Memorial Day Weekend Baseball

Today Raul had another baseball game, and he was much happier about it this week. I think he is getting more used to it, more comfortable with the new people, and of course the blood transfusion a few days ago helped too! He got to bat twice, and hit it himself both times! After the last game I started looking for a bat he could hold himself, and was able to find a foam one that works. It also came with a foam ball that he can throw much further than a regular baseball, and today before the game he played catch with two other little boys. He was a little nervous that he couldn't hit the regular baseball, but he did! Afterwards he got to play on their playground again, and then we stopped at the library on the way home to play with their trains and pick up a few books. He went to sleep shortly after getting home, and is still sleeping over four hours later...

Memorial Day Parade

On Sunday we went to a (early) Memorial Day parade. It was a great parade, and the fire station was also having a "touch a truck" with their ambulance and fire truck. Raul got to meet Clifford the Dog at the fire station too. His favorite part of the parade was the Shriner's, as they had these mini fire trucks, monster trucks, and semi-trucks that they were driving. He also liked the real fire trucks and the military vehicles. It was a bit hot, but he still enjoyed it! When we got home he wanted to do arts and crafts, so we made a kite to hang on our apartment door. Today he had to get labs done in the morning, and then in the afternoon before napping he decided he wanted to make an arts and crafts treehouse. He colored the walls, helped put the popsicle sticks on the roof, and directed me on what to add/how to do everything else! 

 

Gloucester

Today Raul stayed home from baseball, as he hasn't been feeling great and it was also supposed to rain. Later in the day we headed to Gloucester for a Touch a Truck event, only to find out when we got there that it was postponed due to rain! It didn't actually rain, so we went to the school parking lot so Raul could check out all the buses, then to the waterfront to check out fishing boats, and finally to our house that is under construction. He actually wasn't disappointed that the event didn't happen, as he liked being the only one there to touch the vehicles (no crowds, lines, or honking horns)!

Baseball Weekend #2

This weekend Raul joined a different baseball team that had more children in wheelchairs and more younger children. He had missed the past two days of school, and still wasn't feeling great, so was a bit grumpy, but he did great! He got to hit two different times, and my dad and I took turns taking him around the bases. This league happens at a local school for students with disabilities, and Raul was most excited about playing on their accessible playground after the game! Everyone was very nice, and we are hoping he will warm up to them a bit more next weekend now that he has met them. 

 

 

"Accessible Explorations"

Today was our first really warm day! We went to Drumlin Farm for their "accessible explorations" program. The activities were going in the goat yard/feeding the goats, planting and exploring the garden, and brushing the pony. Raul wasn't in the best mood because of the heat, but he liked both animal activities. He wasn't as interested in the gardening, but that was mostly because there is a play structure with a steering wheel to one side of the garden that he loves. Then tonight we had my belated family birthday party, and Raul enjoyed helping unwrap the presents! My sister also brought him a few library books to read, and he thought the "A is for Musk Ox" book was hilarious!

First Day of Baseball!

Today was Raul's first day of baseball! He was a bit nervous beforehand, but got more excited when we got there. He had two nice buddies to help push his wheelchair and help him participate. The other players were all older (the team can have from ages 5-18), and he was the only one in a wheelchair, so he was a bit overwhelmed, but he hung in there! He talked to his buddies, got to throw a wiffle ball a few times, and at the end got to hit the ball and go around the bases. After his turn hitting he asked to come sit with me, as he was worn out, but we did rally for one more go around the bases at the end. The only time he really lost it was when they tried to take a group picture at the end; he was having none of that! 

The town where the baseball was had a fair today, so on the way home we stopped for him to see the police cars and firetruck! He even got to sit in the police cars. Then he demanded ice cream, which of course he didn't eat, and quickly pet a giant rabbit before we headed home. He is excited about the activity books that the firemen and policemen were handing out. Even though he was overwhelmed, he says he had fun at baseball, and does not want to take off his baseball shirt!

Throwing the ball into the net (you can see the ball just past the coach)

First time hitting a baseball!

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.