Where We Are Now...

Dear Family and Friends,

There is hardly a day that I’m at work, that one of my coworkers doesn’t ask about how Everett is doing.  In fact, just last week, a “day shifter” from another unit stopped me in a staff meeting to ask after him.  I am always very touched by this...that after these three years, people still remember and think about him.  I also ran into an old friend just after the holidays who was kind enough to tell me how much she enjoys reading updates on Everett.  She said they not only help her keep tabs on our entire family, but that she also loves to hear about how he is progressing.  This also touched my heart and inspired me to write this new update.  I never know if I am boring/annoying people with these.  But for me, these updates serve many purposes.  Firstly, they are Everett’s “baby book,” since no other baby book really fits him anyway.  Secondly, they are a place for my thoughts and feelings, a place for reflection and appreciation.  They help me remember how far we’ve come and how much we have to be thankful for.  

Everett is 3 years 3 months.  On his third birthday, he aged out of all his therapy programs and we had to say good-bye to Marla (his Child Development Specialist) and Kate (his physical therapist).  It was difficult to let them go.  They’ve both been with us since Everett came home.  These women have been such a part of our daily routine that it feels like something is out of place.  I’ve always called them my “baby manual,” but joking aside, that’s what they are.  They guided me through every big milestone of the past three years and to be suddenly cut-off from them has been hard.  Of course that isn’t to say that we don’t still talk and text.  I’m afraid they are with us for life, just like Everett’s nurses and doctors.  But I do miss seeing their smiling faces each week.  

Marla, Everett, and Kate

The loss of Marla and Kate has left Everett’s continued therapy needs up to Zac and I to fulfill.  We knew that this was how it was going to be.  Everett was assessed right before his birthday and he was at actual age or above actual age in every category except gross and fine motor skills (where he is at a 24 month level) and speech (where he is at age level but is still lacking proper utilization of language) .  Therefore, he didn’t qualify for continued therapy through Tri-Counties Regional Center (that’s who’s been providing his therapy all this time).  So we started to traverse other government programs looking for assistance.  The first place we tried was California Children’s Services, but it was determined that Everett’s deficiencies were not severe enough to qualify for their program.  So next we pursued therapy through the Lucia Mar School District (which is allowed even though he’s not of school age).  We were accepted into the SNIP (Special Needs Intervention Program) Speech Therapy Program, which gives Everett 45 minutes of group speech therapy twice per week.  The class operates like a preschool of sorts, with almost a 2:1 ratio of children to teachers.  They work on word pronunciation, sentence structure, question and answers, logic, ABCs and 123s.  The kids range in age from 3-5 years old, some with co-existing challenges and some with just speech delays.  We’ve already seen improvements in just the three months he’s been going there.  The big change for me is that this program is NOT parent participatory.  Meaning, I just sit there and watch.  It’s been hard...very hard, seeing as I’ve been involved in all of Everett’s therapy since the beginning.  I have a difficult time watching the teachers interact with him in a way that is different from what we do at home or what Marla and Kate did when they were seeing him.  I often want to speak up for him, to let them know they are doing it “wrong,” but the goal has shifted from integrating Everett into our family to getting him ready for school.  So I am constantly reminding myself that the rules have changed.  I’ve also been having some difficulty in dealing with the teachers directly.  I think Marla and Kate knew how to handle me, knew my heart, and what it needed.  The new teachers don’t know me and I often find myself almost offended by what they have to say.  That probably isn’t fair to them as they are only doing their job, but I need things sugar-coated, I need to hear the good before the bad, otherwise I don’t hear anything.  I also need to feel empowered...I need to be given solutions and action plans to solve Everett’s issues, so that I can feel like I am able to help him.  Otherwise I just feel helpless.  And I can’t stand feeling helpless!  Like I said, it’s been hard.  

