Friday, January 17, 2014

the dreaded sickkids visit

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. 
She's perfect.


Jenn said...

She is absolutely perfect Jenn.

Mo said...

Well said, my friend. Now, carry on!