So, the results are in…and they are nothing short of AMAZING! Prayers were answered. Jack is pretty much living proof that God is good. I can honestly say that Ray and I walked out of that office with an initial feeling of the world being lifted off our shoulders. We still have a very long, hard row to hoe but it seems much more manageable today.
This was our third trip into Dr. Hadaji’s office. Jack was so calm, cool and collected in the waiting room. This is not his usual reaction. He is usually nervous and whiny. This was also the first time Bria accompanied us. Daddy too. I joked that he thought it was finally Bria’s turn to get poked. Poor boy. No such luck. They called his name and we went into the same dark little room. Thank goodness he wasn’t immediately crying. The assistant came in to write a few things down and check him out. I started with my typical apologetic, he’s going to scream. I am so sorry. We can deal with it if you can… She laughed and said, “At least he’s not screaming yet.” Uh oh. She remembered. Then again, I’m not quite sure how you could forget.
Dr. Hidaji came into the room. Jack was visibly nervous but not crying yet. I may have small bruises up and down my arms from him nervously pinching my skin. I have to stop for a second and say… I am so proud of Bria. She is my most demanding child. If she knows and adult needs to talk to me, she is pretty sure her need to speak trumps all. I was prepared to shush and quiet her or have her little hand tap my arm 2007 times. She was good as gold writing in her book. Jack wasn’t screaming and so we got to hear the MRI results… Clean.
I think I was in shock. We had been prepared for anything. Jack’s pediatrician warned us about missing whole pieces of the brain. They were looking specifically for midline brain damage which in Jack’s doctor’s opinion would be the worst case scenario. There was no brain damage. There were two minor things that Ray will have evaluated back at work, but Dr. Hidaji said they were inconclusive and inconsequential. Jack’s eye muscles need to be moved so that his brain can essentially speak to them a bit easier and keep his eyes where they are supposed to be. It’s, as far as surgeries go, an easy peasy one…if you can get measurements.
Time for the chair. Measurements include holding an instrument over one eye while Jack looks at a distance. Jack was… um… less than cooperative. He wouldn’t let the doctor do it. He wouldn’t let Ray do it. He only wanted out of that small room. He was not happy and was prepared to possibly fight his way out if I let him off my lap. The doctor measured Bria’s eyes. He measured my eyes. He tried to let Jack hold the instrument. No joy. Jack balled his fists up and started to cry.
In the end, the doctor can’t do surgery without proper measurements. We could try to bring him back once a week until he his more comfortable. The move to Hawaii is looming. If something did go wrong… it would take an extra 6-8 weeks. Dr. Hidaji seemed to feel pressured. We clearly were feeling the crunch. We all decided to look for a doctor in Honolulu that Dr. Hidaji would work with. We are taking a calculated risk putting it off but… risking surgery without good measurements seems so much worse. We’re talking about his eyes. I’m totally at peace with waiting.
Jack has a strong team in his corner. Navy peeps are already helping search for the best pediatric opthamologist in Hawaii. We have a moment to breathe while we wait to get to a new state, but speech therapy is on the top of our list. We are going to ask for a full development evaluation. It seems Jack just has lots of catching up to do. There have been moments over the last 6 months that Ray and I have watched Jack and thought, there has to be something else. It can’t just be lack of stimulation. There has to be something else. His diagnosis yesterday seemed to confirm that it is lack of stimulation. It is so hard to think about Jack’s past, sitting in a crib with no one to speak to, no one to hug, nothing to engage him. Jack has lots of work in his future. We are so happy that he has a very bright future to work toward. We’re so very grateful to the team of people that are helping us help Jack.
Now it’s time to say thank you. My phone was dinging all day yesterday with sweet messages, texts, emails and phone calls. Not just yesterday either, I had phone calls all week. So many people were checking in on little man. I am overwhelmed and humbled by how many people are cheering him on and praying for him. Thank you doesn’t seem to be enough. Please, don’t stop now. Keep those prayers coming, as we look for therapists and a new surgeon and he faces yet another move… We’ll need them.