MPSIIFund News

We’ve got dates for our next trip back to UNC. Testing dates are Aug. 17-18. Thank you everyone for your overwhelming positive support. I probably won’t post about my  personal journies with this part of our life for a while because I do this part on my own and like to keep it within. But I do appreciate your support and love. So thank you.

T4T update. My sister, Michelle,  just emailed me the most recent silent auction list: yoga and fitness memberships, Carhartt clothes, ipods, cameras, bikes, nutrition consult, gift certificates to Grouse Mountain, golf courses, the Aquarium, art, baby baskets and baby clothes, kids gardening sets, fishing gear, cabin rentals on the Island and in Tofino with tour packages, web design services, photo shoots, yard services, and more! And that’s not to mention the raffle in which you can win airfare for 2 to anywhere West Jet flies!
In addition to the raffle and silent auction, there will be live entertainment, tacos (Save on Foods, Que Pasa, and Blue Goose Cattle Company are providing all the food) and drinks (Canadian Springs, Happy Planet, Sea Cider Cidery and Whistler Brewery are all sponsoring us), a sports area where soccer and hockey can be played, crafts where there will be beading, coloring, weaving and more, a circus area where instructors can help you learn to juggle and unicycle (for all ages ;)), a parachute area, face painting, balloon twisting, and at the end we’ve got 3 pinatas to smash!
T4T 2010 is going to be awesome. It’s going to be so much fun and there will be such great deals, you don’t want to miss it! Saturday, May 8 from 3-6pm at Lynn Valley Elementary School. Hope to see you there! 🙂

For those of you I’ve talked with since Thursday and for those of you who read my blog often, I wanted to give you an update. I’m much better than I was. Although I’m still a bit fragile, I’m better. There were a number of factors that potentially went into Trey’s lower results: he had less than 8 hours of sleep Tuesday night before IQ testing on Wednesday (when he usually gets around 11), he had a gastrointestinal bug that had him throwing up Monday, with diarrhea Tuesday to Thursday, he had the more challenging IQ tests in the afternoon, which is a less than stellar time to test kids as they are petering out (he’d also had other tests in the morning), in addition to the fact that historically, these harder IQ tests have happened in the morning. Also, Ryan was not in the room during the testing, so we have no idea what happened. I know that in the past tests Trey has needed motivation to keep going, and lots of it, and I don’t know if the doctor administering the tests pushed or not or how hard.
So, because we have not noticed any change in Trey, and because there are so many potential factors that could have effected Trey’s results, we’re going to hold onto that until we go back. It’s about finding hope, right? So this is where I’m at. Holding onto hope and believing in Trey.
Doctors have the ability to shatter my confidence, but Trey has the ability to bring it back. I believe in that little guy.
Thanks for all your love in the past couple of days. I’ve needed it.

I’d forgotten hell could look so friendly and sunny and full of smiling people. I looked out the window while I was sobbing and talking to Carolyn on the phone, and saw my neighbor out in the beautiful sunshine, in the middle of a friendly conversation with a person passing by. I should have known by now that hell can look like this, since I’ve been plunged into it so many times, and it does become familiar quickly once you’re back, but when you’re not in hell, you forget, just a bit, what it’s like.
Dr. Muenzer called with Trey’s development test results. They are lower than last July. Now, this doesn’t necessarily mean anything, because why would anyone want to give me specific answers when I’ve been wondering and waiting for over 4 years, but it is possible this represents a decline in Trey’s development. I don’t have the energy to give more detail, but it does mean we will be going back to UNC for more developmental tests.
I also wonder how many times the carpet can be pulled out from under you before you collapse. I keep getting up, but the more it happens, the more I wonder. The really ironic part of it, having been through this so many times before and still being here, sitting here typing, is that unless I ended my own life or got cancer or had a heart attack or something similar (which, if you read the literature, parents of “special needs” children have skyrocketed rates of cancer, another thing to look forward to), this can just keep on happening. Now, obviously, I’m in the depths of it right now, and obviously I don’t have a choice but to get up and keep going, but it does feel like it’s getting harder. It’s like this sick joke that someone keeps playing on me over and over and over for years and years and years and I keep falling for it. But what makes it worse is that there’s no one I can ask to stop doing it.
Fortunately, Jen was able to slap (over the phone and in a good way ;)) some sense into me. That will help when I try to fall asleep tonight. Jen, thanks. I just wish I had recorded it to play back to you for when you call me. Cause it was perfect.
Mich, Ry, mom, Carolyn, and Jen, thanks for being there today. I needed it.

