Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else -- is HAPPY.
The events leading up to the Fateful EEG on 11/25 are as vivid in my memory as the birth of my kids. Perhaps moreso. The nurse practitioner at the twins' pediatrician was the first to suggest a diagnosis of IS. She told me, after witnessing a cluster of spasms, that she wanted us to go to Children's for an EEG to just "rule out" IS. She told me IS, the papers she had about it, had language ("severe to profound mental retardation") that would be upsetting but that she jsut wanted to rule it out.
Of course, when I read the description -- I knew.
I called my mom & Todd and had them meet me at our house. My mom arrived first, and I broke down. Couldn't stand. Couldn't speak. Couldn't breathe. Sobs. HOW? How could my baby be facing such a disease? How could my perfect, beautiful, innocent baby girl, who hit all her milestones and was just...PERFECT...have epilepsy? A catastrophic epilepsy? How could a name so benign, Infantile Spasms be so horrific?
We were referred for an EEG which involved our ped faxing a request to Children's, then we got put into the queue. It can take up to two weeks just to get scheduled! That didn't sit so well with me. Fortunately I have some friends who were able to get us in sooner, and we had our fateful EEG the Friday following Thanksgiving, 11/25. I think we had about 10 days of waiting before the EEG.
Of course, in those 10 days I spent lots of time with Dr. Google. I talked with who would become our neurologist at the time about what we were looking for and what would happen should we see hypsarrhythmia on the EEG. Wanna know how to pronounce it? HIPS-uh-rith-MIA. I didn't know at the time either.
But still. I knew. I knew Lily had IS. She had all the classic symptoms. Regression (she stopped making eye contact, smiling, bearing weight on her legs), clusters of "jack-knife" seizures, occurring around sleep.
On the morning of the EEG, a whole slough of us went to Children's. Me, Todd, the twins. My parents. I think my brother was there too. Yes, yes, I'm sure he was. EEG 1st thing. I took Lily back and we met a super insensitive EEG tech. She's not there any more. She tried to talk to me about whether or not I had gone to Best Buy Black Friday oepning. Uh, NO. My FOUR MONTH OLD BABY maybe has seizures! You think I give a fuck about BLACK FRIDAY!?
She of course couldnt' tell us anything. We were given a pager, and we went to teh cafeteria. Where none of us ate. The pager buzzed.
We met wonderful Dr. Miller outside the EEG lab, but since we weren't actually in clinic there wasn't really anywhere private to go. He took us to a small waiting area up the hall where he told us that Lily's EEG did in fact show hypsarrhythmia, and she'd been diagnosed with Infantile Spasms. They'd preapred a room for us on so we could draw labs & start ACTH as soon as possible. He was warm, compassionate. Quiet. How do you deliver a diagnosis such as thsi to a family? He was wonderful. I wore a red sweater.
As we walked to our room, I went into my PTSD "state". I have a little PTSD as a result of my 1st pregnancy, with twins, before Hank & Lily. I had a late term miscarriage at 18 weeks. I was devastated and had to make decisions that no mother should ever have to make during her pregnancy, and as a result when i'm faced with overwhelming situations, I often detatch & shut down a bit.
I did shut down the day Lily was diagnosed.
I walked to our hospital room, but without feeling or presence. I was just blank.
Fortunately, my mama bear kicked in before too long and I was able to gain some strenght to get all my questions asked. They wanted us to stay in the hosptial for 3-4 days to learn how to adminster the ACTH (IM injections to the thigh), but since we'd gone through IVF and were very comfortable with needles & injections, they let us do the 1st one and then discharged us.
Can you see the sadness in our eyes? I can. I still catch glimpses of it in the mirror today. I see it in the eyes of my other IS mothers.
Todd gave the 1st shot. I couldn't do it. We also trained my dad to give some shots because there were some days Todd couldn't be there to do it. No daddy and no grandfather should have to inject such vile steroids into their baby girl. None.
Anyhow, the hospital took pity on us, or we were very lucky, and we had a double room to ourselves. Hank got to spend the night which was significant to me. I did not want the twins separated. I knew, even at four months, that these babies needed each other. Separating them was not an option for me. They didn't spend a night apart until they were nearly two.
During our 24 hour stay in the hospital, we met our attending neurologist who I knew would be awesome when he showed up because he had a Red Sox lanyard for his ID. While we ultimately changed neurologists when Lily proved to be a difficult case, he was one of the most gentle, compassionate, and involved neurologists we've had to date.
They told us to get hooked up with Little Red Schoolhouse, a birth to three center. Who knew there were such things? Little Red became an angel to us during our journey.
We had to go to the pediatrician 3x/week to get Lily's blood pressure checked. I had to text her stool 1x/week for blood. Lily was on ACTH, Zonegran, Prevacid, and Bactrim. She ate, at four months, an eight ounce bottle every two hours. she became so cushingoind that it pinched her little button nose. She was soo uncomfortable and unhappy.
She had about a week of seizure freedom. but the seizures returned. On Christmas Day, no less. And just that morning she had reached out & grasped a ball. Such a mixed day. I was devastated that the seizures came back. And I will never, EVER forget my Granno sitting with me on the couch, while I cried, with her arm around me telling me that I had to stay strong. That I couldn't let this set back break me. That Lily, and Hank, needed me to stay strong. This, from the strongest woman I've ever known. How I wish I had her strength to draw on today.
Of course, little did I know that this first round of ACTH would be the easier of the two. We did a 2nd round in the spring that was worse. WAY worse. She regressed to a newborn state. She couldn't hold her head up, could barely suckle a bottle. She didn't have the motor planning to nurse at the breast; she became solely bottle fed.
Fortunately, shortly after her 1st birthday, she began to develop again. By 20 months, she was walking.
Today, Lily walks, sits at the table to eat, feeds herself finger foods (still working on using a spoon!), drinks from a sippy cup, drinks from an open cup wiht assistance. She pulls us by the hand to indicate when she's hungry, points to what food she wants, uses pictures to communicate other desires. We're working on implementing a full PECS system.
She is in her 2nd year of devleopmental preschool, with a robust IEP and 1:1 aide. She sleeps in a big girl bed and can get in and out of it with ease.
She has autism.
Lily takes her medication on her own. We hold a tab in our hands, she picks it up with a perfect pincer grasp and puts it in her mouth and swallows it. She loves her pacifier. She can climb up into her Tripp Trapp high chair, and though she still needs teh seatbelt to keep her in place, she won't need it for long.
She can walk up stairs with assistance, but can't yet go down the steps. Unless she's sitting on her bottom. Then she loves to bump from one step to the next. She doesn't have the understanding to intentionally do it yet, she still requires full supervision.
She goes to Hippotherapy at Little Bit Riding Center once each week. She is a rock star on the horse.
She has ABA therapy three times each week, and goes to school four days each week. She rides the bus to school with her brother two of thosee days, and home three days. We begin the transition to Kindergarden in January.
She is strong. She is a fighter. She has tenacity like I've never seen. Perhaps it is just stubborness, like her mother. I suppose my worst trait may be her best.
Best of all, she is happy.
(photo by Michelle Enebo)