Keeping up is hard to do

That's a good thing, boys and girls.  It means things are nice and normal and there isn't anything urgent to report.

We created this blog so that those we love who are not near could share with us all the details of Miss Zelie's beginnings and all the related issues.  We've done that.  Now that the details of her life become more personal and more mundane, this seems less and less a valid way to share.

So, I'll give you the quick rundown and then we are going to put the blog away for a while.  There are so many good blogs out there to follow if you want info about Spina Bifida or just about motherhood, there's no need for us to jabber on about us.  Some of my favorites are here, here, here and also here and here.  Give them a look!

Zelie is doing spectacularly well!  She is growing well with no more worries about hydro.  We recently paid a visit to both Orthopedics and Urology and they are also are totally happy with how well she's doing.  No bracing or other gear needed at this time.  We continue with PT/OT on a weekly basis and she's progressing well there.  We are just approaching some major gross motor milestones (crawling, cruising and walking) and are eager to see what she'll show us she can do.  Her most recent adventure has been the discovery of a food allergy, complete with terrifying anaphylatic reaction.  So if you are reading this and we ever come to your house,  no EGGS for the baby!  Otherwise things are only abnormal in direct proportion to the over the top cuteness that Miss Zelie wields to her best advantage.

We are so very grateful that this is all there is to know.  I won't be deleting anything here for a time, but it is time to say farewell for now.

Thank  you, all of you, for all your love, prayers, your concern and your interest.  We have been overwhelmed by all of you and carry you forever in our hearts and speak your names in our prayers.

Bubbles and Baby Shoes

Oh my goodness!  Yesterday was my wedding anniversary.   Mr. K came home early from work (Surprise!) bearing handmade truffles and champagne.  He is my favorite.

When I look back over these years, all I can say is what a sweet life!!

Now, as promised, here are photos from our trip and recent days.  You don't really want all the gory details of what it is to sedate an infant, to get hassled at Penn Station and so on.  So here are all the best parts - train rides, hair do's and little knitting projects.  All the important stuff!

Happy weekend, all.  Time for more champagne...

Home again. Home again. Jiggity Jig.

Well home again anyway.  I'm not sure I'm quite ready for dancing a jiggity jig.  Mama is still pretty wiped out!

The train was a great way to go and was mercifully on time or early at every turn.  I guarantee you "first class" air travel has got nothing on a sleeper car and a good porter!  Boston was completely beautiful.  And, most important of all, Zelie's tests confirmed that her brain is stable, the procedure worked and her body is managing itself without the need for a shunt.

Can I get a "Praise the Lord" somebody?

For now, that's all I've got.  There were a lot of details between Sunday and Friday that were exhausting for mind and body.  I'm still decompressing.  I'll be back soon to share a bit more in words and probably pictures.

Right now the coffee is singing to me and I must go listen...

One size

Only a measly 72 hours or so before we leave to go to Boston.  In preparation I have purchased those new fangled disposable sorts of diapers (no good place/time to wash our wonderful cloth) for while we are away.

Guess what I discovered?  My two and a half year old and my six month old wear the same size.

That is all.

The Doctor is In

This past Friday was our first visit to "Clinic".   It's a couple of hours away, so Daddy took the day off and we made a little road trip.

What is clinic?  Its a big 'ol doctor party!  Kind of like Go. dog. Go!  only without the tree and the fun hats.

Instead of a tree, we had a seat in a very large exam room.  Here's who came to see us...

• Orthopedics - Don't read too much about Spina Bifida.  She's doing so well that we will treat her just as we would any typical child. 
• Physical Medicine and Physical Therapy - Wow!  That's a lot of movement! Keep working on those hip flexes and kicking those feet.
• Social Services - Everyone happy at home?  - You bet, Lady.  You bet!
• Urology - Pressures seem good, nothing concerning right now.  We've scheduled for some new bladder images later this summer.
• Neurosurgery - Um... her head measurements are off the charts! Somebody grab a growth chart. OH.  Ok. So is the rest of her.  - That's our little Buster. They haven't made a growth chart that can hold her!
• Developmental Pediatrics - Is she social? Does she smile?  How well does she grab things?  Transfer them from hand to hand without a pit stop in her cute little mouth?  - Mr. we have got that all covered!