The other component of this has been attempting to find a physical therapist to work on Everett’s gross and fine motor development.  We were warned by Kate that this would be difficult.  There isn’t a lot to choose from here on the Central Coast.  Everett’s physical needs weren’t severe enough to qualify him for physical therapy through Lucia Mar, so we’ve been pursuing physical therapy through our private insurance.  It has been slow going for the last three months.  We have an HMO plan so we had to be seen by therapists that our insurance contracted with, none of whom had experience in toddler physical therapy.  It has been really frustrating to go to these appointments, pay the copays, only to have the therapist tell me that they really don’t have the expertise to treat him.  Arg!  So, one day I pulled out the phone book and started calling every physical therapy business listed, asking if they employed a pediatric physical therapist.  Finally, one business gave me a reference to a therapy unit in Santa Maria designed especially for special needs kids.  It is called Kindred Care Therapeutics and all I can say is that this place is literally my dream come true for Everett!  They have a HEATED pool for aquatic gait training and a suspension jumping unit to help with jumping skills.  The owner has ex-27 week micro-preemie twins so she knows exactly where we are coming from.  What a breath of fresh air!!!  Now, the only barrier is that this company is, of course, out of our network.  So we are in the process of trying to get the therapy approved.  I know we are in for a fight.  But I’m used to fighting for the things I think Everett needs.  The owner told me that I may have to be a “Big B” to get the insurance to approve the charges.  I told her that when it comes to my kid and what he needs, I can be the “Biggest B” in the world!  I am just impatient to get him there.  I think it will help immensely with Everett’s running and jumping (two things he is still having difficulty with).  

As I think you can tell by the tone of this update, at times I find myself fatigued by all this therapy, assessments, appointments, and specialist opinions.  I think a part of me, maybe larger than I realize, thought that by now we would be on the “normal” track, that Everett would be caught up and things would be simpler.  After some deep thought, a few tears, and a harsh look at reality, I realize that we are probably always going to be walking the fine line between “normal” and needing extra help.  That’s not to say that we don’t think Everett isn’t an incredibly intelligent and active child.  This is obvious to us!  But I also think that things with Everett are never going to be easy.  I think we are always going to have to be watchful and vigilant about identifying areas where he might need help.  All this is ok, of course.  I’m willing to do any amount of therapy that he needs to help him lead a fulfilling life.  I just wish, if only for him, that he didn’t have to work so hard to achieve things that come so naturally to others.  I am starting to see his frustration now, his understanding that he can’t do some things like other kids do.  And at times it breaks my heart.  BUT, all these challenges are shaping him into this amazing person that he is going to become.  But for him, I sometimes just wish life was easy.  I don’t want it to come off as if I’m not appreciative because I know things could be so, so much harder.  Our troubles, when compared to many, are very insignificant indeed.  But I have my moments of feeling...tired...of hearing what is wrong with my child.  Like any mother, in my eyes, he is uniquely perfect!  

Our Christmas holiday was magical this year as Everett really understood about Santa Claus, christmas trees, presents, carols, and being good.  His excitement brought back all that childhood wonderment that seems to fade with age.  And we were blessed when I unexpectedly got Christmas eve off work! YAY!  We also hosted “Bollinger Family Christmas” for the first time, with 30 Bollingers at our house for the day.  It was a BLAST (until our septic tank backed up...yuck!).  The New Year found us ordering Everett a second pair of glasses which arrived today.  He actually wore them...really wore them with no issues, until about 5 o’clock when I walked into the living room to find them missing an arm.  They lasted all of six hours!  That has to be some kind of record.  So tomorrow, I will take them back and pray that our vision coverage has a warranty on them!

I hope this update finds all of you well and blessed in 2013.  We are always thankful for the many blessing we have in our lives, including each of you.

With Love,

The Bollinger Family

Everett Turns Three...

Now and Then...

A letter to my son on his third birthday...

My Dearest Everett,

Somewhere in this year of your life, you went from toddler to little boy.  My baby is gone, replaced by a little person with opinions, an imagination, and a mind of his own.  Oh how I have enjoyed watching YOU emerge!

When I’m asked to describe you, the first word that comes to mind is “sweet.”  In fact, I often call you “my sweet boy” because that’s exactly what you are.  You are eager to please, eager to be affectionate, eager to make those around you happier with one of your giggles or a trademark Everett smile.  You say “I love you” without prompting and Daddy and I are in a daily competition to see who gets the most kisses from you.  You give the BEST hugs, both arms wrapped around my neck, squeezing tightly as you grunt with excitement.  I love that about you!

