"Tessa Rayne" 6 Years Ago

"Tessa Rayne" - gatherer of provision

A special meaning shared with me by my oldest sister and something that gives us such encouragement and strength:

So when I looked up "Tessa" and what it means I found that it means "gatherer" and when I think about rain it is always provision. So her name Tessa Rayne together means gatherer of provision. And these verses (Isaiah 55:9-12) to me show that it is God alone who makes provision and when He does it is undeniable and is never for nothing but always has purpose.

It's been 6 years since Tessa's hospitalization and diagnosis...6 years of seeing God's immeasurabe provision for Tessa and our family.

The sweet smile on her face in the picture below was the day after we learned of her Congenital CMV diagnosis...it's a treasure and a reminder that God had us in the palm of his hand.

~Whitney

Physiatrist Update

Little Miss Tessa is growing up ~ all 23 lbs and 35 inches of her!  And with that comes the harsh realities that go along with cerebral palsy and generalized spasticity.  We had a follow up appointment with Tessa's Physiatrist yesterday afternoon and were so grateful to have Melody (Tessa's PT) come too.  We anticipate that the changes that have been happening to Tessa probably coincide with her recent growth spurt.  In the last year, she has fluctuated between 21 and 23 lbs and she has grown from 34 to 34 1/2 inches and then most recently, from 34 1/2 to 35 inches.  The combination of the colder weather and the growth spurt have made her quite the tight/stiff little girl.  This obviously makes everyday things a bit more challenging; like changing her diaper, putting her clothes on, trying to hold and carry her, getting her to stay positioned properly in her equipment, keeping her feet in the proper position in her dafos...etc.  But more importantly than all of that, is how Tessa's increased tone (or spasticity) is undoubtedly stressful, frustrating, and painful for her!  We just know Tessa would love to start using her new KidWalk more, but at this point, her spasticity is making it incredibly challenging for her.

I can remember, so clearly, the day she was diagnosed and her neurologist saying to us "the damage has already been done to Tessa's brain, but the way it affects her body will begin to look different over time".  Basically, as we begin to have more expectation of movement for Tessa, it might appear as if things are getting worse, but it's more that our expectations have changed and the effects of cerebral palsy are becoming more and more apparent.  Tessa's therapists have been noticing more and more instances where Tessa's tone proves to be an interruption to what she is trying to do.  Tessa will undoubtedly have to learn how to make her tone work for her...what doctors refer to as 'functional tone'.  For instance, she has gained so much control in her neck and trunk, and at times, if her head begins to fall forward...she will try and correct it, and when she does, she ends up thrusting her entire body backwards.  This is when the tone takes over, and instead of a simple recovery of her head falling forward, she ends up thrusting completely backward.  It is possible for Tessa to learn how to make her tone work for her, we've seen her do it, but there are instances where it is completely out of her control and that is when it's time to consider options to help her.

We discussed a couple of things yesterday, a systemic option, which would be an oral medicine that Tessa would begin taking that would affect her entire body, or the botox injections option, which would be an injection that would target a particular muscle to help achieve desired results.
I found some pretty good information at: http://www.mayoclinic.com/health/cerebral-palsy/DS00302
Medications that can lessen the tightness of muscles may be used to improve functional abilities, treat pain and manage complications related to spasticity.  It's important to talk about the risk of drug treatments with your doctor and discuss whether medical treatment is appropriate for your child's needs.  The selection of medications depends on whether the problem affects only certain muscles (isolated) or the whole body (generalized).  Drug treatments may include the following:
Isolated spasticity.  When spasticity is isolated to one muscle group, your doctor may recommend injections of onabotulinumtoxinA (Botox) directly into the muscle, nerve or both.  Severe weakness is a possible side effect.  There also is some evidence of more-serious side effects, including difficulty breathing and swallowing.
Generalized spasticity.  If the whole body is affected, oral muscle relaxants may relax stiff, contracted muscles.  These drugs include diazepam (Diazepam Intensol, Valium), tizanidine (Zanaflex), dantrolene (Dantrium), and baclofen.  There is some risk of dependency with diazepam, so it's not recommended for long-term use.  Its side effects include drowsiness, weakness and drooling.  Side effects of tizanidine include sleepiness, weakness, low blood pressure and liver damage.  Side effects of dantrolene and baclofen include sleepiness.  Baclofen may also be pumped directly into the spinal cord with a tube.  The pump is surgically implanted under the skin of the abdomen.

