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!

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!

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 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!