This isn’t to say that you aren’t still ALL BOY.  I’m truly amazed that we’ve made it to three years old without a broken bone or stitches.  You are rough and tumble and so, so physical.  You run and jump and fall and roll and climb and fling yourself all over the place.  The only way to get you to stand still is to put on Thomas the Train.  As the episodes play, you act out what you are seeing with your Thomas toys.  It’s pretty cute and I love watching your imagination at work.  This obsession has lasted the entire year and doesn’t appear to be waining anytime soon.  And speaking of electronics...you are a whiz at them, already having mastered my iPhone, the DVD player, and my Kindle.  I often find myself fighting with you so I can check my email or Facebook.  You particularly enjoy watching videos of yourself, calling yourself “baby Everett.”  

You have many friends that you really play with now and you often ask for them by name.  You often ask for family members by name too and have even started calling your Gammy and Grandpa on the phone to “talk” (like I said, you’re a whiz at electronics).  In social situations you are very passive...something we have been trying to change in you.  You tend to allow others to walk all over you.  We’ve been trying to show you how to stand up for yourself and we’ve been encouraging you to make your feelings known.  I’m sure this will backfire on us at some point...probably when you’re a teenager :-)  But for now, we really want you to say “no” every once and a while.  At preschool, your favorite activity is circle time songs, with your particular favorites being “Three Little Monkeys” and the “ABCs.”  Another favorite activity is “nastics,” aka gymnastics, where you are given a safe environment to fling yourself about without the potential of getting hurt.  You love your social time.  

There isn’t a challenge that we’ve asked of you that you haven’t been able to achieve.  When you got your leg braces earlier this year, you didn’t put up so much as a fight.  You accepted them so easily, almost seeming to understand how badly you needed them.  We call them “your special shoes.”  They have made quite the difference, making your legs straighter and helping you attain those last mobility milestones that you have worked so hard to accomplish.  You speak in 3-4 word sentences and I often need to translate for you with people who aren’t around you very much.  You are going to start a speech therapy program next week and I already know that in just a few short months, you will have achieved all the goals your new therapists have set for you.  I know this because that’s how you are...if we ask it of you, then you do it.  You are such a hard worker!  

I must say that this new phase of your life has been really, really fun.  The toddler times were pretty frustrating for you and us, but the closer you got to three the better we all seemed to understand each other.  Watching the world through your eyes has got to be one of the best parts of being your mama.  Your love for life, your desire to understand how things work, your sweet temperament, your energy, your determination...all these qualities and hundreds more are what I love about you.  I have learned more about myself in the three years of being your mama than at any other time in my life.  In the crazy moments of raising you, I have discovered what makes my life good, what makes my life worth living.  It is you.  Thank you for being our sweet boy.  Happy 3rd Birthday!!!

Love,

Mama and Daddy

Changes...(Everett is 2 1/2 years old)

Dear Family and Friends,

With the changes piling up here in our family, I thought it was probably time (or well overdue) to send out an Everett update.  Change is a constant that I am constantly fighting.  I thought that after everything we went through with Everett that I would be more adaptable to change, but alas…I am not.  Some things never change.  These past few months have been stressful and our emotions have been running high.  But we are finally settling in…changes-and-all.    

Change #1:  For those of you who received our Christmas card, you probably noticed that we moved…two weeks before Christmas.  It wasn’t the best timing, but it was totally out of our control.  We did the best we could and even got our Christmas tree up and (slightly) decorated in our new place.  Now we are all moved in, boxes unpacked, pictures hung, routines established, and are making new memories in our new home.  We have gone from a tri-story, two bedroom with a tiny and noisy backyard to a single story, three bedroom with a large yard and land to spare.  It is awesome!!!  Almost immediately we noticed a HUGE change in Everett.  Our tri-story house was very difficult for his mobility and independence, as he couldn’t go anywhere without encountering tile stairs.  Our old house was “baby gate central.”  So it was either play in the living room, play in his bedroom, or play in the backyard (which also had brick stairs).  Shortly after moving, this child went from cooped up to crazy!  He started running, jumping (kinda), and began to play independently when he hadn’t done any of those things before.  It was as if he grew up from toddler to little boy overnight.  He adjusted so easily.  Now we spend 2-3 hours outside daily!  I never knew how much we were missing with having an unusable backyard.  I’m learning about gardening and planting and we hope to have chickens by summer.  Yes…I said chickens!!!

