I suppose some of you thought I fell off the face of the earth! Sorry it’s been a few days between posts but we are all alive and kicking. I worked three nights in a row Saturday, Sunday and Monday, and it’s been an adjustment trying to get into some sort of routine. Ryan is still having the retching episodes that last an hour, easily, in the morning and at night. We’ve been giving him Robitussin several times a day to see if that helps but have had to really play around with his meds; we still haven’t figured it out. This morning I unhooked his pump for an hour after I gave all eight of his meds to see if that would help and while he got the same fear in his eyes and grabbed for me like he does right before his episodes begin, he simply burped a couple of times and settled back down although he wouldn’t let me get away from him for almost an hour. I wish he could tell us what bothers him and what he’s feeling in his abdomen. It’s really a big guessing game and we are just trying to figure out what works and what doesn’t. We are supposed to call the GI doctor tomorrow so we’ll see if they have any ideas. Right now we are spending an hour three times a day trying to keep him from being uncomfortable. With six meds to give twice a day plus two meds to give three times a day, we can’t spread them all out too far or we won’t get anything else done. One of these days we’ll find something that works!
As hard as this new transition has been, especially with Travis losing his job and trying to figure out what exactly he is supposed to be doing, we have been so blessed. There is no doubt in either of our minds that Travis working part-time right now so he can be home all day with Ryan is the right choice. We are disappointed we won’t be able to get some of the projects done around our house we had on our list of things to do nor will we be able to pay down some debt as fast as we’d like. But in the long run those things really don’t matter; what is important is that we are taking care of the gifts God has given us – our family. And every single day since we’ve been home, God has shown us in one way or the other that we are right smack dab in the center of his will and he is taking care of us. It’s amazing to see first hand how he works through other people. We have been blessed with boxes of goodies, gift cards, financial help, meals, people coming over to pray with us, phone calls and emails. I can honestly say I’ve never been so humbled in all my life. If ever I’ve needed proof that God provides, I’ve seen it first hand these past few weeks. I continue to pray Proverbs 30:8-9: Keep falsehood and lies far from me; give me neither poverty nor riches, but give me only my daily bread. Otherwise, I may have too much and disown you and say, ‘Who is the LORD?’ Or I may become poor and steal, and so dishonor the name of my God. And he has done exactly that – given us exactly what we need, no more and no less. My paycheck on Friday for the two weeks prior ended up being $56.53 because I ran out of time bank very quickly with Ryan in the hospital for four weeks. The hours I did have all went for our insurance, 401K and taxes. But God has been providing just enough to pay our bills and keep food on the table. We keep telling the kids, “God knows exactly what we need before we even know we need it” and they have been able to see his provision for us too which is amazing. I’ve learned more than anything else these past few weeks to store up my treasures in heaven, not here on earth. It’s a concept I’ve been familiar with my whole life but never have I really seen it in action and felt God’s provision like I have this past month. My faith has grown these past few weeks like I have never experienced and I’m amazed at the peace that comes when I continue to put my faith in His plan. Just like 2 Peter 2:2-3 says: Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, now that you have tasted that the Lord is good. Why God is allowing things to turn out as they have I don’t know. But I do trust that his plan is so much bigger than what I see. He sees the big picture and my job is to trust in his perfect will and do what he has called me to do right now – be a living testament to his goodness and show others the love of Christ. I simply have no idea how people live without Him. Christ came to give us life – eternal life – and I’m so thankful for the grace he gives to see us through our time here on earth. I hope my life is a living testament to His love and grace.
The other kids are doing much better now that we are all home and back into some sort of routine. They seem less stressed and are getting very excited for spring break next week.
Here are a few pictures from our time here at home. Ryan was able to get out yesterday to the store with Travis then we took him to school to see his paras, teachers, nurse, other staff. Everyone was so excited to see him but he got overwhelmed after about twenty minutes there. He wears out so fast but who can blame him after lying in a hospital for four weeks and having brain surgery too. He’s doing as good as can be expected and we are letting him rest as much as he needs which seems to be a lot.
Ryan snuggled up on our ride home from the hospital last week.
Playing with his toys wearing his feeding pump in the backpack.
This is where he spends most of his day lately….on the couch, usually sleeping.
His feeding pump is on the floor next to him.
This is what the inside of the backpack looks like and how he carries the pump and bag around.