Updates from quarantine

I have been struggling with the updates on here.  It isn’t that things aren’t happening- they are.  But after walking this path with Harper for over seven years now, I have reached a point where my updates seem to be saying the same thing over and over again.  This ride we are on is not so much a roller coaster of ups and downs, but a carousel of the same ups and downs going around and around over and over again.
Harper’s allergy situation has improved.  She has not experienced any more of the rashes or hives or throat closing off, and we are still awaiting an appointment with a specialist for pulmonary and allergy testing.  She has had pneumonia twice in the last few months, once in each lung now, so we are also keeping a close eye on that.  Her physical therapy has continued all this time via Telehealth visits at home, and we will be resuming occupational therapy next week.  She has a regular checkup next week as well and some lab work to be done, and then if traveling is possible we will be heading back to Baltimore at the end of July for neurological and neuropsych visits and testing.
The neurological aspect of everything has been challenging throughout this Covid-19 pandemic as Harper’s neurologist is at Johns Hopkins.  Her last EEG was in March right before everything got crazy.  That EEG showed some improvement on the Depakote treatment for the ESES she was officially diagnosed with in January, which was good news. 
Unfortunately, since March, we have already had to increase that medication twice.  Her seizures have been relentless.  Granted, they haven’t been severe, and we thank God for that.  But they just won’t completely stop.  Her sleep has been very restless again, and we’ve even seen seizure activity while she’s been awake, which is very unusual.
This is that repetitive update I mentioned before… Harper has been in this cycle with medicines since she started having seizures in 2015.  They work great at first, and then they become less and less effective as her body adapts.  That is why we have gone through so many anti-seizure medications already, and why she ends up taking the insane amount of medicine that she takes.  I snapped this picture this morning as we opened the latest bag from the pharmacy…

This is just ONE of the medicines that she takes every day, and this is a month’s supply.  That is FIVE large bottles per month going into her body of just one particular drug- she has two other daily liquid prescriptions (and by daily, I mean multiple times a day) as well as a wide range of supplements to combat the side effects and a special bag full of emergency medications we keep with us at all times just in case. 

Please do not misunderstand me- I am GRATEFUL.  Right now these medicines are keeping her alive.  I am thankful for a doctor who has found the right combination to slow down the regression in her brain function.  I am blessed that we have good health insurance to help cover the astronomical costs of these medications.  I am glad we live in a time where research is being done and new developments are being made and my baby can be treated.  And I will forever praise God for the miracles He has worked in her and the direction He has led us thus far and the joy that she brings to us.

But sometimes it is scary.  We know that we are running out of medication options.  We know how close we are to being maxed out on this treatment already, and we just started it in January.  And we know that at this point in time there are no other options aside from medicine for her condition, as was discussed with us last year.

We also are living with the reality of what all of this is doing to our girl.  She is exhausted all the time… but sleep is a joke.  She doesn’t nap at all, and she can only fall asleep at night with melatonin and then wakes multiple times a night only to be up with the sunrise in the morning.  Between feeling hungry all the time from the medicine and being wiped out all the time, she’s gaining weight.  Her memory is still struggling, but she’s becoming more aware of it, which is so hard to watch and explain.  Her behavior has been really rough the last month or two- anger, violent outbursts, high emotions, and she requires CONSTANT attention during the day.  Between the seizures and the brain issues and the loads of medications, it is next to impossible to determine what is causing what with her, so we just keep adapting and adjusting and trying new things… and fortunately the whole quarantine-situation has made it a bit easier to just stay home and deal with it ourselves for a while!

I cannot explain the “why”s or the “how”s or the “what will be”s… Honestly, I cannot even think about them, because if I let my mind sit there, I’ll drown.  And I’m not ready to drown today!  Instead, my mind has been camped out on the truths of God’s Word this week, and He has laid one passage in particular on my heart that keeps repeating through my mind… Psalm 23. 

He leads.

He restores.

For his name’s sake.

I will fear no evil for HE IS WITH ME!

He comforts, He prepares, He annoints…

He is GOOD.

Psalm 23…
The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
For you are with me;
Your rod and your staff,
They comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
And I shall dwell in the house of the Lord forever.

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