MPSIIFund News

Phew. It’s done! 🙂 What a day we had. We started with dropping Ry off at an appointment and going to rheumatology. A rheumatologist checked Trey out, then we saw Trey’s OT and PT. All three of them said that this Enzyme Replacement Therapy must be doing something because Trey’s joint issues are not progressing. Trey is maintaining range completely. No progression in a progressive disease. Doesn’t get better than that.
Then Trey fell head first onto a rock, but fortunately we had been playing right beside the Children’s Hospital ER, so I went in there, got some ice and confirmed what signs to watch for with a concussion. Yikes!?
Then we had a dentist appointment. Trey’s teeth are great. They are healthy and have good spacing!
Next was osteopath, who told us that everything is feeling good and that we don’t need to come back for 3 monthes.
And last but not least, we met with the store manager and assistant store manager at Save on Foods (a BC food chain owned by Jim Pattison) regarding our upcoming fundraiser, “Tacos for Trey”, on May 8 this year. Aside from the 120 pounds of organic ground beef we already have confirmed donated by Blue Goose Cattle Company, Save on Foods has agreed to donate ALL other food and food related items (plates, forks etc.). AND, they will hand out fliers to their thousands of weekly customers leading up to the event. They are unreal. Unreal. I am so blown away by how supportive and amazing they are. So so cool.
So that was our day. And it was beautiful and sunny outside. Not a bad day. And Trey’s head is okay. He’s got a huge goose egg, but otherwise, he’s all good!

It was yesterday on Monday, March 1. What a big one. Five was big and six is big. Bigger than most. Why? Because of the wait. Because of fear. Since before Trey was two, we have been told that by the age of 5 and at the very outside 6, that if Trey’s brain is affected, it would have shown up by now. It would be obvious. After Dr. Muenzer told us back in July/09 that he did not think Trey’s brain would ever be affected, that was a huge relief. Probably the biggest relief.
I believe in Trey. However, Trey does have differences. He puts his shoes on backwards. His speech is delayed. None of these tell us Trey’s brain is affected, but when he does something, anything, that is not brilliant, it makes your brain go there. To fear. Since Dr. Muenzer’s word back in July, my brain has gone there way less. Way less. But then I got a scary email in October/09 from Dr. Escolar about another child whose development followed a similar path to Trey’s, who’s development was now declining. Although this child’s development started to decline within the normal limit for Hunter Syndrome, before the age of 5, when you’re so used to living in fear, I went back there.
After speaking with Dr. Escolar, I did find my way back to believing in Trey within a day or so, but yesterday, on Trey’s birthday, when I had a moment to reflect, it was amazing. See, Trey’s going back one more time to see Dr. Muenzer for the IT trial neurocognitive assessment, so I didn’t think I’d be able to relax much on Trey’s birthday. We’ve got one more hurdle to jump. But yesterday was significant for me. All those years of me asking doctors: “So, at what age will we know without a doubt that Trey’s brain will be okay? What is the oldest age at which you’ve seen a child’s development drop?” The very outside age that any doctor answered was 6. Indescribable. Yesterday was comparable to Dr. Muenzer’s word back in July. I can relax. Let it go. Trey still has Hunter’s, but his brain is going to be okay. God it feels good.
It’s like all these little events telling me that it’s okay to let go of my fear. It’s good and just keeps getting better and better. One more trip to UNC. April 6-7.
Funny how on the anniversary of Trey’s birth this is what is on my mind. Of course I thought of, or we did, other things: we had a party, got Trey a great gift, sang, had cake and all that jazz, but during times of reflection and thought, this is where my mind went. Trey’s alive and doing awesome. His development is okay. I wonder if that, what I think about on Trey’s birthday, will change. Maybe over time. For his seventh birthday maybe. I can always hope!! 🙂
Lots of love,
Deb

An ode to why we homeschool:
[audio:http://treypurcellcom.nationprotect.net/audio/flowersAreRed.mp3]
One of the coolest things about Trey is his confidence and how awesome he thinks he is. With this difference he lives with, I don’t want to take the chance of quashing his confidence, which school was beginning to do to him. It is so awesome to watch my kid, who others may doubt and pity and think is strange or different, believe in himself. So for this reason and others, we homeschool.

