Moms, when you have that feeling that something just isn’t quite as it should be when it comes to your children, trust it.  I am learning more and more that I am more in-tune with my kiddos than I think, and it’s always better to err on the side of caution.

We’ve had a rough past couple of weeks with Harper.  I had started to notice small things with her- she struggled with climbing up and down stairs, was uneasy on playground equipment, and started having more falls and kept bumping into things.  Then the behavior issues started.  She’s been super aggressive again, and prone to screaming spells- not the typical three-year old tantrums (although there are plenty of those!), but she also has spells of just pacing in circles and screaming for long periods of time.  She has been a little more apt to shutting down in large crowds or loud places, and then last week the small seizures started again, the first of any kind of seizure activity in about two months.

I have a tendency with Harper to do one of two things- be overly paranoid and question every little difference I see, or ignore things and deny that she has any special needs.  I go from one extreme to the other, and here lately I’ve done more of the ignoring and denying.  She is so smart and funny, such a ball of fire and full of joy and energy, and it is easier for me to chalk up the discrepancies I see as “quirkiness” and just go about our “normal” life as much as possible.

But this time deep down I couldn’t shake the feeling that I needed to ask some questions, and while I was hesitant to reach out, I did finally speak with some people and the decision was made to start with a physical therapy evaluation.  We went today, and a part of me was clinging to the hope that I was being overly cautious.  I really felt that the evaluation would reveal that Harper has no issues other than an over-protective mother.

Unfortunately my gut instinct was right.  It is time to restart weekly therapy services.  We sat down this afternoon and have developed some goals to start with for physical therapy, with the understanding that occupational therapy may be in our future again as well.  And I’m not going to lie- once we got in the car to go back home, I had a moment.  While I am thankful that Harper is able to get what she needs before she falls even farther behind, and I’m grateful that she’s overcome as much as she has in her three years of life, it’s never easy to be told that your baby needs help.  It’s hard to be told that there is a problem, no matter how many times you hear it (and by now you think we’d be used to it!).

No, this isn’t the end of the road, and in the grand scheme of things it’s really a minor setback.  It’s nothing that we haven’t been told to expect as Harper grows, and things could be far, far worse.  Her seizures are still under control at this point, but if they continue we will have to consult with the neurologist again to be sure we aren’t missing something.  She hasn’t lost any skills yet, which is remarkable for the intensity of the seizures she’s had. She just isn’t moving forward on her own as smoothly as we had hoped.

We are learning that Harper’s condition is going to keep us in a constant state of learning.  We never can get too comfortable, and we certainly cannot predict what will happen in the next few hours for her, much less years down the road.  But she’s a fighter, feisty and determined, and I know this is just one more hurdle for her to make her way over one way or another.  God has big plans for this kid, and we’re just along for the ride, trusting Him every mile of the journey.

I almost have to laugh at how many times I start to feel “normal” and things get calm and easy and comfortable- and then Harper shakes it all up again.  We had another one of those weeks this week.  We made it just over a month with no seizure activity of any kind, no fevers or illnesses of any kind, and consistently getting her to take all of her medications every day.  It was a dream, and it was lovely, and I got a little too comfortable with the normalcy.  We were able to go out and do things, be a part of the real world again, and we even started her back in her Sunday school class with other children, let her sleep in her own bed again (but still in our room of course!), and did a little traveling (although not too far away!).

This week the germs hit.  She developed a cold, which quickly progressed into croup and a couple of scary nights of breathing issues.  Sleeping and eating have been issues all week again, and we are back to not being able to get all of her meds in her system on a regular basis.  And when you put sickness, sleep disturbances, not eating/drinking as much, and not taking medications all together, seizure activity is expected.  In fact, we start seeing all the little signs that we are starting to recognize that tell us “a big one is brewing” (in the words of her neurologist).  Fortunately it hasn’t happened yet, so we are thankful for that!

We have seen both the pediatrician here in town and the neurologist at Duke this week.  She had a steroid treatment for the inflammation in her windpipe, and a chest x-ray due to the wheezing in her lungs- we haven’t gotten the results from that yet, but assuming no news is good news!  I was warned about this time of year and the outdoors with her- we’re already cautious with the temperatures since one of her medications prevents her from sweating so she overheats super easy, but apparently she also has some issues with bug bites.  They tend to swell and get infected easily and she had a couple of spots they were checking out, so we have to be extra vigilant with protecting her skin from that as well.