On Saturday, May 8, 2010, we are hosting our third “Tacos for Trey” fundraiser and we are hoping you can make it!
On Valentines Day in 2006, just before his second birthday, our son Trey began diagnosis for Hunter Syndrome (also known as MPS II), a rare and degenerative disease that can significantly decrease quality of life and life span. In February 2007, just before his third birthday, Trey began Enzyme Replacement Therapy (ERT) for Hunter Syndrome at BC Children’s Hospital, the first child in Canada to begin this lifesaving treatment. Although wonderful and exciting, ERT is not a cure.
Once we adjusted to the diagnosis, we committed ourselves to raising awareness and funds for MPS II research. This is why we hold “Tacos for Trey.” We have created an MPS II Research Fund within the Canadian MPS Society, a registered charity in Canada, and plan on fundraising until we find a cure for this awful disease. As this is a rare disease, the government does not fund any research to find a cure.
Here are the details of the event:
“Tacos for Trey”, A family friendly Mexican Fiesta
Date: Saturday, May 8, 2010 from 3:00-6:00pm
Location: Lynn Valley Elementary School, North Vancouver
Since its creation in 2007, the MPS II Fund and “Tacos for Trey” has raised over $115,000 and has given away $114,000 to research. We are really excited about the research we have funded and are hopeful for Trey’s future. He continues to grow tall and develop well. Trey’s joints are within normal range, and since beginning treatment, have maintained range. His features have softened and to most people, he looks like every other kid around him. And at the age of 6, when we were told to expect a very different outcome, Trey is doing wonderfully and we feel great.
However, Trey is not like every other kid around him. Every year we go for tests to cardiology, opthalmology, orthopedics, ENT and more. Trey’s hearing and heart valve problems have progressed since he began treatment. ERT is a lifesaving treatment, but awesome as it is, and grateful as we are that he has it, ERT is not a cure. And we need a cure. We want to see Trey grow up with his siblings. We want the opportunity to see the path Trey chooses as an adult. We want to die before he does.
So, please join us at “Tacos for Trey”, where we will eat, drink, play, bid on auction items, and enjoy good company, and where you can know that after you leave, you money will be granted to a brilliant researcher who will lead us closer to finding a cure for Hunter Syndrome. If you cannot attend the event but would like to donate to research for a cure, you can donate online at: www.treypurcell.com. We look forward to seeing you there!
Sincerely,
Deb and Ryan Purcell
If you cannot make the event, but would like to donate, you can do so on the home page of this website.

Additionally, if your company would like to sponsor “Tacos for Trey” and be recognized at the event, please contact Deb at: dcehak@telus.net.

To lighten the heavy mood a bit. Coulda woulda, shoulda…
[youtube]http://www.youtube.com/watch?v=4-94JhLEiN0[/youtube]
Maybe if I ever get remarried. Just joking babe! 😉 Renewing our wedding vows… that’s it!! 🙂

