Fritz and I went to his Neurology appointment on August 29th. We met with Dr. Bieber. Adam was, unfortunately, unable to attend, because he runs his own Ortho clinic during that time. He is growing fantastically 60% for weight and 70% for height (he was in the 10-15% range when he was born). His muscle tone looks fantastic and he is hitting all his milestones right on time. His head has also stopped jumping in growth and is now following a nice curve!
Going to these appointments have a physical effect on me. I honestly just start dripping sweat (TMI, I know) and get so nervous. Even though I knew everything was going to be okay, there is always so much new information to take in and even more, decisions to make, we are always given so many options to think about.
While we knew that Fritz didn't have Hydrocephalus as they thought he might due to rapid head growth, we also learned that he was completely misdiagnosed while in utero and when he was in the ISCN, and at each follow-up ultrasound. I'm so glad we did the MRI because we found out what was being screened on the ultrasounds wasn't extra space at all, but a really huge Arachnoid Cyst. We knew the cyst was there, after the MRI, just not ow LARGE it was. While it sounds scary by definition we truly do not have to be too worried, and for that we are thankful. In all honesty, Dr. Bieber told us to consider this a win. Taking Dandy-Walker and Mega Cisterna Magna off the table should be a relief. We aren't 100% in the clear, but our boy is 99.9% perfect and we shouldn't expect any developmental delays or dissabilities.
"In most cases, arachnoid cysts are present at birth (congenital), but usually, do not cause any symptoms (asymptomatic) throughout an individual’s life." (NORD)
Fritz does have extra fluid around his brain, largely due to his head size, 99.93% (oh man), and his ventricles do look a little a little enlarged (likely from the cyst keeping fluid from draining as quickly as it could or should).
We will have a neuro follow-up when Fritz is a year old. At that time we will decide if we want to have the cyst drained and when it would be appropriate to do so. Our team is against putting a shunt in, due to the risk of infection and that was a huge relief. There is a procedure called Endoscopic cyst fenestration where the cyst can be easily drained without opening the skull or inserting a shunt. I asked our nureologist if there was any sense of urgency to get a neurosurgey consult and his answer "nope!".
Right now Adam and I are so thankful to be able to focus on our healthy and happy baby. We are one step closer to being able to formally close the door on this chapter and it is a relief.