Christmas Morning

Change #2: In the last update, I mentioned that Everett needed glasses.  Well, that whole project was an exercise in his will and my patience!  He absolutely refused to wear his glasses.  What started out as simply removing them only moments after I put them on turned into full force running away from me screaming when I was holding them.  He even hid them around the house when I wasn’t looking.  I tried everything…EVERYTHING…to keep them on his face.  I tried TV, I tried books, I tried Oreos and toys.  I tried them with the strap and without the strap.  I tried wearing my glasses and pointing out other people’s glasses.  Nothing worked.  The idea was that eventually he would realize that he saw better with them on and he would begin to leave them on…HA!  That was not our experience.  So after four months of a back and forth battle over the glasses, I called the doctor and asked that she recheck the prescription.  Come to find out, the reason Everett wasn’t wearing the glasses was that he no longer needed the glasses.  Somewhere in between the exam room and trying to get him to wear them, Everett’s eyes drastically changed and he no longer needs glasses…for now anyway.  His astigmatism greatly improved.  It is still there but isn’t severe enough to warrant glasses in a kid who fervently fights wearing them.  So yay!  I’m relieved.  And I hope with all my heart that is something we never fight through again. 

The glasses...

Change #3: On a regular day here at home while working with Everett’s physical therapist Kate, Everett stood up on his tip toes while barefoot and we noticed some odd curling of his toes.  Basically, when he stood tip toed, his big and second toe stayed on the ground while his third, fourth and fifth toes curled under and were touching the bottom of his foot.  We both said “Huh, that’s new” at the same time.  Everett has become increasingly knock-kneed over the last few months so these two things combined had us thinking that something was going on orthopedically.  At Kate’s suggestion, I made an appointment with our pediatrician and he confirmed that Everett’s feet were definitely hypotonic (meaning they are looser than they should be) while his toes were hypertonic (tighter than they should be).  All caused by loose Achilles’ tendons, basically, Everett’s arches collapse under weight.  The inner malleolus (the bone that sticks out on the inside part of your foot/ankle) touches the ground when he walks.  Not normal!  This collapse is causing his feet to rotate inward, which is causing his knees to rotate inward, which is causing overstretching of his hip joints etc. etc.  Everett has always fallen more than most children.  We believed his balance issues to be due to his vision and thought that the glasses would help…not so much.  When we went to the pediatric orthopedist (from Cottage Hospital) he told us that Everett’s balance issues were due to the feet problem.  Essentially he is only walking on his inner foot because he is rotated inward so badly.  The lack of contact with the ground is what is making him fall.  Secondary to this is also an inability to jump and walk up stairs independently (something his 18 month old friends can already do proficiently).  So, this new diagnosis means that Everett gets braces for his legs.  Insert my own anxiety attack here.  They are specially designed and molded to his feet.  They not only correct, but permanently treat the problem…physically forcing a change in the bone structure of his foot.  I didn’t have the courage to ask how long he’s going to have to wear them yet.  One step at a time (literally). 

The fortunate thing is that this condition is usually diagnosed when children begin playing sports and they experience excruciating pain while jumping and running.  But by then, permanent treatment is too late.  You can only support the arch but its actual shape can’t be changed.  At Everett’s young age, we can actually fix the problem.  His pediatrician was surprised that he was walking, running and attempting to jump.  He says the condition is very painful and toddlers are typically reluctant to play hard on their legs.  But we noticed quite some time ago that Everett’s pain tolerance is frighteningly high.  This kid takes hard hits and doesn’t even cry.  It sort of scares us sometimes as we think there is a real possibility that he will break a bone someday and we won’t know it.  He just doesn’t feel pain, or deals with it very differently, compared to other kids his age.  He’s a tough cookie!

In just one week of wearing the braces, Everett is already balancing on one foot, kicking a ball, walking up and down stairs independently, and is closer to jumping than he’s ever been.  I’m a true believer that these braces are going to make a HUGE difference in his mobility!  The only drawback was having to buy all new shoes for him as the braces don’t fit into his old shoes.  He went from a size 5 to a size 9 wide in order to accommodate them.  They make his feet tired and sore.  He often asks for his “baces” to be removed.  But with the immediate results we are seeing, I’m on board with this for the long haul. 

The braces...

