The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD? Ex. 4:11
So this verse tends to make people mad. How could God outright admit that He gives people disabilities and birth defects? How could a God like this be good?
But this verse is an encouragement to me because it tells me that God has all the power in the world...He has a reason for making everyone exactly the way they are, and more than that, He has power to help in every situation if we'll let Him. That was the context of this verse...Moses was complaining that he was "slow of speech" so how could he possibly convince Pharaoh to let him lead the Israelite slaves out of Egypt? But the verse above was what God said in response to Moses' excuse. Basically He was saying "Don't you think if I have power to do all this I have power to help you? And I'm telling you
I will!" God had a reason for giving Moses a speech impediment...and out of it came the rescue of an entire nation. I'm sure it didn't make the problem any easier for Moses to endure...but it made him depend more on God than himself so that God got the credit when amazing things happened as a result. And I think that is the point...God's goodness is never in question...pretty amazing that He would intentionally allow us to be broken sometimes, and whether we get fixed this side of Heaven or not, He still wants to use us in ways we could never imagine so that healing and hope and happiness are the end result when He gets the glory. Or think about it this way...would you rather God just allowed the devil to hand out birth defects? Um. Not me. If there is going to be pain and suffering including birth defects in this world (and there will be, thanks to Adam and Eve who gave up perfection including perfect kids when they chose to sin and that's why Jesus came....), I would much rather have the pain and imperfections in me and my kids be handpicked from God than the alternative, knowing God is good and full of compassion, and merciful and is named the Great Physician and He beat death once and for all, than at the hands of the one who walks around "seeking whom He may devour." I shudder to think what this world would look like if that were the case...
Anyway so, I am holding onto that story this week because, Mason's cornea specialist called and emailed me some pics of Mason's eye ... just his left eye, the worse affected one with the "cornea cloud." He confirmed that it is Peter's Anomaly. This in itself was not encouraging to me when I heard it because it means glaucoma usually comes along with it, and 50% of kids with it lose all light reception due to the glaucoma :( But God is bigger than PA and so far Mason's eye pressures have been great, even off drops, and even when he is madder than a hornet at the doc checking him (which usually raises pressure). He offered a transplant for Mason since the cloud covers 60% of his main vision area but warned that in babies they are more complicated, and with his other issues, it is probably not worth the risk...the operation itself can increase chances of glaucoma and/or retinal detachment, plus the issues with rejection are more pronounced in babies and he did not feel he would benefit a great deal from a new cornea anyway if the vision under it is probably poor too, considering the undeveloped optic nerve/retina/iris (the weird thing is Mason uses this eye more than his other one...and if it's true that this "bad" eye is really his "good" eye, then the doc really doesn't want to do the surgery...he doesn't want to jeopardize whatever vision he may in fact have by operating on it. So, obviously we are deferring on this one for a while. He will get his pressures checked frequently, like every 6-8 weeks for some time, and probably need to see a glaucoma specialist. Oh and it just struck me that posting the pic is probably illegal or something even though it's of Mason...so I will take it off if the doc requests it.
Thursday during this snowstorm we went up to the hospital for a day of more appointments.
There, it was on to the ears. We had his audiology test at 8 am (since the hospital forgot to do his newborn hearing screen, and now it's too late so they had to get a more involved auditory brainstem response test); we refused to have them sedate him for this, so we just said we'd get whatever we could while he was napping. What we got was not too encouraging on the surface either.
He has moderate to severe hearing loss in his right ear; the other ear they weren't able to test because he woke up. The right ear we know has fluid in it so our prayer is that this is the only reason for the hearing loss, and that it will totally return if we get ear tubes. Obviously we are praying his hearing is fine in the other ear...we have an ENT appointment the 31st to discuss our options and to try to schedule another ABR for a more thorough test (he'll have to be sedated this time so we want to coordinate with his ear tubes if we can; pray this works out so we don't have to knock him out 3 separate times - for ear tubes, ABR then tethered cord in the spring.
After the ear test we had physical therapy (they want us to add PT at home once a week for Mason's hypotonia-related developmental delay)-we think he'll catch up soon enough; after all he was in the hospital out of commission 3 months and had 2 major surgeries in that time...he just needs some extra time to make up for it.)
Then we had our NICU followup visits with the dietician, neonatalogist and a neuro rep. They are looking into the possiblility of b12 supplements for Mason and we'll probably have them check his vitamin levels when they put him out for his ear tubes. The neurologist agreed that in light of his latest normal EEG and the fact that some of his seizures seem triggerable/preventable that most likely we don't need to go up on his Keppra right now...the usual ones he gets might not be true epileptic seizures like the ones he had in the hospital were, during withdrawal from fentanyl and phenobarb. We'll keep him on his current dose at least until after his surgery in the spring since we know it'll involve more fentanyl.
We left with about 8-10 more appointments lined up (fun fun). But one of them is for genetics on March 1 so we are getting all our questions in order for that (we have a lot).
Otherwise Mason has been having an okay week...he seems to tolerate the increase in milk volume alright, although his g button has been a little more leaky and red despite the change to a new one...so it may be too much for him still. Hard to say if it's that or if he just needs a new size or still needs the cortisone cream (we were hoping to go off that). So many things are trial and error and guesswork...I'm soo glad God is the same today as He was when He told Moses, "Now go. I will help you...!!" :)
