Saturday, September 29, 2012

Last Two Weeks

We have been busy since my last update! We went to a picnic for foster parents in our region, and Raul LOVED the fire truck they had for kids to explore. He also explored a SWAT vehicle, and we watched a K9 dog exhibition. The even was held on the ocean, so we also saw lots of boats. It was fun to get to see lots of other foster families, and my mom got to meet my social worker.

 The next weekend we went to Rockport for one night, and met up with my grandparents for lunch and a walk. Raul loved being in Rockport! He could scoot through the whole house because there were wood floors, and he really explored a lot. He also liked being with the whole family in one place and having everyone to play with all the time! The next day we took Raul to a Touch a Truck event! There were about 30 vehicles that kids could sit in, honk the horns, explore, and look at. Raul got to sit in the drivers seat of an ambulance, dump truck, police car, Prius, and check out the back of a moving truck. We looked at all the different trucks. Raul was a bit overwhelmed by the noise, but once we got in the car he kept saying "car, car" and "truck, truck". He of course liked the fire truck best!

The last few weeks Raul has had his school assessments for starting preschool after his birthday. Because he is in Early Intervention, once you turn three you transition into public school preschool. Raul is going to be in the intensive needs class, which unfortunately is further from home, but it seemed like the best placement for him. He will receive his PT, OT, and speech in school, and also get to spend time with the other kids in the classroom. He did so well during his assessments! Even during circle time when he was a bit overwhelmed by the clapping when they introduced each child. There were eight other kids, and Raul even shared cars with a few of the boys both weeks. The second week he also sat at the table to do some stringing beads, puzzles, playdoh, and Mr. Potato Head work. We have his IEP meeting this coming Monday, and he will start school on October 22nd!

Raul has been having a lot of trouble lately with choking and gagging on his secretions. He has a lot of mucous in his secretions, and it is really hard to get it out. He gets so scared when he chokes, and it seems to hurt too. Yesterday it was so bad that he actually threw up formula twice. Then his voice was high pitched and hoarse, and totally totally gone. This means he liked aspirated, and irritated his upper airway and vocal chords. Because of his EB, that skin is super sensitive, just like his external skin, so the aspiration can cause a lot of irritation. He was also started back on antibiotics yesterday at the doctor as he had a 103 fever during the day, and the skin around his wounds looked somewhat red. Luckily his blood work looked pretty good, and he should be able to make it a few more weeks at least before his next blood transfusion! 

You can hear how Raul's voice is affected in this video:
video

Wednesday, September 26, 2012

Article about Raul


Just over a week ago I was contacted by a writer who was interested in doing an article on Raul, and his struggles with EB. She had learned about him through a friend that posted Raul's fundraising link. She quickly went to work contacting Raul's doctors, researching EB, and sending me lists of questions to answer. The result is a wonderful article that will both share Raul's story, and bring awareness to EB. Please take a few minutes to read her article that was posted by the first publication today!

http://pacificpalisades.patch.com/blog_posts/raul-a-romanian-butterfly-battling-epidermolysis-bullosa

Tuesday, September 25, 2012

Recent Videos

 Raul Giggling
video 

Raul "talking"
video

Saying "mama"
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Watching Pajanimals with Tata
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Sunday, September 23, 2012

Touch a Truck (Newton)

Today we went to Newton's Touch a Truck event! It was insane, with tons of kids and honking horns, but Raul seemed to quietly enjoy it. He got to touch lots of vehicles, and even get in a few to "drive" them. He honked a few horns himself too! 











Saturday, September 22, 2012

Night Away

Raul and I spent today and tonight in Rockport with family. Tomorrow we will be heading home to go to a Touch a Truck event!













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: http://www.indiegogo.com/romanianbutterfly?a=1229436.

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

Monday, September 10, 2012

Sunday, September 9, 2012

Lil' Folk Farm

Today we went to check out the farm where we will be having Raul's birthday part next month! They have pony rides, a petting area with goats/bunnies/chickens, llamas/cows/donkeys/horses to look at, and a party room above their barn. Raul wasn't feeling too well today, so he didn't want to do a pony ride, but he pet some animals, and really liked visiting with the other animals and watching two older girls ride in the ring. He spent a while with the donkeys petting them and sticking his feet out to them. And he did his sign of "nice to meet you" to a few animals, and always waved goodbye to them :)











Saturday, September 8, 2012

Sneak Peek

Here is a sneak peek at the pictures done during our family photo shoot last week with the Tiny Sparrow Foundation. More to come in the following weeks!