15 Month Update

Boy!  Have I been neglecting my blog updates.  :)

I have started back to teaching and that and my princess have been keeping me busy!  This morning she is playing with daddy on the floor so I have a moment to type. 

Its amazing how much Evangeline has grown and developed these last few months.  Spoons are no longer weapons of mass destruction.  She is so cute when she spoons her oatmeal into her mouth and chomps it with her four little teeth!  She is using a dynamic stander each day to help her bear weight and gain strength.  We were very lucky to have a pre-loved stander that has helped several other little kids on their journey.  It was loaned to us by a mom in our local spina bifida group so we didn't have to wait forever for insurance to pay. 

While in her stander Evangeline uses AFOs, (ankle braces) though when she starts walking she may not need them.  The jury is still out on that one.  Orthopedically she is doing great.  Her most recent urodynamics is still showing best case scenario as far as kidney health.  No reflux, low filling pressure.  She retains urine and has had a few infections but the uro doc still does not want us to cath.

Evangeline army crawls very well now and her "motor planning" continues to improve.  This is a skill that involves moving the upper and lower body in unison and how the child coordinates these movements.  With a little support around the middle she can four point at lightening speed.  We suspect that by the next month she may be able to four point on her own.  Her strength in both her upper and lower body is improving slowly but steadily.  

Her speech has been a little delayed (possibly because she has been making so many motor gains) but we have been working with her and she has added a few new sounds to her repertoire.  Once she mastered the B sound.  It wasn't long before she began saying "Bu-Bu" the name of her grammy's puppy (and her very special friend) Bubba.  Bubba is SO gentile and good with her.  Evangeline loves to share everything with him.  She offers him a toy and he generally refuses, but if she holds out a wooden block, he cant help himself, he'll have a good chew.  She reaches down and offers him food from her highchair, and he is so gentle, if there isn't enough of the food sticking out of her chubby baby hand, he will just put his nose on her hand, not wanting to take it.  Even at restaurants, Evangeline holds down food, just in case Bubba is hiding somewhere and wants to sample what she's got.  These two are inseparable.  She pats him and he comes when she calls.  They certainly are a pair!

As the speech therapist recommended, we are continuing to do exercises to help her become aware of all her facial/mouth muscles.  These exercises involve peanut butter and Evangeline thinks they are totally awesome fun.  Even though Evangeline can't say many words, she knows TONS!  We are already having to spell certain things.  (Bye Bye fore example!)  She adores going bye bye and you better not say the word unless its happening NOW! 

She is still her amazing happy self.  She still loves going to see her doctor friends and will be making a special delivery to many of them next week with thank you cards and Christmas brownies.   She still loves to giggle until everybody else is laughing.  She still adores music and dancing/bopping to tunes of all kinds.  She still grunts/growls in cute ways just like her daddy taught her to.

I guess that is a pretty solid update.  We hope everybody has a happy Christmas!!!

Everything I know about reality....

Everything I know about reality was taught to me by a schizophrenic. Seriously.  The details are a story for another time. Suffice it to say that my early experiences prepared me to see certain things in a different light.  Lots of people think "reality" means the same thing as "fact" or "truth".  I am of a different opinion.  Truth doesn't change and isn't altered by opinion. Facts are also not altered by opinion, though they can change with the discovery of new truth. Reality on the other hand is ENTIRELY based on opinion, is subjective and is, in fact, being written with every word we say and every thought we think.

Reality is simply what two or more people agree to and believe in regards to what they see, hear, feel, taste, touch etc. 

Example: If a schizophrenic hears a voice that no one else can; it is by definition, not real... as nobody else lives in that reality with him. I.E. nobody else agrees they heard an invisible albino anaconda whisper poetry from atop the television set.

As we go through our daily lives sometimes we live in a reality nobody else does and we don't even know it.  In other words, we can experience un-reality without ever experiencing a psychotic break.  Example:  In a class I am teaching, I can give a set of instructions for an assignment. 29 kids are paying attention, listen and respond to what I say. 1 kid is distracted when I am speaking. He hears me say something the others do not.  When the 30 children turn in the assignment at the end of the period, it is obvious the 1 student experienced a different reality.  His assignment is TOTALLY off the mark. If you ask him, he did as instructed.  He just happened to be the only one who heard that particular instruction.

So, you see "reality" is so subjective. It has nothing to do with what actually IS.  It has everything to do with what we perceive (correctly or not) and how that perception then influences our actions, words, conversations, social interactions etc.

I freely admit to establishing my own reality lots of times.  Especially wen it comes to my daughter.  And why shouldn't I?  Everybody else has their own version of her reality.  One PT believes she will not walk without HKFOs.  (Braces that go up to her hips).  Another PT thinks she may only need little braces that slip into her shoes in order to walk. One doctor believes she is "slow to respond" cognitively. Another thinks she's a bright girl.  If I listened to every reality out there about her, my head would be spinning constantly.  A long time ago, I realized that I would need to develop my own reality- based on facts I experience, and also on opinions I have formed.  That reality is that my little girl is capable.  That she is going to surpass expectations. That she is brilliant.  These things for me are real and are unlikely to change just because of some random individual whose reality is a little more full of grey clouds than my own. I KNOW who and what my daughter is and she is magnificent, thank you very much.

I want to say a big old sloppy thank you to all the friends and family who choose to actively participate in that reality with me. Its nice to have you here.  Please feel free to pet the unicorns and if you borrow the magic carpet, leave a note.  I love you all.  To everybody else, you are missing out.  Plus its gonna suck to be wrong when she walks down to receive that Nobel prize.  You might want to consider switching realities now in order to be mentioned in her acceptance speech. 

A comment on crystal balls

"I gave up on crystal balls."  is what Evangeline's doctor told me today during our appointment. He said it with a southern accent and a smile.  I smiled back, genuinely, because I expected that answer. In fact, its the same answer I would have given myself if we were sitting in different chairs....and really.... I knew my question was stupid.  OK, so as an educator, I can never really call a question "stupid", lets just call mine "ill advised".