Change #4: Everett moved to a big boy bed (sigh) a few months ago.  He was dangerously close to climbing out of his crib so it was time for the transition.  I’d like to say it has been smooth sailing, but it has been a challenge.  The toddler bed has offered him the ability to get up frequently (I think his record is 23 times in one night) and because we have lever door handles, he can also get out of his room.  All this aside, he loves his new bed.  While hanging onto the side, he jumps and jumps and jumps.  And after a few weeks of waking up painfully early, he finally adjusted back to his usual wakeup time and now plays in his room for about half an hour before he needs attention.  This makes mama very happy! 

We are Dale Jr. fans in this house,
and E knows that Sundays are NASCAR days

Change #5: At the urging of Everett’s other therapist Marla, we joined the Parent Participation Program at the Oceano Community Center about six months ago.  It is kinda like preschool but with moms (or dads) present.  It is structured play, group songs, snack time, play time, parent discussion and overall fun for parents and kids.  We love the program!  Marla thought it would be a good idea to have Everett interacting with children in a group setting to stimulate his language.  It has been quite the transformation!  He is now speaking three word sentences.  For example, “Mama, I love you (oh that’s four actually!),” “I go poo poo,” “Want cheese please,” “Jack made mess,” and a ton of other endearing toddler phrases.  He is singing songs now too, which is pretty neat.  He gives me the first line or two and then I finish singing them for him.

On March 16^th, we celebrated the second anniversary of Everett’s homecoming!  A very special day indeed for our entire family, we spent 30 minutes trying to take the annual picture of Everett’s head being held in Zac’s hand.  Last year’s picture was easily achieved but this year…well, we got one good picture out of the whole shoot!  But I think it is pretty neat to see physically how far Everett has come in his 730 days at home.  In another big moment for our family, just 10 days before Everett’s second “home-iversary,” Zac and I made the final payment on our first CHLA bill.  Talk about timing!  Almost two years to the day, we paid off our first bill.  It feels pretty good J 

We were blessed in getting to celebrate Easter here in our home.  For the first time since we were married, we hosted both our families for the holiday.  I think my mom would laugh a little as I wasn’t a very prepared host (our china still had the price tags on it…so she had to wash all the dishes when she got here, plus help me set the table, and provided all the Easter decorations), but we are SO THANKFUL to have the space to finally have both our families under the same roof.  It was a great celebration! 

At the Great Egg Hunt

So that’s where we are today…new house, new school, new bed, new braces!  I’m sure the changes will keep on coming.  But one thing that never changes is the love we carry for our son, our family, all of you (our precious friends), and our gratefulness for our lives!  Change, while sometimes hard, has a way of bringing blessings that we never dreamed possible J 


Love,

The Bollinger Family

World Prematurity Day...(Everett is 25 months old)

Dear Family and Friends,

Happy World Prematurity Day! I know, a weird thing to celebrate but the March of Dimes has launched a campaign during November (Prematurity Awareness Month) to focus attention on the serious problem of premature birth. And today, they are honoring the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. So I thought I'd add a little personal face to World Prematurity Day and send out an update about our preemie :-) If you're interested in finding out more about the campaign, here is the website.

http://www.marchofdimes.com/mission/prematurity.html

On Everett's second birthday all the adjusting for his size and development stopped (pretty mean if you ask me). For the first time, he was compared against typical two year olds. The rule with preemies, even micro-preemies, is that they are supposed to be caught up by age two. It doesn't matter how sick they were, how long they spent in the hospital...at two all the special considerations end. I know from watching Everett around other two years olds, that in size and some areas of development, he still isn't quite caught up to his peers. And that's ok...he makes progress every day and that is what is really important! But with his well checks and therapy assessments, I always feel a certain amount of anxiety. I'm constantly trying to stop myself from comparing Everett to other kids. I'm always trying to emphasize that he is uniquely perfect. Assessment time tends to derail my "inner mantra" and instead allows the dark thoughts to creep in. Thoughts that wonder if there will ever come a time when Everett stops progressing or if someday, some type of permanent delay will make itself apparent. With the loss of the "corrected age adjustment," I wasn't looking forward to Everett's two year assessments. More like dreading to the honest...but I'm very happy to report that our little man continues to amaze.

