He likes to move it, move it

Creeping along… – May 4, 2010

As far as gross motor development goes, this past week has been AMAZING for Connor!  I stand firm in my belief that wearing the helmet slowed his gross motor development (though the therapists at Cranial Tech disagree).  I have witnessed a night and day difference in the things that he’s trying to do now (just 1.5 weeks since graduation) – getting into a sitting position, tall kneeling, pulling to stand, cruising from one end of the family room to the other, going from his belly to his knees and creeping/crawling – these are all skills that he would only feebly attempt before, and almost always required intervention to even show interest.  Since the helmet’s come off, he’s even all over the place in his crib, and I’ve found him sitting in it once and standing in it another time (he never even attempted this while wearing his helmet).  He doesn’t hold still anymore, and we’re furiously trying to keep up the pace of baby-proofing the house.  Turbo Boy only needs about 8 seconds to get from one end of the family room to the other… and it’s a long room… SCARY!

In related news…

On Wednesday, we attended Connor’s FINAL NICU Follow-Up Clinic.  That’s right – he GRADUATED!!  :)  As it turns out, the only reason we had to go back was related to gross motor development concerns (physical therapy), so as each specialist filed into the room to take a look at Connor, they all pretty much said that they didn’t need to see him… the neo was very impressed with his progress in the last 5 months, and the speech therapist felt that he was nearly on track with his chronological age (which wasn’t to be expected this early or ever, based on his IVH history).  The physical therapist spent some real time with him (if 7 minutes counts)… had a few criticisms like before, but overall liked the progress he was making.  I think the fact that we’re currently in private physical therapy was all she needed to hear to sign off on him, and let us move on.  So, wahoo! – another set of appointments – ALL DONE.

His current stats, at 16.5 months old:

• WEIGHT:  20 lbs, 5 oz
• HEIGHT:  28.75”
• HEAD CIRC:  46.5 cm

Not thrilled about his current weight… this is what he weighed on the pediatrician’s scale 2 weeks ago.  But, given how active he’s been in the last week alone, I suppose I shouldn’t be surprised.  (We have him forward-facing in his car seat – because that’s the only way the behemoth contraption will fit in our car, AND it’s a convertible one – so the closer he is to the 20-lb. mark, the more nervous it makes me.)  I’ve got 6 more weeks to fatten him up, before his next weight check at the pediatrician’s office!   

Seeing as how we were already at the hospital anyway, we got to run into Connor’s adorable girlfriend, Natalie, and we decided to swing by the NICU to see some of our favorite friends.  It was fun “showing off” our BIG little boy to the people who took such amazing care of him for so long.  :)

Sometimes going to the hospital conjures up all sorts of unpleasant memories for Brian and me…  waiting to be buzzed in at the door to Mother-Baby, a lot of those emotions came rushing back.  They keep the NICU fairly secure, so if we want to visit old friends (primary nurses and staff), we have to congregate outside the entrance.  Brian and I both agreed it was much better this way… I don’t know if I would be able to go inside or ever be able to handle hearing all of the alarms again.

Which brings me to another thing… probably on a weekly basis, if not more often, we’re asked about when we’re going to have more kids.  Honestly, we don’t know what we’re going to do yet – we always intended to have 2 or 3.  I know neither of us is getting any younger, but we’re not ready to make any decisions about more babies.  Connor has made us feel more like a family since the day he arrived, and while he still needs the extra attention and care, it doesn’t seem fair to split our energies from him.  We overcame a very painful 2.5-year struggle with infertility before conceiving Connor, and the fact that he was born so premature, automatically puts me in a high-risk category of delivering early again.  And we’re not eager to revisit either situation right now.  We’re definitely open to adoption, but we aren’t  yet certain that we’re supposed to walk down that path.  So, I guess the answer is: We don’t know.  We trust the answer will come when the timing is right… but for now, we’re happy to relish every moment with our beautiful 16-month-old boy, Connor.

