Two months have passed since our last update, and quite a bit has happened. There have been many things that we didn’t know the meaning of until we got the latest round of testing completed, and part of the delay stems from those tests getting pushed back from mid November until just yesterday, December 9th. As with most things of this nature, the more things we learn, the more we realize we don’t know. The more specialists and neurologists and neurosurgeons that I talk to, the more certain I become that we’re all just sailing along in the dark when it comes to the human brain. It feels like looking at medical manuals from the dark ages when we had only the most rudimentary understanding of our bodies.

Over the last two months, we’ve been working with several different specialists on different aspects of Zeke’s development, focusing especially on his physical muscle development and his hearing. There have been some areas, especially in the last 3 weeks that we’ve identified areas where Zeke is behind and also seen some good improvement in those areas when we focus on them. He’s showing some real stiffness in certain parts of his legs and right side, and he’s behind in some basic physical development areas like rolling from his back to his stomach.

We haven’t been able to really put everything together in a concrete way until we got the results from yesterday’s MRI and had the discussion with Zeke’s Neurologist. When Zeke was first born, the initial MRI showed several things; a large bleed area in his left frontal lobe and tens of smaller bleed areas in different locations throughout his brain. The initial diagnosis was that he was born with Cavernous Anginomas, the small defective blood vessels spread throughout his brain that carried the potential to spontaneously bleed into his brain. The consensus was that one of these areas had hemorrhaged as a result of his somewhat traumatic birth (with the full knot, etc) and caused the large bleeding in his brain at birth. This meant that not only did we need to face the initial repercussions of the bleeding, but we also would face a very uncertain future with the likelihood of subsequent bleeding events.

Several months after his birth, we had an initial consultation with a neurosurgeon – when they have advanced warning about children and adults who are likely candidates for needed neurosurgery in the future, they like to be as familiar with the case as possible before surgery is required. During this consultation, the neurosurgeon expressed some interest in a second possible explanation – a scenario that involved many small spots of bleeding along with the large hemorrhage caused by the hypoxic state during the birth from the cord knot. At the time, she refused to speculate on which theory was correct – there was an equal possibility that either one was our situation. Her solution was simple – at 6 months, we would conduct another MRI and look at his brain. If the anginomas were present, they would still be there; we would have an established history with the cavernomas. If they were absent, it would show that his body had absorbed the small spots of light bleeding and that they had not bled since – demonstrating that it was a single-event bleed and not an ongoing medical condition. Much of our focus and direction moving forward would be determined by this diagnosis – if he had an ongoing condition or if it was stable.

The largest concern we had yesterday was the general anesthesia that Zeke had to go under in order to complete the MRI. It’s scary to put anyone under, but when that person is less than a year old it gets particularly worrisome. With the neurologist and MRI unit an hour away, the hospital visit was an all day affair beginning at 5am and not ending until dinnertime. I hadn’t been in a hospital since his birth, so it was a bit of a flashback as we spent the day in waiting rooms and wandering hallways. We were very fortunate to be able to meet with the neurologist yesterday afternoon, just a few hours after the MRI images were taken. Zeke made it through the scan without any problems and bounced right back from the anesthesia without any problems – a big relief.

When we were finally able to sit down with the neurologist, it was tough to look through the pictures from the MRI. While we knew we were almost certainly looking at one of the two outcomes, it was easy in the back of our minds to leave that wishful third possibility open – that it was all a bad dream and that his brain was perfectly normal. It was also easy to compare the outcomes and declare one of them “good news” and one of them “bad news”. As it turns out, it’s all just hard news.