Did someone ask about those growth charts??? Well, let me tell you, Everett has a percentile!!! In fact, Everett has TWO percentiles!!! He is measuring in the 25th percentile for height (at 32 inches tall) and the 10th percentile for weight (at 22.5 pounds)...all uncorrected! Woohoo!!! Little man is getting big :-)

In the areas of development, Everett is equally amazing. He was assessed just before his birthday by his Child Development Specialist and his Physical Therapist. In the areas of cognition (thinking), social and emotional development, and receptive language, Everett ranked at his actual age of 24 months!!! He actually ranked even older in social and emotional at 27 months, but I won't bore you by bragging :-) In the areas of fine and gross motor and expressive language, he ranked at about 19 months (not too bad). His lower score in this area is because he still has the walking pattern of a newer walker; meaning he guards a lot with his upper body and arms. And he still falls a fair amount. But he's doing it and only time (and the addition of glasses) will help this. His language continues to improve everyday and it seems that even in the past few weeks he is getting a new word almost daily. This has helped tremendously with his tantrums. He can pretty much communicate what he needs and wants. THANK GOODNESS!! In the areas of feeding, toileting, and dressing/hygiene, he ranked at 19-23 months. We've decided to begin potty training and so far...well, it's not going very well. But I haven't been pushing the issue that hard either. I'm perfectly content to change diapers a little longer if it means less laundry from accidents. I'm sure when I get motivated, Everett will rise to the challenge. So all in all, a great report! We continue to be so thankful that we are the exception to the rule. We are constantly reminded by doctors and therapists alike that Everett successes are not common for a micro preemie of his size, gestation and history. We give praise to God for his blessings in our little man's abilities!!!

We took Everett to see an eye doctor for a regular checkup a few months ago and were told that he has a "severe astigmatism." She, not being a pediatric specialist, didn't quite know what to recommend so we got a referral for another doctor who examined Everett and recommended glasses right away. We can't totally blame this on his prematurity, as I have been in glasses since I was five. There are genetics at play here...but I must confess that I am a little bummed for our little man. I know how it is to wake up and not be able to see. I know how it is to be the only kid in glasses. Let's be honest, the way people perceive and treat you changes. So I'm having a little pity party, but it will pass. We picked out a pair of somewhat cute frames (there isn't a whole lot to choose from in the all plastic, bite proof, squash proof, scratch proof, strap on variety). They come next week. I had hoped that the doctor would tell us we could wait until age three to put him in glasses but she said his condition is so severe that it could actually affect his brain development. He's to wear them full time, even during naps if he can keep them on. We shall see...wish us luck!!! The next item of business will be a hearing exam. While Everett seems to be able to hear just fine, we want to verify that his delay in language isn't hearing related. He passed his initial hearing exams at CHLA but continues to be at risk for hearing loss (specifically high frequency hearing loss) due to the plethora of antibiotics he received early in life. Wish us luck there too!!!

We are always thankful for the support from our family and friends. I really never tire of hearing what an inspiration Everett is or how much people have enjoyed watching him grow. We are thankful for a God who listens to prayer and provides us with what we need. Today, and every day, we are thankful that we don't have to walk through life alone and that our little boy has a life to live. Happy Thanksgiving from our family to yours!

Love,

The Bollinger Family



It will never cease to amaze me...

  

that this...

...became this!!!



Thank you March of Dimes!

Everett Turns Two!!!

Now & Then

My Dearest Everett,

As I rocked you to sleep tonight, on the eve of your second birthday, I couldn’t help but remember the first time I held you and how much has changed since then.  The first time I held you, your head fit perfectly in the space between my chin and chest.  As I held you tonight, we rocked cheek-to-cheek, as you are now so big that you barely fit on my lap.  In that moment, in the dark quiet of your room, I shed one tear…one tear for everything that could have been, and isn’t…one tear for everything that you are and for all the love that I have for you.

In this year, you have blossomed.  If Daddy and I had any lingering fears about your capacities or capabilities, you have certainly blown those concerns out of the water!!!  At one year old, you were just sitting up and rolling was your mode of transportation.  Now, at two, you are walking, running and climbing your way through life.  You never sit still…NEVER!  As if you are making up for those six months of lying in a hospital bed, your curiosity keeps you constantly moving.  We are exhausted from chasing you.  But we wouldn’t have it any other way!

Your first word was “Dada,” much to my dismay.  But it was shortly followed by “Mama” and a handful of other words.  Now your regular vocabulary includes 20+ words, with new ones debuting each day.  You are a quiet child…when it comes to speaking, anyway.  You save your words until you feel comfortable and new words are said at a whisper.  However, you LOVE to scream…just having discovered the modulation of your voice.  Unfortunately, this means restaurants are no longer a possibility so it is lots of home cooked meals for our family.  You feed yourself now.  You are one messy eater, a trait Daddy says you get from me.  You tend to shovel food into your mouth rather than intentionally place it there.   And you are just getting the hang of drinking from a cup. 

