Yes, children really do have strokes. There are different kinds of strokes, you can read about them here. E had a stroke on that Monday in April 2015, which caused the seizure. But we didn’t know that yet. I’ll start where my last post left off. Here’s the first part of the story.
We settled into our room at Akron Children’s. E was sleeping off the meds, and the extreme exhaustion that comes from having a seizure. J and I sat and tried to digest all that had happened. I felt numb, and in disbelief that this was happening to us. We called family members and told them what we knew (which wasn’t much). There’s so much waiting at hospitals, things take on a life of their own. It’s no one’s fault really, it’s just how things are. Doctors and nurses came and went, introducing themselves, and asking questions. It’s safe to say that we’ve never scrutinized any days as much as the days leading up to this one. We wracked our brains for memories of signs of anything that was outside the scope of normalcy. The facts were as follows: E had a cold and runny nose. The night before he and O were playing on the floor in the living room when E stumbled, followed by some crying. Soon after, he stumbled again and he cried again. It was enough to catch our attention, and caused a little concern because we talked about it after the kids were in bed. Well, the stumbles were odd but he had a cold and runny nose, so maybe an ear infection was making itself known. That would explain the equilibrium issue. Yes, we decided without more thoughts on the matter, it must be an ear infection.
Each doctor wrote notes furiously as we recalled our memories. They did blood work and a spinal tap to rule out the most pressing medical issues. They began administering a broad spectrum antibiotic as well. The neurologists were thinking febrile seizures. This sent me into a world of guilt. How could I miss a fever? I had checked his temperature the night before. “Don’t feel guilty,” they said.
By that evening, E was beginning to wake up but was still very groggy. You know, it’s funny because I can’t remember if we ate dinner that evening. I don’t remember some basic things, but others are crystal clear. J and I were ecstatic that E recognized us, and seemed happy. His smile drooped on the right side. It must be after-effects of the medication we decided. My parents and brother stopped in that evening. E adores my brother and cheered up considerably for him, even trying to move some. We noticed his right arm and leg didn’t seem to move as easily as the left. “My, he looks like an old person who had a stroke!” one of us said. “But surely not…” we added, shrugging.
That night we held E all night. Before the seizure he usually sucked his two middle fingers on his right hand. He worked hard during his sleep to get his right hand up to his mouth. He tried over and over, and finally his fingers found their way into his mouth. I remember feeling so relieved that he had regained this ordinary comfort.
By the next morning, his cultures showed growth which told the doctors what kind of infection they were up against. They changed the dosage of the antibiotics a little. E. woke up happy. We read books and introduced soft solid foods to him. We noticed that food kept wanting to sneak into his right cheek, and he didn’t seem to feel food on his lip. When doctors or nurses tried to get him to stand up, he wasn’t able to stand without assistance. This concerned the neurologists and us. They ordered an MRI for the next morning.
Wednesday morning we walked down to the MRI with E and some nurses. We waited while they did the MRI, not knowing really what to expect. We knew E wasn’t progressing like he should, but nothing could have prepared us for what the doctors discovered. I can’t quite remember going back to E’s room, I think it was there that the neurologists told us that E had a stroke. They knew right away from the damage caused by the stroke that it had originated in his heart. They did so well helping us understand what had happened. I remember feeling numb. Over the course of this week, J and I would often feel numb not knowing what to say. We’d sit in silence and digest what the doctors said and after a little while we could talk again.
Once E was diagnosed with a stroke, the therapists started coming. More questions and analyzing where E functioned before the stroke, so as to establish goals. In the beginning, E didn’t want anything to do with the therapists. They gave him time and got to know his likes and dislikes, and made therapy fun. It wasn’t long before he got so excited to see the therapists with totes full of toys and activities.
Either Thursday or Friday morning during rounds, E bore weight on his right leg and took his first wobbly steps towards the doctor. There were tears of joy and clapping all around. As E continued to heal and make progress we rejoiced at each new accomplishment. As the days wore on, his motor skills returned and improved rather quickly. Young brains are incredible in their ability to heal and make new connections. E had a very limited vocabulary before his stroke. His stroke happened to damage part of the speech center of his brain. Because of this he lost everything except for, “Ummhmm (yes), and Hmmumm (no).” We began teaching ourselves sign language, and doing all sorts of things to help with communication.
His speech continues to be his biggest hurdle. By October of 2015 we were trying to get him to make open mouthed sounds. Anything would do. Since it was near Halloween his speech therapist focused on “Boo”. He has worked incredibly hard with speech therapists year round and can now speak in sentences. We can’t always understand what he’s trying to say, but we remind him to be patient with our ears. Each letter sound, each combination needs to be repeated over and over. I never knew what I’ve always taken for granted about learning to speak. Little babies naturally touch our lips and our faces when we speak to them. They’re discovering vibrations and feel the air while we form words. They learn by observing and by repetition. The thing I have been most thankful for in the times we’ve needed support is that there are people, angels really, who want to be therapists, teachers, and aides. They make it their job to help and support those in need.
The hardest part of all is accepting that things will happen in their own time. There wasn’t much for us to do during E’s first hospital stay, except wait and see. It takes so much surrender when the future looks unclear, when things are beyond our ability to control. The unknown future is awfully scary, but we have an all-knowing and loving God to give us strength. During E’s sickness, dear friends would share Bible verses, we would play music quietly, and reading Psalms was especially comforting. Psalm 121 became my lifeline. I read it every day for months. And our comforting songs were Ellie Holcomb’s My Portion and My Strength and For King & Country’s Shoulders. J and I have experienced many emotional triggers in these areas. Songs, and Bible verses that we clung to for comfort and hope during our hardest days. It comes when I least expect it, in the store, driving, talking to a friend, or in church I hear a verse or part of a song and the emotions spill down my face.
It’s taken me a few weeks to write this post. It’s not easy reliving this part of our life. I’d call it painful, but good. Painful because I’d rather forget that anything happened, forget that this changed our lives. And good because it shows how far we’ve come, how far E has come and how good continual surrender is. My next post will probably focus on E’s heart, what we discovered about it after the stroke and maybe even his open heart surgery. It may take another half year until it feels therapeutic to write again. Feel free to comment or email questions you may have.