Under the "Complications" section it addresses the following:
Muscle weakness, muscle spasticity and coordination problems can contribute to a number of complications either during childhood or later during adulthood:
Contracture.  Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity).  Contracture can inhibit bone growth, cause bones to bend, and results in joint deformities, dislocation or partial dislocation.

The reason the 'Complications' section is helpful, is because this helps explain what it is we are trying to help Tessa avoid.

This is not a good stopping point, but it's all I've got for today...but it's a fairly good recap for me ;)

~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

Hearts for Hearing

Hearts for Hearing has been in our lives for almost two full years now.  They recently redesigned their logo and website and are sharing their mission of Hope! They have dedicated a place on their new site to "Stories of Hope".  Giving parents an opportunity to share their own personal story and experiences at Hearts for Hearing. 

http://www.heartsforhearing.org/

I was excited to take this opportunity to reflect on just how much this organization, and the amazing people that work there, have done for our family.  On Tuesday at therapy, we donated Tessa's tiny pink hearing aids   back to Hearts.  It was a little emotional.  Those hearing aids symbolize so many things for us: the 'original hope' that we gained in the very beginning of our journey with Tessa, our first experience down this path of many-accessories for her, the new and necessary idea of taking a day at a time, and marveling at God's provisions every moment along the way.  Come to find out, there was a baby that was just diagnosed that afternoon that was going to be able to use Tessa's loaner aids.  And not only that, but any time a child's aids are down or having to be worked on, loaners allow Hearts the ability to make sure their lives aren't disrupted during that time.

We are thrilled to look back and see how far we've come.  It is very exciting to see the ways that you can make, what could feel like a devastating time in your lives, an opportunity to pay it forward with a grateful heart from having walked that path before.    

http://dev.heartsforhearing.org/stories/

Our Story:

Hearts for Hearing is a place of hope, and for our family, that hope has created many joyful celebrations!

Tessa was born on April 8, 2010 at 38 weeks weighing just 4 lbs 15 oz.  We were told she was healthy, just small, and that everything appeared normal.  On July 30, 2010, at just 3 ½ months old, Tessa was hospitalized and a series of events lead us to learn of her Congenital CMV diagnosis.  I didn’t know I had CMV while I was pregnant with Tessa, but the virus ended up attacking her tiny little body before she was even born.  During our hospital stay, many discoveries were made: Tessa had severe brain damage on her cerebral cortex and some on her visual cortex which had resulted in Epilepsy, Cerebral Palsy (CP) and Cortical Visual Impairment (CVI). We were also told the virus had potentially caused damage to her eyes and ears, as well.  On August 3^rd Tessa failed a follow-up hearing screening (she had passed her newborn one), and on August 10^th, we had her very first appointment at Hearts for Hearing to determine a further diagnosis of bilateral, profound, sensorineural hearing loss.

 

In a matter of 2 weeks, our lives had changed in ways we could have never imagined.  We knew the Lord had a very special plan for our daughter and the days to come would require our faith in His immeasurable grace and provision of strength.  If there is anything we have learned; it’s that this journey was never intended to be traveled alone.  I didn’t realize that, in those initial days of diagnosis, but Hearts for Hearing did…and they began their journey with us.  It takes an incredible level of compassion and understanding to make a transition like this, so seamless.  And it takes a very special group of people to join in these intensely fragile journeys.  The umbrella of this kind of organization is hope…and it is carried out in the most beautiful way.  Hearts for Hearing was such a soft place to fall, and I am so grateful they were the first ones to rally around us after our hospital stay.  They have definitely helped define our journey of hope. 

By August 17^th, just 14 days after Tessa’s failed hearing test, she received the cutest little pair of pink hearing aids.  We have been participating in Auditory Verbal therapy since August of 2010; Tessa received her 1^st cochlear implant on the right side in June of 2011, and she received her second CI in June of 2012.  There has been so much joy on this path of hope and hearing.

 

We believe the Lord is sovereign in our lives and works all things together for good.  Hearts for Hearing has been an answer to our prayers for a time in our lives when we barely even knew what to pray.  “Thank you” would never be enough to express the way we feel in our hearts towards this incredible organization, but I know the amazing changes in Tessa’s life are evidence of the gift they have given to our family.  In almost 2 years, we have celebrated more than we could have ever imagined and our sweetest of celebrations have been within the walls and among the staff of Hearts for Hearing.  

