Bittersweet Reminders

Will: 1 week old/3 years old

I am up early before the household gets busy, the best time of day to drink a cup of coffee uninterrupted. I was on Facebook earlier and saw a reminder post from 3 years ago when Will was only a week old. The reminders are bittersweet, and they are frequent because I celebrated him every day. I still celebrate Will, but the grief of losing the healthy boy to this disabling diagnosis lingers. 

For me, there isn’t a solution to the sadness that rears its head, but there are a few strategies that I have found helpful. Grief isn’t something that passes through like a virus; it’s a little piece of heartache that hangs out in the background that becomes part of who you are moving forward. When it moves toward the front of the stage, and it will, it’s essential to be able to acknowledge it and give the attention it deserves. Some tears will fall, the pain in my chest lessens as the tide moves back out, and I know that grief will always be there because I love him so much. I will always feel sad for what we have lost to this disability. I will always want more for him. I will always let my heart feel the loss because it’s not healthy for me to focus on only the good and ignore my intermittent sadness. I have to be present with these feelings when they arise, attend to them, and then take a step forward. 

People who grieve find their way to move forward. Some people know they need to avoid certain situations that may trigger their feelings of loss. These same people may decline invitations to certain events like baby showers, funerals, or hospitals. It’s hard to imagine how you might change because of grief until you are there. 

Baricitinib: 1 year later

One year ago when we started the drug Baricitinib, Will wasn’t able to hold his head up for more than 3-5 seconds. He was often irritable, couldn’t tolerate being in the car, and struggling to gain weight. He was also having frequent “flares” in his condition. During the flare he would be miserable, have sleepless nights, and startling episodes that terrified him.

Within a few days of beginning the drug, we noticed Will’s appetite improved, he was more alert, and he was tolerating PT and OT much better. We noticed that his trunk control improved and his ability to hold his up his head was gaining over the next few weeks. One day in the evening, we were playing and Will started making stepping motions while I held him above the bed; like he was trying to walk. These improvements have continued and he feels better. He’s happy.

We had a few more episodes of flares: becoming irritable along with months of poor sleeping at night. The doctor increased his Baricitinib dose and that seemed to help. 

Over the past 6 months Will has gotten stronger, he’s trying to reach for things by extending his left arm. Also, the level of focus he displays when attending to a task is reassuring. He can activate a switch if it’s held in front of him. We use the switch for cause and effect exercises to enhance communication.

Over the last 3 months, Will has become more and more aware of his surroundings. He’s moving his body to look behind himself, following people with his eyes as they come into the room, and he’s more engaged than we have seen in 2 years. The latest trick, no crying in the car! Could this be possible? Have we gotten our life back with respect to diving to activities? Amazing!

Our one outstanding problem (besides him being completely disabled) is dystonia. The kid has some very strong tone and it inhibits his ability to stand in his AFOs. We went to see a doctor in Boston to see if he had any fresh ideas. Basically, they want to try more medication. He wanted to use more of the same medication he currently uses (gabapentin). While Boston Children’s Hospital seems like an exciting option, and the neurologist was very nice, it didn’t seem like he was going to put much effort into thinking outside the box. There was no hint of putting some feelers out to the multidisciplinary team to develop an indivialized approach for Will’s problem. He mentioned a referral to the physiatrist who could treat Will with Botox and possibly phenol, and an orthopedic surgeon who will give us some recommendations on what to do about Will’s hips. 

I feel like Will is in the best hands at CHOP, but we can’t afford to get all of his care there. The hotels, commercial flights, and displacement of our other children is taxing. We will likely utilize the orthopedic team at Boston since it’s closer. I have asked our pediatrician to initiate the referrals for the physiatrist and orthopedic surgeon at Boston Children’s Hospital, but we will not see the neurologist there unless there is some major reason to consult with him again.