February

Not really much to update on.

Upping Leah's seizure medication for her night time dose has made a huge difference.  She is sleeping better, which means that we are no longer dealing with her sobbing every morning before school.  It isn't that she didn't want to go to school, but that she just felt so darn tired, sick, blurry and dizzy every morning.

Leah's appointment at London's Sick Kids was about what we expected.

They are not willing to acknowledge the diagnoses given by Mayo Clinic.  They will not consider further treatment until they can be confirmed in Ontario.  So very, VERY frustrating!  So for now we continue to treat the symptoms instead of the cause.

We have a week long inpatient admission to look forward to in April.  She will be going in for another  Video EEG.  But the biggest difference is she will be able to be mobile for this one.  In fact they are encouraging her to be since what they are really trying to capture are the moments when she suddenly falls (Negative Myoclonic Seizures) - they need to see exactly what is happening in her brain when that occurs.  She will be up playing in the playroom, doing school work in the classroom and just walking around.  We will have to wean her from her medication prior to the admission so the weeks leading up to the VEEG might be a little yucky.

No forward motion on the biopsy yet, I will be speaking with the doctor on Monday to get that sorted out.

Next weeked Leah and her sisters have been invited to participate as background actors on a film shoot.  One day they will be in a semi-formal dance scene - so lots of girly dresses, pretty hair and sparkles, and the next day will be gym and classroom scenes.  We are turning it into a "Girl's Weekend" and staying in Toronto at a hotel with a pool (I promised the pool part!  Come on Priceline....get me a good deal).  They are so excited!  I am sure we will have some pictures to share from all of that.

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.

Mayo Post-Mortem

It has taken me almost a week to settle back into regular life and reflect on all that happened while we were at Mayo.

Let's start with our overall experience - amazing!  In every way.  The hotel stay, Ronald McDonald House, every staff person, volunteer or nurse we saw - all amazing!

The doctors - Each doctor we saw took the time to review her history and come to the appointment informed but with an open mind.  We weren't rushed, they took the time to ask and answer questions, each doctor at one point or another consulted with a colleague on our behalf.  Each discussed with us the tests they wanted to order, what they expected the results to be and why they hadn't ordered others.  We were active participants in each appointment.  Our concerns were heard and addressed, our opinions and thoughts were valued and our hard work and research were appreciated.

I have already had one telephone conversation with a doctor since we have been home and have a few more scheduled.  They are quite interested in being kept up to date on how she is doing.

The results - We are still waiting for a couple of bloodwork results to come back. The results that we are waiting for will tell us if there is one or multiple  autoimmune issues affecting her.  With autoimmune disorders, you can only treat the symptoms so we have gone ahead and started the treatment for Hashimoto's Disease and the seizure disorder.  Leah started the medication on Friday and so far seems to be doing well.  We haven't seen any of the possible side effects, which is very comforting.

We have ordered her a WobL watch, it is made specifically for kids with medical issues.  It has multiple alarms to remind her to take her medications, the alarms can be audible or vibration.  I have read some very good reviews about it.

We will also be speaking with the school to obtain the necessary paperwork for the No Child Without Program for a Medicalert bracelet.

We have been to see her pediatrician and he has agreed to re-write her prescriptions and order her follow up bloodwork.  So that is a big relief.

Currently Leah is enjoying her time at the cottage with the rest of the family.  I get updates throughout each day about how she is doing and Paul is keeping a journal to track her health and episodes.

Final Tally - we haven't gotten the final bill yet from Mayo, but I kept a very, very close eye on our account while we were there.  The poor ladies in finance knew me by name!  We are still waiting for the doctor's fees to be added to the bill.  But at this point, based on the estimated amounts, we will come in under budget for the trip!  

A Weekend Away from Mayo

Hi everyone!  And a special hello to the staff and customers at Kay's Korner Variety!  A little bird told me our updates are being shared at the store!  Thanks everyone for your care and concern.

At Leah's appointment on Friday we learned we were being booked to see a Hematologist.  It would seem that Leah has also been experiencing an ongoing cycle of low neutrophils.  Her neutrophil level this week was in the 800s.  Normally it should be over 1400.  Looking back over the last 3 years of bloodwork we had on hand, a pattern of low and then normal levels can be seen.  This is called Cyclic Neutropenia.

