Sunday, August 30, 2009

Lunch Time!


Found out yesterday that Hanna's new favourite food is Kraft Dinner! Good old Mac and Cheese. I figured I'd let her have her own today so we didn't have to mooch from Gracie again like we did yesterday. She stuck her hands in it right away, which proves it's the good stuff. Normally she's very hesitant to touch different things.
Then she figured she'd try out her fork!
But decided it wasn't as much fun.

Gracie eventually had to come and help her out. What a good big sister!

Friday, August 28, 2009

My Little Gracie Goose!

 
My little sweetie pie had to pick and bring me some oh so BEAUTIFUL "flowers" from the field!  Oh, I had to get them some water right away!

Wednesday, August 26, 2009

Kisses!

Hanna is officially giving kisses when we ask her to! She shows her love mostly to baby dolls and all the new babies in the family.
Checking out the doll...how she "sees" it, I can't explain...
She goes in for a wet one!

So proud of herself!

Monday, August 24, 2009

What a Pair!


I bought them matching shirts the other day.
So cute!

Sunday, August 23, 2009

Potty Time!



There's my big girl doing her business on the toilet! She knows exactly what the toilet's all about! Of course she can't tell me yet when she's gotta go, so it's all about timing. Sit 'em on that toilet as soon as you can and they'll know in no time what it's for!



Gracie was about 6 months old when I changed my last dirty diaper! She was easy! Potty trained at 14 months too. Little smarty pants...

Friday, August 21, 2009

Day Trip!

We figured we'd make the most out of this trip, since we had to stay for three whole days! So, we went to the zoo. Gracie's been to this zoo before, but it's Hanna's first time! They had lots of fun. The weather actually turned out really nice too. Good thing we didn't listen to the weather woman who said it would rain all day. Rain actually would've been nice...it was so hot!!

Hanna had a good sleep when we first got there because she tired herself out from being so upset when they took her blood again. Poor kid
. :( But afterward she was really enjoying herself! I can't believe she still likes the Snuggly.At the end of the day everyone was so hot, we figured we'd hit up the splash pad! I accidentally left Gracie's bathing suit top at the hotel, so I figured I'd let both the girls go topless. :)
Hanna was cold!

Doesn't she look like she's having fun? She's such a sissy!


Hanna looks so small here! Isn't she sweet?




Hanna's favourite part was the polar bear exhibit and the jelly fish. The fluorescent lighting was perfect for her limited vision.

The bears were being lazy and just laying around, and Gracie, being the sassy little girl she is, kept telling them to get up and swim, but they weren't listening....

Thursday, August 20, 2009

At the Hotel

We stayed at Days Inn this time because it's a whopping $100 cheaper a night than our regular Delta Chelsea stay. These hotels are ridiculously expensive because they're right downtown Toronto. It was definitely not as clean as I would have liked it, and a bit longer of a walk to the hospital, but I still think it was worth it for the price difference. Afterall, it was only for a couple nights.

Gracie and I stayed up late and went to the store in the hotel. We figured we'd get us a treat since we could have it all to ourselves! Those Dibs are so good, and what we didn't eat stayed frozen all night in the little mini bar fridge! I was surprised!

The girls really enjoyed swimming. We went over to Sears to get Gracie some water wings because I forgot to pack them, so she had a great time.
The water was as warm as bath water so Hanna actually fell asleep at one point!They actually slept pretty good too!

Wednesday, August 19, 2009

Hanna had her appointment this week with the Metabolic and Clinical Genetics department at Sick Kids this week. She had three days of random blood tests while fasting, so she wasn't overly happy. We made the most of our trip anyhow.


She actually did better than I thought she would. This picture was taken almost immediately after her blood was drawn. There wasn't any schedule that we had to follow, so we did each test as early as possible in the morning since she had to fast. She's not a happy little camper when she can't nurse at 4 am, but she did pretty well considering. It worked out good because we could spend the rest of the day doing whatever we wanted and keep the girls nice and busy.

Friday was finally the last day of testing. We had an appointment with Dr. Mendoza, Geneticist and he really only had positive things to say! He's been worried about her small head size because that can be associated with delays in development, but he was very happy with her progress! There was actually a "developmental expert" in there with us taking notes and he said she is doing everything she should be at this age! And that's not even compared with a visually impaired child! So we're hoping that she continues to do so well.

We wont know any blood test results for probably another week or so because they're really looking deep into it. They can't figure out why she's so tiny and why her amino acids are so high, so they're looking at everything. Her MRI is booked for November 13th, and that should point them either towards a metabolic problem, or away from one, so I'm anxious to get that over with. It's just a long time to wait. Until then, I guess we'll just sit tight and pray and hope for the best.

We left Toronto feeling pretty good about the whole thing though, so it was a good trip. Hanna hasn't grown much since our last visit a month ago, but she now measures at 25 inches long and 12 and 1/2 pounds. Her head was the most noticeable growth this month, so that's a really good thing!

Tuesday, August 18, 2009

My Babies!




