This week has been a bit tough. We’ve taken some steps backward with Ryan but nothing that is too alarming at this point. He has been gagging a bit after his meds are given and having some stomach pain, hitting at his belly. He’s not doing this every time but on occassion. And the seizures are coming back too. Not the big ones that make him fall over; those are the ones this last surgery was suppose to stop, and did. The mouth seizures are back and today he was tremoring (I doubt that’s really a word) so I had to give him Ativan. Travis took Ryan to Omaha Tuesday while I slept to see the neurologist. He didn’t have any insight into why Ry is having stomach issues but did change one of his medications around. He also changed the frequency of Ryan’s vagus nerve stimulator so instead of turning on for thirty seconds every five minutes, it now turns on every three minutes. I’m not sure that’s going to make much of a difference, but it’s worth a shot. The doctors really don’t know what to do for him anymore. But again, he’s happy. And into everything. It’s like having a one year old who never grows up. Anything and everything he can throw down the stairs, he throws. It’s common to hear people say to others when we can’t find something “did you look at the bottom of the stairs?”. He’s really into slamming doors – repeatedly – and jiggles the door handle until it opens again only to slam it shut and laugh. He has been very curious lately getting into dresser drawers and closets. We’ve found all kinds of things stuffed where they don’t belong. I was in the kitchen the other day and kept hearing him laugh. I knew he was getting into things and sure enough, he got into his closet and was throwing all his feeding supplies down the stairs. And I found a dirty washcloth and some other stuff from the kitchen counter stuffed in the silverware drawer. He’s a curious toddler in a huge eight year old body. And while his antics are often amusing, he can be completely exasperating at the same time. But he’s happy and listening to him laugh never gets old.
Everyone else is doing just fine. Brad has been exercising a lot to get ready for summer football conditioning and can’t wait to be done with jr high. And he’s still the most social of our kids who can’t bear not to be with his friends every second he’s not in school. Sidney has only two more volleyball tournaments left for the year and is really transforming into a beautiful young woman. Trevor has been spending lots of time at the park after school and loves his new cell phone. I have to say it’s nice to be able to reach him now when he’s not home. He starts baseball practice next week and was also put in the gifted program for jr high. I still can’t believe the kids are done with elementary school after this year. Or that Brad is starting high school. And by kids I mean the older three; Ryan is kind of his own entity. At our house it’s like having three kids and Ryan. Trevor really is like the youngest because he’s really the last to do all the normal things kids do. That might sound cruel to some people but Ryan will never take a test, read a book, make a science project or get excited because he got an A on a report. He’ll never understand what jr high is or worry about what others think. He’ll never have a cell phone or ride his bike to a friend’s house. He’ll never spread his wings, learn to drive or have to decide where to go to college. In some ways it’s easier to watch the kids grow up and get excited about their achievements and successes because we will always have Ryan who isn’t going to experience the same things the older kids will but instead will always rely on us for his care. He’ll never stop needing us. It’s just a different way of life, an unusual way of looking at the kids as they grow up. But it’s our normal and we’ll take it.
One thought on “heading back”
Thanks for the update. You and Travis continue to amaze us. Continuing to pray for you as your adventure continues. Love, Crystal