Naomi was so excited to see everyone this morning.  When I entered for rounds without them because it was too early to wake them, she said, “you actually walked in here alone?  You didn’t bring me Daddy and my sisters?”  It was rather hilarious how excited she was to see them.  Right after rounds I went back to get them.  It felt like it took forever to get a baby dressed and ready to go!  Sinead did NOT like the cold.  She is definitely a summer baby.  It was pathetic how she whined as soon as we got on the “Arctic bridge” connecting the RMH and the hospital.  Aaron and I were cracking up about it because it was almost 30 degrees.  We didn’t think it was as bad as it could get.  I’d certainly had colder the weeks before!

This is the point when I start using a lot of numbers because our lives are revolving around them. The main three values we are looking for is 1) hemoglobin, 2) platelets and 3) white blood cells.  All white blood cells are not alike, so #3 added the clause that we  want her neutrophils, or ANC, to be high enough that it doesn’t look like the lymphocytes are rejecting the transplant.

On Wednesday, Naomi’s hemoglobin dropped to 9.2 (previously 9.5) and platelets dropped to 20 (previously 32). These values dropping is not concerning though because she had transfusions a few days ago and those cells will die off within a few days which is what we’re seeing. The point is that they are not dropping as much as they used meaning that we are seeing production from her marrow (Micayah’s marrow).

Although 20 was the threshold for platelets, she will not be getting platelets today because her Dr changed her platelet transfusion threshold level to 10. He believes she is on the verge of engraftment and he wanted to give her body a chance to make platelets by herself rather than transfuse. After weeks of no white blood cells (WBC), her WBC count was 0.1. If the WBC level continues to rise, Naomi can be released as soon as Friday. She will then have daily clinic appointments.

I always question what to post publicly…. her doctor is really wanting to discharge her on Friday. He wants to see these white blood cells continue to increase Thursday and Friday and then let her loose. He feels that she looks too good to be in the hospital. They are not set up for outpatient transplants but some transplant facilities do offer that. He said, “with this Mom and this kid I am comfortable sending them to RMH with daily clinic visits and monitoring.”  My training and Naomi’s proven ability to cooperate has won us a respectable reputation among the staff here. So we really are just watching the numbers right now.

When I finally got there with Aaron, Naomi claimed his lap and sat with him for hours.

Cait and Sinead had fun riding bikes and vehicles and walking around.

 

Her activity levels on Wednesday were unbelievable. She and Aaron played volleyball for a long time seeing how many times they could hit the ball back and forth. The highest record was over 50.

So then they were trying to volley using only their heads. That record was 5. It is remarkable actually that Naomi’s platelets didn’t fall more than they did.

She also played in the hallways a lot – mostly kickball with the beach ball; Sinéad and Caitríona rode bikes and we did plenty of walking. In fact, we had been the hospital for almost 3 hours before Aaron even saw Naomi’s room. Sinéad and I returned to Naomi’s room before anyone else. She fell asleep with me. I slept for about an hour. She slept for a little over 4 hours. It was a little slice of heaven for me.

In the evening we watched a video all together in Naomi’s room. Caitríona fell asleep snuggling with Naomi in her bed. There were so many precious moments in the day and the joy the girls had from seeing each other was amazing to see.

We started playing the game of Life.  Aaron and I made to the marriage section at the exact same time.  That was awesome.  We joked that it was a good thing we had two vehicles from the start.  I was planning to take the 2 blue pegs and he could fill his with the 5 pink.

Naomi was so happy to share things with Cait.