My understanding at this point is that all three issues - Neutropenia, Negative Myoclonus and Hashimoto's can be attributed to autoimmune issues.  When I asked the doctor if they could all be cause by the same issue, I was told it was possible but not probable.  Now personally, I can't wrap my head around Leah have three separate and distinct autoimmune disorders.

On one hand, I am extremely glad we didn't make the trip all the way to here to be told "there is definitely something going on but we don't know what".  But on the other hand, being presented with three test verified disorders is overwhelming and a little daunting.

So with that in mind, Leah and I played hookie this weekend, we rented a car and drove to Minneapolis.  We spent Sunday at Nickelodeon Universe and Monday at the Sea Life Aquarium.  Leah had a great time  at Nickelodeon Universe, it is perfect for someone her size, she got to ride on every single ride - and some of them made the adults scream!  :)

 But I think she may have overdone it on Sunday.  She spent our entire trip to Sea Life and the Mall of America today in a wheelchair, curled up in a sweater and under a blanket.

She has been having some small episodes - I guess I can officially call them seizures now.....throughout the week we have been here, today's we can classify as an average one.  She was able to stay awake, but not as engaged and definitely not showing the enjoyment she normally would have.

Tomorrow we speak with hematology and find out what Cyclic Neutopenia means for Leah.  And, if all goes well,  we will be heading home in the evening!

Day 3 Update - Neurology

Our third day here was every bit as wonderful as all the others.  We moved over to the Ronald McDonald House and settled in.  It is a wonderful place, the people are kind and compassionate and have found the jobs they were meant to be in.

BTW....You can really tell you are in the states when you see signs stating guns are not allowed in the building!  That catches me by surprise every time!  :)

Leah's neurology appointment was 2 hours long!  He had reviewed her entire chart the night previous and was well prepared to speak with us.  He took a very in depth history, asked lots and lots of questions and then examined her.  He even sat back and very patiently listened when Leah was telling me the ENTIRE plot line of the chapter book she had been reading!

He began to develop a diagnosis and then called a colleague and had a telephone consultation with her.  They both agreed that what she exhibits is Negative Cortical Myoclonus  - which basically means a seizure disorder that presents itself as a sudden unexpected relaxation of the muscles; as opposed to a sudden contraction of the muscles as is stereotypical of a seizure.  Cortical meaning it takes place in the cortex.

The area that the seizures would be occurring is deep inside the two sides of the cortex which is notoriously  very difficult for eegs to pick up readings on. If my understanding is correct for Leah it would be effecting the purple, red and yellowish areas.  

The good news is the MRI showed no further white matter changes, the one area she had remained the same and there is no evidence of changes in the areas the seizures are occurring.

She has been prescribed the anti-seizure medication Keppra, we will trial it for 1 month and see if she improves.  The neurologist has requested we keep in telephone contact with him so he can follow her progress.  He will be sending his recommendations on to her doctors at home as well.  As a precaution he has ordered a set of bloodwork to rule out an autoimmune issue causing the seizures but he is quite certain that it will come back as negative.

Is it great news?  Epilepsy?  Not great, but totally able to deal with it.  She would need to be on medication for the rest of her life, have frequent blood work to check the levels of medication in her system and make changes to it as she grows, hits puberty etc.  It will impact her for ever, and she will have a hard time making people understand because it is the opposite of what people expect.  But keeping things in perspective, when we are in the children's clinic and see the spectrum of disorders and diseases the other kids are coming in with, I am grateful that epilepsy is all we have to worry about.

So now we are heading back to Pannekoeken for brunch!

Leah wants us to split one stuffed with bacon and one stuffed with chocolate chips.  Not sure if my system can handle that in one day, but I feel like celebrating so I will pack some Tums and let her go crazy!  :)

After that, we head over to the overseeing Dr. for our follow up appointment.  There we will get her opinion on the blood work that was done and find out if we also have to face a lifetime of synthetic thyroid medication.  Again, in the grand scheme of things, more bothersome than anything and completely manageable., We will also find out if we have to stay longer or try and make arrangements to come home early.

Update to come later one!

Day 2 at the Mayo Clinic

Our second day at the Mayo Clinic was just as good as the first.