And what did J do all this time?  Trains.  He watched trains running many floors below us.  Trains. Trains. Trains.

After all that, we do have some follow up later in the summer.  Orthopedics, Ophthalmology and Urology all want to see her again; protocol, nothing more. 

Then we went home and spent the weekend being grateful.  It looked like this.  Parking was limited...

But the games and the smiles were worth it!

Now we are just counting down the days until Boston (and more Trains. Trains. Trains.).

Because its not all fancy medical talk around here

I think it must seem to some as if everything involving Miss Zelie is medical in some way.  Not so.  She's an actual little person not a diagnosis with curls. (Have I mentioned how we love her curls??)    There is extra medical stuff, its true. There will be more medical updates here too, but for now its just plain 'ol baby fun all 'round.

See?

Napping on the Farm

Racing Dad:Everyone Grab a Chair:Sunshine Snoozing

Happy Tuesday!  Hope you're week is as sunny and speckled as ours.

Now where did that mix tape go??

Happy Friday!

I'd love to say that things have been so quiet on the blog because they've been so quiet at home.  In fact the inverse is true.  It's been quiet on here because life with our littles is madness.  Daily and hilariously so, but madness.   

Playmates:Raspberry Practice:Naps:Bubbles & Boots

We continue to email our good surgeon in Boston weekly head circumference measurements.  His replies usually contain comments like, "Just a little ahead of the normal curve", and, "Seems to be growing slightly faster than what we typically see".  Now don't be too alarmed.  Remember that trip to the ophthalmologist, the one where there was no pressure on her optic nerve?  No pressure means no build up of pressure in her head.  Her other signs of well being are all perfect.  No, I think little Zelie's issue is that she just isn't that little!   Just look at those beautiful rolls and creases!!

Zelie currently is the 95th-plus-a-smidge percentile for weight and the 75th for height.  She wears  is outgrowing 6-9 month clothes.  She is not you're average almost-5 month old cub.  So it is reasonable that her head should keep pace.   

In any case, we have planned all along to return to Boston at the 6 month mark for some follow up imaging.  Those plans are now morphing into tickets and reservations and people scheduling time off and the like.  This time it is Aunt Honey who'll travel along and instead of driving we're doing this.

Very exciting!  Even though J has been on a train before, he won't remember it.  I can't wait to see his brilliant little face light up and those huge, saucer eyes spin around trying to take it all in.

In truth the whole trip feels more like a vacation, maybe a reunion, than anything medical. Not only do we have nothing but love for our surgeon, but a return to Our Lady's Basilica, another meal in the North End and summer weather that feels like spring all add up to that delicious feeling of something good on the wind. 

The reality of going back to Boston has me remembering, sometimes re-living, our first trip there.  I've been looking at old posts here, rummaging through all the photos we took then, thinking, praying and ultimately I can draw only two conclusions. 

First, in Our Lady's words:

    The Almighty has done great things for me and Holy is His name.

And second, I'm married to a Superhero ya'll - mild mannered day job, glasses and all.  A true, for real, can fly through the night, Superhero.  

That's all there is.  What else could a girl even want?

The adventure continues

Miss us?

We've been settling into "normal" here, whatever that means.  Actually with the double twos (a 2 year old and a 2 month old) it means we've been doing a lot of cleaning of little bums and big spills, randomly changing our sleep patterns and daydreaming about what it might be like to eat a whole meal without interruption.  We've been rescuing the cat from little hands and little hands from all the many risks they like to take, kissing bumps and working on the perfect recipe for "coffee milk".  We've also been having the time of our lives.  Yes, its exhausting.  It is also hysterically funny, breathtakingly touching and the best kind of crazy.

With all that going on it is easy to think that Miss Zelie's diagnosis is a thing of the past and we are "done" with the need for concern around it.  That just isn't so.  Her condition is as much a part of her as her wacky little dark curls.  She is certainly suffering no ill effects from it just now, but there is much to watch for as she grows. Nothing to be alarmed about, but much to monitor. So...

Last week we made a trip to Jacksonville to meet with a more local Neurosurgeon.  He and our surgeon from Boston have corresponded about our gal and will continue to do so.  He was very pleased with Zelie overall.  Her head is doing very nicely. And, though it measures in the 95+ percentile, so does the rest of her!  (The pediatrician's PA pronounced her the size of a 4 month old!)  Happily that means everything is charmingly proportionate with everything else.  This is a very good thing.  

