Gracie and Hanna were both due for their exam, so I ran them out while Matt stayed home with the other two.
I administered the dilating drops before we went, so there would be no drama at the office.
The girls were good, and did what they had to do, and Gracie got an "A" and then Hanna had her turn.
Every visit he gets a better look into the back of her eyes. He got a really great look, and said that nothing looks "active", but he'd feel better if we had a specialist take a look and keep an eye on things.
For some reason, SickKids wont do an exam without putting her out. They want to do an invasive EUA which I'm opposed to at this time, so we're looking for a more local ophthalmologist.
But do I want to just wait around for something to happen that can jeopardize the little amount of vision that Hanna has?
So, I'll suck it up, and bring her in. At least Hanna wont remember her.
Hanna's vitreous humor (the clear gel that fills the space between the lens and retina) isn't clear, and it never has been. It's cloudy and there are "stalks" attached to her retina that could eventually pull, and cause retinal detachment. This is the reason our optometrist wants someone keeping a closer eye on her and another opinion.
A vitrectomy may be an option which would remove some of the vitreous humor from the eye, and cut those "stalks" to take pressure off her retina. We haven't discussed it fully, so we are yet to learn the risks involved or possible side effects.
I guess we'll have to, yet again, wait and see.
At the end of our visit, I had him resize Hanna's glasses. He agreed that they were ridiculously too big, and took them way in. They are perfect now, and she's got no excuse to not wear them - only when necessary of course.
My mom and dad, and Timmy and Yuli took off for a short getaway to do some skiing and boarding in Montreal, so the rest of us took over dog, pony, rabbit and cat duty.
My job was the dogs. It's so much easier for me to spend the nights at my parent's house because it's a second home to Koda, and we're right next door.
Koda's been having to be tied at home because I think the wolf in her (that's my excuse anyway) just can't help but wonder, making some neighbors a little bit unhappy with us. So. To avoid having her shot, she's being tied while she's outside. Usually, every morning she runs through the field to visit Luna and Shelby until they go in to eat. Then she makes her way back home to eat with us. Apparently though, she was making detours on the way home. Bad idea, Kodes.
So, this meant no more morning visits with her friends.
It goes without saying, having to spend a few nights at my parent's was going to make her one happy puppy.
Shelby is a very senior dog now, and can't be left alone for too long. She also has trouble going up and down stairs, so the easiest thing for us to do was sleep downstairs in the living room.
The girls were pumped to go! We got there a little bit late, so they really couldn't do much aside from get ready for bed and go to sleep.
Harder than it sounds.
Ben fell asleep on me earlier than expected, which is great - if I can put him in his crib. No crib, means I can't move without waking him up. The girls were good about this though, and pretty much stayed put, although Gracie and Hailey didn't get to sleep until about midnight. Hanna loves her sleep, so this wasn't an issue for her.
Shelby started bugging to go outside about an hour before that. I would let them all out, then in. Shelby wouldn't come, and since she's mostly blind, and deaf, this is a problem!
I had to wrap up sleepy baby and go out and physically get her.
She did this for a good hour. Back and fourth, crying at the door like it was a life or death emergency.
Finally, I figured out that the "emergency" was that the garbage was at the road, and she figured it was her job to eat it. That was it! I called my poor mom at 1 in the morning to figure out if this was a norm for Shelby. She assured me it definitely wasn't and to keep her inside for the rest of the night.
At this point, Hailey was up again, and wanted to sleep with me, and Ben was awake and ready to play.
So was Luna.
Forget about my 30 Day Shred I was waiting to do! Forget it.
I did get Ben back to sleep eventually, but since Hailey wouldn't fit on the recliner with Ben and I, the only other option was the loveseat. For all three of us.
It wasn't too bad. Hailey slept (if you could even call it that!) in a pretzel type position for most of the night. Her head was lodged between one of my knees and the couch cushion for the rest of it.
I felt so bad for her, and was so surprised that she could even function in the morning, let alone be the first one up with a big smile and a "good mornin' mum!" in the morning, excited to go to Co-op.
The girls weren't quite as "pumped" to go this night. No one slept good the first night, so we had to change something.
We set up the two loveseats together to make a "bed". I let them have a treat and watch a couple shows before bed. It was working out much better!
Until the dogs came in for the night.
It started like this.
I had just come downstairs from a shower, after doing my Shred (yay!) and Matt was on the couch with Ben on his chest asleep.