Leah had a round of blood work first thing and then we went straight over to her Autonomic Testing.  This testing allows us to see if her Central Nervous System and her involuntary reflexes are working properly.  This test rules out Postural Orthostatic Tachycardia Syndrome (POTS).  I was able to be in the room with her throughout the testing (which was very cool!) and she had no issues with any portion of it.  Her heart rate and blood pressure remained stable, she had no symptoms of her episodes and her CNS responded normally throughout.   So another thing to cross off our list!

Next we headed to MRI.  Leah breezed through her last MRI and so she had no hesitation about heading into this one.  In fact, she was so calm that part way through it she fell asleep!  I am anxious to get the results back on this to see if she has developed any more White Matter Changes or if the one noted previously has changed at all.

The super awesome cool part of all of this is, Leah has an online patient account with Mayo.  When test results are ready, they are immediately posted to this account!  The Doctor's notes, clinical notes, medication history, immunization history, medical records etc are all immediately updated within this online account.

So Leah's bloodwork results are already posted, based on those and her symptoms is seems like a diagnosis of Hasimoto's is coming.  We will find out more on Friday afternoon.

Today we are packing up and making the move to Ronald McDonald house!  This will be a big relief and money saver for us.  We will actually end up being a little further away from the hospital but shuttles run about every 15 mins, so it really won't be that big of a deal.  

Leah also has her Neurologist's appointment this afternoon - we will update afterwards!

Update from the Mayo Clinic Day 1

Hello from beautiful Minnesota!  I wish we were here sightseeing and heading out into the wilds because it all looks so wonderful!

We had our first appointment today, we saw the doctor that will be overseeing her case.  She is really nice, and we did a very thorough and comprehensive medical history and physical exam.  

We did agree to cancel some of the tests that were repeats or deemed unnecessary after our consult, so our estimate has dropped - thank goodness!  Now we will just have to wait and see what else gets scheduled based on bloodwork and the remaining tests.

During the physical exam she noticed goiter and has suggested Hasimoto's - she is curious why, based on Leah's history of elevated thyroid related tests results and the goiter why Endo would have said no endocrine involvement - also questions the specter of possible future autoimmune issue as suggested by the Endo back home.

Also suggests a possible Migraine variant as reason for the "episodes"- we have kept the Neuro consult, he is a sleep specialist as well and might have some greater insight into the overwhelming tiredness.

We are now #6 on the waiting list for Ronald McDonald house, possible to move tonight, more likely tomorrow, next day at the latest.  We are paying the reduced compassionate rate of $60/night at our current hotel and have a fridge but not a microwave. There is a small convenience store nearby but no grocery store.  They run a shuttle to Walmart on Wednesdays, so we will head over tomorrow to pick up some groceries and fresh fruit to keep in the room with us.  

We met with the Concierge Service they offer for International patients and we now have a list of low cost things to do in the area to keep her busy,  I think we are heading over to the playground/pool tomorrow afternoon after WalMart.  There is a pool at this hotel so we will be up there tonight and then have an early bedtime.  Tomorrow's first appointment is 730am.

Meals are a little difficult as it is a rather artsy downtown area without fast food joints :)  There are pubs, wine bars and steak houses ($$$$$) but having trouble finding small restaurants or diners.  We found a nice little dutch place (Pannekoken! - baked and stuffed pancake!) but can only eat there so often!

The hospital is amazing!  There is no such thing as business casual - even the volunteers wear ties.  Clerks at the medical desks wear black pants and crisp light blue button down uniform shirts.  Everything is handled in an orderly, efficient and patient centered manner.  Every single person we have come in contact with have been helpful, kind and polite.  We have heard a few people with the classic stereotypical Minnesota accent but not too many.  :)  

On the whole, other than the very long and involved process of getting through the admission and payment process this morning, things are going very well!  Leah is in good spirits and feeling good, she enjoyed the flight and tolerated it well.

Well I have obviously spent to long on the computer, I am being pestered to head up to the pool!

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.....

The Benefit

In a word, the benefit was AMAZING!

I was having nightmares that no one was going to show up, that I would be staring at my family all night and we would walk away owing money instead of raising any.  I think that type of stress is normal for anyone planning a big function, but it was really starting to wear me down.