I love these ones. Haha!
Gracie makes the best faces...and Hanna thinks she's hilarious!

Sunday, August 16, 2009

Perfect Summer Day






Gracie and I got to hang out at the pool today for a surprisingly long time while Hanna had a nice snooze with Matt. It was a nice, long, hot day and perfect for doing nothing but swim. :) All of a sudden Gracie is jumping off the deck, which she was always too scared to do, even tho I'm right there to catch her, and swimming on her own with nothing keeping her afloat except her little water wings! I was so impressed!

Wednesday, August 12, 2009

Here We Go Again...



I got a call this morning from SickKids. Just as I figured, the metabolics team thinks Hanna should have more blood drawn for additional testing. They are puzzled! They don't really want us to have it done local again, neither do I for that matter (since they messed it up last time) so we're gonna make the trip to Toronto. They want to do three random tests while fasting, so we're going to have to spend a few nights.
That's alright, it's worth it. Hopefully they'll figure something out! It's great because they are being SO thorough, and looking at every possible angle. They have been ruling things out and putting together pieces, and just doing an awesome job with my baby.
They also told us that whenever we can get out there for this blood work, they'll accommodate us...SickKids Hospital is AMAZING. I recommend them to anyone who has a sick child.

Tuesday, August 11, 2009

It's another BOY!

This morning, well, afternoon, my sister Kristyn and her husband, Brian (Bryanna and Austin's mom and dad) had a little boy! They were sure it was a girl. Ha ha...I was right. I figured boy all along. Anyhow, looks like daddy! Very very cute, and much smaller than their other kids! Cameron William is what they're calling him. Nanny and Pappy now have 3 girls and 3 boys.
Congrats guys!

Friday, August 7, 2009

MORE Testing?





I called Toronto today to see if they had gotten Hanna's third blood test results back yet, and they had. They just don't really know what to tell me yet.
Hanna's amino acids are still very elevated, and they can't figure out why. It's not her diet, and her liver and kidney function tests came back normal (thank God), so they're assuming it's genetic. The hard part is finding that one gene.
So Dr. Mendoza, Hanna's Geneticist, is sitting down this afternoon with the Metabolics team at SickKids to try to figure something out.
So I was told that one of three things will probably happen:

1. The metabolics team will know right away what to do and will get Hanna started on treatment, diet change, if anything should be done

2. This could be perfectly normal for her and it's just how her body absorbs nutrients, so nothing will be done

OR

3. They'll want to see her to have more testing done.

Hopefully they'll let us know soon. I'm hoping it's nothing too serious and maybe it is just completely normal for her. Amino Acid Disorders can be a scary thing. They can cause a lot of damage. She doesn't look like she's sick to me. She seems to be doing pretty darn well!
Please keep her your thoughts.

Thursday, August 6, 2009

She's Doing So Good!



Alright, well Jodie from CNIB was here again this morning and she gave me Hanna's report from her Functional Sensory Assessment and the results from the Oregon Project for Children Who are Blind or Visually Impaired! The Functional Sensory Assessment was completed to determine how well Hanna is using her senses. And it's very encouraging. We once believed that Hanna didn't and would never even have light perception. Now, sometimes I even forget she has an impairment! She's doing so great.
The Oregon Project is used to assess Hanna's developmental level in eight different domains while taking into consideration her vision loss, and to help us to select appropriate teaching goals. Her developmental level ranges from 8 months all the way to 1 year and 7 months, so she's doing very very well!
I'm so proud!

Wednesday, August 5, 2009

One Important Tip





When I thought that Hanna could have vision problems, I remember being on the internet every chance I had researching everything about eyes! So I figure if maybe there's someone out there who needs some answers for their child, maybe they can get them here. That's why I initially started my blog.

The first thing I want to let everyone know is to look at your photographs. I know this is going to sound weird, but it works. Ya know the annoying red eye you get sometimes in your pictures? That actually is a good thing. A red reflex in your eyes means you have healthy eyes. Hanna doesn't have any red reflex in her left eye at all. I saw this in pictures. The right one would always have red in it, and nothing in the left. Sometimes, the left eye's pupil actually looked white.

I noticed white in Hanna's eye before seeing it in photos, and thought it was maybe a reflection from something. I thought it was strange, but never really thought too much about it.
Then I saw a website about a little girl who's cancer was found because of the odd "white pupil" in photos. That little girl had retinoblastoma. And the white in her eye was actually a tumour.
That scared the crap outta me. The next day I took pictures of Hanna at every angle, and sure enough, I saw white in her eye. Thankfully Hanna doesn't have the same problem as that little girl. Her vitreous (the clear fluid in her eye) isn't clear as it should be. Which indicates a major problem.

So all I want to say...without getting into Hanna's entire story again...is if you suspect an eye problem with your baby, take pictures! And show your optometrist or ophthalmologist anything you think is unusual. You should go by your instincts alone if you suspect anything.

Look carefully at her eyes in the first picture. I added the other pictures just 'cause she's cute!