Long time, no update

It’s been quite a while since I’ve done a Harper update, so here we go.  Of course, no news is always good news.  We have avoided the ER since August, and haven’t had to administer a rescue medication since October- big praises!  There has been some seizure activity during this time, but it’s all been controllable up to this point.

We finally got a report back from the sleep study Harper had done in October.  There were no glaring issues or concrete answers.  She has mild sleep disordered breathing and mild sleep apnea, but since it’s mild we don’t have to take any immediate action.  There is a possibility of meeting with a sleep specialist at Duke, a decision we are praying over at this point.  So far we have two opposite opinions from the medical professionals on that, so we haven’t made a final call on that yet.

I also had a meeting to go over evaluation results with a developmental specialist a couple weeks ago.  We were referred by the neurologist for this, but there wasn’t much change as we already have services with both occupational and physical therapy.  Most of the results were no surprise, just formalities- she doesn’t show signs of ADD/ADHD, she does show some characteristics of autism but not enough to warrant concern, and it’s too early to tell about learning disabilities.  He said that it’s hard to tell with Harper how she will do with schooling or what setting will best fit her needs, so we need to be prepared for a lot of trial and error as we consider preschool next year (and of course elementary school down the road).  Her brain is a mystery, and she can make amazing progress only to be set back by one big seizure, so loads of unknowns.  Also, due to the fact that her seizures consistently affect one side of her body, he also recommended looking into an audiologist and opthamologist to be sure her hearing on that side isn’t being impacted and to keep an eye on her eye (her right eye tends to get “lazy” post-seizure, a new trend recently)… All recommendations that we are considering but not sold on quite yet.

Harper has made a lot of progress in therapy.  She is able to take stairs like a big girl now, step over step with little assistance.  She is jumping with two feet fairly well, getting better with hopping, and is even making progress with pedaling.  She has good days and bad days with her balance and coordination, and is hit or miss with her social skills depending on her mood (typical girl!).  Motor planning is still a weak area, and we’ve also noticed that she has a hard time with remembering multi-step directions and sequencing.  We are still working on strengthening her core, and on getting both sides of her body to be a little more equal in strength- her seizures greatly impact that.  However, she has gone long enough without a major seizure now to fully potty train!  (Although we are still using training pants for the accidents that occur with seizure activity).  If she continues to fend off the big seizures and move forward, we may be able to wean back on some of her therapy services after Christmas.

So, I think that’s the big stuff.  We have some decisions to make- sleep specialist, audiologist, opthamologist, preschool options… But we’re in no rush.  She’s stable and we’ve gotten used to the new normal of “mild.”  There are issues, but they’re all mild at this point, and mild is good compared to where we’ve been in the past!  As far as prayer concerns for those of you who keep Harper in your prayers, please pray that her seizures will continue to be mild so that she can continue to progress, that we make the best decisions regarding all the medical advice and opinions we have on the table, and pray for her health and healing this week as she is battling a nasty upper respiratory infection.  God continues to do great things ❤️

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