Tuesday, June 30, 2015

First Day of Vacation

Yesterday was our first day of our vacation in Rockport. Raul had a fun and busy day! Lots of playing/building, a walk around a quarry, a trip to the accessible playground, tour of our house that is under construction, and dinner at a restaurant! Sunday night he didn't sleep very well, but last night after our busy day he slept much better! The weather has been perfect so far (other than the storms the day we arrived), it has not been too hot!

When we walked around the quarry he pretended that his stroller was a grating truck (the path is mostly gravel), and he enjoyed meeting a much of dogs and their owners. He really liked one greyhound, and while petting her he said, "Jade, come be my dog" very matter of factly. We also spent a little while flying our giant dog kite out on an ocean overlook at the quarry.

Then we got to go to one of Raul's favorite playgrounds, which he really enjoyed. While on the swings we pretended to be blasting off to space, and sighed and said, "I could do this all day". We also played a game with a ball we found where we would hold it and he would kick it as he swung up. 

Thursday, June 25, 2015

Last Day of Pre-K!

Today was Raul's last day of the school year, and last day of pre-school! He was so tiny when he started in 2012. Back then he was still imitating speech with noises/humming, but now he talks up a storm and can spell or sight read 30+ words! He had already started scooting, but in his first year of school he learned to go from lying down to sitting up on his own, and now he has mastered his power chair. His social skills have come a long way too, and he will now play with and talk to other children when we are out and about. 

First Day of Pre-School 2012

Last Day of Pre-School 2015

Monday, June 22, 2015

Committee Approval!

We heard from Minnesota last Monday that Raul had been approved by the external committee for the trial! It took them a long time to submit his info, but once it was, he was approved in less than two weeks! We were originally looking at taking part in the next protocol, which will begin later this year, but since Raul has been having so many issues they agreed that he could be on the current trial instead. 

The search for a donor has now begun, and thankfully he has many 8/8 matches to choose from! The first step will be to have 4-5 potential donors get another blood test, and then the hospital will choose who is the best match. After that the donor will have to confirm that they are willing to donate, and get a physical. So we are looking at a minimum of two months until going back to MN, and it could be longer depending on the donors availability.

Saturday, June 20, 2015

Water Fun

We have had some fun with water lately. Raul does not like to get fully immersed in water, like the tub or pool, but does like playing with water and getting wet! At the sprinkler park my mom would run him through all the sprinklers and he kept saying they were doing "action". 

Saturday, June 13, 2015

Final Baseball Game

Today was Raul's last baseball game! He was pretty tired and hot, but he stuck it out through the game. This was the first game he got to use his power chair for, so that was exciting. At the end of the game all the players got medals, and Raul has said he wants to wear his medal forever! Then the teams took team photos, and thankfully Raul cooperated and smiled for the pictures. After that he got to play on the playground for a little while, which he always enjoys! We weren't sure if he would want to do it again, but he is saying he does, and that he might want to try wheelchair soccer in the Fall!

Thursday, June 11, 2015

Needham Touch a Truck

Last Sunday we went to the Needham Touch a Truck. Raul really liked that they handed out maps of where all the vehicles were in the parking lot. He didn't want to get in any of them, but he touched everything, won a few things playing games and in raffles/auctions, and spent a while playing in a booth that had toy trucks to play with. He had a good time! 

Saturday, June 6, 2015

Providence Zoo

Today we went to the zoo! Raul brought his power chair, and drove himself most of the time, which was pretty impressive since it was a bit crowded! It is hard to maneuver through the crowds, especially when people are constantly cutting in front of you or stopping in the middle of the path. He brought the giraffe toy he had gotten last time to show the real giraffe that it is named after. With his power chair he can raise himself up to see over most of the enclosures, which is great! He had a list of which animals he wanted to see, so we made sure to get to all those. The ladies in the goat petting zoo area were very kind, and worked hard to get a goat to come over for Raul to pet. 

Then we went to play on the zoo's awesome playground. They have a wheelchair swing, which he loved, and then we went up into the treehouse, did some water painting, and played a little in the area with water sprayers. He wanted to stay in the water area longer, but we hadn't brought the right clothes and didn't want his power chair to get soaked, so we told him we would go back another time! The water definitely felt good, as it was much hotter than the weather channel had predicted! 


Friday, June 5, 2015

June Surgery

On Tuesday Raul had surgery at Children's. We had just made the plan the Friday before, so it was kind of last minute, but luckily it worked out! We got to the hospital around 12:15, and were there about nine hours, with four of those being in the OR under anesthesia. We had expected less than that, but they said everything, starting from the intubation, was just a bit more time consuming and complicated than they had expected. It was very good timing for the grafting, as going into the hospital that day his left ankle started pouring blood, which soaked through his bandages heavily. The doctor said she didn't see anything different there, so we aren't sure why it happened.

He was very funny going into surgery. The had given him a Versed dose more than double what he gets at home, but it wasn't doing anything, so they then gave him a bunch of Ketamine, which started to have an impact. Going into the OR he was asking them about all their TVs in there, and when the anesthesiologist started using gas Raul started turning his head to the left and right making the anesthesiologist follow with the mask while saying, "a little to the left, a little the right, perfect!" over and over, which had everyone laughing! 

First he had a bone marrow biopsy, which ended up requiring several pokes to get all the samples they needed for various tests. Second he had a new product put on his largest wounds called Matristem, which was then stitched into place, and his legs were casted (his ride side of his torso got the product too, but couldn't be casted). They had planned for him to stay overnight, but as there were no complications and we know he does better at home, the doctors agreed that he could be discharged from the PACU. We definitely made the right choice to come home, as he got a nice long night of sleep instead of being woken up all night for vitals!

He has been doing well post-surgery, but the following two days seemed a bit sore and seemed to have forgotten that he could still scoot with the casts. Today we had our first follow-up in Boston and the doctor put some special gel over the Mepitel layer to help moisten the product on the wounds.  Raul was not very happy about this, and it was painful having his leg bandages messed with, so on the way home we stopped at the farm for a quick adventure! This was the first time Raul has been there in his power chair, so it was fun seeing him get to explore, though he does seem to get tired from concentrating so hard when going long distances in his power chair.