Joseph's Journey

My name is Melissa and I have a 10 month old son who is the light of my life, my ultimate love, and the coolest little boy ever. He entered this world with a bang, being born after I had a very sudden/very severe onset of pre-ecclampsia, that turned full blown ecclampsia, followed by a grand mal seizure on the OR table as they prepped me for an emergency c-section. Joseph Mason Andrews was born on September 22, 2014 at 31 weeks. He had a grade 3 and a grade 4 IVH (intraventricular hemorrhage, aka brain bleed), an enlarged heart with tears in the heart muscle, an unknown infection, and fungal balls on his kidneys. He was retaining fluid at an alarming rate, and nobody knew why. He developed hydrocephalus due to the bleeds. At exactly 2 weeks old  (on the Monday from Hell) I was told I needed to transfer him to Shands for brain surgery, that he likely wouldn't make it through because his heart wasn't strong enough...or end his care. God did some showing off at this point. The next morning after telling God I NEEDED Him to show me, I was practically bombarded with nurses telling me it wasn't time to end it. The following week he was transferred to Wolfson in Jacksonville. He spent a total of 44 days in the NICU (equally split between TMH and Wolfson), needed no surgery, and his heart is fine! For the record, his heart was never MEDICALLY treated. It's returned to normal size and there are no tears. I've asked God every day of this little boy's life 'please God, just hold him in your hands' - and God has done exactly that. 

In December it was discovered he had a bilateral inguinal hernia, for which he had surgery in February. His surgeon is married to the nurse practioner in the NICU that stepped in on the Monday from Hell. God was lookin' out as always.

In May he started PT for increased muscle tone and torticollis. In July he started OT. His PT is amazing and got RAVE reviews from one of his nurses from the NICU that I bonded with and trust so much. Again, small world and God's lookin' out.

The last week of July he started having these forceful "jerks" to his left side, he'd get this terrified look on his face, and cry. He'd do it 6-8 times, lasting a minute or two total and then he was fine, and this would happen maybe once a day. August 3rd he had one of these episodes at PT. His physical therapist said it looked like seizure activity. I got video of it and called his pediatrician when we got home. I also called his neurologist that afternoon. Tuesday morning he had a pedi appt and Wednesday morning he had an EEG scheduled at his neurologist's office. After reviewing the EEG and watching approximately 2 seconds of the video I had, Dr Ayala diagnosed Joseph with Infantile Spasms. IS is a form of epilepsy. They admitted him to the hospital about an hour later.  Thursday he had another EEG, an MRI, and an LP (spinal tap) Friday he started treatment of Acthar injections that will last 10-11 weeks. Ideally the steroids will end the spasms and he won't have seizures ever again, but there's a good chance he will have seizures afterward. The steroids can have a big effect on his immune system, mood/irritability, and weight gain among other things.

Last year was expensive, this year has already been expensive, and it's going to be an expensive rest of the year. I'm admitting that we need help. If you are willing and able to donate, I would be eternally grateful. Any funds given will go to Joseph's medical needs.