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.

Quite a bit has happened in the last few weeks, although it’s been almost entirely family related as opposed to Zeke-related. We did have a routine doctor’s appointment earlier this week and the news was great – Zeke is growing well and is very healthy, including his head circumference. That’s an important metric to follow over the next few years, since dramatic brain damage will cause the brain to grow at a slower rate than normal; so if his head circumference is keeping pace with the rest of his growth, it’s a really good sign.

He’s doing very well with his hearing aids – they’re fitting better since we got his new inserts (he grows out of them at an astonishing rate right now) and he really lights up when he has them in. We had a long meeting with the local state program coordinator for deaf children – up until age three there is a fantastic early-development program to help us integrate and get involved with the Deaf community. We’re finding out that there is a big difference between being deaf and being Deaf; the latter signifies an incredibly tight knit community, encompassing the hearing losses of most ranges all the way up to profoundly deaf. Zeke falls solidly in this group, and we’re really excited to start getting involved (once we make it through the winter).
Our pediatrician reinforced his earlier contact mandate, and we’re finding a rhythm having spend a full month now in relative isolation. So far so good, although we’ve begun making “heeeere’s Johnny” jokes as the first snow of winter begins to fall. We’ll either come out the other end this spring a very close family or our classical nuclear family will become just that – nuclear.

We’ve also found a groove in our daily lives after the chaos of resigning from my “real” job to try and make our business fly. It’s been a little crazy and we’re defiantly not out of the woods (or really near the edge of the woods, for that matter) but we’re having a blast and it’s been incredibly refreshing to take a risk that we’ve chosen, rather than the long summer of things happening to us. We’ve got time before failure would force me back into a corporate job, but we’re doing everything we can to succeed on our own. You’ll probably see some of our ventures linked from here over the next few months, but since this is predominantly about Zeke, we’ll do our best to keep it that way.

Thanks to everyone for the continued support! We’d never have guessed 6 months ago where we’d be today, but God is faithful and he hasn’t failed us yet.

The best baby sign language videos!
As you all know, we’re beginning to sort out the future with Baby Zeke and his health, but in particular at the moment (since it’s all we know for sure), his hearing impairment.  Despite the fact that his hearing can be improved with hearing aids, we’re still solidly in the deaf and hearing impaired community.  As such, we’ve begun the process of learning sign language!

We’ve had tremendous success with a series of videos produced by the Coleman family, pictured to the left.  We discovered their story only after we began using their videos – it resonates with our experience very well as their business grew out of a need to respond to the birth of their deaf daughter.  Things then accellerated with the birth of their second daughter, which you can read all about in the “about us” section of their website.

Their compelling story aside, the product that they have produced has been fantastic for our kids.  Zeke is obviously too young to begin signing yet, but the other three kids have been fascinated and enraptured with these videos.  I have been amazed to watch their signing vocabulary grow over even just the last two weeks as the signing begins to sink in.  Even Jed at two years old jumps up and down and screams when it’s time for Baby Signing Time; he’s using signs almost as much as he’s using the spoken word.

The most exciting thing is that as Zeke grows and hopefully begins to comprehend communication, our other children are poised and ready to teach him their new language.  It’s also becoming a regular part of their lives and won’t be a new change or adaptation when Zeke gets older – their signing skills are already in place!

I want to also be clear on the benefits of signing in young children even absent any hearing or speech impediments.  It has dramatically cut down in the frustrations that Jed (at 2 yrs) experiences in his  efforts to be understood.  He regularly comes upstairs and signs “hungry” or “thirsty” to Jesi.

We’d really encourage everyone with young children, hearing or otherwise, to check out these videos… They’re having a big impact on our daily lives and we’re excited to keep learning with the kids as they grow!

This is an open letter to our friends and family… if you’re reading this blog, you qualify!

Family and Friends;

As you are all no doubt aware, this has been something of a crazy year for us.  The events surrounding the birth of our fourth child, Zeke, have made us question almost every aspect of our lives over the last three months.  If you’re not familiar with Zeke’s story you can read all about it, starting from the bottom,  at:

http://thebabyzeke.com

We questioned our purpose, the direction of our lives, even what tomorrow would bring us.  Some of those questions were made more urgent last month when a reassignment at work meant more hours for less pay.  Critical Response LTD and it’s website, CriticalResponseFirstAid.com are the realization of months of soul searching, purpose seeking and life redefining.

