Sunday, October 30, 2011

Happy Halloween

All is well from the Hartung world. We had a fantastic time with my best friend and her daughter who stayed with us almost 7 weeks from Australia, slight hiccup of their travel plans with hurricane Irene but other than that all went well. I even rode a bike around Manhattan and over the Brooklyn Bridge, and I hadn’t ridden a bike for 15 years! Guess that proves you really do never forget. Dylan is still on Accutane as we wait for the humanized antibodies to increase dose in upcoming studies. He is doing well apart from the usual colds that come at this time of year and his usual fatigue and some aches and pains. He is still having home instruction as he realized that his fatigue issues would make full time schooling impossible. Cain saw his cardiologist and his dilated aorta is the same, no worse or better. He has been given activity restrictions but luckily his passion is music and not sport. We saw the human genetics doctor who says he is on the border for a diagnosis of Marfans. This diagnoses is not an easy one, it involves a series of puzzle pieces over time to get a true definitive answer. She has ordered blood tests that if positive will give us a Marfans diagnosis, however if it is negative it will continue to leave him on the border until another symptom arises. We just have to wait and see, but either way, Marfans or not, he still has a heart issue that needs monitoring. Cain says its fine, it could be so much worse and he is so right. I guess having a little brother with cancer puts medical issues in a huge perspective. Tim and I continue to work and we are at the stage of renewing our visas once again. Mountains of paperwork ahead of me, over the next month in preparation for the application. The boys have their birthdays very soon, it’s hard to believe that not only will Dylan officially be a teenager but also that Cain will be 17, he is almost a man! Dylan has his usual long wishlist on Amazon, he is fortunately still relatively easy to buy for, Cain on the other hand is grown, so birthday wants from him is just clothes and musical equipment. It makes it really hard because he can’t find many clothes on Amazon to put on his list (hard to choose without trying on) and musical equipment is so expensive. I suggested gift cards, but again not an easy thing to add to an Amazon list. A few of you have asked me what to get Cain and my suggestion is gift cards for clothes, shoes, music or movies…that’s my best I could come up with. Dylan of course is into his yu-gi-oh cards, nerf guns, ps3 games and even though it’s not on his list, he does still love hot wheel cars, he probably doesn’t want to admit it now that he is a “teen”. We had our first snow for the season yesterday, however it’s actually still fall. It’s the first snowfall in October since 2002. It wasn’t very pleasant though, nice to watch from the window, but being out in it was pretty horrible. I wore my sneakers to work, thinking t would just be flurries, needless to say on my way home I had very wet feet. It was windy and cold, and mixed with rain, so the snow was like a slushy. Today the sun was out, and dried up most of what was left. We had the “Angel on a leash” therapy dog Halloween parade at the RMDH, Bear wore his skeleton costume and had a great time. Photos can be seen on “Bear’s” facebook page. Speaking of photos, Dylan’s photo link should now forward you to his facebook page where I have uploaded many photos that were once accessible in his album. After 3 online galleries shutdown, I have now resorted to just using the facebook gallery for now. Well next update will be around the boys birthdays unless some drama happens between now and then. With Love & Hope, Have a fun and safe Halloween, the Hartungs.