Friday, November 30, 2012

Spine News! Finally!

Ah, thank Heaven for some AMAZING doctors! My absolute, one hundred and fifty percent favorite doctor I have ever had to deal with EVER is Micah's Neurologist. I wish she was his primary care doctor, that would be splendid. Anyways---I finally got a call from her this week, after I put in a call to talk to her about Micah's MRI this past Monday. Until now I was getting nowhere fast with Micah's neurosurgery pursuit, so I figured just call her and talk to her about it.  She was sick this week, but just called me back...and it was worth the wait!

First she asked me what I knew, which was that they did the MRI, saw the syrinx then did an MRI of his whole spine instead of just his head. So then she elaborated, telling me in reader's digest form of what I had already researched about Syrinx in general and what causes them. She said first that both a tumor and Chiari malformation (common brain malformation that causes syrinx to develop) ARE NOT an issue here---his brain is fine and no tumors. I figured as much, but a relief to hear. Then the second thing is that this Syrinx goes from the top of his spine all the way down to the very end. It's the ENTIRE length of his spine (at which point I got worried).  Basically, as she explains it, the normal canal down the spinal cord of cerebral fluid is about a milimeter thick, his is enlarged, the whole way down.

HOWEVER, she and I both agreed (in fact she said I took the words out of her mouth) that his "symptoms" are typical of the PVL in his brain, NOT a syrinx. When I found out he had PVL 2 years ago I was told he had a 70-90% chance of having Cerebal Palsy---specifically Spastic Diplegia (a type of CP, as cerebral palsy is an umbrella term for a wide range of conditions), as "SD" or "hypertonia" is most commonly associated with PVL, and especially since he had it on both sides of his brain it was all that much more likely. His Physical Therapist agrees that his muscle spasticity is typical of Spastic CP. Micah's neurologist agrees, he isn't showing any neurological symptoms of having a syrinx, and that what we are seeing is from the PVL---in fact she wonders if the syrinx might be causes by his PVL as there is no other visible reason for it to be there.

So good news #1 is: she feels as though his Syrinx is a non-issue concerning his health. For one, I asked her how often he will need a follow up or check up MRI etc on his Syrinx. She said that there is no set standard, but she said that techinically we may NEVER have to, but if we want to be cautious we can check on it every few years. As long as he is assymptomatic then it really isn't an issue. If he gets in an accident or something then we would want to check it out, but that's about where we stand. Phew!

Good news #2: not only does she believe that surgery is not necessary, she believes that it most likely will NOT affect his ability to get the SDR. She said if anything it will help us have even more reason to try to get him to St Louis to get the surgery, AND if they feel it will help or is necessary then he could possibly have the Syrinx drained at the SAME time. They may or may not have to touch it at all, but if it's something the surgeon decides we should try then it would be great to get it all done at one time at one place. She recommends against having it done locally, and to continue to pursue having his SDR surgery. (Real quick, before all this MRI happenings came about, I found out about a surgery called Spinal Dorzal Rhizotomy in which they go into his spine, find the nerves causing his spasticity and sever those ones, leaving his motor nerves in tact and thus reducing his muscle spasticity in his legs. The earliest they do the surgery is at 2 yrs). I am SO thankful that for now it seems as though he has a good chance at getting SDR done soon, and that this Syrinx may be a blessing in disguise to help our insurance cover the surgery and trip to St Louis.  !!!!!!!!

I am so happy. I was so worried that his chances of SDR was dashed into the dust because of this. Unless Dr. Parks (SDR surgeon specialist in St Louis) says otherwise, then we can still pursue this thing! Yippee! Not only that, but although it sucks that he has an Syrinx, his neuro says that it's basically just there, it is what it is, but it's really nothing to take great consideration over aside from this other surgery we want. So no worrying about being near a spine surgeon, or getting frequent MRIs. Thank goodness!

Thanks for your prayers! We'll start working on his x-rays that he needs and paperwork to be sent into St Louis to work on this surgery :)  In the meanwhile we are still going to try to be seen by this local neurosurgeon, since we already have the approval, so that he can turf us to St Louis for insurance reasons---since they would want to send us to him first because he is local. Gotta play the insurance game.

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.

Thursday, November 1, 2012

I may need binoculars

So Micah has never been terribly fond of me leaving him in the hands of strangers (even his PT that he's had for 18 months) in a foreign land aka anywhere and everywhere but especially places he knows he doesn't know. And this horseback riding thing is no exception.

For liability reasons we are not allowed to partake in his therapy here, so we cant be with him which he doesn't like. On top of that, Micah has taken to screaming bloody murder they-are-sawing-off-my-hands death screams when I walk away OR if he sees us sitting in the waiting area. Now we park on the other side of the property and watch him from a distance. He has a blast because he's not worried about where we are but I can't see a dang thing. I think we may need to bring binoculars....

