Friday, October 31, 2014


 On Halloween this year our apartment building had a Halloween party for the kids, so we went to that before going trick or treating. Raul had a great time, and especially liked the pumpkin bowling game! Then we went trick or treating, which Raul really enjoyed this year! He particularly liked houses with dogs, and even tried to invite himself into a few homes!

Monday, October 20, 2014

Final Cincinnati Update

Last Thursday we moved into a short stay room at the Ronald McDonald House. We were able to spend four nights there, which was great! The house here is huge, with lots of meals and activities. We spent the day there Thursday playing, and in the evening went to a magic show they had.

Friday morning we were up at 5:30 to head over to the hospital for Raul's procedures! We spent some time waiting and talking to all the doctors, and then it was time to bring him back. At first they told us that I would not be able to be there for him to fall asleep as they didn't have the right surgical suite available, but luckily they were able to find one! They told us it could be up to 6 hours, but thankfully it ended up only being a bit over 3. Before going back, he got to choose his cast color too, and chose red!

He had scopes by pulm/ENT, a dental cleaning, and got cadaver skin grafts (after which both legs had to be casted above the knee). They went in that order, and after each doctor was done they came out to talk to us. His scopes looked great, and his dental cleaning was smooth with no cavities or anything (there was a fair amount of damage to his lips/mouth, but he wasn't too bothered by it). Plastic surgery was able to place the grafts on both ankles and one knee. She confirmed that his knee wound was in fact down to tendon and bone as I had suspected. His knee had a ton of inflammation, and was "boggy", so they actually checked for fluid in the joint as well, but luckily that was not an issue. This will be the first wound we do a surgical graft for if we can improve his labs. They then casted his legs, and were able to stretch his ankles a bit as well to help with the contractures. They also let us know that we would not be required to spend the night since things were quicker than expected and he did so well with the anesthesia, which was great news!

It took Raul a while to wake up, but when he did he wanted to sit right up, and he was happy to get to go back to the Ronald McDonald House. We were worried about how he would react to the casts, but he didn't care at all. In fact, they actually seem to be helping with some of the pain he had as they give his knees stability. He is also able to scoot just fine with them on, which is a relief! We will be doing follow up for his legs in Boston, and he will get bi-valved casts this coming Friday so that we can go back to regular bandage changes.

We are heading home tomorrow, but in the past few days we have been able to go to a train museum, as well as back to the zoo and aquarium. Raul has had a great time in Cincinnati, despite the medical appointments, and has actually been telling us that he wants to move here and live in the downtown area! He is now excited to go home, but also excited that we might have to come back in the future!

                                       Baking a chocolate cake

                            Pretending to be a dog with the therapy dog

Sunday, October 19, 2014

Raul's Fifth Birthday!

My posts are going to go a bit out of order, but I wanted to post about his birthday today! Today Raul turned 5! This morning he woke up to our decorated Ronald McDonald room, which I had done after he fell asleep last night. Then he got to get a birthday "call" from the Paw Patrol characters, which he was excited about. When my parents came over he got to open all his presents! After breakfast, his Icing Smiles cake was delivered, which he was very excited about! Then we went to the zoo, where he got to feed the giraffe again and see all his favorite animals. We also went into another building this time that had really funny jumping/playful monkeys, as well as a cute baby monkey. After the zoo we came back to have our cake (which we were able to share with many other families here) and actually met another EB family on our way in. Then we did lots of playing until dinner, and now he is sleeping soundly after his busy birthday! Tomorrow we leave the Ronald McDonald House, and Tuesday we get to fly home! He will have the follow up for his grafts in Boston. 


Thursday, October 16, 2014

Cincinnati 10/14-10/15

Monday we had our consultations for plastic surgery and dental. He is scheduled for a type of temporary grafting and a dental cleaning on Friday morning. On Tuesday he was admitted in the morning in preparation for his whirlpool treatment in the afternoon. This is basically a bath done under anesthesia so they can get off any crust around wounds and get the wounds nice and clean. We did this to hopefully help with the grafts taking on Friday. He ended up having to stay overnight Tuesday night, as they wanted to give him a blood transfusion. He was pretty anemic last Friday when he got his iron infusion at home, so they thought anesthesia would be hesitant to put him under Friday for his procedures without a blood transfusion first. He was discharged Wednesday mid-morning, and then we went to the Science and Children's Museum! Raul had a good time looking at the dinosaur bones and playing in the children's area. Then we headed back to the hotel to play, and finally got a good night of sleep! We found out last night that Raul won't be able to have the type of grafts using his own skin as his albumin level is too low, and the areas would not heal. So that was disappointing, but we are still going to move forward with one of the other types of grafts, and hopefully be able to improve his labs and do surgical grafts in the future!



Monday, October 13, 2014

Newport Aquarium

Raul had two appointments today, which I will combine with tomorrow's post, but today I have pictures to post from our afternoon trip to the aquarium! Raul had a great time here too, and his favorites were the penguins, the big shark tank, and having me tip the stroller back so he could look up in the tunnels through the tanks. Right when we started walking through, there was a huge map on the wall, and Raul pointed to South America and said "that's South America"! We don't know how he knows that, but he repeated it several times! We walked through twice, and spent a lot of time at the big shark tank and penguin exhibit. At the shark tank, he talked a lot about the school of fish and related them to his teachers and classmates, which was cute. We were there right at the end of the day, and there was almost no one there, which was great for getting to see everything easily!

We let him get down to look through the floor into the tank with the alligators

Raul touched the turtle a few times!

Watching the penguins jump into the water and swim. He said they were penguin airplanes because of how they looked swimming.