Oh, Duke days. They are draining, even on the better visits. We were there today, making a visit to the neurologist after they called this week and requested to see Harper now instead of waiting another month. We have been playing email and phone tag since our last stay here, and that does not always work so well when there are issues and concerns.
Harper has been having seizures more frequently since our extended stay here, but fortunately not daily. So far we’ve made it about two weeks between spells, and then she’ll have multiple seizures over the span of a few days. We are going to be making another medicine change, this time switching one of her meds to a time-released tablet at a pretty high dose. This will be our last change to this medicine- if this doesn’t work, we have one more new medication to try before we will have to explore different options.
We addressed some other concerns while we were here as well. Harper has been having daily stomach pain, so we will be trying a daily prescription antacid to see if that helps. The doctor said that it can be common for children on anti-epileptic medications to develop reflux issues. They are also testing her liver function to make sure she isn’t having some effects in that area due to all of her medications.
We are being referred to an opthamologist to check Harper’s peripheral vision and to examine her optic nerve- because of the cyst on her brain she could have some issues with pressure on that nerve, so they want to rule that out.
There are so many little things that come into play with Harper’s issues. Between the brain cyst and the epilepsy and the medicines, we have lots to contend with. Sleep problems continue, so we’re going to try melatonin. Behavior issues can be any combination of factors, as can her confusion and forgetfulness. However, we were told today that we need to be prepared for issues like ADD/ADHD, focus and concentration, and learning struggles as she starts school, and that we will need to make sure she’s in a school setting where she can have an IEP and receive the help and services she will need. It was also confirmed once more that Harper continues to have a significant weakness on the right side of her body, but that due to the cyst and brain issues she has, that will most likely be something she will deal with permanently. And, as summer is here, we were reminded of keeping Harper hydrated and cool since one of her meds makes it hard for her to regulate her body temperature.
All in all, it was a productive trip, but once again I walk away feeling… bleh. None of this is major in the scheme of things, and it isn’t really “new” news. We’ve always known there will be hurdles to jump as Harper continues to grow and develop… and when we pause to remember that we were expected to not make it to this point, we have so much to be grateful for.
But it does grow wearisome. It seems something pops up at every bend in the road. There is always another appointment, another test, another specialist, another medicine, another thing to keep in mind. It’s a hard road as a parent, and it’s a hard road for her. Sometimes I just want to put a pause on it all, or to see an end in sight… but we can’t stop, and there’s always one more step to take. So, in those moments of utter weariness, I find hope in these words of truth:
Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. (Matthew 11:28)
But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. (Isaiah 40:31)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. (Galatians 6:9)
As we journey on, please pray that we will have a smooth transition with medicine, that we will get positive news from the bloodwork and the visit to the opthamologist, and that we will have wisdom and discernment as we explore schooling options over the next year before kindergarten. Thank you all ❤