August, 2011 posts

Update on Dylan

Posted on Friday, August 26, 2011 10:44 PM

Hi everybody,

Just want to let everybody know how Dylan is doing.................

We just returned from our Disney cruise a couple weeks ago, it was a BLAST!

First off, the ship was HUGE, there were 4000 people on there and 3 different sets of elevators, in other words, it is very easy to get confused or lost!

This may be nothing, but it is concerning, Dylan kept getting lost on the ship. The first day on the ship we walked all over, and found all the areas we liked, Dylan had a room just for kids aged 11-13, called The Edge, that they could go and hang out to play video games, dance, play games, etc.  Well, on the 2nd day, Dylan wanted to go there and hang out, we asked him if he remembered how to get there, he told us yes.  The state room that we stayed in had cell phones that we could call/text each other while on board with no fees, so we explained how to use the phone to Dylan and went over the # for him to call us if he needs us. 

Well, that did not work out to well......Dylan got lost going to The Edge, he could not remember how to get back to the room, he could not remember the correct way to call us, and he could not find Guest Services.  He ended up crying and an older couple found him and took him to the Guest Services, who called me.  Once he got back to the room, he was so upset.......he was crying, scared, and frustrated, he said he did not know where he was or where to go!!!!  This continued to happen throughout the entire cruise, I felt so bad for him, and he would just get frustrated, shut down, and then not want to go anywhere. 

I went to our Make-A-Wish representative and explained the situation to her, the only thing she offered was to write down the phone# for Dylan to call us or her at guest services, and she said Dylan can always come to guest services and they will help him there.  I explained to her that he does not remember how to get there or anywhere else!  She did not offer any other help. 

Overall, we had a great time, it was just very frustrating for Dylan.  : (

We did take LOTS of pictures, in fact, we took so many that I am still editing them!  I hope to have them all done and posted this weekend for everybody to see. : )

When we returned, I emailed Dylan's doctors at Duke just to let them know about him getting lost, and that he also had some pains on the side of his head in the temporal area, but they only happened for a few days.  The doctor asked me if I thought his memory and cognition were getting worse, or if it is just more noticeable; I told him that it is very hard for us to answer that because we "notice" everything, and he also told us, just to let him know if Dylan has any headaches.  I also discussed the idea of getting a speech therapist to evaluate Dylan to see about treating him and giving him various memory exercises to try, especially since school is right around the corner!  The doctor agreed with me on this, and he thought it would be better to get an evaluation done here in case he needs to be seen a lot for treatments.  So, with the help of a few of my fellow therapists, we found a lady that understands and works with brain injury conditions, and Dylan has an appt. to see the Speech Therapist here in Salem this Tuesday the 30th.  Once she does the evaluation, I am going to keep a copy of it to take to Duke for the doctors to look at next month, as well as, the updated testing that I had the school complete with him at the end of the school year, that way the doctors at Duke will have more to compare with.

Speaking of Duke, we return with Dylan next month, Sept. 14-16th.

During these appointments, Dylan will be seen by several specialists and have a multitude of testing done on him, to see if the cancer has come back in his brain and/or the rest of his body, and to check all his glands and organs for any possible side effects from the radiation that was done last summer. We ask that you all please add Dylan and our family to your prayer list, forward this to your family/friends, and their church families and pray for a good healthy outcome for Dylan.

One more thing................
One of my friends offered to do a fundraiser for us, to help us pay for the expenses of the upcoming trip.  I have just started working part time, when scheduling and Dylan's health permits, however, we still need some help because I am not making anywhere near the amount of money I used to.  Anyways, my friend set up an online fundraiser and sent me the flyer with all the information on it to send to everybody.  She will be donating 100% of her commission to our family for the trip.  Everything is done ONLINE, no party to attend, and once you place an order, there is no waiting, it comes directly to you.  If anybody is interested in this please look at the FUNDRAISER LINK on this site for details.

Thank you ALL for your Support and Prayers!

The Prater's