The BynumFour

Darin, Whitney, Parker & Tessa Bynum
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Too fun!
I also found a picture of Tessa from last September when they did a little photo shoot of some of the kids attend Hearts for Hearing:
http://dev.heartsforhearing.org/audiology/diagnostic/fm-fitting/

~Whitney

Tessa's Story

Written so eloquently by a dear friend...

Interview with Whitney Bynum

EC535 – Writing to Inspire

Marvin “Kelly” Johnson

Baptist Bible College and Seminary

Imagine for a moment that you have been given the news that you are very sick. You were given no indications of this illness; you have no idea how this disease will hurt you, nor if there is any hope left. Throughout your life you have faithfully served God and have felt his blessings warm you, but upon hearing this news you feel alone for the first time. Even though everyone around you is offering support, you are still stunned, frightened, and face an unknown future. If this thought sends a cold chill down your spine, now realize that it is not you that received this prognosis, but your 3-month old daughter.

Darin and Whitney Bynum had been married almost six years and were anxiously awaiting the birth of their second child.  This young couple, in their twenties, were unaware of the journey they were about to embark on. Their first child, Parker was almost two years old and like any young boy, he was constantly full of energy and kept his parents busy. On April 8^th, 2010 at 10:19pm, Miss Tessa  Bynum entered into the world at 4 pounds, 15 ounces and 19 inches long. She was only 2 weeks early, but was very tiny. The doctors reassured the worried parents, “she’s just small”.

In the weeks that followed, Whitney felt in her heart that something was not right. Call it Mother’s intuition or just worry (Whitney’s self-proclaimed middle name), but she knew that the symptoms that her daughter was displaying went beyond the colic that doctors had diagnosed her with. She was constantly in prayer asking, “for God’s help for her to accept Tessa for exactly who she was and to rest assured that her life was in His hands”. In the days and weeks that followed, Tessa did not seem to be growing and was constantly fussy. Each day was a challenge, but the family was hanging on, “until that magical 6-month-marker when babies typically grow out of the colic” stated Whitney.

In July of 2010, the couple decided to take a quick weekend trip from their home in Oklahoma, back to Amarillo, Texas. Tessa had been fighting with an ear infection and had already completed one round of antibiotics; so the couple made an appointment with their pediatrician before leaving town.  Whitney describes the doctor’s demeanor on this visit, “his approach was very different.  All we knew was that we had a sick baby on top of the existing colic…but he seemed to look deeper.”  After consulting with other physicians, the concern was that this young child had developed meningitis, as it appeared her ear infection had spread.

The worried parents were directed to the hospital across the street, where Tessa would be admitted to the Pediatric Intensive Care Unit. Scared, frightened, and confused, Whitney describes this moment, “Little did we know, when we walked in the 10^th floor unit that Thursday morning…that it would be the beginning of a week-long stay that would change our lives.”

The results of the meningitis test proved negative, which began a barrage of other medical procedures in an attempt to find the answer. Throughout this stressful time, Whitney insured that every possible moment was spent holding Tessa, surrounding this tiny, fragile body with motherly love. It was during this time of bonding that Whitney first noticed that Tessa was having a seizure, “She was resting in my arms when all of the sudden her eyes started repeating a typewriter motion for about 15 to 30 seconds”.  As a result of this new symptom, a CT scan was ordered for the first thing in the morning. Several hours later two doctors and a nurse appeared in Tessa’s room. The nurse would stay, while these young, frightened parents were asked to accompany the doctors to a conference room.

“There are no words to describe the pit in my stomach and the ache in my heart during that walk down the hall.”, stated Whitney. In this meeting her and Darin were told their daughter had severe brain damage and, “The nature of the damage was calcium deposits on her brain…consistent with the damage to a fetal brain from a virus called Cytomegalovirus”. According to the centers for disease control and prevention, “Infection with cytomegalovirus (CMV), a member of the herpes virus family, is very common. Between 50% and 85% of the people in the United States have had a CMV infection by the time they are 40 years old.” . This disease is normally not the cause for any concern and once infected, the body retains the virus for life.

