Saturday, March 29, 2014

Children's Museum

Today we went to the Children's Museum. It was a little crowded, but we had fun! We went through all the rooms, and Raul's favorites were the construction room and the train table in the room for young children. He had a good time checking everything out, and playing with all the interactive things. He also liked the water tables in the Peep and The Big Wide World room, and the hanging funnels, which he called "water cranes". You will also notice he picked up a construction costume along the way!

Sunday, March 23, 2014

Mer and Pat's Farm

Raul has been very much looking forward to going to "Mer-and-Pat's-farm" (he says it as one word)! We talked about all the animals they would have, but in the end he was most taken by their cat! We also saw cows, chickens, baby ducks, goats, a sheep, and pigs. First we went out to lunch, and he did awesome sitting quietly playing videos on the iPad while we ate. Then we went to see their apartment, and met their cat Marmalade. Raul was too funny with the cat. He was following it around ordering it to get down and play. The cat paid little attention to him, but Raul did not give up! He got to pet it a few times, and watch it play with its string. He also gave it some kisses at the end, which was adorable! We walked around the farm and saw all the other animals, and also a green tractor, which Raul was very excited about! He seemed to know how one would drive a tractor if it was on. He then explained to us, complete with hand motions, how he would dump his load into a dump truck. He was very sad when we had to leave, but hopefully we can take him back to visit in the Spring!

Tuesday, March 18, 2014

Another Full School Day

Today Raul started what will be his second long day at school! He will now stay the full day on Tuesdays and Thursdays, and stay half the day on Wednesdays and Fridays. This picture is from yesterday. He set up some of his trucks to watch the train go around the track.

Sunday, March 16, 2014


Yesterday we walked to the playground at the school by our house. It was warm, so there were lots of people there. Raul said "hi" to some of the other little kids, and liked watching them run around. He was all over the place scooting through the structure and going down the slides! There were some oys with an airplane kite that he thought was very cool. He got one small new wound when he tipped over on the structure, and his hands were a bit irritated from the rubber turf, but he loved it! He started asking to go back right when we left! He was also excited about the ice cream truck that came by (not for the ice cream, for the truck!). 

Saturday, March 15, 2014

EB Clinic

We had a surprisingly positive experience yesterday at a local EB Clinic! I was skeptical based on the recent interactions we have had with local doctors, but this was much better. We also got to briefly see another EB family when we were arriving! We saw a GI doctor, a nutritionist, and the derm. team. With the first two we discussed different ways to try to get more formula in during the day so that we can cut back at night, as Raul often spits up in the morning. We also talked about his reflux medicine; that it is best given on an empty stomach, and that it becomes less potent after 21 days. He will continue to see his regular GI doctor, but this team can consult if needed.

With derm. we spent a lot of time going over all his history, his most pressing issues, and how we do bandages. We talked about doing Apligraph on his wounds that haven't healed since birth, and hopefully we will be doing that in May. They are going to talk next week to some of the other EB specialists around the country to come up with an antibiotic regimen to use through the process. In the meantime we are going to continue his Bactrim until they make that decision, as we don't want to lose ground on the improvements/cleanliness the antibiotics have helped with. We also talked about his legs in general, and we may do an orthopedic consult about his painful knee and to address his ankle contractures.

At the end they also told me about some future trials their hospital will be involved with, so I am interested to hear more when those get closer! This hospital is further than our regular hospital, but it will be worth it if they will do more to help Raul! And hopefully when we are inpatient they will be able to consult by phone so we don't end up dealing with the same issues we had last time!

Tuesday, March 11, 2014


Today it was finally warm enough to go outside to play for a few minutes! Raul had a good time playing with his cars and watching real cars and trucks go by. He also found a fun stick to play with!



And these are the crazy faces he made when I asked him to smile...

Sunday, March 9, 2014

Cars and Ducks

Today we took Raul to feed the ducks! The ducks were actually swans, geese, and seagulls. Raul didn't want to throw the bread, but he thought it was funny watching them eat the bread my mom threw. It was a little scary at the end when all the ones from further onto the river came over, and the two giant swans! Raul liked it though, and said they were "nice ducks".

Raul made this car creation the other day. They are all stacked on each other, going two directions, with a tow truck in the middle. He told me to take a picture of it!