3 Weeks Have Dragged By and No Appointment

I really do think this has been the longest three weeks of my life - with no end in sight.  Despite repeated calls to McMaster, we still don't have a date for Leah's thyroid Fine Needle Aspiration Biopsy.  It seems there is a back up in Diagnostic Radiology and her appointment will be delayed while they "triage" the wait list.

I want to scream and shout and throw the mother of all tantrums!  "What is there to triage, this is an eight year old little girl!  She needs this done NOW!"
But of course I don't, because my more logical self knows that

• it won't do any good - it might feel good to just let it all out but it won't help
• there are many people on that waiting list with the same feelings I have
• because Thyroid Cancer is as her endocrinologist says "the good cancer" or, "If you're gonna have cancer, this is the one to have!"  And this means they won't triage her as urgently as I want
• the scared mommy side of me really doesn't want to know because then it is real and right now I can still pretend

Right from the start of all of Leah's issues, when I would feel myself sliding into bouts of self pity and "poor Leah", I could give myself a kick in the pants by reminding myself it could be worse, it could be cancer.  When we finally got her MRI back and it didn't show any masses, it was a big PHEW! moment - not cancer.  I have always figured I could handle anything as long as it wasn't cancer.  

Now when I am having a bad day dealing with the doctors or watching Leah have her issues, I automatically start my mantra, "remember, it could be worse it could be cancer....oh wait, it might be!"  Which then starts a whirlwind of thoughts and feelings that just feed off each other.

I need a new mantra.  Something a little more positive.  Today I am drawing a blank, but I am sure it will come to me.  Because really, I have to remember that even it if is cancer, we CAN handle it.  It won't make me throw my hands in the air and give up.  I can't, Leah will need me.

Merry Christmas!

From our family to all of you

As with most other families, things have been crazy and hectic at the Balint residence.

Between school events, Christmas parties and just the pure and simple excitement of Christmas, we are finally enjoying some relaxation!  The kids are on their second pajama day in a row and I have no intention of changing that.  :)

But as always, when the schedule gets too out of whack, and the excitement level too high, Leah suffers.  I had hoped that the pj days would help, but I think it was too little too late.  Today the poor thing is crawling throughout the house because her heads hurts so much and she is so dizzy she can't walk.  She was also up throughout the night and in bed with me but very restless.  She has finally succumbed to the cold that the other kids had, so that is making matters worse.  Her little system is completely confused right now.

The girls also reminded me that I hadn't given an update on Ronald McDonald House yet.  So here goes...

We collected enough items to put together

• 30 toiletry bags for the parents.  Inside each were a toothbrush, toothpaste, deodorant, shampoo, conditioner and a little baggie of Hersey's Kisses.  These went to Ronald McDonald House (RMH)
• 10 bags of just deodorant, toothbrush and toothpaste for the Ronald McDonald Family Room (RMFR)at McMaster
• a large gift bag filled with toothbrushes and toothpaste for both sites
• paper goods (plates, cups, napkins), cereal, snacks, hot chocolate, suckers, juice boxes, crackers for the RMFR
• paper goods (plates, cups, napkins) cereal, snacks, pasta, sauce, cake mixes, icing, canned veggies, soups, crackers, suckers, hot chocolate, etc for RMH

The girls were so pleased with their efforts, they decorated the bags and boxes and picked a nice big totebag to carry it all in.  We attached these little cards to each of the bags.

And here are the girls dropping off the donations to RMH and the RMFR at McMaster.  They received such overwhelming thanks from the volunteers that they are already thinking of ways to do it again!

Again, to everyone that helped us accumulate the items for this donation, thank you from us and from the staff and volunteers at Ronald McDonald House - it was all very much appreciated!

November's Update

After a couple of weeks full of doctor's appointments and trips to McMaster, I finally felt prepared to give a long comprehensive update on Leah.

INFORMATION IS POWER
As I think I have mentioned before I feel most in control of all of this when I am well informed.  I have been very heavy into research and networking with other patients and parents of pediatric patients with similar issues as Leah. There is so much information and data gathering that has to be done and kept up to date for each of her doctors.  I feel like I have turned into a fact-spouting documentation obsessed lunatic!

