Our youngest child is medically complicated. He was born with weak lungs and when he was two months old got hit with multiple illnesses at once, and because it was during the pandemic, there was not room to hospitalize him until it got bad; really bad. He was also a foster child at this point which added additional complications with regard to medical decisions. He was in the hospital just under a month. He’s officially diagnosed with Asthma and low immune function. When he gets sick it takes him at least twice as long to recover as the rest of the family and he’s prone to pneumonia. He has been hospitalized more than most three year olds.

Below is a “short” narrative of our medical journey over the last 8 months. As adoptive parents there a few things that you may or may not be educated in prior to the adoption. What adoption looks like long term is not something anyone prepared us for. No one tells you that if they are exposed to drugs and alcohol in utero this might make them prone to adverse reactions to medications. We knew they might be developmentally or emotionally delayed. We did not expect medical complications. 

I get that there is no guarantee of what to expect with any child. Seriously, I understand, I’m not trying to one up you. 

With adoption you have to know, it may be even more of a wild card in this way; with medical and mental health it can be complicated to talk to doctors about it because you don’t necessarily have family history or diagnoses. There’s so much guess work involved I often feel lost, powerless, and/or incompetent by no fault of my own. 

The fall of 2024 he began having seizures. We hoped the seizures would stop after he was no longer sick (he had walking pneumonia). They didn’t. We ended up with a  myriad of appointments that December and into the new year. An EEG (electroecephalogram, or brain scan), MRI, Neurology, ENT (Ear, nose, and throat), and further out a sleep study. 

The EEG was done immediately. The scan is usually done over a 12-24 hour period. With our youngest they were able to confirm the seizures within two hours. 

When the doctor came in to speak with us about it he went over the next steps and medication options. The first medicine we tried was Keppra. The Neurologist said the biggest side effect with Keppra is moodiness/anger. I remember putting my hand to my temple in exhaustion and asking, “How am I supposed to tell if my three year old is “crankier” than his normal amount of cranky? I mean he’s three and mildly cranky on the best of days.” The doctor laughed out loud, “I’ve NEVER had a parent ask me that”. I don’t know why I was the first person to ask this question as it seemed very basic. 

I told him, “I mean obviously he has some sort of baseline. My worry is that in a couple of weeks if I call and say my three year old is cranky you won’t believe me.”  He promised me that if we saw his “crankiness” increase beyond baseline that we could easily change the medication as there were lots of other options.  Within a week, we could tell.  He switched medications and the current one is working for him.

Next was the MRI - it was an intense appointment for everyone. My three year old had been in hospitals and doctors offices enough to know that if you have to wear hospital clothes it’s either not going to be a pleasant visit, OR that he’d be there for a couple of days, OR both. 

We tried to hype up the clothes because they had given us tiny scrubs. So we told him that, “we were playing dress up so he could match the doctor”. He seemed ok with the shirt and we thought maybe we got lucky. When we went to take his shoes off he flipped his lid.  He knew if the shoes were coming off this was NOT just dress up. 

My partner and I tried de-escalating him but when you’re three, and you’ve been traumatized medically in your short life, it’s a tough sell. So we had to wrangle him into the pants and carry him kicking and screaming to the prep table for anesthesia.

I was weeping by the time he was calmed by the anesthesia. Then the doctors and my partner had to de-escalate me.  

Even writing this I’m tearing up. It felt like I was betraying him. My children trust me. I am their safe space, their comfort when they get hurt. NOT the person hurting them. I knew that I was not “hurting” him intentionally but it didn’t feel good. I cried and paced most of time he was in the MRI.

The neurology appointment was easy as it was telehealth. They said it looked like he was having focal seizures and we made a game plan with the doctors for moving forward.

Meeting with the ENT was short. They took half a look inside his mouth and said his tonsils were huge! They asked us if anyone had told us this before? His Pulmonologist had said that his tonsils looked big but didn’t seem concerned. 

We ended up adding a tonsillectomy to the list of medical appointments. Yay...

This seems to be our youngest’s norm. He’s been easier emotionally and behaviorally than my other children but he has just as many doctor appointments as my other kids have therapy. 

I don’t know if eventually you just get used to the challenges. I continue to be surprised because I hope that at some point they may all improve. I want to believe that eventually life will become a little easier for these kids. They’ve been through so much already I worry how these trials will affect them long term. 

I want them to grow up and believe they can have a happy and fulfilling life. I will have to just keep reminding them to take it one day at a time. Some days it may be all we can do and that’s ok.