Monday, June 2

We Made It!

What a whirlwind these last three days have been!

We were up at 5 a.m. on Saturday morning and didn't get to the hotel until 5 p.m.  But all in all, we had a fairly uneventful trip.  Bryce was the absolute model passenger on both flights.  Mostly he made friends with the people within view of him, slept and snacked.  I couldn't have hoped he would be any better.  Truly.

Gage was, well Gage.  He also made lots of friends but sitting still is not his forte.  I was glad to have his car seat so I could 5-point harness him to his seat but unfortunately that made him close enough to the seat in front of him to kick said seat.  I apologized profusely and tried incessantly to keep him occupied.  He did finally sleep for about an hour of our second flight, which was a welcome reprieve. 

We're finally all settled in to the Homewood Suites now and today was Bryce's first day back at the Conductive Learning Center.

I don't remember being this nervous or excited last year.  Maybe it's because Caleb was here with us for the trip and first couple of days last year.  Or maybe it's because I know now just how much is possible here.  Whatever it is, it's a lot to keep in check while managing the single mom gig.

But so far it's been a lot of fun getting some one-on-two time with the boys.  We've already visited a couple of our favorite places from last year and are looking forward to hitting up Oval Beach as soon as possible.

Bryce seemed to truly enjoy his first day back at CLC.  He was painting and showing off when we peeked in early for pick up this afternoon.  There are lots of new friends in his class and will likely be more next week when the official extended school year begins.

I got the opportunity to visit with the director this morning at drop off and was grateful for how excited she was to have Bryce back.  I can't wait to see what improvements he will make over the next four weeks.

I'll try my best to keep ya posted!

Friday, March 7

The Story of the Broken Jaw

Let me just get the bragging out of the way right away.  Bryce is one tough kid, y'all!

I've personally stood by while he barely complained when he split his chin open to the bone, bit through his tongue, had double ear infections, a hand covered in fire ants...brain surgery.  He barely seemed to notice at all.

I remember when Bryce was about a year old and he had his last shunt revision.  We took him to the ER in the middle of the night because he was crying.  I saw the look in the triage nurse's face when we told her we were there because he was crying.  I know she was thinking, "Oh you young, new parents - babies cry."  Not this one.  Just a few hours later he was in emergency brain surgery.  No previous symptoms or complaints - just an hour of crying.

Tough. Kid.

So, on Monday when the school nurse called to say he fell walking down the hallway and bled (she emphasized the copious amounts of blood, clearly unnerved), I wasn't initially too worried.  My first question to her was, is he over it now or still upset.  She said he was kind of going back and forth.  That's when I started to worry.  He usually gets over bumps and scrapes pretty much immediately.

I went and picked him up, took him home and started to feel better as he seemed ok.  I let him snuggle up in my arms and nap that afternoon and when he woke up he seemed to be slightly uncomfortable, wincing a little as he tried to get comfortable. 

That night at dinner we saw the first indication that it was his mouth that was bothering him as he winced when trying to bite down on something and immediately wanted to be "all done" as per his signs.

But the next day he seemed ok.  We had an ice day so he stayed home with me and the sitter all day.  He played and napped and only complained when it came time to eat.  And then again at dinner he clearly was pained to eat and for the first time we saw him clearly indicate severe pain as Caleb attempted to wipe his mouth after dinner. 

That got us both worried enough to call and make an appointment with the pediatrician.  Unfortunately ours was out on Wednesday and the one we saw wasn't familiar enough with Bryce to know he was off, or familiar enough with me to know I wasn't being overly cautious.  Though I worried that I was because while he did seem not quite right, most of the time he seemed fine.  And it's not like we can just ask him.

So with a clean bill of health from the pediatrician I took Bryce to school.  No report from them led me to believe that they weren't noticing anything.  But when he came home I knew he was still off.

Thursday, yesterday, morning I began making the dreaded phone calls.  I called neurology in Dallas where the nurse said since we aren't local we should call our pediatrician again as well as neurosurgery. 

I spent a ridiculous amount of time on the phone with the nurse at our pediatrician and am greatly regretting all of the wonderful praises I was singing about them just the other night to some other mamas.  In her defense, our pediatrician wasn't at fault and did call back - while we were already in the ER.

Our neurosurgeon's nurse was really the saving grace of my week.  I didn't have to hold to talk to her, she asked a lot of informed questions (nice change after speaking to the pedi nurse) and took me seriously.  She then called the nurse practitioner and five minutes later called me back. 

Her advice? Go to the ER.

My response? But, do we have to?

I feel bad now, but we've spent a good solid six months of our lives in that hospital all told.  If I can avoid it, know that I will.  Like the plague.