As a coping measure I have developed a large binder full of information on a variety of subjects relating to her issues as well as keeping copies of her medical history, bloodwork and diagnostic results and an ongoing list of questions.  The binder I use is similar to the one below.  It even has a shoulder carrying strap!  At Leah's last appointment I had it on the chair beside me open to a few articles that were heavily underlined with points I wanted to address.  When the doctor walked into the room I actually saw his shoulders slump!  Poor guy knew it wasn't going to be a quick easy appointment!

I have also created a document chronicling all of her bloodwork.  As I explained to one specialist when he wondered why I would do such a thing....I need all the doctors Leah sees to be able to take a look at the bigger picture.  They need to be able to see more than just the results of the tests THEY order.  Maybe if they had access to a document like this previously, so much time wouldn't have been wasted.  With this chart they can see at a glance how she is trending and draw conclusions from that.  For example, if her esoinophils and her IGE are consistently elevated (which they are - minimally) that indicates that there is an allergic response to something going on.  Now that triggers an investigation into what she is allergic to.  Eliminating any reason to rev up her immune response is our goal right now since it is already in a state of hyper-vigilance.

As well, everyone can see (especially me) what needs to be monitored and ensure that those problem results are routinely rechecked.   

Taking a step back and looking at how we were handling things at home and at doctor's appointments I realized that everything was happening TO Leah.  But she really wasn't an active participant and amazingly she didn't really have a good grasp on what was actually going on with her!  That one really shocked me!  How could she not know??  But then I gave my head a shake and realized she is only 8 and I can't just assume she would understand all of this.  I guess that it is a testament to how much she trusts us that she hasn't really questioned any of it.

As such, we have been encouraging her to take a larger role in her care.  I am encouraging her to be a more active participant in her appointments, to speak for herself instead of just pointing at me to provide the answers.  She fills out a daily chart outlining how she feels, what her symptoms were that day, rates her day based on a smiley face scale and even gives me a brief description on the back if something abnormal occurs.

SCHOOL
On the school front she has been doing very well.  Still missing a larger number of days due to either illness or doctor's appointments than I would like, but she is managing.  Her teacher says that she very smart and can pick up new concepts very quickly which is what is allowing her to catch up on missed school work.  Without that ability, she would be very behind.  However she is very very VERY disorganized.  She does well within the structure of the classroom where there are clear rules and schedule.  But give her any sort of freedom and she can't function.  She easily becomes overwhelmed and at times reduced to tears.  I am currently struggling with how to help her with that.  Her agenda doesn't really do it for her and I don't want to overload her with charts and check lists.  Anybody have advice?

MEDICAL
Recently Leah was seen by her new family doctor, a Neurologist and an Endocrinologist.  The outcome of all of that has been a couple of referrals to other hospitals.  In the coming months she will be seen at both Toronto Sick Kids and London Sick Kids.  She has a follow up MRI before the end of this month and an Ultrasound of her thyroid pending.  We will be gradually increasing her dosage of Kepra as she is still having frequent events (as the doctors call them) and her dosage was still at the "sub therapeutic level".

At the endocrinology appointment the doctor felt nodules in her thyroid and wants to do the ultrasound to investigate those as well as create a baseline to track any changes.

There is still some question in the minds of those doctors if the diagnosis given a Mayo Clinic is correct.  I am finding this increasingly frustrating.  I can't decide if it is ego, pride or just spitefulness that is causing their hesitancy or if there is a true doubt.   At least the psych consult is off the table now!

With regard to how she is feeling, Leah still is troubled by sleep disturbances which may or may not be seizure related.  She is frequently up during the night but doesn't remember much of what has gone on.  She comes to us seeking comfort which means none of us are feeling rested!  :)

Her mornings are still difficult and we have to be very firm with her and harden our hearts to some tears.  Not everyday thank goodness, but at least a couple times a week.

During the day she is still dealing with her sudden falls and dropping things.  Unfortunately this means her time on the monkey bars has had to be curtailed as whenever one of the Negative Myoclonic Seizures occurred, it caused her hands or legs to release and she was falling on her head!  She is still having her rest period at lunch time which I firmly believe is the reason she is able to stay at school most days.

