March 1 - Can you believe it??

I know it has been a while, once again, since we've posted. Aside from being just plain busy, I feel like I just don't have the strength nor the energy to do it. I know that sounds pretty dramatic, but I don't know how else to describe it. Some of the things that have been going on - we were approved for 10 overnight visits with a nursing aid. We got a sweet girl, Alexis, who just graduated from nursing school. She has been coming on Sunday, Tuesday and Thursday nights. Unfortunately, last Sunday was her last visit. We requested more visits but have been denied twice. Some nights Alexis was very busy with Riley when he doesn't sleep and others, she was asking me for things to do to keep her busy because he would sleep all night. She also became the chief folder of laundry at our house, and, one night she even took on the task of organizing Riley's playroom. This became the room where everything went when we got back from Duke. There were tons of new, unopened toys, along with all of Riley's "old" toys, along with decorations from his hospital room, things he made at Duke when he was able, etc. At least it is categorized now, and once again, waiting on me to do something with it. We will be sad to lose Alexis as Riley's night nurse..

Let's see. What else? Four of my oldest, or should I say longest friends came for a long weekend back in January. The 5 of us get together once, sometimes twice a year, usually some place a little more exciting than Chattanooga. Last year, Riley and I were suppose to head to Charleston, SC on a Thursday. I was going to drop him off with my mom for a long weekend, and head to the beach with the girls, but unfortunately, the day before we were to leave is when Riley had his seizure that lead to his diagnosis of ALD. It is so hard to believe that this Saturday will be one year since the devastating news. I wish I could say things are so much better than a year ago, but that wouldn't be true. I can say we are blessed to still have Riley with us, no matter what.

Grammy (my mom) came to stay with us for a week around the middle of February. She started taking Riley on 1 1/2 hour rides in his wheelchair all over our neighborhood and the adjoining neighborhood. This seems to be one of his favorite things to do. We will definitely have to keep this up!

Since I last wrote, we were able to get an appointment at Siskin Children's Institute. Riley had his initial assessment and has been back for one more PT appointment, but unfortunately, we are having a little trouble a regular therapy schedule started. Both we and Dr. Stephanie want him in PT, OT and Speech therapy at least 2-3 times per week. Hopefully, we will get this worked out soon. One thing we were able to get from Siskin on loan was a gait trainer. This is basically like a baby walker, but it is big enough for Riley. His upper body can be strapped in so he has to stand up-right. Joel gets him out almost everyday and has him walking down to the neighborhood pool. This is 3 houses away from us, so it is a good little walk for him. Still not much luck getting him to walk without it, although he can - he just chooses not to.

Several weeks ago, Riley was put on an anti psychotic drug. This was to hopefully help with his compulsive spells, as well as help with his mood. We are to the point where we just want him to be happy. Have you ever been around a 7 year old that is only happy for very brief periods each day? It is very hard to see when he should be playing and having a great time with his friends at school and church, etc. Just this weekend, we think we are beginning to see some progress.

Speaking of school. I think we are finally on the right track of getting Riley an assessment meeting by the special needs people with the school district. His homebound teacher has been a bulldog about this and I don't know what we would have done without her. You would think all this stuff just takes a phone call and then people are there to help you, but it doesn't seem to work quite that way, and of course we have no idea what the protocol is. I think we have actually made progress in beginning to find out what kind of programs are out there for Riley when he is no longer required to be homebound. Hopefully, we will also be able to use the resources available in the school district to better understand what vision impairments Riley has. We know Riley can see a little, but really have no idea how much. We think by the way he clings to us, it isn't much at all, and he will basically have to be taught as a blind child would.

Since we are almost a year post transplant, we have started getting Riley out a little more. I really thought this was going to be a struggle between me and Joel (the germ-a-phob). I know, he is only that way because of Riley's safety, but we both can agree that at some point, his mental health comes in to play and the benefit of getting him out more is worth a very, very small risk. Riley has been to the mall at very, very slow times (which is not good to hear about when you are in the industry I am!), a Pictionary party with some close friends, out to eat at Big River and a trip to the grocery store in his wheelchair just yesterday. All successful outings, although he did sit with a blanket over his head pretty much the whole time at the Pictionary party. But he wasn't complaining!

That about brings everyone up to speed on what has been going on with us with one exception. We have lost our nanny, Tiffany. She has some things she needs to take care of, but we still expect to see her often. She was a tremendous help to me in my transition back to work, and with Riley. We love her and wish her only the best! Just as we were blessed to find Tiffany, we were also blessed to find our current Nanny. Finding someone to care for your child, especially with the needs Riley has, is a very daunting thought. I had already started thinking I may I have to go back home and stop working for awhile until we found someone, and that was not something I was necessarily prepared to do. I was mentioning this one night to Riley's night nurse, Alexis, when she said, "I would love to take care of Riley." I didn't even think this was an option since she just graduated nursing school, but for reasons I don't even care to understand at this point, working a normal, daytime schedule is what she wanted to do while she studies to take her test for her LPN, and she is considering going back for another year to year and a half, which would be great for us. Regardless, we have her for a minimum of 6 months and that is good enough for us right now. I truly believe God sent these two wonderful people into Riley's and our lives when we needed them most.

Our next big step is taking Riley back to Duke in April for his one year follow up. At this time, he should get off the majority of the meds he is on and I could not be more happy about that. Now that I've practically written a chapter, I will close by thanking all of you again for your thoughts and prayers for Riley. Don't let up! And, I will try to do more frequent and SHORTER updates going forward.