First, let me start by saying that I write these detailed posts as a way to keep note of all of the events we go through with Harper. It helps us to have a record of when things have happened, and also to look back for patterns as we go through more and more of these episodes. I share for those of you who ask for specific ways to pray for her. That being said, we awoke to another eventful day with Harper today. At first I was amazed that I was able to get up before her and get the day going, but now I know that I should be alarmed when she’s off of her schedule. She did wake up and make it out of bed on her own, but when she came to me she was barely able to walk, was not talking, and she couldn’t maintain eye contact with me.
It amazes me how much of a routine we have developed with these seizures now. Everyone stays so calm. My oldest daughter automatically starts noting the time for me as we get Harper on her side on a quilt on the floor and gather towels for when she vomits. We get the phones ready- one for me to dial 9-1-1 and the other for the girls to call family, and get the emergency medicine ready for use. There’s even a bag packed and ready to go with a day’s worth of essentials for Harper and Mom.
So far every seizure has been different. Just Sunday she seized while we were at church- running wide open down the hall and suddenly fell and started mildly seizing. On that day she had a series of small seizures over 15-20 minutes and then fell fast asleep and that was it. Today started as the series of small seizures over ten minutes, but then progressed into a full-blown seizure that lasted ten minutes straight. This seizure was also impairing the left side of her body, whereas we normally see it only on the right side. However, because her entire body was seizing and her muscles were so tight, I was not able to administer her meds- and then she came out of it and started fighting me about the time the paramedics arrived.
Due to our last experience and her tendency to relapse into seizures during these spells, we were strongly advised to go on to the hospital, and Harper continued to fight all the way there. She was not thrilled to ride in the ambulance, and did not care to have everyone mess with her today. We were greeted by the same doctor we saw just a couple of weeks ago, and he remembered us and knew exactly how to proceed. He ordered the blood work, but getting that blood was yet another battle. For some reason it is a major ordeal to gain IV access on Harper- she doesn’t have easy veins. Today was no exception, and it was particularly challenging given her feisty temperament… She was much more alert today than she has been in the past. The first team of nurses that attempted laughed at her strong fight and told me to be encouraged because she is obviously going to do great things with all of that strength and determination!
A team came down from the pediatric unit and we all worked together to hold her down while they finally got her IV started. The blood work for today only showed that she was dehydrated, so she was given IV fluids and we were able to go home. She did not seize anymore at the hospital, so we were able to avoid any of those awful, heavy-duty medications that make her so loopy and unable to function, praise God! They are also testing her levels of seizure medication to see where we stand with her current dosage- too little can cause seizures, but too much can cause seizures. And of course we’re also concerned that she may not be getting the full dose in her each time due to the fight we have at home over medicine, so these test results should shed some light on that for us.
This journey is becoming quite surreal for me at this stage. So often these days I feel like I’m watching someone else’s life. I don’t really have the words for it. We were sent into such a whirlwind of crazy events when Harper was first born, and her first year was a steady progression forward, just watching God answer prayers as she met milestone after milestone. Then we had a year of “normal.” And then the first seizure came, and we had close to a year of “normal” again… but now it seems that this strange turn of events is our new normal as the seizures come more and more frequently. She’s had three seizure episodes (episodes because she has multiple seizures each time) in barely two and a half weeks, two of which resulted in ambulance rides and hospital visits. We don’t know yet why she’s suddenly having them more and more or what is triggering them.
I’ve spent my life planning out my next step. When things happen, I want to know what the game plan is. Well, here is my game plan- wait. We take life a day at a time, sometimes an hour (or a minute) at a time. We cannot predict what comes next. We prepare as much as we can- we keep our appointments, administer the meds, document the changes, keep the bags packed, develop our emergency plans, keep her within arms reach 24/7 (yes, she even sleeps with us now), avoid germs as much as possible- but the truth is life is unpredictable. The only thing certain, the only constant, the only assurance we have, is that God is faithful. He has plans for our good, and for Harper’s good, and those plans are to ultimately bring Him glory. So, we learn to be patient, we learn to wait, we learn to accept, and we learn to trust.
Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD.
But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Trust in the LORD with all your heart
And do not lean on your own understanding.
In all your ways acknowledge Him,
And He will make your paths straight.