Whitney had never been exposed to this virus, but somehow had become infected while carrying Tessa. Although she was unaware of the symptoms herself, this virus was unknowingly attacking her daughter.  Only now was she aware that this virus could have damaged Tessa’s eyes, ears and brain.  Immediately she began to blame herself and she explains that she was flooded with questions, such as, “what have I done to my baby … I did this … this happened to her because of me … if I had already had CMV in my life, this would not have happened to her…therefore the fact is, this happened because of me”. It was at this moment that God held onto this faithful couple and sustained them. Whitney explains exactly how God revealed His face, “He delivered me so quickly and put before us a path, a plan, a direction…and ultimately a journey of faith that now involved a precious little girl that would change our lives in ways we could have never imagined. “

These two young people were both children of preachers and had accepted Jesus at a very early age. Whitney describes their spiritual position before this experience as one where they, “found ourselves settled into more a routine of religion than engage with the Lord”. After hearing sober words from two doctors, Darin and Whitney found that the path God placed them on had curves. Instead of deciding to give up, they have grown closer to each other and to God. At the very moment when many couples may withdraw, Whitney talks how her and Darin found strength in each other, as God has designed. “I won’t ever forget in the conference room, after being told that our 3 1/2 month old daughter had severe brain damage, Darin reaching over and grabbing my hands with the tears just streaming down my face, looking me in the eyes and saying to me ‘you knew…you knew something was wrong’. I remember crying and asking Darin ‘how are we going to do this?’ … he said ‘We already are!’  He reminded me how we had been ‘doing this’ for 3 ½ months now… we had been learning how to love Tessa through all her tears and all her pain without even understanding the degree of what was wrong.”

Throughout the days, weeks and months that have followed, this family has received tremendous support. Whitney describes how her Sisters immediately drove to her, “My sisters have been the strongest support system of love and encouragement!  I would not be where I am today, on this journey, without the Lord divine provision of amazing sisters.” Pastor Sam Bynum and his wife Karen are Darin’s parents. Whitney adds how much they provided help when things seemed incredibly dim. “And of course….my amazing in-laws.  Sam and Karen’s love and support has been the most incredible thing to experience. The biggest thing that stands out in my mind was the almost 2 months that Karen came and lived with us during the week, each week for almost 2 months, to help us care for the kids after they were unexpectedly kicked out of the daycare they had both been enrolled at.”

Help and encouragement has come from outside the family as well. Recently Whitney’s employer, SandRidge Energy, heard of Tessa’s condition. Through a program known as Change Together, the employees collected money in piggy banks throughout the company. This was gathered together and provided Tessa with her very own iPad, which is used for rehabilitation and therapy. Others have provided gift cards, meals, financial support and even a last minute gift from a co-worker that provided a special swing for Tessa which was not covered by insurance.

Their story demonstrates strength despite overwhelming challenges, but the real encouragement of this family is the family itself. Tessa’s older brother has always treated his baby sister with “tender love and kindness’. Whitney describes the interaction between the children, “Parker has asked in his own gentle way why she doesn’t crawl or walk  … Parker understands but it doesn’t make a bit of difference.  He LOVES her.  He would do anything for her…and he does!  Parker is by far Tessa's biggest motivator!”

In her little life, this young lady has provided inspiration, motivation, and love for everyone she comes into contact with. Her smile is infectious and is genuinely one of the happiest babies God has brought into this world. Her parents define God’s mandate to trust in him. When asked what the prognosis is for Tessa, her mother explains:

 “Well, we do know that we have eliminated “can’t” and “won’t” from our vocabulary…that’s for sure!  Because of the resiliency of a baby’s brain…the possibilities are truly endless.  I was just thinking about it the other day…Tessa is 19 months old and just now exploring the world of rolling over…when you think about it, that’s really only about a 12 month delay.  THAT’S NOTHING!  Tessa will meet her milestones in her own time…and we will be there to celebrate each and every one with her.”

“Our goal is, and always will be, to love her, care for her and encourage her.  We always hope that she stays healthy, because things can definitely get challenging and a little scary with her health at risk, but we won’t live in fear for if or when she does get sick, we will celebrate the health that she has, marvel in the accomplishments she makes, and thank the Lord every minute of every day that this is a journey that we have the privilege of being a part of!”