On Thursday the boys had their weekly art class. I mentioned that next Thursday Trey has to get the the hospital early so he can get back for his last art class. Why infusion on Thursday, my friend asks? Because Trey is going to UNC from April 4-8, so will be missing his Monday infusion that week. This is a GOOD friend who knows what the words UNC mean. Fear. Huge, all encompassing fear. She said something like: “Wow. How are you doing?” And I said fine, because I really have been, which is all too great.
Then on Friday morning, possibly because I have been so stressed with our upcoming fundraiser this week, or maybe because I said what I did yesterday, but the fear came back a bit. Trey did something and the fear came back. I wrestled with it and brought myself back to being okay, but looking back on it, it’s just not cool.
I was thinking about posting on this subject, but was hesitating because of how much fundraiser stuff I have to do. But this morning I got an email from a friend whose son is young and has Hunter’s, but no definitive mild or severe diagnosis, which means she is in the middle of feeling so scared she can barely function day to day. So I decided to blog.
On Friday, I can’t remember what Trey did. But it was basically nothing. That’s why I kept thinking about it. Maybe he wasn’t paying attention and spilled a glass of water or something. Then I get this email this morning and this mum is literally freaking out because her son doesn’t like to get dirty and didn’t want to do what she wanted him to do. I may be simplifying things a bit, but I’m doing it to make a point. People are quirky. Maybe it’s here I should mention that this past week, Avery has clawed Trey’s face so he looks like a tiger and Sadie has been screaming at least 4 hours a day, to a point where I’m wearing her in a backpack a majority of the day and to a point where I almost lost my mind last week. For most parents, this would be negative (and at the moment for me, it was too, and boy do we have a lot of snuggles and conversations to have when this fundraiser is over!). However, it also makes me just go hmmmmm. It would be funny if it weren’t so shitty. If Ave and Sadie had Hunter Syndrome, I’d probably be freaking out more than I did with Trey!
What’s funny (not really, but you know what I mean) is that I used to freak out that Trey’s brain was affected because he didn’t care if he was wet, or dirty, or if his shirt was on backwards. Now this mom is emailing me freaking out that her son’s brain is affected because he’s the opposite of Trey. He REALLY cares about this stuff. I used to freak out Trey’s brain was affected because I thought he was demonstrating signs of aggression that he didn’t used to. Ry told me it’s because he’s a boy, but I didn’t know that. Now Ave is even more aggressive and violent than Trey was at the same age!
Can you imagine if every time your child dropped a piece of food on the floor, every time they had a tantrum, every time they didn’t want to do what you wanted them to do, every time they got mad, every time they forgot a word, can you imagine if, in every single instance that your child was not perfect, you thought your child was going to die? This is what’s it’s like when your child has Hunter Syndrome before you know if their brain will be affected or not.
The fear is founded, in that our children have Hunter Syndrome, and until the age of approximately 5 years old, it is not known whether or not their brain will be affected, so that in every action that they take, it is possible they are demonstrating potential cognitive decline. But it is also unfounded, or at least completely crazy. Just because our kid forgot the word for hamburger or spilled a glass of water, does not cognitive decline make.

The weather has been amazing this past week. And I’ve been doing yoga at least 3 times per week since the end of January. I feel strong and flexible and good. And I’m slowly letting go of my fear. My fear of Trey’s brain being affected (if you’re new to the blog, you’ll need to read back to get details about my fear). I was lying in savasana today, doing my gratitude practice before the yoga class began and I realized that I haven’t had serious fear in a long time. Well, long time relatively speaking. 🙂
The last time I can remember it was December. I’m sure I’ve had smaller moments since then, and even now I have moments, like when I hear someone frustrated with Trey, but they are momentary. A bit more than a passing thought. I can’t think of any other examples right now. Cool. Before, when Trey would put his shoes on backwards, I’d go straight to fear and not be able to get rid of it for a while. Now, I just go with it. I have so many examples of that. Trey waits super long to go to the bathroom, so that by the time he gets to the toilet, he’s dancing. He used to start peeing before he could sit on the toilet. That used to put me into a place of all consuming fear. Not anymore. This is him. He’s got quirks. Like everyone else. Our neighbour told me yesterday, that her child, who is 6 monthes older than Trey, still wears pull ups at night. Like Trey. And Ave (Sadie’s doesn’t, the little monkey). I wish I heard that when I was so full of fear. But now it makes me chuckle.
That gripping fear that sidelines all my other thoughts, and consumes me for minutes or hours or days, depending on what happened, until I can get my thoughts back on track, has not been with me in a while. It’s slow going, but I’m letting go. And it is amazing.
Now my challenge is not to be complacent. Not that I am or think I will be, but it’s something for me to pay attention to. I don’t ever want to take life for granted. Shit happens. And not just to Trey. So I’m gonna live and love it.
Love to you all,
Deb

This article was posted on the Vancouver Aquarium’s April 2010 ‘Waters’ online members’ newsletter. Click here to read the article, under the section entitled ‘Aquarium Heroes’.

