It’s raining outside. I am listening to music, candles are lit and my house is warm and smells like fall. It makes me smile. Brooklyn is smiling in her swing. Jayden is at school. Jut is at work. These are the moments we are clinging to. This brief since of calm. Of God carrying us.
We contacted the genetic counselor from children’s lat night via e-mail to see if we could get Jayden’s test results prior to next wed as the days of hoping the best and thinking the worst were blending together. She called this morning and told us there are a series of three tests they were doing and the first test was testing his urine to confirm he has MPS. That came back positive. Basically we know he now has MPS we just don’t know what form of it he has. On Friday we will get confirmation on Hurlers Syndrome. Out of the two they think, this is the one we don’t want. If it comes back positive, there is a 50% chance Brooklyn will have it, and, although there is treatment, this is the worse of the two evils. If it comes back negative, we will find out Monday or Tuesday if it is Hunter’s Syndrome. Out of all the syndrome’s this is the better one with more success stories. It also consists of weekly trips to Chicago for treatment. There is a chance that it could also come back negative. If that is the case, more testing will done to see which syndrome he has. The Dr.’s suspect Hunter’s based on his presenting symptoms and the absence of cornial clouding (cloudy eyes). We are hoping now for Hunter’s as the others are worse and we are hoping for early and quick treatments and a mild case of it. That is the best scenerio. Pray with us for that specifically. So what’s next? More testing in all areas of Jayden’s life to see where he is on the progression of the disease and treatments with a specialist at Children’s in the city. There are no guarentees of a long future but the ERT treatments have proven very successful in delaying the diseases symptoms.
We are hanging in there. Jut was hoping for a mistake, that he didn’t have MPS. I think I knew he had it but how I am scared to hear further. We are still leaning on your words and prayers. We are still taking turns crying although my tears have dried up. We are clinging with our nails dug into the truth of God’s promises. His Words are sometimes the only thoughts we can come up with. We are thankful the answers are coming. We are thankful for every moment with our children, each other, and our family and friends. I was telling a friend, it feels like I was living in black and white and now I am living in color. I am sad this is what it took to make me see what it means to trust Christ. Please trust Him with us. Thanks…we love you!