Darin, Whitney, Parker, and Tessa, may the Lord bless and keep you. It is my prayer that I may tarry long enough to see Miss Tessa proclaim Christ at her Grandfather’s church.

written by Kelly Johnson 11/2011

Looking Back - Tessa's Arrival

Tessa arrived on April 8, 2010 at 10:19 p.m. At 38 weeks, she weighed 4 lbs 15 oz and was 19 inches long. She was "healthy just small" they said.

Other than some jaundice, Tessa's only other struggles were maintaining her body temperature and gaining weight. They ran lots of tests, but everything was coming back normal. It was good news, but there was still so much confusion. It wasn't a comforting thing to see perplexed doctors. I was reluctant for weeks to post any pictures of Tessa anywhere. I had an aching feeling in my heart that something wasn't right. She was born at 38 weeks...only 2 weeks early, but so tiny. I just couldn't accept "she's just small".

In the months prior to finding out Tessa's Congenital CMV diagnosis, I had been praying, asking God to finally put my fears to rest. Asking for His help for me to accept Tessa for exactly who she was and rest assured that her life was in His hands. Little did I know, the information to come, would reveal the profound application of those exact prayers.

~Whitney

Neurology Appointment Summary

Discussions from our neurology appointment on Monday:

Epilepsy
Severe to Profound Bilateral Sensorineural Hearing Loss
Cortical Visual Impairment (CVI) and
Cerebral Palsy (CP)

Obviously the epilepsy covers the seizures they believe Tessa had been having frequently until starting her on the medication, Trileptal, in the hospital. The only seizures we were ever aware of, were the two that she had in the hospital. Because of how drastic the improvement in her behavior was after starting the medication, they can only assume that she had been experiencing them since birth. We have had continued success with the medication and are very thankful for that!

The severe to profound bilateral sensorineural hearing loss is the diagnosis that we received from the audiologist after Tessa failed her hearing screening during our early August hospital stay. She has been fitted with the most powerful hearing aids on the market. The information I have read says that even with the most powerful hearing aids, she will likely rely heavily on lip-reading and/or sign language....but I say, God knows how incredibly important it is to us, as her parents, to be able to communicate with our sweet Tessa, so we say...hearing, speaking, signing, lip-reading...whatever it may be...it will be beautiful ~ because it will be the way that God allows us to share, with our precious daughter, her incredible purpose in this world!

Cortical Visual Impairment or CVI is the diagnosis for Tessa's vision difficulties. We have our follow-up vision appointment this next Wednesday afternoon to find out a bit more of what this might mean for Tessa. One thing I read online said that when a child with CVI needs to control her head, use her vision and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope. We say, we are committed to helping Tessa achieve her greatest potential in this area of her diagnosis! She has vision, she does see things and track things with her eyes....it may be overwhelming to her at times and be a bit more difficult for her....but just like anything else...it's not about the diagnosis, it's about our faith and our perseverence ~ and we got-that!

Cerebral Palsy or CP was discussed in more detail at our appointment Monday, than it had been before. It is anticipated that Tessa will deal with Spastic cerebral palsy. This refers to the increased tone, or tension, in a muscle. Normal muscles work in pairs. When one group contracts the other group relaxes, allowing free movement in the desired direction. Due to complications in brain-to-nerve-to-muscle communication, the normal ebb and flow of muscle tension is disrupted. Muscles affected by spastic cerebral palsy become active together and block effective movement. The doctor anticipates that we will begin to see signs of this in Tessa over the next few months. This is the area of diagnosis that we do not feel like we have had any experience in with Tessa so far...so we will begin watching and learning in order to be equipped at that point in time. We will also begin therapy in the next week or so, potentially twice a week, to address her motor delays and potentially the effects of the CP on her body. It is still very much an unknown to us ~ to everyone. There are so many types of CP and, with anything else, a range of severity...so to know how it will all end up affecting Tessa, will take time to determine and understand.

The most hopeful part of our discussion at Tessa's neruology appointment on Monday was the potential for Tessa to begin the process of rewiring her brain. We were told in the hospital that babies brains are incredibly resiliant...but we received more insight about this resiliency in our rewiring/remapping discussion with her neurologist. For example, we have been told that there is significant damage to the vision part of Tessa's brain, hence the CVI diagnosis...but what we don't know, is how Tessa could begin to remap where she processes what she sees, so that it bypasses the damaged part of her brain and begins processing through an undamaged part of her brain. Brilliant, absolutely brilliant! This beats the heck out of "We Don't Know"....this information presents Tessa with the opportunities of a lifetime! This gives us, as her parents, something to encourage her in and something to help us fight for, with her~! The potential here is HUGE! With a little encouragement and the strength God has given her, Tessa can begin (and I believe has already begun) to rewire! There is also the potential for Tessa to remap the focal point of her seizures...meaning no-more-seizures! It is a possibility...and I tell you what....between the possibilities considered by the doctor and our FAITH...Game-On!

