Ryan is on the mend! Thank God. And thank you all for praying for him. We did what the GI doctor told us to do and gave him 1 1/2 times the adult dose of Miralax twice a day (that’s six times his normal daily dose) and it certainly worked. As Travis said, “If we didn’t have a leather couch it would have been on the curb”. Let’s just say Ryan went from not pooping at all to liquid. It was a mess for a few days but he is on the mend and is digesting again. Sunday night he ate two biscuits and has since eaten cheese and Cheerios. He isn’t eating much at all and is completely dependent on the tube feedings which I don’t think will change, but at least we know his stomach is digesting. He’s back to getting only nightly feedings on the pump and four boluses a day into his stomach. The blessing in all this is that we now know how to handle things the next time his system starts to shut down. We both knew if we could just figure things out now that he has the J tube we’d be fine. If we can handle his GI tract shutting down and avoid the hospital, then we are good as gold. He’s still happy as ever and is doing well othewise.
The older kids are excited school is coming to a close. Trevor has several trips coming up – Omaha Zoo, Saltdogs game, end of the year party. Our school does a great job celebrating the end of elementary school. He can hardly wait to get to jr high next fall and I think part of that is having older siblings. Sidney had her first 4×4 volleyball game last night and it was fun to watch too. There are no coaches and the kids just get out there and play together. It was relaxing and a much different pace than tournament play. Of course she was still as competitive as ever but she’s having fun. And Brad had his last jr high band concert and gets his Presidential Academic Award tomorrow at a breakfast for the students and families. He’s very excited to start golfing again with one of his friends. We are getting him a city golf course pass for the summer so they can golf as much as they want.
Travis and I are doing well. He’s busy this month with several days of training and has picked up some extra hours due to the national car races at the airport in May. The Lincoln airport has a mile long landing strip because it used to be an air force base and is one of the few places the shuttle can land if necessary. Because of their extra space, they host national car races out there every year which Travis likes to work. My week has been insane and it’s probably why I feel crummy today. I worked three nights, was off one, worked another night, off one again, and work two nights. This isn’t my normal schedule and let me tell you I couldn’t keep this schedule up if I had to do it all the time. Otherwise I’m very excited to plant flowers this week; it’s one of my absolute favorite things to do. I think we have fourteen or fifteen flower pots so it takes a while but I’d do it every week if I could. I think I just love the color and beauty the flowers bring.
On Saturday we had a meeting with the Masterpiece group at church. This is a new ministry for special needs kids and adults our church is starting and we are blessed to be a part of it. It’s really exciting to see where we will fit in and how our experiences may help other families. We were sharing our story since there were a few people we didn’t know and one of the other men said “if it’s God’s will, it’s God’s bill”. It sounds kind of cheesey but it’s so true. When God decides it’s time for us to start Ellisbrook, he will provide what we need, including a bigger house, to do it. My heart has been so moved toward caring for special needs adults and I am so excited to see this up and running. We will start small with just a few adults in our home and if God chooses to grow us into more homes and as big as my dreams are, then He’ll do it. For now we just keep praying about it and trust that when the time is right, we’ll know it and move forward.
Thanks again for all the support so many of you have given us over the past several months. I am still in awe, every single day, of how loved our little boy is. How loved all of us are. It’s very inspiring to see the goodness of God lived out through the generosity of others. We have so many cards and emails from people expressing their concern for our family and it’s been an honor to be able to say thank you and really mean it. I know all of the events that have led us to where we are right now on our journey are simply a part of God’s plan to prepare us for whatever is to come. It’s exciting because we’ve learned to thank God for his provision in the past, live by his grace for today and believe in his perfect will for all of the tomorrows to come.
Thank you for such a detailed update, as usual! I so look forward to reading them, and they help me better pray for specific needs for all of you. God is good, and He can be trusted in EVERY situation, ALL the time.
Praying for your family,
Phyllis