In the midst of all of this, we have had a great month as a family.  Halloween was fun despite the rain and the kids are really looking forward to our annual trip to Great Wolf Lodge tomorrow!

I did however forget to pack the donations for Ronald McDonald House and Ronald McDonald Family Room into the van on our last trip to Hamilton, so for those of you who had sample sized toiletry items to donate but hadn't got them to me yet THERE IS STILL TIME!  :)  For those of you who have already gotten them to me or promised to do so THANKS SO MUCH!    I know they will be greatly appreciated by the families that will use them.

Gettng Ready to Leave

My mother drummed this sentiment into our heads as children.  With this in mind I will just give you the facts of our last days at McMaster.

Sunday afternoon we were surprised to see two Drs. from Infectious Diseases.  A medical history was taken and then they conferred.  Their opinion was they were 99.9% sure that she did not have Lyme Disease or any other Infectious Disease and a lumbar puncture was not necessary to support that decision.  In their minds it is a open and shut case.

Monday morning came and with it a change of on-call Neurologists, we finally saw the neuro that we regularly have our appointments with.  He had been in contact with the other Drs throughout the week and they had come to the conclusion that all we had managed to capture on the monitors was "a whole lot of normal".  All they could conclude was that her minor events did not register on the monitors and she had no episodes of sufficient intensity to review.  As usual, the enigma that is Leah, has left her doctors baffled.  Their parting words carried a suggestion of a pediatric psychiatrist to assess stress levels as stress can do many things to a body.  With that, we were discharged.

Normally such a suggestion would have incensed me, but I had been expecting it.  In speaking with other parents who have been seen by this team, it is a very common "go-to" diagnosis.  When they can't figure it out, it must be psychosomatic.  And as a side note, anyone that truly knows Leah knows that she is so laid back and relaxed, that the idea of stress induced symptoms is laughable.

The six days since her discharge have been a whirlwind of activity.  Losing an entire week to the hospital admission had created chaos at home and in our planning.  Last minute errands such as getting her passport, packing, getting the household stocked up and ready for us to leave, doctor's appointments and finding time to spend some quality time with the other kids before leaving again; have all managed to suck up every available minute.

We leave the house tomorrow morning around 4am.  We board the plane at 6:35am and arrive in Minneapolis at 8:15am  Central Time.  We then board a shuttle bus to Rochester and will arrive at the Mayo Clinic around 11am.  Then the real adventure begins!

I am bringing our laptop and plan on updating as new information becomes available.

Before we leave, I have a message from Leah to pass along.....

Update on McMaster Stay

We have been at McMaster for a week now, still no real noticeable episodes or events - noticeable meaning can't be tracked by the VEEG.  Unfortunately, this is a very unrealistic setting for her and does not provide the external stimulus usually required to "set her off".

We are having trouble with the VEEG unit, she can no longer unplug from it to use the washroom because it won't reconnect properly so we now have a commode chair in the room with us.  The test is only designed for 4 days, so we are having trouble with the electrodes on  her head.  Between some sweating and her natural body oil accumulation over a week, the adhesive is starting the come away; this causes interruption in the readings and therefore is not a good thing.  So I have re-wrapped her head a couple times, the first time, it eased it's way up and off.  The second time, I used a lot more gauze and tape, and to ensure it really stayed, I also wrapped it up and over her head and under her chin!  I don't want us staying over the weekend to be wasted because of faulty readings!

She has had an ECHO, ECG and has the holter monitor on.  We have had a consult with a Cardiologist and at this point she doesn't believe that there is any cardiological issues.

Leah has been a very lucky girl, she has been visited by her best friend twice!  Megan came again today to visit and she brought her sister.  They are having a wonderful time playing board games, being silly and just playing.

Her daddy has come to stay overnight, her siblings have come for a visit and the girls are staying with me at Ronald McDonald house so they can spend some time with her every day.  Even her Auntie Anne came for a visit and to spend the night with her.  That was a real treat!

 Going forward, there has been some discussions regarding plans for Monday.  When Paul stayed with her, he spoke with the on-call doctor and requested a repeat Lyme Disease test, a follow up MRI and another look at MS.  It sounds as if we will be getting a visit from and Infectious Diseases Specialist, a follow up visit from the Cardiologist and the possibility of a lumbar puncture.

