Ryan is doing so well! His stomach is healing, and we are certain it is because so many people have been praying. Thank you! God is good and we are really enjoying the spunky little boy who is into everything again. He can be a real pain in the rear but that’s simply because he is developmentally just a curious little one yr old in most things. He’s back to his annoying throw-everything-down-the-stairs routine and when we can’t find something, we all simply say “check at the bottom of the stairs”. If we ever move we’re having an enclosed staircase!
As for his feedings, we are trying something new this week. I bolused 2 oz of formula into his stomach and within an hour it was digested. So later in the day I did 4 oz of formula and 1 oz of water yesterday straight into his stomach and he did great. I wrote down a new schedule we are trying and hopefully it will work for now – keep overnight feedings on the pump at 70cc/hr into his small intestine and give four boluses into his stomach during the day. I figured out the calorie count and this gives him about 1200 calories a day with the formula which is close to half way between the 1500 he was getting on all day feeds with the pump and the 800 he was getting with three boluses before his brain surgery. He is eating more these past few weeks but not nearly as much as before surgery. And he still won’t drink anything from a cup at all. Hopefully he will continue to tolerate the new schedule so we don’t have to keep him on the feeding pump during the day. I can’t tell you how nice it is not having him carry the backpack around all day! I don’t know that we are going to hurry to have his feeding tube changed back so it only goes into his stomach instead of what he has now with one port into his stomach and the other in his jejunum. We are well aware that he is very prone to both ileus and gastroparesis problems now since he’s had both so we will probably keep the g/j tube so we are ready if we have more problems down the road.
He has been saying bye independently and can now say hi without being prompted. Other than that mom is the only word we hear him say and even that is sporadic. Of course he can still repeat a few words when prompted, and we always hear all his loud squeals and laughter. And he’s enjoying school but is still only going for 2 1/2 hrs each day from 1-330. He is taking naps in the morning for up to 2 1/2 hrs so we don’t want to shorten those since he is still healing. This works for now so we’ll do what’s best for Ryan and keep him home most of the day.
Everyone else is doing just fine. The older kids are ready for summer and are starting to count down the weeks until summer break. Trevor is excited to start jr high and Brad is really excited to start football weight training in June for high school. Sidney has two more volleyball tournaments left then she is done until summer camps. And Trevor starts baseball soon which he has never played but is very excited about. Travis and I are good and have enjoyed some more time together lately so we feel much more connected than we had been during the height of Ryan’s hospitalizations and those first couple weeks home. Life just marches on as we all know. Now if only we can get everyone through this allergy season!