The day started early with errands, shopping for fresh items and cooking.  I was totally on schedule and just rocking in the kitchen when CHCH News called requesting an interview for the afternoon!  ACK!  Really there was no time for it, but how could I turn it down?  So, as wonderful as the interview process was, and as sweet and understanding as Lauren Pelley was, it totally messed with my entire schedule by about 3 hours!

But as it always happens, with a lot of hard work, and the hard work of others, everything came together in the final minutes before 7pm.  The prize table looked fantastic, the decorations were up, the banners were hung and the games tables were ready.

We don't have a definite number for attendance but I am estimating we had approximately 150 people come and go through out the night.  Not to mention the wonderful people who stopped by just to drop off a donation!

On behalf of Leah, Paul and the rest of our family I would like to express our gratitude to the following people:

The Celtic Club personnel were wonderful!  Thank you so much for all of your help and assistance.  We could not have been as successful without all of you.

To Scott Reid and Niagara Event Consortium, you did an incredible job with the music, thank you for volunteering your time.

To Jeremy and Chris from The Black Flies, the sets you did were fantastic and such a wonderful addition to our night, thank you for coming in and helping us out.

To our boys Christopher and Matthew, having you there, working so hard to help your little sister was wonderful, thank you!

Teresa, you rocked Crown and Anchor!  Thanks for running that for me the entire evening and all your help with set up.

Amanda B. - Waitressing may not be your career path but you are a pro at selling Jello shots!  Thanks for taking that job off my hands, you sold them all and that was excellent!

Andrea Hominuk - thank so much for helping us transport everything over, working on the prize table and running the Toonie Toss, your expertise and assistance was greatly appreciated!

Tammy Baker - The way you effortlessly coordinated all aspects of front door ticket sales was awe inspiring!  Being able to leave it in your extremely capable hands left me free to attend to the thousand and one little details that cropped up.  And thank you as well for coming early and helping to set up, assisting with organizing the prize tables and everything else you did!

Kris and Bernie Tessier - as always thank you so much for helping out in all the areas you do.  Bernie you ruled the poker table!  People didn't want to leave you, they were having so much fun!  And Kris, I truly appreciate the last minute run home and all the effort that you went to for us.  The Plinko game was a hit because of your wonderful influence!

To Anne and Amanda, I know you were run ragged and yet you still ended the night with big smiles on your faces!  If I needed help of any kind you were right there, anything you two could do to make my life easier, you did.  Thank you!

And to my wonderful mother Marty, you stressed and fretted right along with me, we drove each other crazy, but together we really made it work.  For everything you did to assist me in making the benefit a success I thank you from the bottom of my heart!

And of course, to everyone that took time out of their busy schedules to come to the benefit, thank you!  You all made it a resounding success and with your help we are so close to our fundraising goal!

Leah in the Media

updated to include CHCH news story

For those of you who have not yet seen the articles here are the links that I have been able to find

St. Catharines Standard
http://www.stcatharinesstandard.ca/2012/07/17/looking-for-answers-for-leah

and the Niagara Falls Review ran the same story
http://www.niagarafallsreview.ca/2012/07/17/looking-for-answers-for-leah.

and since I can't seem to find an online version of the story in the Tribune here is a copy (I hope it looks better on your computer than it does on my laptop screen! )

Niagara News in both St. Catharines and Welland will be printing their story in Thursday's edition.

I chatted on air with Tom McConnell on 610CKTB on Tuesday morning and we have just found out I will be chatting with the Giant FM morning show team on Thursday morning!  Good golly all this may start going to our heads.  What would my diva demands be probably something to do with chocolate, and Leah?  I think her diva-ness would show itself in requests for manicures!

Publicity for the Benefit

Leah's Summer Bash Fundraising Benefit has finally gotten some much needed publicity!  On Saturday afternoon, a reporter from the Welland Tribune came to the house for an interview and to take some pictures.

We talked about all the wonderful people and businesses in and around our community that have helped us and donated to Leah's campaign.  We talked about Leah's history and her struggle and how the wait times for medical services have impacted her. We focused on the positives of it all - the help we have received, the benefits of going to the Mayo Clinic and our plans to pay forward all of these kindnesses.