Leah's McMaster Stay

I am not sure if it is coincidence or due to Leah's media attention, but tests that were going to take months to arrange are happening this week.  Leah and I have been at McMaster since Sunday night.  She is currently hooked up to a VEEG or a Video ElectroEncephaloGram.  Unfortunately, she has not seen fit to grace us with an episode of any consequence.  Of course the set up is working against her.  She is confined to bed in a climate controlled room.  Her biggest stimulation is when she is beating the pants off me at Snakes and Ladders.  (I should never go to Vegas, the dice and luck are not on my side!)  We are still waiting to hear when she will be getting her Echocardiogram and wearing the Holter Monitor again.

The doctors were hoping to capture at least two episodes on the monitors, they have been able to watch one tiny one - basically she was very cold, dizzy and blurry, but still conscious, speaking and aware.  It was so minor that she didn't even need a nap afterwards.  They took a quick peek at the recorded info but nothing jumped out at them as registering abnormal brain activity or even abnormal heart activity.  It will all be downloaded on a daily basis and then "read" by an expert.  The final report will be available in about 2 weeks - but I am not holding my breath!

On the bright side, they are treating us very well, the food is good, the nurses and support staff are fabulous.  Since she can't leave her bed the Child Life staff have been coming by to see her a couple of times a day to ensure she has enough to keep her busy. Hospital volunteers will even come and sit with her for awhile. Thanks to them I got to have shower and throw a couple of things in the washer without feeling like a bad mother for leaving her alone.

Did you know that Ronald McDonald House via the RMHC Family Room also provides basic toiletries and laundry facilities for parents staying with their kids!?!?!  How awesome is that?  Need a shower but forgot to pack things like shampoo, conditioner and soap - never fear, the volunteer staff simply pull out a big container of hotel/sample bottles!  Running out of clean underwear and need to wash a couple of things, no worries, throw them in the washer!



So if you are out shopping and happen to run across a fabulous deal, keep the Ronald McDonald House and Family Room in mind.  They have a Wish List that they keep up to date.

And did you know that Julia's Run for the Cure will be taking place on Merritt Island on July 29th?

Join us at Merritt Island in Welland, Ont. on July 29, 2012 to run or walk 5km in memory of Julia D’Innocenzo. Julia suffered from Leukemia, and on September 12, 2009, after several drug treatments and a brave 11-month battle, the “Froggy Princess”  left us for a better place. The goal of Julia’s Journey is to celebrate the life of a hero, as well as to support the charities that were helpful to Julia and her family during her illness.

Ronald McDonald house has been such a blessing for her family, ours and so many others!

No News is NOT necessarily Good News.

The old adage "No news is good news", doesn't always apply.  In the case of this blog, no news just means I am feeling too defeated to type the same thing over and over again.  

Our much anticipated and long awaited trip to the Endocrinologist was a bust.  After doing yet another hour long medical history and ANOTHER full physical, all the same questions and answers, all the same physical checks (down to 49lbs! crap!), tests and responses, we got the same answer as always...."We have no idea".  or "There is definitely something going on with her, but it isn't something that falls within our specialty."  or in this case, "There is absolutely no hormone in the human body that can cause the types of issues that Leah experiences."  

As a bonus, they agreed to do some blood work, to repeat it every 6 months and to continue following her for the next couple of years to see if anything develops -  but basically they threw up their hands and shrugged.

Based on bloodwork and medical history they ruled out Ehlers-Danlos Syndrome, Parathyroid disease and Fibromuscular Dysplasia - I had added these three to my list due to recommendations and research.

For Leah it is the same old thing - usually misses at least 2 days a week of school, the cooperation at the school is still less than desired but we are at lease getting the bare basics of what we requested.

