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!

A Princess and her Castle

After a busy and very exciting weekend, followed by a busy and exciting Monday, Leah is having a TERRIBLE Tuesday! Seizures, sleep disturbances, blurry vision, headache, weepy, tired, cold. She is obviously staying home from school. She had been doing so well too.

At least she was interested in learning more about what is going on with her. I gave her this analogy.

She needs to think of her body like a castle that is under attack(germs, viruses, etc) all the time. Inside the castle there are defenders(anti bodies) who run around defending against the attackers. Sometimes the walls of the castle are weakened by mysterious forces (sickness, stress, overtiredness etc) High in the tower(brain) is the princess. She has special protectors(Keppra). Sometimes the defenders are so eager to do a good job defending the castle that they get confused and start attacking the things that live in the castle too. When this happens the princess's special protectors help to keep her safe but sometimes, the confused defenders fight them as well. And as skirmishes breakout thoughout the tower different things(symptoms) happen.

This started a long conversation but she finally seems to "get it". Of course by this afternoon she may not remember we even had the conversation! But at least I will be able to refer back to it :)

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.

Small Update

Leah has been doing quite well at school and she has only missed a few days!  Granted, she has many mornings where she isn't feeling well and would really prefer to stay home, but we are strongly encouraging her to go and give it a try.  Always with the understanding that if she can't handle it she can come home.  So far so good!  Her teacher sends home notes full of positive reports too!

Her last round of bloodwork and a look at her behaviour patterns showed that we needed to increase her medications. She now takes a larger dose of her anti-seizure medication in the evening.  Hopefully this will help with the night time seizures she is having that are causing her so many sleep disturbances.

As well, we have just upped her thyroid medication as the blood work showed her thyroid was still having to work too hard.

We have made contact with Epilepsy Niagara and joined both the parent and child support groups.  I think this will be helpful for all of us.  We went to our first set of meetings on the weekend and have already learned so much!

Leah is having regular appointments with a massage therapist to help with her muscle and joint pain, and it seems to be helping an awful lot.

She has appointments with Neurology and Endocrinology over the next couple of weeks and this will complete the passover of information between the Mayo Clinic doctors and her medical team here.

We have an MRI booked for January to see how/if the disease has progressed there.

All in all, I feel Leah is in pretty good shape.  Things aren't perfect, she still has episodes, symptoms and seizures, but it is much better than it was!

Leah and her sisters are busy planning Christmas treat bags for the families that will be staying at the Hamiliton Ronald McDonald House over the holidays.

They are also helping me organize another donation to take to them when we have to go to McMaster next week.  We are collecting sample sized toiletries, toothbrushes and toothpaste.  They are in particular need of  toothbrushes and toothpaste.  So if you are like me and have a drawer filled with unopened samples that you will never use, just let us know and we will arrange to pick them up!

An Open Letter to All Doctors

When a patient complains of chronic pain and illness take them seriously.  When symptoms interfere with their life and keeps them from doing the things they love, believe them. When the effects of it all begins to change who they are, be there for them, listen to them and help them.

A doctor is conduit to knowledge, yes he has the education to interpret that knowledge and the skills to put that knowledge into practice, but when it comes right down to basics, he is the conduit.  He can not look at you and just know what your problem is.  He needs to order tests, perform examinations and gather information before he can make a diagnosis.  If that information gathering is clouded by preconceived notions, assumptions and prejudices then the road to a diagnosis and recovery will be fraught with problems.  Even worse, if fact finding and information gathering is impeded by a lack of empathy or an overabundance of pride, then recovery and wellness will be compromised.

Being a doctor means more than playing God, being right or being the one in charge.  Being a doctor means putting the best interests of your patient first.  It means taking the time to really listen, to get to the bottom of the issue.  It means leaving no stone unturned until you find a way to assist your patient to the highest level of wellness you can.  And if you can't, it means you help them find someone who can. If doing that means you have to admit you don't know everything than so be it.  Pride should not be a factor when searching for a diagnosis - your patient's well being is the only thing that truly matters.

Every patient that walks through your door is unique.  No two patients ever present with the exact same set of symptoms.  The reference ranges listed on lab reports are based on what 95% of the population should fall into.  But that leaves 5% of the population that will fall outside of those ranges.  With a world population of roughly 7 billion people, 5% is a pretty large number.  That means over 350 million people won't fit into the standard result reference range.  Please don't let lab results be your sole method of diagnosis.  

