I can't tell you the number of times the thought, "I really need to sit down and write a Caring Bridge update," has gone through my head over the past few months. It's not that I didn't have good intentions of getting it done, but I guess the time and my drive to write just haven't aligned themselves until now. With that said, I hope you all had a wonderful Christmas and end to 2020, and I hope 2021 has started off on the right foot for each of you as well.

The last post I put on here was back in September. Boy has Brent gone through a lot of changes since then! Read on to get a good overview of what's been going on in the Hokanson household since the beginning of October. I apologize in advance for the lengthiness... Just be thankful I didn't include all of the details! ;)

October:
Of the past four months, October was probably the least "lively" in terms of appointments, medical updates, and changes for Brent. Looking back at our records, he only had five days of appointments that month, most of them being routine things. We saw his cardiology doctors, pediatrician, checked his liver labs again, and saw a dietician. From those appointments, we found that some of his liver enzymes were elevated again since coming off of his liver medication, his heart continued to do well, and his growth was pretty good.

We did meet with a neurologist for the first time at the end of October to talk through some things we felt like were going on with Brent. The soft spot on his head was very small, so we were concerned it may have been closing too early. Brent's head circumference was also below the growth chart, so he fell under the category of having Microcephaly. After meeting with the neurologist, she felt it would be a good idea to order both an MRI and CT scan. The MRI would show how his brain has been developing so far, and the CT scan would show how the bones in his skull were growing and forming. Both were scheduled for November.

Outside of the medical world, in October Brent showed us his first smiles, took his first trip to Illinois, and had his first overnight without us since the NICU. His evenings continued to be draining for me with his colic-like symptoms, but his days were quite good. We continued to adjust to our new world as parents, and Eric spent most of his waking hours with harvest when he wasn't at work.

November:
This was a big month for us! Brent saw his cardiology doctors again, and they felt like we could move his medication to two times a day instead of three. What a positive difference that made in our lives! His liver follow-up labs showed that the enzymes were still elevated, so they scheduled an ultrasound (which came back normal) and decided to schedule another round of labs in December. We also visited the NICU follow-up clinic where we saw several doctors, nurses, and therapists to see how Brent was progressing. That was the first time I really felt like there were areas that Brent was falling behind developmentally, but we knew that was likely to be the case given his birth story. We also had Brent's eyes checked for the first time with Ophthalmology in Rochester. It was too soon to fully understand what was going on with his vision, but they could tell something was a little off.

Brent's MRI was scheduled the week before Thanksgiving. He was such a trooper with the sedation, fasting, and everything else that went into it! The results came back and showed that he had a small spot in his brain that had been bleeding (likely at some point shortly after birth), and it also showed us a couple of other minor things, but overall it painted a fairly positive picture! The CT scan he got at the end of the month showed that his soft spot was, in fact, very small, but it was still open! His other sutures were also mostly forming as they should have, which we were very relieved to see.

In terms of Brent's personality, November was really the month where he started to take off! He was showing more smiles, he giggled for the first time, and his evenings were finally getting better. After moving to the nursery in the later part of October, Brent started to consistently sleep through the night for 10 or more hours in November as well! I felt like I was finally starting to be confident as a mom, and we were all very thankful when harvest wrapped up before Thanksgiving. :)

December:
After an eventful November, we anxiously awaited our first Christmas with a baby in December. Brent had a few more routine appointments including a cardiology follow-up, his 6-month appointment, a meeting with genetics, more liver labs, and a hearing test. All brought pretty good news! His liver enzymes were slowly coming down, his heart was responding well to the new medication schedule, and he passed his hearing screen. Brent's only big development update in December was that he started to hold objects and bring them to his mouth, which was very exciting! We were still concerned about his vision, but things were mostly looking up!

However, the end of December ended up taking an unexpected turn. Starting around Christmas Eve, Brent began to have rough evenings again, seemed unable to stay awake for longer than an hour or so, and he started having what we were calling his "startle episodes." I could tell something wasn't quite right but hoped it was just teething or a growth spurt or him getting over all the Christmas excitement. We said goodbye to 2020 with a few great friends (Brent spent it with Grandpa and Grandma), and we looked forward to starting fresh in 2021.

January:
As it turns out, Brent's "startle episodes" and other things associated with them weren't just a typical baby phase. After several conversations with his pediatrician, we scheduled an EEG (electroencephalogram) and several labs for metabolic disorders. The labs came back normal, but the EEG revealed Brent was having Infantile Spasms, a type of seizure. We had an appointment with his neurologist the next day, and he began a 29-day treatment for the spasms right away. Prednisone was the steroid he was put on as treatment for the spasms, and they added two other medications as well to help with the side effects.

To put it lightly, Brent had a VERY difficult time adjusting to the steroid. It was so hard watching him be so uncomfortable and knowing that what we were giving him was causing him to be that way, but we knew it was a necessary thing to get rid of his spasms. After about four days, his body seemed to start adjusting much better and his spasms had actually stopped! His appetite improved drastically, his mood was much more pleasant, and we could tell that the steroid was doing its job. His increased appetite did cause him to stop sleeping through the night for the time being, but we are hopeful that will go back to normal once he is off the steroid!

We did a 24-hour EEG at their Epilepsy Monitoring Unit to see how things were doing at the end of January, and it showed that his spasms had stopped completely! We felt very grateful for the good news. :) The next day, we had a follow-up appointment with Ophthalmology to see how his eyes were doing. The news wasn't quite what we had hoped. The doctor told us that Brent's eyes were just fine, but the area of his brain that's in charge of vision wasn't doing its job correctly. He determined that he is "legally blind," which means that he can see light, color, and some basic shape outlines, but his vision won't ever be clear like it is for you and me. He referred us to a specialist for the beginning of February.

February:
This month started off with the specialist Ophthalmology appointment. He was able to tell us that Brent has PVL (Periventricular Leukomalacia), which is a type of brain injury. This has caused him to not be able to see clearly. The good news is that it's likely to heal and improve some over time. The bad news is that it's very unlikely that his vision will improve to the point of being able to read a book, drive a car, and do other things like that. We will continue to see this doctor every four months for a while to monitor Brent's progress, so we can only wait and pray that things improve. 

Brent is on the homerun stretch of his steroid, getting it only once a day now and being done this Thursday (Feb. 11)! We are so thankful it has continued to keep the spasms away, and we are trusting that God will continue taking care of Brent in the months to come. :) The doctors told us that there's an equal chance that the spasms could stay away and nothing would come back, the spasms would come back, or a different seizure disorder would form instead. I suppose time will tell which of those options we will end up with.

Though we've been dealing with quite the medical journey, Brent has started to show more substantial developmental milestones! He's finally rolled over (back to belly) all on his own a couple of times, he is more comfortable in an assisted seated position than before, he is getting better at holding/maneuvering objects, and he has slowly started with baby foods from a spoon. Brent now weighs over 17 pounds, is more than 26 inches long, is transitioning to size 3 diapers, and is now wearing mostly 9 and 12 month clothes. As he weans off the steroid, his jolly personality and big smiles have also come back, and boy do we soak them all in! :) 

All in all, Brent seems to be getting back on the right track again. I would like to think that these will be the last of his medical struggles, but I'm sure I would be kidding myself. Your continued support and prayers mean more to us than you will ever realize, but please know they do not go unnoticed! We are just so thankful for the miracle God has put in our care over these past 7 months, and we are going to do everything in our power to ensure Brent lives out the purpose that God has created him for. :)