TWO YEARS OLD

I was going to write a long post.  An emotional one...about how quickly the time has gone.  And how desperately I want to get that time back.  How sometimes when I look at the pictures of them when they were little, really little, I become panicked.  Because I can't remember....every little thing.  Like how easily both of them fit in my one arm.  Or the noises Blake would make when sucking on his binky and the way he would turn his wrists in little circles when he was excited.  Or that we called Beckett our little bonobo.  Because he had such a perfectly round head and a such a wonderful open smile.  Or how after baths their hair would look like fuzzy chickens, all fresh and spiky.  Or simply the fact that last year at this time I was drinking a glass of champagne, crying over the rapidity of the last year and the accomplishments of my babies.  And now this year, I sit here....no glass of champagne, simply because we don't have any, but winded none the less.  At the wonderment of this past year.  And oh, what a year.  My babies are toddlers.  Their personalities are emerging.  Ready to soar.  Here I stand, grounded watching the beauty that is about to unfold.  

Tonight I will cry.

Tomorrow will be grand.

Happy 2nd Birthday Babies.

a diagnosis

Blake has idiopathic thromobocytopenia (ITP). ITP is the condition of having an abnormally low platelet count (thrombocytopenia) of unknown cause (idiopathic).[1] As most incidents of ITP appear to be related to the production of antibodies against platelets, immune thrombocytopenic purpura or immune thrombocytopenia are terms also used to describe this condition. Often ITP is asymptomatic (devoid of obvious symptoms) and can be discovered incidentally, but a very low platelet count can lead to an increased risk of bleeding and purpura. ITP is diagnosed with a complete blood count (a common blood test). In some situations, additional investigations (such as a bone marrow biopsy) may be necessary to ensure that the platelet count is not decreased due to other reasons. Treatment may not be necessary in mild cases, but very low counts or significant bleeding might prompt treatment with steroids, intravenous immunoglobulin, anti-D immunoglobulin, or stronger immunosuppressive drugs. Refractory ITP (ITP not responsive to conventional treatment) may require splenectomy, the surgical removal of the spleen. Platelet transfusions may be used in severe bleeding together with a very low count. Sometimes the body may compensate by making abnormally large platelets. Visible symptoms of ITP include the spontaneous formation of bruises (purpura) and petechiae (tiny bruises), especially on the extremities, bleeding from the nostrils, bleeding at the gums, and menorrhagia (excessive menstrual bleeding), any of which may occur if the platelet count is below 20,000 per μl.

When we were admitted to Kosair, his platelets had dropped to 3,000.

When the diagnosis came, it was a relief. I wanted to cry with gratitude but at that time I was so tired, beyond tired. When we were admitted to the hospital, the hematologist came and talked to us. There were two possible diagnoses. Only two. ITP or leukemia. Leukemia? Typing this now, it's all so surreal. I still feel much like an observer on that night. That it didn't happen. Not to us. I never cried that night. Not one tear. We took turns holding Blake. Neither one of us slept. We just watched the infusion of immunoglobulin drain into our son's body. Praying that it worked. With every ounce of our being, we prayed. Sometimes silently, sometimes out loud. Very loud. The immunoglobulin drug made Blake sick. He had a fever. He was sweating. He had chills. And he vomited...all night long. Yet he never cried. Merely whimpered. Letting us hold him. Inhale the scent that is Blake. Revel in the innocence that is our son. Before a simple blood test could change everything. We had to wait eight hours after the infusion was complete before they could redraw his platelets. I lost track of time. But I know that it was morning, for the sun was streaming into the room, laying its fingers upon Blake, when the doctor came in. His platelets were 17,000. It worked. It wasn't leukemia. And still I didn't cry. We were discharged late that night. We were exhausted. And Beckett? Sweet boy, he was with my mom, but so happy to see us. Oh, I missed him. I kept thinking that if the diagnosis had gone the other way how different his life would be. How I would never see him, because I would always be in the hospital with Blake. And I was full of gratitude as hugged him. As I hugged both my children. But still, I didn't cry. And now, as I write this...I am exhausted. At the end of a rope that is quickly fraying. Adjusting to this new normal is draining. Blake has to go to the doctor every other day for a blood count. We go to clinic every other week for a check up. He can not climb. He can not have playground play. He can NOT fall. If he falls, we are headed to the ER for a CAT scan. Why? To make sure that he is not bleeding in his brain. In his brain?! Currently his platelets are at 30,000. He is beginning to bruise again. All over. Once his counts drop to 20,000 we will be going back into the hospital for another infusion. This can last from six months to two years. In less than 5% of the cases....it can last a lifetime. His whole life. That would mean no contact sports. EVER. The literature states that the incidence of ITP is 50-100 per million. Per million?!And my son got it? I am beyond overwhelmed. I feel as if I can't close my eyes, turn my head, take a breath without worrying about where he is. And the guilt if he does fall? Ha. Get a shovel and bury me. And yet, and yet despite this hardship, it could be worse. Much worse. We could still be in the hospital. My baby could be receiving chemotherapy. Losing his hair and he fights for his life. But we are not there. We are here. And for some reason, my child was spared. Oh, the plans He must have for him, for me, for all of us. The lessons we are learning. The taste of humility upon our tongues. I am not saying that this is a road I want to walk down. I don't. But I acknowledge the fact that while I walk this road, I will be able to walk it with my son beside me. That we will be able to celebrate his 2nd birthday together. I just wish that the tears would come.

In the hospital

It's 6am and I'm watching my husband hold my son. In the hospital. It's all happened so quickly. We went to Florida the day after Christmas, to spend some time with my inlaws. The visit was going great, (aside from Chris having to have emergency surgery for appendicitis). But I kept noticing that Blake had small bruises on his body. In unusual places. On his ribcage, his belly, his upper arm, his upper thigh. I mentioned them to Chris, because I couldn't explain them away. Blake is sturdy, Beckett still falls. Yet it was Blake with all the bruises. We decided that as soon as we got back to Kentucky we would do a CBC on Blake. We got home Saturday night. I had an appointment Monday. But then last night after giving the boys a bath I noticed a rash on Blake's elbows. I called Chris over. He completely flipped out. And in that single moment I felt as if somebody punched me in the gut. Chris called his friends over, also pediatricians, to look at Blake. They confirmed our concern. We drove to Chris' office to get a blood count. The results come back in about 30 seconds. I watched Chris' face. He buried his face into the door. I started yelling. Tell me! What is it?! What is happening?! His white count was normal, but his platelets were low. Very low. Chris called down to Kosair Children's and spoke to a hematologist. The doctor said tha based on his lab work, Blake probably has something called ITP, idiopathic thrombocytopenia. Im not sure what else I heard, other than it probably was not leukemia. The doctor told Chris that we needed to come to the hospital though. Blake was still sick. He needed a powerful drug to help his blood clot. So here we are. His platelets are continuing to drop and I am more scared, more tired than I have ever been. I feel as if I have lived two lifetimes since Chris looked at the rash. I feel hopeless. Yet I look at my brave boy, who just finished puking, with an IV in his arm and hooked up to monitors, the same monitors that he was hooked up to when he was born, and I feel grateful. For the fact that we were smart enough to notice, for the fact that my husband is a pediatrician, for the fact that we have family here to watch Beckett...for the simple fact that I can hold my baby for another day.