You do not shy away from strangers.  In fact, you are quite the flirt.  Upon meeting new people you are all smiles and giggles.  You freely give kisses and hugs.  Jack may be your favorite toy J  You are fascinated with children who are older than you.  You watch them with great intent and then try to imitate their mannerisms.  You want so badly to be so grown up.  You don’t understand that there are things that you cannot do just yet (like walk down stairs).  You are fearless. 

Out of that fearlessness comes frustration for the things that you cannot do.  Tantrums are commonplace in our house now.  These past few months have been challenging.  You understand so much more than you can communicate, and I think that upsets you.  You still listen (most of the time) when we tell you “no.”  When you don’t, I try to discipline you but find it hard because you often try to smile and kiss your way out of trouble.  More times than I’d like to admit…it works.  When you get an idea in your head, you pretty much stick with it until completion.  You are tenacious…not that we would have expected you to be any other way.  Your tenacity is what has kept you alive and allowed you to thrive. 

We have never taken one day of your life for granted.  Nor have we ever taken for granted all the things that you are able to do.  We give thanks to God everyday for you, your life, and everything that you are because your life could be so much different…so much harder.  We are thankful for the things that are, but we are also thankful for the things that are not.  Your birthday is always an emotional time.  I wonder when that will change but somehow I already know that it never will.  The day of your birth was the beginning of my love for you.  Every day since, I find another reason to love you even more.  Happy 2^nd Birthday to our precious boy.

Love,

Mama and Daddy

One Year Old

Two Years Old

Quantifying Everett's Courage (Everett is 23 months old)...

Dear Family and Friends,

I recently came across a program sponsored by a not-for-profit organization that aims at helping children with chronic medical conditions express their experience through art.  I, of course, jumped at the opportunity of providing Everett with something beautiful that represents all the challenges he has been through in his short life.  This wonderful program is called Beads of Courage, and per their own mission statement, they are an “organization dedicated to helping children with serious illness record, tell and own their stories of survival.” 

In its beginnings, Beads of Courage was geared toward helping children with blood disorders and cancers, cardiac conditions, and burn injuries document their hospitalizations and treatments.  Then just last year, they added a NICU component.  Of course, for the NICU children, it is their parents assembling the art rather than the children, but I still feel as if it is serving an important healing role for baby and parent alike. The program works like this: for a participating NICU, each baby is given a tally sheet that has all the various NICU treatments listed.  As a nurse or parent does one of these treatments, a tally mark goes on the sheet.  For each tally, a corresponding colorful glass bead is earned by the baby, which eventually becomes a brightly colored necklace complete with the baby’s name in beads on it.  Each bead tells of a treatment milestone and for a hospital that participates, the tally sheet would be accurate (amazing!)  For Everett, neither Sierra Vista or CHLA participates in Beads of Courage (something I plan on changing very soon, by the way), so I had to estimate how many treatment milestones Everett has earned.  I did this by looking back through his updates and the pictures we took while he was hospitalized.  In the end, the tally numbers were overwhelming.  We always knew our little man as strong, but with perspective like this, it takes on a whole new meaning. 

Everett’s milestones during his 157 day hospitalization (not including treatment milestones since he has been home)…

©       2 admissions

©       7 central/PICC lines

©       5 developmental clinic visits

©       19 weeks on TPN

©       3 cranial ultrasounds/ 3 ECHOS

©       1 ambulance ride/ 1 helicopter ride

©       2 rounds of surfactant therapy

©       5 major feeding transitions

©       3 surgeries

©       5 days on blood pressure support/ 4 days with caudal block

©       157 nights away from home

©       10 days in isolation

©       41 IV starts/ 142 blood draws

©       5 lumbar punctures

©       38 Chest Xrays/ 3 Upper GI/ 1 Lower GI

©       23 blood transfusions

©       23 NG(feeding) tubes/ 4 repogles (feeding tube to suction)/ 1 Foley catheter

©       66 days of intubation (with 7 separate intubations)

©       21 invasive eye exams/ 1 hearing exam

©       12 physical therapy visits/ 41 occupational therapy visits

©       6 parental education, which include Everett being the youngest patient at CHLA to receive a caudal block, me learning to breastfeed and pump, Zac becoming infant CPR certified, learning how to care for Everett’s ileostomy, learning to give Everett’s home medications, and learning how to mix Everett’s milk (believe it or not, that was the most complicated one!)

