Many do not know that my husband and I are currently in the middle of watching our sweet 10-month-old daughter undergo testing to help solve a problem of repeated seizure episodes. A few months ago we noticed her tossing her head forward rather violently in repeated motions: toss, recover, life as normal for a few seconds, toss, recover, a few seconds of normalcy, repeat. She would do this in groups or ‘clusters’ of tosses so that within a few minutes she had launched her head and torso forward 15 or more times and then it would just stop completely. Early on, we were unconcerned with these events and just passed them off as nothing because- you know- babies do weird things. However, at her 9 month check-up things changed a bit because she was no longer growing and meeting normal developmental milestones. The red flags started going up immediately in my head and while we went home with a plan to increase her feedings to up her weight and rebound her energy so she might catch up developmentally, I had to believe there was something deeper going on! My seemingly healthy baby was struggling.
That’s when it hit me. Those weird movements! Maybe there was a connection!
So, I did the thing no worried mother should EVER do– I jumped online and started googling what I had seen. After just a few short minutes I came to the conclusion that I needed to call the pediatrician right away and request to be seen by a neurologist to test for what I thought might be ‘infantile spasms‘- a form of infant epilepsy that often presents alongside developmental regression and stunted growth.
Now I just want to take a minute to recognize our pediatricians and the fact that my ‘mother worries’ alone were enough word for them to go on to order an EEG scan, a rush meeting with a neurologist at the Children’s Hospital so she would get fantastic care, and a general trust that if I was seeing something strange it needed to be taken seriously. I cannot tell you the relief I feel knowing I did not have to go to bat just to have my baby seen by specialists to get answers.
So, off to the Neurologist we went. A quick EEG scan was done and immediately afterwards we met with one of the many Neurology docs on the floor to discuss what we had seen, share the video I had enough forethought to capture, and discuss future plans. Again, I am so grateful for professional and caring doctors who trusted my instinct that something was wrong (and having the video to share afterwards helped to solidify that I was seeing abnormal behavior) and chose to act on it. We are blessed by great care for our babies!
After leaving I was told that my original concerns of ‘infantile spasms’ was unlikely because it would have been clearly shown and easily identifiable on the results- a small measure of relief for me! However, we found out the following day that her scan did reveal abnormal activity which we were told was called ‘epileptiform discharges’ and while they were unlikely to be the cause of what we were seeing, they definitely indicated she was at risk for seizures. Now I was concerned for my baby and what might be wrong- but I was SO GRATEFUL for those moments of concern and the doctors who took me seriously and worked to find answers for me. I had been right- something was going on.
As the days grew on we scheduled a longer-term EEG to catch some of the strange movements I had seen and get some data so they could figure out how best to diagnose and help my baby girl. Unfortunately, her episodes got more severe and she clearly was uncomfortable during each one so we are now in the hospital after being admitted last evening under an emergency basis- after calling the doctor they again took my untrained, unprofessional, instinctively worried concerns and considered them to be important enough to admit her.
Since admission she has not had another episode- a bittersweet thing when you need her to have one in order to get some answers. She has however shown more activity which aligns well with the data from the previous EEG scan at our last visit and she also experienced a 15-second seizure that had no external symptoms at all. She had a seizure and we never would have known!!
So here I am, praying for another episode so we can get answers and simultaneously praying for rest and comfort for my sweet child. Here I am sitting reflecting on how blessed we have been through this experience thus far and how appreciative I am to have skilled and caring staff to call upon to shoulder the weight of our unanswered questions.
Here I am…………. waiting.
And through the long stretches of waiting without answers I am reminded that Patience is a fruit of the spirit and that a large part of my ability to sit with a peace of mind is because I trust in a big God and my trust in His care for my daughter is bleeding over into how I handle myself in these situations. I choose to choose patience over anxious waiting. I choose to choose peace over nervousness. I choose to remember that I would not have the power to sit and watch my infant girl with wires connected to her entire scalp if it were not for the fact that I believe in a God who holds ultimate control and who cares even more deeply for her than I ever can. He created her first- then He gave her to me.
Romans 5: 3-4 “Not only so, but we glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
Luke 12: 24-28 “Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?”
Jeremiah 17: 7-8 “But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like trees planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”
I hope to be a tree of trust and confidence in the power of God when it comes to my daughter. I hope I can show the people who are caring for my precious child that I trust in a God who created them and made them with a passion that drives them to care for my baby. I hope I can show for my friends what an unshakeable faith looks like as I wait for answers that could potentially have drastic implications for my daughter and her future.
I am frustrated by my inability to help my sweetheart. I am growing weary from not being at home. I am uncertain about how I will go forward if the news is bad. But I am not alone- and therefore I am NOT afraid.
Please pray for me, for the people who are coming in and out of this room, for the doctors and specialists reviewing every detail of these scans, for my sweet baby girl as she has no understanding of what is going on, and for our support system at home that is waiting in prayer for the answers we all are seeking.
God bless you!
-Faith