So, what could I have been asking about to prompt my physician to explain his philosophy of fortune telling? The future, of course!  I wanted to know what sorts of options we might be looking at in a year in regards to Evangeline's potty training.  I KNOW that nobody can predict that right now, but sometimes it is of little consequence what you know.  Sometimes you are just going to blurt things out anyway.

By the time I asked my question, we had been at the clinic for over four hours and without realizing it, all the muscles in my body seemed to tense up with the passing minutes, wound up (as my Nana would say) tighter than Dick's hat band.  I never knew who Dick was, or why he wore his hats too tight, but surely that expression fit my mood today.  Having missed all her recent appointments, I forgot how the tension can weigh on your very bones.  How, the longer you sit there, the more anxiety you feel...with images of your future doing stealth ninja attacks, intruding on your present until the three-month-stale waiting room magazine in your hand phases into a kind of kaleidoscope with images of other, future, waiting rooms all chopped up and pieced together in a random, unbroken string. 

No, I'm not on acid.  I'm just explaining how to those of us with "special needs" children doctor's offices seem like places where time...linear time...is pointless.  We have been there before, are there now, and will be there again.  Its no wonder that things get muddy in regards to asking about the future.  We go there for answers only to be reminded that we are indeed bound by time and doomed like the mere mortals we are to wait for the knowledge we seek.

All humans crave knowledge.  We mistakenly believe that "knowledge is power". Those three words are the single greatest lie to ever be perpetrated on humanity.  Knowledge of the future rarely empowers anybody to do anything....except dread or dream or hope or despair. Just ask ol' Oedipus Rex.  He'll tell you the dangers inherent in seeking out an oracle. The true magic of human existence always happens right where you are.  In the present.  So, I'll just appease myself with waiting, knowing that a magic moment for my daughter will show up exactly when it is needed the most.  We will know what to do only when the time is right. 

For now, we do not need to introduce any catheterizing into her daily routine.  There is no reflux into her kidneys and her filling pressure is normal. On the down side, she is not voiding even half the contents of her bladder basically making a recipe for a petri dish of bacteria, but she has had no serious infections so we are holding steady.  It looks as though her bladder sphincter isn't too strong but it does function to some degree. My concern was and is for the future.  If we will need to cath her to help her with social continence before she starts school at 3, then perhaps we should start now so she will be used to it.  But the doctor is not certain yet what she will or won't need and so he has counseled us to stay the course.  It ain't broke, so let it be.

I tell you, just as I embrace the hippie thought process of living in the moment and taking things as they come, I let a moment of uncertainty or of waiting wind me up and I have to remember the truth all over again.  Crystal Balls and life simply don't mix.  Happy people know that "knowledge" about the future is just a Jedi mind screw. A trick to tempt us into chasing our tails to make the outcome into what we desire. The best knowledge and only truely useful knowledge is the knowledge of the moment. And right now, we know Evangeline is doing just fine.  And that's what matters.

My First week as a full time mom!

My first week home has been eventful and busy.  I attended my first PT session in months and learned how to support her body to help her learn to crawl.  So far its been frustrating for me and her (for me to see her try so hard) and for her…well to have to try so hard! lol  But I can see progress. 

 

We have begun the new “big girl” diet we got from the nutritionist. This is our first week on it; it has less bottles and no more processed baby food. Now she gets egg or yogurt or meat for protein and pretty much all the fruits and veg as she can chomp! We are watching her carbs to make sure they are healthy/whole grain to keep her from gaining any more chub.  At this point we want her to grow into her weight and so far so good.  She hasn’t really gained anything in the last 6 weeks or so but has grown another inch.  So, hurray baby girl and hurray us.  Keeping that weight down will help her in her efforts to crawl. 

 

She got a little case of thrush this week and we had to see the pedi to get some medicine to rub in her mouth.  And, of course, with the addition of more solid foods, we are having to adjust her milk of magnesia dose to make sure she doesn’t get “backed up”.  But so far, so good! 

 

She has certainly noticed that I am home more often and has decided it must be some sort of wacky, awesome perpetual weekend party.  I hear mom, ma, mom, mom, ma ma mum, mom, ma, ma…… well, you get the idea….

 

She is also loving having me around to hold her a LOT.  Apparently, she has been taking notes on my behavior for months.  She must have noticed how I always run to her at night with any little disgruntled sound she makes to put her bink in her mouth and wind up her bear mobile. She has paid attention to how I’m the love-to-cuddle her one who doesn’t force her to hold her own bottle (yes! Guilty!) and so now she has decided that having mom home is an excuse to get her way 24/7.

 

She’s a bright girl and knows what the word “no” means.  As testament to this fact, when we were at the optometrist earlier this week (oh, yeah, we went there too! Lol) she was wearing her glasses for the exam and she went to take them off her face to nom on them and was told “no” and had her hand moved.  The lip came out and trembled a little.  She reached her hand up slowly this time and again it was “no” and her hand was moved.  The eyes teared up and the already-stuck-out lip turned down and trembled even more as she wailed like her heart was crushed.  But…she didn’t try to pull her glasses off again.  She’s such a precious sweet heart!  Lord I love her!!

 

She has also started mimicking simple sounds and words with greater frequency.  Like “up”.  She amazes me with how clever she is.  If you ask her to find her belly, she will grab her chub roll and if you ask her where her belly button is, she will poke one little finger in her belly button and then grin at you like, “Here is is!  Found it!”  I melt at the sight of her smile.  I think she may be right about me- “pushover” is by nature what I am with her….but I am working on making sure I only melt when it won’t turn her into a crazy wild baby with no home training.

 

As for the ophthalmologist, she will still wear her glasses and be patched. I have ordered her some new lenses and she’ll be sporting her little pink frames again soon. In six months we go back to see if we can discontinue them at that time.  They are now only to prevent eye strain in the eye that turned in so that it can continue to strengthen. Her vision is normal.  So, once the right eye is as strong as the left, she won’t need them anymore.

 

Well, I am writing this during naptime (and its gradually drawing to a close) so I better go for now. I will post another update next week cause we have lots more appointments!  We have our yearly urodynamics study which will have us a Nemours all day!  Then our weekly PT and her one year shots and checkup. 

