Life moves too fast sometimes! My 5th grader and I still have a good 12 weeks of Rome to the Reformation curriculum to finish this summer, along with 30 or so days of 1st with our daughter. We used to intentionally do a year-round schooling schedule but have tried for a more traditional summer off the past couple of years. I would honestly love to be "done" for the summer right now, but I'm praying for renewed energy, joy and focus for us all as we jump back in today after so many schedule interruptions. If you could take a moment to join us in prayer for this, I would so appreciate your encouragement and support!
We survived the sleep deprivation required for Little J.'s EEG last week. The testing and extensive appointment with his new neurologist went very well. He has not had any more seizure activity that we have witnessed, though his neurologist thinks the chronic tummy pain he complains of may be related to seizure activity, so we are watching that more carefully and doing further investigation. Tomorrow morning he will be hooked up to more EEG leads and sent home for with a backpack to do a 24-hour EEG read. If that one comes up all clear, we will just "wait and see" from there. If any concerns show up on the 24-hour test (the 1-hour was all clear) our next step will be MRI (requiring sedation) and possibly medication.
Sunday we purchased an audio/video monitor for J.'s bed and finally got him moved back to his own room after having him sleep with us every night since the ER trip. I honestly don't know that I'm sleeping much more soundly with him in his own bed because we are constantly waking to check the monitor, listen and watch. But it is at least a little easier on my body to have him out of our bed and maybe my new collection of bruises from his toes can start to heal up now. ;)
What a blessing to have Rick home for the 3-day weekend yesterday. We have just under 3 weeks left until my parents leave for their mission trip and time is feeling very short right now. (I depend on them heavily for help with the kids when my health tanks. They will be gone from June 21- until late September or mid October.) Rick grilled a couple of lovely racks of ribs and my parents brought over a huge watermelon for a backyard BBQ last night as we reflected with thankful hearts for the blessings of our freedom and the sacrifices made for us to enjoy evening such as this. To any with loved ones in the military, please drop by and check out the ministry my parents have served with for the past 38 years, Cadence International (formerly Overseas Christian Servicemen's Centers or O.C.S.C.)
I'm still trying to recover from our trip to Stanford. I have been logging symptoms and stats like temperatures daily for nearly 2 weeks now and while I know my doctor needs to have the medical record, it's rather a depressing process. I cried myself to sleep Saturday night, just frustrated at all I can't do, all I'm missing out on in daily family life, all I want to be giving my children and husband and friends but illness steals away. Sometimes I need that release of tears, but today is a fresh day, pity party is over, and I'm praying for wisdom, direction, clear priorities, peace, joy and contentment in the life God has called me to.
Tuesday, June 1, 2010
June?
Labels:
CFIDS,
CFS,
chronic fatigue syndrome,
chronic illness,
homeschool,
joy,
ME/CFS,
motherhood,
neuroimmune,
peace,
prayer,
XAND,
XMRV
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3 comments:
Praying, praying, praying for you!! I know it's so hard to wish for things to be done and you to be moved on, while at the same time, not wanting to wish your life away! At least that's how I often feel. I want time to go ahead and things to be done, but hate that I can't enjoy the moments!
Lots of love!
Oh Jenni, you are so real about what you are going through and I love that about you. I pray for you and think of you all of the time. I know it is so frustrating to not be able to do the things you have been wanting to do, especially as the mom. Dear Lord I lift up Jenni to You. Lord Jenni waits upon You to be her help. Lord I pray that her help would come soon and that you would comfort her heart as she waits. In Jesus name.
Oh, my gosh, Jenni...with everything else you're dealing with, you homeschool, too? I can't imagine attempting that with CFS. Fortunately, both my kids have thrived in public schools, even when they were at their sickest.
Sorry you're going through such a difficult time. I've been through it myself. You're in my thoughts and prayers, Jenni -
Sue
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