Rare diseases exist.  It's pretty simple, they exist.  Maybe you haven't ever dealt with it, or maybe you have never even heard of it; but that doesn't mean that your patient doesn't have it.  There are 7000 different rare diseases that impact 1 in 10 people.  The Global Genes Project estimates there are some 350 million people worldwide currently affected with a rare disease.  Isn't it interesting how that number pops up again.

Your patients are more than a number, a dollar sign or a set of symptoms.  They are a living, breathing person.  A person who loves and is loved.  A person who is struggling, scared, in pain, confused and so many other things. A person who just wants to be heard, understood and helped.  In the end, your humanity, your empathy and your understanding will do more to assist that patient onto the road to recovery than anything else you can do.  If you put those things first as part of your practice you will be a success as a doctor.

Back to School, Phone Calls with Mayo and another Diagnosis

Did you see the local newspaper from September 4th?  Leah was on the front page!

http://www.stcatharinesstandard.ca/2012/09/04/a-new-start-for-leah

Special thanks to Standard Reporter Grant Lafleche for another fantastic article!

Leah and the rest of the crew got back from the cottage on Sunday September 2nd.  It was so wonderful to see them all after two weeks.  Paul had kept a journal detailing her medications and making notations about her symptoms or in this case, lack of symptoms!  Other than a few small blips, she had a perfect two weeks.

Leah started back to school with all the other kids in the region.  We were better prepared this year and had made contact with the school and her new teacher.  All the new information we had gathered at Mayo Clinic was shared with the people that need to know.  We felt confident sending her off this year, for the first time in a long time.

Her first week was fantastic, she had no complaints, loved being at school and absolutely loves her teacher.  Then the weekend came and she started to feel tired, had lost her appetite and spent a lot of time cuddling a stuffed animal and laying around.  Monday morning she woke up blurry and dizzy, emotional and clingy.  We encouraged her to go to school and try and make it through the day.  I felt horrible!  But I know that this is her new normal, and there will be plenty of days when she isn't going to feel 100% and we will have to nudge, push and prod her to "suck it up" and carry on.  While that goes against my soft hearted nurturing side, my logical side says it is necessary.

The good news is she made it through that day and managed to stay at school the whole day!  The bad news is she felt the same yesterday morning, again, we encouraged her to go to school, but this time she came home shortly after lunch.

I am not sure what is causing her regression, it could be her meds need to be adjusted and we will be addressing that at her pediatrician's appointment on Thursday.  It could just be that the excitement and stress of the first week of school finally caught up with her, or maybe she is already fighting off one of the many back-to-school viruses.  The doctor from Mayo has already recommended upping her Keppra.

I guess this is my new normal, always troubleshooting!

I have again spoken with the Mayo Clinic.  This time it was to finally get the results of the last round of bloodwork.  They had been exploring the theory that she had more autoimmune issues going on in her body and the possibility that all of her issues could be attributed to an Autoimmune Disorder.  Well the news isn't good, they have diagnosed Hashimoto's Encephalopathy.

We are still trying to assimilate all the new information surrounding Hashimoto's Encephalopathy (HE).  There is a lot to learn and it is difficult to find reliable information regarding how it affects children.

I also finally got the written report from her Autonomic Testing.  While her blood pressure and heart rate were fine, as part of the conclusion, it was noted she has a "Severe Postganglionic Sudomotor Failure".  Basically this result represents the findings of the QSWEAT test.  Basically her Central Nervous System did not respond properly when prompted to sweat.  They had attached 4 sensors to her to monitor sweat production and only one sensor was able to detect any sweat at all and that was only a minimal amount.

So, what does that mean?  I really have no idea, my research is not getting me very far, so I will have to wait to speak with one of the neurologists again.

Meanwhile, the neurologist at Mayo would like Leah back in 6 months to redo the MRI, the Autonomic Testing, and bloodwork to chart the progression of her various disorders.  I am attempting to set it all up here and just send him the results.

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!  

Back Home

Just a quick note to say we are back home safe & sound and working on getting settled in.  We got back to our house around midnight and I started back at work at 830am the next morning.

