Remembering...

Many of you know the broad strokes of Kennedy's story & have journeyed with us at different points along the way. We've been so loved by a variety of people all at different stages, please take a moment and remember with us.

We went to the hospital a few days before Christmas almost 5 years ago, I laughed on the way and said "This is perfect.  We will have a baby and be home in time for Christmas!" We had no idea what we were about to encounter. Kennedy was delivered a few hours later with complications. Kennedy experienced oxygen deprivation and upon her December 21, 2012 arrival, she was having seizures and partially breathing. Her condition was very unstable and in an effort to give her the best care possible she was immediately transferred to DeVos Children’s Hospital. 

Ready for my first EMS ride. 

First days at Devos. Just Chilling.

Krystal holding Kennedy for the very first time.

The first line of treatment was the three day cooling protocol which is used to minimize brain damage. Christmas Day marked the end of the cooling protocol and we got to hold Kennedy for the very first time, as you can imagine this was a cherished Christmas gift.  

Grandma Deb

First time Daddy snuggles with Kennedy Christmas Day

The next morning she received an MRI. The result of the MRI was that Kennedy sustained severe and profound brain damage. Our stay at DeVos lasted 18 days and included a wide variety of treatments, specialists, and family adjustments. During those long days of waiting and hoping, God reminded us of Psalm 139 especially verse 16; "Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."  

The Neurologists and Specialists were very careful to say that with brain injuries in babies they had no idea how well Kennedy would do but that the best way to help her progress is through repetitive therapy. At six months, Kennedy's motor skills were significantly delayed and she was diagnosed with Cerebral Palsy. Cerebral Palsy is a condition marked by impaired muscle coordination typically caused by damage to the brain. 

Lots of visitors came to us and pray for Kennedy. 

Aunt Janelle

Grandma Mary

The day we got to take Kennedy home.

Meeting my brothers, Keegan and Kohen.

Seizure control was a concern and Kennedy was medicated as a preventative measure. At 8 months Kennedy had gone the entire time we were home without a single seizure, so the doctors weaned her from her anti-seizure medication.  Then shortly after Kennedy's first birthday she experienced a severe seizure. We rushed her to the local Emergency Room and the doctors could not get the seizure to stop. We stood nearby as a medical team struggled to stabilize her and eventually was forced to recessitate Kennedy.  Amidst the chaos in the room, I (Krystal) realized that everything was out of my control. I sat down, watched, and prayed, "God you are not a God of chaos and fear but a God of peace, hope and love. We have done our best to be faithful with Kennedy for one short year, we promise to be faithful for as many more days or years as you will give us." And in that instant His peace rushed over me and we took comfort in knowing He was and is in control. In the moments following, the seizure stopped and Kennedy was once again transferred via ambulance to DeVos for follow up care.  This time it was a 3 day stay, concluding with adjustments to her seizure control medicine and an emergency pack in case an episode like that ever happened again. We praise God today that Kennedy only experienced this one episode and has been seizure free since. 

Her progress has been gradual and God is teaching us what it means to be patient. Kennedy is a happy, smiley, lovable little girl. She loves to sing, play animal match, and play with any toy that makes noise or has music. Now she is able to call us all by name, knows her animals and colors, counts to 20 and likes to recite her favorite books. We continue to rejoice with each minor bit of progress she makes. I cried the day (at age 3) Kennedy finally said "la, la" her own version of "ma, ma." I was beginning to wonder if I would ever hear those words. We praise God that she has finally been released from Neurology, and from regular meetings with a dietitian. We and she fought hard to learn how to eat without a feeding tube. That part of our journey was one of persistence, to say the least. She continues to be on a smoothie based diet but does enjoy some solid foods. We continue to await the day that Kennedy will be able to sit on her own and will take her first steps. 

Kennedy has attended Ken-O-Sha, a special education pre-school, for the past two years. We have appreciated her teachers and the progress she continues to make. In the fall of 2016, we had Kennedy's cognitive testing done. We were curious to see what the results would be. Kennedy, now 4 years old, is considered SXI which stands for severely multiply impaired. This doesn't sound good but she scored higher in some areas giving us some thoughts on what her future schooling might be. 

Kennedy working on holding her own spoon.

Kennedy's first AFOs.

Go Blue!

General special education services fall into three general tiers. Tier one intervention is for students who are primarily in a regular class room in a regular school and see a special education teacher for some accommodations for certain subjects. Tier two intervention is a specialized classroom in a regular school where students are with a special education teacher and might go out to a class like music with regular education students. And tier three intervention is a special education school with all special education students. That testing gave us insight that Kennedy was likely to be cognitively ready for tier two but physically able (because of her motor skills) for tier three. This understanding has lead us to recognizing Kennedy's need for more intensive physical therapy. 

Family Pictures Fall 2016
Kohen (age 5), Kirk, Kennedy (age 4), Krystal, Keegan (age 7)

 We are blessed to have the resource of the Conductive Learning Center right here in Grand Rapids. The Conductive Learning Center is an intensive, multi-disciplinary approach to education, training and development for individual with Cerebral Palsy and other motor challenges. Conductive Education integrates medical knowledge with educational methods to enable the individual to learn how to gain control over his or her movements. Children are taught to see themselves as active and self-reliant participants in the world and ultimately live as independently as possible.

The first and most important thing we are asking for is your prayers, as everything we need for Kennedy is in God's capable hands. We are also asking for your financial support if, and only if, God lays it on your heart to support us in this way. We are so grateful for the funding we have already received through grants, scholarships and gifts. This amount will be enough to send Kennedy for the first two and 1/2 months. The Conductive Learning Center is very expensive and we are looking for friends and family who are willing and able to partner with us to send Kennedy to the CLC for the 2017-18 school year. The projected cost for this is $19,000, so far we have $4,800. Please prayerfully consider a gift. 

We have no doubt that this experience will be life-changing for Kennedy and we are excited to share it with you. Each bit of progress reminds us that God is good and that God is near. We have comfort in knowing that Kennedy will be fully restored and fully healed. We don't know Gods timing in all of this and it may be in eternity that we see this to its fullness but in the meantime we will be faithful to give Kennedy the best opportunities for growth and progress. We believe this is the next best step for Kennedy. 

Summer 2017
Photos compliments of  www.jamielynn-photography.com