Difficult decisions

Decision making is not my greatest strength. (Just ask my husband when it comes to choosing a place to eat!)

I like for things to be clear and concise. I like to have all of the information I can possibly have to make an informed decision. I like to be aware of the potential outcomes and know exactly what to expect.

But every time I turn around, I find myself facing a mountain of unknowns, and I’ve spent the last ten years feeling like I have zero control.

Which is perhaps exactly the point… my lack of control is HIS complete control.

I’ve been faced with some rather large decisions recently, decisions that make me uncomfortable, decisions that scare me, decisions that don’t leave me feeling all warm and fuzzy inside. Hard choices that hurt to make.

And another one was given to me just this week… more medication changes for Harper. We maxed her out on her latest medication in hopes of bringing the ESES back under control, but unfortunately she is not tolerating it. For the last month she has had round-the-clock pain that is impacting her appetite, her mood, her energy, and her sleep.

We have tried everything we can possibly think of to alleviate the pain, but nothing is working… there are days she can’t make it through school because she’s hurting so much, and nights she can’t sleep for more than an hour or two at a time as the pain wakes her from her sleep. She is losing weight and losing interest in things she’s always enjoyed. We have been juggling schedules to accommodate her fatigue and feeling unwell, and at this point we are all exhausted.

So the neurologist has given us two potential medications to research, and we are (impatiently) awaiting a phone call to discuss the next step. It is taking us at least a week to receive a response each time we make contact with Duke, so the process is taking much longer than we would like.

In researching the medications offered at this stage, neither seems like a better option. The side effects are terrible. One of the meds isn’t typically recommended for children her age (used only as a last resort). The other poses potential interactions with another medicine she’s on. Both include a long list of negative effects that sound as awful (if not more so) as what she’s dealing with now… coordination issues, memory loss, vision problems, and potential blood disorders in addition to the fatigue, stomach troubles, headaches, and psychiatric impacts.

But we have to make a decision.

There is a lot of pressure in that. Sometimes it feels like we have to choose what misery to put our child through, and that is not a good feeling. While I know it isn’t my fault, it does bring a load of guilt knowing that whatever I choose will have negative connotations for my girl.

As we continue to pray and seek and research and ask questions, would you pray with us? Specifically, that the doctor will be more proactive and quick to respond; that we will choose the best possible option for her treatment; that if part of all of this is finding a new doctor/facility, those doors would fling wide open; and that her body will respond in a miraculous way, tolerating the meds and HEALING!

Looking forward to answered prayers 💜

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