So PROUD and HAPPY to be his Mommy! – May 4, 2010 

Hope you all y’all have a wonderful Mother’s Day weekend!!

Klaar. Terminado. Fertig. Gotowy. Finito.

FINISHED!

And it feels soooo good to be DONE!

I’ll admit it, I’ve been a brat about this head re-shaping ordeal. 

Gone was my baby’s snuggly, sweet-smelling noggin… replaced with hard and painful plastic, stink beyond belief, nightly cleaning tasks, developmental delays, and MORE appointments to attend. 

I’ve done a lot of complaining about this helmet thing, and for that I apologize.

Boy, does it feel good to have it all behind us now!  :)

Anxious anticipation. – April 26, 2010

Because other people contemplating a helmet for their child might find their way to this post, to review:

Connor was diagnosed with moderate to severe brachycephaly with plagiocephaly.  (Torticollis was never a factor.)  We believe this occurred as a result of his prematurity and time spent in the NICU.  Due to his surgeries, he spent a significant amount of time intubated, and repositioning was not as feasible.  When you have to lay in an isolette and hospital crib for 4 months, flattening is bound to happen.

Connor had 2 DOC Bands from Cranial Technologies, resulting in 26 weeks of treatment.

To decorate both bands, I used vinyl decals from Bling Your Band.  I sealed his first band with DecoArt Sealer and then Mod Podge.  The second band was not sealed at all, and I’m so glad I never did – due to the shape of the decals, everything stayed on his band just fine.

Nightly, Connor’s band was scrubbed with a soft-bristled toothbrush and 90-proof rubbing alcohol.  Several times per week, we had to wash his hair with kids’ shampoo, just to help cover up the stink.  Occasionally, I left his band in the sun, to help manage the odor.  Connor also developed a few calluses on the top of his head due to band-wearing.

Connor did not wear his band the 23-hours/day as recommended by CT.  He averaged 20-22 hours/day.  To wear any longer than that felt like cruel and unusual punishment.  In no way do I feel the slightly shortened wear time contributed to his need for a second band.

If we did it all over again, I’m pretty sure we wouldn’t have gone with a second band… we would have quit with the first band (stupid mommy guilt!).  I’m not convinced that the minor changes we saw during the second course of treatment were a direct result of the band-wearing, but rather expected growth and maturation.  During the second band, Connor was able to sit and roll around, thus spending less time on his back, compressing his skull to flatness.  Plus, his current head shape looks much like his father’s and great-grandfather’s, so this is as likely as far as he’ll go in head shape-changing.

Getting giddy! – April 26, 2010

Connor graduated from his DOC Band treatment on Monday, April 26, 2010.  Daddy was able to attend the big event at Cranial Tech with us… and we were glad… because they needed to perform another DSi Scan and Connor enjoyed it even less than last time!  A final photo study was also done.  I’ll let the pictures speak for themselves (click on them to blow-up)…  

They actually adjusted his second band for us to get 2 more weeks of wear out of it… but we pretty much took it off Connor for good as soon as we got to the car (and then it had to go back on when they phoned a few minutes later after the photo study session had been accidentally deleted… poor Connor was so confused when we headed back in to do it all over again, especially after we’d been singing all the way down the elevator to the car the first time, '”WE’RE DONE, ALL DONE!!”)… 2 more weeks,  no thank you.  26 weeks was more than plenty!

So, now I’m not quite sure what to do with all this paraphernalia.  We’ve got both his bands, plus the heavy plaster head molds from which his bands were made.  I suppose at some point, years in the future, we’ll pull out these torture devices for Connor to see… and then I think I’ll throw them away!  

All in all, we’re PLEASED with his current head shape.  We’re happy we did the first band, slightly annoyed that we did the second band, and ECSTATIC that it’s all over.  :)

Happy, perfect baby boy – April 26, 2010 

The helmet comes off

... TODAY!!!!

I'll post more later - off to Cranial Tech we go!

Just 28 more days...

