Trey did get his dose a week and a half ago. The boy is lucky. For the past three monthes, Trey got the bugs his sister, brother and dad passed to him. The fortunate part is, the only bug he caught before his dose was mild enough to hold off with supplements until his dose was complete. With the others, Trey came down with a fever or vomiting within 24 hours of his dose. This freaks me out about antibody development- antibodies with IV Elaprase (I have no idea about IT Elaprase, although the fact that we’re pumping something foreign into Trey’s brain doesn’t fail to cross my mind) can develop and cause serious allergic reactions and can significantly reduce the effectiveness of the drug- but there’s nothing I can do about it, so for my sanity, I let it go, at least during my time at home. In NC I am and allow myself to be a full on mother bear.
But that’s not what this blog is about. This blog is about my changing world as a mum to a little guy with MPS II, who is getting enzyme into his brain. Although I never ‘gave up’ on his learning before this IT trial began, Trey was losing his ability to learn. He may have been retaining what he had in terms of skills, but he was definitely losing patience, attention and concentration, so trying to help him learn anything was… frustrating. And even before this, like when he was three, four and five years old, before I knew his brain was affected, I couldn’t help him learn at all. Every mistake he made, every sound he missed would send me into a panic that Trey’s brain was affected and he would die by age 15, which led to intense fear, and not an ideal learning situation for Trey. So, from the time Trey was diagnosed at age two, until now, I have let others direct Trey’s learning (we homeschool, but we have home schooling support, so this means: aids, OT’s, speech path’s etc).
Now, however, things have changed. I am no longer terrified about the possibility of Trey’s brain being affected. I know it is. But I have recognized that IT Elaprase in Trey’s brain is allowing him to learn. I am, for the first ever, really excited about Trey’s learning. I’ve just noticed this in the past few weeks, but I have all sorts of tiger mom (Have you read Amy Chua’s ‘Battle Hymn of the Tiger Mother’? Or the resulting New York Times ‘Notes from a Dragon Mom’? http://nyti.ms/pl7Ch3) goals for Trey. I guess with Trey I’m part dragon mom, part tiger mom, and part mother bear. It’s SO cool. At least a couple times a week I want Trey to type a letter to someone, which he is all over like a dirty shirt- he gets distracted, yawns and stares into the trees, but I can tell him to look at the keyboard, focus and tell me what letter says ‘mmmmmm.’ He looks at the keyboard, focuses, types the letter ‘m’ and then he wants to do it all over again the next day! Trey typed a happy birthday card to a friend yesterday. He was beyond proud. Until I gave up on printing and discovered the computer!, Trey’s cards consisted of a few quickly drawn scribbles. Now he persists, works hard and can type a letter. He was beaming. I was so so happy for him.
Trey also recently acquired a community support worker to help him become more independent in the community. Trey has always wanted to be in the community, meeting and visiting with people, so even if Trey wasn’t in the trial, this community support worker would have been able to help Trey get out into the community more than my time alone would have allowed. Part of this job though, involves goals. My original goal? Trey enjoying himself and feeling good. Now? He’s working on becoming an independent dog walker and I am hoping that soon (Trey’s nervous right now), Trey’s community support worker can help Trey ride his bike to the library, mailbox, or baseball field.
Because I now know learning is possible, a whole new world has opened up. Every night at the dinner table we take turns acknowledging what we are grateful for that day (I bet you can guess many of my recent moments of gratefulness). Trey participates, but often with modifications. I’ll ask Trey what he liked the best about today because I’m not sure he knows what ‘grateful’ means, and often Trey will respond with an answer that doesn’t completely make sense (for example, he’ll respond with what he wants to do later that night or the next day or he’ll bring up a completely different topic or question). Last night I asked him what he was grateful for (not what he liked about) today. His response: ‘I am grateful that Kyle took me horseback riding today (small words, big words, correct tense and all).’ Amazing.
Oh to the highs and lows of life… the highs and lows.