I argued it wasn't an emergency, practically begged her to let us come to the office and insisted there must be a better solution.  She finally convinced me that we needed to go somewhere right away and that it needed to be a place where they could run tests and order scans.

Fine.  Sigh.

So Caleb met me at home where Bryce was just getting back from school.  We packed up and headed to our least favorite place.  In the whole world.  No offense to all of the wonderful angels who work there. We love you all but would prefer our relationship be solely a social one.

The ER doctors were great.  They heard me, you know really heard me.  Touched his face to see that he was clearly having pain, ordered a CT that would show his entire jaw as well as he shunt.  Two birds, one stone - that's the kind of medicine that restores my faith in our health care system.

Shunt function is fine (YIPEE!).  Jaw not so much.

Bryce has two fractures in his lower jaw.  One clean break right in the center of his chin.  And one not at all clean break on the right side, near the joint and his ear.  That one is apparently "broken into a bunch of small pieces."

I feel so incredibly terrible that he's had a broken jaw for 4 days before we found out about it.  I mean no wonder he hasn't seemed himself, I know that must be truly painful.

Tough kid, y'all! TOUGH.

The good news is that the cranio facial surgeons said they don't want to do surgery.  Kids grow bone and heal so quickly that fixing it would really just risk his jaw fusing together and therefore causing subsequent need for surgery. 

So in and out in about three hours.  Is that an ER record? Because I really thought we'd be there until midnight.  With a prescription for some good pain meds and an appointment with the specialists next week to get the gory details.

Sometimes I really do want to be like, "Really, Life?  Can't ya just cut us a tiny break?"  But then I think better of tempting fate that way. 

And I know that while my life feels like living inside a tornado - you know, all spinning out of control, feeling sick with anxiety and as if you've landed in some foreign land - it could be worse.  For many, it is worse. 

So I'm practicing deep breathing, snuggling these sweet, crazy little Tasmanian devils as much as possible, writing to you guys and running again.  Oh and I have my very first ever therapy appointment on Tuesday.  Way overdue on that one.

Thanks for checking in on us, cheering us on, sending good thoughts out into the universe, prayers up above and all of those comments, emails and phone calls have truly made me feel loved.  Couldn't do it without ya!

Wednesday, February 26

Unexpected Events

I've started writing this post officially only once already but I've been writing and re-writing it in my head constantly for the last 36 hours.  And yet still I can't find the words.

Likely in large part because I'm still processing the events of yesterday.  I was so completely blindsided that I feel like someone smacked me and I'm still reeling as a result.

On to the story, I suppose. 

A little background is usually a good starting place.  Bryce began seeing a new neurologist at Texas Scottish Rite Children's Hospital in Dallas about a year ago.  We've been overwhelmingly happy with the change.  Never looked back once - not in the hours spent driving to and from, not during the long nights alone with Bryce in Dallas hotels, not once.

At one of those previous visits it came up that Bryce had never (at least not since leaving the NICU) had a full, sedated MRI of his brain.  We discussed the fact that the results wouldn't change his treatment plan - or Bryce for that matter.  But might be helpful if down the road he began having seizures or some other issues, it would be good to have a baseline MRI for reference. 

And so back on January 7th, Bryce and I loaded up for Dallas and a sedated MRI.  The next morning went smoothly and quickly and we were home by mid-afternoon.

A week later I received a phone call from our neurologist's nurse explaining that the doctor wanted us to know that he had seen the scan results, that Bryce's shunt was functioning well and that there was significant brain damage, to both hemispheres, but nothing unusual and we would review the results with the doctor in office at clinic in February.

Well, that day in February was yesterday.  And in hindsight I'm fairly certain the doctor had seen the scans but had not actually studied them until quite recently.  Probably in preparation for our appointment yesterday.  But we weren't looking for anything or expecting to see anything unexpected, so why would he have?

The beginning of the appointment went as usual.  The nurse comes in and asks a bunch of questions to the tune of what's new, what's his schedule, therapy schedule, any pain, blah blah blah.  She then relays that information to the physcian's assistant who comes in and chats us up for a few minutes before sending in the first therapist. 

Occupational (fine motor skills) therapy came in and took measurements of Bryce's range of motion in his hands and wrists.  We had a good long talk about some things we might try to get him more independently dressing himself (wouldn't that be nice) and she gave me some very useful printed information on key guards for iPad communication apps that we previously thought didn't exist.  All is dandy.

Next we take Bryce to the big office area/nurse's station behind the exam rooms so they can take video of him walking.  We do this every time and it reassures me that they are paying attention to, tracking and measuring every single thing I think they should be. 

Meanwhile, I see the doctor for the first time while the whole team and a bunch of other strangers watch Bryce follow me from one X to another X and back, and back again, and so forth for about 8 round trips videoed from two separate angles. 

