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.

Feeling......?

I can not put into words how I am feeling today.  Yesterday Leah had her appointment with the Neuromuscular Specialist and unfortunately, we are really no further ahead.

He and his resident both feel there is something wrong but it does not fit within their area of expertise.  He feels we will be better served by seeing the Neurologist.

The word disappointed comes to mind, but I can't be disappointed to have degenerative muscle diseases crossed off the list.  I should be happy about that.

Defeated also is on the tip of my tongue, but again, it is progress of a sort.  Ruling out syndromes, diseases and illnesses will eventually lead us to the answer.  I guess it is the EVENTUALLY part that is causing the angst.

I knew going into the appointment that nothing happens quickly.  I knew that we weren't going to walk out of there with a definitive answer.  I also knew that it was just one step in the right direction.  But I guess I didn't expect us to get cut loose right away. 

They did a test called a Nerve Conduction Study or NCS.  In a nutshell, this test is used to diagnose

• Pinched nerves and inflamed muscles due to injury, a ruptured disk, disease or other conditions
• Carpal tunnel syndrome, characterized by pressure on a major nerve that causes pain in the wrist or hand
• Primary muscle disorders such as muscular dystrophy (a disease that causes certain muscles to atrophy, or waste away)
• Neuromuscular disorders such as myasthenia gravis (a dysfunction in nerve impulses that leads to chronic muscle weakness)
• Nerve disorders such as amyotrophic lateral sclerosis (commonly known as Lou Gehrig's disease)

So really, in a matter of moments with the help of a couple of electrodes, they were able to rule out a whole bunch of really scary disorders.  It really is some pretty awesome technology!

Now we are back to waiting.  Waiting for the MRI (November 5, 2011), waiting to get the results of her EEG and waiting for that ever elusive Neurology appointment.

PROGRESS!!!!! :)

Well, we haven't found the magic bullet yet, but we are making progress!  First and foremost we got the orders for a MRI! 

But first a bit of history, a couple of weeks ago, before Leah collapsed for the second time, she had a very bad morning, very lethargic, no energy, not eating, extremely blurry and dizzy, with a bad headache.  We decided to bring her to the Children's Emergency at McMaster.  She was seen very quickly but we got the same response as usual, it isn't an emergency situation and wasn't something they could deal with, within the scope of their work.  They offered us two options, we could be referred to the Paediatrician on staff which would be a one time visit of a maximum 20 minutes, the plus side being it would be the next day.  The second option would be to be referred to a Consulting Paediatrician who would follow her case until its conclusion but would take a couple of weeks to get the appointment.  This option would result in the best possible outcome - someone who could give me a second opinion AND actually do something about it.  So the choice was obvious - wait a couple of weeks and get a second opinion.

A Consulting Paediatrician is a doctor without a regular roster of patients.  She receives referrals from hospital system for children that are in need of a higher level of care than a general practitioner can provide.  Once the "crisis" or medical need is over, care is returned to the general practitioner.  Prior to going to our appointment, I did a little research on her, I went to the website ratemds.com to find out how other parents felt about her.  The response was great!  Parents were extremely pleased with both her medical skills and her bedside manner.  A couple parents even said she figured out their child's problem when no one else could!  HALLELUJAH!  My own personal Dr. Gregory House!

So off we went, with previous test results in hand, my little green book detailing Leah's daily symptoms, complaints, appointments and treatments and a whole lot of hope.

This doctor was FANTASTIC!  She actually spoke to Leah, asked her lots of questions and only looked to me for clarification.  Then she settled her down with some books and then it was my turn.  She really, really, really listened, took copious notes on Leah, her siblings, her family and her friends.  She reviewed the test results and agreed with Leah's paediatrician in saying that it is a very confusing group of symptoms that don't appear to point to anything in particular.  However - and this is what sets her apart from the others - she does not think it is a good idea to just sit back and wait!  She has ordered the MRI, realizing that the Neurologist will want one when we finally get the appointment.  She has also sent out a referral to the Neuromuscular Specialist at McMaster.  We should be able to get an appointment with him relatively quickly.  She did hasten to add that this doctor can sometimes be lacking in bedside manner but he is brilliant.  Even if it turns out that he can't give us a diagnosis, he will be able to assist us in ruling out things.


All in all, the appointment lasted almost 90 minutes.  Not once did I feel rushed, or like I was wasting her time.  She has even gone so far as to assure us that if the wait time for the MRI is too long, she will contact us so we can go over to Buffalo MRI and have it done there.  I think that what makes me feel the most relieved (in a weird sort of way) is that she feels the urgency that I do.  She understands my desire to get answers or at the very least rule things out as quickly as possible. 


I actually slept last night for the first time in weeks.  I don't have any answers yet, but I feel so much closer!