Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
We got home Thursday evening around 7. It was great to be home, but a little scary and overwhelming too, knowing now that we were on our own with feeding tubes, flushing lines, and mixing formula. That's pretty funny actually. I've had four babies of my own and there has never been baby formula in my fridge until now when I have four teenagers!
We were pretty exhausted and just lounged most of yesterday. Jerry's pump alarm goes off every four hours to let us know he needs more formula and so it really is like having a baby again with getting up in the middle of the night. After almost two days home now though, I think we're getting into the swing of things a little. Later today, we are going to test out Jerry's backpack the hospital sent home with us and try and get out of the house for a little bit...get some sunshine...even if it is in the form of running errands.
When we got home from the hospital Jerry walked in and said, "Did we get new stuff? Our house looks so different." I guess if we thought two weeks in the hospital felt like a long time, it was an eternity to Jerry! He walked around touching stuff and asking, "Is this new?" It was funny. We thought we'd have a difficult time getting him back to his sleeping routine because of how wonky his sleep habits were in the hospital, but by 8:30 Thursday night, he was asking to go to bed. Amazing actually how smooth a transition back home it has been.
The worst part has been the rest of us having to eat while Jerry still cannot. In the hospital, we left his room to go and eat so he wouldn't see us. At home, that's just not possible. The trick is we have to tell him how terrible the food is we are eating while we eat it. Friends ordered us pizza last night and we had to make faces and pretend it was disgusting when he asked us about it. He is still limited to clear liquids and so we have stocked up on broth and icees and popsicles. It's hard to get creative with those and make them taste different or better than the last time he ate them. Of course, every channel we turn to on TV has food and restaurant commercials!
The best part about being home is sleeping in our own beds, showering in our own showers, and Jerry finally getting to take the baths he loves so much. Last night he worked at taking the bandages off where his PICC line was. He had to keep them on for 24 hours. He worked at them in the tub until he finally got them off and then said, "Oh my gosh mom! There's a hole in my arm!" That freaked him out just a little and he wouldn't use his arm for the rest of the night, but he's back to normal with it this morning.
With time to reflect since I have been home, there has been much to be thankful for...even over the last few weeks and all of our hospital drama. Trying to keep it all in perspective, I have made a list.
My point? God is good...all the time. All the time, God is good. I am sure I will think of more things that were blessings and we can be grateful for as the time passes, but that's my list for now.
And we do still need prayer. Jerry is still not out of the woods. We have to work towards getting this feeding tube out, prayerfully before school starts. His stomach and intestines need to learn to handle solid food again and he needs to gain weight. So keep praying. Just because we are home doesn't mean we still don't need it! Thank you again to everyone who has encouraged, supported, called, reached out to, fed, and loved on our family over the last few weeks. You are blessings beyond words.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.