A Journey Begins

I don't know how to condense this all in to one post. But I'm going to try. I hope I don't ramble. I hope it all makes sense. Yesterday's events almost seem like a blur bc of the abundance of information that was poured in to our brains over a 5 hour period. There were emotional highs and lows. Moments of "I have no idea what this means." But all morning I felt extreme comfort and peace. It was so obvious that you all had been praying for us that morning.

So, our journey began Wednesday night as we checked in to our hotel room in Temple. We had to be at our first appointment at 7:45am and thought it would be best to stay close to the hospital so we didn't have to leave at 6am. We wanted Brody to be as rested as possible that morning. Brody boy slept in a big boy Queen bed all by himself..and took up the whole bed. We prayed over our sweet boy, for healing, that he would be cooperative and for the doctors.

Our first appointment was with Dr. Blazo, a doctor in Genetics.

At 7:45am we were sitting in the biggest exam room I had ever seen. It had a small round table for us to sit and talk with the doctors. It had books, a toy box, and coloring pages to keep Brody entertained. They knew exactly what these little kids needed. Brody was in heaven. We filled out some paper work and were told the doctor would be in by 8. Dr. Blazo, along with a resident and a visiting student, walked in right on time. From 8am until 10:40am we talked to them about Brody's history, how we knew something was wrong, and on and on. Dr. Blazo examined him and then we sat and talked some more. Based on his condition and his history, we talked about 3 different types of muscular dystrophies he could possibly have. (I'm not putting the names on here partly bc I don't actually remember what everything stands for, and partly bc I don't want anyone googling them and coming up with all these scary results.) Actually 2 were types of muscular dystrophy and the 3rd was more of a neurological/nervous system problem. During her exam, she couldn't find any reflexes in his legs. Something that was also discovered at his appointments at Texas Children's a few months back. I need to point out here that the muscular dystrophies we discussed ARE NOT the typical MD that you see with Jerry's Kids. That is an extreme case of Douchenne's MD. Based on blood work he did a couple of months ago, its pretty conclusive that he does not have that. They are re-doing that test though just to double confirm.

We spent time talking about these 3 diseases, but never went in to much detail about their progression and how they affect the patient's life. It wasn't time for that. We didn't even know if he had these things. We talked more about how they could be passed down genetically and how they were going to test it all in his blood tests. I know that I'm probably forgetting something important that was discussed in this first appointment, but I think this was the gist of the appointments.

At 11:00 we met with Dr. Ritch, the neurologist. The appointment started out like the other, talking about history and his symptoms. And then she examined him. And discovered the same thing. He has no reflexes in his legs. After more discussion, she felt it looked more like a nerve problem and not a muscle problem at all. She wanted to test for a neuropathy, as well as the same nerve problem that Dr. Blazo had talked to us about.

This next part is probably one of my favorite parts of the whole day. She told us that she wanted to talk to Dr. Blazo so they could collaborate on what exactly to test for. She didn't want to say we weren't testing for the muscle diseases if Dr. Blazo still felt we needed them. We went back to the waiting room for about 30 minutes while they talked and when we were brought back again, BOTH doctors came in to talk to us. It was just a great feeling to see both of them working together, determined to find out what was wrong with our baby. They both agreed whole heartedly on what he should be tested for, and concluded that our first step is to test for the neuropathy, and the other nerve/neurological problem.

A nurse came in to take Brody's blood. She asked if we'd need someone to help hold him down. We said maybe. So with 2 nurses plus Matt and I, Brody laid on a table to have lots of blood drawn from his arm. And let me tell you, that little 2 year old boy was braver than some grown men. He just watched them stick the needle in his arm and never made a peep. He even told the lady "thank you" in the middle of it for saying he was so handsome. He got 2 prizes from them for being so brave. They said he was the best patient they'd ever had.

We left with a few conclusions:
1)The bloodwork could come back saying he has neither of these disorders. And if that's the case, we'll continue to test for all of the other things we talked about.
2)None of the options we talked about affect the brain. Brody's mind and amazing personality will not be affected by whatever it is.
3)And, obviously, the most reassuring thing was hearing that none of these diseases shorten life expectancy. Depending on the results, they may affect way of life and may require lots of therapy, but we can handle that. And the Lord can heal him.

So today we are thanking the Lord for answering prayer so far. He gave us peace yesterday. Brody was more cooperative than we could have ever asked for, especially for a 5 hour appointment. The doctors were knowledgable and compassionate and so determined to find an answer. We'll be seeing them a lot over coming months and I'm so glad to know that they are in it for the long haul. And the biggest praise, is hearing that everything seems to be pointing to something that should not shorten his life or affect his mind. God has been so faithful through all of this. And we know that no matter the results of tests, He will continue to be faithful. We need Him through this journey. We want this situation to bring Him glory.

Thank you all for your continued prayers. We still need them. We honestly don't know what we want the results to say. If they come back negative, it means more testing. It means he could still have something that could be even more serious. But we would also rather hear that he has none of these problems. We are still praying for complete healing. But also praying that if God chooses not to take this away, that its a mild case or a disorder that is manageable, would not cause Brody pain and would not greatly alter his life. But, we know that God is ultimately in control and can completely heal him at any point in his life.

I know that I'm leaving things out. I'm sure as soon as I hit "Publish" I'll remember something else. And Matt will probably remind me of something else. And I'm sorry this is so long.