Wednesday, September 26, 2012


The past few weeks have literally been jam packed, like a tennis match, bouncing from one end of the court to the other.  Finally, we are falling back into the familiar swing of routine, a sort of comfortable predictability for the time being, at least until the next shoe drops.

Both girls have settled into their classrooms, loving their teachers as well as being with old and new friends.  Second grade is bringing new challenges to the table for Paige, while kindergarten is exactly what Gwyn had been hoping for.  Honestly, we couldn't ask for a better start to the school year!

We are still working to combat Paige's night terrors and migraines.  Luckily, nothing related to her ailments was found during her neurological assessments.  Nevertheless, last week we had a night where she was up every twenty minutes.  The next morning, she didn't remember any of it.  I, on the other hand, was beat.  I'm shocked she does not wake up exhausted!  Now we are trying yoga before bed as a way to relax her body and mind.  I am hoping I reap the same benefits she does.  Nothing eludes sleeps more than when worry wrestles with your head before bed.  Much like me, Paige cannot tone down the thoughts from her day when it is time to sleep, instead whatever concerned her during the day continues to stalk her mind in the evening.

In terms of Cole, we are in a calm period until next week when the cycle of appointments begins once again.  Ultimately, we did sign the consent in order to place him in the nk cell study.  Our hopes are that this will provide not only us and our doctors with pertinent information as it becomes available, but that by being a part, we are able to provide information that can help physicians of other patients who are also plagued with issues like Cole's.  Some where, some time, I know there will be another family, like us, facing a journey and choices beyond anything they ever imagined, turning their lives upside down, their paths far off course.  My biggest hope is that the researchers are able to make progress from what they learn from Cole, that his cells can be the difference for someone else, that something good will come from all of this.  For now, we wait for the next piece of news, enjoying every second of play until we are faced with our next steps, hoping we travel the right trail, even if it is an uphill climb.

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