Four years into this journey… for those of you who haven’t been with us this whole time, it was four years ago today that we began our journey towards Trey’s diagnosis of Hunter Syndrome.
It’s not the same. Each year that initial pain gets farther and farther away. I recall at Trey’s one year of diagnosis mark, Valentine’s Day made me feel nauseous. I couldn’t even think of celebrating. The second year V-Day still made me feel sick, but not as much as the first. Last year, I could still feel those feelings, but they weren’t sharp. This year… well, I don’t really have any negative feelings. I figured I should post, because today is the marker for Trey’s fourth year since diagnosis, but I wasn’t sure what I’d write. So here I am. Free wheeling.
I wrote a whole blog, but it wasn’t inspired, so I chopped it. That’s it, I guess. This day, at least for this year, is not inspiring. Which, I think, is a big step. I’m glad about that. Ryan and I still will not celebrate today, because it just doesn’t feel right, but it takes doing this, sitting down and writing, to bring back those feelings. I have to dig deep and think hard to find those feelings. They’re not close to the top or at the top like they were before.
I also didn’t really celebrate V-Day before Trey’s diagnosis because when I was at University, I participated in ‘The Vagina Monologues’, a play you may have heard of, that aims to make V-Day about stopping violence against women. The author, Eve Ensler, decided to stop celebrating Valentine’s Day until violence against women has been stopped. And I support that.
So, in honour of Trey and stopping violence against women around the world, we will find another day to celebrate. However, I will celebrate today how far we have come in the past four years. I am thankful to everyone who has supported us through this journey. If it were not for you and Ryan and Trey and Avery and Sadie, I would not be at a place where I can honestly say that on the fourth anniversary of Trey’s diagnosis, I am not sad. I love my life. Thank you for your part in that.
Love Deb

We saw ENT yesterday and Trey will not be having surgery for now. Yeah! After Trey’s 3 years of ERT party (a week and a half ago), I tried one last round of antibiotic ears drops in the hopes that they might help this time and they did (we tried the drops when the fluid first started a month or two ago, but the fluid didn’t stop, so that was that). The smell and fluid was not completely gone, but I’d say 95% of the fluid was gone and 90% of the smell. Trey’s ENT gave us one more prescription for antibiotic ears drops yesterday, that Trey is one right now, for the next 4 days. If that doesn’t get everything back to normal, we’ll see about getting new tubes placed. Trey’s ENT doesn’t want to put Trey to sleep unnecessarily. His ENT did say Trey’s ears are looking pretty darned good. There was a bit of gunk in the offending ear, that he took out, but more waxy than anything… so that’s great!!

One more quote for now:
“There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.”
-ALBERT EINSTEIN
Putting these quotes on Trey’s website reminds me of when Trey was diagnosed. Hearing a quote like this at a time like that would have made me want to punch someone in the head (probably the person who said it to me). So, these quotes are not for the shitty times, for shitty times happen, and with a kid with a progressive difference, those shitty moments happen more often for us than for others.
(Side note: I had a therapist point out to me that what Ryan and I have been living with for the past four years, wondering about Trey’s brain and the path his life would take, is fear and dread. What we’re beginning to live with now, is more typical to what other parents live with day to day, and that is worry. All parents worry. That’s part of a parents’ life. What most parents don’t live with and what nobody can take for an extended period of time without effects to their health, is the fear Ryan and I lived with for four years. And she is right. Worry happens. I worry about Sadie and Avery too. But worry is not all encompassing. It does not run your entire life or all your thoughts all day long like fear does.)
I definitely go through those shitty times and do not want people to push me out of that place. I need those times to grieve and be sad and angry, in order for me to come out of those times and be okay. These quotes are for those other times. Those day to day times, when your child has not just been diagnosed and has not just gone through or about to go through surgery and is not about to go through a battery of tests. Those times when you can live and choose how to live. When you can choose to be angry or just enjoy your life. Because shit does happen. But it doesn’t have to define you or your life.