 

Plus, I found out that as an alumni, I can still use UNF’s library to print out some scholarly journals I plan to use as reference materials for the book.   This staying home business is keeping me hopping and I LOVE it! 

Hello, Kitty!

We had Evangeline's first birthday party over labor day weekend.  Her paternal grandparents traveled up from central Florida and my parents were there as well.  Her two godmothers also attended and she had a FABULOUS time! 

I had a darn good day myself! 

Spending Time

Time is a resource. Because it surrounds us, we often don’t see it as a scarce resource…but it is.  Most of us don’t think about the fact that our days are literally numbered or that life, by definition, is a terminal condition.  And that unawareness is healthy. If we walked around thinking of “the end” all the time we would be a woebegone species, incapable of enjoying all the little beginnings around us every day.

 

Still, the idea that time is valuable is a good awareness to have every once in a while. I was sitting in my cube daydreaming about Evangeline the other day, wondering where this first crazy year went.  It hit me like a gut punch when I realized in that moment that there were a thousand moments with her that weren’t coming back to me. No matter how I tried to cram in memories on the weekends, spending 8-12 hours in my cube and 2 hours on the road 5 days a week was a lot of time I was missing. It made me sad but what could I do? Like the song says “I got bills to pay, I got mouths to feed. Aint’ nothin’ in this world for free.”

 

As most of you know, my wonderful husband is now teaching Geometry and Algebra II at a Northside Highschool in Jacksonville.  We were enjoying the idea of becoming *gulp* middle class again.  Two nice incomes means no more standing in line at the grocery store hoping the card goes through. (although….I will kinda miss that gameshow feeling as you smile and cross your fingers while mentally chanting “Big Money!  Come on! Big Money!”  Some of you know what I’m talking about) lol

 

Anyway, as we were getting Evangeline set up at her new PT we became aware that she can still receive her CMS healthcare on his salary. We thought his higher salary would disqualify her but it turns out he’s right under the cap- but add my salary in and it’s too much.  Which got me thinking.  Could we put up with another year of living poor so I can have a year of time with my daughter?  It wasn’t an easy choice, but after talking, prayer and waiting for a peace…. we decided to do it.  This next year, I get to relearn her schedule, watch her grow, work on my book project and just be a mom.  After that its “back to reality” but this year, this precious year, is a gift beyond value to me- worth more than a million bucks.  My husband and my family are giving me the best thing ever.  They are giving me TIME.  Thank you all.  I put my notice in last week. My last day is the 31^st.  Pray for me.  I’m very nervous about mom-ing full time.  Especially because amid the baby activities, I want to make sure I set aside time each week to really throw myself into the “expecting spina bifida” project that has become so close to my heart.    I am excited and determined not to waste a drop of a second of this magical time in my life.

Revisions....

Revision:  the act or process of altering something with the intent of improving it.

As a former English teacher, I know a thing or two about revisions. I used to make my students do them.  I personally revised my master's thesis no less than 10 times.  Revisions aren't done for fun and they aren't done because the first draft was a piece of crap. They are done because all things can be improved with a little thought, time, and effort.  And that's the real issue for most of us, isn't it?  What in our lives is worth the effort of revising? Sure, something may be bothering us, but is it bothering us enough to go through all that effort to totally rehash every detail, find the errors, and make the tweaks? But more on that subject in a moment....

 All this vague talk of revisions is of course inspired by Evangeline's recent shunt revision.  Revising the shunt was a proposition that shook me to the core before her shunt was installed.  How many would she need?  Would they be terrible?  How would I know to take her to see the doctor?  For all the other paranoid....erm...I mean diligent new moms of babies with shunts, I will attempt to answer those questions below- at least in regards to how it played out in my situation.

Evangeline's shunt was installed at four months old. For five blissful months it operated with narry a peep of complaint.  Then, on Friday night we put her to bed- just like always; at 3 am she woke us up crying.  Thinking it was a sour tummy (something she occasionally gets) I went to get her and offer her a back pat and jiggle in case she had a burp stuck somewhere.  No burp came out...just some foam and rancid smelling vomit.  It was not projectile like they say to be concerned about. (Though she has projectile vomited when the shunt was not involved. In those incidences she got some pretty incredible distance..like totally across the room.  It was impressive but just a tummy bug- not a brain issue).  So anyway, after she threw up her sour milk, I offered her a drink of fresh formula, which she seemed happy about. She drank a bit and fell asleep. That morning, she just couldn't get awake.  This was also not uber scary as sometimes when she's going through a growth spurt, she wakes up in the morning, eats and then wants to go back to bed.  But when it was after 10am and she was still wanting to nap, I decided further investigation was in order.  I took her and placed her on her play mat.  She had no interest in toys.  Neither would she lift her eyes upwards to track them. She didn't want to eat- but more telling than anything, she didn't smile or laugh.  We knew there was an issue.  There was no guessing involved.  No need to worry that "maybe it was nothing".  Shunt = obvious.  We took her to the ER and in a few hours time, after doing an MRI, they informed us that emergency surgery would be needed.  It broke my heart to see her uncomfortable. I was nervous about the surgery but oh so very glad that it would bring her back to me...smiles and all.

Less than 24 hours after, she was coming off the morphine and ready to play.  As you can see in this video, she was a little baffled with life.  The entire scenario to her was probably like an infant version of "the hangover".  She woke up still a little buzzed, in a strange place with a sore throat (from the intubation during anastethia), a slight headache, and some random banage on the side of her noggin.  Clearly she was like "What the Heck, Ya'll?" But all her people were there, so she figured it wasn't all bad.  (BTW, I had no idea I'd be on film... I thought I was going to be an off camera voice but oh, well lol)

Our hospital stay wasn't a fun time, but it wasn't terrible. We had our great nursing staff, our wonderful neuro team, and family and friends by our side.  Baby girl wasn't in over-much discomfort and I cannot explain how wonderful it was to see the "Evangeline" spark back in her eyes and the majority of her discomfort gone.  Hopefuly we won't need any more revisions for a long while - or ever.  I'm good with one and done!!

