Oh, life with a medically complex child… it is never dull, that’s for sure.
The last few weeks have been slightly tumultuous. No one big, catastrophic thing, but just little things that make a mama tired. We increased one seizure medicine for the ESES, then decreased another one to try to combat fatigue, but then she started having breakthrough focal seizures again.
Harper had her appointment with an allergist finally, and it was determined that she is allergic to cats, dogs, grass, and mold, and he was very concerned about her two bouts of pneumonia already this year. There was no real explanation of what happened with her inability-to-breathe spells a while back, so for now we continue to carry an epi-pen and rescue inhaler. If she develops pneumonia again this year, he will want more in-depth testing.
We had been doing Telehealth physical therapy during the Covid-lockdown, but she began complaining of pain in her feet and ankles and having more and more falls, so the therapist had to start making home visits and add more exercises to our routine. She also picked up on some issues with some reflexes and crossing midline and perception/body awareness, which are some of those brain issues that are affecting her muscle coordination, so new challenges and things to try there as well.
Harps also resumed her OT services with her favorite therapist this last month, and through that she was referred over for a speech therapy evaluation which indicated a need for some auditory processing therapy as well. It has been amazing to see all the pieces coming together. Granted, it’s exhausting as that has us at four therapy appointments a week right now in addition to any doctors (and three of those are in Wilmington), but to see how they all fit together and how Harper can get help for some of these things that I thought we just had to deal with is incredible. Therapists are pretty fabulous people!
Today was one of those days that reminds me of the fragility of Harper’s condition. We tackle all of these things and do what needs to be done, but every so often we have a scare that jolts us… and this morning was one of those moments.
Lately Harper has had to have a lot of blood work done. With the medications being altered so frequently and her constant fatigue and illnesses all the time, they’re always needing to check something. So last week she had some follow up testing for thyroid function because her thyroid levels had been fluctuating, and her neurologist requested a couple of additional tests while they were drawing blood.
Well, I woke up to a message from the doctor first thing this morning that one of those levels was dangerously elevated and we were waiting on neuro to tell us what to do. Now, I know full well not to Google these things by now- but as I waited with no clue as to what any of this meant, I started searching, and went into full panic mode at the results. Liver failure, kidney failure, brain damage, lung damage, coma, death… y’all, it was not good, and I was a hot mess.
We ended up spending our day messaging doctors and making phone calls and going to the hospital for more testing- and praying, a lot! My girl was amazing through it all- so brave and strong, and even used her words to talk to the phlebotomist about the needles and blood and took it like a champ.
By the end of the day we received better news… the numbers were down from last week’s test. She is still elevated, but not at an emergency level as they thought. For now we are able to make some medicine adjustments and keep monitoring, with more testing in two weeks.
So, for those of you who pray with us through this journey, I haven’t shared a specific list in while, but I will tonight:
- No more pneumonia this year
- No increase in seizures as we adjust meds
- Improvement in ESES even though we have to decrease the medicine for it
- Improved cognitive function on her neuropsych testing in a few weeks
- Decrease in ammonia levels in her bloodstream over the next two weeks
- Decrease in fatigue and increase in energy
I was reading Romans 12 today, and while there is so much there to soak in, I’ll leave you with this tonight from verse 12… “rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” We do not rejoice because of our circumstances- we rejoice because of our hope, and our hope is a Person, Jesus Christ. Because of that, we can be patient in our trials (and maybe when we’re patient we should lay off the Google searches!).
But it’s that last part that God laid on my heart this evening… we always say to keep moving, to keep going forward, to continue on. But there’s a way to do that- we continue steadfastly. Steadfast means resolutely or dutifully firm and unwavering. We don’t push on with our doubts in tow- we push on without wavering from Truth. We hold on to what we know no matter what. And that verse says that we continue steadfastly in prayer. Prayer is communication with the One who sustains us- whatever we’re walking through, we are not alone.
Here’s to continuing steadfastly, my friends… praying for you and with you, and asking you to do the same 💜