It’s been a month and a half and I’m back to updating the blog again. I had to take time off to finish up my schooling from the spring semesters. I’m sure you’re wondering how I did; don’t worry, I’m wondering the same thing. I know for sure that I passed my computer science class with an A. Now math on the other hand might need to be retaken. Let’s just say that I lost interest in remembering it after Carson was born. So on that note, let’s talk about him and get the scoop on what’s happened over the last six weeks.
Surgery: Carson had his two inguinal hernias fixed two weeks ago. While they had him under they also circumcised him and had to descend his testicles (a common problem with the omphalocele). Everything is in the right place now and he’s healing very well since the surgery. At that same time he had an MRI of his head taken to look at the size of his ventricles in his brain and to check for a Chari malformation. Dr. Fearon spoke with me this week and said he was very surprised by the MRI. Everything looked great! His ventricles were average size and there was no Chari. We’re really happy about that; we treasure all the good news we can get.
Carson is off oxygen! He’s also been using his synthetic nose that goes on the end of his trach during the day, and then goes back onto humidified air at night. That means that we get to turn off the compressor during the daytime! Peace and quiet never sounded so good. Carson has been spitting up his feedings quite frequently also. We tried a number of things from changing his feedings to upping his medicine, to giving him less formula powder mixed with the breast milk. Nothing was working and we were fearing that Carson would need to have a nissen (a permanent surgery done to the valve at the top of his stomach; just google it, I’m not an expert). Heather, the good mommy that she is, has found out what is really bothering him. Frozen breast milk. Good thing that we don’t have a 5 cuft freezer downstairs that is full to the brim with it. So she has been giving him fresh milk and the spitting up is gone. I’m kind of surprised that our doctors missed that option.
Last month Dr. Fearon told us to expect for Carson to have his cranial vault surgery first, to fix the fused and separated plates in his head. He has since changed this because of the good results from the MRI and now wants to proceed as normal; fingers and toes first, head last. He said that that schedule will still depend on how Carson’s 6 months prictures look. Dr. Fearon said that he wants to wait as long as possible (not past 15 months) to do the vault. He said that because of Carson’s tall, skinny head, that he may not be able to wait that long because once the head gets too tall, it’s hard to get it back down into a normal shape. We’ll see what happens with that.
My dad (Stephen’s dad) has been working very diligently at finding donated transportation for us to get to Texas. Originally we had planned on driving down there all together, but a cheaper option would be to send Heather, Carson, and I down to Texas while my parents watch Avery here in Utah. (That way she gets super spoiled by Grandma Kitty and Grandpa Moose.) So far we have many very good options for free flights ranging from commercial flights from AA, to using private planes and corporate jets. I never realized how generous people are when it comes to children.
Carson is moving into his own bedroom tonight. We decided to move him out of the living room since he doesn’t need to be on the monitors during the day. That way, we can treat him more like a normal kiddo with regular nap times and so on. We have noticed that he sleeps a lot. We’re going to be talking with our pediatrician more about that this week.
Well I’m sure Heather will read this and tell me that I left out a ton of information. So plan on another post soon with all of the odds and ends. Until then…