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!

Fundraisers gearing up!

A wonderful family friend has approached all the Catholic high school principals in our area asking them to participate in a Loonies for Leah event.  The event could be a special dress down day, a "buy out" day where they get to pay money to get out of last period, or something else that they come up with.  She also reached out to the principles of our family of Catholic elementary schools asking them to participate somehow too.  As well, friends of hers have offered to have Loonies for Leah jars put at their businesses!  So I am creating a flyer type letter to have along side the jars and will be sending along copies of the business card I created encouraging people to come to the website.

A wonderful little girl named Gina from Leah's school will be selling her handmade crafts at a garage sale this weekend with the proceeds going towards the Minnesota trip.  God continues to bless us with wonderful friends and we are so thankful!

Everyone in the Niagara area, please keep June 16th available, my mother will be hosting a fundraiser garage sale, lemonade stand, Leah's Angels table and (possibly)BBQ.  If you have clutter lying around your house that you would like to donate towards this event, please let me know, I will pick it up or it can be dropped off at my house.  We will also be debuting these banners that I made at Vistaprint.ca  I LOVE that site!  :)

Planning, planning and more planning

Only a few short days since we found out Leah will be going to Minnesota to *fingers crossed!* finally get a diagnosis and so much is happening!

We are so blessed to already have a group of friends sign on to be my Dream Team - to give me ideas, contacts, tips, help and all sorts of skills to enable us to raise the necessary funds to get her there.

The finances associated with going to Minnesota are overwhelming.  Since Leah is an International Patient, they require....

"a  minimum deposit in the amount of $3,000 to $5,000 U.S. dollars is required at the time of registration, depending upon anticipated medical needs.  This amount represents neither the minimum nor maximum charge; it is a deposit toward services received."

Each time I take a peek at the online sites to check the flights and hotel costs our bank account cries a little bit.

So a fundraising blitz looks to be on our horizon.  I have spent the last couple of days drafting letters to doctors, Service Clubs, her school and local retailers, I have also created a dedicated Facebook page attached to this blog and today I am heading out to open a special bank account for her.  I've made contact with our Group Health Insurance Providers we have through work, and we both have some coverage for International Medical Care which is a big weight off our shoulders - as long as the Doctors and OHIP come through with the proper paperwork.

So all in all it looks like it will be an exceedingly busy summer for us so I am extra glad I don't have to work!

If anyone wants to volunteer to help out with any of our fundraising endeavours we would really appreciate it, or if you want to send fundraising ideas please pass them along.

We are heading to Minnesota!

I have submitted an appointment request to the Mayo Clinic!  And even more crazy?  They responded with a request for all of Leah's medical records and test results!  And even crazier???  We have an appointment date! Praise the Lord!  His hand is felt in all we do.  Thank you everyone for the prayers you have already sent up on our behalf.

Leah's first appointment with the Mayo Clinic in Rochester, Minnesota is August 7, 2012!  (Yes THIS year!)  They say to expect a stay of 5-8 days.  She will be considered an outpatient though so she will be able to come back to the hotel room with me each night.  From the letter they sent...

Length of Stay: The average length of stay for patients to complete a routine medical exam is 5 to 8 business days, but the actual time spent at the clinic will depend upon the complexity of your case and appointment availability at the time of your appointment.  It can be difficult to predict in advance.  In some circumstances, your evaluation, surgery or treatment may involve a return visit.

She needs to show up that first morning having fasted and they will get going right away.

What to Expect at the Appointment:Your child's Mayo Clinic visit will begin with a thorough evaluation of the medical concerns. The primary physician, who will be responsible for coordinating your child's care, will order additional tests or consultations with specialists, based upon your child's medical needs.  After testing has been completed, the physician will review the results with you and make final recommendations.

Now our biggest obstacle is arranging the finances.  Please, please, please continue to keep her in your prayers.

It's official!

Yes, it is official, Leah does NOT have Narcolepsy. 

Not that any of us are surprised by the news, we (family) never believed she did anyway.  But it is nice to have it verified by the professionals.

We went for the follow up appointment on Wednesday with the Sleep Specialist - very nice man.  Unfortunately we left him scratching his head because he can't figure out what this thing is either!

We go back to see him in three weeks for another follow up.  He has offered us the option of starting Leah on Dexedrine - a half tablet in the morning and if no results add another half at lunch.  The thought process is that it <might> help with her episodes of overwhelming tiredness, as Dexedrine is a stimulant and has proven very beneficial in patients with Narcolepsy.  He is hoping if we could eliminate the symptom of overwhelming tiredness, maybe she would be able to stay at school and not come home so often. We haven't decided yet if we will start her on the meds.  I need to do some more reading and weigh the pros and cons.  I have the prescription if I decide to go ahead with it.  He said if it was going to help we would notice a improvement quickly.  I just need to see if the benefits would outweigh the side effects.

He was also going to do some research into a Functional MRI.  In a nutshell, a regular MRI is to see the structural aspects of the brain, a Functional MRI allows you to see how the blood and enzymes affect the brain.  He needs to do some research because he had a niggling thought in the back of his brain, that there have been some advances/research on the role of a functional MRI and Narcolepsy/Sleep disorders.

As for Leah herself, she has developed a prolonged case of the "blurries"- since an episode on Jan 16th, she has maintained a constant state of her head feeling blurry on the inside.  Back in the spring when this all started, this had happened, and she stayed blurry for a over a month.  Since then, the blurriness had occurred only during an episode and then faded shortly afterwards.

In addition, this past weekend, Leah began having trouble with her right eye.  During an episode, Leah always says her right eye is bothering her, she rubs at it, tries to keep it closed, wipes at it etc.  She can't explain what the issue is, only that it bothers her or feels weird.  On Saturday, I noticed she continually placed her hand over her eye while reading me a story - she couldn't focus on the words unless she closed/blocked her right eye.  This carried over to watching TV as well.  It continued until Sunday when it resolved itself.  We had her checked out by the eye doctor again who says her eye/vision is just fine.

We have reported both issues to the neurologist, but no advice/info for why it is happening has come back to us.

So, while it still isn't an answer, we can check Narcolepsy off the list. 

On a side note...it feels like we have been fighting for answers for SO long, but in reality it has only been 8-9 months.  In that time we have been to see a Paediatric Specialist, a Blood Specialist, a Muscle Specialist, a Neurologist, had a CT Scan, 2 EEGs, a EGG, worn a holter monitor, had a sleep study and a sleep latency study, had a MRI and genetic testing.  Considering wait times in Ontario, she has had incredible access to medical resources!  

I have to remind myself to continue looking on the bright side of things....it could be much worse! 

I received that reminder on Wednesday shortly after our appointment.  We had stopped by Ikea for a quick shopping trip.  Waiting for the elevator, I was grumbling in my mind about the lack of a diagnosis, feeling sorry for myself about all the trips to Hamilton, all the worry and stress, feeling sorry for Leah for all the missed school and activities; the elevator doors opened and I saw a mother pushing her daughter in a wheelchair.  Even though she had a hat on, you could tell the girl was bald, her colouring wasn't good, she had big dark circles under her eyes, she was bundled up to keep warm in the store and had a blanket lying across her lap.  Cancer/leukemia immediately came to mind.  My eyes connected with the mother and we shared a brief smile.  I can not begin to imagine what struggles and heartache she feels;  it certainly put mine into perspective.  Yes it sucks that we are on this quest (it is now a quest in my mind, not a battle, or a struggle or anything else negative), it sucks that it has already impacted us as much as it has, but when I think about how bad it could be, I remember to count my blessings and not borrow trouble.