Updated: May 27, 2020
Thank you for sharing Luke’s story with us! Can you tell us about your family and first learning you were pregnant? Valentines Day 2009 I came down the steps with a surprise for my husband, Tommy which was the confirmation I was pregnant. He was very surprised, and the kids were very excited. We asked them not to say anything until we had confirmation and our sweet daughter, Emma couldn’t keep a secret, so she told the neighbors I had something in my eye and was going to the doctor. Later that night the neighbor asked me how my eye was, confused by the question I just said good. I then asked the kids, and Emma confessed that she just couldn’t contain her excitement she had to say something!
Briefly what were a few highs and lows of your pregnancy and how long did it last? The lowest point was when the radiologist suggested abortion at the ultrasound the same day, we heard the news that Luke would be born with Spina Bifida. It took a few weeks to adjust to the news and try not to overreact to what may or may not be. We would not know until he was born. The highest point was seeing Luke make his entrance into the world and prove the doctors wrong! No club feet, everything flows as it should, and he is one of the friendliest kids you’ll meet. He is full of joy, laughter and never meets a stranger. My husband’s highest point was hearing that he is a boy.
Share what you are comfortable with about the NICU experience for your baby. It was amazing! The best nurses were on hand taking care of our sweet baby. He was the biggest baby in the NICU unit and never cried. The nurses said he was the best baby, and they set timers to feed him through the night because he was such a good baby. They even took my numerous calls in the middle of the night as I was pumping just so I could see what was happening with Luke.
How long did Luke spend in the NICU what was the hardest part of your time there? We spent 13 days watching and waiting. Leaving him nightly was very difficult because we missed him deeply. Another difficult thing was seeing the preemie babies in the NICU have no one come visit.
What was the biggest challenge that you had to face for Luke since being home? There are few challenges: Making everything handicap accessible. We have sold our house, rented until we could find a house, bought a house and still waiting on modifications to the bathroom. Financial stability being another. After having Luke, it took us four years before qualifying for CapC which provided us with Medicaid that supplements insurance. However, there are still items that are not covered that are very helpful for Luke such as music therapy. Insurance also limits the number of therapy sessions per year. It requires a parent to keep fighting for what your child needs, as well as a good therapist that find grants and coverage for things not covered by insurance or Medicaid.
When did you know that Luke would need extra therapies? Within a week of delivery, the early intervention program contacted us about therapies that Luke will need. It was overwhelming to understand all the information being sent our way.
What therapies have really helped him? There are many that have helped. Speech has helped him form words and make sentences as well as eating. Hippo has helped him balance and develop his core strength. Music which helps him with speech and hand eye coordination.
How did you hear about Bee Mighty and what made you apply? The music therapist told us about the fund once we determined Medicaid was no longer covering the cost. Luke loves music so we knew we would do whatever it took to find the funds.
What does a typical day with Luke look like now? On Monday, Wednesday and Friday he is up no later than 10 am. We potty him using his potty chair first thing in the morning. Once we help him dress then he rolls up the hall for his medicine and Pedisure. He begins his homeschool work before his play time. Once he completes his homeschool then he can play. As he completes his school he takes breaks for working on his breathing treatments, exercises, music therapy, switching from wheelchair to stander and eats lunch. Once he is done with his school and therapy then he plays with his IPAD, reads a book, plays a board game or challenges family to a WII game. At some point in the day he will shower. On Tuesdays, he attends school from 9 to 3. On Thursdays, he attends therapy most of the afternoon
Any advice you would give another family going through the process? Anything that really helped you get through the experience? Never give up on your child. If you’re not happy with your doctor, then find a new one. Fight the insurance companies, and don’t give up. If you are declined, then fight them on the denial. Its important to stay organized, whether you use a file cabinet or a notebook with tabs for each doctor. When items are declined then you have the documentation to provide.
We have a large support group of church, family and friends that walk this journey with us. I steer clear of the negative talkers that don’t understand why God gifted them with a child with unique needs. Luke is a blessing and gift from God. Luke enables us to share our story with others and encourage others going through the same experience.