Wednesday, August 28, 2013

Last Weeks of Vacation

Last week was a busy week for us, with doctors appointments every day but one! The highlights are that Raul had another swallow study done, and he didn't aspirate at all,  and only had trouble with drinkable liquids. This means he is now cleared to eat purees. He is still getting all his nutrition through his feeding tube, but has now been snacking on baby foods as well! Anything with texture or chunks makes him throw up, but he loves his "yum yums"!

At his pulmonary appointment the doctor said that she does not think he has true interstitial lung disease, but that he has damaged lungs from aspiration, as well as thickened airways (likely from inflammation). We are not going to pursue any further testing at this point, but will be followed every few months. She also prescribed an inhaler for when he is coughing or having trouble with his secretions. So good news at both those appointments!

This week we are spending the week in Rockport. I had a fairly minor surgery yesterday, but I am recovering up here where my parents can help with Raul. I am not able to lift him for a few days, so definitely needed some help! He has been very cute and talkative, lately. He will start back at school next week, in his second year of pre-school. I can't believe he will be four in less than two months!

Sunday, August 18, 2013


Raul and I spent the weekend in Rockport with my dad and Teddy. Raul was excited, and loved riding in the car with Teddy! Raul got to see two different farms close to the house, play crazy with my dad and Teddy, and throw rocks into the ocean. Raul managed to hurt his little finger at some point, and to fix the skin required some intervention, but he actually didn't seem to mind, I think it felt better after (it just made me a little nervous!). We had a really hard night, unfortunately, and Raul barely slept. He seemed very itchy and in pain. It may have been due to some of his wounds, as when I changed his dressings it looked like he may have some infections again. He still had a good day today though, and only napped a little in the car. Hopefully it will be an early night!

Wednesday, August 7, 2013

A Visit to The "Doctor House"

Yesterday I had to take Raul to the ER at Children's due to intermittent retractions when breathing that had started over the weekend. Luckily his chest x-ray looked good, so they felt fine sending us home and waiting to do more testing when we see the pulm. at the end of August. Raul has an interstitial lung disease, but the markings were only considered mild on his x-ray yesterday, which is great! Raul totally freaked out about the x-rays, but other than that was pretty happy. We will find out more about his lungs after the further testing. We spent a bunch of extra time at Children's in the lobby as Raul loved the fish and ball thing. It was a long day, and luckily Raul slept fairly well last night!

Sunday, August 4, 2013

Home, and EB News

Today we headed home from NH. We drove through my high school, but didn't get out as it had just started raining really hard, and Raul was sleeping. Raul's breathing seemed to be affected by the altitude due to his suspected interstitial lung disease, so he was extra tired, and slept the whole way home. We were going to take him to see the bears at Clark's Trading Post, but it was raining too hard and we decided not to wake him up. So we headed on our way home, and Raul got a nice long nap! He was acting much more like himself once we were home, which was reassuring. The rest of the afternoon we just spent relaxing and playing, and I am hoping we will sleep well tonight!

Today there was big news for the EB community! With this news it seems that we are one step closer to a cure! I am excited to see how this works for little Charlie!

Saturday, August 3, 2013

Santa's Village #2

Today was our second day in New Hampshire. We only got a couple hours of sleep last night, as Raul decided he just wasn't going to sleep, and was up all night! We had a yummy breakfast, then went to the hotel farm tour. We got to see their donkeys, goats, sheep, bunnies, llamas, and alpacas. Raul got to go into the goat pen to pet them, even! Then we came back up to room and Raul and I took a nap while my mom took a walk. Raul was so tired, we decided it was best to nap before going back to Santa's Village.

Santa's Village was more crowded today, but still not too bad. There were lines, but we were able to use a handicap pass on most rides. We spent another few hours there, but only repeated one ride! Raul decided today that he loves rides! Every one that we went up to he got all excited to go on, and had a hard time waiting. When it finished, he told me that the flying sleigh ride was "the best ride ever"! Although the only ride that he requested to go on twice in a row was the small swing ride that was for young children only. We were nervous about not going with him, but he had a blast, and smiled the whole time! He was a little confused about why no one was sitting with him, but he was tough and went along (twice!). 

We visited the reindeer again and learned that they have 28 of them. The babies and elderly reindeer are up in another barn, but the rest are there in the park. Today they had carrots to feed them, and Raul liked helping to feed them. 

It had been threatening rain all day, but had not rained yet as we were nearing the end of our day at the park. I had been considering taking Raul on the roller coaster, and we got in line, but then I decided that it looked hard to hold Raul on. Unfortunately, he had already decided we were going, and cried when we tried to bail, so we went back. As soon as the train took off a torrential downpour began! The ride went through the course twice, and by the end we were totally soaked through and it was getting a bit slippery on the bench. Raul smiled some during the ride, but when we got to the end he started bawling. We think it was mostly about the rain, but aren't totally sure! My mom took him on the carousel one last time so we would end on a good note, and he smiled and laughed the whole time! 

When we got back to the hotel we decided to swim since we were already soaked. We went to the indoor pool so we wouldn't have to carry the stroller up and down the stairs again (there is one small elevator, but it is a bit scary and slow, and is more like a home elevator). Raul had a good time splashing, throwing a beach ball, and playing with one of his plastic cars. After bandages we went to dinner, and Raul did great again tonight playing with the iPad! I put him to bed early, and he fell asleep pretty fast, so we are hoping he will stay asleep!

Friday, August 2, 2013

Santa's Village!

Today we drove up to Northern New Hampshire to take Raul to Santa's Village! He was very funny in the car, and kept us entertained the whole way. He napped for about the last 20 minutes. I haven't been up here since I graduated high school, and it is really beautiful at this time of year. We are only about 15 minutes from where I went to school. Seeing the mountains is nice, and much different than the scenery at home!

We got to Santa's Village late afternoon, and spent about two hours there. We went on a bunch of rides, visited the reindeer, saw Santa, and took lots of pictures! Raul loved seeing Santa and the reindeer, and seemed to like most of the rides too. We went on one near the beginning that was much faster than we thought, and was sort of like a roller coaster but just on a circular track. My mom and I both felt very sick by the time it ended, but Raul actually seemed to like it! Santa's Village is a really cute amusement park.

Then we came back to check into the hotel, and had an early dinner. Raul did an amazing job at dinner and stayed in the restaurant for an hour! After dinner we walked around outside to check out the pool and look at the beautiful mountain view. There was a campfire with smores, which Raul enjoyed looking at. The hotel has lots of activities, but most are for older children and adults. They have a farm on the property and in the morning there is a tour with the farmer, but it is earlier than we usually get up, so we will probably go check it out ourselves later!

Raul decided we didn't pack him enough cars, so started packing his own backpack