The neurologist visit went well at Duke- as usual she checked out just fine with everything.  I spoke with him some about the long list of diagnoses on her chart to see if he could clarify some of those big words for me… Basically, at this point, Harper is considered to be epileptic simply because she has had so many seizures.  In her case, she doesn’t have seizures because she has epilepsy- she has seizures because she has brain cysts and hydrocephalus and areas of brain trauma, so she has epilepsy because she has seizures.  In addition, she has a tendency to have what they call “status epilepticus,” which means a seizure lasting longer than fifteen minutes.  She has had a few of these, and they are life threatening, so her seizures have to be treated with urgency because she has shown that once she gets started it can be very difficult to stop.

As of right now, the combination of medications Harper is on seems to be working well, so we are staying with it.  However, we did discuss two small changes.  First, he prescribed another medication for us to use on an as-needed basis.  This one we can use for a few days when Harper is sick or when we see those signs of a big seizure coming to help prevent major issues since illnesses so much lower her threshold for fighting them off.  The second change was the best news of the whole trip- he said that he would send our “sprinkle” medicine to a compounding pharmacy!  We were so excited about this- Harper does great with liquid medications, but this one sprinkle tablet has been a constant source of stress in our home for months now.  However, once we got back home, we learned that our insurance will not cover the compounding.  We have decided to pay for one month out of pocket to see how well she takes it, and then take it from there.

So, an eventful week… We stretched our limits a little too much as she did so well and learned that we have to back way off again.  She just seems to catch germs so easily, and then when she catches them she gets pretty sick pretty fast and holds on to it for a while.  It can be so deceiving- she is so wild and happy and full of life and you’d never guess that she has any special needs of any kind when you see her, and even we tend to forget when she does so well for so long.  But behind the scenes there are these little things that we have to remember to pay attention to- keeping her cool and hydrated, protecting her from simple things like bug bites, making sure she gets enough rest and sleep, not letting her get overstimulated, pumping all those meds, watching germ exposure, and of course always watching out for that head of hers!

We’re always learning there’s never a dull moment around here, and this week has been a big reminder to me of the importance of always praying that hedge of protection around my children.  Because no matter how hard I work to keep them safe, I can’t protect them from everything.  I can’t be everywhere, I can’t ward off all the bad things, and try as I might, I just can’t be Superwoman.  But, they have a heavenly Father who can protect them from everything, who is everywhere, who has defeated the bad things, and who is greater than Superman… So the best thing I can do is place them in His hands.

This has been a strange week of adjusting for us.  Earlier in the week we noticed some swelling and redness in one of Harper’s feet that began to spread.  I thought maybe she got bit by something, but as it turned out she had developed cellulitis.  We don’t know if it started from a bite she had before or if it came from the multiple IV attempts they made in that foot in the ER last week, but at any rate, we added antibiotics to her daily medicine diet.

When we are asked how Harper is doing at this point, the answer is, “Good.”  We have made it a week now with no seizures, so that is awesome.  However, no seizures comes at a cost- all of those meds. This new combination has greatly altered Harper’s moods.  She is back to being very cranky and aggressive.  She cries- a lot- and hits and throws things and becomes very defiant.  I know that she’s three- I’ve survived two other girls through the terrible three’s!  This is different.  She’s pretty tired most of the time, but is having a more difficult time falling asleep again, and is fairly restless when she does sleep.

We spend a good portion of our morning and evening trying to get the meds in her, particularly this week since we’ve added an antibiotic twice a day- that means she has to take two syringes of medicine plus two capsules of sprinkles, all twice a day, and she hates all of it.  She also has a very decreased appetite and doesn’t care to eat much of anything, even yummy stuff, so we don’t have a lot of options with hiding her meds in her food right now.  So we are back to brainstorming ways to get things in her, and dealing with the screaming and fighting (and having it spit all over us) when we just have to force her to take them.    I always thought medicine was such a simple fix for a problem, but between the battle to take it and the side effects of it, it’s anything but simple.

So, that’s where we are as we approach the weekend.  Feeling so thankful for no seizures and no damage from this last one, and adjusting to new normals of medication routines and unpleasant side effects and finding that balance between living and protecting her from germs (and keeping her from hurting other kids as her body adjusts!).

There have been moments this week where I have felt sad, frustrated, overwhelmed, and even lonely… But praise God, they were just moments.  Those moments come and then they go, and I’m left with the peace that surpasses all understanding- that comfort of a loving Heavenly Father who is with me through it all, who has yet to forsake me, and who never fails or disappoints.

The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.   -Zephaniah 3:17