This is Julian with Ti Ti Chantal when we went to pick him up from his stay at George Mark House. He made it through 2 nights alone and was very proud of himself! He had some hard moments but overall it was a good experience for him and also for me. I had a hard time leaving him and yet I know it is a safe and fun environment for him so it was time to do it! Julian is pretty stable right now with just a few small seizures in the past week. Today is the second day he has gone with his body being kept pretty straight and no pain on his side or legs. We went for a swim this morning and he enjoyed that! We had to go before the temperature got to high, it is expected to be another 100 degree day. Christian got home from camp on Saturday. He had a great time and has been on the go since he got home! Soccer practice starts soon and he is looking forward to that. Soccer season reminds of when Julian played soccer. It is hard to see Julian so limited in what he can do and remember how much he loved to run, ride his bike and play at the play ground at school. He is still able to do many things and for that I am grateful but I so miss the Julian before ALD. I love him as he is as well I just hate what ALD does to our sweet boys. Praying for healing for all our boys with ALD and NBS so boys can be diagnosed and have a much better chance at recovery! Hopefully that will lead to a cure!
Posted on: Wed, 30 Jul 2014 23:57:07 +0000