If we are lucky, the story will focus on Leah's struggle and the benefit and not on local hospital services.  Hopefully the surrounding newspapers will pick it up and run it as well, and *fingers crossed* that will bring more people to the benefit and/or the blog.  Keep an eye on the paper on Monday or Tuesday, that is when we were told to expect it to be printed!

Ten More Days!

10 DAYS!

 The Summer Bash Fundraising Benefit for Leah is happening in 10 days!

So much to do!

Here's another sneak peek a some of the prizes and auction items

•  -Niagara Helicopters gift certificate 
•  -Hotel and breakfast package 
•  -Restaurant gift certificates 
•  -LCBO gift card

Lots more to come, something to tickle everyone's fancy!

If you are interested in purchasing tickets, remember, there are 7 ways to get your tickets, contact me and I will help you decide which method best meets your needs.

The thermostat is rising inside and outside!

Silly little piece of trivia....the next time someone views the blog our visit counter and our fundraising total will be the same!

Couple of fantastic things to report on today

• Our middle daughter Hannah brought home from school (and forgot to give me!) some money raised by her friends Gina and Jenna C.  These two wonderful girls raised $55 for Leah - we are so grateful girls!  Thanks for your hard work.

• Kay's Korner Variety asked us to come and empty out the Loonies for Leah jar they had on the counter - once counted there was a whopping $203.97 inside!  Thank you to all the Kay's customers who have been so generous!

• We now have a 7th way to purchase tickets for the Summer Bash Benefit for Leah - Kay's Korner Variety at 150 Thorold Rd., Welland have very generously offered to sell the tickets for us, so if you need a loaf of bread, newspaper, some lottery tickets and a couple tickets to the benefit, drop by Kay's to scratch all those items off your shopping list!

Follow Up appointment

Well today's appointment kinda stunk.

We waited so long for today - 7 months!, gave up Leah's chance to go to the cottage with the family, pinned our hopes on getting some sort of new information, but nothing, nada, zip, zero, bubkis!

Basically we are back to square one, the neurologist is stumped, he is setting up appointments with a Paediatric Cardiologist, an ultrasound of her heart (echocardiogram), a week's hospital stay for a VEEG-Video EEG Monitoring, another kick at the can with a holter monitor, and possibly some Autonomic Testing to try and induce an episode.  When I asked how soon ANY of this was going to occur, he replied MONTHS and to schedule our next appointment for after all the tests and appointments were done.

So basically, the plan is this, wait, wait, wait, and wait some more.  Have a test.  Wait a bunch more, have another test, wait a whole lot more.  Meet with the Cardiologist to tell him/her everything we have told all the other doctors and specialists, schedule some more tests.  Wait, wait, wait, wait some more.  Have another test or two.  Make an appointment, wait for 3-6 more months, have the appointment.  All in all it will probably be another year at least before we see him again.

This is why it is so SO important that we get Leah to the Mayo Clinic.  In one week she will see doctors and specialists from a variety of disciplines, she will be tested in so many different ways, results read and acted on immediately, our scheduled appointments adjusted as needed to see who we have to see while we are there.  In 8+/- days we can accomplish what it will take months or years to accomplish here!

Benefit for Leah Update

Only 18 more days until the Benefit!  So little time and so much to do!


The tickets are out in the community getting sold!  Thanks to everyone that has already purchased their tickets!  There will be a limited amount of tickets available at the door, so please purchase your tickets in advance if possible.


Today Leah and I drove around the region doing "Benefit" stuff.  We picked up the newly printed tickets and delivered them hither and yon.  We gathered gifts and prizes from many generous businesses, we purchased the 50/50 tickets, the beverage tickets and other necessary items for the big night.

******SNEAK PEEK ****** 

two prizes that are up for grabs the night of the benefit

• for the guys a gift certificate for a detailing package courtesy of Henley Honda valued at $250!  
• And for the ladies.....a Coach purse valued at $399!  

Lots of items to pique your interest, keep an eye on this blog for more!


Remember, there are 6 easy ways to purchase your tickets

• Tickets can be purchased for $10 each by using the Donate button at the top right and putting in the message section how many you would like, we will have them waiting for you at the door the night of the fundraiser. 
• You can message me here via the blog and I will arrange to get them to you
• Via the facebook page at www.facebook.com/LookingForAnswersForLeah
• You can contact me via email at katebalint@yahoo.com
• In person from any of our friendly helpers selling the tickets out and about in the community
• At the door, the night of the event

If anyone would like to take some tickets to sell to their friends and family please message me, I would be very happy to drop some off to you! 
 

