Spring 2011 Update

I was talking to someone the other day and they asked me if Riley was feeling better. It occurred to me they were asking because the last they heard (or read), was that he had a seizure on Easter. I typically don’t write a post unless something has happened and I need to get an update out to all of our family and friends. Well, I decided I would write and let you all know about a few things that have happened since the last “medical” update.

Riley had a short visit with his dentist, Dr. Fred, at the end of April. This was in preparation for an upcoming cleaning that will be done under sedation sometime in June. This will be combined with an eye exam at the same time, so he will only need to be sedated once. The last time Riley saw Dr. Fred was the week before we left for Duke in 2009. He had to have his appliance removed prior to undergoing chemo and the transplant. His nanny at the time, Alicia, helped me get him there. After Dr. Fred checked him out, VERY quickly, I was telling the hygienist about the last time we had been there. It was a surprise to me when she said she knew, she remembered Riley. She said, “Do you know what Riley said to me the last time he was here?” “No”, I said, “what?” She said, “I asked if his name was Riley.’ He told me, “Yes, but my mom calls me Riley Greene Jeans.” That was all it took to start the waterworks! She said she continues to follow Riley on Carepages and gives Dr. Fred updates.

Also at the end of April, Riley and I went on vacation. This was the first vacation either of us had went anywhere since 2008, before Riley got sick. My family rented a house on Isle of Palms in Charleston, SC. Lexi, Riley’s former nanny was able to go with us as well. We had a surprisingly easy drive with Riley. The first day, we put Riley in his wet suit and out to the beach we went. Lexi took Riley out into the ocean while I videoed and took pictures and I could hear his excited squeals all the way back on the shore. He loved it! As I suspected and predicted, the first thing he tried was eating sand. After a few attempts, he decided it wasn’t very tasty and that was not a problem any more. Riley enjoyed taking long walks on the beach with his Grammy, with nothing to slow him down or run into. It was a great week being with everyone and Riley made a few connections while we were there. He said Grammy and Diane (my sister) while we were there.

After getting back from vacation, we were faced with having to hire a new nanny. Alicia has moved back to her hometown of Paris, TN, while her husband prepares to deploy to Afghanistan at the end of summer. Luckily, we found someone pretty quickly. Amanda, yes, another “A”, has been with Riley for about 2 weeks now. She is very sharp and on the ball, and we think she is going to work out just fine. She will be going on vacation to Florida with Riley, Joel and his family next week, so Riley gets more beach time! I will miss him terribly but look forward to some time to catch up on sleep!

Riley went to a birthday party for Ben, one of my best friend Shannon’s son, at Pump It Up a few weeks ago. This was an adventure for Riley! My other best friend, Brandy, decided Riley needed to go down the slide. He did, several times, and absolutely LOVED IT! I think this is going to be a favorite activity for him this summer on days when it is rainy or too hot! While we were at Pump It Up, He actually said the words, “Pump It”. This was big. Riley knew where he was and was able to verbally express it. Since tapering some of Riley’s meds after we got back from Duke at the end of March, Joel and I have both noticed Riley seems to be much more clear and is starting to verbalize more, mostly saying some of the things he said when he first got sick. The last weekend I had Riley, he was on a roll. He said “pizza”, “walking home”, “swimming (while we were in the swimming pool)”, and “Regan Winnie”. Regan was a classmate of Riley’s at Hickory Valley Christian School before he got sick and he has always talked about her being a cheerleader! He also continues to talk about his very best friend in the whole world, Autumn. He still says some other small words such as “bath”, “eat”, and “pee” as well. Joel has been talking to Riley about their upcoming trip to Florida and actually heard Riley say, “Florida”. This is all exciting to us because up until now, most of his verbalizations have been sounds or words we could not make out.

That brings me to the biggest thing that has been going on over the past month or so. The behavioral doctor Riley sees at UNC each time we go back to Duke for check-ups, highly recommended Riley be provided with an Intervener. For those of you not familiar with this term, we were not either. Riley is now classified as “deafblind”. This term applies to someone who has duel sensory loss, significant loss of vision and hearing. While Riley’s eyes and ears are both “healthy”, he has no functional vision or hearing. Basically, his problems are not with the hardware, but rather how the information is or is not transmitted in the brain. After being told about deaf blindness, we were also told there is a program, The Deaf Blind Project, which is federally funded in every state. The Tennessee organization we were connected with is called TREDS – Tennessee Project for Individuals with Combined Hearing and Vision Loss. We have learned so much since being put in touch with this organization. We now believe Riley truly does have the capability to actually learn and become more independent. The key is the Intervener. An Intervener would be at school every day with Riley and would be trained on how to teach deafblind children. This is NOT the same as teaching someone who is deaf, or someone who is blind. Deaf blindness is a condition in which an individual has unique communication, learning and mobility challenges. Riley needs this focused, constant one on one interaction in order to bring his world to him. We have been working with the Hamilton County Department of Education to get approval for this for Riley. Unfortunately, it is beginning to feel like we are not “working with” but rather “fighting for”, this. I won’t go into detail on this, as it is still very much an unresolved issue, but we feel we are being forced to take this to a whole other level we were hoping we wouldn’t have to. I know those of you who have children know you will do ANYTHING to fulfill the wants and needs of your child.

Last but not least, a clothes update. Riley is doing a little better. Several months ago, I ordered a wet suit or scuba suit for Riley. He hated it at first, but after being forced to wear it while driving in the car so he couldn’t tear pull-ups and have accidents, he actually started wanting to wear it. Since it has gotten a little warm for the wet suit, Joel and Lena found someone to make Riley some summer suits. This basically consists of mesh type shorts and rash guard shirts being sewn together with a zipper up the back. After spending a small fortune for the right kind of clothing and seamstress charges, we now have several acceptable outfits for Riley to wear! Still no shoes, but at least he is able to go places now that he is dressed.

That pretty much brings everyone up to speed. Riley leaves for vacation (again) on Monday, so I’m sure that will bring with it more stories! I hope everyone has a safe and happy Memorial Day weekend!