(click on the picture to see the entire thing)[...]

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. [...]

Brock's prayer warriors- we have an appointment at 9:30 am tomorrow with a neurosurgeon at Children's to discuss the results of his MRI. We were originally told we would receive results over the phone and then got a call asking us to come in, so we suspect they want to revisit the shunt idea. Please be on your knees that this isn't the case! And if it is their recommendation, we have time to get things in order, get a second opinion, find the perfect surgeon, and maybe get another MRI to verify that it is really needed right now. We are working hard with a chiropractor to allow the ventricles to begin draining again and would like to have some time to see if this will work before performing a surgery that will affect him for the rest of his life. I hyperventilated just walking into the hospital today for his audiology appointment- which he passed with flying colors! Please also pray for peace for Brad and I for whatever bumps are ahead. We have had several rough nights lately and I assume tonight will be no different...but prayers for a good nights rest and health are also appreciated.[...]

Brock’s 5 S’s: Swaddling, Side/Stomach Position, Shushing Sounds, Swinging, Sucking[...]

Today’s accomplishments included getting a medical binder in order and updated for Brock, watching infant massage techniques for babies (since massage therapy isn’t covered by insurance), as well as lots of snuggles and even some outdoor time for all of us. It’s been a long time since I’ve spent any time outside unless walking the sky bridge or in a parking garage count. It was a beautiful day! We said goodbye to my sister, so Brad and I are officially on our own now. Unfortunately, the kids and I (Taryn) won’t be heading to church in the morning because we just aren’t comfortable with the risk of exposing any of us to something during this outbreak season. [...]

This was shared with me tonight. I feel like it's very fitting while we mourn over what we anticipated life would look like for us- and for Brock. Regardless of what the rest of Brock's life looks like, the present is filled with doctor check-ups, MRI scans, repeated hearing tests, and therapy appointments.

WELCOME TO HOLLAND

by
Emily Perl Kingsley[...]

It was inevitable- the whole part where we have to pay for the past 4 weeks. The first bill came today and the emotions that I thought would follow as I opened the envelope were not even present. The reason opening the bill was not accompanied by sheer panic, and wondering, “how in the world are we going to pay this?” is because you all have significantly alleviated that stress for us. We have been gifted enough to cover our in-network out-of-pocket limit for this past hospital stay- which happened to cover two years. I am blown away at the ways God has provided through the generosity of people who know us and people we have never met. Brock’s medication for this month was $148.16. He will likely need those medications and yearly (or more often) checkups for the rest of his life. It is overwhelming…but so are the ways we have already been blessed.[...]

Today there were tears. Happy tears. Tears of answered prayers. Brock had his first pediatrician visit today since leaving the hospital. We have nothing against the pediatrician we are using for the girls, but wanted someone who came recommended, had some experience with brain injuries and would help us be proactive instead of simply reacting once we see delays. The pediatrician, who we had never met previously, walked into the room and said, “God’s got big plans for your little dude!” He listened to our story, our concerns, and was extremely helpful in giving us tips and resources. It was also brought to our attention that Brock had a severe tongue tie. Not a single speech therapist, lactation consultant, or doctor looked into his mouth the entire time we discussed his feeding issues at the hospital. So incredibly thankful for a doctor who is not willing to let brain damage be the answer to every issue he has. While cutting the tie did not solve every problem, it has helped. We left the appointment with several more people to contact and invite on this journey with us. We go back in two weeks for his two month visit…hard to believe![...]

We get to take our little super hero home today!!

~ Brad and Taryn[...]

Brock’s MRI is scheduled for tomorrow morning. It is very exciting to think that we could be getting released from the hospital in less than 12 hours. On the other hand, tomorrow could take a different route…but I am not even letting my mind go there currently. All of Brock’s medication has been called into an outside pharmacy and is currently waiting for us to pick up. We have names and numbers of people we could potentially need to contact. We’ve been over many if/then scenarios. Our pediatrician has encouraged us to be extremely cautious, but to live and enjoy life- to go to church, to not change our schedules as to never get Brock out in public. However, it is flu and RSV season and either are guaranteed to land us back here.[...]