Now, back to what I was saying about revisions in our lives that have nothing at all to do with brain implants.....  I have to admit to a little unforgiveness in my life lately.  There is a situation that went down in a way I don't care for...and a couple of individuals who lied to me. And they and their lie cost me and my family a lot.  It hurts and I'm mad.  It was maybe a week ago... that even though its been about a year...I realized that I haven't yet forgiven these people.  At first I was all "well that's OK, cause these are the sort of people who don't really deserve forgiveness anyway".  After thinking about that statement, I realized that is sort of the point.  People that deserve forgivenss don't generally need it.  And the unforgiveness in my heart has been gnawing at my belly, making me feel angry all the time. And that anger pops out of me like a rabbid rabit out of a burrow- when I least expect it.  I recognze this situation as one that needs revision.  Alas, I cannot quite forgive these individuals YET.... but I am praying, asking God to help me, and letting go of the little pieces of anger that I can. I am on my way to revising this area of my life- one little error at a time.  Find it, fix it, make it better.  In that sense, life is one big revision.  A constant re-write of our heart, soul, thoughts and emotions to improve the overall substance of our existance. So whether its brainsurgery or a change of heart, revisions are never fun.  But they are necessary.

Summer Kick-off

What a busy day we had today.  Baby girl had her first taste of grits for breakfast. Then we went grocery shopping for our big cookout on Monday.  Then we came home and played in our new kiddie pool. Well, Evangeline played. The rest of us just enjoyed her fun. At first she was too engrossed in splashing to talk to me.

Then she decided she wanted to tell me all about it!


It was a good day.  Of course no summer day would be complete without a little watermelon!

Tonight, mommy and daddy will go on a much anticipated date and baby girl will get to hang out with grammy and grampa! (And be spoiled) There are many more fun activities in store for us this weekend, but we are all REALLY looking forward to this Friday....Dreamnight at the Jacksonville Zoo. Lots of families from the local SBA will be there and Evangeline will get her first look at a lion and a giraffe and who knows what else!  More pics to come from that special evening.  :)

Evangeline 8 month Update

I have been remiss in posting how baby girl is doing.  So, I will attempt to do a brief update of her skills as an 8month old as well as a doctor-visit update.  To begin with, she doesn't need any speech therapy. She is babbling away with all sorts of sounds. Her communication skills are excellent and she loves playing "peek-a-boo" and other silly games we make up.  She finds it hysterical when you mimic the strange sounds she makes.

She is learning to feed herself. She can hold her own bottle while laying down/reclining. She hasn't quiet gotten the hang of this trick while sitting up, though she is working on it.  She still has some tone/strength issues and holding her bottle up high is a bit difficult and she drops it.  This will come to her as her arm strength continues to increase during her tummy time. She is also learning to pick up small soft foods from her tray and bring them to her mouth. Watermelon is her favorite! A lot of the fruits and veggies we give her end up on the ground or her lap, but she is learning how to put them in her mouth and chomp them with her little gums.  She still hasn't gotten her first tooth yet, but she is certainly teething! 

Her arm strength is improving, and she can now roll over when she has motivation to do so, though it is a challenge for her. Her physical therapist has a goal to get her crawling by 10 months so that is exciting.  I love to see her develop as new ideas occur to her. It will be magical to watch the whole idea of "forward motion" spark behind her eyes as she lurches forward for the first time!

Her most recent urology apt was great. Her kidneys still look perfect and she won't have to go back till she's a year and then they will do some tests on her bladder to see if she is still filling at a normal pressure and also to see if she is still retaining extra urine. This test should tell us a bit  more than the one when she was only three months old did, and I am excited and hopeful about the results.

Her Physical Therapist is talking about getting her a stander to help her learn to bear weight in her legs.  She lacks confidence in that area and a stander will help her get stronger.  It is still a few months before he wants to get it for her to use, but we have to plan early as it can take a while to order with insurance holding the process up a bit.

She is still the happiest baby on the planet and I am still lucky and blessed and fortunate to be her mom. When she smiles at me in the morning, my heart melts and I can't wait to get back home to my family at the end of the day just so I can see that welcoming grin she flashes at me when I walk in the door.

Big Project

Well, my new project is in full swing!  Feel free to read all about the details here.  This is where you can find out why I'm so passionate about this new book for preganat women, where we are so far and how you can participate! 

I promise to get on here and do an Evangeline update soon. Its way past due.  Just wait till you hear all she's doing now! It will nock yer socks off!

Tiny Feet of Power

My daughter has tiny feet.  She probably always will.  After having spoken with many mommys and daddys whose little ones have SB, I have come to realize that little feet are common. Perhaps it is because weight bearing doesn't start till later. Maybe its because some signal traveling along her spine that should tell her feet to "grow" got misdirected or run off the road. Whatever the reason, her feet are small, pudgy and I adore them.  I would kiss her piggies regardless of how they looked. They belong to a princess!

Of course, I love her and I want the best for her and as long as it is up to me, I will make her world befitting such a lovely, graceful, delicate creature.  But the time will come when it will not be up to me.  I want to prepare her for that day.  To that end, I have been speaking a new verse over her.  Its found in Ephesians 6:13-14.  It says, "..Having done all to stand, stand therefore!"

Its a verse in a chapter about "the armor of God" where Paul, the author, compares faith to armor.  I will readily admit to being a history nut.  I enjoy learning about how different cultures at different times solved similar social problems- including issues of warfare.

Shoes, in Roman times, were especially important. The sandals of soldiers were studded with little metal bits (kind of like early cleats) which allowed them to literally "dig their heels in" and not be knocked off balance. Those same shoes could also be used offensively as weapons when no other weapons were available.  The feet of a soldier are his most important commodity. 

I look at Evangeline's little feet and when I tell her, "Having done all to stand, stand therefore!" I don't mean "stand up, baby girl and bear weight!"  I mean, "Dig in your proverbial heals!  Don't let this world knock you off balance.  Fear Not!  Hold the line! Don't retreat!" 

She is a person of great value, talents, worth.  At some point though, some unworthy person will try and convince her otherwise.  This person or people will make her feel sad, and will make her, for however brief a moment, wonder what she is worth. This will not happen because she has spina bifida.  Oh, goodness, that has nothing to do with it.  This sort of thing happens to everybody at some point. And when that day comes for her, I want her to be equipped with truth.  I want her to dig her heels in and call that person "LIAR!"

