Sunday, December 29, 2013

Look At Our Smart Boy!

Raul randomly started saying this line from The Three Little Pigs the other day. We haven't read it at home, so I think he must have heard it at school and on TV. He says "I'm gonna huff, I'm gonna puff, I'm gonna blow (insert something around him) down".
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And look at Raul count to ten on his own, and then from ten to twenty with me! He is such a smart boy!
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Tuesday, December 17, 2013

The Secret Stocking Project

Today we got our box from the Butterfly Fund's Secret Stocking Project. The Butterfly Fund supports children with EB, and other catastrophic illnesses. For the past few years they have had a project to give Christmas gifts to the children with catastrophic illnesses, as well as their siblings. We have been lucky to be a part of it each year since Raul came home! This year Raul had even more fun opening his presents, as he really understands it now. He was so excited to see the presents under the tree when he got home from school! With just a little help, he was able to open his gifts, and he even took his new truck to nap with him!



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Sunday, December 15, 2013

Big News!


 

Not long ago we found out that Raul had been granted his green card after a lengthy process, and yesterday it came in the mail! This means that Raul is considered a permanent resident of the U.S., and in five years could potentially become a citizen. We will not have to do yearly paperwork anymore for U.S. Immigration. We may also be able to take him back to visit family in Romania now!

Saturday, December 14, 2013

Christmas Preparations

When he got home from school the other day Raul played a game where he would back up, then charge into a snow pile with his wheelchair. He thought it was quite funny!

Today Raul was calling for me from his room, and I went in to find this. He had climbed up onto the playpen trying to reach the movie he wanted!

Raul was so excited to get a tree for our house today

Concentrating hard on decorating the tree at my parents house


Meredith and Pat with one of the cookies we made

Raul having iPad time



Wednesday, December 4, 2013

Hospital Stay

Raul recently spent six days in the hospital. He was admitted due to infection in his legs and excess bleeding from one of his wounds. He also had a bad virus, which turned out to be Adenovirus. While there they looked into whether he may actually have a deeper infection in his legs. He had xrays and MRIs of both legs, and while there were some abnormalities, they determined that he did not have bone infection. He does have extensive soft tissue damage, muscle wasting, and oesopenia though. He ended up getting high fevers at the end of his stay causing them to do a few more tests, but they determined it was just from the virus. Luckily he was able to be discharged to finish out his course of strong oral antibiotics for his infections at home. It is hard for him to be in the hospital as he has to be in isolation, and this time his room was right next to the playroom so he knew there was fun he was not able to take part in.

They also did immunology testing, and we will follow up outpatient with an immunology doctor. He is also starting some supplements, as some of his vitamin levels were quite low, which is common with severe EB. Hopefully when his levels rise he will have a bit of increased wound healing.

Raul is looking forward to going back to school, but unfortunately is still having viral symptoms that are keeping him home. I am sure he will be very happy once he is better and can go back!


Having his hair washed

In recovery after his MRIs


Sleeping with his bulldozer

Playing on the window bed

Saturday, November 16, 2013

Not Much To Report

Not much to report on Raul. He has had a few appointments, and was on antibiotics for skin infection a couple weeks ago. We saw hematology, and he will be restarting iron infusions next week, and probably also starting Epoetin injections to help with his anemia. Right now he is playing a complex came with his fire house and cars/trucks!



Tuesday, November 5, 2013

Raul's Gymnastics

Raul was being a rolly polly today and showing off his gymnastics skills!

He can lift himself really high like this, and sometimes lifts his legs too

This was a new move today, up on his hands and toes

Then he just got silly!



Saturday, November 2, 2013

Raul's Day in Rockport

Today my mom and I were at a bridal shower, so my dad decided to take Raul up to Rockport for a few hours. Raul was excited as there is a digger behind the house for landscaping. He also got to see our dog Teddy, who he loves!





Thursday, October 31, 2013

Happy Halloween!

This year for Halloween Raul was a cow, which he was very excited about! We went out a bit late, but went to a neighborhood that was wild, and certainly hadn't slowed down yet! Raul really didn't even want to take the candy, he just wanted to say "Happy Halloween" and moo at people. We think he would have liked it better if it had been lighter so he could have seen the other costumes better. He did keep saying he wanted more houses though!








Saturday, October 26, 2013

Debra Event at MoMa

On Thursday night we attended at fundraising event at MoMa for the organization Debra. This year they were honoring families who have adopted children with EB, and we were included in that group! Raul had an adorable bow tie with little blue convertibles, which he was very proud of! It was great to see the other EB families, and take part in the event. Raul was very sleepy, and joined a group of the little ones sleeping in their strollers. He was pleased with our auction winnings though, which included sesame street gear and toys! He slept most of the way home after our busy trip.