Amid all of our internal emotional and spiritual struggles, Nathan was still having some problems of his own. Most notably, his head was still growing. We had hoped that the Lumbar Puncture would have served to keep the hole in the third ventricle open and draining, but that didn't appear to be the case as Nathan's head continued to expand.
The neurosurgeon recommended that we continue to monitor Nathan's head size an growth, so we continued to take our weekly trips to the pediatrician's office to get his head measured.
Remarkably, Nathan was actually coping really well with his ever-increasing head size. Where previously his eyes would be getting all freaky and he would be throwing up all over the place all the time, he was actually doing quite well. His eyes were staying normal and he was vomiting considerably less than the previous times he was having pressure issues inside his head due to the hydrocephalus. So we were really hopeful...if it wasn't for his head continually growing.
Even though Nathan was coping remarkably well with his situation, we weren't. Me in particular.
Because Nathan's head was continuing to grow, it was playing a big factor in delaying his development. Because it was so big and heavy in relation to the rest of him, he didn't have the strength to hold it up. So he couldn't crawl because he couldn't lift his head up. He couldn't hold it up to sit up. He was able to roll over at this point, but even that was a struggle for him sometimes.
It was also a struggle for us to see him so far behind developmentally. Especially when we would see other babies Nathan's age or younger sitting up, crawling, or even walking. It was hard to not be hurt or envious or even resentful of these other little kids and there normal-sized heads.
Additionally, I was also developing another, somewhat secret, fear. As Nathan was nearing 1 year old, his head shape was becoming more formed and less changeable. My ultimate fear was that his head would continue to get bigger and bigger and then "freeze" in some huge, unhuman shape and that he would either end up looking like "The Brain"
Or that guy from that cheesy superhero movie "Sky High"
Granted, these fears were highly irrational, especially since the neurosurgeon had given us the "maximum growth point" that he was willing to let Nathan get to before taking action. But it didn't help either when one of the little neighborhood girls came up to us after church services one week, took a look at Nathan and said "Your baby has a big head!!!" And all we could do was nod and agree.
But perhaps the hardest part was trying to explain to my family why Nathan's big head was such a big problem. For whatever reason, they just didn't seem to understand why his having a big head was such a big deal. No matter how many times I tried to explain it. The rebuttal was always, "Well, you have a big head."
"Yes, yes," I would reply. " I know I have a big head. But mine has stopped growing. Nathan's hasn't. And until we can get it to stop, it's going to be a big problem."
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