March 12, 2010

When I took Connor to his helmet adjustment appointment today, I casually asked the therapist how much longer she felt treatment would be.

Her response, “We’re halfway done with this band.  I’d say about 7 more weeks!”

Why The Face?!?! 
(Thanks, Hayley.)

So, I happily informed her that his treatment would end on April 27th.

Exactly 4 weeks from today. 

Connor’s Helmet Graduation Day, April 27th, will also mark 26 weeks of helmet wearing… half of a year.

That’s as long as I’m willing to allow this helmet to delay his development any further.  We’ve got to get this kid crawling already!  (And he doesn’t seem to move as much when he’s wearing it.) 

I caught a whiff of it this morning, and it’s just starting to reek.  I can’t imagine how bad it would smell… and make him smell… if he wore it into warmer months.

As it is, when he gets up in the morning, his hair is sopping wet with sweat caused by the helmet.  So gross!

Brian and I are happy with the progress he's made, and feel that the shape of his head now looks completely normal.

April seems like a good month to be done with it!  :)

15 months old

Connor had his 15-month well check last week.

19 lbs, 13 oz

27.5” tall

Exactly 1 month prior, at his nephrology appointment, he was measured at 20 lbs, 15 oz.  Allowing a bit for some discrepancies between different scales, it still means he's lost weight.

Pediatrician also measured him at only 27.5" again, same as in December... which is funny because the nephrologist had him at just slightly over 28" one month ago.... whatever. 

For his adjusted age, this puts him in the 5th-10th percentiles for weight and height...  and  his noggin is still in the 50th percentile.  So, he’s dropped since his 12-month well check.

He's definitely been more active this past month, with trying to move/crawl/scoot, but the pediatrician says that he wouldn't be expected to LOSE weight with additional activity.  (I disagree and kinda think it's a natural consequence, within reason, for babies.)

Too BIG! – March 20, 2010

So, we're working hard on fattening him up!  More snacks, bigger meals, and giving him a little "milkshake" (Pediasure) every day, too... pretty much it seems he’s eating all the time.  He's losing interest in the bottle fast (unless there's juice in it, and only if he's in the right mood), which is incredibly frustrating, because the kid wants absolutely nothing to do with sippy cups either.  He's now officially "allowed" to have whole milk, too.  He’s supposed to have more than 16oz. of fluid a day… and lately, we’re lucky to get 9oz. in him.  As you can well imagine, with a lower fluid intake overall, he's doing numbers on his pooping abilities.  There’s a strong possibility that this has something to do with teething, but only time will tell. 

Has anyone else’s kid weaned themselves from the bottle AND rejected the sippy cup?  What did you do??

He had to go back to the pediatrician this week for some shots (had a little cold last week), and I made them weigh him again, just to see if there'd be any pay-off for my efforts on Operation Fat.  Happy to report: 3 whole ounces!  YIPPEE!  :)  It's not much, but I'll take whatever I can get.

At his 15-month well check, the pediatrician did his 1-page developmental assessment and determined that Connor was pretty much right on track for his adjusted age, or even in line with his chronological age on everything but gross motor (the not crawling issue again) and SPEECH.  In fact, he decided that his speech development was that of a 9-month-old. 

This is really interesting, since his EI speech therapist had determined not 2 months earlier that he was pretty much in line with his chronological age.  I let the pediatrician know I did not concur, but agreed to take Connor in for a speech evaluation.  (And annoyed as all get out, because the last thing this kid needs is MORE appointments.)

So, this past Thursday was his speech evaluation.  At first, I was freaking out a little, because Connor seemed to be “failing” at all the tasks she was asking him to do…  feed a baby with a spoon, naming toys/objects he’d never seen before, etc.  About a half-hour later, we got to the interview part of the evaluation, and the speech pathologist seemed to like what she heard… and told us to come back for another evaluation in 6-8 months.  Happy! Happy! Joy! Joy!  We can do follow-up appointments, especially when they’re so spread out like that!  She had no concerns for him right now… he’s right in line with his adjusted age, if not a little ahead, based on his comprehension, etc.  She also seemed very impressed with his current eating habits, surprised at how well he’s doing based on how premature he was.  :)

This is how he rolls… – March 17, 2010

We’re doing okay with the helmet wearing lately…  I give him more breaks than I probably should, but can you really blame me?  Poor kid actually has calluses on the crown of his head from wearing it. 

