Hi all,
This is going to be a catch-up post. A lot has happened since I posted an update. So there is a lot to cover and I intend to do it here.
First of all, Mandy has been rapidly moving from not eating at all to eating soft food. And she is doing very very well at it. And as a result, about three weeks ago, we removed her Mickey button. This in itself is a major victory for us, and an answer to a 10-year-old prayer. As I often say, we are one step closer to a happy meal. And we really are. We’ve been taking her out frequently, and she will eat pretty much anything we give her. Or I should say she will at least try it. She loves broccoli and mashed potatoes among other things. She does not care for most meats. I think it is the texture. And she has a difficult time eating breads. Regarding the meat through her class recently took a field trip and they ate lunch at a barbecue restaurant here in town, and she ate brisket for the first time and from what I have been told she ate quite a bit. Let’s face it Mandy is an amazing child.
All has not been a bed of roses. With her Mickey button out there is a small hole in her stomach that has not closed completely. Therefore she’d leaks frequently. We have to bandage her up several times a day to try to keep the hole covered, so the contents of her stomach won’t leak out. It has been very frustrating. And we’ve had to spend quite a bit of money on supplies. Because we not only have to supply supplies here at home but we also have to provide them to the school. I am praying every day for that hole to close sooner than later.
One of the issues that we run across to recently as a result of removing the Mickey button, is trying to figure out how to give Mandy medications. Fortunately most of her medications or liquids. But they don’t have the best taste. You ought to see the look on Mandy’s face when I have to give her one of them. I feel for her. I remember what it was like to have to take medications like that when I was a kid. We are working with the pharmacy to add some kind of flavor to the medications to make them a little more palatable for Mandy. The two pills that we have to give her, are a different story. One of them is small enough to crash and give her by mouth and she doesn’t seem to mind that too much. The other one is almost a horse pill and we have to break it up and find a way to give it to her like in her applesauce which she loves.
So as you can see it’s been very interesting and challenging. But I wouldn’t have it any other way. Seeing her eat now is a real joy, and I give all the glory to God. He’s never let us down.
So now I have a major announcement. I have been working on a book. It’s called the other side of Mandy’s story. You see there are many things that I was not able to share on the blog that happened.u the reader deserves to hear the whole story. That is what I intend to do. I’ve been working on this book for about 10 years. It’s been one of the hardest things I’ve ever had to do. But I feel that the story needs to be told. Some of these stories will make you cry. I still care up when I’m editing because of the emotions and the pain that I felt at the time. Some of them will make you laugh, and some of them will just make you shake your head in disbelief. Still that story must be told.
A publisher has agreed to help us get this book published. But we need to raise the funds to cover the costs. So we set up a GoFundMe campaign to raise the funds. Here’s the link. If you can help awesome we really appreciate it. If you can’t help please keep us covered in prayer and share the campaign with as many people as possible so that we can meet our goal and accomplish this 10-year goal.
Heres the link to the campaign https://mandysstory.com/donate
I appreciate all the support we have received over the years. We could not have gotten as far as we have, with a life as normal as we can make it without your help.
Please feel free to comment below this post. God bless you and yours and have a great Thanksgiving.
