Clinic Visit

Hi everyone,

I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)

The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)

It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..

I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.

Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.

As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.

He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)

Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.

He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.

I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.

Thanks and Love,
Courtney