For Shandra

Here are the videos of Raul laughing that I told you I would get :)

A Visit To The Zoo

This morning we took at trip to the zoo! We had brunch at the Ronald McDonald House, then hooked Raul to his feed and got ready to go! Raul's pump is pretty finicky, and it wouldn't work in the carrying case, so we just hung it on the stroller. It was funny, because I didn't hear the pump when it beeped that it was finished in one of the monkey houses, but another family with a little boy with a g-tube pointed it out as they had thought it was their pump. Luckily it is only about a ten minute drive to the zoo, as I was worried about Raul having stomach trouble in the car. I didn't realize how hot and sunny it was, so Raul and I were a bit over dressed, and we hadn't brought his hat or sunscreen for us (but luckily his stroller had a cover). We did half of the loop, but then headed back because it was too hot, and we were getting tired. Raul mostly liked watching all the people, it was really crowded, but also liked the bears and a rhino. We are wondering if he is nearsighted as he didn't seem to notice a lot of the animals we tried to show him, but he liked the ones he saw! The inside rhino was definitely his favorite, as it was close, and was moving around. There was also a baby orangutan that reminded me of Raul, because it had sticking up hair and a pot belly with skinny legs. We stopped at the pharmacy on the way back to get some supplies, and now Raul is napping on his play blanket, and hopefully we will be able to follow suit!

We Made It

We made it through our first night! Raul slept about 14 hours, and I got a pretty good night of sleep as well, though I started waking up early like we did in the hospital. The hardest part so far has actually been all his medicines. I have made a chart to keep track of them, but there are just so many! He fell asleep at 7 last night, so when I did his meds. and all that at 9, he got kind of mad. Since he is low to the ground in the pack n' play I had to take him out to put the cream around his g-tube, but he got over it quickly and went back to sleep luckily! I ran his feed over the whole time I expected him to sleep so we wouldn't have to get up all night to tinker with it, and that seemed to work well, other than putting us slightly behind for the day. When Raul woke up and started rolling over, I saw that he was in a puddle of poop, yuck, though he was more annoyed by the fact that I had to change his clothes. No throwing up yet, though he has been gagging some this morning. Hopefully doing it more slowly overnight helped with that feed. He is also super itchy, but we give him a slightly higher dose of atarax at home, so that should help. Not sure yet what we are going to do today. We are going to brunch at the RMH soon, then we may take Raul on a little adventure later!

Too Cute Not To Share

I was looking back through my old pictures of Raul today, and wanted to post some more from when I first knew him (4-6 months old). Cute as always, and so tiny! At birth Raul weighed 5 pounds, and was 19 inches long; he is now 18.7 pounds and 31 inches! He still looks small, but has made huge strides over the last two years! I am glad to have gotten to spend time with Raul starting at such a young age, as it has helped me to understand him and his condition better.











If you haven't already, scroll down to see my post on our discharge today!

Discharged

Well we are doing better than we did last Saturday; we have made it back to the Ronald McDonald House! Raul spiked a temperature this morning, which was getting higher right before we left, but they gave him tylenol, so hopefully that will bring it back down! Raul was definitely nervous as we walked to the car, but that's not surprising given that he hasn't gone farther than the front of the hospital in two months! He cautiously observed others cars as we drove, and other kids as we were in the lobby of the RMH. He is now lying on a blanket on the floor playing with some of his toys he hasn't seen in a while, and trying to watch the TV up on the desk. He definitely misses the flat screen over his bed like in the hospital! We have traded in the mini princess pack n' play they gave us before for a bigger green one, as there was no way Raul was going to fit comfortably in the old one any more! Luckily they had a bigger one for us to use! We arrived to lots of packages waiting for us as well, which were fun to open. Now Raul looks like he is getting ready for a nap, so hopefully we can both have naptime soon!

And to all the hospital staff: thanks so much for caring for BOTH of us over the past two months. We appreciate all that you have done for us. You made being in the hospital for so long much more bearable! Please pass the blog along to others at the hospital who would be interested in keeping up with Raul :)

56 days...

The number of days we have spent in the hospital since we got to CO. Some days it feels like we have been here forever, but other times it's hard to believe how long it's really been. But I guess when your baby knows how to work the equipment, you know it's been too long! Despite the fact that we arrived with him having a low grade fever and diarrhea, and he will be leaving with similar symptoms, a LOT has happened in between. The biggest being his g-tube, which has made giving meds. and keeping up nutrition a lot easier. We have certainly had issues with it, but overall it was a good decision. Due to his EB, and his immune system is general, Raul has been getting sick again with infections every time his antibiotics are stopped. It seems like it will be a battle to keep him "healthy" and out of the hospital, but hopefully this round he will be out longer than a couple hours! Developmentally he has made great strides during this hospitalization, which is wonderful. He is such a smart boy! He will be followed closely outpatient, and will also receive outpatient OT/PT/Speech therapies.

56 days ago:

Today:

Water Play

Sorry for not updating for a few days, things have been busy. I was discharged back on Wednesday after some IV hydration, rest, and testing. Those days were very hard for me, as I was not allowed to help with Raul's care, and could only be with him during the day (I had a room next door). It was especially hard the first night on the 8th floor as I had expected to be allowed to share a room with him like we had on the 9th floor, but we were not allowed to. That night he also had surgery at midnight to place a femoral line for access, and I was worried about not going down with him for that, but of course he did great! He had that line pulled after a few days, and has been on oral antibiotics since. After a few days of fevers, he has finally been fever free for two days. Now the only problem is that he is not tolerating his g-tube feeds. Ever since the high fever last Saturday, he has been throwing up a lot with feeds (sometimes just a bit, and sometimes the whole thing). We have slowed the feeds down, and put him back on continuous feeds overnight, but he is still having trouble. He also has some granulomas around his g-tube site, which look very sore. Luckily he is a trooper, and despite being cranky, has still been having fun playing. Tonight we did some water play, first in the sink and then in a bucket, and he had a lot of fun!