We left that appointment with a date to return for our first clinic visit and a referral to pediatric ophthalmology.  Clinic is just a nice way for us to be able to see all the specialties we need to follow up with regularly at one time and place.  We don't yet know what sort of frequency will suit her needs best, but we are looking forward to our visit, which will be in early May.  Ophthalmology is just one more area where we need to get an initial check and baseline.  She's been ever so slightly slow and inconsistent in her visual tracking.  The trouble with hydrocephalus is that it puts pressure on all areas of the brain.  While her's is under control now, the initial pressure could have had some impact on her optic nerve resulting in these delays. It could just as easily be the "all babies are different" factor, but we want to check.  As with all interventions, earlier is better. 

Speaking of early intervention, for those who are curious about "what else", we currently have weekly visits with PT and bi-weekly visits with acupuncture.  PT is largely preventative maintenance at this point.  We work to ensure that she's stretching all the muscles and joints that tend to be problematic for this diagnosis in general.  We do some intense tummy time!  And it is already evident that anger makes our girl work harder and stronger.  Acupuncture, for you non-hippie types, is addressing the healing of the deep tissue in her back and her overall continued well being.  The results there have been nothing short of astonishing.

We also took both babies to see the pediatrician last week.  Regular checkups all around!  Joseph was not a fan of being denied his pants while being inspected from head to toe by some strange woman with cold hands.  Zelie couldn't possibly have cared less.  Both kiddos were declared healthy and adorable.  

This week is set to be a bit less eventful.  We do have a very exciting play date planned with another sweet baby who shares our diagnosis.  We plan to make good use of the park nearby, enjoy the sunshine and our new friends.

Here's hoping you have equally wonderful plans for your week too.  Happy Monday!

Roll Credits

Its our one week homecoming anniversary today.  I  hope you'll forgive us being a bit quiet, but there has been a lot to do to really settle in.

Not the least of which was Zelie's first visit to the pediatrician.  All went well.  She charmed him as she has everyone.  Her overall health is perfect.  Her height/weight stats put her at roughly the size of a two month old.  The doctor seemed a little surprised (pleasantly so), but mama wasn't.  Carrying that baby around constantly, she already had a pretty good idea of just how robust our girl is!  Some plans were made for future visits and follow up imaging requested by the surgeon and we were sent on our way.

And that brings us to the close of this first chapter of our Zelie's adventure.  It is certainly not over.  We've just begun to get a peek at all the wonder of the person that our Zelie is and will become.  There will be more entries here as well.  But having reached the end of this first phase, I wanted to pause to say some specific words of thanks.

First, and above all, we are thankful to Our gracious God who saw fit to gift us with another soul to love.  This has all been His doing, one way or another, and we are still awed that He chose us as home and haven for this little one.

To our dear friends who came to our aid in person, keeping J, cooking for us, hauling around laundry, putting up with Mr. K's painful Boston accent imitations and the uselessness of a very pregnant Mrs., thank you does not say enough of what we mean.   We would not have made it without you.

For those of you who came to K's aid while we were gone, treated her to dinner, kept her company and otherwise entertained her.  Thank you.  To one particularly special someone, and you know who you are (Aunt Jenny) who happily took on more than she realized, and who kept it together when the realization hit, for all your time, your sacrifice, your patience and your unflagging kindness, we are forever in your debt.

To those of you who knew Boston first, who made contacts for us, made recommendations for dinner and safe neighborhoods, who opened doors for us literally or figuratively, thank you.  You made what could have been a cold and confusing ordeal accessible to us.  Thank you.

Though they won't read this, I couldn't publish it without saying thank you to the many wonderful doctors and nurses, priests and chaplains who cared for us in Boston.  I could write a long time about them, each by each.  At every turn we were met and cared for by genuinely warm, exceptionally competent persons who welcomed us as we were and applied to our situation all they could.  I hope to be like them and consider them proof of Our Lord's mercy.

There are several of you who contributed out of your wallets.  We have been, frankly, astonished by the generosity of so many.  When we were tempted to worry about all things financial, your largesse helped keep our heads clear and focused.  You helped us shoulder a great burden.  Thank you.  Thank you.