Another story I love:
If you have ever gone through a toll booth, you know that your relationship to the person in the booth is not the most intimate you’ll ever have. It is one of life’s frequent non-encounters: you hand over some money; you might get change; you drive off. I have been through every one of the seventeen toll booths on the Oakland San Francisco Bay Bridge on thousands of occasions, and never had an exchange worth remembering with anybody.
Late one morning in 1984, headed for lunch in San Francisco, I drove toward one of the booths. I heard loud music. It sounded like a party, or a Michael Jackson concert. I looked around. No other cars with their windows open. No sound coming from any trucks. I looked at the toll booth. Inside it, the man was dancing.
“What are you doing?” I asked.
“I’m having a party,” he said.
“What about the rest of these people?” I looked over at the other booths; nothing moving there.
“They’re not invited.”
I had a dozen other questions for him, but somebody in a big hurry to get somewhere started punching his horn behind me and I drove off. But I made a note to myself: Find this guy again. There’s something in his eye that says there’s magic in his toll booth. Monthes later I did find him again, still with the loud music, still having a party.
Again I asked, “What are you doing?”
He said, “I remember you from the last time. I’m still dancing. I’m having the same party.”
I said, “Look. What about the rest of these people…”
He said, “Stop. What do those look like to you?” He pointed down the row of toll booths.
“They look like… toll booths.”
“Noooo imagination!”
I said, “Okay, I give up. What do they look like to you?”
He said, “Vertical coffins.”
“What are you talking about?”
“I can prove it. At 8:30 every morning, live people get in. Then they die for 8 hours. At 4:30, like Lazarus from the dead, they reemerge and go home. For eight hours, brain is on hold, dead on the job. Going through the motions.”
I was amazed. This guy had developed a philosophy, a mythology about his job. I could not help asking the next question: “Why is it different for you? You’re having a good time.”
He looked at me. “I knew you were going to ask that,” he said. “I’m going to be a dancer someday.” He pointed to the administration building. “My bosses are in there, and they’re paying for my training.”
Sixteen people dead on the job, and the seventeenth, in precisely the same situation figures out a way to live. That man was having a party where you and I would probably not last three days. The boredom! He and I did have lunch later, and he said, “I don’t understand why anybody would think my job is boring. I have a corner office, glass on all sides. I can see the Golden Gate, San Francisco, the Berkeley Hills; half the western world vacations here… and I just stroll in every day and practice dancing.”
An excerpt from ‘Chicken Soup for the Soul’
I first found this quote as a teen and was compelled enough to type and print it up, so that more than a decade later I would come upon it while unpacking from a move. Now, I find this quote just as compelling, especially given the turn our life has taken with Trey’s diagnosis. It’s all about perspective.

I’ve always loved quotes. Here’s one I just found:
“This is my simple religion.
There is no need for temples;
no need for complicated philosophy.
Our own brain, our own heart is our temple;
the philosophy is kindness.”
HIS HOLINESS THE 14TH DALAI LAMA

We had a party at the Medical Day Unit on Monday to celebrate the three year mark of Trey’s infusions. I can’t quite believe it. Three years. He doesn’t even seem old enough to have had 3 years of treatment, but then I look at him and yup, he’s going to be six in a month. It’s crazy to think. It was lots of fun. Family and friends came, there was cake and pie and balloons and presents. A great way to spend a Monday at the hospital!
Trey’s awesome ENT came to the party, so we chatted about Trey’s ears, which have been giving us heck for the past monthes. One continues draining, constantly, and smells… not great. Dr. Moxham said that sometimes, in permanent ear tubes, bacteria will stick to the tube and lead to this kind of problem. A new tube needs to be put in. Dr. Moxham said it’s up to us how quickly we want to deal with it (which means another surgery). Other than the smell and draining, it’s not a huge problem. The problem from our end is that with a draining ear and hearing aids, Trey can’t hear from that ear. As soon as the aid is put in, fluid starts filling the tube in the aid until it’s blocked and the aid is useless.
We have a trip booked to UNC for development tests, as part of the IT trial with Dr. Muenzer’s group, for March 16 & 17, so we’ve decided  we’d like to try to get Trey’s ear problem resolved before we go down there. I just really wanted to avoid another surgery until it was necessary, or until we could get something else booked during the same general anesthetic, but this is somewhat inevitable. We’ve held off for a while already. Bummer.
So then I called the ENT secretary to book an OR time before Trey’s UNC trip, but the wonderful Olympics have put a jag into everything here (we even have friends who have an emergency custody situation going on and they have to deal with it by Friday because the courts are closing for a month!). Dr. Moxham has one emergency surgery OR date on February 24 that is completely booked, and his next OR date is March 15, when Trey will be in NC. So, we’ve been put on the cancellation list for Feb. 24 and have an appointment to see him on Feb. 10.

Alice laughed. “There’s no use trying,” she said. “One can’t believe impossible things.”
“I dare say you haven’t had as much practice,” said the Queen. “When I was your age I did it for half an hour a day. Why sometimes I’ve believed as many as six impossible things before breakfast.”
-Lewis Carroll, Through the Looking-Glass