I overhear the PT (physical therapist - gross motor skills) saying to the OT that he bets Bryce can walk a couple of feet on his own.  After the video he asks if he can and Bryce is more than happy to oblige, i.e. show off.  Every one is very impressed and we return to the exam room.

The doctor follows us in, makes some short small talk and then asks me to come back out with him to the computer, "there are some things we need to talk about."  Ominous.  Surprising.

I grab my notebook, pen and Bryce and start heading that way when the physcian's assistant offers to take Bryce so I can focus better.  Clue number 2 that something else is going on.

He's happy to go with her and the OT to play with stickers and flirt.  And I'm happy for the opportunity to take proper notes.

We begin reviewing the MRI and the damage to Bryce's brain.  The cerebellum is "reduced in size."  It controls coordination and balance.  I can clearly see the area that it is supposed to fill but doesn't even come close to. 

Dr. Delgado explains that the fact that Bryce can get out of bed or sit up is astounding and the fact that he is able to take independent steps is proof of the plasticity of the brain.  He cannot be using his cerebellum for coordination and balance, there isn't enough of it left for that.  He has figured out a way to rewire his brain to use a different part of it to control his balance and coordination.  I take this as truly fantastic news!  I see this a proof that there is hope that despite the severe damage to his brain, he has the ability to overcome so much, to do so much.

The doctor goes on to explain that there is scarring to the white matter on both sides though the damage on the left (which controls speech and the right side of his body) is more significant.  The brain hemorrage (bleed) he had just after birth was worse on that side and his right side is his weaker side, so I'm not surprised by this.

Bryce's brain bleeds were an Intraventricular Hemorrhage

He had a Grade 3 bleed on his right side and Grade 4 bleed on his left.

And to further demonstrate how truly amazing he is (I'm not biased, it's science y'all) - you can see he had a 50% chance of surviving and 0% chance of not being handicapped.  He has overcome so, so much.

There are some cysts in the center of Bryce's brain, probably where the bleed began and nothing that we need to be concerned about.

His corpus colosum is very thin, because both sides of his brain have damage the pathways have been negatively effected.

The corpus callosum is the bundle of brain fibers that connects the two sides of your brain.
His left-side brain stem is smaller as a result of his prematurity.

And then he finally gets to the thing I've been wondering about. 

There are several images on the screen, one showing the profile of Bryce's head with an arrow referencing the depth that the detail view shows.  MRI's take "pictures" in layers from top to bottom.  But the biggest and center image, the one that he hasn't touched or talked about, or changed, has a spot marked with a measurement of 6.82 mm.

He explains to me that this is Bryce's pineal gland.  That it is too big and there is fluid inside.  He is "very concerned" about the mass of it and it's important that we have a follow up MRI in six months. 

We need to see if it is growing.  And if it is then it's a tumor and we'll need to have it surgically removed.

Heart drops from chest, blood leaves face, room starts spinning, eyes begin watering and I am completely and utterly dumbfounded.

Did he say tumor?  Are we seriously talking about brain surgery again?  Very concerned?  What is happening?

Don't cry, don't cry, don't front of 12 strangers staring at you while your being delivered unexpected and down right crappy news.

Pull yourself together.  Immediately.

I was able to get out only two questions.

How big should it be?  About half the size it is. 

Do we have anything to compare it to?  A CT scan from Sept. of 2011.  But the image quality is extremely poor and while he can't see the gland on it the radiologist reports that he can and that it was 5.8 mm at that point.  But don't even take that into consideration because we can't really be sure that's it or that it's properly measured.  We need the MRI in six months so we can compare apples to apples.

And so here we are again.  Worrying ourselves sick over something we know nothing about, can't control ... and freaking brain surgery again!

I honestly had begun to feel like as we approach the fourth anniversary since Bryce's last shunt revision that brain surgery was a thing of our past.  I had started to let myself hope and imagine that his shunt would continue working and working well for years to come.  That he would be one of those kids the neurosurgeons tell tale of, the ones that go decades without anything but an annual check up.

Don't get too comfortable.

PTSD?  Me?  Maybe just a hint.

Wednesday, February 19

Life After the NICU

Bryce and I have been working with videographer, Whitney Milam, for the last few months on a special PSA video for Hand to Hold.

The title is Life after the NICU and the idea is to give a realistic view of what a day in the life of a NICU graduate can be like.

We shot several hours of video spread out over several different days and locations. 

I said a LOT of stuff, most of which was either useless, dumb or repetitive. Thank goodness editing has me sounding moderately intelligent and with it! ;-)

It was impossible for me to know what the end product would be like even though I was an integral part of it. So I'm pleased to say that I think it's fantastic. And I hope you enjoy!