I walked over to Matt to take Ben so he could go to work, and noticed a small bunch of feathers on his pillow next to his head.
I picked it up, and figured it came out of the pillow, and just tossed it onto the floor.
After grabbing the baby, and continuing into the hall, we noticed Shelby and Luna munching on something.
Then we noticed more feathers.
Oh it was disgusting! And to think, that was the feathers on Matt's pillow! Gross!!
Anyway. That was the most drama that night. Smooth sailing after that!
Perfect. No issues, no drama. Everyone slept good after filling tummies with popcorn and heads with Honey I Shrunk the Kids.
I'm sure some interesting dreams were had by all of them after watching that.
Our duties here are done. Tonight we return to our usual chaos at home, and will be sleeping like rocks tonight!
Thank you, dogs, for a change of scenery for a few nights.
In my last post I mentioned that Hanna got a very special gift from her wonderful grandparents.
Matt's mom keeps up with the blog and saw in this post that we thought she would do well with some sort of tablet. Without even thinking twice, she was on it. She started her research, and together we decided that the LeapPad Ultra was the way to go. Hanna has absolutely no experience with touchscreen, and Lord knows it should be durable, so we figured something made for kids is where we should start before spending a fortune. (I was initially thinking an iPad.)
It's been taking a little while to get used to, but I think she has it mostly down now. She figured out that she can't touch the screen anywhere other than where the stylus is, or it will disrupt her objective with the stylus.
It's been causing a little bit of frustration, because it's so sensitive, but she's getting it. And she loves it.
I think it's just what she needed!
She calls it "My special computer from Gramma". We're not forgetting about you, Grandad! She knows it's from both of you!
Gracie has a separate profile so that she can save her progress without affecting Hanna's. I want to know exactly where Hanna is, and make sure she's doing everything herself before moving on to something new.
Her control in the stylus has improved so much already, and she can slowly and steadily trace letters and lines with it - as of tonight.
She still gets frustrated, and impatient, so that's when we take a break, but she'll be a pro before we know it. It's going to help so much.
Thank you so much, guys!
You don't know how much it means to me. I've been struggling with her schooling and knew I had to change things up for her, and I really think this was a wonderful place to start.
You made it happen, and I appreciate that so much.
It's a bonus that there's games on there, and it's a nice treat for the other girls too at the end of the day when we're settling in.
I can't wait to see how she does with more practice and learning!
The girls have been counting down the days to Valentine's Day this year. Gracie even ordered some earrings from Avon, and made sure that they would be delivered in time so she could wear the heart pair today!
They woke up this morning and had special Valentine cookies from us waiting at the table, and had breakfast. You can just go ahead and assume that they ate cookies for breakfast...because they really actually did.
After that, we did our regular school routine. Gracie was a little grouchy about having to have school on Valentine's Day, but she did what she had to do. She was lucky and got to take a break when Matt's mom came over with Brendan, (my brother-in-law) Valentine treats, and something very special for Hanna, which deserves it's own post.
They stayed for a little visit, and then we finished school.
Kristyn, Michelle, and all the kids were at Kristyn's waiting for us to show up so everyone could exchange Valentines. We still had to eat lunch though, so I hurried and made the simplest, fastest lunch I could. Bagels, and leftover rice, if you had to know.
I know. Mother of the Year.
When Ben was finally finished eating, we got ready to hit the road. This is an event all on it's own with all the boots, hats, and baby snowsuits! I'm lucky that we all live so close. Kristyn's house is about 8 minutes away. We had to make a few stops first though.
My mom and dad needed their Valentines, so we stopped their first. Next, all of my aunts and uncles, and Nanny on the next street over. The girls had Valentines for everyone!
Then, we were on our way. They all got to decorate cookies at Kristyn's and of course had treats for eachother. The girls felt so good to give everyone their Valentines. They had a lot of fun with it this year. Hailey even "signed" hers.
It was a good (and busy!) day out with all the kids together.
After our visit we came home and I started dinner which I can assure you was better than today's breakfast and lunch! And the girls went outside. I had to show you Hanna's swing pumping in that snow suit! Pretty darn good!
I can't say enough how great of a winter we're having. I heard we've had a total of 49 inches of snow fall so far. That's nuts! It's great though. I wouldn't have it any other way.
Anyway, the girls came in for dinner and got some hot chocolate, of course, and the rest of the night was quiet! My day was spent with all of my favourite little Valentines, so it made for a perfect day.
