July 29, 2013 -- Quick Update and Prayer Request!!!

Hello dear praying friends and family!  It is with a heavy heart that I write this update tonight. . . I had planned to do a more lengthy update of the past month or so and some of the neat things that we've been so blessed to see God doing in Hope's life and continued slow recovery. . . but that will need to wait a bit longer. Hope had the worst day she has had, health-wise, for a long time.  Even as I write this, I am reminded how far God has brought our precious girlie as days like these used to be the norm!  We praise and thank Him for the fact that this is no longer the case, yet after the scare we had tonight, we are reminded that we are never far from needing to fall on our knees to beseech the King of Kings asking for His continued mercy, healing, wisdom and comfort all the while remaining in complete submission to Him and trust in Him!

Hope was sick last week with a fever for two days, sore throat, cough, stuffed nose and pounding headache. She didn't sleep well and Trev and I took turns being up with her at night.  But she seemed to be on the mend by Friday when we got home from our week away.  We had a busy weekend, and although she did have some significant myoclonic jerking on Sat evening, she seemed okay. Last night she had a horrible night sleep. . . well, that to say, she DIDN'T sleep!  Trev and I again took turns being up with her all night long. We were both exhausted by morning and unsure of what was going on with her.  She hasn't had a significant unwell bout for quite some time, so maybe that?  Early in the morning her restlessness turned into nausea and she spent all morning throwing up over and over. . . tons of stringy mucous. . . sorry for the gross description there!. . . again we just assumed most likely the tail end of her cold or maybe a tummy bug?  The rest of the day continued to be increasingly exhausting as she had multiple severe complaints. . . too warm, then too cold. . . severe itching all over her body. . . refusal to eat anything. . . general restlessness and just plain grumpy. Again we wondered was it just an overtired kiddo or another bug brewing, or a new kind of unwell bout?
We tried a warm bath, after everything else we could think of earlier in the day, to see if it might help the severe itching that was driving her crazy, and us in being unable to help her. As Trev was carrying her back from the bath, Hope went into a severe seizure. . . she hasn't had one this bad since January on half the dose of anti-seizure medication!  Her breathing and air entry were compromised and her lips turned blue.  She was completely unresponsive during the entire seizure and her oxygen saturation level dropped to 67%.  It lasted for at least 5 mins and her recovery from it took almost 20 mins more, during which time she could not speak or move properly and her oxygenation sats were slow to recover.  After her recovery and a short post dictal nap (common after severe seizures), she went right back into complaining of severe itching and temperature regulation issues again as well.  She is still awake now, even after asking for and receiving her "sleepy juice" or Melatonin.

We have emergency doses of a drug called Ativan to try to stop a severe seizure that lasts over 5 mins, and we had it out ready to give if necessary and then rush her to the hospital, but chose not to give it as we saw some signs of her coming out of the seizure after about 5 mins. It was scary and a stark reminder that our sweet girl still has serious life-threatening health issues. It honestly was also disheartening, as you feel so quickly thrown back into the pit of worry. . . will this continue to happen?. . . could we yet lose her to one of these severe seizures?. . . should we have been more quick to give the Ativan?. . . or is the Ativan another drug that will mess things up even worse?. . . is she going to start to digress in her condition like last August and the horrific 6 months that ensued?. . . or the age old question that has been asked hundreds of times and rarely with any answers, what is causing this?. . . and without that answer, then how best to treat it?. . . Lord, why her?. . . Lord, does she have to continue to suffer more than her day to day obstacles and struggles already bring?. . . so many questions. . . so few answers. . . that pit of worry can be a never-ending black hole, can't it!

I am reminded of one of my favourite passages, and a Scripture song, sung often in our home. . .
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God that transcends all understanding will guard your hearts and your minds in Christ Jesus."  Philippians 4:6-7

"With thanksgiving". . . Sounds strange by human understanding in a verse all about anxious thoughts, but we do have so much to be thankful for, don't we!  Simply that this now feels like a "stand out" day, where this used to be an every day or common occurrence. Praise Him for His healing mercies!  What about how much He is with us throughout every minute of these stormy trials!  Praise Him for His unfailing love and faithfulness!  My mom called during the seizure and our precious Gabi answered the call, told Grandma calmly what was happening and that she could call back later. My mom knew to pray and called my sister in Oregon to pray as well!  Praise Him for being a God who delights in hearing our petitions and wants us to cast it all at His feet because He cares for us!  1 Pet 5:7. This list could go on and on!  There are always so many things we can always thank Him for, even in the midst of a scary storm!  

And so I share this heavy heart and request for prayer with you, knowing that as God's people pray, God will give the peace that we need to avoid the pit of worry and instead walk in trust and obedience, by His grace and for His glory!!!  Please pray for that peace for us, even to what is beyond our understanding!  Also please pray for wisdom as to what steps to take tomorrow, calls to make to doctors, comfort measures to help Hope with the upsetting symptoms she's having, etc.  And also for strength when physically exhausted and spent/frustrated . . . may we always find our strength in Him and trusting/depending on Him throughout rather than just when we're at the end of or rope.  And of course, we continue to boldly ask for Hope's complete healing, trusting in our God's power and ability to do it, as well as His goodness and love even should He choose not to. Thank you dear ones, for your continued love and care for our family, and the multitude of prayers that hold us up daily, hourly, and at times, minute by minute!  : ). It never ceases to amaze and humble us as to how many people continue to faithfully follow Hope's journey and pray for our family!  You are so very loved, dear ones, each and every one of you!!!