My Romanian Butterfly: December 2012

Well it looks like I haven't done a big update since mid-November! As you can see from the photos, lots has been going on! We celebrated Thanksgiving, my sister's birthday, Christmas, and took some fun trips/day trips!

In my last update we had just gotten out of the hospital after a few weeks of issues. Luckily Raul has been healthy since then, and doing well! He did lose a little weight with all that went on, but is still chubby. Raul's skin has been looking pretty good. His wounds always have drainage, but no major issues, and not many fevers. He has had some issues with sleep again, so is back on a medication for that, and seems to be doing better now. He had one accident where he fell out of his wheelchair going into our apartment building (it just has a velcro belt), and his face got pretty banged up, but healed amazingly well/quickly!

He continues to do well pushing his own manual chair, and they are working with the power chair at school. He also spent some time in the gait trainer in Rockport, and did really well! The wood floors definitely made it easier, so I have left it there for now for him to practice. I think he did better now than he was before when we worked on it a lot. Just goes to show again that he will do things when HE wants :)

School has been going well too. He missed a lot around the time of my last update, but has only missed a couple days since. He has become much more verbal lately, though most is still unintelligible to people not in our family or around him a lot. His teacher says that he likes school and is happy while there. They have sent home a couple cute crafts that he helped make like a turkey for Thanksgiving (where the body was a trace of his foot) and a wreath for Christmas made from his hand prints.

In Speech he has been working on colors, body parts, and on/under lately. He knows all his cars and trucks, and even the different noises associated with each. He has a book with four vehicles and four sound buttons and matches them properly every time! However, with all these advances, he has also shown a bit more frustration during times when he cannot communicate what he wants. I am going to ask his speech therapist if there is an iPad app she would recommend for communication, as he does really well with the iPad for other things.

I love the Christmas season, and I think Raul did too! This year he was able to be more involved in a lot of things, and he seemed to have a lot of fun. We got to go Christmas tree shopping twice (once for our house and once for my parents'), decorate the trees, make and decorate cookies, shop, drive by houses with tons of Christmas lights, and watch lots of Christmas movies! We also got to do some special things like going to Zoo Lights at the Stone Zoo where we saw a few animals, took our picture with a baby reindeer, saw the zoo fully decorated with lights, and met Santa! Raul loved Santa this year! He smiled and giggled a little when I put him on his lap, and blew kisses and waved when we left.

We spent Christmas Eve and Christmas at my parents' house with them and my sister. On Christmas Eve we went to church, and amazingly Raul was able to sit through the whole service again without being too distracting! I did let him play on the iPad, and he talked a bit, but no screaming this year (last year he was scared of the organ). Then we went home to make homemade pizzas and brownies. Raul had fun scooting all over, and loved opening a few presents! This year he could open them himself, and had fun ripping the paper!

We didn't want Raul to be overwhelmed, so he actually opened things the whole week leading up to Christmas too. He got gifts from the Secret Stocking Project by The Butterfly Fund (an amazing organization!), and we gave gifts to two families as well. It was fun watching him open those as they were all surprises to me too! He opened those one at a time so he really got to play with everything. On Christmas Eve he opened a Matchbox garage and probably would have been happy to stop then! He was still a bit overwhelmed with everything on Christmas day!

None of us slept well Christmas Eve as Raul and Teddy were both up crying a lot. We got up and did our stockings first as usual before breakfast. Raul got two truck movies, and was not happy that he couldn't watch them right away! He also got some pirate figurines as he is a bit obsessed with pirates right now as well. We had a yummy breakfast, then opened presents. We were all very lucky this year, but agreed that it was most fun to watch Raul open his presents and play with them! We were all pretty tired by mid-day when we finished, and I took Raul upstairs to nap. Then it was downstairs for more playtime with my dad while my mom and sister cooked Christmas dinner. Raul is such a good baby! He actually played by himself and let us eat our whole Christmas dinner and dessert! Then he got to watch some shows on Sprout while we played Bananagrams together. I was glad to see that watching so many kids shows hasn't atrophied my brain and I could still win :)

The day after Christmas my mom and I left on an adventure to PA with Raul! The drive was supposed to take around five hours, but took closer to ten. We hit every possible traffic jam, and then bad weather going into New Jersey. We got there late, and it was raining really hard, but we decided to still go to the light show we had tickets too. It was so crazy, but really cool! They had millions of lights, and lots of things that moved, which Raul liked! His favorite was a jack in the box, and of course anything with a car. He also thought it was hysterical that they had lights ups of Spongebob and Dora the Explorer! We were glad we stopped at the farm, as it gave us a good end to a long day. Raul only napped half an hour in the car, but was still up pretty late as he had to wind down and move around after being in the car so long.

The next morning we woke up excited for the main reason we went, Sesame Place! Unfortunately, it doesn't open until 1, so we had a while to hang out in the hotel. Raul and I watched a bunch of youtube videos of Sesame Place and their parade on youtube to get ready. And he also watched Sesame Street on the iPad. It was miserably cold, but we all had fun! First we had a special character lunch. Most of the characters were there, and not too many families, so the kids got to see the characters a lot. We got pictures with all of them, and Raul blew them all lots of kisses! Then we entered the park where we first rode a little train, visited the Sesame neighborhood where we saw more characters, and went to shows.

Raul was exhausted, and nodded off a bit during the first show, but would wake up and smile whenever the characters came over to him (and they did a lot!). The characters were all great with him and the other children with special needs we saw! Next we went to an Elmo's World show, which also got some smiles out of Raul. We were freezing, but wanted to make it until the first parade, so my mom and Raul rode the Merry go Round, and we spent a lot of time going in and out of the gift shops to get warm!

The parade was fun, and Raul definitely really enjoyed it. He smiled and laughed, and when it stopped on its route lots of the characters and dancers came to say hi to him. We were near the beginning, so only stayed until the first stop on the route as everyone had gone by. We could have followed it, but we were all cold and pretty tired. We had a low key night, then drove back the next day, luckily hitting only a couple spots of traffic! Tomorrow we will be going back to my parents' house for New Year's Eve!