Speaking of...
...our little Wild Man...
I've had so many people wondering what's been going on with Mr. Z's doctors/appointments...Zoe's medical needs have overshadowed Zane's from the beginning, with these last couple months more than trumping his waiting game...but I wanted to catch you all up on our Little Taz. :)
When we last had a heart-to-heart about little Z, we had made our first trek into the city and met with a good number of specialists. We were told the cleft would be the first batter...followed by a hit to second, oral/jaw (teeth were great, but he's missing the back jaw bone on the right side which they'll have to build)...and finally the home run hitter, the ear (around age 8 once the left ear is mostly fully grown so they can try to match it). For good measure, they also threw in a stint in the outfield, neurosurgery, and the always elusive bunt, genetics. (I honestly have no idea why I'm obsessing with the baseball references...other than I must be DEVASTATED that baseball season is over...yea, that's it...devastated.)
Just before Zoe's extended stay at the PICU resort, we had our visit with the neuro peeps. It must've been obvious that this was way above my pay grade, because the doc took it very slow and tried to simplify when possible. I was too grateful to be offended...my interpreter was absent that day...so dumb it down, my friend...dumb it down. He wasn't concerned at all with the misshaped cranium (insert your best Mike Myers impersonation here...hahahaha...sorry, couldn't be helped) but instead directed my attention to the "dimples" on his cheek and shoulder. He thought it very likely that these had nothing to do with the possible genetic disorder and were more likely caused by amniotic bands. This was pretty surprising as my exposure to these lovelies was very limited and very recent. My sister-in-law was told last year that her second baby may suffer from these amniotic "pinches" which often result in loss of limbs for the baby. Obviously we prayed our guts out for Myka Moo, and we were thrilled when she was born completely whole and perfect. God is so gracious. Anyway, the doc said if this bands were to blame for these "divots," then Zane would likely have some vertebrae fused together. He sent us down for an x-ray and, sure enough, C2-3 were fused. Then he ordered a kidney ultrasound because the same culprit causes kidney damage. We are still waiting to hear back on the results of that recent test.
During our prolonged hospital stay with Zoe, I decided we should multi-task since Zane and I were there a good many days just sitting around. So I began calling offices of Zane's doctors to see what tests could be done while we were already there instead of waiting until we went back home and would have to drive straight back. Well, it should be no surprise to those that know me well to hear that I stirred up quite the hornets nest! HAHA! Shake things up...ya know...keep 'em on their toes, I always say...or maybe that's what I've taken to calling my aggravating people to no end..."keeping them on their toes"...yea, that sounds way better.
For all the incredible communication we had with every single one of Zoe's doctors, we couldn't get any two doctors of Zane's to say the same thing! We're waiting...we're going...he'll begin treatment this fall...this winter...next year...ACK! You get the picture.
Multiple doctors said they'd need a 3d scan of his head before proceeding with any surgeries so I tried to get them to do that on one of our many visits. I couldn't get anyone to even acknowledge the order...like this is my favorite...making up bogus X-rays where you have to put my baby to sleep. Yep...nailed it.
There is sufficient reason to be concerned that there is nerve/tissue damage to the right side of his face as well. This will come into play when they do each surgery because they wouldn't want to do any further damage there.
I also tried to get us into the geneticist while we were living up at the U, but the earliest we could get in was...are you sitting down...November! Who are these people?!?! I mean...c'mon! This side of the coin isn't vital now as it will not likely alter the course of any of his immediate treatments, but we would need to know if he has any genetic disorder for future reference. Anyway, another brick wall.
I've had so many people wondering what's been going on with Mr. Z's doctors/appointments...Zoe's medical needs have overshadowed Zane's from the beginning, with these last couple months more than trumping his waiting game...but I wanted to catch you all up on our Little Taz. :)
When we last had a heart-to-heart about little Z, we had made our first trek into the city and met with a good number of specialists. We were told the cleft would be the first batter...followed by a hit to second, oral/jaw (teeth were great, but he's missing the back jaw bone on the right side which they'll have to build)...and finally the home run hitter, the ear (around age 8 once the left ear is mostly fully grown so they can try to match it). For good measure, they also threw in a stint in the outfield, neurosurgery, and the always elusive bunt, genetics. (I honestly have no idea why I'm obsessing with the baseball references...other than I must be DEVASTATED that baseball season is over...yea, that's it...devastated.)