I want to raise a daughter who, though her feet be tiny, her spirit stands mighty.   I want her ready to take on all comers. And so I speak these words over her. Each. and Every. Day.  I tell her that God made her feet mighty, her mind beautiful, her soul triumphant. I tell her that she is equipped to fight any battle she encounters. And someday I will rejoice with her when she tells me that she encountered cruelty but she stood fast, and saw her enemy retreat.

^"13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.
¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people."

At little fun...

....can go a long way! It was wonderful to share the delight of her first trip to the beach.  Never have I heard her "say" so much in response to her surroundings.  She would just periodically stop, look at us, and babble away or giggle randomly.  We will be going back next weekend if the weather is nice.  And I can't wait for the warm tidepools we'll play in later this summer. 

Ordinary

I am pleased to report I have found a job. Its my first one ever in the corporate sector and also the first one I've had in my adult life where I actually work with adults vs. children/teens.  Its an adjustment but I am excited to be able to provide an income.  Likewise, my husband is proud to be daddy-in-charge, taking care of all Evangeline's appointments, therapies and otherwise managing the household.

As my spouse and I switch into our new routines and new roles, there is an adjustment process.  For so long we've been "surviving" and the skills we used to keep putting one foot in front of the other during the very difficult times of diagnosis, NICU, job loss, housing loss, financial stress, shunt surgery and more were great to have....but those skills are not so applicable now that we are trying to really live instead of just survive.

In a rather profound conversation last week, Bj and I discussed how so often in US history, a soldier in some awful far-flung  place of combat, living in the mud and the cold...fearing for his life as well as the survival of the man fighting beside him, wishes for nothing more than to return to his home, his life, his "normal"...and when he finally makes it back limping, tired and relieved, he finds much to his dismay that he no longer knows how to live the way he lived before. He was changed by the trenches. The heightened awareness that allowed him to survive the enemy, the mire and the muck didn't help him at home... yet  he finds himself unable to shut that sense of impending danger off. He feels alone in a crowd.  He has forgotten how to live in peace.  It is a great American tragedy that this still happens to our soldiers today.

Likewise, even though Bj and I weren't literally in war, in the beginning we did fear desperately for our child's survival. We "knew" that she would be OK, but that didn't stop me from feeling compelled to get up in the dead of night just so that I could place my hand on her sleeping form and feel her belly rise and fall with breath. I didn't want to loose her or my relationship with my spouse in a melee of hospital visits, depression and fear.  Bj and I will forever be marked by the life we lived this past year but we made it through. Now our next challenge comes in adaption, in making conscious though gradual changes to how we think, and  being in regular communication with one another about what we are going through now and where we want to be in the coming years.  Because that is one thing you can never really see on the battlefield- The future is only a wish or a dream.  For so long, we survived but now we have a future.  One we know is out there even if its still not crystal clear.  During lent we are both fasting and seeking direction for ourselves and our family.  Hopefully, by Easter we will emerge with a clarity that helps us adjust to a life that maybe has a few surprises but also has some consistency, some predictability, some stability. 

I am sure that all moms and dads whose children have had prolonged hospital stays and complicated medical issues feel changed by the experience.  Each of us carry our own scars- each the story of a victory, a survival.  Finding "normal" doesn't come without its challenges but I know in my heart it can happen.  What gives me the courage to try and find it is my daughter's smile. All her hospitalizations have been my stress, my battle- not hers! She isn't bothered, afraid, or discouraged.  She loves life, sees the wonder of every new face, item, ray of sunlight.  For her BJ and I will lay our hyper-alertness down. We will do it day by day, one choice at a time and in doing this we'll wake up one day and find ourselves- all of us- in a beautiful state of ordinary.

Your Happiness Gland

No, its not there. Pervert.  lol

The "happiness gland" I'm referring to still hasn't been located by medical science. Nobody can pinpoint that place in the brain- the location that decides to release the neurotransmitters that cause the physiological response that your prefrontal cortex, then decides is happy. Whatever medical science knows or doesn't know about emotions, it can say with absolute certainty that the process happening at a molecular level to produce joy is NOT connected in any way to a person's legs or feet. Yup. You heard me right. You don't need to be able to walk to be happy. Just ask anybody who is wheelchair bound. He or she will probably tell you (esp. if they have been rollin from the time that most learn to walk) that feeling your feet is over-rated.

Of all the things I was worried about when we got the diagnoses, the possibility of Evangeline not walking was what stressed me the least. The hydrocephalus was my biggest fear and we've faced that one and come out with the dreaded shunt no worse for the wear. *insert sigh of relief here*  When she was born wiggling her toes against the odds and the warnings, I was overjoyed of course but her toes weren't what made her so special to me. It was all of her. All she was going to be and do and see and love and laugh about.

Her orthopedic doctor has told us good things early on about her ability to walk unaided.  So have many other professionals.  Today, however, at her  P/T eval she was examined in depth.  The p/t said for the first time today that she may need to use a walker and other orthotics when the time comes to walk. She has some muscle tone issues in her arms and torso as well as her legs. This is why she isn't weight bearing and can't roll over. The extent of her current situation was a surprise, but it didn't upset me.  All afternoon I have wondered why images of a tiny, shiny pink walker didn't disturb me the way they probably should. Then, after returning from getting groceries, I sat down all tired out and asked her how her time with Grammy had been. She laughed at me. I asked her if she'd really had fun. She laughed some more. I asked if she was putting me on.  She giggled riotously.  And I laughed too.  Nope.  Her happiness gland is definitely not connected to her feet or legs or any other part of her chubby little body. Its a good life.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 131:14

