Today has been a very difficult day, as our little guy can't see anything at all. We know so many people are praying and we again are asking for prayers, specifically that Jax's vision be restored. There are so many possibilities as to why our little guy cannot see, and only time will reveal the cause and whether his vision will be restored. Within the medical world, Jax's loss of vision could be the result of the high amount of chemo drugs that went in his eye, it could be that his retina detached again. Both of these could heal on their own, both could respond to other medical procedures or both could not respond at all. Only time will tell, the amount of time not being clear. We however serve a God of MIRACLES and we are asking Jesus to restore our little boy's vision.
It's hard to put into words what my heart felt when Jax first said, "I can't see." Today our little boy operated as if he was blind, as he literally could not see anything. It is remarkable for me his mamma, of how my mamma bear came out so to speak as I wanted to help him in any way that I could. I was not a puddle on the floor (that might come later, I'm fairly certain), instead I tried to explain things to him to help him navigate his world. He loved it when I read him stories. I read him books that I had read many times before and he intently listened. He didn't look at any of the pictures as he literally can't see anything, instead he stared off in the distance, his heart at peace during those moments. Other moments were full of frustration and tears. Other moments were full of determination on his part. He is a JOY, with vision or not and I praise my Jesus for Jax.
This is definitely harder for our jewels to process and they are experiencing some big feelings. Please pray also for protection around their hearts and that God would cover them with peace.
There were some pretty big changes today with Jax's chemo plan, the doctors deciding not to do the inter-ocular chemotherapy. It is still very much a possibility for Jax, but they are going to give the current three drugs at least one more round before going to that next step. We definitely had mixed feelings about this, although honestly I have to say I was relieved.
And then when Jax barely slept last night, I was thankful. And when he woke up this morning, not himself, throwing up, and not being able to see; I was again thankful.
The inter-artery chemotherapy process went well, and the day yesterday in ICU went well. We had my FAVORITE nurse of all nurses again, and we've had plenty of awesome nurses. Yet this nurse is my favourite, she just really goes over and above, is so positive and friendly, and adores our Jax! She is a GIFT!! Thank you for everyone who has been praying.
We are home and are taking each day as it comes. We will see what tomorrow brings.
We truly are so thankful for all of you who are praying. We are genuinely thankful for an amazing team at Seattle Children's. We are thankful for grandma who is here this week loving on our jewels. We are thankful for the friend who had Jase and Matteus spend the night last night. We are thankful for the friends who are picking up and dropping off our kids these last couple of days. We are thankful for the sweet friend who brought dinner tonight and the one who is bringing it tomorrow night.
We are thankful for the Creator of the Universe who is not surprised by any of this, and who loves our Jax and us with a lavish love, who never leaves us or forsakes us, but instead walks with us through our hard.
One of the songs that gets me through the really difficult moments ...
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