Little Snugglers

Darin took these of the kids the other night...both sound asleep snuggling with their furry little friends.

So Cute!

                    So Sweet!

Thanksgiving!

Thanksgiving for us this year was a blast!  I can't think of anything better than spending several days in a row with family!  We did lots of cooking, lots of laughing, lots of playing and lots of crafting!

All the cousins are so grown up and they played so well together!

We've got Keaton on the top left, he's 6 and his sister is Kelbie, she's 4.  Then Mason is 8, he's holding Tessa (such a great big cousin), and his two brothers are Haden, he's the blonde headed 4 year old and Rylan, the adorable 2 year old in front.  And of course, there's our two, Parker 4 and Tessa 2 :)

And here's the Smith family ready to open early Christmas presents!

And the Black family!

Grandpa and Grandma Karen gave Santa a run for his money ;)

We spent some time at the nearby lake

and lots of time chillin at home

I got to spend lots of time with Parker and the kids outside...I was thankful to have so many sets of hands to help us with Tessa so we could easily divide our time!

sweet little Kelbie giving us all a good laugh!

No doubt Tessa's little heart is FULL!  She got some precious one-on-one time with each of her aunts, uncles and grandparents.

Here she is with Uncle Kyle

  

And Aunt Lindsay

Some snuggle and playtime with Grandpa

Parker had lots of fun with Rylan, he's a good big cousin :)

And here's where the crafting comes in...Hillarie and Lindsay had such great ideas of how we could spend some time together...having fun and making beautiful creations!

It wouldn't have been possible without the boys though...thanks to Kyle and Donald for all your hard work with the wood!

All the big kids playing UNO!  Mason did a great job helping everyone play!

 Here's Tessa and Aunt Hillarie sharing sweet moments

 And some much needed time with her Uncle Donald ;)

 The holiday was complete ~ and we had lots to show for it ;)

I am so incredibly grateful for the memories we continue to make each and every year!

Thanksgiving 2012 was a great one and we feel so blessed! 

~Whitney

When Sickness Strikes...

Well, Miss Tessa had some kind of cold virus/ear infection a few weeks ago, then last week she started vomiting for a few days (I assumed it was a stomach bug), and then by Saturday, everything went from bad to worse!

By Saturday evening her breathing treatments were no longer working.  They would slightly improve her breathing for maybe a couple hours, if that.  She had a very dry and painful cough and was miserable and completely exhausted.  Darin and I were up with her all night on Saturday night and Sunday was a doozy.  We suspected pneumonia, and were doing everything we could to try and make her comfortable.  Darin and I learned how to do CPT (chest physiotherapy) while we were hospitalized in the winter of 2010 when Tessa came down with RSV, so we put those skills to work and tried to help her clear the junk out of her lungs.   

First thing Monday morning I called the doctor and they got her in.  Her saturation levels were at 95%...at around 92% they would have recommended hospitalization and for Tessa to be put on oxygen.  Luckily we weren't to that point yet.  She got a Rocephin injection in each leg to help jump-start her recover and we got her started on a Zithromax prescription that afternoon.  The doctor said she suspected that the virus Tessa had a few weeks ago actually turned into pneumonia...and that the vomiting she had for a few days was part of the pneumonia setting in...made sense.

Our weekend looked a lot like this...

And this... 

she got lots of lovin from Daddy and Mommy

 By Monday evening, things were looking a little brighter!

 She even felt good enough to try out her new big-girl seat :)

By Tuesday evening, she was feeling up for some dinner 

just the sweetest and cutest little girl I know...

And after dinner...lots and lots of smiles!

It was torture not seeing these for a few days

She is definitely still on the mend, but she's sleeping more at night and feeling a little better each and every day.  Parker has been saying prayers at night for Tessa to feel better.  He is such a sweetheart.

We're ready for things to get back to normal and for everyone to be healthy, but we are so thankful for God's protection over Tessa through all this and for the wonderful Therapists and Medical staff in our lives to help us, and who know how and when to respond!

~Whitney

Thunder Up!

Parker and Grandma and I went to a Thunder game this week and had a blast!

A huge thanks to Daddy for taking care of Tessa for the evening so we could go!

Tessa had a pretty rough week with the stomach bug :( but she's feeling better today!

~Whitney

Just Thoughts...

A dream of compassion. 

Compassion: is the virtue of empathy for the suffering of others.

Empathy: the ability to understand and share the feelings of others.