Spinal Defect Clinic/Neuro Results

Well, we Kuglers have had a busy week. The highlight however would have to be our neuro visit on Tuesday.  After seeing that the swelling at her shunt site wasn't going down, Dr Aldana had her shunt dialed down from 2.0 to 1.0 and OMG what a difference! Within an hour that horrible lump on the side of her head was gone. Now, I can actually see the outline of the shunt instead of a huge pouch of fluid.  I have a picture of the hand-held machine they used to re-program the shunt and should get around to posting it here for the curious. Medical machinery is such a wonder. Anyway, it was a super easy process and once the setting was changed the results were immediate.  There was no doubt that Maurice does his job to specifications!  (Maurice is the name for our shunt, for those who don't know.  I named it after Maurice Jones Drew running back for the Jacksonville Jaguars who lead the league in rushing yards this year.  I wanted to name the shunt something positive. Something that would indicate it would run and not need revisions.  And so Maurice the shunt was christened! Go, Maurice! GO!)  In celebration we found a Mo-Jo jersey at Once Upon a Child and I can dress up her to cheer on her shunt any time I feel like it now.  :)

In other news we had our first spinal defects clinic Friday and will be making a few changes to Evangeline's daily routine. To start with, I just have to mention that the place the clinic is held is super cute! Its held at the rehab facility connected with Wolfson's Childrens.  They have all these precious little themed rooms. The entire place is set up like a mini-city with rooms that look like various play areas.  Our room was themed "Grandma's house" and was set up with a mini kitchen with dishes and plastic food and tiny table and chairs etc. They even had a tiny chair Evangeline's size with a tray and we made use of it while we waited and played together with some toys I brought her. 

Anyway, our first change is no more prune juice.  We spoke to the lady who was in charge of nutrition and poop.  We discussed my two concerns which were Evangeline's continual weight gain (now 19 lbs!) and the prune juice which has NOT been doing all it was doing before. We knew this day would arrive and now it has. By eliminating her juice baa, we will be removing empty calories from her diet. We will be replacing the juice with 1/2 spoon of Milk of Magnesia to keep things soft.  This may or may not be enough to move things along, but we have the liquid glycerin suppositories to help while we get the dosage right. I just don't want her to go back to the point where she strains to poo and throws up her food from all the straining. So while the transition happens, I will be pretty poop-focused. 

The Physical Therapy/Physical medicine eval went well.  They were focused on her gross motor and were pleased by her dorsiflexion in her feet, stating that walking will not be a problem but with poor plantar flexion she might not be much of a runner. I'm down with that.  They were pleased that her PT eval with early steps was in the works as they feel she could use the assistance.

The Developmental pediatrician came in with a whole bag of interesting-ness.  Anybody that walks into a room with a doctor-bag of toys is alright in my book.  He assessed Evangeline and noted some delays.  Socially she excels, speech she is maybe half a month behind in the sounds she's making but in problem solving she scored at 3.5 months. He said it was at the lower end of normal but only time would tell. He said that we shouldn't focus on PT, we should focus on the cognitive stuff.  Don't put her around the TV because the TV will get her attention but won't engage her back. (well neither do the lights and ceiling fans she tries to talk with, but I digress)  He says just to do as much engagement as we can with her.  I think we've been doing pretty well with this already but we will try and up our game to the next level. We went to target to buy a few more toys. Maybe she doesn't need them, but we felt we did. We will be focusing on trying to get her to generalize the idea she can grab things.  I noticed that right before the shunt surgery she was going backwards in her "batting". She was proficient at slapping at toys that interested her but when her vents were so enlarged she did this less and less. I know her brain is playing catch up right  now. I'm really not that worried about anything.  My child is perfect and under a high-powered microscope like clinic even perfect can look flawed. I know she will catch up when it is her time to do so.  But we have extra toys and a plan. You know, for our own entertainment!

The only other new thing to report is her glasses. We ordered them Thursday and they should be in in about 10 days.  We chose the safe and durable miraflex frames.  They look clunky, but frame designers aren't worried about fashion for babies. They worry about things like safety and durability.  So they create solid plastic frames like these....

We are hoping the soft pink color will entice strangers to stop using the pronoun "he". lol

Softball anyone?

Pretty soon my little cupcake is gonna look like Patches the Pirate meets 'Arry Potter. At the opthamologist today she got some sample patches and a script for eye glasses that we will be getting filled this week!

I had no idea that catching things early in the eye's development could be SO important, but if our doctor's enthusiasm is anything to go by its SUPER important.  Apparently much of human depth perception is formed in the first year of life, and by the time she (or any opthamologist) sees most babies, the damage is already done. She was practically glowing with excitement after the exam when she said, "I know I am treating this aggressively, but you have to understand, you brought her in early and this is a baby I can actually HELP!"

She was very pleased that the optic nerve showed no swelling and wasn't pale like it had suffered any injury at all from Evangeline's hydrocephalus.  She is still concerned that there might be a "brain/muscle" problem where the brain is sending the wrong signal or the muscle is hearing that signal wrongly and its this miscommunication that keeps the eye turned in toward the nose. The only treatment for this muscle problem is a surgery.  The surgery won't leave a scar and will correct the problem if it is called for.  We won't know if its called for though, until we see if this aggressive patches-and-glasses therapy works. A decision will be made sometime between 6 and 12 months regarding  if surgery is warranted.

For right now, she will be sporting a patch for one to two hours a day and will be styling in some lovely frames (I hope to find some real cuties!) when she isn't sleeping.  The glasses are for farsightedness.  Most babies are farsighted so that by itself isn't unusual, but hers, while still in a range of normal, is enough that it might be the cause of her left eye turning in when it tries to focus on things up close.  So by using the patches and the glasses we are sure to help the problem if it can be helped non surgically! 

This is great news because, as the doctor explained, this means she will be able to keep her depth perception and everything that stems from it like hand-eye coordination.  Which of course will come in handy one day if she wants to try her hands or feet at sports in the future.

For now, anytime she rubs her eye patch pathetically or turns her little head trying to escape it, I must remember that what I am doing is furthering her possible future college scholarship as a softball pitcher.  After all, she will know as good as anybody that life is all about how you handle the curve balls. 