It has taken me several days to compose this particular post. I have decided that it isn't as much about the daunting task of sitting down to write about the negative, but more that what the doctors have to say to us is not where we put our trust. We trust in our faith and we have confidence in our faith. I write from a very honest and true place in my heart, and while I understand that each and every diagnosis is important to understand in order to approach her therapy, what we believe is so much more important to us. It is conflicting to have to embrace the knowledge and information about Epilepsy, Hearing Loss, CVI and CP...when ultimately our journey with Tessa is one of faith and perseverence. But at the same time, we trust that God will provide us with the tools on our journey, to in fact, help us help Tessa, achieve her greatest potential in every aspect of her life! It is a responsibility we have been given and a responsibility we are committed to with every ounce of who we are!

I felt that it was very important to cover the points of discussion from our appointment on Monday, so that I am able to address each diagnosis throughout her journey, knowing I have presented them to each of you, here. Your encouragement is invaluable, and your prayers, our lifeline...and I do believe the specifics of our journey are important to share for that purpose.

Thank you for your patience as I found the time and the energy to share some specifics. Whether or not they are specifics for Tessa, well let's all just start praying for her rewiring skills and wait and see, right!

~Whitney

Home Sweet Home

They are HOME! Whitney called Lindsay and I this evening on her way home from the hospital. They had a good meeting with the doctor from the Children's Center this afternoon and together decided that it would be in Tessa's and Mommy's and Daddy's best interest for the time being to be home! They were so thankful,relieved, and enthusiastic about being able to take some time to rest and be a family together at home.

Please pray for them tonight as they rest and sleep in their own beds! We are praying that they experience a peace, security, and rest that only God can give!


Isaiah 32:18 My people will live in peaceful dwelling places, in secure homes, in undisturbed places of rest.

~Hillarie

These Four Walls...

I got a text from Whitney a little while ago. Please be praying for them as they prepare to transition from the hospital to The Children's Center. Whitney expressed to me that there are so many unknowns ahead for them and although the four walls of their hospital room have been a place of terrible tragedy and incredible sadness, what lies beyond them is filled with such uncertainty and fear.

Psalm 31: 1-3

In you, O LORD, I have taken refuge;
let me never be put to shame;
deliver me in your righteousness.

Turn your ear to me,
come quickly to my rescue;
be my rock of refuge,
a strong fortress to save me.

Since you are my rock and my fortress,
for the sake of your name lead and guide me.


~Hillarie

Hospital: Day 5

Monday, August 2nd was a long day at the hospital for Whitney, Darin, and Tessa. Hillarie and I left Oklahoma that morning with a long 8 or 9 hours in the car to cry, and pray, and cry some more as we anticipated hearing what new news they would be given. They woke up that morning knowing they would send Tessa into a day of more testing-MRI, Hearing Screening, and a visit from an eye specialist. She was sedated again that afternoon and taken into the MRI, leaving Whitney and Darin waiting for a couple of hours for her to return to them and then even a couple more hours after that to find out the results. The doctors met with them later in the day and informed them (in simplified terms) that the brain consists of "gray matter" on the outer layer and "white matter" in the center of the brain. Thoughts originate in the outer "gray matter" of the brain and travel down through the "white matter" then on down the spinal cord in order to initiate mobility and other instructions throughout her body. The MRI results showed all of the brain damage concentrated in the "white matter" area of her brain. The doctors are concerned that Tessa will have difficulty telling her limbs to move. The MRI also showed that Tessa's occipital lobe is damaged-this is the lobe which translates images that come from her eyes. Whitney and Darin were devastated by this news. The doctors at Baptist Medical have also been consulting with an infection specialist to learn as much as they can about the virus so that Whitney and Darin can be fully informed.

