Mayo Moments

Monday, 21 November 2011

Disappointing Outing

Yesterday, we had a very full day planned.  We were heading to Toronto to attend our first Christmas party of the year.  While we were there we planned on stopping into the Royal Ontario Museum and maybe even getting to watch some of the Toronto Santa Claus Parade.

We planned and packed, taking into account the amount of time we would be gone and knowing that they would all get hungry, thirsty and that Leah would undoubtably need to lie down at some point.  So into the van went the wagon, blankets, extra food and drinks and the items we had agreed to bring to the party.

Our first stop was the ROM.  We have had a family membership for a year now and the kids and I have spent many an afternoon wandering around visiting various exhibits and re-visiting their favourites.  But somehow, Paul never made it with us.  He hadn't been there for over 10 years, so I was very pleased he would have a chance to see it again and we would have some quality family time.

Unfortunately, things did not work out as planned.  Shortly after arriving, Leah had a small episode and was curled up in the wagon.  We were down in the special exhibit about Mayians when we were approached by security guards letting us know wagons were not allowed at the ROM.  I started to explain to them why we use it, but stopped myself because they are just doing their jobs and can't make changes to policy.  I would just up upstairs and speak with someone in charge and see if we could come to some sort of agreement.  The guards agreed to let us finish the exhibit and then head upstairs to get it sorted out.

Just as we were walking away from those guards, another one marched up to me and demanded that I turn around and walk back out because wagons aren't allowed.  I attempted to explain I had already worked out the issue but he cut me off and said "I don't know how the hell you got that thing in here, but turn yourself around and go back out."  AND then he escorted me out of the exhibit, into the elevator and up to the lobby!  Like I was the trouble maker!  He was so aggressive and offensive, I couldn't believe it!  I was SO offended that I just kept walking and Leah and I left.  We went outside to watch the parade while Paul and the other kids wandered around the ROM.

Leah waiting for the parade to begin

While we were outside Leah had a sudden loss of bladder control, it caught her completely by surprise and she was unable to stop it.  She hadn't had any warning that she needed to go to the bathroom, no feeling of urgency, it just happened.  She was so embarrassed and upset, not to mention cold!  So we packed everyone up and fought our way through the crowds to get back to the van so we could get her cleaned up.  Had to hit a store to pick up some wipes and some Pull Ups to get us through the day and the long ride home.  Cleaned her up, put a new pair of tights on her, luckily her skirt didn't get wet and then off to the party we went.

We had a good time at the party, the kids got to decorate the tree and eat anything they wanted to from a buffet table laden with food!

By the time we got home, everyone was exhausted!  I had planned to go back in and speak with the people at the ROM when we were done with the parade, but due to the circumstances I did not have the chance.  I have however, sent them a very strongly worded email this morning and am waiting rather impatiently for their response.

Monday, 14 November 2011

MRI results

Today was the day Leah had her appointment with Dr. Hallett.  Leah was having a bit of an off morning and it shouldn't have been a surprise for me when she had an episode right in the middle of the exam...but it was, it caught all of us completely by surprise.

But wait, let me back up a little, Dr. Hallett is the Consulting Paediatrican from McMaster.  She is kind of like a Dr. House for kids.  When children develop problems that their regular Paediatrician, General Practitioner or Emergency Department can't handle/diagnose, they send them to the Consulting Paediatrican.  We got referred to
Dr. Hallett through the McMaster emergency department.  She is the doctor that finally gave us the referral for an MRI after we had been turned down by everyone else.

So we head off to Stoney Creek this morning, hit every red light on Centennial Parkway and show up 7 mins late.  With many apologies I got her checked in and then sat and waited and waited.  The appointment was for 10:30am, at 11:05am, I was consoling another mother.  She had already been waiting for 45mins for their first appointment.  I calmly explained to her that Dr. Hallett is totally worth the wait, our previous appointment had lasted over an hour.  She listens, does a very thorough exam, chats with the child, asks lots of questions and never makes you feel rushed.

I think we finally made it into the exam room at about 11:30am, we met with her "Fellow", a kind of assistant or Doctor in Training or something.  Anyway, she was extremely nice, friendly and thorough.  She listened attentively as I ran through Leah's history and took copious notes.  Then she started a physical exam.  As of today, Leah is 48 inches tall and 52lbs. 

According to a Growth Chart Percentiles calculator
At 7 years and 6 months:
your child is 52 pounds, and that is
at the 43rd percentile for weight.

your child is 45.5 inches, and that is
at the 4th percentile for height.

She then took Leah's blood pressure sitting, standing and then again after standing up quickly.  She was about to have Leah run on the spot when Leah suddenly plopped down on the chair.  She wouldn't speak, wouldn't explain what was wrong.  She only wanted to climb onto my lap.  Her pupils were huge, she was cold and she began to cry.  The assistant got her onto the exam table and checked her out then went to inform Dr. Hallett.  They were gone for quite a bit, during which Leah wiggled her way further and further onto me and off the table.

Finally, they came back.  They had called McMaster and gotten the results of the MRI Leah had a week ago.  Leah has "Non Specific Changes in the White Matter" of her brain.

The appointment ended quickly at that point.  It went without saying, that Leah was done for the day.  We were sent home with a promise that she would be contacting Neurology herself and SHE WOULD get us an appointment.

A few snippets about White Matter Changes
  • White matter refers to the fibre tracts that carry information to and from the brain.
  • The brain is made up of gray matter and white matter.
  • White matter is where the hardware connects to carry messages to the areas of the brain.
  • The brain is about 60 percent white matter.
  • White matter changes are an extremely common finding in the MRI scan.
  • White matter changes are commonly seen in demyelinating diseases.

Now we wait, again.

Tonight I can't decide if I want to waste my energy being mad at all the doctors that told us a MRI would be useless to us; that because the CT Scan was fine, an MRI wasn't necessary.   One side of me wants to call up our paediatrican and just let loose, but the other saner side says what would be the point.   I am however interested to see what he has to say when he receives the results.

Would it be out of line to needle him about it just a little bit?  I think I am petty enough to get some enjoyment out of that.

As always, please pray that we get the answers we are searching for, we might just be on the right path this time.

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.