Upcoming Spinal Defects Clinic

This is just an update for those of you who may not know what a spinal defect clinic is.  It is often called a "spina bifida" clinic, but no matter what you call it, its an all day doctor-palooza.  In Florida there are three such clinics: one in Jacksonville, one in Orlando and one in Tampa.  So families from North Florida and the panhandle attend the Jacksonville clinic when it runs. It happens several times a year. In the beginning a child may be seen twice a year. After he/she gets older, they may go only once a year. Our first clinic will be Feb 10th. We will spend the day before at Nemours getting kidney ultrasounds to check for reflux  (to determine if we need to start cathing her) and we will also get a back x-ray to check for signs of early scoliosis.  They will want those tests when they examine her.

Then, the next day is clinic!

We will arrive at clinic at 12:30 and be assigned a room. We'll have our snacks and some books or magazines with us, along with some toys to entertain Evangeline since we'll be there all afternoon. Each of the doctors (some of whom we have never met before) will rotate through and visit us in our little room.  We will be seeing orthopedics, urology, GI, developmental pediatrics, neurology, neurosurgery, social workers and MORE! At the end of the day, all the doctors, nurses and other practicioners meet and compare notes on each patient. From that meeting a report is generated that looks at the whole child. We will get a copy of that report a couple of weeks after clinic. 

Naturally this experience is convenient in that we can see everybody at once and advantageous in that the doctors actually get to talk to one another about Evangeline; however, it is still kind of nerve wracking because you never know what may result out of such a clinic. They may decide to add in additional treatments, change an opinion about an existing situation etc. My biggest concern is urology. I am not sure how they will want to handle her frequent bladder infections. They may do nothing because she doesn't run a fever with them (they are asymptomatic). Or they may want place her on preventative bactrum or begin catheterizing her once or twice a day. None of these options are bad, they are just nerve wracking as I am stressed out trying to figure out what is best for her. It will be nice when she is old enough to voice opinions on such matters for herself.

In related news, I am still trying to get the insurance waivers sorted out to get in to see the opthamologist... and I am also having problems getting her PT eval scheduled. Although, I do hope to get those both scheduled soon. Her right leg is so strong that she gets really close to pushing herself over during tummy time, but her left legs doesn't do much but stay locked into place. I don't want to neglect anything I should be doing to encourage her left leg to do what it should be doing!  So I wish I could just contact the PT myself, but on her insurance Early Steps seems to be the only game in town for those types of services. I must remind myself to be patient.  :)  So, that is our update.  Pray with us for a positive clinic experience.  I will report back here when we get the results.  :)


Meanwhile, here are some verses from one of my favorite OT books... Isaiah.  Its something I am meditating on as I contemplate where I am heading and what God wants for my family and every family out there. Sometimes we can't imagine the destination cause the journey is kinda screwy, but goodness is out there...and we are heading someplace good...to that Place of God's Desire... we just have to keep on walking, running, cycling, swimming, or rolling towards that destination.

Isaiah:55:8-13
“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
⁹ “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
¹⁰ As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
¹¹ so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
¹² You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
¹³ Instead of the thornbush will grow the juniper,
and instead of briers the myrtle will grow.
This will be for the LORD’s renown,
for an everlasting sign,
that will endure forever.”

Special Forces

I was sitting there moping tonight, pondering the steps I'll need to take to get Evangeline a referral to see an opthamologist over at Nemours. Her right eye wants to turn in toward her nose. It seems to me like a mild case of strabismus, commonly known as "lazy eye".  I looked it up and according to the hydrocephalus association, it can occur when pressure is/was placed on the optic nerve, specifically "the sixth nerve" which pulls the eye away from the nose. The problem can usually be corrected by an eye patch, but in some instances surgery is required.  You may be asking yourself why I am diagnosing my child.  The answer is simple. Because I can. I only need a licenced physician to assist me with determining severity and treatment options. You see, something else has occurred to me as I was sitting there, dipping my toes in the waters of depression, deciding if I wanted to jump in and swim around for a while. It occurred to me that like a lot of you out there... I am one crazy, butt-kicking momma.

A few years ago, I felt like I entered basic life/combat training. I broke my ankle, shattered it really, and had 9 pins, a plate and some cadaver bone installed to patch it back together again. I was four months non-weight bearing and got a pretty solid taste of how freaking annoying it can be to go somewhere that doesn't have wheelchair access at the curb. Because lets face it, hopping around on one leg is for kids and teenagers. When you haven't got much skill with them, crutches freaking hurt your arms! Then just a little bit after that my husband hurt his back; a piece of disk at his L4-L5 broke off and pressed against his spine. He lost feeling in part of his left leg and foot and was in a great deal of pain till a good surgeon went in and removed the floating piece. His recovery was long and grueling. During that time, we lost a lot of "stuff", our faith was stretched, our marriage was tested. Somehow, we made it through that boot camp. I thought the worst of it was over. I thought there was time to breathe, but nope. Turns out that somebody thought I had what it takes to go further...and that somebody signed me (and him) up for special forces training.

You know the kind of training I mean. The break-a-chopstick-in-half-and-immediately-recognize-three-different-ways-to-kill-somebody-with-each-of-the-pieces kind of training. If life had a special forces team...a team whose purpose was to survive any obstacle...then special needs parents would be just such a team. We have to learn to recognize and quickly respond to symptoms that could potentially be life-threatening. We have to attend to minute details like how many times our child poops in a day- because those details matter- and there is nobody else who can attend to them. We go through decisions, trials and stress that a lot of people don't even want to talk about. We cry tears, feel fear, press through.  Nobody else can understand why we spend sleepless nights, why we eneter their bedrooms just to see them breathing, why our hearts shudder or break or soar depending on how the appointment went... except for our fellow brothers and sisters in arms. Most parents prefer to believe that we don't even exist. They don't want to ever imagine that they could BE us. We do what we do for future generations with no fanfare. If we had a motto it would just like the marine corps.... Improvise! Adapt! Overcome!

Yes, it can get wild and woolly out in the field, it can get dirty in the trenches, it can get scary when the diagnoses start flying over our heads. But our pay is in smiles. The medals pinned on our uniforms are pictures of our children doing those things we were told they would never do. The reward for our vigilance is a healthy child, because we caught things early. Everything we do is worth it. Every time we pull ourselves back up out of the dirt and into the fight, we score a victory over the condition that tries to keep us and our children down. Every time we walk away from the waters of depression- that river of tears imbued wth a siren's song- we win. Every time we find the simple joy in just being called "Mommy"or "Daddy" our enemy cringes in terror.