A little bit about the purpose – the medical experiences we’ve had with Zeke have opened our eyes to a lifestyle we’d previously ignored as young, healthy people.   We’ve come to appreciate how delicate life is and how many things can go wrong in the blink of an eye.  We’re still working on entirely rejecting the fear and living boldly, but we’re appreciating that part of living life to the fullest means being equipped to respond to the emergencies that we all will inevitably face.  If you’d like to see numbers, feel free to visit the American Heart Association’s website; Cardiac Arrest is 90% – 95% fatal.  Utilization of an AED in under four minutes drops that mortality rate to just under 50%.  Since Cardiac Arrest can happen to any one, regardless of age or heath, you can begin to appreciate why we are sharing the goal of the AHA – to make AEDs as common as fire extinguishers in public places.

A bit about the business – first off, I am not asking you to buy anything.  Most of you do not have any requirement for an AED in your house or the type of first aid products that we offer.  Without some extenuating circumstances (such as we have in our house with Zeke) our kits are above and beyond what the average family needs to be safe.  But each and every one of you has influence in a highly populated place – each of you goes to college, has children in school, goes to church, works in an office building, knows the jobsite safety coordinator, works with foster children, owns your own business…  The placement of AEDs is quickly becoming commonplace in these environments – speak up and let the people you love know about the resource that our company provides.

Also, you may wonder if, given the economy, this is the best time to start a business.  As we weighed the path before us, we eventually realized that not only should we start this company, but this was the best time imaginable for us to start it.  We’ve found a cause that we can get behind – not only financially, but morally and spiritually as well.  We firmly believe that while the events of the last six months each carry their own significance, their sum has brought us to a purpose – a purpose for our entire family.

I’ve touched briefly on what we’re asking from you – nothing more than spread the word.  Be our fans; forward this to your friends that I don’t know.  Tell your family about us.  Watch for our updates and keep supporting us emotionally; we’ve discovered the depth of our friendships with all of you through the last few months – we’re still going to need it!  Thanks again for everything and tell everyone about us!  In case you are interested, here’s a discount code for 10% off; feel free to give it to anyone you think will use it!  Just plug it in at checkout – Friends10

Thanks again and God bless you all!

-Dave & Jesi

http://CriticalResponseFirstAid.com

Well, It’s been a long few weeks.  We’ve been struggling with some job-related things for about a month now, unfortunately the pay cut is now official.  I’ve been working like a madman on a separate project that I’ll be unveiling later this weekend, but for now here’s the latest on Mr. Zeke.

First, the good news!  Zeke grew 20 ounces in 28 days which is tremendous.  He’s also been very responsive and loves to interact with us; his smiles are getting bigger all the time and he’s experimenting with new expressions.  He loves to play, especially after he’s woken up from his nap.  The hearing aids are working very well, he wears them for a couple hours two or three times a day.  When he’s had them in for a while or when he’s tired they become a bit overwhelming for him.  When he’s rested and ready to play, he loves them!  The bouncy seat with the music and flashing lights has become a favorite, especially when he can hear the music.  He was refitted for the part of the hearing aid that goes into his ear today; then we have no more appointments with the ear folks until the ear molds become too small for us to work with.

We had a monthly check up with our pediatrician today; Zeke is looking good and growing well, still hitting his developmental marks on time.  That continues to be a relief and it’s very exciting; he’s playing with us and eating well and starting to get a real rhythm to his sleep at night.  So, as far as Zeke goes, Zeke is doing very very well.

Then the bad news.  We had a long talk with our doctor about the next few months as we move into the winter season.  I want to preface this by reminding everyone that we’ve developed a tremendous relationship with our kid’s doctor over the last six years that we’ve been seeing him.  It’s so hard to find a health care provider that you trust and that agrees with your general health-philosophy.  Our philosophy is generally laid back; keep everyone safe and let things take their natural course.  He’s been tremendous at helping us know what things are serious and what things can wait through the weekend, which preventative measures are worthy and which are a waste of money and time.  I’m taking the time to explain this, because what he told us this week really shocked us and is forcing us to reconsider quite a few things.

It basically comes down to the amount of time that Zeke spent on the oxygen after he was born.  We’ve had a generally optimistic outlook on his development and overall health up to this point, and we’ve been right to be – he is doing well right now.  The issue is his susceptibility to a host of seasonal sicknesses, particularly the respiratory ones such as the flu (swine or otherwise), whooping cough, RSV, etc.  His weakness doesn’t have anything to do with his condition per se, but the combination of the oxygen use and his age (obviously significantly under a year) make him very prone to contracting these illnesses, and most or all of them would be hospital events at the least.

We told him that we’d been feeling like we were somewhat paranoid about taking Zeke out, but that we’d been doing so for the last month or so in controlled environments.  He looked us in the eye and told us that we haven’t been nearly paranoid enough and that we were now moving into the worst part of the year.  We were pretty taken aback, especially given how well Zeke has been doing .  To add to the weight of his verdict, he is a God-fearing Christian who understands fully the need for church and social interaction for all of our kids.   He specifically told us that we can’t bring Zeke to church again and that to do so would be grossly irresponsible.