One bit of clearly good news is that Zeke does not have Cavernous Anginomas as we first were told. As we scanned through the pictures of his brain, only three or four small dark spots remained where before there had been closer to forty or fifty of them. This means that the hypoxic state caused by the knot in his cord caused pinpoint bleeding throughout his brain – almost all of the spots of bleeding had been reabsorbed and were gone. This alone is outstanding news, since Zeke’s condition is static – there is no concern that he will experience any further bleeding in his brain, and his current state should not worsen. Obviously this means that we can spend our energy working with the capabilities and resources that Zeke has rather than constantly preparing and watching for another hemorrhaging event. It also means that we won’t “loose” him any further than he is presently – that is to say, he’s not in any specific danger of growing older, learning to read and then experiencing a brain-damaging bleeding event and loosing capabilities that he’s gained. Obviously that’s good news, and has a pretty dramatic impact our family’s future – it’s not nearly as important now where we live, how close we are to super-specialists, etc. Not to mention, we can take a breath and just focus on Zeke and not on what may or may not happen tomorrow/next week/in twenty years.

So – that’s good news. We hadn’t, however, fully wrapped our minds around the alternative. We’d been ready for the worst news, but hadn’t really appreciated that our choices hadn’t been good or bad, they’d been bad or worse. So now worse is out, which is great – but we’re still wrestling with what we do have. Zeke has had a large bleeding event in his brain, and it is already clear that it’s affected his abilities. This means Zeke has Cerebral Palsy, which is an unspecific term for a whole spectrum of conditions that involve damage to the brain and impaired physical capabilities as a result. It also means that we still have relatively no idea what Zeke will be like as he grows older – we can guess at some general things like he’ll likely struggle with weakness and coordination problems with the right half of his body. Still, any positive signs that we have now are only positive signs of what they are – that is to say, Zeke can clearly see us and recognize us and responds to us. That’s a great sign, because he has visual acuity and can recognize and remember us. But it’s not an indicator of anything further – it doesn’t mean that he’ll be able to learn how to read or comprehend algebra or even process and use language. It doesn’t mean he won’t, but it doesn’t mean that he will either. His current physical capabilities are good, although he is behind developmentally – we’re part of an early intervention program which will prove to be invaluable for his progress. To be able to help him with physical and speech/language therapy this early is going to be very beneficial

So here it is in a nutshell – we don’t know the impact of his brain damage. We’ve seen the image scans and he’s missing about 10% of his brain – the area where the bleeding occurred is now a large fluid pocket, and there’s no replacing what’s not there. It does extend down into his stem and therefore will likely interfere with the transfer of information between parts of the brain that are not damaged and other parts of his body. We will basically be working with him as he grows up and as soon as a problem manifests itself, we’ll address it. That may mean that we’re doing speech, hearing and physical therapy for the next 5 or 6 years and then discover higher cognitive issues. It may mean we’ll be fitting him for leg braces in 16 months. We just don’t know.

We do know that he’s stable – his condition and brain damage won’t (barring a totally separate event, obviously, same for all of us) get any worse and his capacity and function won’t degrade. This is also true for his hearing – it shouldn’t be a progressive loss, so the hearing he does have now should stick around. We also know that he’s started beginning problem solving, which is good; our physical therapist indicated that he’s already showing that he’ll work through physical difficulties and find a way to get what he wants. Apparently Cerebral Palsy patients who face physical problems do much better when they have the ability to work through the problem solving aspect of “how do I get my body to do what I want”. So that’s encouraging.

We also know that we can finally focus on what we have; all of our energy now goes into making sure that we’re there to respond to his development as further issues develop. We certainly did receive good news yesterday, and we’re very excited that we can take a deep breath and relax about ongoing catastrophic medical events. It has been tough to finally grasp the reality of having a child with severe hearing loss and significant Cerebral Palsy, especially in the face of not knowing what the future holds for his capabilities. We’re seeing problems already, but we’ve also got plenty to be thankful for – plus he’s about as cute as they come. The next three to six months are going to tell us quite a bit about his mobility and physical ability in the coming years – after that, we’ll just have to see.

We’ll do better with the updates – the last two months have flown by and I expected to have more /bigger news earlier than today. We’re not scheduled to have regular MRIs or anything like that – so updates should be calmer and less significant, at least for the next few months. Thanks again to everyone for your continued prayers and support – we’re very happy to be moving forward now with what we have and giving Zeke the love and support that he needs.