Apologies for the week and a half of silence!  Things have been going well, we’ve mostly just been continuing to get into the groove of regular life.  Zeke finally started finding a nighttime routine a few days ago, and we’ve been trying to catch up on a month’s worth of sleep depravation.  He’s still up quite a bit at night, but only for shorter periods; now if we could just get the other kids to sleep past 6:30!  We’ve made a few trips out of the house finally, once to church last weekend and again for a trip to the store – it’s been good for Jesi to leave the house for something other than a doctor’s appointment.  

We had two appointments this week, our first visit with the physical therapist and our first visit with the neurosurgeon.  When the neurologist first told us to begin physical therapy, we were somewhat skeptical; after all, he’s 5 weeks old and seems to have full mobility.  When our pediatrician wholeheartedly agreed, we took it a little more seriously – you’d think we’d do whatever the neurologist told us to do, after all, he is a neurologist.  That’s up there with rocket scientist.  But we’ve known our pediatrician for quite a long time now, and we’ve learned that when he thinks something is serious to sit up and pay attention.

The visit was actually quite helpful – apparently there are a whole host of problems that could be looming on the horizon that we can’t anticipate for another 4 to 6 months.  Starting physical therapy now will give us a healthy headstart on any of those issues – keeping his muscles toned and flexible now is a big deal.  They also noticed that he has a real tendency to favor turning his head to the right side – he can and does turn it to the left, but if he has a choice, it goes to the right.  We’re keeping an eye on this and purposefully moving him back to the left, also trying to stimulate him from that side so that he independently turns his head that direction on his own.  They’re not worried yet, but the want him to develop “symmetrically”.  We’ve got a few exercises to do with him every day and we’ll be going back in a couple weeks to check back in. 

The real news comes from the neurosurgeon.  Frankly, we weren’t expecting much of anything from this visit – we’ve met with the neurologist, and the plan was to keep the neurosurgeon in on the loop in case some of the cavernomas create larger issues in the coming months.  They were supposed to talk and we were supposed to meet just to keep everyone on the same page as we waited and moved forward.  So, we were a bit blindsided by this one.

We sat down with the doctor and went through the charts and discussed some of the history… then we were told that they have a second theory and are now questioning the original diagnosis of cavernous anginoma.  It’s not off the table, and in fact they won’t even give me a ratio of possibilities – so they’re very clear that they’re not saying he doesn’t have the anginomas.  But they’re introducing another possibility.

Apparently for the anginomas to show up on an MRI, there has to have been some level of previous historical bleeding – even if they are present, the spots that are appearing on the MRI need to have bled at some point in the past.  This makes diagnosis in a infant a very, very rare occurrence, since the likelihood of even minor multiple bleeding incidences at that age are slim.  Because of this, the neurosurgeon wants to hold a second possibility that he doesn’t have cavernous anginomas at all, and that with a third MRI taken a few months from now would show that the spots are gone.

Sounds like fantastic news, but it creates an alterative scenario that is as bad, if not worse than before.  Well, at least different.  The spots on the MRI that were diagnosed as cavernomas were in fact there – which means that there was small bleeding in approximately 15 areas as well as the large bleeding in his upper left brain.   So, something caused this bleeding – even if they’re not cavernomas ready to rupture and bleed in the future, they’ve bled.  The suspicion is  that it is directly tied back to the hypoxic state caused by the knot in his cord.  Apparently there’s a condition (this is all still pretty new to me, so I’m not hip to the lingo yet – forgive me) whereby the stress of the knot and the lack of oxygen can cause spontaneous spot hemorrhaging in various locations throughout the brain.  Since we strongly suspect that he was in such a state for a  period of time prior to the delivery (you may remember the suspected nerve damage that has affected his hearing), it seems to hold up to what we know happened.

So the good news would be that we’d be back to the original fears – the damage was done at one point in time and the likelihood of further bleeding and therefore further damage to his brain would be significantly less.  The pressure of waiting around for his next bleeding incident would be gone.  The likelihood of seizures would not be gone – anytime there is any kind of damage to your brain, your risk of seizures skyrockets.  We know he’s had bleeding in many different areas, any of which could now be very prone to the short-circuits that cause seizures.

The bad news would be the impending damage that has been done beyond the scope of what we’d originally thought.  In the cavernous anginoma model, the various spots wouldn’t mean damage – simply areas where he has a propensity to bleed in the future.  We’d have one bleed location with at least localized damages that we could work with.  Under the hypoxic model, those spots were bleeding areas that were caused by the lack of oxygen.  It points to a much more sweeping level of damage.

They even took away our encouragement at his progress so far – apparently everything he’s doing right now is centered in the brainstem as it connects to the spinal cord.  So while it is encouraging that we’re not seeing any specific negative effects so far, it apparently means almost nothing.  We’ll know much more in the next six months as he begins development and we can start tacking milestones, but in the meantime we really have nothing to hold on to.  We kind of pushed them to give us a range, starting with “everything could be fine, right?” but they wouldn’t even start us off there… They used words like “may never walk”, “may never talk” etc.  So that was great.  There are, of course, many things that can happen between now and then.  Apparently his final state is 100% determined by how is brain is able to make the connections as he develops.  We were told that the best (and really only) thing we can do for the next few months is play with him and interact and stimulate him as much as we can while his brain makes those developments.  Apparently this prognosis stands for the anginoma model as well, but the possibility of damage seems greater if the knot cut him off as badly as it seems it might have.

 So, we’ve been told that we just have to wait and see “what we have to work with”.  They’ve scheduled an MRI for when he reaches 6 months; at that point, they’ll be able to see if the bleeding from his first MRI is still there (showing cavernous anginomas) or they’ve been carried away by the brain fluid and are gone (showing the hypoxic state).  In the meantime, we get to wait, watch for seizures and make sure he doesn’t favor the right side too much.

It’s been a long few days – we’ve really been encouraged with his progress so far and he’s becoming more and more enjoyable as he finds his rhythms… but it feels like the rug has been pulled out from under us.  Again.  Probably not for the last time.

Keep praying for us – we need it now just as much as we ever have.  The things wrong with our boy are so small, it just seems like an easy thing for God to fix.  We’re praying for it, but I’m still personally convicted that the things God will do with our Zeke don’t have to do with his miraculous story of healing.  Any prayer warrior out there is welcome to prove me wrong – but don’t forget to pray for the continuation of His will, not just for Zeke but for our whole family. 

We still can’t thank everyone enough for the help and support – I don’t know how we would have made it this far without all of you.  If you haven’t gotten a personal thanks or reply from us, it’s an accident; we’re trying to keep up with everyone, but the responses have been so overwhelming. 

If you don’t hear it any where else, Thank You!

P.S. – we’ve been lazy in getting the CPR classes scheduled. We’ve been jolted back into action; look for some dates out later this week! Please attend if you can!