Checking Off Milestones

In all of his recent evaluations, Nicholas has been determined to be about eight months behind in his physical development. He's maintained a steady eight months behind in development level, which is great because it means, while he's behind his "peers", he is staying on his own track and isn't falling behind.

He is a few months behind in cognitive development, and is actually age appropriate, or even advanced, in social skills (which anyone who knows him will tell you - our giant flirt).

So, even though he's currently eighteen months old, he's technically considered seventeen months old developmentally since he was born a month early, and he's measuring at nine to ten months in his motor skills development level.

As I've mentioned before, Nicholas isn't crawling or walking yet, and we honestly don't know when that will happen. We're fairly confident that it will - he's proven himself to be a singularly determined individual, but it will be late. Many people with hydrocephalus, especially at the severity that Nicholas had, will never walk, so we're grateful that he likely will, even if late.

He's been sitting up on his own for some time now, as long as someone helps him into a seated position. His core strength has grown that he now sits for the entirety of a taekwondo class (while playing with the other babies), and it doesn't exhaust him. Early Saturday morning, I was up with all three kids. Zachary was watching cartoons, Emily was playing, and Nicholas was practicing getting into his crawl position. Suddenly Zachary says, "Mom! Look at Nicholas!" I looked over and Nicholas was sitting up next to the entertainment center, trying to get the DVD player. I said, "Oh wow, that was nice of you to sit him up, Zach!" Zachary said, "Mom, I didn't!" I asked him if he was being honest, did he really not help Nicholas at all? Zachary swore that he hadn't helped Nicholas up. Which left the conclusion that Nicholas had gotten himself into a sitting position for the first time ever. We watched him throughout the morning and it never happened again.

Until nap. We went to get him after his nap and he was sitting up in the crib. We knew at that point that he had to have done it himself. That night when we went in to feed him his 9 p.m. feed, we found him sitting up in the crib instead of sleeping, laughing and incredibly proud of himself. Since then, we've found him in a sitting position several times, though we've never actually seen him put himself there.

This little guy continues to amaze us, and we are so proud to be able to watch this journey of his!

Hydrocephalus Awareness Month Post 3: Side Effects

The problem with hydrocephalus is that it affects people on such an individual level that there's no true list of side effects from it. There are things that are common amongst individuals affected with hydrocephalus, but people can range from completely high functioning (you'd never know they had hydrocephalus) to total brain damage. It all depends on so many factors, including how early the hydrocephalus was detected, what type of hydrocephalus they have, and what the body did before treatment intervened.

Some of the more common side effects are:

Vision problems, headaches, precocious (or early) puberty, seizures, poor hand/eye coordination, learning disabilities including nonverbal learning disabilities, difficulty understanding complex and abstract concepts, difficulties retrieving stored information, and spatial/perceptual disorders.

Because there's such a large range of side effects, hydrocephalus affects individuals all in a completely different way and on a totally individual level. Since there is no way to talk about all the different ways that hydrocephalus affects every person, I am going to tell you how hydrocephalus affects Nicholas.

The first reassuring thing we were ever told about Nicholas was when we met with his neurosurgeon while I was still pregnant with him. Being told that there's something wrong with your child's brain is terrifying. Meeting with a doctor who will do brain surgery on your child within days of being born? Even scarier. We literally had to trust this doctor with our child's life and we hadn't even met this child yet. Our heads were still spinning as we tried to research what hydrocephalus even was and here we were meeting with a man who would go inside this baby's head. He looked at the MRI and ultrasounds and told us that he was pleased to see something. Nicholas had a giant head. We were so confused. That was a good thing? The doctor told us it was a great thing. Because Nicholas's head was so large, it meant that his brain was growing along with his ventricles. When the head was developmentally normal and the ventricles are large, it means the ventricles are growing into the areas where the brain is and that typically means more brain damage than we would likely see in Nicholas.

I can't tell you how lucky we were that his head expanded. He has some issues because of the hydro, I'm not going to lie. But he's one of the lucky ones. The further we venture into the hydrocephalus community, the more we realize just how lucky this kid is. Obviously we don't know yet if he will have a learning disability or some sort of social disorder due to the hydrocephalus, but as of this moment, his issues are small and manageable.

Nicholas's side effects include a g-tube because of a weak swallow reflex. Weak. Not non-existent. That is a big distinction. He's already showing improvement with lots of speech therapy. The neurosurgery and pediatric team believe the weak swallow reflex is a result of some brain damage due to the hydrocephalus. That was so hard to hear. But he's improving. He had a swallow study on Monday and while he didn't "pass" (there's not really a pass/fail according to the speech therapist that administered it), we were told it was his strongest swallow study yet. That's in only 8 months of having a g-tube and therapy!

Nicholas is being stimulated by electric pulses (it's not painful - he actually falls asleep to this!) to help make his muscles in his neck stronger. This will hopefully strengthen his swallow.

Nicholas is also physically delayed. He has been rolling from back to tummy for about a month and just recently gained enough strength to roll from tummy to back. He will scoot a little bit while he's on his tummy using his legs to push. He just started to push his legs up when you hold him upright with his legs on the floor (i.e. he's starting to try to "stand" while you hold him) and he can hold his head up but not for extended periods of time. All of this is being addressed in occupational and physical therapy. We were told by our neurosurgeon at one time that it's not like it will be on his college application when he walked, and we agree with that. If he doesn't start walking until he's 2, he doesn't. It's not the end of the world.

Occupational therapy = playtime! Fun!

Cognitively, Nicholas appears to be on track, if not slightly advanced in some areas. He tracks with his eyes when you put something of interest in front of him. He reaches for toys and passes them back and forth between his hands. He rolls to his side to grab toys. He babbles and laughs (most often at something Zachary does - this kid sure adores his big brother) and smiles. He's a complete sweetheart and everyone who meets him falls in love.