Sunday, December 25, 2011

Christmas Day

Merry Christmas! We woke up early this morning to start celebrating (okay, we had to wake Raul up). We started by having my dad open his Keurig, as we were all tired and needed some caffeine! Then, as usual, we opened out stockings first. I helped Raul open his, but really he only wanted two of the things. First, his new "lovey", so that he has a backup, except now he just has two at one time! As soon as I opened it he put one up to either side of his face, and was just so happy! The other stocking present he loved was a little green car with a guy in it, he played with that for hours!

After stockings we had a yummy breakfast, and Raul continued to play with his car at the table. Then it was on to presents! We all got some great gifts this year. Raul's favorite present was a set of new matchbox cars that he now keeps in a plastic bag from another gift. He played with them all afternoon, and liked putting them in the bag then dumping them out. He was a little overwhelmed by the festivities I think, so after opening presents he took a quick nap while my dad and sister walked our dog. Unfortunately, it was not quite long enough for me to get a nap too!

Raul, my dad, and I watched a movie while my mom and sister cooked for Christmas dinner. Teddy was busy running all over the place between Raul, the presents, and the food! Raul and I were both exhausted by late afternoon (we aren't used to waking up early!), so I put him back to bed before we ate dinner. He watched TV and talked to himself for a while, then fell asleep. We played games while waiting for dinner to cook, and then a few more rounds after dinner. Dinner was yummy, and now we are getting ready to head to bed early. Unfortunately, I had to wake Raul up to change his diaper and hook him back up to his feeding pump, so he is awake again, but hopefully will go back to sleep soon!

Christmas Eve

On Christmas Eve we took Raul to the church we grew up going to. We were nervous about how he would do when he started crying as soon as the organ started playing before church, but he calmed down, and was nearly perfect during church! When we got home we made homemade pizzas and fried artichoke hearts, which were very yummy. Raul enjoyed cruising around in his car (walker). After dinner we each opened one present (a couple for Raul), then played a game together. We read The Night Before Christmas, then Raul watched part of a Christmas Sesame Street movie before getting ready for bed. Luckily he fell asleep early, as today is a big day!

Thursday, December 22, 2011

Christmas Cookies

That's right, Raul is EATING a Christmas cookie! He ate the head/arms/legs of this mini gingerbread man cookie, and THEN ate two cheerios! He also ate a bunch of frosting, but that's not solid (the cookie was the first solid food he's ever eaten!).

Baby Raul

When sending them updated pictures, I asked Raul's hospital in Romania if they had any baby pictures of him, and they sent me back these! I am pretty sure he was the cutest baby ever! And his skin looks really good in the picture where you can see it, too! From the dates, it looks like he was about 3 months old in most of these pictures. The last one was taken soon before I met him.

Sunday, December 18, 2011

Christmas Shopping

Raul has had a busy weekend of shopping and getting ready for Christmas. First, at the end of last week he had his first haircut by a hairdresser! He screamed the whole time, but it's done, and his hair looks less crazy now. But with the way his hair grows, it will probably be back soon. He is loving all his outings (other than the hairdresser). We have gone to the mall, to stores, and even out to dinner. He does really well in stores, and likes getting to hold toys while we shop, even if we put them back at the end (though he really liked when we bought him the little cars he was holding the other day). Tonight we also took him, in his new snowsuit, to look at some Christmas lights. He liked some of them, but agreed with me that one of the santas was quite creepy!

Our only failed outing was the first time we tried to go out for dinner. His GJ tube pulled out on his carseat when I was getting him out of the car, and I didn't notice until I felt the wetness on his shirt when we got to the table. So we turned right around and went home, where I put in a new G button. Since it was a Friday night, there was no point in going to the ER, as he was tolerating the G feeds okay, and Interventional Radiology wouldn't be back until Monday anyway. The best news though, is that it seems that he may be able to get away with just the G for now, and not need the GJ, as he has been tolerating his G feeds! We have a Mini One button in, which is great, and much lower profile than the GJ Mic-Key too!

Friday, December 16, 2011

Then and Now

Christmas Eve 2010, age 14 months

December 9th 2011, age 26 months

Well, he's still not a big fan of Santa, but he is looking much bigger and older!

Wednesday, December 14, 2011


And not just back at the RMH this time! We arrived home to Boston last night, and are settling in. Our flight was a couple hours delayed, once we were already at the airport, so yesterday was a long day. Raul also cried the whole flight. He was SO tired, but he just couldn't fall asleep. The traveling seemed to have an impact on his skin, as he was pretty sore and blistered last night. I tried to get him to keep a pediatric mask on during traveling so he wouldn't pick up any viruses, but that only lasted until we got to the gate, then he ripped it off. He will have his first appointments here on the 29th, and until then we will hopefully just be resting and enjoying Christmas!

Friday, December 9, 2011

Second Santa Visit

Tonight dinner and activities were put on by Kraft Foods. We had a yummy dinner, then there was a Santa, ornament making, cookie decorating, and presents! The hand print craft above is actually from last night. Raul cooperated really well, and even finger painted the snow dots himself! Tonight he was more cranky, and wasn't too interested in decorating a cookie with me. He did, however, want my juice, and screamed like he was being killed every time I took the cup away from his mouth! He again sat pretty happily with Santa for pictures. We got an Elmo DVD and coloring book (since he loves Elmo these days!), and at the end I also grabbed a set of sidewalk chalk/sidewalk crayons/colored bubbles for the spring! His favorite present though was a Christmas plastic cup haha, he is playing with that right now!

Four Days

Only four more days until we go home to Boston! MGH will be donating care for Raul now. While I know Raul will miss being at the RMH with all the kids, we are very excited to get home, and to be home for Christmas! I have started packing up our room here, and we have a ton of boxes we will have to ship. We have acquired a lot here; mostly medical supplies and toys!

We got to pick out Christmas presents for Raul here at the house, and he was very excited about it! Each family was allowed to pick out five presents and a stocking stuffer for their children, it was great. They even wrapped the presents, so Raul will have to wait until Christmas to play with them! Last night we did some Christmas crafts after dinner, and we made a really cute hand cut out ornament with Raul's little hands. He cooperated surprisingly well, and even finger painted the snow onto it!

Since my last update, when Raul was discharged, things have been pretty much the same medically. He had a period without fevers, but then started getting higher fevers again, and now is back on antibiotics for some bad skin infections. We did blood work last week, and surprisingly he still does not need another blood transfusion, but we are starting him on an iron supplement.

In even more exciting news, he now weighs 21 pounds, and has grown to 2'8"!! He is getting huge! Okay, well maybe not huge, but compared to when he got here he has gotten so much bigger. The last couple days he has been retching again, and spitting up some, but I think it is just because he feels sick again. I have been feeding him through his g-port (instead of J) for over a week now, and he is doing great with that, and seems happy to have some food in his belly!

Santa is coming for the second time tonight, so hopefully we can get more pictures!

Sunday, December 4, 2011

First Santa Visit

Today was Raul's first Santa visit of the season! He got scared and started crying when Santa came in the dining room (I think it was all the noise) but then was the only toddler NOT to cry on Santa's lap! He absolutely LOVES the monkey he got, and right now is lying on the floor kissing and hugging it. It has velcro hands and feet, and if you squeeze it in one spot it makes monkey noises.