So we’re not sure what to do with all this – obviously we won’t be bringing Zeke around public places for a few months.  Throughout this entire summer we’ve people ask us if we weren’t being over-excited by some over-zealous doctors.  We’ve strived to maintain a balance between reason and caution, caution and fear.  We’ve sought a variety of opinions on almost all of the issues facing us.  The most sobering aspect of all this is that this strict direction came from one of our more practical medical advisors.  The big specific concerns are not mythical monsters in the closet, either.  We’ve had RSV and Whooping Cough circulate among our friends and their kids in recent years.

At the moment we mostly want everyone to understand what we’re looking at for the winter months…  our older kids can go out and interact (with obvious close supervision and clearly good health in their friends) but we’ve been told especially Jed can’t be in a group babysitting or play environment.  Obviously Jesi and I can interact with other adults, but most if not all of our social interactions for the next few months will have to be divided between us as one of us stays home with Zeke.  We can’t even really have people over (except those of you that don’t have or don’t bring kids over).  We’re basically going to be recluses until the spring; which is going to be tough.

How can you all help?  I don’t know yet.  I’ll have plenty of interaction through work, but I need to make sure that Jesi gets out periodically and can visit with other women.  You can pray for our health – especially for Baby Zeke.  This is not a permanent frailty – once he reaches a year things should hopefully (really, hopefully is all we have) improve considerably from the immunity perspective.  It’s the combination of his 3 short months of age and his 1.5 full months of oxygen that have left him open to infection and sickness.

Needless to say, we feel like we’ve been walking around with a little flashlight and then the sun came up and we saw that we were walking on the edge of a precipice.  We’re starting to get used to these life-changing developments; this is just the next chapter.  This, too, shall pass… at least we hope so!

The hearing aids are in!  After a long 4 hour appointment this morning, Jesi brought Zeke home with his first pair of hearing aids.  The difference is very noticeable when he is wearing them – he blinks and starts at much much softer sounds.  He seems to enjoy hearing quite a bit, although it was a little overwhelming for him at first.  For the next week or so, he’ll only be wearing them for a few hours at a time while he’s awake so that his ear can get used to having them and not get irritated.  They’re super cute and he doesn’t seem to mind them at all; his favorite bouncy seat is much more engaging for him now that he can hear the music; and he’s responding much more to Mommy’s voice.

Thus begins a life of assisted hearing; we’re just grateful that they’re available and that we can already see such a difference in how he interacts with us.

Latest update….

OKAY!  I apologize for the lengthily delay between updates…  things have been crazy and we feel like we’ve been hanging on for dear life.  It seems like there have been no areas of our life that hasn’t been touched in the last month, from sickness with the kids (still working Jed through a 104 degree fever even as I write) to a job saga that ended in a new assignment that has me putting in 11-12 hour days to the ongoing doctors appointments and a special project that I’ve been working on in the evenings for a few weeks now (more on that later).

Other than the general insanity, things are going fairly well.  Zeke is progressing normally so far, including a few milestones that are very encouraging.  He’s started to respond to us visually and even to smile at us when we play with him.  Needless to say, that’s terrific since we know that he has visual cognition and is processing the things he’s seeing.  We weren’t sure he’d do either one of those, so obviously it’s fantastically exciting to have him interacting with us.  He’s also rolling over from his tummy to his back, another milestone that he’s actually been early for.  He’s also beginning to establish some rhythms, including sleeping for around 5 hours every few nights.  That’s been a real blessing, though the sickness with the other kids has interrupted that stretch most nights.

Most of the energy with the doctors at the moment has been going to the hearing problems that we know he has.  We’ve spent several long (4 -5 hour) appointments with the hearing specialists at Children’s.  His hearing loss is confirmed, it is moderate in his left ear and severe in his left.  The tests have indicated that it is a nerve damage problem, which is positive because it means they can effectively use hearing aids to boost the sounds that he can here.  He was fitted for the hearing aids last week and on Monday we have the appointment to get them hooked up!  We’re excited for him to be able to hear us and hope that he’ll respond well to our voices.  He’ll have to get the inserts refitted every few months as he’s growing so much in these first few years.