So, yes, life can seem disheartening on nights like tonight when one more thing tries to throw itself on my over-flowing plate. But then I have to remember who I am. I am MOM. Nay, I am special forces, special-needs MOM! I can handle this and so much more. I have passed that special training. I am care-taker to the most marvelous little creature I could ever dream up! So..... I Improvise (Lazy eye? No problem, we put the patch on her eye and tell people she's the mascot of a local pirate crew and teach her to yell YAR!). I adapt (problem? What problem?) I overcome (I give my baby snuggles and kisses).  I live and I laugh and I win! That's who I am. Do not make me get the chopsticks. Hoo-Rah!

Passing the time...

I spend most mornings now looking for jobs. I was spending all day, but found that by targeting sites one day each week, I have more to look through per site, so I rotate through the "major" sites, periodically checking company sites for opportunities not posted elsewhere. Its a pretty good system and it works.  It also leaves me with free time in the evenings, and I'm working on something that has been on my heart for a while.

I belong to several spina bifida forums. They were real life savers to me during my pregnancy when everything was unknown and frightening. Before I found the forums though, I remember looking for books on the subject and finding the selection...lacking. The most recent book written for parents of children with spina bifida was first published in 1999...before completion of the MOMS study. A lot has transpired since then. Also, there wasn't anything specifically addressing the questions of a pregnant woman.  Although there are a few exceptions, most babies are diagnosed prenatally...a time when you know something is wrong but the uncertainty of the diagnosis looms bigger than your belly. Even while I was still prego, I wished there was some sort of walk-through guide.

On the forums, I notice that most of the new moms ask the same kinds of questions, have the same fears, guilt, wishes, confusions and struggles. Many don't understand how to navigate the medical labyrinth or why there isn't a "spina bifida" doctor. Many are overwhelmed by the number of physicians they see, and they often end up seeking answers from their OBGYN, a physician who specializes in female reproduction, simply because they don't know who else to ask.

There are tons of myths out there. Women have been told that spina bifida is fatal, that it can make a child mute, that it leaves the majority of babies "retarded". There are specifically a lot of misconceptions about hydrocephalus and ventromegaly. Women wonder if their child will need special equipment when they come home from the hospital, when they will be allowed to see/hold their baby, and how soon all their questions will get answered. 
They feel emotions unique to their situation. They feel robbed of what should be a happy time. They feel grief, imagining/wondering if their child is suffering now or will suffer later.  They are angry, frustrated, frighted, changed forever.  And most feel alone through it all.

I have been working very hard to develop an outline for a book that addresses these questions and more. I am finding use for my years in the education field and have designed the book with adult learning principles in mind, ordering the book to present a lot of information without the information seeming like an overwhelming flood of clinical mumbo jumbo. I have spoken with a friend of mine, a board certified neurologist, who has agreed to be interviewed for one of the opening chapters discussing the technicalities of what spina bifida is.  If the book proposal is accepted and the publisher is interested, then I will begin getting interviews from parents and adults for other chapters. There is nothing like "hearing it from somebody who has been there".

I am also doing research in the field for new scholarly studies done since 1999...on subjects ranging from Folic acid, to the MTRFR gene, the MOMS study, advances in the treatment of hydrocephalus, and even how having a special needs child can impact your marriage.  I have no idea ifthe publisher will feel my idea will be marketable, perhaps it is too much of a "niche"...but I am pretty proud of myself for the work I have put in and I hope that I get the "go ahead" to complete the project

The Show Goes On....

I've decided that our theme song in 2012  will be "The show goes on" by Lupe Fiasco.  Most of the lyrics don't apply, but the last verse and the chorus pretty much sum up everything in my life at the moment and the attitude I have about moving forward...

So no matter what you been through
No matter what you into
No matter what you see when you look outside your window
Brown grass or green grass
Picket fence or barbed wire
Never ever put them down
You just lift your arms higher
Raise em till’ your arms tired
Let em’ know you’re there
That you struggling and survivin’ that you gonna persevere
Yeah, ain’t no body leavin, no body goin’ home
Even if they turn the lights out the show is goin’ on!Alright, already the show goes on
Alright, till the morning we dream so long
Anybody ever wonder, when they would see the sun up
Just remember when you come up
The show goes on!
Alright, already the show goes on

They may very well turn the lights out.  That happens when you haven't seen a pay check in two months....but the show will go on. Life will go on. We will keep putting one foot in front of the other even when we get tired and want to give up.  Why? Not because we want to, but because the alternative is unacceptable.

There are days when the blessings are hard to see. But they are there.  Sure, I may be tired of mana, but thank God its there!  Several people have helped us in the past few months and that (along with a small and now-depleated savings account) has allowed us to stay afloat and maintain the things necessary: car, phone etc. to continue looking for work.  To each one of them, I send sincere thanks. At the moment, unemployment has looked over the additional info we sent them to prove we had wages (since our company didn't have to report them quarterly) and then has decided to deny us both because we "worked at a non profit organization with fewer than 4 employees".  In Florida a company meeting that criteria isn't required to pay in and so unemployment says we can't cash in now that we are laid off. Strange...I paid taxes out of those pay checks that I now "can't count" as wages! I am appealing but I don't know if it will yield any fruit. Lets just say I'm not holding my breath! ;)

Evangeline is doing well since her shunt surgery.  Though there have been a few issues with tummy troubles, they are minor and the surgery its self she is recovering from in her typical amazing fashion. It was a blessing for both of us to be able to be there with her in the hospital, which wouldn't have happened if we'd been working- so there is that too.... Not to mention the fact that medicaid, lovely medicaid, has ensured that she gets the best care even though we would otherwise have no way to pay.

I have had a couple of call backs for jobs and so things are stirring. Hopefully I will secure something soon. Until then .... "Because the Sovereign LORD helps me, I will not be disgraced. Therefore have I set my face like flint, and I know I will not be put to shame." Isaiah 50:7