One in a Million: Diagnosis Confirmed


 This was a particularly emotional and hard week. That sweet, healthy looking baby boy right there had his diagnosis confirmed. We got the final genetic testing back and he is the carrier for severe congenital neutropenia. Literally 1 in a million people have this rare blood disorder that cannot make the first line of defense of your body's white blood cells, also known as, neutrophils.
 Normally, I would be sharing some silly comment about Cai's face here, but  instead I will tell you that Judah also failed both hearing tests in both ears at the ENT. It felt like 1 more thing added to the plate of things to figure out. Failing doesn't necessarily mean he can't hear. He may have some hearing loss, but there are a lot of variables as to what could have prevented from him passing. And he didn't fail terribly. The ruptured ear drum and the strong IV antibiotics could be to blame. It also could have been the way the tubes were situated in his ears or fluid. We will be monitoring it, of course. Judah also developed an umbilical granuloma(which completely freaked me out, but is normal. Then, it got infected. Not normal. So we are on antibiotics again. I too got antibiotics because I got mastitis.
 What is amazing to me, is that despite everything going on and the crazy that is happening around us, each day actually looks like this. Two brothers being sweet and adorable. Pictures I want in my mind forever! And even though it is so hard. I see pictures of God's grace, written all over my children's faces. Beautiful dripping with mercy, grace.
Each day is a day to thank and PRAISE God for Judah, Cai and B (who through all this we are still fostering).

Please be praying for Judah's Absolute Nuetrophil Count (ANC). It has stayed at ZERO week after week. We need it to be 1000. We went to daily shots last weekend. So far he has not responded to the nuepogen shots, but now that genetic testing is back, the drs can figure out his dosing better. Please pray that we will start to see an increase NOW! Judah has a lot of other white blood cells, and everything else is normal, so those are all good things.  Continue to pray protection over his health that he would not get more infections in the meant time. We are so grateful to be home-bound verse hospital bound.

Pray the the stress of all of this would not make us short towards one another in speech. We have noticed Cai having potty accidents and B has been so shuffled between family that she is having a hard time adjusting back to us and us to her, so prayers over all of that.

 Prayers as we are going to the dr each week to get blood drawn. And prayers that we will seek God through all of this. We are worn out and need people praying over us. We are so grateful for Judah's life, a constant reminder to give God glory and Praise, what his name means. Thank you for your prayers!

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