Raul went to the marathon for the first time this year! We grew up living near the route, but now we live further so Raul had not been before. He wasn't too impressed, really just wanted to go to the playground, but he did get into it a bit at the end. He even waved to a few people. He and I watched the wheelchair racers finishing on TV while I did his bandages this morning, and he seemed to think that was cool. We also got to see in person two of the runner/wheelchair teams, one of which was the Hoyt team in their final race. We stayed until we saw my mom's friend go by, and then Raul got a reward trip to the playground for being good while at the marathon! He loves the playground!
Sunday, April 20, 2014
Raul had a busy day today! My dad and I went to a show this afternoon, so Raul and my mom went on some adventures. They went to a new accessible playground, and Raul particularly liked the big sandbox full of construction vehicles! They also stopped at the farm to see the cows, and then came home to play. When my dad and I got home we put out some Easter eggs for Raul to find/collect, but he wasn't too interested in that. He had us open two, and then we saved the rest for later. He was excited to open his presents! He got helicopter pajamas, and a Mickey fishing rod, as he has obsessively been talking about how we are going to go fishing this summer. He also really liked his Easter bulldozer, and kept saying that it was "very powerful". He was tired after his busy day, and is already asleep! Tomorrow we will be going to watch a bit of the Marathon!
Tuesday, April 15, 2014
This is a video of Raul swinging from last weekend. He loved the swing!
Sunday night we went to an informal party that my parents were having, but Raul insisted he wear one of his bow ties! He likes to dress up, and was upset when we tried to take it off at the end of the party!
Then yesterday Raul had his orthopedic appointment. The main thing we were looking to address was his ankle contractures. The doctor checked out his legs, and he is going to consult with some of his colleagues about his case. He thinks that his contractures are probably too tight for just serial casting to work, that it would likely take a minor surgical procedure. The reason to do this is so that he could bare weight on his legs, as he already has osteopenia and will likely get osteoporosis a lot sooner if he cannot put weight on his legs at least. We don't expect him to walk, this would just be for standing with assistance to strengthen his legs. He also ordered a DEXA scan, which is usually something done regularly for those with severe RDEB. The doctor is going to get back to me in a few weeks on what they think is the best option for him. It was disappointing that there isn't a straightforward solution, but I liked the doctor, and hopefully he will come up with a plan. The good news out of that appointment was that he now weighs 38.3 pounds! He had been at 36.5 for a long time, so some weight gain is great!
Saturday, April 12, 2014
Today we went up to Rockport just for the day. It was nice out, so we were able to go to the playground there. We hadn't been to it before, and it is great! It is very handicap accessible; we could get to the top of the structure and use most of the equipment! Raul loved the swing the most, and would have stayed on it all day! Then later he and my dad also walked down the street to see the horses.
Thursday, April 10, 2014
Saturday, April 5, 2014
This week Raul had a scratched eye, and had to miss three days of school. Originally he woke up and just didn't seem to be able to open either eye, but eventually once I got him to start fluttering them open I could tell it was actually his right eye that was scratched. He has had these before, but this time seemed the most painful. He would try to play, but then screech on and off and grab at his eye. He also tried to rub it a lot. The mornings were the worst, and they got a little better through the day. He wore sunglasses a lot, which seemed to help, and we kept the house dark. After the first day it swelled, which is what I am used to with these scratches (common with his type of EB). Finally today they were almost totally better, and we were able to venture out. We went to the farm first to see the baby animals, then quickly to the playground before it got too cold!