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
Here is a site for sore eyes...Jerry eating by mouth. No solids yet, but we will take what we can get. They delivered him a liquid lunch tray of chicken broth, apple juice, and jello, but he turned his nose up at it apprehensively. The doctor said he may need his behavior therapists to work with him on eating again because he has conditioned himself to refuse food because he is afraid of feeling sick and vomiting. We finally coaxed him into eating his beef broth on his dinner tray though. He even followed it up with a banana popsicle. And so far, no nausea or vomiting.
Other good news came with the moment of truth on the scale tonight. He is now 69.5 pounds. That is 4.5 pounds since he hit his low of 65 pounds last week. Granted, the doctor says the first few pounds he gains will be water weight, but weight is weight and it has been worth the wait.
His Picc line is still in, but only for water right now. The TPN has been stopped. Hopefully in the next day or two, the water will be switched to go in with his feeding tube instead and the Picc line will be removed. They don't like to leave those in children any longer than they have to. As long as he has continued to gain weight by the end of the week, and the vomiting has not returned, we can take him home. We. Can't. Wait.
A home healthcare company delivered a feeding tube pump to us today, along with a pole to hang it from and a backpack so he can be mobile. The nurse gave us a tutorial on threading the tubing and entering the correct feed amounts into the pump for when we get home and a home health nurse will come again to go over it all with us when we are actually at home. The GI says that we will continue the feeding process leading up to solids at home nice and slowly and she will monitor his progress weekly as an outpatient. When he has put on enough weight and his small intestine is no longer obstructed by the artery, and his stomach is doing its part in the digestive process, the feeding tube can be removed.
Unfortunately, this means that our week trip to North Carolina for the Joni and Friends special needs family retreat has to be postponed until next August. We are sad about this. We were all looking forward to it. But we need to stay close to the GI doctor for a while and, in all reality, how much fun would Jerry really have at the retreat toting a feeding tube around everywhere with him...no zip lining or swimming. All activities restricted. Our family representative at the retreat center said that all of our money paid, gifted, and scholarshipped will remain in our account until next year and we will not have to go through the application process again.
We are still going to take the week off. We need the family time, especially now. We are just going to find things close to home to do instead, maybe even a few days in Orlando.
Prayerfully, this will all be behind Jerry before school goes back. Before would be even better so he can swim and enjoy some of his favorite summer activities before routine kicks back in for all of us.
Thanks for continuing to keep us in your prayers. Keep them coming and we
I am a Christian. I am a wife. I am a mom. I am an author. In that order.