Sunday, June 26, 2011

Enjoying a chocolate ice cream cone


Eating muffins with Maeve

Caleb had his occupational therapy appointment last week. He did a good job showing off his skills. He crawled, he drooled, he stood propped against the couch. He needs to work some on his form, but overall, he is doing great! Since Tuesday, he has already started using his knees more and is showing some interest in pulling himself up.

I realized that there are some little things that I probably have not included yet. So here are some things you should know about Caleb:

- He is 10 months old now.
- He still has no teeth.
- We have not found a food he will not eat.
- He eats all the time.
- He still has not made it onto the charts for weight. He would need to be about 1.5 pounds heavier to hit the 1 percentile weight. His constant motion and success at crawling are not helping the weight gain. Bring on more chocolate ice cream!
- His vision and his hearing seem to be just fine.
- He is on two medications per day. Three doses of his heart medicine (Captopril) to help his heart function better and one half of a baby aspirin to thin his blood. He usually takes them without too much wrestling. We think he actually likes Captopril.
- Only a portion of his blood actually flows through his lungs. The rest goes into his right atrium, then across a hole into his left atrium, through his mitral valve into his left ventricle, across a hole into his right ventricle and out through his aorta. For those of you trying to picture this, some of his blood comes into his heart, goes around in a circle passing through more abnormal holes than valves and goes out without being oxygenated.
- Because only a portion of Caleb's blood goes through his lungs, his oxygen saturations are lower than normal. Normal blood is considered around 100% oxygenated. Caleb's runs around 80 to 85% oxygenated.
- Caleb has one more scheduled surgery. This surgery will re-plumb his circulation so all of his blood will pass through his lungs. His oxygen saturations should then climb into the 90%+ range. This surgery is usually performed between 18 months and 5 years of age. We are thinking that unless it is recommended otherwise, we will lean more toward the younger side of things. Of course, there are pros and cons to doing it early, but our hope is that he won't remember anything if we do it while he is still young (and in diapers with pacifiers for comfort and unable to ask why he needs to have surgery).