Saturday, October 19, 2013

Raul's Fourth Birthday!

Today is Raul's fourth birthday, and his very first birthday outside of a hospital! Four years ago today Raul was born in rural Romania. Back then, and even the first few months in the U.S., no one thought he would live this long! They actually offered hospice in Colorado. I am so glad we fought for him, as he was just getting started! This boy has more JOY than many healthy kids I know! He is always smiling, laughing, and cracking baby jokes. Doctors often remark that in person he does not appear as he does on paper. He has lengthy lists of medical and developmental issues, but continues to happily defy the odds. Raul amazes us daily, and I can't wait to see what is in store for him!

 


Raul's amazing cake thanks to Icing Smiles and Wild Flour Cake Company!



One of his new train tracks

New Mickey sheets


Even the elephant was made of cake!

Friday, October 18, 2013

Birthday Weekend

Yesterday was my mom's birthday, and tomorrow is Raul's birthday, so we have a big birthday weekend around here! We will be going to the zoo Sunday, and tomorrow having dinner and cake at home. Today Raul got two birthday presents! He got a box from The Butterfly Fund with some Kicky Pants clothes, and a car launcher! He loves it! He also got his copy of Everyone Belongs, a children's book about EB inspired by Raul's friend Ryan! It looks like his birthday was celebrated at school too, as he came home with a birthday crown. I am looking forward to Raul's FIRST birthday outside of the hospital!




Sunday, October 13, 2013

Santa's Village

Today Raul finally got the adventure he had been waiting for: Santa's Village! He was so excited as soon as we drove up. He had a great day, and wanted to go on all the rides. We also got to visit Santa twice! His favorite ride still seemed to be the kids only spinning swing thing, but the boat was a close second. He got a reindeer stuffed animal to bring home, which he is now very attached to!












Friday, October 11, 2013

Busy

We have been busy the past few weeks with the newborn foster baby! The baby left to live with relatives a few days ago. This weekend we are up in New Hampshire for my high school alumni weekend! Tonight Raul got to make new friends with some of the faculty children, and meet some of my old teachers. 

Bringing the baby home from the hospital
 

 

Sitting outside tonight at school

Clapping for the singing performance

Friday, September 27, 2013

New Little Brother

This week Raul got a newborn foster brother! Raul says he is "Raul's baby", and seems to like having him around so far! I can't post a picture of the baby, but here is Raul giving the baby a kiss after school today! 


Sunday, September 22, 2013

Happy Birthday Grandpa

My grandfather's birthday is this week, so we went down to Cape Cod today for a birthday lunch! Raul loved getting to sit on his lawn mower (or tractor in Raul's world). This past week was my dad's birthday while Raul was in the hospital, so we also gave him our gift today. And Raul even got an early birthday present! It was a fun day, and Raul did great both there and with the car time (he slept on the way home)!




Thursday, September 19, 2013

Busy Inpatient Week

We are home tonight after being inpatient since Sunday. We started at Children's Hospital, and ended at Shriner's. Last week Raul had been experiencing a lot more pain than usual, low grade fevers, and then Sunday there was an area on his ankle that appeared may be open to tendon. We took him to the ER at Children's, and he was later admitted to the ICP (intermediate care unit). He was started on IV antibiotics, given strong medicine, and seen by many specialists. On Tuesday they decided to place a PICC line under anesthesia to administer his IV antibiotics and much needed blood (he was severely anemic, hemoglobin down to 5.9). That night he was also transferred to Shriner's hospital to seek out more advice on his wounds and wound care. Raul enjoyed being transferred by ambulance!

Unfortunately there were a lot of communication errors and changes to his care during this transfer. The days at Shriner's were very stressful. We met some very nice staff, but unfortunately they were often overshadowed by the not so nice staff and the many communication issues. Luckily they thought his wounds looked good and thought I was doing a great job with his wound care. They believed that what we were seeing was not actually tendon or bone, but maybe tendon sheath. The surgeon did not recommend doing anything at this time as he thought there would be more harm than good. Raul got his blood transfusion and two iron infusions while there as well. Tonight before discharge they decided to pull his PICC line (originally we were told 6 weeks of IV antibiotics). He is not on oral antibiotics even, but they did write a script for his new pain medicine. We are hoping they are right and he doesn't have a deeper infection, but since there was no proof either way, we will have to wait and see!