Five on Five

Update on Joshua

Five consecutive days.

Five doctor/hospital lab visits.

One very cooperative young man.

For the most part.

Wednesday, we headed north to the pediatrician and although I had called ahead to explain Joshua's needs before we left for China, the doctor was still in shock. After about 10 minutes he made it clear that one appointment wouldn't be enough. Then two EKGs, two x-rays, and two hours later, we walked out with lab and x-ray orders in addition to our "goody bag" to check for parasites. That was a new one for me, another fun job to check off my parenting list.

Thursday we headed to the hospital for a specialized back x-ray and a ton of blood work. A ton means 6 vials. I was halfway through filling out extra forms before I realized what they were for, those not so nice diseases. I often have to put N/A or Unknown and that makes me sad for my kids who will never know their history.

The bloodwork was as expected. The first arm gave 3 vials. And Joshua was quite unhappy. But nothing compared to what he thought when they had to go to the second arm for the rest. HE WAS MAD. I apologized to everyone in the waiting room, "It really wasn't as bad as it sounded."

Friday, we headed back to the pediatrician for a followup and to develop a plan. Here is what we know so far: Joshua does have scoliosis. It may be a part of his rib cage expansion because of his enlarged heart. He will need to see MANY specialists.
* Orthopedist
* Geneticist
* Endocrinologist
* Opthamologist
* Audiologist
* Developmental Evaluation
* Possible testing through the local school system.
We didn't see all that coming because we were focusing on the heart issues. We got the right guy for the job though because this pediatrician is GREAT. He is willing to coordinate much of the care and will try to schedule a lot of the specialists when Joshua is hospitalized.

Joshua also had two of his five immunizations. I have a rule that I will only allow my kids to get a maximum of two shots. The doctor and I came to an understanding, I think.

Monday, we headed an hour south to the pediatric dentist for an evaluation. Although the schedule was a little grueling, I was happy to be gathering so much information. Poor Joshua has 10 things to fix and is a candidate for a couple hours in the hospital. I am not sure they understood that we could not go to the local hospital and make that happen.

Tuesday, we were back up north to the pediatric cardiologist's satellite office for an evaluation and an echo, an ultrasound of the heart. Good news and bad news. There were no surprises and Joshua's condition is what the cardiologist surmised by the information we had gotten from China.

So we had the talk.

About quality of life.

That is where we are.

If God chooses otherwise, we will witness a miracle.

I told the Dr. M that there is surely a reason Joshua has survived this long.

He said Darwinism.

I made it clear I wasn't that kind of believer.

We will head to the hospital for a 3-5 day stay in the near future for a heart catheterization and possible MRI. We will try to see as many specialists as possible while we are there thus avoiding a billion other appointments. We will also try medication and get it regulated before we come home.

My single goal right now is to see Joshua breathing better. His respiratory pattern hurts my mother's heart. It is hard to watch your child work so hard to breathe.

We have the BEST cardiologist. He explains everything and is incredibly patient with our questions.

For your viewing pleasure. It has been quite entertaining to tell people that he speaks no English. They don't know quite what to say. Fortunately he is very cooperative and with my poor Chinese and a little sign language, we muddle through.
Why does every doctor want to know the names and ages of siblings? I have spent considerable time on that zebra bench.Managed a cleaning. Yeah, Joshua.There you have it.

An update on our boy.

Only God knows what the future holds.

And I'm okay with that.