To all of you, for your cards, your phone calls, your endless prayers, for checking in on us here or through friends, I want you to know you made a difference, a tangible difference.

We thank you.  We love you. We are carrying you all in our prayers.

Home Sweet Home!

Home at last!

I forgot we even had cats, who very sweetly greeted us upon our arrival.  The house looked great; it even has a Christmas tree!  Of course it needed my wife's very own magic touch to make it feel like home again.

The van is unloaded, but we are far from unpacked.

We ate some yummy soup and bread that was waiting for us and uncorked a chilled bottle of bubbly.  We have the best of friends looking after us.

We then proceeded to rounds of diaper changing and baths.  I forgot how to turn our bath to hot water (its backwards).  We've been gone such a long time, we've forgotten the little idiosyncrasies of our wonderful little house.

I got a hot shower, determined that we probably need a new towel rack and went straight to sleep without a thought or a prayer.  Who knew we had so many comfy pillows?  I can't overstate the luxury of laying down in my own bed after two months and letting the magic powers of sleeping babies take me with them.

Today, we remembered that our son loves our cats. There is a special giggle reserved just for petting cats.

Zelie slept in this morning, which just means she realizes that she is home too.

Mrs K. is thrilled to be home, but will be even more thrilled when everything is put away.  She's done a remarkable job so far, despite both our children wanting her full attention at any given moment.  Luckily for her, they think daddy is an okay pillow for up to 30 minutes at a time.

No more town lines!

Every place has its quirks. You won't find city limits in new England, but rather town lines. I think it's silly l, but there it is.

Finally this big adventure takes us toward home, but only so far as Pennsylvania. Happy new years eve from our clan.

I'll think of a mermaid lagoon!

All it takes is faith and trust.  Oh! And a little bit of Pixie dust.

Which is to say, we got a very good report from our very good doctor today.  A few measurements, another series of images and some discussion of follow up, and we were sent on our way without reservation.

Which means...  HOME!  Tomorrow we start the trek home.  It will take a few days.  Travel with little ones is not best done at a grueling pace, and we plan to stop on a couple of different days to visit family along the way.  But tomorrow we leave and start heading back. The van is packed and the early alarms are set.  Daddy and I are so excited we are almost cranky about it all.

There will be more entries here as we travel.  There is a bit more to say, but right now I have to go round up some of that Pixie dust.  C'mon everybody!

The Red Lights, They Mean Nothing

So this actually happened a few days ago, but I got honked at for stopping at a red light. Then I was quickly passed by said honker. Honking is quite normal. Now, Boston driving really hasn't been that bad, but there are quite a few odd things that I still don't understand. Red lights are run by taxis and citi buses during the "pedestrian time" if no pedestrians are present. Also random U-turns and three point attempted U-turns are quite common.

J is ready to be home. We're at roughly three melt-downs a day. They start with as little as put that thing down or stop climbing behind the TV. Aside from the toddler stress, he's doing quite well and even got to run around the mall kid area like a maniac yesterday. He even built up enough confidence to go down the 2 foot slide head first a few times.

Momma is doing well. She is also ready to be home. She went ahead and packed up 3 suitcases today and I packed them in the van. I guess I'm ready to go home too.

Now, the lady you've all been waiting for, Ms. Zelie. She is doing great! All cuteness all the time. She makes great faces while napping including smiles, pouts, "oh-my" faces, and kissy faces. She's eating well and sleeping well. She got a belly button for Christmas! It took forever, especially compared to J, but the wait is over and the belly button is super cute. It's an innie. Now the belly button is there she got her first proper oatmeal bath treatment, which she quite enjoyed.

Merry Christmas!

A quick post here to wish each of you every blessing of this sacred season.  As I have said before, we would never have gotten this far if it were not for the gift of so much love and support.  Thank you!

For those of you who have asked, no, we didn't expect to spend Christmas here when we set out.  But yes, we have had a wonderful start to the holiday.  We attended a beautiful vigil Mass last night and had a magnificent dinner in the warm embrace of friends.  There was good cheer in word and glass a'plenty.  Today has been still and peaceful, cuddled up with kids and sweet treats.  Now that the little ones are napping, Daddy and I are happy in the quiet, amazed at the beauty of the life we've been gifted and gleefully planning the trip home.

