Mayo Moments

Wednesday, 9 November 2011

Ups and Downs & Prayers and Squares

Almost a month has past since our last post.  In the big overall not much has changed for Leah, she still has frequent episodes, and is still missing on average 2 days of school a week.

Halloween was a lot of fun, the kids had a blast touring the neighbourhood with their friends.  Leah did not make it through the entire night.  One moment she and Megan were skipping up to knock on a door, the next moment, she was shuffling back toward us to climb into the wagon, curl up under blankets and fall asleep.

The results of her second EEG were normal, so it is now being assumed by her regular pediatrician that there is no brain involvement in whatever is causing the episodes.

On November 5th, she had her MRI, she did a fantastic job.  She was well prepared for it, we talked and talked about it, watched a video on YouTube that was made for kids about to have one.  She had her "doggy" and her prayer quilt, and picked "The Incredibles" to watch.  At the end she was rewarded with a medal and a small stuffed animal from the MRI tech for her excellent behaviour.  The good Lord only knows how long it will take to find out the results, as nothing moves quickly.

On November 14th we meet again with Dr. Hallet, the peadiatric speacialist - hopefully she will have some new ideas for directions we should take.

We received the referral for the Endocrinologist - Leah will see someone in MAY!  Again, as I mentioned earlier, nothing moves quickly.

Still no appointment with the Neurologist!  ARGHHH!

On the worrisome side of things,
  • she appears to be losing some weight again, I know she has grown a bit - her pants are short again, but she is appears awfully skinny to me
  • I am noticing more and more periods where she appears unfocused, "dazed" or flighty
  • her energy level is still quite low, she isn't the happy-go-lucky, always bouncing little girl from before.
  • the only time she really lights up is when she is about to meet up with her best friend Megan
  • this week she had 3 episodes in under 24 hours - this has never happened before and has me on high alert
  • the work coming home from school is beginning to show the affects of her frequent absences.  Tutoring is looking like a very real necessity.  We get a report card on Friday and I will have a better idea of her grades - although her teacher seems to think that she is doing very well.

On the positive side - Recently Leah was blessed to have the Prayers and Squares Ministry at Bethany Community Church make her a Prayer Quilt.  Once it was completed, the congregation was given the opportunity to stop in the lobby, tie a knot and say a prayer for Leah.  There are many, many knots representing prayers from the men, women and children that attend Bethany Community Church, and our heartfelt thanks go out to each of them and to the Prayers and Squares ministry group.

Prayers & Squares is an interfaith outreach organization that combines the gift of prayer with the gift of a hand-tied quilt. Unlike many other groups that make quilts for charitable causes, the purpose of Prayers & Squares is not to make and distribute quilts, but to promote prayer through the use of quilts. Our motto is: "It's not about the quilt; it's all about the prayers."

Each Knot Represents a Prayer
The idea behind these prayer quilts is simple. A heavy thread is used to take stitches through the quilt layers, and the ends are left free to be tied with square knot. As each knot is tied, a silent prayer is said for someone in special need, who then receives the finished quilt.

  She received it just in time to take with her to the MRI. 

As always, thank you everyone for your continued thoughts and prayers - we appreciate them so much.  The emails, Facebook messages and kinds words in passing remind me daily that we are not alone in this, we have people - friends and family near and far thinking, praying and rooting for us.

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