Brian and I are planning his Cranial Tech Graduation Day for April 27th.  That would make for 11 weeks with this 2nd band… 26 weeks total of helmet wearing.  And, WE.ARE.DONE.  The areas the CT therapists are waiting to see if they’ll fill out are actually flat spots on Brian’s head, too… so, who’s to say it’s not genetics, and it can’t be fixed??  Only 3 more appointments, beginning this Tuesday.  I can’t wait! 

Connor is enrolled in physical therapy, just twice per month.  His PT wants to provide services until he’s walking… (which makes me weary).  We’ll see how fast he takes off once we get the crawling thing down. 

Overall, Connor’s been making GREAT progress!  Everyday it seems he learns something new…  roaring like a lion, hissing like a snake, “washing” his hands, giving high fives.  Even though his mobility is still somewhat limited, he does find ways to get around, and is keeping us on our baby-proofing toes! 

Slow and steady wins the race, right?!?  :)

Lately...

No major news to share here... 

thought the grandparents would like to see some of Connor’s recent pictures.

We've just been biding our time indoors until Spring officially arrives. 

Then we'll venture out some more; still avoiding crowds whenever possible. 

We can't wait!

We’ve since lowered the mattress in his crib, 

which should give Connor more leverage to actually pull himself to standing.

In our latest quest for sure-fire giggles, we’ve discovered 

that Daddy’s goatee tickles… A LOT! – March 8, 2010

Connor’s hair is definitely getting longer and slowly thicker! – March 7, 2010

Oh, the ways we entertain ourselves on gray, dreary days!

Ready to go OUTSIDE! – March 12, 2010

Father & son – March 8, 2010

First person to comment on this pop culture reference, gets… a SHINY gold star!  :)

Connor’s not yet crawling, 

but we’re working on sitting from a laying down position and kneeling.  

Physical therapy, now twice monthly, should start to help with that.

Planning for just 4-6 more weeks in the band…  shooting for 4!  

We’re still seeing little to no change in the shape of his head since getting the 2nd band.  As evidenced by these posted photos, I'm really trying to be diligent about his helmet-wearing... actually doing a lot better this second time around.  In retrospect, at this point in his treatment, I kinda think we shouldn’t have bothered with this 2nd band. But... ask me again in a month.

Feels like Brian’s traveling constantly these days (because he pretty much is!), 

so we’re taking advantage of family time whenever we can get it!

And, oh yeah...
"Mama" has officially been said, on purpose!

“Beautiful labs!”

February 5, 2010

Connor’s pediatrician called last week and uttered pure music to my ears…

“Beautiful labs!”

he exclaimed, about 5 times through our conversation.

“Duh duh durrr…” - February 11, 2010

A few weeks ago, I had given him a call to inquire about getting a full work-up done on Connor.  It had been awhile since his last round of lab work (early fall 2009), and I was very curious to see how he was really doing.  Not that I suspected anything, but I wanted to be able to put all fears to rest.  Any serious illnesses always have follow-ups, and I wanted to know that we were definitely in the clear on some of his previous issues (OOP, cholestasis, anemia, etc).  Knowing that we’d be making a follow-up visit to Connor’s nephrologist at Lutheran General in February, and that he would be ordering some of his own labs (urinalysis, etc.), I figured that particular visit would be our best opportunity.  Connor’s had plenty of “sticks” at our local hospital, where he was a NICU patient, but the poor kid has my veins, so he’s a harder stick than most… we usually end up flustering the phlebotomists.  Not wanting him to be a pin cushion because I was just curious, the lab at the children’s hospital was definitely the way to go.