And...I have to include a couple pictures of Benjamin too, you know. Just for good measure. He's always here, and always happy.
The three girls are outside playing in the massive amount of snow we got - again, and Benjamin is asleep - in his crib.
I have a homemade iced-coffee at my side, and General Hospital on the TV. I don't remember the last time I was able to sit to watch TV in the middle of the day like this.
I feel really....weird!
Anyway! What a better time to give a good update!
I'll start with Hanna's Braille.
Maryse is coming every other week and she's covering a lot in her hour when she's here working with Hanna.
Hanna knows all of the numbers of the dots in a braille cell, which means she'll soon start to learn the alphabet.
Until then though, she'll continue to practice the numbers, and begin to learn money - the different coins, the difference in the look and feel of them, and their value.
They're also working on strengthening Hanna's fingers and hands. She wants her tying at least a knot on her own by the summer. Think she can do it?
We've run into a little bit of silliness from her while Maryse is here. Like, she'll purposely give Maryse a wrong answer with a big smile on her face, or keep repeating what Maryse is saying, while holding back laughter. She gets bored, and Maryse does a lot of the same things over. And over.
I don't really blame Hanna for getting tired of it, but repetition is how she will learn, and she can't start to be defiant. So right now, my main mission is to make her realize that it's only for a short time, and somehow reward her when they're done.
We've been actively using her cane lately, to get her used to it when out in public. My mom was taking her to the Early Years Center before Christmas, and she was doing a great job with using the cane then. It's hard to remember to bring it with us, but I bought some nice, shiny stickers, and she decorated it up, which I'm hoping will help make her a little more willing to use it.
Well, my alone time only lasted a few minutes - as expected. :)
I took a couple minutes and made them some hot chocolate, and then realized I had a picture from last year that I could redo this year, so I did! Here it is:
My girls are growing up!
And my table has even more "memories" engraved and stained onto it!
Hanna started speech therapy a few weeks ago and is doing great! I've also noticed a difference in her drawing and colouring. She's really improving all around. For school, I think we may have to go a different route and perhaps try doing all of her writing, and anything visual with a tablet of some kind. Something back lit will really help her. We're still trying to figure out how to get our hands on one sooner than later.
As for memorizing - she's amazing. She knows her vowels, and every day she learns a new letter sound.
Benjamin loves his baths.
Hailey's keeping us on our toes. She's stinker.
That's all I can say.
Gracie's becoming quite the little book worm. We have an alphabet series that features one letter in each book, and builds the story around that letter sound. She made it to book Q in two days! I'm pretty proud of her.
Other than that, we've been keeping busy outside. The girls love being out, but it's a bit too cold for Ben. I try to get out when I can, but I'm mostly getting stuck inside with him. Gracie's been going out with Kristyn when they go skating at Nanny's pond, and I finally made it out with her. The other three stayed in with Matt.
The last time we visited SickKids was back in 2012, for a Cardiology and Genetics follow-up.
Well, the time came once again to make that visit.
Matt had just returned back to work from a three week shut down, so we decided he shouldn't take a day off to come for this appointment. My parents took us instead for a day trip out, and I'm so glad they did. The roads were extremely messy on the way there, and it felt so good to have my dad drive.
We (my parents, Ben, Hanna and me) left at 3 am, to make it to her first appointment at 8:00. We made it, barely, but we made it.
She had her ECHO and ECG at this time. She did so well. She didn't need any sedation, which helped a lot, and kept her happy to follow any directions thrown at her. The ECHO took about 45 minutes to do, and the ECG was quickly done after that.
We met with her doctor a short time later, and he was really happy to see how well she was doing.
Right away he told us how good she was doing, and how she was carrying a conversation with him so well. He asked if he could take her home with him, and her attitude toward him changed pretty darn quick! It was actually really funny.
When we told him that she's still a puzzle to Genetics, he responded with "Well that just shows how sophisticated the human body is, and how much we don't know or understand".
I liked that.
He then continued to tell us that her heart is going to be just fine.
Every hole that she once had is now closed up, except for a couple VSD's that are muscular, so not as serious as membranous VSD's.
He still wants to see her in two years for another follow-up, but told us not to restrict her activity in any way, and basically treat her like a normal healthy child (which we do). This was great news!
I made that appointment, and then we were off to Genetics.
My least favourite place.
Hanna was colouring when they came in to greet us, and they instantly told us how great she looked. We continued into a room to give them a proper update.
They concluded that development wise, she's pretty darn close to being at the same level as her peers.
