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Heartbroken: When We Found Out Jett's Diagnosis

This is an excerpt from an old blog that I used to maintain. It contains my feelings and emotion in real time as we found out Jett's diagnosis of Pontocerebellar Hypoplasia as well as his prognosis.


March 12, 2012

I'm not sure where to begin...in fact I am sick to my stomach as I write this. Our sweet, little Jett man is still sick. He has been to more doctors appointments than I have been to in my entire life. He is so brave. To make a long story short, we received a THIRD opinion from a neurologist on Jett's condition. We met with Dr. Francis Filloux, the head of the neurology department, at Primary Children's Hospital last week. Our worst fears were confirmed. Dr. Filloux diagnosed Jett with Pontocerebellar Hypoplasia. You can read about the condition here.

 It basically means that Jett's underdeveloped brain stem and cerebellum affect his entire body. This includes functions critical for life, including respiration and digestion. Besides not being able to walk, children diagnosed with this condition do not hit major milestones like sitting, standing, or even talking. The worst part, is that most infants do not make it past the age of two. There are only a couple kids who have made it to childhood.

Cody and I have known this prognosis for some time now, but have waited to tell our family and friends until we knew that this was a definite diagnosis. It is obviously a tender time for us right now. The world feels as though it is going in slow motion. We have all been through a roller coaster of emotions these past four months. Unfortunately, I know that this isn't even the worst of it. Times are definitely going to get harder before they become easier.

What I (we) are feeling right now: *  Our hearts are broken...not just broken. Shattered. *  Angry....why us?? *  Scared. The nights are the worst time for me. My imagination and thoughts seem to be amplified. I have a constant pit in my stomach. Every time Jett coughs and chokes (which occurs many times throughout the night), I feel like this could be it. *  Exhausted *  Helpless at times. I wish I could just take Jett's pain away.

 Yet, at the same time, I (we) feel: *  Comforted. *  Grateful for our families who have stepped in and helped watch Jett. He requires around the clock care and they have been there to save us when we need sleep or a break. Also grateful to those who have written us notes of encouragement, dropped food off at our house, and those who have said prayers in our behalf. *  Full of LOVE for this amazing little spirit

Jett before his cleft lip surgery in March 2012

 We have definitely learned (in all of this) that we are not the ones in control. Heavenly Father has a divine purpose for Jett. His time on this earth was meant to be short. I feel so privileged that Jett chose Cody and I to be his parents. I am going to do my best to take care of him the best I know how. I am not looking forward to the day when Jett leaves us. I don't like the unknown and the range of time that the doctors have given us really doesn't make things any easier. It could happen next week or it could happen in ten years. A lot of people have asked us what they can do to help. Please just pray for Jett's COMFORT and for us to be strong. Also...talk to us. We have found that by talking about our situation really helps us to sort out our emotions. Cody and I are still the same fun-loving people as we were before. We still find humor in life. In fact, the other day the doctor was testing Jett's reflexes. He used his little hammer and hit Jett's knee. The second he did it, Jett farted really loud. We couldn't stop laughing. That same appointment was also when we found out what Jett's true diagnosis was. I think Jett is trying to keep us laughing so that we don't completely break down. We LOVE him so much and are so thankful for the tough lessons that he has taught us about life and love.

Jett's Blessing Day

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