I dream of the day where there is a deep understanding of who people are, and of how we all suffer.  I dream of the day where, instead of walking around judging and questioning other people’s behavior, we take the time to try and understand what it’s like to walk in their shoes.  Not a day goes by that I don’t interact with someone and wonder…what is driving their reactions, what is it in life that causes them pain, what is it in life that motivates their strength and goodness.  We are all so much more than we see on the surface.  There are times that we are the exact opposite of what we show on the surface.  We all get up every day and work to do a job, but I truly believe, that any job can be done better, when we choose compassion and understanding.  How do you motivate someone else? I believe, you dedicate yourself to learning more about them, to understanding how they are most appropriately motivated.  How do you manage a team around you?  I believe, you dedicate yourself to learning more about the individual connections and unique interactions that make your team, a team.  I don’t believe you can improve upon anything, until you understand the current state of existence.  We all work with people.  Some of us have a greater strength in the details and technicalities of our work, others of us thrive on conversations and interactions that help get a job done.  Both are necessary and vital to the success of any operation.  I dream of the day where we quit analyzing the negative qualities about those around us, and commit ourselves to a better understanding of who people really are.  I dream of the day, where when we stop to ask someone how they are doing, we truly hear and embrace their response.  Programmed responses to questions designed to deliver compassion are destroying the foundation of relationships, but what else can be expected when compassion is absent.  It is as if ‘compassion’ implies ‘overly emotional’ and people steer clear, but I just can’t help but imagine how things could change, if we all stop for just a minute and consider how refreshing it would be to know that the people around us, that we interact with day-to-day, truly cared about us…beyond the surface.  I dream of the day where compassion is the driving force behind restoration and unity.   

~Whitney

Neurology Update

We had our appointment yesterday with Tessa's neurologist and we learned some things...actually, it's probably all stuff we were told over 2 years ago when she was originally diagnosed...but hearing it again yesterday, was most helpful!

Basically, Tessa has Symptomatic Localization related Epilepsy.  The type of seizures she experiences are called Complex Partial.

Wikipedia defines a complex partial seizure as an: epileptic seizure that is associated with bilateral cerebral hemisphere involvement and causes impairment of awareness or responsiveness, i.e. alteration of consciousness.

I found the Wikipedia description of Presentation helpful (and complicated ;) as well:
Complex partial seizures are often preceded by a seizure aura.  The seizure aura is a simple partial seizure.  The aura may manifest itself as a feeling of deja vu, jamais vu, fear, euphoria or depersonalization.  The seizure aura might also occur as a visual disturbance, such as tunnel vision or a change in the size of objects (macropsia or micropsia).  Once consciousness is impaired, the person may display automatisms such lip smacking, chewing or swallowing.  There may also be loss of memory (amnesia) surrounding the seizure event.  The person may still be able to perform routine tasks such as walking.  Witnesses may not recognize that anything is wrong.
Complex partial seizures might arise from any lobe of the brain.  Complex partial seizures most commonly arise from the mesial temporal lobe, particularly the amygdala, hippocampus, and neocortical regions.  A common associated brain abnormality is mesial temporal sclerosis.  Mesial temporal sclerosis is a specific pattern of hippocampal neuronal loss accompanied by hippocampal gliosis and atrophy.  Complex partial seizures occur when excessive and synchronous electrical brain activity causes impaired awareness and responsiveness.  The abnormal electrical activity might spread to the rest of the brain and cause a secondary generalized tonic-clonic seizure.

So obviously, what we know, is that Tessa suffered a brain injury from the CMV viral infection in utero.  The calcium deposits on her brain from the virus caused scarring to the white matter and abnormalities to the grey matter.  When the EEG and MRI were done in August of 2010 at time of diagnosis, these abnormalities were detected.  Seizure activity was not detected at the time of the EEG, but the 'single spikes' on the reading of the EEG give a pretty good indication of the potential for seizure activity.  The general area of Tessa's brain where these abnormalities were detected is the top left side.  A repetitive 'spike' on an EEG reading would indicate seizure activity, but any 'single spike' is enough to return an abnormal EEG.  This is all good to know and great to hear again, because we realized there would be no reason to ever repeat an EEG...because with Tessa's known brain injury/brain damage, we know that the EEG would return abnormal results.

So, as far as the Gelastic seizures...we have a fairly simple, proactive plan.  One thing that Darin and I discussed, is that neither one of us have ever really 'checked' on Tessa during her 'laughing parties' in the middle of the night.  I mean really....if the girl is laughing, why disturb her?...especially when mom and dad could use some sleep!  To explain a bit more, Tessa still has lots of crying spells in the middle of the night.  We don't ever know exactly why or what is causing them, but we always go to her rescue.  Sometimes it just takes a few minutes to turn her night-light-sea-horse on, give her a pacifier, rub her back and hold her hand for awhile; other nights it's so intense it takes changing her entire environment: putting her in the living room with lights on, TV on, maybe giving her a bottle...anything we can do to try and help soothe her or distract her from what is ailing/upsetting her.  So, our new simplest plan of action, is to begin 'observing' or 'checking' on Tessa during the 'laughing party' times of the night.  Any time during the day/nap-time that we've checked on her, when she is just talking or laughing in her room, it always upsets her!  If she sees us and then we go away without spending time with her or holding her hand, her feelings get SO hurt!  So, we got accustomed to not bothering her in the middle of the night when she sounded to be just fine, so that hopefully she would eventually drift back off to sleep on her own.

