Calvin update

Mr. Calvin has been through quite a bit the last month. We went to see a pediatric neurosurgeon in Portland, Dr. Kongel in early March. The doctor reviewed Calvin's MRI in great detail with Caleb and I. He showed us that Calvin's ventricles are twice the size they should be due to all of the extra fluid that is in his head.The doctor did a lot of tests and spent about 45 minutes with us and taking a very accurate history. He is an amazing doctor and we are very lucky to have someone so attentive.

Here's the short of what's going on:

Fluid normally moves around the head and then exits and is reabsorbed back into the body. In Calvin's case, the fluid is not exiting fast enough. We aren't sure if the extra pressure is causing pain for Calvin, he is very happy and doesn't seem to be bothered by it. We really aren't sure if the pressure is causing damage to his spinal column either, and that makes us a little nervous. We hate to have Calvin undergo an unnecessary procedure if his body will respond and take care of the swelling on it's own. Caleb and I both have very large heads, so there is a family history of big-headedness. Calvin is developing physically, but he is behind the norm. The development is not alarming in and of itself, because we all know some babies just learn things faster than others. But there are some tests that could be a sign of a problem, for example, Calvin will not put his hands out to catch his fall. He lands forehead first- every time. Calvin can sit-up now and he can put food into his mouth now too. All good news!

Here's the growth chart. Since the MRI, his head has continued to grow. This means that the swelling is probably more than it was when the MRI was taken. Luckily Calvin's head still has a soft spot, so the pressure is less than if he were an adult:

Here's what we are doing next:

Calvin is getting his eyes checked this week. They will look to see if his nerves are pink (getting a lot of blood supply) or white (has too much pressure). We are also going to see another specialist at OHSU who is the pediatric surgeon who would perform the surgery for Calvin, if we decide that's the best option. And here's my favorite part- we get to do some additional "testing" for things like Glutaric Aciduria. Mostly just blood work, which is no big deal. But there is one test that will prove to be entertaining. The doctor wants a urine test. Not just any urine either- the first one of the day. So, we get to try and convince Calvin, who is 8 months old, to hold his pee until we can clean him off and strap this little baggie to him. Can you imagine how fun this will be?! It makes me laugh just thinking about it. I told Caleb that this should be a father & son bonding moment. I hope he agrees!

Here's my little man sitting up, all by himself. He still crashes a lot, but he's getting stronger!