~Lindsay

A Letter from Whitney

We have had a fairly peaceful couple of days. Tessa has only had one minor seizure since the scary one she had Thursday night(that we are aware of). In a strange way it was encouraging to see, because it gave us a better idea of what the doctors have been telling us to watch for. She started seizure medicine on Friday night and as long as it is working for her, it will be what she'll be on for all her years to come. The only side effect is sleepiness, and so far hasn't been too bad. It has been amazing to get to know our baby girl...since she started the medicine we have seen a whole new side of our precious little angel! We have had more peaceful moments in the last 24 hours with her than we've had in her almost 4 months now with us. It is a blessing to have a baby that finally feels good enough to give us some incredibly special smiles !! We got pictures of them last night and I will share them soon.

Tomorrow will be a busy day. She will have an MRI done sometime tomorrow (don't know exactly when yet) and should know results within a few hours. We will finally know the results of the blood cultures from the blood work they did on Thursday. We will know the results of some urine analysis, which will tell us whether or not the virus is still active in her or not. Knowledge that will help us protect those that might come in contact with her that might not be CMV positive (scariest for pregnant women that don't know if they have ever been exposed to CMV or not- I was CMV negative which is why we are where we are today). Tessa's pediatrician came and visited us tonight and wanted us to know that he is doing his research on all this and has a few things he would like for them to test tomorrow as well. It's a lot of details, so for now I will leave it at that. He also would like them to repeat the hearing screening that was done at birth and also perform an eye exam. I swore to him that I just know Tessa can hear us..I've been singing to her since day one and I know she hears me :) Darin and I are preparing ourselves for a vision obstacle. I don't feel like she has ever really 'seen' Mommy or Daddy...but it's always been perfectly clear that she knows by our voices that we are near. We realize that her lack of vision will more than likely be only one of many obstacles to come, but we'll be taking a day at a time and trust that the Lord WILL provide for every moment along the way!

I don't know that any of the information that we learn tomorrow will change anything. The neurologist has said that the damage to the brain has already been done, it will just be more evident to us the more she grows.

I'm not sure I've covered everything I hoped, but I figured there might be lots more to share tomorrow :)
We are so incredibly blessed by, and thankful for, all the thoughts and prayers sent our way. It's like I told my sisters today: I guess we just know that God hand-picked these two precious kiddos just for us and we're here to make our God proud with the responsibility we've been given!

Thank you all for loving us, supporting us and joining us on this journey with our sweet Tessa Rayne.
-Whitney

To the Hospital

Last Thursday morning little Tessa woke up with a fever that caused Whitney and Darin to feel concerned enough to get Tessa in to see her pediatrician. Tessa had just finished a 10 day round of antibiotics the Sunday before that was treating a double ear infection. While at the doctor's office, the concern spread. Tessa's left ear was still infected and her lungs did not sound how he would have hoped. The pediatrician was very preoccupied with her unusual behavior, weak and strained cries, and overall flushed appearance. Tessa's doctor sent them to Baptist Medical Center immediately. The doctors were concerned that she might have a blood infection or menengitis, therefore admitted her to the Pediatric care unit and began blood work and performed a spinal tap. The spinal tap results were back within the hour and showed no evidence of menengitis, which was great news; however, it would take 72hours to get the blood cultures back before they could know any more. It was the beginning of days to come in the hospital.

Whitney's sisters got to Oklahoma from Texas about 11:30 Thursday night. It was a long day for everyone! Tessa had a strange episode(possible seizure) that evening that caused doctors enough concern to order a CT scan and EEG first thing Friday morning. Whitney and Darin only got about 3 hrs of sleep, so were tired and very ready to get a few answers on things.

Friday afternoon they received devastating news. Tessa has brain damage from a virus she got before birth. The virus is called CMV and it shows itself on the CT scan as calcium deposits on her brain. The doctors told Whitney and Darin that more than likely the 'colic' behaviors that they have described of Tessa over the first 3 months of her life have been seizures/or the result of seizures all along. The Congenital CMV condition was more than likely magnified at this moment because of the current infection she had and the overwhelming amount of stress she had been under from the tests that were performed earlier in the day Thursday. They made plans to do an MRI to determine the extent of the brain damage as was possible to tell for now. There is NO treatment for CMV, only treatment of the symptomatic seizures. There is a broad spectrum of how the brain damage will affect Tessa as she grows and only time will reveal the extent of the damage.

Whitney and Darin have felt lost, devastated, confused, angry and on their knees trying to find the strength to go through this.




(posted by Hillarie)