Saturday, March 29, 2014

Hiding my crazy...

That's what I used to call it when Adam was first born. "It" being the process of trying my hardest to pull it together during the random moments through out the day where I was having an internal meltdown at a place or time when it was really not appropriate to let that happen. Sometimes it was a doctor's visit, sometimes it was just changing a diaper in the middle of the day with my daughter in the room...and sometimes, the crazy got out anyway.

I am thinking about this today because I did something this week that I have contemplated for the last 9 months. I requested and picked up all of Adam's medical records from his birth and hospitalization in the NICU, including his imaging. I decided to do this because during the week I was reading a research study that referenced outcomes based on very specific locations in the brain affected by stroke and I had to pull out one of the reports we were given at discharge to reference. Looking over what we had I realized that there may be instances in the future where we want his complete records, whether for our own information, changing doctors or participation in research, and I would much rather get them at our convenience (and for free since we're hospital employees) than scramble for them later. That being said I had a little hesitation about revisiting all of that information.

The first and last time I saw Adam's stroke on imaging he was less than a day old. The second before the doctor pulled up his CT scan on the screen was the very last second where I could think that maybe, somehow, someway there had been a mistake. Maybe it isn't as bad as he's making it sound, or maybe there is some other explaination. When I looked up, any doubt was gone. As much as I knew that I needed that visual confirmation in order to move forward, I was shocked. That image has lingered all this time and part of me was afraid of how it would feel to look at the real thing again. I waited a whole day (which seemed like a long time) before I started with the paper records. I read every page before I felt ready to pull out that disc. As I clicked through the images the pit that had been forming in my stomach started to go away. I found myself noticing things I had never thought to look for on a CT or MRA like Adam's little conehead, his tooth buds and his cute nose. I saw the stroke, but I saw everything else too. It really hit me how much this parallels my experience as Adam's mom. I see his stroke everyday, maybe I always will, but the more days that pass the better I get at seeing everything else too.

At the end of the day I am glad that I brought these records home. I don't know why, but it was important to me to face my fear of going back over it all. I've done it now. I've read through accounts of every seizure, every dose of medication, every test and feeding. I did it without slipping back into those moments myself. I'd like to think this time I'm not just "hiding my crazy", maybe I'm finally getting to a place where I can leave those memories where they belong, in our past. The records will go sit in the office now, to get dusty in a file cabinet and that's just fine by me. I'm walking away from today with a sense of pride to look at what Adam has already overcome in his short life and so much gratitude for the strength that God has given him.

Thursday, March 27, 2014

So far so good with the Benik

We've had a chance to try out Adam's new Benik splint and I'm happy to say it has been going quite well. Although he's always shown a tendency to keep his thumb in on the right more than left, he absolutely hates  any sort of hand over hand help or repositioning of either hand so I've just been forced to kind of let it play out. While we initially started using the Benik splint to help him when he's pinching small things, I experimented with putting it on during unstructured play. I'll put it on for about a half hour and just let him crawl around all over playing with whatever he likes. When I take it off I notice that he opens his hand much wider when he's crawling or reaching. I have also tried a couple of times putting it on while he's in the carseat, to keep him from just resting with his right hand in the "OK" position. We don't keep it on all the time because it does slightly restrict his motion for grasping and limits sensory input to the hand, but I'm hoping this limited use will help keep him comfortable with his thumb out so he can continue to develop strength in his hand using that postion.

Excited to steal some of his sister's toys

Open hand and reaching into a container which is still a challenge these days

Weightbearing on an open hand with thumb out
(note the trail of destruction!)
Poking with his right index finger!



Monday, March 17, 2014

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.