FUNDRAISER TICKETS!

The tickets have gone to the printer and we are so excited!  Aren't they beautiful?!?!?  The wonderfully talented people at Chimpanzee created this for us and I just love it!  

Special thanks to The Printing House St. Catharines for rushing the printing for us.

There are SIX ways to purchase tickets to meet your needs

• Tickets can be purchased for $10 each by using the Donate button at the top right and putting in the message section how many you would like, we will have them waiting for you at the door the night of the fundraiser.  
• You can message me here via the blog
• Via the facebook page at https://www.facebook.com/LookingForAnswersForLeah.
• You can contact me via email at katebalint@yahoo.com
• In person from any of our friendly helpers selling the tickets out and about in the community
• At the door, the night of the event

Kindness of Strangers

I have always believed that everything happens for a reason. From every experience you receive at least one life lesson.  The biggest lesson I have received in the last month is about the kindness of strangers.  I know I touched on it in a previous post, but it truly has been a mind blowing, jaw dropping, eyes popping out of my head, emotional roller coaster.  

Do you remember the game Six Degrees of Kevin Bacon?  Well, what we have been experiencing lately is Six Degrees of Leah Balint.  It was through those degrees of separation that today's amazing events occured.

Today was the 2nd Annual Alivia's Rainbows Lemonade Sale.  Alivia's Rainbows is a charity started by Craig and Chantal Vanderklei in memory of their beautiful daughter who passed away from cancer. This charity helps support local pediatric oncology patients and their families with off-setting costs that may be a burden for families going through a difficult time.

This year, Craig and Chantal Vanderklei and the rest of the Alivia's Rainbows team very generously offered to share the proceeds of the Lemonade Sale with Leah.The Vanderkleis are close friends with the Tessiers.  The Tessiers are close friends with our family.


Today Kris Tessier,chose to spend her birthday holding a charity fundraiser. She and her family had spread flyers around the neighbourhood, the schools, spread the word among friends and team mates. They set up a table in their driveway, some comfy chairs for chatting, emptied out the lemonade freezer section at the local grocery store and settled down to sell some lemonade.  Well they didn't just sell some lemonade, they sold LOTS of lemonade to some very very generous and kindhearted people.  Just as people at the garage sale gave more than they had to, or stopped by just to donate, people came for no other reason than to make a donation.  They made time in their very busy days to drive out of their way to make a donation for two little girls that many have never even met!

And can you believe, that today our fundraising thermometer jumped by $300 due to the Lemonade Sale!  Thank you to everyone that came out to enjoy some yummy lemonade and great conversation.  Leah and our entire family greatly appreciate it!  To the Tessier and Vanderkleis families, I can not say thank you enough.

In another fabulous example of Six Degrees....a father of a friend of a daughter of my friend came to the sale. He was already familiar with Leah's situation, he had already read the blog (thank you )  and he came with one purpose in mind.  You see, earlier, he too was sick and searching for a diagnosis without luck.  He too had decided that the Mayo Clinic was going to be his chance for a diagnosis.  Amazingly, before he made the trip, he found the answers he needed.  Even more amazing, he and his family decided to donate the money he had put aside his trip to Leah!   I don't have the words I need to make you understand how grateful we are to this family.  When I received the news this afternoon, I was just like the people you see on TV...I was crying and my hands were shaking and I was speechless.  To the "M" family, please know we will pay this kindness forward in as many ways as we can.  Your generosity will never be forgotten. 


So kind readers, your life lesson of the day is to never underestimate the kindness of strangers.  Whether they be separated from you by 2, 6 or 60 degrees, their kindness will always surprise you!

Leah

Leah is many things; a daughter, sister and best friend.  She is a loving granddaughter and the annoying little cousin.  She is my Lou-Lou Belle, her daddy's Little Rose, Doodlebug to her older brothers and Yee-ah to her little brother.

Leah is a gymnast who can no longer train, an above average student who can barely make it to school, Leah is a patient who baffles her doctors.

She is sweet, quirky, kindhearted, quick to love and slow to anger.  

