A friend sent me this, and especially given the news we are expecting today, it means even more:
‘I loved you the minute I knew I was pregnant. I loved you the minute you were born. Then I saw your face and fell in love some more. You were only a minute old but I knew I would die for you. When you choose to have a child, you make a conscious decision to allow your heart to walk around outside your body.’
Trey had his cognitive tests yesterday, as part of the screening study for the intrathecal trial going on at UNC to treat brain disease in Hunter Syndrome. With Hunter’s, either cognition is fine, or it’s not. However, the answer to this question, is not always clear upon diagnosis. We’ve been waiting over 4.5 years for final confirmation from the doctors.
Trey had one round of tests in the morning and one round in the afternoon.
For the morning tests, the tests they use to decide whether or not Trey will qualify for the IT trial (and the harder tests for Trey: fine motor, sitting down, more academic kind of stuff), Trey was brilliant. Dr. Stein commented repeatedly on his amazing concentration and attention. There was a few questions near the end that he could have gotten if he wasn’t an hour and a half into testing and had more focus (one he even concentrated on for about 15 seconds before you could see in his eyes he was done, and stopped 3/4 of the way to the answer), but there were also a few questions that he answered that I didn’t get, but Dr. Stein turned the page so quickly after Trey having got it right, I didn’t have a chance to figure out why that was the right answer!? So either he guessed or he’s smarter than me.
The afternoon tests weren’t awesome as Trey was bored and acting silly, but he did okay, and those tests aren’t used to include or exclude him in the trial. They are just used, from my understanding, to help give a better overall picture of development. They included all the gross motor and ‘fun’ stuff for Trey: running, jumping, skipping beading, cutting etc.
Anyways, I think the morning tests were as accurate a test for Trey as he could ever do. Which is what I was hoping for. Given that Trey bombed the last round of tests due to lack of sleep and having the flu, I have spent the last 4 monthes preparing for this round of tests. With his speech pathologist, his tutor, I made an appointment 6 weeks ago to have Trey’s ENT check his tubes to make sure he didn’t need surgery, and then another appointment again last Wednesday to make sure his tubes weren’t plugged, he didn’t have any infection, and to get a prescription for antibiotic ear drops, just in case Trey did get a cold while we’re here. Three weeks ago Trey was fitted for new ear moulds, just in case his were getting old or too small (they ring and given annoying feedback if this is the case). I planned with Trey’s speech path, who is AWESOME at keeping trey motivated and working even when he doesn’t want to, how to keep Trey going during hours of development tests. When Ave and Sadie got a cold a week and a half ago, I started pumping Trey full of a remedy I use to keep us healthy, oregano oil and vitamin C and kept this up until yesterday. We washed hands after touching anything. We didn’t go out for dinner and ate only healthy food for the past weeks. I wouldn’t let Trey watch TV for the past 4 monthes because I wanted him to be stimulated as much as possible.
When those morning tests were over, I sighed, repeatedly. I could finally relax. The tests were out of my hands and I had done all I could do. It was such a feeling of relief, I cannot even describe. All day, I sighed and felt soooooooooo much lighter. Phew. Over. We went to Five Guys for burgers (Trey’s favourite food), which, if you’re on the East Coast you should stop by. Ry’s fave burger joint has always been ‘In N Out’, but that title may have been overtaken by Five Guys. The burgers were the best I have EVER had. Then we split a banana split and went home and watched TV.
I spoke with my good friend Jen, who has now become my rock getting me through this, and I told her I feel like I’ve been training for the Olympics (because we’ve had this diagnosis for 4.5 years now and this is basically the final confirmation of whether or not Trey’s brain is affected by the Hunter’s). When my event ended yesterday, there was so much letting go. Now I’m just waiting for the results.