©       9 parental “firsts,” which include me holding Everett for the first time at 14 days old, Zac holding him at 31 days old, his first bath, his first haircut (shaving his head), changing the ileostomy bag unassisted, his first poopy diaper, each of us feeding him, and reading him his first book

©       1 discharge

And those accomplishments most dear to our hearts include 

 four Acts of Courage and eight Special Recognition.

Our Acts of Courage include: leaving Everett for the first time at CHLA, our beloved nurse Sarah basically forcing the doctors to extubate him after his first surgery, Zac spending Christmas day by himself at the Ronald McDonald house at CHLA so Everett wouldn’t be alone on his first Christmas, and me telling the doctors that if they didn’t perform his second bowel surgery, I was going to find a doctor somewhere else who would.  If not for each of these Acts of Courage, our Everett wouldn’t be here!

 
As for our Special Recognition, we have one for Dr. Grikscheit, who thanks to her cutting edge research in bowel disorders, knew just what to do with our sick little boy, one for our beloved nurse Sarah, because of the friendship we still carry with her today, and five for Pastor Vince Llamas, who drove down to CHLA on five separate occasions to pray at Everett’s bedside (we know that it is because of the power of prayer that our Everett lives today), and one for our families who supported us through each step of our long journey.  We love each of these people dearly and will never forget the kindnesses that they have bestowed upon our family!

So what does all this add up to?  A 17 foot long necklace of over 670 beads!!!  While we realize that Everett can’t wear it (heck, yesterday he was trying to eat it!), I do imagine him taking it to Show-and-Tell someday.  That was my main idea in signing up for the program…helping Everett quantify his courage.

Everett's Beads of Courage

Everett playing with the necklace...more like attempting to choke himself with it...gotta love a toddler!

As you can tell from the picture, our little courageous man is getting SO BIG!  “So big” is actually a word phrase that his therapist and I are trying to get him to say, so I’m smiling as I type this J  Everett has been growing like a weed these past months and is now measuring 31.5 inches tall.  Last month alone he grew over two inches…yes TWO inches!  According to our scale at home, he weighs 22 lbs, but we will get his actual weight when we take him for his two year well baby visit next month.  Everett has definitely become a toddler boy...all rough and tumble, all the time!  These past few weeks have been especially challenging with lots of tantrums and fussiness, but we are always thankful for “normal” toddler behavior out of our micropreemie boy. 

Everett is not only walking steadily now, but is on the verge of running, can get one foot off the ground when attempting to jump, can walk up and down stairs with a one hand assist, and is even feeding himself with spoon and fork!  WOW!!!  As for language, we’ve seen an explosion in that department just this past week (which should help with the tantrums and fussiness).  His vocabulary now includes: “Mama, Dada, dog, ball, up, open, NO (said with stern stare), hi, bye, more, baba, and please.  His signs (his therapist has been working on sign language) include: help, eat, more, yes, no, and thank you. 

His personality is changing by the day as he gains new-found independence.  He is fearless…absolutely FEARLESS, he wants to be independent but still asks for help, he is sweet and submissive, thinks that his smile can get him out of “Timeout,” thinks splashing Mama during bath time is HILARIOUS, loves to ride the dog like a pony, screams Dada when he hears Zac’s truck, constantly needs music on so he can spontaneously dance, wants to read Goodnight Moon at least five times a day, colors with crayons (sometimes on the walls) and is sleeping in until 9am (my personal favorite trait right now!)  These are just a few of the hundreds of qualities that we find endearing in our toddler boy.  Oh and did I mention that he gives kisses…big, open mouth, drooly, tongue kisses?!  How precious is that!  All in all, he’s growing up. 
With his second birthday now only three weeks away, we can hardly believe it’s true, our little boy is turning two J 

With Love,

The Bollinger Family 

First Beach Day

Santa Barbara Zoo...E was not as impressed as we were

Checking out the birds at Avila Valley Barn

Everett is almost TWO!