So, what we will start doing now, is checking on Tessa and observing her state of consciousness during her 'laughing parties'.  If we turn on lights and are able to get her attention and be acknowledged by her, we can feel confident that she is not seizing.  However, if we find that she is in an altered state and not responsive to our presence, it will confirm that she very well could be dealing with seizure activity.  If we do in fact believe we observe the seizure activity in the middle of the night, we now have a plan.  There are a couple of different scenarios that would be our next steps of action.  The closest Intensive Epilepsy center is in Fort Worth, TX...basically we would be admitted there for about 5 days and they would hook Tessa up to an EEG and observe her and monitor the potential seizure activity and hope it could be detected by EEG during her stay.  This would provide her doctor with the information she would need to determine additional medication options, as well as, the potential damage the seizures could be causing to Tessa's brain.  The other alternative, which would be an excellent option for our family, is basically an in-home EEG.  There is a company that would come and deliver all of the equipment and get Tessa 'assembled' with all the EEG gear.  She would be monitored in our home by us for several days, and then the company would come back to collect the equipment and send the results from the EEG directly to Tessa's doctor.  Who knew something like this was available ~ talk about convenient!

So, long-story-short, we are obviously praying that Tessa's laughing parties are indeed just unusual joyous occasions for her, and nothing more.  The injury to Tessa's brain could be the very reason for both her crying and laughing spells in the middle of the night...there's just no way to know how the abnormal electrical activity that's going on up there could be affecting her at any given time.  I mean, it takes three 1 mg tablets of Melatonin to get this girl to fall asleep every night...I have a hard enough time shutting my brain down to go to sleep, I can't imagine what life would be like or how frustrating it could be with a brain injury.  We may have some sleepless nights in our future in order to get this necessary observation completed...but it's kinda hard to be too upset about it...best case scenario...Tessa invites us to join in on her joyful laughing parties and we can just celebrate and be thankful for that extra one-on-one time with her!  

Whew, I'm exhausted just writing about it all!  Gald to be more informed and confident about a fairly simple, proactive approach to a very complicated and mysterious realm for our Little Miss.  Anyone that has spent any kind of time with Tessa, knows she is a giggler!  Her giggles are a gift from the good Lord Himself, because they can brighten any day and bring joy to any situation.

~Whitney

An Outing to the Park!

A fun fall day at the park!!

~Whitney

School Fun!

Friday November 2nd was a fun family day at UCO!!

~Whitney

Oxymoron

All I have to say is: Gelastic Seizures....Really?

The term Gelastic originates from the Greek work "Gelos" which means laughter.

I mean, come on....after posting: http://bynumfourblog.blogspot.com/2012/10/tessas-own-little-party.html ...I couldn't feel any more like a fool.

I just so happen to be reading on the CMV Mommies Group facebook page and came across a post about this topic.  Obviously I'm not expected to just know that there is such a thing as a 'laughing seizure'...but it is a profound oxymoron.

We have Tessa's 6 month neurology follow up appointment this month...and I would have NEVER thought it would have been important to bring up the 'laughing parties' she's been having in the middle of the night.  It's definitely on the agenda now.

Good grief, talk about learning something new every day.  Here's hoping and praying for the best!

~Whitney

Trick or Treat

Last night was fun!  We got Parker and Tessa dressed up one last time for legit trick or treating. 

 Not sure what was up with the parental-camo theme, other than surely it directed the focus to our adorable two kiddos ;)

We weren't super comfortable trick or treating in our new neighborhood, 

so we joined some friends that live close by! 

Check out this place!  Now that's some Halloween decorating at its best! 

I tried so hard to get a cute picture of Tessa and Daddy...this one was at the house pictured above...

she just wasn't quite sure about it all ;) 

This silly little Twizzlers meant so much to me last night!  One house we stopped at, this super sweet lady came all the way out of her house to the sidewalk, with her huge bowl of candy, and leaned in close to Tessa in her stroller to let her pick out her very own, and very 1st, piece of Halloween candy.  I could just tell, Tessa felt super special and like such a big girl.  She held on to that silly little Twizzlers for a good 3 to 4 houses before she dropped it.

I love those moments, when such a little thing is so HUGE.  It's priceless when just one person takes a little extra time to acknowledge Tessa and go out on a limb to give her the opportunity to participate along with everyone else. 

 Love. Those. Moments. 

~Whitney

Best Big Brother

Parker held Tessa's hand the whole way to therapy on Tuesday so she wouldn't cry.  It was just me and the kids that evening since Darin had parent/teacher conferences at school.  Parker wanted to make sure I knew he was going to do everything he could to help me, because he wanted to help make me and sister happy.

He's so young to be such a little protector!

When we pulled up in the parking lot Parker said "you know Mommy, Tessa shouldn't have to work all the time, they really should just let her play" ;)

He definitely helped his sister play a little during her Auditory/Verbal therapy session.  Everything is always a little brighter and a little more fun when big brother is around!

And then some entertainment for the car ride home...

~Whitney