Growth wise, she's nowhere near.
Her weight and head circumference are both way off the charts, and her height is at 3rd percentile.
They mentioned the possibility of a repeat MRI, for follow-up reports, and more intensive genetic screening that's available now in the research stages for clients at SickKids.
This test would screen her entire genetic makeup, which would almost definitely find a diagnosis. It would also give us a look into her future, which is extremely scary to me. They would be able to predict which diseases or illnesses (if any) she would be at a greater risk for, and how she became...her.
I'm not a scientific person. I like to look at things as they are. In Hanna's case, it's a mystery. Hanna is Hanna because that's how she was supposed to be. She's her own unique little miracle that I'm so blessed to be able to love. God made her how she is because that was His plan, and you know what, that's all I need.
I don't need to know all the answers.
Not knowing is scary.
But I think knowing too much, is even scarier.
I want to keep our foot in the door with Genetics because if God forbid, something does start going wrong, we can call, and they can have her tested and probably find answers within days. Otherwise, we would be going from doctor to doctor, on waiting lists for tests, etc. This is a great benefit of her being a patient here.
Her geneticist did go on to say that at first they were thinking she could have some sort of metabolic disease. I remember the testing for those, and it was the worst time of my life waiting for those results.
Even if it was something like that now, that wasn't found, he said that by five years old, we would be seeing the effects by now because they are all very progressive diseases. Hanna is not doing anything, but growing, developing, and showing them that she's capable of a whole lot more than they ever thought she'd be. She's also the healthiest kid you'll meet, being able to dodge almost every illness that makes it's way through the house. She'll be the only one that doesn't get it.
I took some copies of the consent forms for the screening to go over them with Matt. We may or may not participate in the test. If we can help find answers for concerned parents down the road, I would love to do that. LOVE to do that.
But answers for me, honestly aren't important. As long as she keeps showing us that she's healthy, that's good enough for me.
If that ever changes, we can worry about it then. Right now, I just want to live, enjoy, and carry on.
We had Ayden for a few nights, during the school week, so the girls had an extra student in their class for a few days.
Apparently he told his teacher "Don't worry, my sister home schools, so I'll still be doing work!" So she sent him with some homework and he worked on it while we did school here. It worked out quite well actually!
They got to do some sledding when their work was done, and I think he had a good time!
I know everyone is just over the moon when he comes over. It's a nice treat for everyone while he's here.
The first day Ben was a little cranky with Ayden, which really surprised me. He's such a happy, good little boy, so when he started making strange with Ayden, it really caught us all off guard!
The next day he was better though, and eventually just waited for Ayden to look his way, and would return that look with a great big grin.
What do you think? Do they a look a little alike?
Ben also discovered, while Ayden was here, that he can move all over the house without having to be on his hand and knees.
He learned that the bathroom stool makes a great walking aid, and pushed it (literally) all around the house.
I actually caught him the first time he took it from the bathroom, so he still had his "Oh look what I can do!" expression on.
Matt downloaded Ayden the old Pokemon series. I guess it's still a thing now, but different, so when he realized that Matt was getting him the entire original collection, it was like Christmas again!
They watched a few episodes while he was here, and the girls realized that they are definitely not Pokemon fans.
They are Ayden fans, most definitely though, and we were all so glad to have him again!
Thanks for making our week, Ayden, and we're all looking forward to your next visit!
She worked on the kids blankets for months, (she made nine of them!) saying left and right that they were just "silly" and she's expecting them to be abused and thrown out when they're tattered and torn, making sure we don't take any extra action to take care of them.
Every single child was completely thrilled with their very own personalized blanket.
My girls use them every night when we're settling in before bed, and they definitely take care of them.
She made Gracie a mermaid one.
Hanna got a "dancing bears" one. The "dancing bears" is a musical Christmas decoration at my mom and dad's that turns on to play music, and the magnetic bears dance around while it all lights up. Pretty awesome if your name is Hanna.
She waits all year long to take out the dancing bears, and then it's a really big deal when they go back to "sleep", My mom waits for her and lets her help put them away, so she's not traumatized when she goes over and they're not there.
Now, she can have them all year long.
*Note* The girl bear does have another ribbon on her other shoe. We have to attach it again. What can I say - the girl loves her blanket!
Hailey got a pony one.
She knew immediately which ponies Nanny included too.
"Pintie Pie" (Pinky Pie)
They were definitely a hit, and will be kept forever.