Wednesday, January 26, 2011


We feel so deeply grateful for the love and support that was expressed to our family by our extended family members and close friends when we needed it the most during Ben's illness. We understand that many of our family members and friends took a real personal investment in our son, his recovery, and our family and we feel so humbled to have been the subject of so many thoughts and prayers. Now, after the passage of some time, we continue to receive sincere questions from all those people who reached out to us, wanting to know how Ben is doing now. There are also many people who don't know what to say, or what to ask, but are curious about Ben's health. As we have had the priviledge of witnessing countless miracles take place before our eyes, we want to spread our experience, our gratitude, and our love for our Savior with all of those who have been affected by our son's experience. However, as this experience is deeply personal and very close to our hearts, there are certain things we wish to keep private. So, in order to provide our support system with an accurate update and to record and celebrate the great accomplishments that Ben has made, I have answered a few Frequently Asked Questions:

Q. "How did Ben get meningitis?"
A. Who knows?! My purpose in answering these questions is to be open and informative, but I have to say, I find this question irritating. By asking where he caught the germ, are you looking to place blame? Ben was diagnosed with strep pnemonia bacterial meningitis. Like any other bacteria, it can be found on shopping cart handles, doctors' offices, in your home, or just passed from person to person. If you've ever had strep throat, then you've had the exact same bacteria! For some completely random and unknown reason, Ben picked up the strep pnemonia bacteria from an unknown source. Rather than the bacteria localizing in his throat or sinus the way that it would affect most people, it likely travelled through his blood stream where it infected the thin covering of his brain (the "meneges") and spinal cord.

Q. "My neice/cousin/neighbor had menigitis and she is just fine--why was Ben's case so severe?"
A. There are many strains of bacteria that cause meningitis, some are more severe than others. Strep Pnemonia is a particularly dangerous strain that can cause serious complications. The type of bacteria, coupled with Ben's age at the time of only five-weeks-old, and some serious medical discrepancies, resulted in a very serious illness.

Q. "I know Ben doesn't have meningitis anymore, so does that mean he isn't sick anymore?
A. Ben does not have meningitis, he doesn't have any communicable disease, and he is not sick anymore. As the result of his illness, Ben suffered some very serious complications, including: CVST (cerebral sinus venous thrombosis), hydrocephalus, epilepsy, dsyphasia, mild unilateral hearing loss, nystagmus, gaze palsy, name a just few. It is these after-affects that we are now treating.

Q. "Is Ben still on medication?"
A. Per the EEG performed earlier this month, we received the very encouraging news that Ben's brain waves are now calm enough to taper off his anti-seizure medication. As Ben's medication is very sedative and harmful to his development, we are very pleased to discontinue this medication, his last prescription. However, the medication is also addictive and, obviously, he will be at risk for seizures over the next few months. In the past, Ben's seizures manifested with apnea, so Ben sleeps with a oxygen saturation monitor to make sure that, should he have a seizure, he doesn't stop breathing. We would hope that we would be able to discontinue his monitor in the next few months also.

Q. "How is Ben's development coming along?"
A. Miraculously well. When you consider the fact that at one point we were told by his doctors that Ben may be blind, deaf, have profound disabilities, feel too sensitive to appreciate touch and contact, and may require feeding and breathing support, Ben is definately exceeding expectations. As Ben has suffered some serious setbacks, we are aggressively pursuing rehabilitative therapy to (pray, pray, pray) reach a full recovery. At this time, Ben is delayed in some of his gross motor skills and visual ability (as would be expected, all things considered), but we see him make new learnings and discoveries EVERY SINGLE DAY. Ben receives physcical therapy, occupational therapy, aquatic therapy, speech therapy, feeding therapy, and vision therapy seven times per week. Although it has required a major shift in our priorities to provide Ben with daily therapy, we have seen great results so we feel encouraged to continue with his regimen. As Ben is still so very young, there is no way to tell what his abilities will be. While we are constantly watching his development with a critical eye, we feel very hopeful and encouraged with the remarkable progress that has been made in such a short amount of time. With Ben's hardwork, courage, and perseverance, our determination, and the Lord's will, we expect great things for Ben.

Q. "How do you, as his mother, handle this trial?"
A. Ben is an absolute joy. I have been ridiculously blessed to have received Ben as my son and he makes every minute of every day more meaningful. Ben is not a trial--the way that our family must adjust to a new situation is a trial. As with any trial, there are low points. Unfortunately, our trial is not one that we will 'check-off' and complete. Rather, our trial is a journey that we will walk for the rest of our lives. Fortunately, I have the knowledge that I don't walk this path alone. My greatest friend and Savior, Jesus Christ, leads me on this path and has provided me with a perfect partner with whom to share my journey. He has also given me wonderful parents, parents-in-law, family, and friends who give us much needed support. Additionally, I know that through this trial, our family will gain strength, faith, compassion, charity, and patience--qualities that will enable us to ultimately attain salvation through Christ.

Q. "Is there anything I can do to help?"
A. We very much appreciate your love, support, and concern for our family. Ben's progress has been phenomenal, but there is still such a long, long way to go--we continue to call on our friends and family to remember our son in prayer. We know that the Lord hears and answers prayers and we have personally felt the comfort and strength of the many prayers offered on our behalf. Thank you! Also, this experience has opened up our eyes to the suffering and needs of so many families like ours in similar circumstances and we encourage you to look for opportunities to serve and love them.

I know that the Lord works in mysterious ways, often using His children as instruments in His hands to bring about His work. I would welcome any opportunity to be of further assistance in discussing our experience with anyone interested.


Mindy said...

Thanks for the update and information. I agree that you guys are lucky to have a special boy like Ben, but I also think that he is lucky to have you too.

Megan and Keli'i said...

Wow, thank you so much for this, Court.

What an amazing little guy. I pray for you and your family often and am amazed at Ben's progress, your continual faith and strength and example, and I really appreciate your candidness in this post.

You brought me to tears.

dangrover said...

Thank you for this information. I am so amazed by you! You are an amazing mother. I will always keep Ben in my prayers. Much Love, Linsey

melissa said...

You and Aaron are amazing parents, and ben is as lucky to have you as you are to have him. I think these FAQ were an excellent idea, I may have to steal them for Brodys caring bridge page. You may want to check out it is a site specifically for medical trials and people who want to follow Bens progress subscribe to your journal and are updated everytime you update the site. It has aleviated alot of the questions and helps people to feel informed. Anyways just a thought.

greatbon said...

Thank you for sharing and answering so many questions. I believe we chose trials before we came to earth. You chose the blessing of Ben because of what he will do for your family and for every single person who knows him. We pray always.

Lou Ellen said...

Thanks for the update. Love seeing all the pictures of the boys. I'm so glad at the progress that Ben has made. Yeah for miracles~
with love from Texas