We are struggling so hard to find a balance for Leah.  If she does "too much" at night, she doesn't have the reserves to make it to school the next day.  Currently, too much amounts to a 30min swimming lesson and 20-30 minutes in Games Galore (running, playing games in the YMCA gym) on Monday nights - it doesn't even push her bed time back, but it is too much.  I don't think she has made it to school on a Tuesday since Christmas!  If she plays outside "too much" after school, she doesn't make it through supper and may or may not make it to school the next morning.  She already misses her outside playtime during lunch at school while she is taking a nap, and soon will be kept inside the school on the hot/humid days.  She had to give up gymnastics, she only goes to the house of her best friend to play, no other play dates, she has to stay within sight of the house or with an older sibling at all times.  We are already (hotly) debating letting her go on the family vacation to the cottage this year - my instincts say no, but my heart says yes.  

When does she get to just be a kid and have fun?

Following along on that thought, I came across an excellent story written by a lady with Lupus - it is about how she finally stumbled upon a way to describe what having a chronic illness is like.  It is called "The Spoon Theory"

                                                                

It has spread like wildfire among the disease/syndrome forums.  I am in complete agreement with her explanation as it exactly illustrates what Leah goes through.  As such I have added this photo of Leah.  She is now an official "Spoonie"!

Please keep Leah in your thoughts and prayers as we await a decision from the Mayo Clinic.  A month or so ago, I stumbled upon a chain of links while doing research that led to a Mayo Clinic Self Referral form.  Feeling a little foolish and a whole lot nervous, I filled it out and sent it off.  I sent along the introductory letter I have created and keep up to date with all of Leah's symptoms and medical history to give to each of her doctors.  A couple days later they requested copies of Leah's medical records, scans, MRIs, doctor's letters, THE WORKS!  I organized all that info and sent it off.  A couple days ago I was notified it is being reviewed by a doctor and they will decide if they want to see her.  They have an entire department set aside to deal with "International Patients" and really make an effort to keep us informed of where we are in the process.  My understanding at this point, is that if they feel Leah could benefit from their expertise or that THEY could benefit from diagnosing, researching and treating Leah, than we would go to Minnesota to be seen by some of the best medical minds in the world!  Since she seems to have stumped the ones in Ontario, lets move onto the ones in Minnesota!  

Neurological Differential Diagnosis

I feel like I am living an episode of House.

You know the part where House and his entourage sit around the office throwing out possible syndromes/diseases/disorders?  That is called a "Differential". And you know the part where he chooses one syndrome/disease/disorder that the others don't agree with?  Well that is kind of what happened at McMaster.

We got to McMaster only to find out they had mailed us a postponement letter pushing Leah's appointment back to the 19th.  Obviously we didn't get that letter so they agreed to see us anyway.  They went off in search of a Resident  who didn't have a caseload that day and found us Dr. Fudge.

Dr. Fudge and his student did a very thorough history and physical exam.  When I say thorough I really mean thorough - it lasted for almost 2 hours!  They asked tons of questions, and did a neuro assessment on Leah.  Then they left to go discuss it with Dr. Callen and his team. 

We could literally hear them doing the differential, and we saw them looking at her MRI.  Then they all toddled back into our room and began the explanation of their thought process and gave us a "working diagnosis".

According to Dr. Callen he would be "flabbergasted" if the tests he has ordered for Leah come back as negative for Narcolepsy with Cataplexy

So our working diagnosis is Narcolepsy.  Strangely enough, it was mentioned in a couple of comments from a reader at the very beginning and was discarded as I didn't feel Leah met the criteria.  I still don't think it really fits as so many of her problems are not included in the symptom lists.  No matter, regardless of how sceptical I (and others) may be, we are just so darn glad that we are moving forward.


They have sent of the paperwork for the government grant necessary to do the genetic testing in Boston.  This testing will tell us if she has the genetic form of narcolepsy.  They are scheduling a polysomnogram (PSG) and the multiple sleep latency test (MSLT). 

Basically those tests will tell us if she slips into REM sleep much more quickly than the norm.

They encouraged (can you believe it!?!?!) us to research Narcolepsy and become very familiar with it.  One of the first things we saw was the Epworth Sleepiness Scale   My mother and I score very high on it, so I guess a genetic link is possible (note to self: call the doctor for a sleep study for me!)


As well, he has agreed to do the test for Lyme disease!  He actually considered the probability of a positive finding.  You could see him thinking - he thinks like I do...rolls his eyes upwards as if he is looking at a mental chalkboard.  :)  He doesn't think it is going to show a positive result but he said it was a simple addition to the bloodwork he was already ordering.

