April Updates

Raul had an iron infusion on April 1st, and again on April 27th. He continues to be quite anemic, and is symptomatic with fatigue and a high heart rate. His body just isn't holding onto the iron well, and at times his red blood cell production is decreased. Hopefully this issue will improve soon, or else we can hopefully find a different strategy for treating it! Raul scratched his eye at the beginning of the month, but thankfully this time it healed quickly and he only had to miss one day of school for it!

This month Raul also was battling infections. These infections caused some fevers, and set off the inflammation in his right knee. This area causes him intense pain with infections and viruses. He will scream going over every little bump in the car, when being lifted, and even if you just get close to his knee. He also wakes up screaming very frequently when sleeping due to this pain. Thankfully now that his two week course of antibiotics is ending this has improved. He is still guarding it a bit, and will lift that leg with his hand instead of just using his leg muscles, but he is not in as much pain. The wound on this knee also got very deep again this month. 

We took him to the ER on the 22nd due to his knee wound. The wound has a fairly large area that is showing tendon and even a bit of patella. Unfortunately, the visit was not very productive, but plastics decided to see him outpatient later in the week. The ortho. team did not think he needed to be worked up for a bone infection at this time. Raul really likes Blaze, the monster truck show, right now. But he proved at the hospital that he is actually learning things from it! A nurse came in to ask me about putting in an IV should they need to do one, and I was explaining how we do it so that nothing sticks to his skin. I didn't even realize he was listening, but Raul piped up and said, "that's adhesion!"

When we saw plastics outpatient they looked at the wound, and said they would contact Cincinnati for advice. We were supposed to hear back from them at the beginning of this week, but still haven't. If they will not do the grafts here soon, we will likely end up traveling again to get them done. He should not have to be going around with a wound so deep that his tendon/bone exposed!

Hopefully May will bring more answers/treatment for Raul's knee! Last I checked in with Minnesota, Raul's case had not yet been submitted to their external committee, so it will likely be a while before we hear back from them about if Raul is approved. 

End of Vacation Week

Yesterday Raul was playing with Harold the helicopter while I cooked dinner. He started asking for help, so I asked what he needed help with, and he said, "Mama, I need some help, I need some wind power!". He wanted me to blow on the propellers to get them to spin! Another science lesson thanks to Blaze and the Monster Machines! 

Today was a bit chilly, but we went on a trip to Raul's favorite playground! It has an accessible section, but what he likes there is the sand box with construction vehicles. He played with a few other little boys while we were there, and liked digging holes and making mountains of sand. He wanted to make a sandcastle too, but the sand was too dry. After the playground he got to pick out two Matchbox cars at the grocery store with his tooth fairy money! Well actually, he was a bit nervous about the tooth fairy and said he didn't want her to come, but said that I could put tooth money under his pillow. 

Raul's First Lost Tooth!

Raul lost his first tooth today! The adult tooth had already come in behind it, so I am really hoping it will start to move forward now, as it cuts into his tongue. Raul was very excited! He has been worried about his baby tooth coming out and said he needed to take care of it, so he and my mom made a special box the other day to hold the baby tooth.

Playground Day

The weather was beautiful today, so we spent some time at the playground. Raul asked to use his stroller, we think it was a bit too tiring to go that far concentrating on driving his power chair last time. There were lots of children at the playground. Raul had brought a truck that he likes to send down the slides.  A little boy came over to see him, and we figured out that it was a friend from his class at school! This little boy, and another little girl, played with Raul on and off while we were there. They all took turns sending the truck down the slide, and the other two also took turns going to get it and sending it back up. They all did great sharing and talking to each other!

Zoo

We had a busy day today! In the morning I had a doctor's appointment, so the kids stayed in the waiting room with my mom. Then we drove about an hour away to a car dealership for wheelchair vans, and looked at some used mini vans with wheelchair ramps. Tomorrow they will be bringing one to our house so that we can try to get Raul's power chair into it, and see how that goes. The car place was near the zoo, so we decided to go to the zoo for an hour before they closed as it was such a nice day! Raul's knee has really been hurting him again, so he had a hard time with the bumps in the road while we were driving, but he was excited about our adventures. We ended up having time to see everything Raul wanted, as well as a few new animals. He particularly liked the seal, giraffe, elephant, camels, and the kangaroos (there is a new spot where you can walk along a path inside the kangaroo area). 

Playground

Today Raul went to the playground in his power chair for the first time! He did an amazing job driving his power chair both ways. He also drove his power chair onto the play structure and around all the ramps before deciding to get down and scoot for a while. He talked to a bunch of the other kids who were playing, and told them all about his cool airplane shirt. Then he saw a girl on a bike and decided to get back in his power chair to race her. The little girl asked about his power chair, and seemed to think it was pretty cool. We told Raul that if he went over in the grass or on the basketball court area he could drive fast and silly for a while, which he had a lot of fun with! I took some videos that I will work on uploading later. It is so fun to see him having all these new experiences! 

Independence!

Raul brought his new power chair home from school today. I am already amazed watching him do so many things that he could not do without it, and we haven't even taken it out anywhere yet! He got himself from the bus to our apartment (multiple doorways, an elevator, and a couple tight turns), can elevate to sit at the kitchen counter, can turn on/off the lights, and can reach the sinks! I am excited to see what new experiences he will have outside the house!

First is a video of him driving at school the day he got his power chair. Second is a video of him playing with the lights for the first time at home today. I wish I had gotten a video the first time he did it, as his face just lit up! This chair can elevate, tilt, and lower to the ground so he can scoot himself in/out of it on his own. I think he will like his new independence!

Happy Easter!

Raul had a good Easter! We went out to lunch with my parents, and he got to open his Easter basket. Then we all came home to play for a while, which included throwing Easter toy parachutes off our balcony, playing trains, and making a house from a bandage box! Raul was very excited for an occasion to wear one of his bow ties, and still doesn't want to take it off! 

Drumlin Farm

Today it was finally warm enough to go to the farm for the first time this year! Raul had a good time seeing all the animals, vehicles, and playing in the play area. We got to see a fisher cat be fed, which was cool, and Raul fed a goat some hay. We are looking forward to going back once the rest of the snow has melted!