Leah loves having her back tickled, a good cuddle, great books and girly movies.  Her favourite colour is gold but also loves anything pink or purple.

She hates needles, bees, soup, applesauce and mushrooms.

Leah is my baking helper, a great swimmer and a trampoline fanatic.  Her side of the bedroom is never clean, her bed is filled with favourite toys and possessions, her desk is covered with drawings, colouring books and search a word puzzles.

She loves to wear dresses, but also enjoys rough and tumble, she has holes in the knees of most of her tights, leggings and pants.

Leah plays hard when she can and mourns for it when she can't.


Leah has an infectious giggle, a quick laugh and a silent cry that can break my heart.


In all things she is brave and strong, but she is also only 8 and is scared of the unknown.


Leah is all of these things an so much more.  But in some ways, over the last couple of years, she is less.  Her smile is not always so quick, she is forgetful, confused, so easily fatigued and therefore not as engaged in her own life.  And while she doesn't complain, she is missing so much of what it means to be a normal child, her world is shrinking and her experiences are being limited.


My greatest wish is the Mayo Clinic will find that magic answer for us, that when we leave, we will take with us the knowledge that will enable her to be a normal little girl again while she still is a little girl; time passes so quickly, and it is something she will never get back.  

Garage Sale an AMAZING Success!

To every single person who stopped by the garage sale yesterday!  So many people asked about Leah, paid more than they had to, dropped extra money in the Loonies for Leah jar, took the flyers and cards to pass along to their friends.  And to the wonderful people who couldn't find anything to buy but pressed money into my hand or into the jar to help Leah, your kindness and generosity is greatly appreciated!

To all the the people who donated items for the garage sale; whether it was household goods, books, tables for it all to go on, baked goods, hot dogs and condiments: some of you friends or family, some of you I don't even know.  The generosity you have all shown is humbling and overwhelming.  The stunning success of the garage sale could not have happened without you!

Special thank yous to some very special people who went above and beyond to help us out:

Peggy - for all your hard work before we set up, for the loan of the tables, for your help picking up items, for baking the dog biscuits, for the sorting and arranging you did and your help at clean up.  For taking the time to take pictures for me and putting them on a CD for us.  If I have missed anything you did please know that every bit of help you gave us made the day even more successful and took a lot of weight off my shoulders!


Tara, Jeff and Abby Etling - for the tables, the donations, the baked goods you delivered, your help sorting cleaning, setting up and working the garage sale a huge thank you!)


To Karen (the Etling family's neighbour)  We have never even met, but you sent so many items for the bake table - all of which were sold and sold quickly!  Thank you for all the time and effort and your amazing generosity!



MaryLou Crumb and family - thank you for the hotdogs, condiments and generous donation!  It was so nice to finally meet you at the garage sale!


To two of my favourite people in the world Geoff and Joann Male, the awe inspiring amount of items you donated, your help, advice, love and support; THANK YOU SO MUCH!


Kris, Bernie, Sara and Megan Tessier - for staying up late the night before baking, for ransacking your house to bring donation items, for working at the garage sale, and everything you do every day to help Leah and I, you have our heartfelt thanks!


Valerie Azotini - for all the items you brought, for soliciting your friends and bringing even more and for all your help the day of the sale, a big thanks!


Stephanie May - for bringing all the contributions and the big tables, we really really appreciated it all!

To my wonderful family, Mom, Dad, Anne, Brandon, Amanda, Matthew, Christopher, Teresa, Paul, Connor, Bethany and Hannah.  For the hours and hours you spent helping us, the blood, sweat and yes, even tears that flowed, the aching feet, ankles and backs, for every broken nail, every hug, every giggle, laugh and spray of coke, for turning your vehicles into moving vans, for spreading the word, FOR EVERY LITTLE THING YOU DID TO HELP US, Leah and I offer you our humblest and sincerest gratitude.

and here is the part you have all been waiting for....

THE GRAND TOTAL raised at the Garage Sale/BBQ is     $1105!

 

 

 

 

SAVE THE DATE!

July 21st is the date for Leah's Fundraising Event!  There will be food, drinks, games, silent auction, 50/50 tickets.  We are looking into music and all sorts of things to make it a "must attend event!"

More details will follow soon - but mark July 21st on your calendar!