November 18, 2011 mcfadyena

December IT trip as planned

Above is a picture of Avery reading to Trey and holding his hand while I was flushing and de-accessing Trey after his infusion today. Avery is growing up to be a thoughtful, caring and kind little brother.
Trey’s IT dosing schedule has been left as originally planned. Our next trip to UNC is December 11-20. Trey missed his November dose so that his body and back can heal. Trey will get his next dose on December 13 via lumbar puncture. Although unfortunate that Trey missed a dose, it is what it is. Trey is in the trial, he got his first dose, our waiting is done. As I mentioned in my last post, getting used to life in a trial has been an adjustment. There have been a lot of major changes in our lives in the past three monthes. I don’t think I will ever again feel the intense anxiety and fear I did before Trey qualified for this trial. Then the excitement and busy’ness’ of the gala, followed by a three week family trip to UNC for port placement and first dose in a phase I experimental trial, then a trip home, and days later, emergency removal of an infected port. All on top of regular life stuff.
In the past two days I’ve finally had a chance to sit down and read to my kids and just hang out. It’s been soooo nice.
It’s also been really neat noticing changes in Trey. At first I was a little disappointed I didn’t notice more in Trey sooner. However, I have realized that although the changes aren’t striking, there have been small but significant changes. It also occurred to me that if Trey’s cognitive skills didn’t begin to decline as early or quickly as other boys with MPS II, maybe changes wouldn’t be as quick or noticeable either. Who knows… that’s the beauty of a trial! Here’s what I have noticed: Trey is better able to play with his siblings. I didn’t notice it until recently, but I haven’t had to intervene in squabbles nearly as often. Previously, Sadie and Avery could play for hours alone together, without disruption. As much as Trey wanted to be involved, he struggled. He didn’t have the patience or language to ask for something, wait to for a response, and if Avery or Sadie said no, to work it out without grabbing or hitting. If Trey was with his siblings, you knew because someone would end up frustrated or crying. However, this past week, I’ve noticed all three kids playing together for lengths of time with ease. I even noticed Trey and Avery off playing together, wanting to play alone, without Sadie. As bad as I felt for Sadie, this has NEVER happened before. Avery used to ask Trey to do or play something and Trey wasn’t able to hold focus for long enough to do the game Avery wanted to. Ave would inadvertently end up going to Sadie, who could participate.
Trey has also lost no skills through all that’s gone on. In the past, any breaks in speech or occupational therapy services would lead to small set backs. He would always regain the skills, but there was a step back. Not this time. In addition, all his providers have commented on an increase in focus, attention, and perseverance. And last but not least, I’ve noticed subtle changes in language, mostly in Trey’s attempts to pronounce more syllabyls in words (ie. ‘banana’ instead of ‘nana’).


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