Spaghetti – March 3, 2010

This visit to the nephrologist also called for another renal ultrasound (his last one was 4 months ago)… and this time I was on my own.  After having most of 2009 “off”, Brian’s back to being a road warrior, and his schedule called for him to be away for this particular appointment.  Lucky me.  (I had been blessed up to this point to have Brian able to attend these major doctor appointments with me.)



Connor’s at that handful stage right now, where he’s old enough to know what he does and doesn’t want happening to him, strong enough to wriggle out of whatever position he’s forced into, and feisty enough to let everyone know about it.  He’s currently around 22 pounds or so (and 28” tall), making him an armful, too… especially with not crawling or walking.

Little man - March 3, 2010

The ultrasound was… interesting.  I’m surprised she was able to get any still shots at all of his kidneys.

Still shots or not, the results were great!  The “densities” previously seen have dissipated and are nearly gone; leading the doctor to believe they were just protein droplets (and not calcium deposits – kidney stones).  His kidneys are still swollen, but that’s to be expected with his urinary reflux.

March 3, 2010

The nephrologist appointment was typical… except for the entertaining Connor, understanding nephrology-ese, AND taking notes part.  For now, he’s continuing Connor on the prophylactic antibiotic (which he’s been on practically since birth to prevent UTIs), holding off on a diuretic a little bit longer, and wanting us back in July for another VCUG, renal ultrasound, urinalysis, and follow-up appointment.  Perhaps by then he will have nearly outgrown his urinary reflux!

Hair! – March 3, 2010

Back to those “Beautiful labs!”…

Getting “stuck” this time around was ridiculous.  At the beginning, Connor was actually giggling through the first few tubes.  (I know… yay!)  Then they lost the vein and started to root around, and he lost it, too.  The phlebotomists ended up pricking his fingertips, which meant I was covered in blood by the time we rolled out of there.  Not a big deal, but it’s impossible to apply pressure to tiny, squirmy fingers!  And then there was the issue of removing his urine collection bag myself and trying to empty it into a tiny cup, while applying pressure to his fingers, and while keeping him from rolling off the table.  Fun times.

So, here we are at 14-15 months of age… and Connor’s blood work has finally come back to “within normal ranges”.

Normal.

I’m definitely still in shock… but, oh so grateful!!  At this point last year, we were just learning about all of these issues (1,2,3).  What a relief to not have to try to understand or worry about blood counts, liver enzymes, platelets, etc.

He really has come such a long way!!  (And we couldn’t feel more blessed.)

February 5, 2010

As far as the band goes, we just had our 3rd fitting, and by my count, there should only be 3-4 more fittings… or about 7 weeks left.  I can’t wait!  Any change to his head is definitely slower this time around.  The subtleties the techs are feeling are not very apparent or obvious to me or Brian, so it’s very discouraging.  However, we are determined to “hang in there” for the 3-month duration.

March 3, 2010

Hopefully this week will bring us a new PT schedule… there’s been some undesirable drama with the clinic we take him to, and the physical therapist we loved “is no longer there.”  So, we’ll be assigned to our 4th physical therapist since we started going last August.  Really hoping this is the last one, or else I’m going to have to take him somewhere new.

Connor also has his 15-month well-check coming up, where we expect he’ll be graduated from formula to whole milk (not that he has much interest in the bottle anymore).  And, we’ll be seeing his surgeon to talk about a hernia.

Busy. busy. busy!

February 5, 2010

“Second verse, same as the first…”

I’m attempting to post this tonight using Windows Live Writer… anyone have any experience with it?  We got a new computer for Christmas, and I’m still using it like it’s the old PC.  In fact, I’ve had Photoshop for over a year now, it’s finally installed, but I still use my old scrapbooking software and Picnik.  Sad.

Anywho…

We’re 2 weeks in to Connor’s second band.  Only 10 more to go!!