Merry Christmas, one and all.

C'mon Teddy

...we are busting out of this joint!

Yesterday, after she was released from the postop unit, I came back up with Zelie to her room and got her settled.  She was still sleeping, so I gave her a kiss and headed out for a bit.  When I left her, she was peaceful and alone.  Apparently she looked a little too alone to someone because when I came back this guy had crawled up into bed with her.

We have no idea where he came from, but are glad he was there to keep our girl company.  

Today they discharged us (at last!!!!) and since he didn't have anywhere else to go,we brought him along with us.  

I hope that you are all home and warm tonight with someone sweet to snuggle.  I know we are and we are immensely thankful.

Common sense for driving in snow

I know a lot of you are worried about us driving around in snow and ice conditions, but I'll have you know I did some research and it confirmed what I already thought; just use common sense.

The first rule of driving in snow and ice is simple: The less time you spend out in ice and snow conditions, the safer you are.
Drive faster to reduce your risk, otherwise you'll just be spinning your wheels.

The second rule is brake like you mean it:
Applying the brake firmly and quickly let's it know you mean business. The snow and ice won't have a chance to stop you.

Yes, yes. The puns are terrible, so be glad I couldn't think of any more.

You might get a charge out of this

Zelie had her ETV procedure yesterday and it went perfect.

She's doing so good that she'll be discharged TOMORROW!

What's in a name?

So I know several people want to know more about Zelie's name. So here it goes.

What does it mean?

It is a variation of French for 'solemn'.

Why did we pick it?

That is a loaded question, so I'll just say we are really fascinated by this particular Saint. Marie-Azelie Guerin Martin is a fascinating individual, who was very influential in the lives of her daughters who all became nuns (some became Saints). She originally wanted to become a nun herself, but was turned away due to medical reasons. Zelie became a lacemaker and prayed to God for children so that they could be consecrated to Him.Wow. I mean, just wow. We can't help but marvel at the impact of her life and devotion.

Not a Private Room

I see that Daddy has been keeping everyone up to date on the medical front.  There really isn't any more to tell in that regard.  We are still waiting for Tuesday and surgery and hopeful that those things will bring our hospital stay to an end.  More on that as we know it.

In the meantime, there is something else I wanted to share.  The floor of the hospital on which we are staying is in the throes of moving.  Soon they will be in a shiny new wing, every room will be private and there will be proper beds for moms or dads, rather than the current cots of chain link fencing.  God willing, we will not be there to see it.

As it is now, most of the rooms are shared.  And, when the room is not private, neither are the worries and stories of the folks inside.  That has been a little hard.  Not because we worry what others may think or know about us, but because we begin to know them and to feel the weight of their struggles added to our own as they crowd into the corners and pathways of the one small room we both occupy.

In this Advent, this season of waiting, we have been waiting in a way that has before now has been unknown to us.  Before now the season of Advent has been one of reflection of preparation by meditation and self chosen penance.  This year there has been only the hard, numbing slog of actual, physical waiting.  A waiting that often closes the door on meditation and such like, insisting on its own course. In that, the waiting, we have found ourselves waiting, not alone, but with every other family that has shared the room.  There have been several.

Their stories are not mine to share, but as you prepare hearts and homes for Christmas this year I hope you will share some of the generosity that you have showered on us with those whose burdens have become mingled with our own.  The Louds, and the Twins, little Madison and Jacob and Mr. Scissors.  Some of them, most of them, have gone home now, though I doubt they are fully recovered.  Some remain on the floor.   When you stop to think of us, to pray for us, please spare a thought or word for them and pray that we will be able to shine some of the light of your love on those around us.

Holy Lasers, Batman!

Lasers indeed. Zelie is part of a little study that is using light to measure blood oxygen levels in her head similar to the one on her foot, but as part of a bigger study to see if they can correlate that to other aspects of health. We won't get any results, but are simply allowing them to take measurements. It's a harmless process, but I'm excited to see that they're working on ways to provide non-invasive measurements using optics.

Orthopedics came by and evaluated Zelie; they were happy with her and said she wouldn't need to see them again.

J went to the aquarium today for a fun little outing. Everyone else is doing great and getting ready for the snow.