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.

A Little Bit of Everything :)

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

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

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

 

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

 

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

 

Kate Balint

 

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

 

All in all the experience taught me a few of things

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

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


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

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

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

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

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

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

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

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

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

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

Thanks as always.

PROGRESS!!!!! :)

Well, we haven't found the magic bullet yet, but we are making progress!  First and foremost we got the orders for a MRI! 

But first a bit of history, a couple of weeks ago, before Leah collapsed for the second time, she had a very bad morning, very lethargic, no energy, not eating, extremely blurry and dizzy, with a bad headache.  We decided to bring her to the Children's Emergency at McMaster.  She was seen very quickly but we got the same response as usual, it isn't an emergency situation and wasn't something they could deal with, within the scope of their work.  They offered us two options, we could be referred to the Paediatrician on staff which would be a one time visit of a maximum 20 minutes, the plus side being it would be the next day.  The second option would be to be referred to a Consulting Paediatrician who would follow her case until its conclusion but would take a couple of weeks to get the appointment.  This option would result in the best possible outcome - someone who could give me a second opinion AND actually do something about it.  So the choice was obvious - wait a couple of weeks and get a second opinion.

A Consulting Paediatrician is a doctor without a regular roster of patients.  She receives referrals from hospital system for children that are in need of a higher level of care than a general practitioner can provide.  Once the "crisis" or medical need is over, care is returned to the general practitioner.  Prior to going to our appointment, I did a little research on her, I went to the website ratemds.com to find out how other parents felt about her.  The response was great!  Parents were extremely pleased with both her medical skills and her bedside manner.  A couple parents even said she figured out their child's problem when no one else could!  HALLELUJAH!  My own personal Dr. Gregory House!

So off we went, with previous test results in hand, my little green book detailing Leah's daily symptoms, complaints, appointments and treatments and a whole lot of hope.

This doctor was FANTASTIC!  She actually spoke to Leah, asked her lots of questions and only looked to me for clarification.  Then she settled her down with some books and then it was my turn.  She really, really, really listened, took copious notes on Leah, her siblings, her family and her friends.  She reviewed the test results and agreed with Leah's paediatrician in saying that it is a very confusing group of symptoms that don't appear to point to anything in particular.  However - and this is what sets her apart from the others - she does not think it is a good idea to just sit back and wait!  She has ordered the MRI, realizing that the Neurologist will want one when we finally get the appointment.  She has also sent out a referral to the Neuromuscular Specialist at McMaster.  We should be able to get an appointment with him relatively quickly.  She did hasten to add that this doctor can sometimes be lacking in bedside manner but he is brilliant.  Even if it turns out that he can't give us a diagnosis, he will be able to assist us in ruling out things.


All in all, the appointment lasted almost 90 minutes.  Not once did I feel rushed, or like I was wasting her time.  She has even gone so far as to assure us that if the wait time for the MRI is too long, she will contact us so we can go over to Buffalo MRI and have it done there.  I think that what makes me feel the most relieved (in a weird sort of way) is that she feels the urgency that I do.  She understands my desire to get answers or at the very least rule things out as quickly as possible. 


I actually slept last night for the first time in weeks.  I don't have any answers yet, but I feel so much closer!

Back from the Paediatrician's Office

Our pediatrician is back from vacation - finally!  He has been my children's doctor since our oldest was less than a year about 12 years.  We bring him cookies at Christmas, the kids draw him pictures and send him cards through out the year.  We all love him.  Today....I could strangle him!

I just feel like he should be doing more, feeling the urgency like I do.  I want him to order every test he can think of, and when he runs out of those, find others.  I want him to figure this out and get us on the road to normalcy.  I want him to feel this bone-deep dread like I do.  Unfortunately, he isn't, he won't and he doesn't.

He agrees that there is something wrong, that her tests are coming back wonky - but not wonky enough to point us in the right direction.  He refused the MRI AGAIN, saying that he would leave it to the neurologist to determine if one is necessary or not.  He did however, resend the referral, send copies of her bloodwork and copies of her older brothers bleeding disorder info.  He itemized by day her symptoms and complaints, with the hope the info would expedite the appointment.  What he won't do is order any other tests, xray/US her stomach again or change his "wait and see" approach.

The Consulting Paediatrician from Hamilton has come through with an appointment for Leah for 2:30pm today.  We will be going to see her.  I requested copies of Leah's results for the last 18 months to keep on hand for emergencies.  I will bring her a set to review and hopefully get a second opinion.

Keep your fingers crossed for us!