May/June Update

The last couple months have been pretty busy medically. Raul's anemia has been hard to manage over the past few months, so he has had a lot of lab work, iron infusions, and blood transfusions. His bone marrow biopsy came back similar to the one from last summer, so that did not give us any answers for the anemia. It is most likely just progression of his severe EB. In the past two months he has had two iron infusions and two blood transfusions, and is still quite anemic. His hematologist also mentioned back in May that if he is ever having other imaging done, she would like to add on the scans to check for iron deposits, just to make sure he isn't having any issues with that. He also continues to have fevers that don't always have a clear source. 

Luckily he likes going to the infusion center, likes the nurses, and of course likes all their toys and activities! At his last blood transfusion the music therapy lady came in to see Raul. First she sang a song while Raul tapped on a drum and the baby and I shook a maraca, but then she and Raul did the cutest Twinkle Twinkle duet ever! She played guitar and they both sang. He will never do it for me if I ask, but I love listening to him sing while he is playing at home, and it was a treat to hear him sing with her when she asked!

At his last blood transfusion we were discussing that he was getting the blood to help his energy and make him strong, so he started saying he was going to be "strong enough to lift the heaviest rock into the biggest mining truck"! He says a lot of funny phrases these days. One of our favorites is one he uses when you ask a question that he either can't or doesn't want to answer. He will say, "I can't know, maybe ask me later". Then the other night he was still awake in bed when I went to fill his formula for overnight, so I asked him why he was awake, and he matter-of-factly stated, "I forgot to close my eyes".

Early in June he had a new type of grafting product placed on his leg wounds and his right side of his torso. The product was Matristem, and while we were hopeful, I did not see a difference in the wounds. We had the option of trying it a second time, but we have decided not to at this time as it requires anesthsia/OR time, casts, and painful in-office bandage changes as follow-up afterwards. Since he has been approved for the BMT now, we are hopeful that we will be heading out to MN in the next couple months, and that the BMT will help his severe wounds. 

Shortly after the grafting, Raul had another flare of extreme joint pain. This seems to happen when he has infections or viruses. His joints, especially his right knee, get excruciatingly painful. He has trouble sleeping as any time he moves he startles from the pain (can be up every half hour all night), and riding in the stroller or car is agonizing because of bumps. We have not found anything that really helps these episodes, we just have to wait them out. 

Raul is now out of school for the summer. He was going to attend the summer school program, but we have decided not to do that as we do not want him exposed to extra germs/viruses if he is going to be having the BMT soon. In June we had kindergarten visiting day at the school he will attend next year. It is our neighborhood school, and he will be in a regular classroom (still with an aide and IEP). He is excited that we can walk to school sometimes! For the visiting day we spent about an hour at the school. Raul went with all the other children to visit a classroom and do a picture frame craft, while I stayed in the gym for the parent meeting. It was nice to learn more about the school. 

 Raul likes doing schoolwork, so we have workbooks that we do at home when he isn't in school. We have been using Kindergarten workbooks, and he does great with them! Raul continues to do really well with his power chair, and is a great driver. In May we got a mini van with a wheelchair ramp so that we can take "big red" on more outings. We recently had our foster baby leave, and Raul is excited to have some baby-free time now. In May we did also visit one of my past foster babies who Raul likes to see. She has serious medical needs, and Raul is very sweet with her!