Top image is actual
Bottom is zoomed in on my phone

Intro to Micah's Story

The name of the blog may be Jeremiah was a Bullfrogge (special spelling for dramatic effect), however this blog is mostly about our Micah J---Jeremiah's twin. Micah & Jeremiah were identical twin boys, due in the month of January 2011, however fate had another plan and they were born 10 weeks early. Shortly before their untimely birth we discovered via ultrasound that our sweet Jeremiah Colton had gone to be with Jesus. Micah "J" Carson still was very much alive but faced certain hardship as he was set to arrive much to soon, surrounded by complications and the tragedy of his stillborn brother. Micah was born vaginally, after his brother, in an OR and had an APGAR score of 1/7. He came out long and skinny, didnt cry and he was dark red but not blue. It was an incredibly rough and complex day for all of us.

Thus began Micah J's unique journey. He spent 6 weeks in the NICU waiting to grow from his lowest 2lbs 5 oz to be as close to 5lbs as necessary for him to come home. He did very well overall in his NICU stay, coming home still 4 weeks before his due date on a light flow of oxygen via nasal cannula (due to our high elevation---many near sea level babies do not need oxygen for as long as us high desert dwellers).  Everything went to be expected---for the most part. Everything except that blasted head ultrasound that came back when he was 4 weeks old (34weeks gestational age) that he had what they call bilateral PVL. Although it was not extensive, it still was cause for concern, and the doctors gave us the "your kid can grow up to be fine, become a totally mentally retarded vegetable or something in between, but you'll just have to wait and see," shpeel. Needless to say we were crushed and if things weren't hard enough already grieving his brother and having a preemie now we had THIS to worry about. I won't lie, this gave me a ton of anxiety and I am pretty sure I google the crap out of PVL and outcomes. He was overseen by early intervention specialists and eventually a neurologist because of his PVL and prematurity. (PVL is basically small cysts that form in the brain in the white matter, and those cysts are spaces where the brain matter is lost. They have no way to predict the outcome, but having PVL on both sides of his brain did give him increased risk of having a specific type of Cerebral Palsy/CP)

As time went on and he grew past his due date, he began to reach many milestones and it was clear that at the very least he could hear, see very well, and was there mentally as far we could tell. Those attributes have proven to be true even to this day, just after his 2nd birthday. Micah is one smart, albeit demanding, cookie. He did however begin Physical Therapy twice a month at the age of 6 months/4 months adjusted (for those of your non-preeemie-familiar, you adjust their age to their original due date for development until they turn 2 years old. So in our case, Micah's adjusted age was always 10 weeks less than his actual age).  He had been tucking his thumb under his fingers instead of over when fisted which was a sign that something neurological was going on. His biggest hurdles have been reaching his gross motor milestones. As a 2 year old, he still cannot crawl on all fours, get himself into a sitting position, sit unassisted for very long (although improving) or walk or stand unassisted at all. As of today, he CAN however commando crawl, sit when he wants to, walk in his walker, cruise around furniture, pull to a kneel and almost a stand on many objects, and he as been playing with his ability to stand and balance at the same time. His fine motor skills are pretty good, however they are sometimes inhibited by his ability to perform gross motor activities (for example, he can stack blocks and flick switches or draw, but if you have him sit on his own and try to do it it gets much harder because he has to focus more on staying up right and not falling over).

Since he started Physical Therapy his list and frequency of therapies have gone up. He went from Physical therapy every other week to now he has Two hippotherapy (horseback riding) sessions for PT a week, 1 OT (occupational therapy), and every other week he as either Cranial Sacral work done or in home PT. He also sees a well renowned infant massage therapist.

His motor skill issues are due to high tone in his lower extremities (aka his legs) so he lacks flexibility to be able to sit and move around like most babies, when he is excited, challenged or angry his muscles get really tight and he is very "Strong" due to that high tone. Standing and moving his legs fluidly can be quite the task for him. He has a difficult time coordinating his muscles because of the tone---which is due to the PVL and subsequent Spastic Diplegia of CP.

Here is a list of things (that I can remember) we have struggled with Micah from the day he came home from the NICU until now:
  • Low body weight - he's ALWAYS been a teeny guy (not quite 20lbs at 2yrs)
  • Reflux (mostly silent)
  • Thrush (caused complications with nursing - however i did exclusively BF him until 18 months)
  • Extreme Fussiness/ Colic
  • Weaned off O2 3 weeks after he came home
  • NEVER went to sleep easy
  • SCREAMED in the carseat until about 9 months of age
  • Gross motor issues, - cant sit unassisted or walk or explore on his own with help or his walker
  • Fine motor issues - improving
  • Frustration on his part due to his inability to explore and move the way he knows he should and wants to
  • Did not sleep through the night until 18 months and has recently started night waking again
  • Sensory issues
  • Severe Separation Anxiety - probably associated with twin loss
  • "High Maintenance Baby"
  • Slight delay in speech now however I have been working on him at home and he has made great improvement! 
 Despite his and our struggles, Micah continues to be a blessing and a joy to this family. His presence, personality and infectious smile will brighten anyone's spirits!