What a month it has been! Since my last update, several life-altering family events have filled our every waking moment. I know it will not be possible to do them all justice, but I want to record here some of the vivid memories that have been made, and little by little catch us up. Herein are the first couple.
The first major event of the month of May technically occurred in April (the 25th in fact). It was a Wednesday, the last class of the year for our kids that were in RE/RCIA and for Paul who taught the parent formation class. So he and they were at church, while I was at home with Jacob, Megan, and the three youngest (Alyssa, Elyany and Ruben). I was in my room when I heard the tinkle of shattering glass in the kitchen, where Jacob was. He’d dropped a cup, and sounded like he was in the process of picking it up, when I heard another crash, much louder and more forceful. Then I heard a terrible groaning like I’ve never heard before. I looked across the house and through the kitchen I didn’t see Jacob. I ran in there, and found him on the floor convulsing, eyes rolled back, his face in a pool of blood. The under-sink cupboard door was broken off its hinges and lying on the floor beside him in pieces.
I yelled for Megan, she ran to help me, and then it was a blur of activity as I tried to find my phone, couldn’t, and was in a panic. Alyssa was terrific. She’s one cool cucumber. She ran to get Megan her phone, patted Jacob on the head, and then went and kept the younger two busy in the living room and out of the way. Thank God for Megan, who was able to call 911 and tell them everything they needed to know. She also called Paul at church. He immediately left class, then had to round up all the kids from their three different classrooms, and raced home as fast as he could. While I kept the little ones busy in the bedroom, Megan talked to the emergency personnel and made sure they had all the info they needed. It was a bustle of activity for sure! Jacob was semi-responsive, but in too much pain to be able to get up from the floor so he had to be lifted onto the stretcher. Paul arrived home just as they were pulling away to go the the hospital. Megan rode with Jacob in the ambulance and Paul followed in his car.
Once there, he underwent a great many tests – cat scans and x-rays etc., and all that took time, but the first thing they found was that he had 2 fractured vertebrae. I thought it had happened when he fell against the open cupboard door, but later learned that was not so. In the next couple of days tests confirmed: Jacob has epilepsy, and the fractures were actually caused by the seizure! I had no idea the force the body exerts when convulsing could be that powerful. I also learned (which I maybe knew but had forgotten) that being autistic raises the likelihood of also being diagnosed with epilepsy (and of course, it is hereditary, which significantly increases the chances).
This pic is from Friday, the first time Jake was able to stand up after the seizure. He has been wearing the brace except during sleep in the 4 weeks since then, and was just given the ok to leave it off except during “activity”. (Not sure what “activity” means, since he’s still restricted from bending, lifting or twisting.) So he’s relishing walking gingerly around the house brace-free (and with uncharacteristically great posture!) right now!
As for the epilepsy, we are so thankful we know now, and he was in a relatively safe place when his seizure happened. Since his dad has epilepsy too, he was able to talk to the neurologists and explain his history. He had his first seizure at almost the same age, and although it took about three years to find the right medication, they have been under control since then. The docs are confident that the same medicine that works for Paul will work for Jake. So we are praying for good results and no more seizures now that he’s begun his regimen.
A couple of weeks after the seizure, Jacob had his first neurologist appointment. On the same day, by coincidence, I also had an appointment for Ruben with the Southwest Autism Research & Resource Center. His results from a recent pediatric developmental screening qualified him for an evaluation for autism. I was so thankful for the opportunity to get him tested in this research program, since the testing is normally thousands of dollars and therefore very difficult to afford.
In the month between when I received the paperwork and the appointment day, I managed to fill out and then lose all the paperwork. So I had to arrive an extra half hour early to get it all filled out again. In a way, it was beneficial since Ruben had made a couple of steps forward in that span of time and I thought it would register in his testing.
Turned out not to be relevant at all. I have not yet received a written report, but in the brief summary I got at the end of the testing, it looks like Ruben has an expressive communication delay. He understands fairly well what he hears, but he does not have words, and he does not exhibit a typical desire to mimic and learn words. He has a handful of words – Mama, Dada, Bahbah (bottle), Ber-Ber (his one special bear), Gaga (he uses this for any animal and a few other things), Na-na (Natalie), and MMa (Oma). A few other names we can identify are Ehya (Ellie), Lahdah (Lyssa) and Zhuhduh (Jordan, Xavier and Jacob).
We will be taking him back in one year for a followup evaluation, but we’re to call them between now and then if he does not make any more gains in speech or if he regresses from where he is now. So between now and then, we watch and love and wait and love and read to him and sing to him, and love, love, love. He is not hard to love.
Look for Part II coming soon…