So keeping with the "House" theme, I fully expect the tests to come back negative for Narcolepsy, and then they will pick something else to investigate.  And I am okay with that as long as they continue to investigate. And I know that at some random moment, Dr. Callen's eyes will gloss over and random thoughts and ideas will suddenly converge to give him the magical diagnosis that will set Leah's life back on the right track!

A Little Bit of Everything :)

Greetings Friends, Family, loyal readers!  No real updates today on Leah herself, but wanted to keep you all up to date on everything else that is going on with her.

ROM Update
As some of you may have noticed via Facebook, I got tired of waiting for the ROM to respond to my complaint regarding their treatment of us.  So I sent a more tersely worded email.

I am shocked and saddened to see that the staff at ROM have not yet responded to my email.  Your auto reply states up to 3 days, elsewhere on the website it was stated up to 7 days.  It has been 9 days and I have yet to hear from anyone.

 

Our friends, family and readers of a blog we have created for my daughter were quite distraught to hear how callously we were treated.  I had hoped to update them with an explanation but it appears obvious to all of us, that it matters little to you how situations such as this can affect the enjoyment of one family and more particularly the enjoyment of one very sick little girl.

 

I am truly disappointed, we had expected better from the ROM.

 

Kate Balint

 

Needless to say this got a response within 90 minutes.  From there things went very well.  It appears there is some sort of glitch with their website comments page - they didn't get the original email, but they know I sent one because I had the autoreply.  The woman I spoke to - the Head of Customer Experience, has begun to look into the incident, was very apologetic and understanding of our needs.  She has offered to purchase or rent a larger stroller/pushchair for kids like Leah who don't require a wheelchair but are too big for the umbrella strollers they loan out. 

 

All in all the experience taught me a few of things

• It is easier to take a stand for my daughter than for myself - usually I don't make complaints, write letters or cause a fuss.
• Taking a stand and making my feelings known, is not actually physically painful or emotionally traumatising!  Who knew!  I have been avoiding it like the plague for my entire life.
• I always knew the little phrase "If at first you don't succeed, try, try again", but I don't think I had ever put it into action in this way.  Between our struggles getting a diagnosis and now with the ROM, I have a greater appreciation for such a simple yet powerful little phrase.
• Mention that you have a blog - and watch how quickly things move along!  Again, the power of words!  :)

Referral
It is a long traumatising, aggravating, frustrating story - but basically Leah now has referrals to both the Neurology department at McMaster and at Sick Kids.  We have the appointment for McMaster on Wednesday (YEAH!) and Sick Kids is reviewing her file and we should hear from them shortly (we've heard that before!)


Neurology Appointment
While at McMaster Leah will be seeing Dr. Callen (click to see his bio).  

Is it okay to be excited(?) and nervous (nauseous) at the same time?  On one hand, we will be moving closer to a diagnosis which is good.  But on the other hand we will be moving closer to a diagnosis which is scary!  Once we have that diagnosis there is no more pretending that everything will go back to normal.  We will have to create a new normal for Leah and our family and I feel so unprepared.  

So I have been doing what I do best: RESEARCHING.  I started out with a 1 inch binder and have had to move up to a 3 incher.  My printer is gasping for a break and all the Internet browsing has introduced a few viruses onto my computer - thank goodness Paul is a computer genius!

My brain is overflowing with details, stats, acronyms and info.  Based on everything I have read (and by golly it is A LOT!), I have compiled a list of questions and things to discuss with the doctor.  

I have also created an overview of Leah and her symptoms with a timeline of her bloodwork results to give him.  I figure we have wasted a whole lot of time getting to this point and I really want to make this first appointment count for more than a meet and greet.

Normally I would have Paul, or my Mom come with us, just to have another set of ears.  Someone else to ask questions and to fill in the blanks when  I forget things later. (notice I said when not if...I know my weaknesses!) Unfortunately, the fates are working against me this week and everybody is busy, so I'm contemplating playing spy and taping a recorder on me (joking ?).  All humour aside, I am going to do my best to suppress my natural awe of doctors and attempt to take control of the appointment and steer it in the directions I want it to go and to take notes along the way.