Tuesday, February 11


Bryce took his very first independent steps last summer while we were in Michigan for the Conductive Learning Center's summer camp.  We were at the toddler play area at the mall and if my dad hadn't happened to have been standing right next to me, witnessing them, I truly wouldn't have believed my eyes.

As with all things Bryce, progress is steady but exasperatingly slow.  And since those steps he's continued to stand all by himself more and more, with increasing success and confidence.  He's also continued to work on taking a step or two and more recently 3 or 4 and, just very recently - and only very occasionally - as many as 5 or 6.

Try as I might, getting this on video has been impossible.  He'll do it once, completely out of the blue and then fall trying to do it again for the video.

BUT today, I finally got it!  So now that it's captured on video, posted to the blog and will soon be shared to Facebook, it's officially official - Bryce is taking steps!

(By the way, please don't judge us but we like to rock out before bedtime - hence the very loud background music - wink, wink)

I can't even express how joyful and grateful this makes my heart, y'all.  To be completely honest, there were months, years really, that I didn't know if Bryce would someday walk on his own.  Last summer when I saw him take those first steps I thought ok, he'll walk some but probably still need a walker or canes.

But seeing the fierce determination in his sweet little face when he's taking those fought and fraught for steps gives me new found hope and optimism that maybe someday he'll walk - really walk.

It's not like I think the end all, be all is walking.  It's just that life is harder if you aren't an independent walker.  Bryce's walker prevents him from walking on the playground, walking in and out of our front door, getting onto the bus by himself and so much more.

And as his mama, I think he has enough hardness in his life.  Wouldn't it be nice if this particular struggle was a part of his past?  I think so.

Wednesday, January 22

A New Look for a New Year

Just a quick note today to unveil the new look of the blog.  There are still some tweaks I'd like to make but time is of the essence (read: I have none to spare).  But since I'm rededicating myself to the blog I thought it only fair that it have a fun, new look to keep me motivated.  I hope you like it and it makes you want to come back again and again...and again!

Also, the Valentines fundraiser is doing fantastically!  I will probably have to stop taking orders soon so if you're interested please use those fancy new buttons under my picture on the right to get in touch.

Lastly, I created a new Facebook like page for all things related to fundraising for Bryce to return to the CLC summer camp again this summer.  Please hop on over and like it!

With love & appreciation,

Tuesday, January 14

Hello 2014!

Wow, where did last year go? I don't know exactly but it's gone and I'm honestly excited for 2014 and what it has in store! A friend and I attended a Carrie Contey workshop on Sunday entitled Creating Your Best Year Yet. 

It was a great day of me time and got me totally psyched about the new year.  I've set several goals, created a new paradigm and listed the lessons I learned from 2013 to help me stay focused and positive in the new year.

One of my disappointments from last year was neglecting to write more and blog more.  Yes, yes they are the same.  But for me they are also different.  No matter though.  My point is, I'm back y'all!

So much stuff is going on in our lives that sometimes it's easy to let ourselves fall to the bottom of the totem pole.  Sharing our story, our struggles and our triumphs, here is cathartic to me.  It's the cheapest therapy there is.  And the community that rallies behind us never ceases to amaze me.  Of course, I've always held hope that my words might reach another family in need at just the right time.  That would make it all worth it.

But let's be realistic too.  The to-do list is long and always growing, we're just as busy as ever and all these kids (you say there's only two but sometimes it feels like there's 100 - trust me) need me.  So I'm vowing to update the blog once per week.  I'm so noncommittal (actually, I prefer to think of it as setting myself up for success in the New Year) that I won't even promise a certain day of the week.  But hey, baby steps, right?

One of my other goals for 2014 is getting Bryce back to the Conductive Learning Center's summer camp in Michigan this year.  The benefits were beyond my wildest hopes and I sincerely feel like he's doing so much more this year already - well, who knows how he'll benefit this summer?!  Excited? Me?  Just a whole heck of a lot!

With that being said, we've started our first couple of fundraisers already.  A dear friend is collecting gently used children's clothes and toys to sell at the Just Between Friends Consignment Sale in Georgetown in March.  We'll be getting together this Saturday to hang and tag items that are donated for sale.  And probably at least once more before March.  I'm eternally grateful to Michelle for coordinating this fundraiser!

Secondly, I'm doing a small fundraiser which actually helps satisfy two of my 2014 goals.  I'm raising money to get Bryce back to CLC by being creative: selling custom, handmade and personalized Valentines.  If you have a little one who could use some feel free to email me or Facebook me (see contact) for more information.

See you again next week and cheers to a wonderful 2014 for all of us!