Yesterday we spent 3 hours at the audiologist. Trey was okay because he got to change it up a bit I think (he got to go have a hearing test and the other kids only got to play :0), but Ave and Sadie were a mess by the end… the time when I needed to concentrate on learning to use Trey’s new hearing aids and his hearing test results. Fortunately another woman was able to come back and play with the kids while I listened.
Back in October Trey lost one of his hearing aids and because they were getting to the outside of how long hearing aids and their technology are considered “good”, we were recommended to get new aids. Unfortunately, we’d just spent our insurance (which is $600 every 5 years, which is how often you need new hearing aids, which doesn’t even cover 1/3 of the cost of new aids and doesn’t include any kind of repair… yikes!) max on fixing his old aids about 2 monthes before, so would have to pay out of pocket (about $2,500) for the new aids. Trey’s audiologist felt bad, so lent us aids until now.
The new aids are pretty cool. They have speech recovery, which I don’t understand completely, but if Trey’s hearing goes down, it will help him hear the more difficult to hear sounds (like ‘s’). They also have telecoil, which helps him hear when speaking on the phone, which is big for us. And I can control the volume with this remote so that if Trey has a cold and his hearing is down, I can bump the volume up a bit. And they’re smaller, which is cool. And there’s a little light at the back of the aid to tell me if the battery is low. Trey wasn’t as thrilled with the colour as me (the colour of his hair) because Trey wanted red and blue aids, but I figured that since they’re so expensive and we’ve got them for the next 5 years or more, he can add stickers if he wants color!
Trey’s hearing test results were a little more… vague, frustrating. I don’t really like hearing test results. Trey’s hearing can go down and back up due to colds, but they can also go down permanently, and it is not clear when that is happening (because hearing can be affected for monthes after a cold is over). And if he’s bored, the results may not be as accurate because Trey may not be paying as much attention to the really quiet sounds.
So when you get hearing test results, you never really know if the loss is permanent. In the past, Trey’s hearing has gone up and down a bunch. Many times Trey’s hearing has gone down and over the course of monthes, come right back up. However, there was one period for about 9 monthes when Trey’s hearing was down and in the summer of July/08, when Trey hadn’t had a cold in monthes, it was decided/realized/assumed, that Trey’s hearing had permanently gone down.
Then yesterday’s results. His high frequency hearing loss, where his loss is moderately severe, stayed the same, but in the lower frequencies (especially at 250 Hz), where his loss is mild, his hearing seems to have gone down between 5-15 decibels (dB). 5dB of difference can mean boredom and lack of listening… it can just be testing variability, but 15dB usually means something.
Trey’s audiologist tested his high frequency hearing first and she said that by the time she got to the low frequencies, he was starting to get bored. But, she said she thinks the results are accurate. She said she tested all the sounds two times each. Before, when he was hearing low frequency sounds at 25 dB (normal for a kid is 15 dB and normal for an adult is 25dB), now he’s hearing them at between 25-40dB, depending on the frequency.
Bummer. I think. But then again, you never really know, right? When we go to UNC at the beginning of April, Trey will have another hearing test, so I will wait to get those results before officially being bummed.
Two good things that came as a result of the tests were that Trey tested great and with aids he hears well. He was in testing booth for about 45-60 minutes and Christine, his audiologist, said he was super cooperative. I think I annoy him in these situations a bit, so this time I let him go in on his own (plus, he’s now pretty much at the age where he’s fine on his own and parents are just a distraction), and he did great. Then afterwards he came out to tell us he was done, but that he was going to help Christine program his new aids. He didn’t even want to come out and play with the toys. It seemed like he was proud to go in on his own and apparently he did great with that. So maybe in UNC we’ll let him test on his own.
And, with his new aids, he can hear at 20dB (as I mentioned above, normal for a kid is 15 dB and normal for an adult is 25dB). I was in the booth with him this time and he could hear the quietest sounds, which was great for me to hear.
Long winded, but that’s all for now!!
Deb