UPDATE

Wow. I know they say time flies when you are having fun; but I am here to argue time flies when you are incredibly busy! It’s hard to believe that we have already been home for three weeks. The hospital feels like yesterday and like forever ago at the same time. Three weeks and we still have a lot to figure out; schedules and routines are still to be made. We had two visits back to Children’s this past week, one for Brock’s repeat hearing test, and the other for a consult with the neurosurgery department after his MRI last Monday. He passed his hearing test with flying colors, although because he had to sleep through the procedure, he was very upset with me on the way up there and waiting for our appointment time. We had been told that we would receive results over the phone after our MRI on Monday, but we received a call on Tuesday asking us to come into the neurosurgeon office on Thursday. It was definitely a difficult few days as we began talking about what a consult with neurosurgery COULD mean. I felt like I was going to hyperventilate when I walked into the hospital on Wednesday for his hearing appointment thinking about the possibility of living back in the hospital for any amount of time. The neurosurgeon decided that the surgery could be put off until he shows us he really needs a shunt (which would mean the size of the ventricles are putting pressure on his brain). She does firmly believe that the surgery will be needed at some point. We were instructed to see our pediatrician every 2 weeks to measure his head circumference and discuss his behavior, and then to repeat the MRI scan in three months. The results were more than we could have asked for- more time with our little boy at home. More time to pray over our sweet boy with a full head of hair that God would choose to show himself as the ultimate healer.

A typical day at our house involves rolling out of bed in survival mode, followed by cereal, Brock’s meds (7 different meds in the morning, a handful of vitamins and meds throughout the day, and three more at night), a few phone calls, play time (or appointment), lunch time, scanning and filing bills, more phone calls or another appointment, dinner, bath, and bedtime. Add feeding Brock every two hours and that’s about it! It sounds so easy and efficient typed out that way, but I constantly feel like I am riding a bike while balancing plates on my head. We have a lot of crashes to say the least. Another thing…they kinda shove you out of the hospital to navigate a lot of this new, unknown territory by yourself. We are STILL working to set up physical, occupational, and speech therapy. That means feeding is still very, very difficult most days and we are still going at it alone. It also means that he is using the equivalent of what a preemie nipple looks like, and I have no clue how to get any more nipples and they are designed to use for a one time use. We’ve been rewashing and reusing for three weeks now. It means we wash 12 syringes a day- but probably need to order 100 more on amazon- or wherever you order syringes. Again, stuff to figure out. I spend a lot of time reading and researching things about brain development, chiropractic care, and essential oils. (Maybe I should google where to get more syringes or bottle nipples) I will try anything to avoid a brain surgery that would affect Brock for the rest of his life- it would mean a yearly visit with a neurosurgeon and a rapid sequence MRI. It would mean hitting at least our medical deductible every year for the rest of his life! That is something I pray we can avoid.

We are slowly entering back into society- but with extreme caution. I had a friend give us an amazing starter set of essential oils and we have been using them like crazy to help boost our immune systems, help with allergies, etc. We currently put frankincense oil on Brock every 2 hours- on the top of his skull and the bottoms of his feet. There is a lot of testimonial evidence that this has helped with seizure activity. This every two hour “ritual” has become such a blessing to me. I cannot do it without thinking about the fact that the oil was a gift to Jesus. ::Let that sink in:: It is my biggest prayer that Brock’s life will be a testament to the faithfulness of God and His healing power.

Today, I cried tears over my sweet baby boy, who no longer looks like a newborn, and who was coo-ing the daylights out of me. While he may struggle meeting many milestones that are ahead of him, he made eye contact, smiled, and cooed at Bradley and I many times today- and for that, I celebrate! In our world of constant ups and downs, this is certainly a very large up! I wish you all could see the video I posted on facebook- this site doesn’t have a place to post videos. If you are friends with us on facebook, I promise it will make you smile.

He is my living miracle. Thank you for following our journey- for praying for him- for praying for us. May you be blessed through his story.

Taryn