It's just one of those days. Not a bad day, just one of those days. I feel like writing just not sure what. Could be a really boring entry, could be interesting, you never know where my mind will go.
Yesterday my friend had her baby. I wish I was closer to them. Her baby's abdominal wall did not form/close so when she was born her instestines were exposed. Because of the wonderful technology of ultrasound they were prepared and knew surgery and a stay in NICU was in their future. Amazingly because she was doing so well, they decided to do the surgery yesterday vs waiting til today or longer! Please pray for Baby Matti and her parents.
Another of our friends little baby boy is getting ready for his cord blood transplant which is scheduled for the 15th. He has his double lumen central line placed in on Thursday and they will start chemo to prepare him for the transplant. He's only 4 months old. They live our worst nightmare. Their first son died from this disease that Logan has (www.histeo.org). Because it's known that the parents are carriers they were tested and showed they were not carriers, so they decided to get pregnant and had Kharisma, but those tests just didn't seem to apply to my friends, and Kharisma was dx too. She had a successful BMT and is growing to be a beautiful little girl. She still has challenges that's she is overcoming. Logan was their little surprise and again this disease was in his body. I pray one day the experts know how Gary and Sonia are carriers, so that another family doesn't have to go through so much. They are wonderful parents and as hard as it is to watch their precious children go through so much, they are so thankful for every moment they have them.
Gary and Sonia are friends of such a deep emotion that it's hard to find the words. When Christopher, their oldest was dx he was treated at Walter Reed, which is where we met them when we got to Walter Reed with Jordyn. We became friends. A week before Jordyn was admitted to Children's in DC they went ahead of us for Chris's bone marrow transplant (BMT). We went through the transplants together. Sadly Christopher never left the hospital alive. A month exactly after Jordyn was discharged, I got a call in the early morning from Sonia telling me that Christopher was going to die that day.I called our WR nurse as requested by Sonia, to have her go to Children's. A couple hours later, that same nurse called me and said they wanted me to be up there.
For some this may seem odd the way I'm about to state this, but I was honored to be allowed to be in that PICU room when Christopher's heart stopped. Such a precious moment to experience a little precious boy who fought so hard to live, leave for Heaven and they allowed me someone who was a stranger only a year ago, to be with them, Gary's parents, a special dr and nurse from Walter Reed, and them. I watched as Sonia held her little boy in her arms and as the priest gave Chris his last rights and at the moment AMEN was said, his heart stopped. GOD was in that room at that moment, gently taking that precious baby boy from his mommy and daddy.
When we found out Jordyn had relapsed just 2 weeks later, they were there for us. They loved Jordyn and us. In their own sorrow they cared for us. When Jordyn died, Sonia came over, Gary came later. Our lives are forever bonded. We shared our first born children with each other, we loved each other's first born so much, and we were both there the day our first born's died.
Sonia has met Jacob, but not Jackson yet. I haven't gotten to meet Kharisma or Logan, but look forward to the day I get to! We live in the midwest and they on the West Coast, but one day we will get out there. I can't wait to hug my friends again and kiss those beautiful children of theirs.
Well, I guess I got out what I needed for now. I may post something else later, we'll see how I feel.