His hearing loss is stable and won’t deter ate according to the doctors.  He can also hear, but the levels are turned way down.  One estimate that was given to us was that he can hear a vacuum cleaner the way we would hear water dripping.  Even with the hearing aids he won’t ever be able to hear normaly, in much the same way that our older family members with hearing loss struggle to distinguish sounds in noisy environments, he’ll always wrestle with that.  But in like manner he’ll always be able to turn ‘em off when he’d rather not be hearing what’s going on J

Another big praise is our state legislature.  We found out a few weeks ago that insurance companies don’t pay for hearing aids, which left us facing ~$5,000 in out of pocket expenses for the hearing aids – even at his age, they’re critical since hearing is central to language development starting around 3 months.  Long story short, this year Colorado passed legislature requiring insurance companies to pay for hearing aids in children under 18.  We were still sketchy, since there has apparently been quite a bit of interpretation by the insurance companies about what that actually means.  But we found out on Thursday that Zeke’s hearing aids will be entirely paid for by the insurance, a tremendous blessing.

Plenty more appointments in the coming weeks – I’ll be better about a more frequent update and some more pictures in the coming weeks.  We’re desperate for life to slow down a bit and burrow in for the winter.  More on that project that I’m working on as well – it’s not ready to be unveiled yet, but it’s close.

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!

Okay – finally some news, but first some tougher news. 

We met the hearing specialist at Swedish on Sunday morning to go through the next round of tests.  That morning wasn’t any different than any of his other tests; he failed the two different types that they gave him, and his scores were pretty low.  We’re still reading up on all the details, but in a nutshell, there are three types of problems that can lead to hearing loss; blockage, nerve damage and brain interpretation.  At this point, we’re pretty much ruling out blockage, such as fluid in his inner ear, since he hasn’t improved in four weeks.

That leaves nerve damage and brain interpretation issues.  These tests were still somewhat on the screening end – it’s actually good news that he failed both of the tests.  In a brain interpretation scenario, the signal is leaving the ear and traveling up the nerves to the brain, but the brain isn’t translating the impulses correctly.  This is the worst situation, since there is nothing they can do if the brain won’t translate.  If there is nerve damage, the brain will interpret, but the sounds don’t travel up the paths to the brain so it’s irrelevant.  The good news with nerve damage is that you can have partial nerve damage, and they can work with the nerves that you DO have.  Which is why hearing aids work – they can boost volume, etc to translate other sounds into the spectrum that you can process.

So he failed both tests, which is actually good – if the nerves aren’t sending the proper signals, then the brain won’t appear to be processing, causing a failed test.  If the nerves are functioning correctly and the brain is failing, that’s obviously bad.  But, all things considered, it appears that he has nerve damage.  This also explains the situations where we’ve seen him startle, etc.

The next round of tests will come hopefully later this week.  The tests he’s undergone so far have not ventured into the ranges of volume, pitch, etc, so that’s the next step.  If we can see that there is a certain range or volume level that he can operate in, that’s going to help determine the next steps.  They want to get this done as soon as possible, because if there is something that we can put in place to help him hear, they want to do it quickly due to his age.  The next three years are critical to his language development, and he needs to be able to hear as much as possible to help him out with that.  We’re still reading the ramifications if he’s mostly deaf through early childhood, so I can’t comment on all the details yet.

Interestingly, it seems that the nerve damage, if indeed that is the problem, stems from his cord knot and not the anginomas or the bleeding he experienced.  They say that the blood oxygen loss from the knot before and through the birth process almost certainly contributed directly to the nerve damage that we’re seeing now.  It does open up another door – are there other areas of damage from the knotted cord that we haven’t seen manifested yet?

On a more positive note, we had his follow-follow-follow-follow-up doctors visit today.  We were pretty concered with his levels of weight gain at the previous visit and really needed to see 4 to 5 ounces put on.  Turns out he took his challenge seriously and threw on 8 ounces in five days – serious weight training!  So that’s very exciting, he’s starting to fill out a bit and not look quite so emaciated. 

But the really good news came as quite a shock – they took him off the oxygen for about 30 minutes and his O2 levels didn’t change at all.  So rather than the three more weeks that we expected before he was done with the oxygen, they took him off today!  Apparently his lungs did quite a bit of work over the last few weeks and they’re comfortable pulling him off altogether!  We’ve still got all the equipment and we’ll keep it for a while in case he seems to be having trouble, etc, but he’s been off since around 1pm and is doing quite well.

It’s bizarre to carry him around without tubes trailing around and it seems to have made a big difference in his grumpiness levels.  Apparently having those tubes sticking up your nose IS as uncomfortable as it looks when you’re a few weeks old.  It’s obviously a tremendous relief not to have tubes trailing all over the house as well…

So it’s been a good day – hopefully he’ll sleep better with the oxygen gone as well – we could all use a good nights sleep.  Thanks for the prayers on the weight gain, they clearly helped – and what a blessing to have the oxygen off so unexpectedly.  It’s like getting a new baby!  We don’t have another standard appointment with the pediatrician for two weeks, rather than every three days as we’ve become used to.  The next thing on the radar is the next hearing test – please pray!

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