ABC's and Spelling Vide

Overdue Updates

I have posted several blog posts lately, but haven't done a big update in a while! Raul has had several specialist appointments in the past few months: Dermatology, GI, Orthopedics, Plastic Surgery, Palliative Care, and Hematology. I did a big update on Dermatology back in March, discussed the Ortho. visit in April, and discussed our Methadone trial through Palliative Care. The medicine palliative care prescribed for bandage changes is still helping, and they are currently consulting other doctors on a different chronic pain medication. We also tried Nortriptyline, but that interacts with an antibiotic he needs to be able to take occasionally, so we are not going to continue that.

GI was an easy appointment, just continue what we are doing. Amazingly, after having three esophogeal dilations last year, he has now gone one year without one! We are keeping his reflux meds. at the same dose, and I have been fiddling with his g-tube feeding schedule to try to not overwhelm him with formula overnight. With Plastic Surgery we had them look at his legs, as those are his deepest wounds, and some of the ones that have not healed since birth. Non-healing wounds increase the chance of skin cancer, which is already increased in his type of EB, so we are looking into options to try to heal them. Doing grafts with his own skin is too risky, so we are going to try a product called Apligraf. If it works, it will still not be permanent, but it could help close those areas for a while. This would help enable us to work on his ankle contractures as well, since two of the large wounds are on the fronts of his ankles. With Hematology we will continue to draw labs every 4-6 weeks to determine when he needs iron infusions.

Raul also had an echo. of his heart done this Spring, which was normal. His type of EB can have cardiac complications, so these are usually done annually. Another test often done annually is a DEXA scan to check bone density. Raul had his first, and unfortunately he has Osteopenia, and is .1 away from Osteoporosis. His pediatrician does not think he needs extra calcium or vitamin D. It will help if we can work on his ankles so that he is able to bear weight on his legs. The tech. we had for the DEXA Scan was very rude, and did not seem to understand that Raul had developmental delays, so was not understanding her directions, and that he had large wounds (she was pulling on his legs to try to straighten them). Hopefully we won't have to do it again for a while! The last testing he had done was an eye exam, and they found him to have normal vision and no major issues with his eyes.

Raul spent one night in the hospital last week. He had been running high fevers on and off for a few days, and was already on oral antibiotics for skin infection. He did have a bit of a virus as well, so it was hard to tell where the fevers were coming from. The gave him one night of IV antibiotics, a blood transfusion (his blood counts had fallen unusually fast), and then switched him to a stronger oral antibiotic to be discharged on. We were glad it was so short this time!

Raul continues to do well in school. It is amazing how much progress he has made in the last two years! When he first came from Romania almost three years ago, he barely made sounds, and we weren't sure he would ever talk. Now he talks non-stop, counts, says please and thank you, knows the alphabet, knows songs, and even is able to spell a few words. He also uses his manual wheelchair incredibly well, especially given his lack of independent fingers!

Raul loves to have sleep overs! This was in Rockport over his school vacation.

Happy after his DEXA scan to get to play with the iPad

Raul getting himself up the stairs at the playground

He picked out his own pajamas...

 

Sometimes when he doesn't nap Raul ends up falling asleep playing

On his school field trip to the farm

In the ER waiting for our room last week

Getting ready for discharge!

Checking out an ambulance

Playing at Grandma's house

On the Cape

We came down to the Cape for the weekend to see my grandparents, and Raul has had some fun outings. We have been to two playgrounds, the beach, and a fire station! Raul has been having fun, and also likes staying with us all at a hotel. Yesterday at the beach we made sand castles, but today he just wanted to go up on the dock and wash some people fishing. Both playgrounds we went to were quite accessible, which was great. And yesterday afternoon my dad took Raul to look at the fire station, and they ended up getting a tour and hearing about the different vehicles!

Southwick's Zoo

We took an impromptu trip out to the Southwick's Zoo this afternoon. Raul was a bit fussy, but he did get more into seeing the animals at the end. He also rode a couple rides, and played on their playground. At the end he let us go up to a bunch of the habitats and say goodnight to the animals. Raul's favorite animals seemed to be the rhinos.

Mother's Day

Today we went to Raul's favorite playground, where he and my mom had gone on Easter. It is a large adaptive playground, but he just wants to play in the sandbox with the trucks! We stayed about two hours, and he was devastated to have to leave. He wasn't thrilled about it, but did share with the other kids. We think he will like going to the beach this summer too, as long as we bring trucks! Then tonight my dad babysat so my mom and I could go out to dinner together. Raul says they had fun!

Methadone Trial

We decided to try Methadone to help Raul's pain when meeting with palliative care a couple weeks ago. Started it on Saturday, and it was a disaster. It made him super itchy and irritable. We ended up stopping it yesterday as the side effects were just too unbearable for Raul. He has also been in more pain, and it seems that may be because he is developing more infections. He had a half day of school today, so this afternoon we played outside for a while, and now he is napping (likely still extra tired from the medicine). 

This is his face for smelling the flower haha