Just before Zoe's extended stay at the PICU resort, we had our visit with the neuro peeps. It must've been obvious that this was way above my pay grade, because the doc took it very slow and tried to simplify when possible. I was too grateful to be offended...my interpreter was absent that day...so dumb it down, my friend...dumb it down. He wasn't concerned at all with the misshaped cranium (insert your best Mike Myers impersonation here...hahahaha...sorry, couldn't be helped) but instead directed my attention to the "dimples" on his cheek and shoulder. He thought it very likely that these had nothing to do with the possible genetic disorder and were more likely caused by amniotic bands. This was pretty surprising as my exposure to these lovelies was very limited and very recent. My sister-in-law was told last year that her second baby may suffer from these amniotic "pinches" which often result in loss of limbs for the baby. Obviously we prayed our guts out for Myka Moo, and we were thrilled when she was born completely whole and perfect. God is so gracious. Anyway, the doc said if this bands were to blame for these "divots," then Zane would likely have some vertebrae fused together. He sent us down for an x-ray and, sure enough, C2-3 were fused. Then he ordered a kidney ultrasound because the same culprit causes kidney damage. We are still waiting to hear back on the results of that recent test.
During our prolonged hospital stay with Zoe, I decided we should multi-task since Zane and I were there a good many days just sitting around. So I began calling offices of Zane's doctors to see what tests could be done while we were already there instead of waiting until we went back home and would have to drive straight back. Well, it should be no surprise to those that know me well to hear that I stirred up quite the hornets nest! HAHA! Shake things up...ya know...keep 'em on their toes, I always say...or maybe that's what I've taken to calling my aggravating people to no end..."keeping them on their toes"...yea, that sounds way better.
For all the incredible communication we had with every single one of Zoe's doctors, we couldn't get any two doctors of Zane's to say the same thing! We're waiting...we're going...he'll begin treatment this fall...this winter...next year...ACK! You get the picture.
Multiple doctors said they'd need a 3d scan of his head before proceeding with any surgeries so I tried to get them to do that on one of our many visits. I couldn't get anyone to even acknowledge the order...like this is my favorite...making up bogus X-rays where you have to put my baby to sleep. Yep...nailed it.
There is sufficient reason to be concerned that there is nerve/tissue damage to the right side of his face as well. This will come into play when they do each surgery because they wouldn't want to do any further damage there.
I also tried to get us into the geneticist while we were living up at the U, but the earliest we could get in was...are you sitting down...November! Who are these people?!?! I mean...c'mon! This side of the coin isn't vital now as it will not likely alter the course of any of his immediate treatments, but we would need to know if he has any genetic disorder for future reference. Anyway, another brick wall.
Dr. Edens (our beloved central hub for all-things Zoe) suggested we get our primary doctor...hereafter known as Situ (trust me...you want me to keep his name simple! :) Kind of like "Wagenschutz"!!!)...involved so we'd have a central go-to dude running the show. I finally took him up on that advice when I got a call a couple weeks ago from the cleft offices saying the next thing on the docket for Zane was tooth extraction with the oral surgeon...okkkkkk...since we haven't heard anything about TOOTH EXTRACTION, how's about we back up this train just a bit?!?!? HAHA. No, really.
After the cloud lifted earlier this week, it sounds like everyone is getting their ducks in a row, and we should have some answers within the week. No teeth extraction, no oral surgery anytime soon...likely 2-4 years away...and ear will still be last around age 8.
Our original information was actually correct. The doctor wanted to wait a bit on the non-urgent side cleft just to give us some extra bonding time. That anticipated time is drawing near, and it's looking like Zane will have his first surgery on the cleft (to close up that side of the mouth) in September of this year. You can begin to pray for little man...it's going to be rough. Not necessarily because of pain and discomfort but more to the point, he will have to be calm and rest for recovery. Not his strong suit. No joke...we may have to remain sedated for a little while. HE NEVER STOPS MOVING.
You can also pray for our other kiddos when Zane goes in. As you can imagine, the concerns of life and death situations are at the front of our minds, at the tip of our tongues...so we will begin praying now for peace and supernatural comfort as we make our way through these muddy waters.
The biggest perk? We're wearing Holy Spirit floaties...and the Chief Lifeguard is watching closely...there's no way we're going under.
