Travel/Cincinnati Zoo

Friday Raul had school, and then in the afternoon he had his iron infusion. I saw his lab results later that night, and it was good that we did his iron then, as his levels were getting quite low! Saturday morning we headed to the airport to fly to Cincinnati. Raul loved sitting in the airport watching all the vehicles and planes. He also enjoyed the flight, and we had a plane that had internet, which was great. He was really funny when we landed, and had everyone around us cracking up. He kept excitedly announcing that we were in Cincinnati and that he loved Cincinnati. They gave him one of their wing pins, so he also kept announcing that he was the pilot. He loves our hotel room, as we are on the 9th floor overlooking a major highway, and he just wants to sit there watching all the vehicles! Last night we had dinner at one of the hotel restaurants, and Raul was upset to have to leave his highway view, so the lady in the restaurant gave him a stuffed elephant, which perked him right up!

Today we went to the Cincinnati Zoo, which was an awesome zoo. We saw almost every animal, and Raul was in a really good mood. It was one of their Halloween events today too, so he got to do some trick or treating through the zoo. We spent a lot of time with the giraffes, and his other favorites seemed to be the tigers, elephants, the insect house, the rhino, and the camels. The insect house also had naked mole rats running through tunnels, which he thought was quite funny. Before we left we went back to the giraffes for feeding time, and Raul got to feed them two crackers! He was very smiley about that, and did great holding it until the giraffe took it with its tongue. He has been obsessed with giraffes lately, so loved being able to be so close to them!

Summer Update

I haven't done a long update in quite a while! The beginning of our summer was very busy medically. Raul started having extreme pain in his right knee in late-June, which led to us doing an MRI to look for bone infection after ruling out fractures in his leg and hip with x-rays. We had the MRI right before the 4th of July, and soon after I was called back to be with him in the recovery room (he had anesthesia for it), the nurse came and handed me a phone. It was his pediatrician on the line, and while he did not have a bone infection, she had been contacted by the radiologist as they were very concerned about how his bone marrow appeared on the imaging. The doctor said she was trying to get in touch with hematology/oncology to figure out how we could run more labs that day. I asked her directly, and she said they were concerned about Leukemia.

Luckily, Raul's hematologist/oncologist who manages his anemia was nearby doing a procedure along with another oncologist, and both received calls about Raul, so she was able to come over to the recovery room. She was able to get them to draw labs in the recovery room, and we had to wait about an hour to come back. They needed to make sure he was stable enough to go home for the weekend, and then would schedule a bone marrow biopsy the next week. We got his labs back, and thankfully were able to go home shortly after!

Later that weekend he started having issues swallowing, and by mid-week the next week we ended up going through the ER due to his choking on his secretions. The next day he had his esophogeal dilation and bone marrow biopsy/aspirate. A couple days later we got the first results, and they were negative for Leukemia, but we had to wait a bit longer for the full report. Thankfully those were negative for cancer as well, but were still quite abnormal.

                                         eating ice cream after his esophogeal dilation

I consulted with the doctor that does the bone marrow transplant trial for EB to get his take on the results. He said that is would not be surprising for someone with severe EB to have these results, and that it could cause increased bone pain. However, Raul's pain is focal pain in his knee, so he said if there was an underlying deep infection that we missed, the quality of the bone marrow could continue to worsen. 

This is basically where we are still stuck now. Over this summer, he first went 35 days between antibiotic courses, then 18, and most recently 9. Every time he stops the antibiotics the extreme pain comes back and he cannot fully function because of it. He has been on antibiotics since last Monday now, and is still in a fair amount of pain. We are considering a repeat MRI, as well as running more labs when he has his iron infusion next week.

 Next Saturday we leave for Cincinnati! They have one of the few multidisciplinary EB centers in the U.S., and are the closest one to us. Our main goal in going is to address his non-healing wounds with the plastic surgeon, and hopefully do grafting. We also plan to see dental/have his teeth cleaned under anesthesia, pulmonary/a bronchoscopy, ENT, Cardiology, and do a whirlpool bath under anesthesia. We will be there about two weeks it looks like. Raul had his third birthday in Cincinnati, and will now have his 5th birthday there as well! 

 

Raul has also been in school for a few weeks now; though missed most of this past week due to the pain as well as some fevers. The past few months, his speech has really been coming along amazingly! I was watching some videos from last year, and there is a huge difference with how he speaks now. He had to change classes this year, and I think that has been a bit of an adjustment, as on and off he has struggled with having to go to school. This year they have special class though (Drama, Art, Music, Science, and P.E.), and he seems to like that change! 

For those that want more frequent updates, I do short updates more often on facebook: https://www.facebook.com/RallyForRaul

Binkeez for Comfort and Peach's Neet Feet Superhero Party

Today we went to a superhero party put on by two wonderful organizations, and Raul had a great time! There were lots of arts and crafts to do, matchbox cars to play with, and the Bruins bear (Raul had fund chasing him around and then pretending to be scared while laughing!). We also were able to meet another local EB family! Raul's favorite activity was making a "paint mess" while painting a banner. This involved painting his face, bandages, and splashing his hand in a puddle of paint! We are glad that we were able to be part of this wonderful event!

The blue marks are Raul's hand prints!

Our EB superheroes and a super sister

First Day of School!

Today was Raul's first day of his final year of pre-school! The schedule changed this year, so he is doing a late start in the morning, but then staying through the end of the day. I didn't hear anything from his teachers, but another mom saw him during the day visiting the lunch room and she said he was happy, and he was in a good mood when he got home!

Edaville Railroad

Today we went to Edaville railroad for their "Day Out With Thomas" event! Raul was very excited to see the big Thomas and ride on the caboose (which is their handicap accessible car, but luckily also the one he wanted!). We took the train ride through the cranberry bogs, and Raul almost dozed off again after falling asleep in the car. He isn't feeling very well due to infection, and started antibiotics yesterday, but they haven't really kicked in yet. Whenever he has infections he is in a lot more pain, and has a hard time with any bumps while in the car or stroller. So we tried to go in their Dino Land area, but didn't make it very far as it was a gravel road and just too painful. He did like the two we saw, though! He didn't want to go on any of the rides, but we walked around and looked at them. While walking around we saw the craft area, and Raul got a temporary tattoo of Thomas, which he is very proud of! We also played a bit with the train tables, and met Sir Topham Hatt (this got big smiles)! His favorites were the train tables and just watching the big Thomas go by! 

Labor Day Weekend

We went up to Rockport for Labor Day weekend, and Raul had a great time! Several trips to the playground, seeing the huge sailboats that came for the Gloucester Schooner Festival, and lots of playing with the whole family! It got a bit hot the last two days, so by then he was ready to come home to the air conditioning, but he had fun!