5 month old tantrum?

Sorry for morning post. I was so exhausted last night. This is from Thursday night and Friday during the day

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   Amazing. I slept for 3 straight hours. I know it’s not about me, but if I slept you know who else slept? Yes, you guessed right. Mac! Now he managed to sleep through a very heavy pee diaper, which is what woke me up. How can that be? Well he was sleepinyg right next to me that’s how. I know co-sleeping. Well let’s just say I have been doing a lot of that over the past month. You know how a baby kangaroo sleeps in the pouch of their mama, that has been us. Totally connected. I mean no wonder he is having meltdowns.

  Have you ever been without something or someone that you would just rather not do anything until you got that thing? Well that is Emerson. I say that lightly because you see I have been exclusively with him for the past 5 months. Now I would like to say I’m all he knows but so many people have loved on him so he knows. But today that poor kids has wailed in both my mother-in-laws  and sister arms.

I mean it’s hard to say why, but he scream cried: mouth open, eyes open no tears searching the room for me. I dare not make a sound or be seen because he will have a melt down. He is currently screaming I’m sure, as the nurses change his port-a-cath dressing. 

*I apologize but here is a short video explaining what it is

           https://youtu.be/xVebbriPQAs

Medically speaking he was a superstar today. I mean despite the tumor lysis, he rocked out during both sessions of chemo. I might want to say first ‘thank God’. I think we have a good process of pre-medicating which has helped immensely. That and he is being breastfed simultaneously. 

His sodium was lower than desired but no symptoms, and he would get a platelet transfusion again, but no need for blood.He has managed to naturally diurese (increased urination) of the all that extra fluid that he had managed to third space. 

Some of the genetics are back, but we will still be waiting on some until another week. It was shown that he has  MLL mutation...I plan on finding some more information about this. But what I have so far

  * Mixed lineage leukemia is characterized by the presence of MLL fusion proteins that are the result of chromosomal translocations affecting the MLL gene at 11q23.

We are following a current protocol that is being done at St. Jude. Though I know the grimness of the facility, I also know all the hard work they do for children with cancer. As my specialty is not in blood/cancer disease processes I feel like there is going to be a high learning curve that I will be working to tackle.

       

He sat in his rocker, while I read to him from the bible. We are in the book of Daniel, fitting as it’s his middle name after my paternal grandfather. Daniels faith in God and his desire to not disobey.

In Daniel chapter 3, the king nebuchadnezzar, desired that when any of a set of musical instruments were played that everyone would fall down and worship. Well Hananiah, Mishael, Azariah (from the tribe of Judah) they were not having that. Well the consequence was being through into a burning furnace. Get this they weren’t afraid, because they figured that their God was being enough so save them, and even if He chose not to they were not going to worship that gold statue. 

Wait til you hear what happened...

Father God thank you for a day that was eventless. That our precious son didn’t suffer through pain. That your allowing the medicine to work. Thank you for the team of medical personnel that are tending to his needs and his mama. Lord we love you and we pray that Emerson’s life will glorify you. Amen