Monday, November 26, 2012

Updates 'n Stuff

I know, I know. A long awaited update and I am well overdue on keeping people in the loop. A lot has gone on this past month, and I was hoping I would have a better follow up by now to conclude this chapter of my update, but it seems we are still awaiting on some referral paperwork to go through.

What might I be talking about? Micah turned 2yrs old in October (yay!) and this meant he was due for a follow up MRI. The first MRI he had done was while he was still in the NICU, about 5 weeks old (35wks GA) and as a rule the neurologists like to see one again at 2 yrs. We didn't expect much, other than the PVL to show up however it's supposed to show up on an MRI after 2 yrs (I don't know if it changes or not over time). Any who, taking your child for an MRI is no small task and if nothing else it is at least emotionally taxing to know your little boy is going to be sedated and put through a big machine that's going to scan his brain.

After all the hullabaloo of getting his forms filled out we mazed our way through the hospital to Radiology. They took us back into one of the pediatric rooms which is painted in one big GIANT mural and it's all "kidded out". It was cute. We discussed the options for sedation and then there we wait...the lights were dimmed and the soothing music played (and made me all teary eyed--I was constantly on the verge of tears) and all we wait for is our sweet Micah J to fall asleep. Daddy read him a book and he started to get hiccups and droopy eyes and boy did he fight the sandman, but the sandman won. I tried really hard not to cry. It was so sweet and innocent with a tinge of sad and a pinch of worry.  Daddy laid his son's little body onto the bed, and they started to wire him up with oxygen and...that thing that tells you his blood oxygen level (LOL--I can't remember the name). Wrapped him in sheets and we wheeled him out the hallway, down another hallway, around a corner, another hallway, one more corner, into an elevator, out of the elevator, around the corner, down a hallway, up another, around that, up this, down that...and then we said a swift good bye as they wheeled him into his MRI.

The MRI, they told us, should only last about 18-20 some odd minutes. So we knew it wouldn't be THAT long, as we had time to shove a subway sandwhich down our throats. (At this point it was near 2:30pm and I had starved myself all day since Micah couldn't have food past 8am, and I felt guilty feeding my face while I unwillfully but intentionally starved him for 6+ hrs AFTER a full nights sleep). It's seemed longer than 20 minutes, but when you sit in those waiting rooms, 5 minutes feels like 5 hours and 5 hours feels like 5 months. We mazed ourselves back to his room where we were to wait for him to wake up. Micah, on the other hand, had other plans as he had yet to have his nap, so not only was he not too fond of waking up, but he definitely would not go for drinking ANY of the 4 or 6 oz of fluid he needed to drink and keep down in order for us to be released. So...we let him sleep. And we hung out.

All this would have been par for the course---ok, I give it a Birdie considering our luck---if not for that little bit of information: "Oh, by the way, the reason it took so long was because the tech saw something in his spine at the base of the head so we scanned his whole body. He has what they call a Syrinx."  Ok, so maybe he didn't say "Oh by the way", in fact I actually quite liked the Pediatrician on duty there, but to my parental mind it sounded more like, "Oh you know how you like things to go smoothly and as expected for once? Well, yeah, we decided to make life even more exciting so now you get this new thing to worry about in your son...something cool that you've never heard of in his SPINE which sounds relatively worrisome and I know my tone doesnt make you feel worried but my words do and at least you get to go see another doctor now YAY!" Yeah, I think that does it justice.  (I guess the day ended up being more of a triple Bogey, or worse--but then again I probably golf better in a metaphor on a bad day then I would in real life golf, on a good day). I was caught off guard, we both were, and now there's more mention of seeing a Pediatric Neurosurgeon. So neurosurgeon it is! Thank goodness Micah was still sleeping soundly on his hospital bed so I had time to google the "inx" out of "syrinx". Yes, syr I did. (I crack myself up)

The fact is, no more hours worth of googling "syrinx" and associated terms were/are going to get us answers to what's going on with Micah's spine now. It really all rests in the consult with this neurosurgeon, to see what it is exactly, and how, why and what we are going to do about it if anything. It may be something serious that needs immediate surgery to all the way on other end of the spectrum where it may just need to be a "watch and see" kind of situation. Or heck, it may not be a syrinx at all, as this wouldn't be the first time something weird happens on a scan or that a more generalized doctor thinks they see something more major that a specialist writes off as hogwash. Who knows. The questions are aboundingly endless---I just want answers. And HOPEFULLY, this appointment with the NS will be in the next week or two, or three. I'd really like to know where we stand on this. I'd also like to know how this may affect Micah's eligibility for the SDR surgery*.

Hopefully we find out soon. In the meanwhile, Micah J is rocking our socks off and has made some huge strides in his strength and mobility lately! He's pulling up to stand or kneel on furniture better, crawling (still comando style) over everything, and has taken to summersaulting off the ottoman onto pillows for sport. He also LOVES "Super Why" and is getting better at his growing vocabularly. So that for sure is great news.

Please keep Micah & our family in our prayers, as always. We pray more than anything that he will continue to grow and be given the best chance in life. Hopefully this new development will not render him ineligible to go to England, but no matter what his health is the most important.

*I keep mentioning SDR surgery like I've explained it, but so far it keeps being put on the back burner. More on SDR someday.


  1. Always in prayer for your family. Thank you for the updates and the specific information. Of course, the greedy part of me wants you in Europe with us, but ultimately, it is whatever is best for Micah. Love you, dear friend! Keep the posts coming!

  2. Thanks Ariel! Your prayers mean a lot. I really hope we can move to Europe along side you all...but if not we'll have to plan a trip to visit. Still praying we can go!