Friday, September 14, 2012

Long Update

Sorry it has been so long since I updated. I realized that I never even finished talking about the conference! If you would like to learn about what we learned at the conference, a fellow EB mom wrote an in depth blog (8 parts) covering all the sessions. You can see it here: Silvia's Blog. As important as learning all this information, was meeting all the other EB families! It was so nice to get to meet the others, both families with EB children, as well as adults with EB. Raul got to play with other toddlers with EB, and my mom and I got to know their parents.

It was so nice to be somewhere and not have everyone asking what was "wrong" with Raul. The hotel was filled with people with EB everywhere you looked! At night most of the families would go out to the pool for the nighttime pool party and big screen movie they had, and most of the kids were able to go swimming. Raul went in the pool twice, and while he didn't love it, he seemed fairly relaxed in the water. Unlike many of the kids, developmentally Raul is not at an age where he could understand that he has EB, and so did the other kids, but for us it was nice! I wish we lived closer to more families so that we could get together more often!

Soon after getting home we got our first foster care placement, a four year old girl with severe special needs. This little girl was very sweet, but was also quite sick due to a virus complicating her underlying conditions when she was here. She returned home after eleven days. We are now waiting for our next placement!

While in Florida we had started oral antibiotics for Raul because the drainage from his wounds was so bad. He was on Bactrim for two weeks, and yet the drainage and low fevers never totally went away. A little while after stopping the Bactrim his skin was much worse, and he was having slightly higher fevers, so his doctor had me take him to the ER towards the end of August. He had also gotten quite sick from the virus my foster child had. We were in the hospital two nights, and Raul came home with a week of a stronger antibiotic: Lenazolid. In the hospital they did a second skin biopsy to determine his subtype of EB, as the first sample had a problem. Luckily the antibiotics seemed to help his respiratory symptoms as well, which was reassuring! A week after finishing those antibiotics Raul's skin was starting to get bad again, and that is where we still are now.

Since being in the hospital we have had some fun adventures! Every weekend we have found a pony ride for Raul, as he LOVES pony rides right now! We went to Lookout Farm where we got to ride a train through their orchards to the children's area where there were lots of farm animals, pony and camel rides, play structures, and a children's musical performance with puppets! Last weekend we checked out the farm where we are going to have Raul's birthday party next month. Raul wasn't as interested in the pony ride that day, but loved checking out all the other animals, especially the donkeys! He also liked watching some older girls riding in the ring. We went in the petting area, and Raul got to pet a few goats, and see some adorable baby goats. We are excited to have his party there soon! We also took an adventure to Rockport, MA, where Raul was able to see the ocean for the first time! I also sat him down in the sand for a few minutes. We saw lots of boats, but Raul was more interested in the cars and dogs, as usual! Cars and dogs are his two favorite things at this point!

Two weekend ago we also had our photo shoot with the Tiny Sparrow Foundation. They are an amazing organization that does family photo shoots for families that have children with terminal illnesses. Raul was unusually unhappy that day, but the photographer was still able to get some adorable shots, and we are very happy with them! A few posts down you can find the link to the video they made on their website with our pictures!

Raul has been making huge advances with his speech! He is imitating everything now, and saying a few words and a few more signs on his own. He does not say the words with proper enunciation, but most people can understand what he is trying to say! He had his first assessment last week for preschool! He did GREAT! He wasn't shy at all, and loved playing with their toys. He even scooted and "talked" for them! They were all impressed with what he has learned, and with his skills. The class also had circle time, which was adorable, but Raul got a little upset because everyone clapped for him, which he doesn't like. He has two more assessments, and then we will have his IEP meeting where we will decide which classroom and school he will be in. This week I will be visiting one classroom at each of the two schools he may attend.

Raul's favorite TV show is The Pajanimals (on Sprout), and his favorite character is Squacky. Raul finds Squacky just hilarious, and is always laughing at him on the show. I wrote to the pupeteer that does Squacky to tell him how much Raul loves his show, and how much we appreciate it bringing a smile to his face, and we actually got an email back! Victor Yerrid wrote me a very nice email back, which I so appreciated, and included a message from Squacky to Raul!

For Raul's upcoming third birthday, we are having friends and family (and strangers!) send Raul birthday cards! Raul loves cards, and even still looks at his cards from Valentine's Day! We are going to get all the cards together, and give them to Raul on his birthday. We already have 6 cards, and I have talked to over 60 families that plan on sending cards as well! Raul is going to love it!

Lastly, we have one more fundraiser going on right now. Raul's subtype biopsy results have come back, and are not totally conclusive as to his type of EB (and there is a possibility he could have TWO types in one). Because of this, we now need to do DNA testing. The lab has cut the cost in half, but the testing is still quite expensive. Please read, and share his fundraising page, and donate if you can! If all our readers donated even $5 or $10 dollars, we would surpass our goal! Raul needs this testing to be considered for any trials, as he needs a conclusive diagnosis. Here is the link to his page:

Thanks for reading and keeping up with Raul's story! I will try to update more often!


  1. Caroline, I would just love to send Raul a proper third birthday card! If you'd be willing, could you message me your mailing address? You can reach me at sabrinasteyling [at] yahoo [dot] com.

  2. I, too, would like to send Raul a card. Is there an address I can send it to? Thank you!

  3. If you list an email address as Serena did above, I will send you the address :)

  4. I'd love to send a card as well.

    Thank you!

  6. Caroline,

    I have followed your blog for a few months now, but am terrible at posting comments (I really apologize!). I am so moved by yours and Raul's storya and pray for you often. I am a new Avon Representative and would love to hold a two week fundraiser for Raul. Due to my own overwhelming medical expenses (not working right now due to my health), I cannot offer more than 10% of my proceeds to you. I am really sorry for this and wish with all my heart I could offer 100%. Maybe once things get better and i'm able to start working again I can do another with the full amount. In the meantime, if you are interested please email me and I will get to work on the fundraiser asap. You are welcome to email me at: pastorlaura at live dot come. Thank you for sharing your family's story with all of us. I will continue to pray for you and Raul as you seek the best possible treatment for him. Blessings.

  7. I would love to send Raul a card as well. My husband has EB as well. Praying for you and Raul.

    yvonnejp1999 (at) yahoo (dot) com.

  8. Caroline, i posted my email above, but have not received an email with the address for Raul's birthday cards. just wanted to touch base. Thanks!!!