Mayo Moments

Wednesday 12 October 2011

Little Red Wagon!

My dear Grandmother in Nova Scotia has just been beside herself about Leah.  She is so worried about her and calls my mom often for updates.  Last month she was trying to convince us that we needed to buy Leah a wheelchair - she is so afraid Leah will have a bad fall and get hurt during one of these episodes.

Well I don't think any of us are at the stage where we would consider a wheelchair, but I had been looking into strollers/buggies made for bigger kids.  The ones that are made by medical companies have a wheelchair-ish look to them, and the ones that are made by baby buggy companies just aren't right either. Not to mention that the prices are skyhigh - not that I wouldn't buy it if necessary but golly it would hurt!

Then, thanks to the wonder that is Pinterest (my newest addiction), I stumbled upon this little beauty.  The Easy Go Wagon.  It is 4 feet long when open, has a canopy, can fit two kids and/or tons of stuff, has great heavy duty wheels, a weight capacity of 150 lbs and folds up nice and small so I can carry it around in the van and actually fit something else in!

I had seen similar items over the summer while at various parks and attractions and had been intrigued.  I started looking around but didn't have the right search terms to find them.

Today I found it on EBay, brand new, low shipping with a Best Offer option.  They wanted $99.99 but I offered $75 and they took it!  I have seen them as high as $189 so I am very pleased with my purchase.

Now I don't have to be worried about what to do with Leah while we are out.  No more trying to squeeze her into Pat's buggy and displacing him.  She will now have room to lay down when she needs to, and when she really needs to cling to someone, one of the other girls could even climb in with her.

All in all, I am very pleased with this.  It will ship out tomorrow morning, I will pick it up at my friendly depot in Niagara Falls, New York later this week and then we are ready to head out and enjoy the sights and experiences of fall here in Niagara!

Tuesday 11 October 2011

FRUSTRATION!

Today we went to the paediatrician's office for a follow up on Leah's extensive bloodwork and EEG.  The bloodwork had been ready on September 26th, and for some reason we were not called.  The EEG was ready some time last week, and again we were not called as promised.  I called McMaster to find out the status of it, and when told it had been read, dictated and printed, called the paed's office and made the appointment myself.

The waiting is tough enough, never knowing when the phone call is going to come and even worse, what it is going to say.  But to wait, and wait, and wait, and never get the promised call - for no apparent reason, really burns my butt!

Results

EEG - bottom line,it  is still showing as completely normal.  His response was, if the CT Scan and two EEGs are normal we can assume the brain is not involved.  But we will still wait for the Neurologist appointment.

Bloodwork - her thyroid hormones are normal - this means there is neither hyper nor hypothyroidism at work.  However, the other tests that use thyroid indicators(anti thyroglob, microsomal anti & TSH) are high and have been slowly increasing all summer.  This points to an autoimmune problem and based on that he has sent out a referral for her to see a Paediatric Endocrinologist at McMaster.  As well her CK (muscle enzymes were still high), her Blood Gases were a little off (PCO2 high, PO2 low and HCO3 high), and her red count high.

As usual the statement I received when asked for a more definite diagnosis was, "It shows something is going on, but nothing is high enough to point to one thing."  Hence another referral, more waiting, another chance to explain 3 years worth of symptoms in a 20 minute appointment, more tests, more questions, more exams and more WAITING!

In the meantime, Leah is missing on average two days a week of school - not including doctor's appointments.  So far, this is not impacting on her learning.  The work she is bringing home is excellent and she is still loving being there.  She has grown a couple of inches and gained a couple of pounds since July which is good, but her eating is still a little sketchy, so we have started giving her a bottle of Pediasure a day in addition to her vitamins.