School and Leah
Still an ongoing issue, she missed 11 days in November alone.  Her teacher finally went on her maternity leave so now she has a new teacher.  She has been filled in on the issues but doesn't seem to completely have a grasp on it.  To make things even more complicated the supply principal has been changed as well, so I have requested a sit down meeting with them both to review the protocol and update it as necessary.

She is occasionally wearing the pull ups when she feels it is necessary, and has disclosed to me that have been other occasions recently when it has happened but she was so embarrassed she didn't tell anyone.  My poor baby girl, my heart breaks for her little bits each day.  And yet, she is so stoic and matter of fact about all of this.  She doesn't whine or cry about missing out on things, going to so many appointments or having so many tests.  She makes me so proud and she makes me be stronger for her.

Alrighty, I think that is enough for today, if you made it this far thanks!  I have always had a writing/talking style more like making a short story long, rather than a long story short!

Keep the prayer coming and your fingers crossed that we have a great appointment on Wednesday!  I will update as soon as I can.

Thanks as always.

Wishing and hoping and thinking and praying....

Wishing and hoping and thinking and praying

This is the phrase that keeps going through my head.  Now I know that it is the opening line from a delightfully cheesy Burt Bacharach song, but it fits here too.

So much of medicine is waiting.  Waiting and ruling things out.  I realize that eventually, we will rule out most things and what we are left with is the probable diagnosis, but really, how comforting is that?

On Monday, Leah and I travelled to McMaster Children's Hospital again.  This time she was going for her second EEG.  We met with a fabulous technician.  She was so professional yet very kind, personable and put Leah right at ease.  She encouraged Leah to sleep if possible because the test can pick up some different information when the patient is asleep. 

First they created a baseline - she had Leah lie very still with her eyes closed for a while, then with them open and then closed again.  From my seat in the room, I could see the monitor and she had  very rhythmic readings.  Then they did the 3 min HVPT - Hyperventilation Provocation Test , after that test, even when she did fall asleep, her patterns never returned to a nice rhythmic pattern.

Now I don't pretend to understand what I saw, but I thought that it was interesting that after the HVPT was done, there were noticeable changes in her brain activity.  Even while she was asleep there were sudden and large spikes in activity. 

As always, the technician isn't allowed to tell us anything.  She said a neurologist would review it and a report sent to our paediatrician.  We can expect the report to hit his desk in about a week.

While we were at McMaster, I stopped by the Neurology department to put another bug in the ear of the secretary.  She now has a sticky note with Leah's name on it attached to her monitor.  It is to remind her to continue to search out which doctor is reviewing her file.  Not that I was told this, but I get the feeling her file is lost amidst paperwork on some doctor's desk.  So, I will continue to call and stop by until someone tells me she has an appointment!

On a positive note, we had a great weekend full of family fun.  Saturday we went to the Pied Piper Parade - a family tradition!  Leah was a beautiful bride and had lots of fun on the play activities in the park afterwards.  On Sunday, Leah had a wonderful time at her BFF's house and then we went to our local pumpkin farm for a great outing on a beautiful day.  Fun was had by all and we all returned home tired, but happy.

So until we find some answers, we will continue Wishing and hoping and thinking and praying

Overwhelmed

I am humbled and overwhelmed by the outpouring of support, love and information we have received in such a short time.  The blog has almost reached 650 views!  So many more brains are working on this problem and I appreciate everyone who has taken the time to read and post.  To think that in everyone's incredibly hectic busy lives, time was put aside for a little girl that most of you have never even met, thank you, thank you THANK YOU!

As I said, we have received so many tips, advice, links and information.  I will be spending today doing more research and compiling a list of items to take up with her pediatrician.

On the good news front, I used my charm and determination to get her an appointment at McMaster with the Hematology department.  They are the doctors that look after her older brother who has an un-named bleeding disorder caused by the platelets not being sticky enough - therefore causing an extended bleeding time, easy and bigger bruising and weak clots that can easily break away.

Anyway, I practically begged them to see her and they agreed.  She will be at McMaster bright and early on Wednesday.  If all goes well, and my husband is insistent and charming enough, maybe we can cut through some red tape and find a back door to the neurology department.

Keep you fingers crossed and the information coming!

Kate and Leah