If you are just getting in on the action, you need to read Part One first. Some stories make sense and you don't need to read the first book, but on this one...I think it would clear up some questions if you do. So, go here if you haven't read it yet. =)
Before leaving the hospital, our doctor friends from Wuhan gave us a call. They had been talking and the brought up a diagnosis that we should also look into. It was Cri-du-Chat. I remember specifically, our friend saying to us. Don't look up anything on the internet. It will only alarm you.
We understood their warning, but looked it up anyway. The pictures of the children looked like they could all be Matthea's siblings. The interesting thing was this sense of peace. You see, we knew that the life expectancy of people with CF was maybe 18 years old. But, people with CdC could live much longer.
I learned a lot about submission to God and his plan during our stay in Beijing (that is another post in itself!)
We left Beijing on Business class with a traveling nurse. Matthea was out of danger, but the hospital wouldn't release us without buying a nebular machine or the nurse escort. So, we opted for our insurance company to get us an escort. Matthea had oxygen the entire flight and slept for most of it. I, therefore, slept the best I'd slept in the past week. How could I not with the nurse across the aisle AND my feet up in a reclining position.
Enter the US and lots of testing. First, was the blood test of Cystic Fibrosis. Negative.
Neurologist met with us and ordered some muscle tests.
She was poked with needles to test the muscle reaction. Negative.
Reflux Tests. Positive
Then a chromosome test was ordered.
I remember that day. I sat in the doctor's office with my mom and Matthea. He walked by and stuck his head in the door, I have good news!
I thought to myself, Awesome! She doesn't have any chromosome problems. But, wait 'Good News' to a doctor is finding the problem. She has a chromosome problem. *deep breath*
The doctor came back in and talked with Matthea a bit. Then he sat down and began to try to tell us that Matthea had been diagnosed with Cri-du-Chat. I had been reading about it and knew what he was talking about.
Are you in the medical field, somehow? He asks me after I tell him what I already know about this genetic disorder.
I shake my head and explain how our friends had told us to look into this, but I had forgotten until they the chromosome test was ordered.
He nodded. He then told me that we needed to do one more test regarding aspiration, which was scheduled for that day.
Aspiration Test. Positive
Results? Matthea was scheduled to have surgery in two weeks to stop relux (fundoplication) and have a feeding tube inserted (MIC-KEY Low Profile Gastrostomy Feeding Tube). But, the following day we were to return and be admitted into the hospital for the NG tube to be inserted. This is the tube that goes into the nose and down into the stomach. We had to stay overnight and I had to learn how to insert the tube in case it should come out at home. Let me say this, I'm not a nurse and this was NOT a fun time for either one of us. I practiced on the hospital doll. Then before they would release us, I had to insert it once into Matthea. I guess you could call it my test. I passed and we went to the airport to pick up Uwe and Marcus. I say, we because my mom was with me the whole time. She was (and still is) a trooper!
So, began our tube feeding days. The NG tube did come out once or twice and I "got" to put it back in. The surgery went well and we began to see therapists weekly. Thus, our lives changed.
During all this chaos, we were ready to move to the US. We talked with the doctors, the surgeon, and all the therapists. Not a single one of them told us we had to return. In fact, when we told them we were thinking about it, many replied "Why?"
The feeding tube is easy to change. We'll send you with a few extras and if you need more just email our office and they'll get them to you, the surgeon said.
We'll give you some papers with exercises you can do with Matthea. Here is her goal for the next year. If you have questions or problems, email us, said the therapists.
Jaws dropped, we looked to God and said, Okay then, we'll go back until you tell us to leave. What do you have for us to do now?
It's been a long process and one that is by far completed. But, as a Christian, does the process ever end here on Earth? Yeah, that's what we say. Heaven is gonna be sweet. But, until then we keep moving forward.
Sometimes it's trudging.
Sometimes it's skipping.
Sometimes it's running.
Sometimes it's simply walking.
And this week, we are skipping....celebrating this milestone in Matthea's development.
Thanks to all those who walked with us during those bleak and dark unknown days. I won't name you all because there really are SOOO many.
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