9 months

The weeks and months seem to be flying by. Adam turned 9 months old last week and I am still somewhat in disbelief. I find myself just stepping back to watch him play, explore and interact with our family... I have no idea where the time has gone. What happened to the little bundle we brought home last June? I am trying my best to savor every last cuddle, but the moments just keep ticking by.

These days Adam is crawling all over and doing his best to get his hands on everything I'd rather him not. He loves all his big sister's toys and thoroughly enjoys "wrestling" with her. He's pulling himself to stand on the furniture and is starting to try to take steps along it. The day he turned 9 months he crawled up five stairs by himself for the first time.

Overall, Adam continues to use his right hand very well, but does demonstrate some atypical patterns and shows a preference for using his left hand. He is able to poke with his index finger and has good active supination (turning his palm up) on both sides. He has started to consistently use an inferior pincer grasp on the left, meaning he is able to pick up pieces of food between the pads of his thumb and index finger, but when he tries on the right his thumb sometimes stays tucked in. We've noticed this as well when he crawls on certain surfaces, like carpet as opposed to the hardwood, or when the hand is at rest.

Hanging out in the cart you can see how he holds his right index finger and thumb together

Good overhead reaching! 

Adam has done so well with his occupational therapy that we have decreased the frequency to once a month, or as needed. Over the last month I have continued to implement the strategies his therapist and I had developed to encourage Adam to use good quality of motion with his right arm, but since he has recently started the new skill of trying to pinch I was excited for our visit today. His therapist trialed a small neoprene Benik thumb splint to help him keep his thumb out while he's trying to pick up small objects. Crazily he fit into the size brace for a 2 year old with only a little trimming to the thumb length! It was the perfect amount of support to keep him from tucking his thumb towards his palm when he tries to pinch and he was able to pick up the pieces of food perfectly. He also showed better hand placement while crawling, so we're excited to start incorporating that into some feeding and play time.

Impatiently waiting for lunch with his new splint

It's odd because most of the time I feel so far removed from those first days when Adam was first diagnosed. Our days are filled with the routine of little ones - endless cycles of naps, diapers, feedings, playtime and laundry...the list could go on and on. It seems surreal that this baby I am caring for could have had such a major neurological event. I look at him going about his baby business, completely unaware that anything is out of the norm, and wish I could do the same.

One issue I have had is accepting the fact that just because Adam had a stroke doesn't mean he gets a free pass on all the other stuff that goes along with being a baby. He has had colds, fevers, thrown up and started teething. Although not fun, these things are just par for the course in the first year. My challenge has been separating each event with his stroke. Now I don't mean this to sound like I freak out every time he sneezes, but I will freely admit I give him Tylenol for a 99.5 fever at bedtime that I never would have medicated for Audrey. Even though I have been reassured he is no more at risk for a febrile seizure than any other child, I worry. The one time he threw up my mind went racing to whether he had any sign of a change in neurological status before I finally accepted that he just had an upset stomach. I watch him relentlessly for any sign that his seizure activity is returning and an unexpected startle or twitch is enough to put me on edge.

I just haven't quite figured out how to let go of the fear that the moment is coming when things will start going wrong. I am thankful for every day that passes without a seizure, with more vocalization and better use of his right hand, but part of me struggles with the idea that there is no guarantee things will continue on this course. In one sense I recognize that this isn't rational, none of us have any guarantee on what our future holds, but knowing the list of things Adam is at "increased risk" to experience gives me something quite specific to be worried about.

My goal is to find some balance - being sensitive to his deficits so that I can provide him with every opportunity to progress, without giving in to unproductive worrying. I have a feeling he will be an excellent role model for me, as children often are, and if I just allow myself to join him in taking each moment as it comes we'll both do just fine no matter what comes our way.