This is an update I did not expect to make. Today we received news we didn’t expect to hear. Today was an appointment we have been dreading for months and yet today turned out to be a milestone I believe we can all call a miracle.
Yesterday, March 14, 2017 Jude went in for an MRI as we all waited on the edge of our seats with our nerves running wild. I kissed his little face before they rolled his bed back to start the MRI and told myself “no matter what, God is good! And Jude will get through this.” I think we all told ourselves that. We prayed in the waiting room together for good results. Jude has already experienced so much in his little life that we never imagined our child would. And we have been given some pretty grim reports. And yet, Jude continues to fight, defy the odds and conquer.
Now back to the MRI. The process went smoothly and they were able to get the images we needed which was a major relief. But we thought the hard part wasn’t yet over for us.
Today we had the follow up appointment to look over the MRI results with Dr. Campbell (Jude’s Neurosurgeon) in Delaware. First before I jump into the results, let me give a little refresher as to what we have been seeing with Jude the past year and a half now.
Jude has always been a very happy little boy! Despite his challenges, he is always filled with so much joy and brings so much joy to us. However, over the past year or so things have become more challenging for him. He had been doing extremely well in therapy, he was thriving in many areas, he was gaining movement in all extremities, he was gaining head control, he was blowing through many milestones they said he wouldn’t and the list goes on.
Unfortunately, a little over a year and a half ago Jude had his first seizure on the way to the first Rhizokids conference we ever attended. It was terrifying and unfamiliar. We hoped this was a first and only but the opposite happened. The seizures kept happening and got worse. Along with the seizures, he started having a major decrease in movement, he became less cognitive and our sweet and happy Jude was very often worn out and exhausted due to the seizures taking a toll on his little body.
He had EEGs and other evaluations and his doctors began to believe that the symptoms we were seeing were due to an issue that has been frightening us and hanging over our heads for nearly his entire life. We’ve known since he was a newborn baby that he has spinal stenosis along with some other spinal abnormalities. He has had multiple MRI’s of his spine and they have told us that there was always a possibility that he would eventually need a spinal decompression surgery.
After seeing all of these changes with Jude, they thought it was time for another MRI. They strongly questioned if the symptoms indicated that his stenosis was worse and it was time for Jude to have decompression surgery.
Today when Dr. Campbell pulled up his MRI images from yesterday, my stomach turned. He had all of us gather around the computer to go over the results and let me tell ya, TOTAL SHOCK and pure joy was what we felt. Jude’s spinal column has opened up. The room has increased for his spinal cord by fifty percent! It went from a 3 in size to a 6. You guys, this is INCREDIBLE. The smiles on our faces were huge and I had chills down my spine. I feel as if a giant and painful weight has been lifted off my shoulders! Like the dreaded timer of “one day” has been silenced. We believe in prayer! And this is an answered prayer.
As far as the seizures go, we have seen a change for the better in the past three weeks. After having Jude on two different seizure medications that we were having no luck with, we decided to try an alternative treatment. We were hesitant as first but after extensive research, learning the THC levels were close to none and reading many amazing testimonials we decided to try CBD (cannabis oil) in hopes that it would help control his seizures. After starting this, we have seen a 50% decrease in seizure activity, he’s gaining movement back and he is much more active and cognitive. He now laughs and talks all the time again!
It seems as if the symptoms were all tied to his seizures. He’s on a very tiny dose of CBD oil and already we see amazing improvement. We plan to increase and see how much better it will get. I still can’t believe it!! His stenosis got better!
I just had to say that again. This is probably one of my most favorite updates I have ever made. Thank YOU for every single prayer and for always standing and believing with us for the best. Once again, our warrior has defied the odds and blown us all away.
He heard my cry. Psalm 40:1