Tuesday was a big enough day that it took today to recover enough that I could write about it. Nothing is wrong! (That's what I have to say immediately every time I call my family at an undesignated time now. Simultaneously sad and funny.) It was just wild in a way-too-many-things-for-one-day kind of way.
First, we went to see Dr. Awesome for our neurology checkup. It was a great appointment, per usual. He spent tons of time with us answering each and every one of the questions on our extensive (and TYPED) list and, though we talked about some tough things (which is sort of the nature of the beast at the neurologist's office), we felt encouraged overall. We have decided to start weaning the Clonazepam, which is very exciting. This is an antiepileptic and sedating drug that Collin has been on since July. It was meant as a backup for his other drugs and to provide some 'wiggle room' during drug transitions; but, now that Sabril is working so well, it's no longer needed. (High five to Sabril.) It will be a slow wean - 6 weeks at least - because it is a habit forming drug, but we're just happy to be on our way. Also because Sabril is working so well (side hug to Sabril), Collin hasn't had a seizure that we've seen in over 3 weeks. Consequently, Dr. Awesome ordered an EEG to see if Collin's brainwaves are starting to normalize yet (stopping the seizures is only half of the goal). So, after our appointment, Collin and I walked over to Children's Hospital, worked our way through the familiar and lengthy Outpatient Registration process, and headed to NeuroDiagnostics to get the test run. While we were waiting, Collin pooped in the chair, which has apparently become a favorite hobby of his. When we finally got all settled in to the clean armchair, with Collin all snuggled up in my arms and my feet propped up and the room so cozy and dark, he and I both fell dead asleep and enjoyed a blissful nap for the duration of the EEG. I joked with the technician that I wouldn't object to an EEG everyday at 3:00. We should get the results tomorrow.
We made it home from the hospital about half an hour before all of Collin's therapists and service coordinator were scheduled to show up for our big six-month plan meeting. When you are in an Early Intervention program (a state-sponsored program that provides help to children under the age of three with developmental delays - what an uncharacteristically brilliant use of taxpayer money!), you set goals for a six-month period of time and when that 'plan' is over, you meet up again to reevaluate the progress that has been made and set your goals for the next six months. It was interesting thinking about our first meeting, when we thought that Collin's only challenge was his difficulty eating without aspirating. We only had a speech therapist to help with the feeding and a family therapist to help us deal with the stress and struggle of our situation; our goals basically covered getting Collin off the g-tube and started breastfeeding. So much has happened since then. With the Infantile Spasms diagnosis, we've had to let go of some goals and dreams and we've struggled constantly against the negative side effects of medicines (cheek smooch to Sabril for not presenting any yet). It could have been a really tough meeting. But I sat there with these six incredible women (we've added a therapist or two since the beginning!) who all love Collin so much and listened to them sharing stories with each other about their sessions with him and how excited they are about little things he's doing and I just glowed inside. When I started my own therapy back in April, my killer therapist shared with me her own experiences in the Early Intervention program with her son and expressed the way in which the therapists provide not just strategies, but also support and empowerment. I had no clue what she was talking about at the time, but as we sat around the table drinking tea and laughing and dreaming about what Collin could be doing in six months, it really hit home.
After the meeting, I woke Collin up from his nap to feed him his midday meal. We are currently feeding him pureed meat twice a day to boost his protein intake and have been having a little trouble pushing it through the tube no matter how much we dilute it or how hard we push. I mixed some almost-liquified chicken in with his breastmilk and was talking to him sweetly while I pushed firmly on the feeding syringe. Apparently, the syringe was not seated in the extension tube well enough to withstand my brute strength, because the tube exploded from the end of the syringe and pureed chicken and breastmilk came rocketing out. I mean, think fire hose. Of chunky, funky milk. It sprayed mostly on the side of Collin's face, but it hit with such force that it ricocheted everywhere and splattered half of the couch, all of Collin's Boppy, every inch of his body, all of my clothes and my hair and face. I had pushed most of the syringe out before I even knew what had happened. Collin looked at me through the one lens of his glasses that wasn't totally covered with smelly, sticky chickenmilk and I could swear he rolled his eyes. I gave him a stern talk about respecting his mother and then we went upstairs to strip down, scrape off the quickly cementing chickencrud, and take an afternoon bath.
Luckily, we ended the day with a leisurely dinner with dear friends and time to decompress with the help of good food, good listeners, and some great laughs - a surefire combination. Now we're looking forward to a few days of calm. Fingers crossed.