I want to take just a moment to direct you to Andy Savage's website, where he blogged yesterday about his son, Cooper.Here is the link: http://andysavage.net/default.aspx?p=84018&beid=116524 Becky and I have never met the Savage family, but I feel like I have because of Andy's regular tweets about his life, job and activities at Highpoint Church.Cooper has Down syndrome, and a recent surgery has developed complications. I've had Cooper and the Savages on my mind quite a bit this week. Here's an understatement: It's not easy when your child is in the hospital. Time crawls to a stop. So much of our society has turned into "you can get it as soon as you want it," which is the exact opposite of what happens in the hospital. There, you can't get it when you want it, and sometimes doctors don't have the answer you want - or an answer at all.Hopefully, Cooper will bounce back quickly. In the meantime, keep him and his family in your thoughts.
It's been a long time since I've updated about Jarrett. I'll try to do better. (Be warned, graphic discussion is ahead...)
We've had a great couple of months. Sure, we've had hiccups along the way, but late Summer/Early Fall 2011 is full of positive memories.
A couple of weeks ago, we attended Step Up for Down Syndrome. Our friends and family came through for us on this - big time. We set a fund-raising goal for "Team Jarrett" of $1,000. Though the team page doesn't reflect the few, final donations we received, we ended up raising $1,500 for the Down Syndrome Association of Memphis & the Mid-South. Amazing! The actual walk was a lot of fun, too.
Jarrett is developing quite a personality. To the dismay of his mother, he prefers to be with me much of the time. We're not sure why - but he has definitely fixated. He loves his sister, and is very curious about Kitty. He's not quite sitting up yet, but he is getting very good at playing with things like balls, rings a squeaky toys. And, to quote a daycare teacher, "he rolls like a tumbleweed."
Medically, we are working hard on moving food through his body. Essentially, Jarrett has two problems with his digestive system.
1. Gurgles. I know it sounds weird, but I don't know how else to put it. The boy's belly makes the weirdest noises I've ever heard. Like a pressure valve opening and closing. You've really got to be there to experience it. Our gastro doctor put it best when he said, "It's not right." So we are working on figuring out what is happening. An barium swallow test last week ruled out any blockages. Could it be an allergy to formula? Still checking. Related to this may be the occasional bacterial infection that causes him to lose his appetite. Usually, an antibiotic helps with that.
2. Lack of Pooping. Jarrett rarely poops. It's up to us to clean him out with a catheter and saline, usually a couple of times per day. In between these washouts, unless he spends ample time lying on his belly, his stomach fills up with air like a balloon to the point where he is miserable and won't eat. Our gastro doctor says occasional botox injections are going to be the likely aid with helping him "relax and open up" down below.
Because of all this, we keep careful track of his daily food intake:
Overall, the boy is doing pretty well, all things considered. It's hard to believe we're coming up on 11 months since he was born. We are really looking forward to the upcoming Christmas season, and praying that everyone remains in good health. We didn't have a very enjoyable Christmas last year, so we are very ready to enjoy the holidays.
We've been having a lot of trouble lately getting Jarrett to eat. At this point, we're not sure what the cause is. But it HAS CAUSED a lot of worry for his dad. I took this picture the other night to show off his latest haircut.
Our surgeon gave us the go ahead last week to start feeding Jarrett "solid" foods.Here, he's eating sweet potatoes. This was just after a bottle, so he wasn't too hungry. So far, his favorite food seems to be apples. Becky is making all the (solid) baby food herself - we aren't buying anything pre-packaged.-Jason
I have been watching and listening to Louis CK quite a bit lately, and laughed out loud when I heard this portion of a routine about getting his kids to eat. (Note: The video contains strong language.) We've been having our own struggles with Jarrett eating. He's supposed to be eating at least 30 ounces a day of formula, but he's hovering in the 20 to 24 ounce range. Since his surgery, he hasn't gained all that much weight, which is a source of increasing obsession for Becky and I. So when I stumbled across Louis talking about trying to get his kids to eat, I had to share.-Jason
I call this post "On Closure" because that's what I'm trying to focus on right now - closure.
For Jarrett, closure comes in the form of his pull-through surgery, which was performed one week ago today. Gone is the colostomy, the sometimes annoying bag we've had to keep stuck to our child's side for the past six months. In its place are scars, and our boy's much maligned digestive system adjusts once again to medical intervention. It was a tough week. I can't speak for Becky, but I was definitely not prepared for the physical toll the surgery took on our child, especially in the first days after it was done. Last Wednesday, I found myself having full flashbacks to the awful first days of his life, time spent in LeBonheur's NICU when such things were still new to us. Often, I don't feel responsible enough to have a mortgage, let alone make decisions about whether or not to give my baby another dose of morphine. By Friday, Jarrett was coming around to being his old self again - the smiling, happy baby we love was back. Now, eight days later, he's still getting back into the swing of things. We're struggling to get him to eat enough, and his poor bottom has the worst diaper rash I've ever seen. But he's home, surrounded by family. That's important. For me, this feels like closure because it's (hopefully) the end of the physical, medical odyssey we've been on with this child. Yes, he is very susceptible to lung ailments, and we could find ourselves at Le Bonheur when Cold and Flu season picks back up this fall. But for the first time, we don't have "another surgery" on our calendar. We just have the unknown future. My mindset has been to worry about the physical ailments now, and Down syndrome later. Perhaps I have been in denial about that. I could write forever about how much I appreciate my friends and family, who have been so great to us through all of this. Luckily, everyone knows who they are, what they've done, and how much we love them. At least, I hope! AS AN ASIDE: I'm weighing whether or not it would be appropriate to post "before and after" pictures of Jarrett's colostomy. More than one person I've talked to has been interested in this. I'm a little fearful, however, of the pictures being shocking to people that aren't ready for them. Any thoughts? As always, thanks for stopping by...-Jason
