty urinating again and pain in his lower abdomen. There were moderate traces of blood in the urine, no UTI or infection present. Another MRI was clear. We're stumped. If the pattern is repeated the pediatrician said he'd refer us to a urologist. For now he wants Weilong to drink a lot of water regularly.
So, that's the latest medical update for my sweet little boy. He's sassy as ever and still the sweetest boy on the planet.
