Ariana & Zeke

Thanks to everyone for your patience on the update here; we’ve fielded quite a few phone calls this week, which we certainly appreciate.  I’ve been trying to get this post done for a few days now, but things have been crazy between a full work schedule, full doctors schedule and getting into a rhythm with Zeke.  Starting the week off sharing at Church was tough too; it was wonderful, but sucked about a weeks worth of emotional life out of me.  I should have it posted tomorrow, hopefully – no later than Sunday afternoon for everyone who wasn’t there…

We’ve had two big appointments this week – the hearing test was put off until Sunday due to some equipment problems; it will be at 9am on Sunday AM if you’d like to be praying at that time…

The pediatrician visit was somewhat discouraging; over the course of a week, Zeke only put on one ounce of weight.  They were expecting more like 5 to 6 ounces, so there is some concern there – he’s eating and pooping as he ought to be, so we’re not sure what’s going on.  We’re scheduled to return for a weight check on Monday – we’ve also put him on a three hour feeding regimen, which will hopefully do the trick.  If he hasn’t put any more weight on by Monday, step two involves moving him back to bottles.  We can live with that, although we’ve obviously been working hard for two weeks now to get him off the bottles.  Step three involves a feeding tube, which is obviously a horrible thought at this point.  So, pray that he puts the fat on his little bones.  We’re not sure what the issues is, it shouldn’t be related to his condition or prior injuries.

He also didn’t make any progress with his oxygen – he didn’t regress, which is good, but they didn’t drop him anymore.  We’d like to get him off, obviously.

We also had the visit with the neurologist on Thursday.  Again, we were affirmed in how good he looks compared to his MRI; the doctor told us he had been looking back over the scans before we came and was impressed not only by his condition but also by his lack of seizures so far.  There are still somewhat even odds that he’s had some seizures but they’ve been so subtle that we haven’t noticed.  He did tell us that if they were serious at all we most likely would have picked up on it.  His reflexes were good and he appears to have use in both of his sides equally.

He did brace us for the fact that even though we could have already been seeing evidence of physical problems related to the bleeding, we probably won’t begin seeing signs until five to six months when he begins some more serious motor skill development.  We’re already getting set up with a physical therapist so that we can keep his muscles toned and limber for when/if the day comes when they can begin specific muscle/brain retraining.  That process will be much more difficult if he has had muscle atrophy between now and then.  So, we’ve got a four week old getting ready for physical therapy.

So it’s been a long week.  It’s tough because he does seem normal most days, once you get past the lump on his head and the oxygen.  Then we have these flashes of reality that are tough to swallow… and we had three or four of those this week.

We’ll know more about the next steps after we meet with the neurosurgeon in early July.  She’ll sit down with the neurologist and compare notes and we’ll all discuss the way forward.  In the meantime, it’s a waiting game for him to manifest symptoms.  We can’t do much to treat him until we see exactly how he’s going to respond.  Apparently the brain is still a major mystery to the medical community.

I’m getting a better understanding of James as we go on… the testing of our faith perfects our patience which matures us as Christians… I clearly have miles to go on the path of patience.

Blessed is the man who endures trial; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.  James 1:12