We had a successful transplant last night at 7pm with a room full of doctors and nurses. Giovanni is very popular around here. Earlier in the day they told me they would give him something to keep him calm since he had to lay still for a while but when we were ready to begin Dr. B told me that I needed to keep him calm and not moving around for 15 minutes. Uhhhhh.....is that even possible with this kid? I was a bit stressed but took on the task and entertained him like a clown for 15 minutes while the cells were slowly infused back into his system. He did awesome and the transplant was completed successfully. I took a huge breath when it all was over. We will know in 2 weeks how many cells and the activity of the cells in his system. That is also the time that his platelets, white blood cells and red blood cells will be at their lowest point and the most dangerous time for potential infections and bleeding. Pray for active ARSA enzymes in the cells, a good transfer and a good quantity for Giovanni for longterm enzyme activity. Also pray of his health in coming weeks. The healthier we can keep him the better his chances of getting out by the 45 days (that is the average expected stay). I am shooting for less :) so we can be back together as a family.
I woke up in a myriad of emotions today. I am so overwhelmingly thrilled to wake up next to this sweet, smiling boy with this sing-song noises and sweet face. I really can't believe how well he is handling 3 noisy, foreign language speaking nurses coming in at 6:45am and waking him up. I had a dream overnight with Liviana walking, running and playing like she used to. I have been a mess of tears and emotions this morning over Liviana. The reality of treatment for one child that another can't have has always been in my mind but this morning it has been harder to process. I get lost in the daydreams remembering Liviana as she was prior to November 17th when she stopped walking. I remember when she used to go to the door where Aria and Miles were playing without her and shout, "Daddy's Home" so they would leave the room to go await daddy at the door and she would sit down and play with their toys. Of course, Daddy wasn't home but she knew that would get them out of the room. I remember when I would start getting a bath ready she would run to them and say, "Guys, Bath..."Guys, Bath", running back and forth with excitement. I remember she was always under my feet in the kitchen and I was constantly backing into her. I would also be standing at the counter and feel her little arms wrapping around my leg and look down and see that amazing face looking up at me. I remember her helping me with Giovanni's diaper changes and wanting to help me dress him. It is all to much to sit and think about and that is why I often don't. If I had spent these last 2 months focused on all of these times I would seriously be a basket case right now. God...how I MISS Liviana so much. I don't mean that to sound like she is not here anymore but I miss seeing her live freely. She still lights up a room and brings me tremendous joy but it is hard to not miss those moments from the past. Why did I have to face the fear of losing her at birth, see her fight and succeed against her CDH only to have this happen to her? It seems so cruel and unfair to me. She doesn't deserve this. Why could she not have been diagnosed with the MLD before she was showing symptoms so she could get this treatment. How amazing would that have been for her? Damn, damn, damn....I must stop with the dwelling on the past. It isn't healthy and I need to be able to focus on Giovanni while I am here with him at the hospital.
I am going to head home to be with the kids and Brad today. Tarah will come join Giovanni again for a few hours. I do not know who gets more excited about that, G or Tarah. Liviana really LOVES when I put her in the sling so I am planning on carrying her in the sling most of the time I am home this afternoon. It makes her SO happy and she just melts into me with comfort. I don't see that comfort in her most of the time so it is good to know she gets so much physically and emotionally out of me carrying her in the sling. My sweet, sweet, Liviana. Why, why, why?
Thank you all for continuing to follow our journey here in Milan. It is difficult to go through this process with our children and even more difficult to do it so far away from home in a foreign country. I can't tell you all how much you mean to us.
Don't take for granted a single moment with your children!
Hug Your Babies!
1 month ago