Cleaning House

This past week, we got rid of all of Matthew’s special medical equipment. The oxygen tanks and the special feeding pump with its IV pole are gone! The extra NG tubes and feeding bags are boxed up and in the basement, since the medical company couldn’t take them back. (If anyone needs them. . . . let me know!)

On one hand, I’m thrilled to have all that stuff gone! It’s great to have the extra room, to not have all that stuff in the way . . . to have Matthew doing well enough to not need it!

At the same time, it makes me a little nervous. Our “safety net” seems further away now. It’s hard to believe that Matthew is really done with all of that. If we needed any of the equipment, we could get it back, of course, but it’s not as easy. And, Matthew’s eating has been very borderline. We work like crazy to get enough calories in him. Aaron said today, “I bet we spend 7 hours a day trying to feed Matthew!” I haven’t timed it, but I wouldn’t doubt it. His “goal” is 30 oz/day, and for awhile he was getting 27-29. But, lately he’s fallen to 24-26 ounces a day. (He is starting to eat solid foods, though, so we’re trying to estimate how many calories of the Gerber sweet potatoes actually made it to his stomach, and how many are smeared on his face and clothes!) We desperately want to keep him tube-free, but at the same time, we want him to get the nutrition he needs. Aaron also said, “Matthew, I think I’ve spent your whole life worrying about you!”

But, Matthew looks great, he’s still pudgy and not showing any signs of weight loss or dehydration. He’s getting more active, and more alert every day. I’m really having trouble keeping him off his belly for his “sternal precautions,” because he is so good at rolling around now! Yesterday, I set him down on his back for just a minute while I took Micah to the potty. When I came back, he had rolled over twice in the direction of Micah’s toy truck, and was lying on his back playing with the truck! It was the first time he had rolled with a purpose of getting something he wanted!

When I look at Matthew, I know he’s doing well, but when I look at our feeding chart, I start to worry. And, the numbers really do worry Aaron, too.

Heavenly Father, We can’t thank you enough for Matthew – for the true miracle that he is, and for how he has already touched our lives and so many others, too. We are so grateful for our sweet boy. Thank you for letting me be his mother. Please forgive us when we worry and forget to trust in You. Through everything, You have been in charge, and Matthew has undoubtedly been in Your hands. We know that You will take care of him, that You have been taking care of him, and that you will never abandon him. Help us to keep trusting You in everything, Lord. Take our worry and our fear, and help us to focus on Your incredible Ways, and Your beautiful baby boy asleep in his crib. Amen.

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2 thoughts on “Cleaning House

  1. Amy, this is beautiful! I know I can’t begin to truly understand the fear and apprehension, but one thing I do know is this: if there has ever been a reason to TRULY take things one day at a time, it is your son. He is LIVING proof that God has a plan, worrying is useless, and prayer means everything. And you’re right…if you should need to start him back on a feeding tube (God forbid!), it won’t be that difficult to get the equipment back (even if it were hard for the average person, you two have connections!!). You’ve done it before and you can do it again–Matthew is SO strong (and you guys know that), but don’t underestimate the strength you and Aaron have as Matthew’s parents. Come what may, you guys can and WILL make the best of it. I hope you know how much I pray for you, and I am just one of MANY–more than you know! And just remember, someone who shares a name with Matthew told us, “”Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34). Love you guys!

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