We've been home for one week and in Jared's words, "it's been awesome!" The first weekend home felt so normal! Jared and Gabrielle slept over with cousins and it was just so great to see Jared as happy as he was. The first part of the week Jared and I met with his teacher and also his class. I talked to all the kids about Jared's summer and the things that have gone on. We brought pictures of Jared after surgery, etc. and it went really well. The kids in his class have been very helpful to Jared and I think in some cases too helpful. Jared is a shy kid to begin with and with all of this attention . . . I know he doesn't love it. We are really proud of him though - I know he doesn't feel well and yet he wants to be at school. He pushes himself . . . he had sort of a bad day yesterday with lots of headaches; when I checked on him mid-morning he said, "I want to make it to lunch." And after lunch Jared had me check on him again and he said, "I want to make it to 3rd recess." So he is being tough and we are proud of him. We just have to take everyday as it comes. We love his teacher and the office at his school - they have been so great with everything.
We meet with his new doctor that will be overseeing his care here at home on Monday. His Rapamycin dose was increased just before we left Boston so it will be good to get his blood work done, etc. All in all he seems the same - some days are better than others. Jared makes the most of his moments when he feels comfortable and is not having a headache!
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There's no place like home, right?! I'm glad it's been an "awesome" week! What a tough and persevering little nephew I have. I'm so proud of him for sticking it out even though it's tough. Thanks for your great example, Jared! We love you so much and continue to pray for you every day. Ana keeps asking me when she's going to get to go and see you and play with you guys again. I hope it's soon.
ReplyDeleteThanks for the update! We love you all very much!
~Ang and fam
Jamie, I wanted to let you know what a GREAT idea it was for you to visit Jared's class. Jaron came home from school and the first thing he wanted to tell me about was that Jared had come to school and he told me all about what you had told them. He said he was going to try to play "quiet games" with Jared at recess sometimes so he won't be alone. (since he can't play rough games like soccer and stuff with that needle in him you know) He also said you explained that Jared sometimes doesn't hear very well because of the tumor and so if he doesn't respond it's not because he's being rude it's just because he didn't hear you. These types of things were VERY helpful for the kids to understand why he is acting the way he is and to give them some specific things THEY can do to help him feel happy and comfortable at school. (just hopefully not TOO helpful) You guys are AWSOME and we are so glad to have you all back! Love, Nicki Ellis
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