Leah has been given the go ahead to make the trip to the cottage for two weeks with the rest of the family, so we are also busy getting that together as they all leave early Saturday morning.

I should have a complete update on the last day at Mayo and our plans for follow up and going forward done by Monday!

Thanks as always for all the good wishes, help, love and prayers!

Kate and Leah

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.....

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!

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!

And the tally is......

With the expenses paid, and some outstanding ticket money.............

The tally for how much was raised at the Summer Bash Fundraising Benefit for Leah is.....

$3462.25

Thank you to everyone that came to the benefit, whether to stayed for five minutes or five hours!

More on the benefit later, I need to get to bed!

One Day to Go!

As I sit here at the kitchen table procrastinating sipping my cold coffee, staring at the pile of ingredients waiting to be artfully blended into some fabulous food for tomorrow; I can't help reflecting on the past 57 days.  What a wild ride!  So much has happened, so much kindness has come our way, so many tears have been shed and so many thank yous uttered.

In 57 short days, we have accomplished so much and none of it would have been possible without the love and support of my family, friends and community.  It feels like I have said thank you a million times in the last 57 days, but I can't say it enough, there aren't enough words in the entire world to express our gratitude.

On day 58 we will be busy at Summerfest in Pelham and the Summer Bash Fundraising Benefit for Leah, and after that there will only be 15 days until Leah and I board the plane to Minnesota.


Fifty-seven days ago, our goal looked impossible, now it is within reaching distance and we couldn't be more grateful.

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!

All Leah, All the time!

The Niagara Region is certainly going to get their fill of hearing about Leah this week!

Thanks to some AMAZING leg work from my good friend (next best thing to a sister) Amanda Fox, the media in the region are suddenly lining up to run her story!  Amanda, we can't thank you enough for working so hard getting Leah's story out to the community at large.

Here is the media "blitz" lineup so far!
Monday's Tribune page A3 - awesome story about Leah!
St. Catharines Standard coming Monday afternoon to do interview and pictures
610CKTB - on air telephone interview at 1130am on Tuesday morning
Niagara This Week interview and pictures Tuesday afternoon
CHCH contacting us Tuesday or Wednesday!

I will be sure to post the links to the stories as I find them.


Thanks to the article in the newspaper this morning, Leah's campaign has already received online donations from people as far away as Ottawa!

As well, I had a very informative phone call from a Welland woman who has been through all the same struggles as Leah while she looked for a diagnosis and finally found it!  I walked away from that phone call not only with lots of information, but with hope as well.

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

Friends are Wonderful!

I have heard it said, that you can't develop true friendships online - but I would have to disagree.  Being a busy mom of 5 who also happens to work full time, online friendships are sometimes the only ones I do have time for!

I "met" a wonderful lady named Stacy many moons ago via an online forum for moms in the Niagara Region. We both participated in the discussions there, maybe noticed we had some common thoughts and ideas, maybe chatted from time to time.  When she began her own photography business Stacy's Creations Photography all of the ladies on the forum for so excited and happy for her!  And many of us, myself included came out to support her and have our family pictures taken and to finally meet face to face.  

Of course the pictures were wonderful and every time we have gone back they are even better!  And I made a great friend in the bargain.

Well now, she has come up with a way to support me and my family.  Stacy has very generously offered to donate the proceeds of a fundraiser to Leah and another little girl.  Stacy will be booking "mini sessions" to occur on August 3rd in Chippewa Park with all the proceeds to be split between the lovely OJ and my Leah.  Take a look at the poster below and please book a session, I promise, you won't be disappointed!

Benefit for Leah

Many of you have asked and I FINALLY have details regarding the benefit for Leah!


Date:  Saturday July 21, 2012
Time: 7pm - 1am
Where: The Celtic Club, 14 Secord Drive St. Catharines


Tickets are $10, they can be purchased from a number of friends and family that will be selling them, leave us a message on the blog and we will contact you to arrange the purchase or purchase them online via this blog using the Donate button at the top right - in the notes section tell me how many tickets you want and they will be waiting for you at the door.  


There will be live music, lots of food, a silent auction, door prizes, raffles, games and lots of fun!


We have use of both the bar area and the hall, so if you want to sit and chat there is a place for that, but if you want to be in the thick of things enjoying the music and the games, there is space for that too!


Hope to see you all there!

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.