More Progress... and even giving Kate speech lessons!!

We are still enjoying the progress that has come with the steroids. Everything he says now is understandable and clear. He is so much happier, and that is always the most welcome of any change we could have. We are almost back to where he was, but we'll take what we've got and be grateful.

So, these are cute pictures from the other day when Dray decided to share his speech therapy experiences with Kate. He got out a bunch of picture cards and laid all of them out. He got a chair for Kate and sat her down. After that he proceeded with his lesson. He would say, "Kate which one is for eating," and she would point, "Good job! Which one is up in they sky?"and on,"Which one drives on the street?". It was so cute and he was so excited to be in charge and teach Kate a few things. Kate was a trooper and played right along with her brother's game. So fun to have him doing so well!

Knock on Wood... we see some progress!

Dare we even say it... we are seeing some improvements in Dray. He is still a happy kid, he doesn't talk incoherent sentences (maybe once in awhile), but he really is responsive to any comments and questions. He answers our questions!! I can understand MOST everything he says and doesn't have to work so hard to get the words out of his mouth. Also, he is saying and mimicking new words every now and again. Which is awesome for him. We are still trying to push the sign language, so that he has that as a back up, and he does awesome with it. He can understand a lot in sign and uses more and more everyday. He knows his entire alphabet and a lot of numbers (he knows those better than me). He is starting to spell out words (by signing what the word starts with). Especially people's names. It has really been helpful and we get so excited to see the confidence he has in being able to understand us all the time. So, Dr. Thompson has switched to the "pulse" method of steroids. He will only take his dose on Friday night and Saturday morning with a dose on Wednesday night as well. We pray this will yield the same progress we have been seeing. It has made such a difference in our home to have him finally able to communicate better. What a sense of peace that prevails when our little guy is doing better. Everyone can sense the change... it is a very tangible thing to all and we are so thankful to see any and all changes for the better. He takes it all so well and continues to fight to speak and communicate. We have decided that Dray is a fighter and does not give up on trying... he is always trying!!

Friday night he got to stay at Grandma and Grandpa Russell's house for a sleep over. I told him he got to go to BYU (which he signs very well) and he was so excited. He told Grandma, once he got in the car to go, where she should turn and which direction to go. He told her she was doing a good job when she followed directions correctly. Grandpa took Kate and Dray swimming in the "scuba diving pool," that is the diving pool with boards, and he went off the high dive all by himself! He just climbed right up and jumped off. Swam all alone to the edge to get out and do it again. He is so brave!

Interesting day!

Yesterday was an interesting day. I was having a bad day, not unusual, but not just feeling sad or down I was feeling so physically weak along with that. I felt such fatigue from everything: physically, emotionally, etc. I was trying to just get through another day, and right at that sad moment a very interesting phone call came. It was Dray's school teacher, Jamie Miller. She was so sweet and told me that she was going to miss Dray so much that she wanted to come see him once a week. This was so fascinating to me. I love Dray to death, but someone else having such a love for him was beyond anything I ever expected. We talked about him and at the end of our conversation she told me what an incredible and special little boy he is.... and how blessed I am to have him. I just broke down to this new stranger on the phone because of how blessed I felt at that moment that Dray had made such an impression and that someone could just love him like that for who he is... even with how hard it is to communicate with him at times. I know he is definitely a unique little guy and I do feel blessed, but sometimes I take him for granted because I am so focused on trying to get him better. I want him to be his old self so bad that I don't appreciate what I have right in front of my eyes.

Jamie and her 4 year old son, Kade came over later that day. Jamie is amazing and Kade was such a doll and played so well with Dray. I was so overwhelmed at this experience and so grateful for people in Dray's life that love him for who he is. After they left he was so full of life and energy. He was saying things he hadn't said in so long. You cannot ever underestimate what an impact love and acceptance can mean to this little boy. I know he feels that from Jamie and it made such a difference to Dray. Thank you Jamie and Kade!!

Progress update

Dray's progress has been slow, actually non-existent, I should say. He has really taken a huge nose dive in his ability to speak. He has moments where he talks very clear and I have some hope. But, most of the time it is either jibberish, repeating the same word or phrase, or just out of breath from trying to say a word or phrase. When he goes through these periods of regression he sounds like a deaf child when he talks. It's crazy how much things can change when he is in a better phase. I feel like I'm going crazy trying to be patient with him because I cannot even imagine how difficult this must be for him, but I feel so frustrated. He tries so hard to talk. I don't want him to not try, so I can't let it show how painful it is for me to hear him talk like he does. It does bring me to tears just listening to how strange he sounds and how awkward all of his words come out. I just know and remember him so differently and I'm finding it difficult to reconcile the two different Drays.

We took him swimming yesterday. He went off the diving board with all of the big kids. He ran and took a big jump off the edge. Everyone watching was amazed and kept asking us how old he was because he could swim so well by himself. He has definitely put his efforts into physical things that he can learn visually. He excels and becomes a whole new child in these activities. We love to find things that he can find confidence and happiness doing.

He is still on the same dose of steroids (prednisone). I talked to Dr. Thompson about his progress yesterday and he assured me that I needed to give it more time. He probably gets tired of over anxious parents that want results right away. It's not so much me wanting results as it is that I don't want to waste valuable time on meds that don't work!! Today I started his picture board for his schedule. He has really taken to it and puts in his own things for his schedule. Like tonight after his dinner picture he put in the trampoline picture. So, we let him go out and jump before bath time. It's fun to see him understanding orders of things and what's coming next. It gives him a sense of confidence in his ability to make decisions and in what's going on in his crazy world. I hope my next entry will be about how I am seeing progress in him. I will say he is staying happy and that is all I can ask for at this point. He is laughing and smiling. His teachers at school just adore him for his sweet temperament. Today was his last day, because we are having home services now. Dray and his bus driver have become quite close in just a few days. Dray looks at him adoringly and the bus driver just adores him right back. They gave each other a big hug good-bye today. It was very sweet.

Good Riddance!!!

Dr. Dray making ME a "hat"

Good riddance to valium is all I have to say. I have part of my boy back again. I say part because he still can't understand anything I say and he struggles with all of his heart to say anything, but he is happy! He is happy and focused again. We can read books again, do his speech therapy assignments (with out it being at all painful), he falls asleep easily, and he is smiling and laughing more. It is so great. Hopefully these things will stick around. I was going crazy trying to get him to do ANYTHING.

The steroids haven't really made much of a difference in his communication, but he is doing great in other areas again. We have really relied heavily on the signing for now, and everyday he picks up more signs. The school district sent me everything I need to get in-home services. I was trying to explain Dray's condition to them, and of course they have no idea what Landau-Kleffner is, nobody does. But, they are willing to do the in-home services, so that's all that matters. Hopefully we'll be able to hear Dray talk normal again soon. We hope and pray always!