I’ve mentally committed us to 10-12 weeks on this band…  which means GRADUATION DAY should be around April 13th-27th, depending on how things are going.

Issues with the 2nd band have been minor, compared to the 1st band…  fewer fit issues, fewer skin irritations.  Connor has adjusted to it pretty well.  It’s nearly the same shape as the 1st band, just larger.

Cheesy grin – February 11, 2010

The good news is… we can QUIT this at any time.  Tomorrow, even.  And it wouldn’t be considered insurance fraud.  (I was worried that if we gave up too soon, we could be held liable.)

So, we’re hanging in there for now…  any change to his head shape is expected to be slow and less dramatic than the first time around.  We’re trying our best to be even more diligent about the amount of time Connor is wearing it - figuring that we do all we can now, and we’ll either shorten treatment time, or get the maximum benefit from the entire ordeal.

We decorated the band over the weekend.  Same design as last time, just different colors.  Same reasons as last time, too.

Moody blues. – February 21, 2010

Yep, kid…  that’s how I feel, too.

DOC Band Blues

February 10th marks the 15-week anniversary of the day Connor was first fitted for his DOC band.

February 10th should be the day Connor graduates from his DOC band.

February 10th will be the day Connor is fitted for his 2nd DOC band.

That's right... the day that should mark THE END of Life With A Helmet, is now going to only be THE HALFWAY POINT.

We're ecstatic, can't you tell??

So, after 15 weeks of helmet wearing, Connor still meets 2 of the 3 criteria that insurance deems necessary to justify treatment.

How far has he come? Two-dimensional photos don't really do his cranium justice. The photo study is an alright comparison of his current before and after.

Honestly, if we stopped this whole train right now, I think we could live with his current head shape just fine. His head looks better than it did 15 weeks ago, and my untrained and subjective eye really doesn't see anything wrong with his current shape.

Enter in Mommy Guilt.

That's the part I can't get over.
What if we stopped after the 1st band?
What's another 3 months (tops, or so they tell us) of helmet wearing?
What if his head was still so misshapen that it caused him grief later on in life... all because we couldn't make more sacrifices?

I'm tired of the 50-mile round trip drive to Cranial Tech every other day in the beginning, then once a week, then once very other week for the duration.  I'm tired of Connor's head smelling worse than a dirty bum.  I'm tired of fat lips and sore chests because he doesn't understand it hurts when he thrashes around.  I'm tired of worrying about the red spots on his head - are they serious pressure points or just his sensitive skin?  I'm tired of watching him struggle to get comfortable while he's wearing it.  I'm tired of scrubbing the helmet down every night.  I'm tired of worrying that helmet wearing is slowing down his gross motor development (because it is).  I'm tired of the tactless stares strangers give us.  I'm tired of dealing with it, period.

Enter in Mommy Guilt.

...{ pity party over }...

So, we're really happy to announce that Connor will be fitted for his SECOND DOC BAND on February 10th!

Last week, we were at Cranial Tech for Connor's 2nd DSi Scan.  If you remember, the 1st one went smashingly well.  Connor's a bit older now, so things didn't run as smoothly... (AKA total meltdown during the scan - as evidenced if you look closely at the pictures).  But, apparently it's more rare for kids NOT to cry during the scan.  It's always good to hear Connor's up to speed with everyone else.  ;)

Waiting for the scan to commence - January 27, 2010

The images that the scan ultimately creates are very cool.  They become a life-size version of your child in 3-D (so you're seeing a 2-D version of Connor in 3-D on the left).  They then take this image and create a mold (to be pictured on the blog at a later date), from which they create the helmet. 

See, the creation process is cool... the actual helmet wearing is not.  :)


A brief MSNBC spot on plagiocephaly and the process at Cranial Tech:

Visit msnbc.com for breaking news, world news, and news about the economy

So, here's to a speedy process the next time around!

We're hoping that the next 3 months will fly by, and since we know what we're doing this time, the whole experience might prove to be a little less painful!
(fingers and toes crossed.)

Wish us luck!