The Christmas season is officially here! To get things kicked off, a friend and I decided to do some midnight shopping on Black Friday. Not too bad! I don't mind going if I'm already up, but I don't like getting up early to do anything, and that includes shopping. So, thanks to Old Navy, we headed out. We only stood in line for about 10 minutes to get into the store, BUT we stood in line for an hour to check out! It was worth it though. Got a few pair of PJ bottoms for 5 bucks, along with some tees. Also got some jeans for $15. Curtis and I have both lost some weight (he's lost 27lbs so far!!!!) so we cleaned out the closet the other day. We got rid of TONS of stuff. Now it's time to fill it back up! After that, we headed to The Children's Place, Target, and Kohl's. We got back home around 5:30. All the shopping definitely got me in the spirit.
Last night, we bundled up and headed downtown for the Parade of Lights with some friends. It's the first parade that Wade has been to, and he was in awe. He loved the music and all of the lights.
Now, I need to get the house cleaned up so we can decorate. Hopefully we can get it all set up tomorrow after church before Curtis goes to work. I love the holidays!
While I'm at a loss for words at what happened tonight, it seems as if Wade has found his!!!
Wade got sick in the middle of the night last night, so needless to say, he was pretty drained today. (Not to mention we were out and about shopping, eating, etc. for 12 hours yesterday without a nap!) This afternoon, he took a long nap into the evening, so after bath, instead of going right to bed, I wanted to test something on the iPad. I wanted to see if he could spell simple names--mom, dad, Wade--since he knows his alphabet and letter sounds. Typically, he's up for anything on the iPad, but I couldn't coax him to use the proloquo app (communication app). So, we went to his new favorite app, Starfall. On the letter "G", when you press the button, it says "Green means go." I repeated it after the device, and Wade looked at me and selected the sentence again with his head. So, of course it repeated the sentence, and once again, I read the sentence. Then Wade did it, and I did it. Over and over until he got a little chuckle. I could almost see the light bulb go off like he was thinking, "I can say the same thing Mom says!" It was pretty cute.
Since he had his moment of fun, I tried to go back to proloquo. I went to the keyboard and got him to spell W-a. I asked him what letter was next, and I saw him look over at the letter "d" but then he tried to select "b". (a, b, c, d were the four bottom choices on proloquo app keyboard) I tried to redirect him, but he kept going back to "b". I then realized he was shooting for the bottom part of the square which was right above the "home" button. (Most of the time Wade is pretty accurate with his head, but I moved from 6 choices to 8 tonight which made the squares smaller, plus he wasn't feeling well.) I said, "Oh, you want something else?" He looked up at me and again tried to get the home button. I ended up touching it for him, but he took it from there. He then selected the button that says "quick sets" (the area that I've programmed some stuff for him); then selected the button that says "bedtime"; then selected the button that says "bed". (Mind you, there are other choices on the screen that he has to navigate through/choose from.) I was shocked!!!! Up until now, I've gotten us to a particular page of choices we've needed, then he makes a selection. So, he's been paying very close attention to how I get in and out of different areas and where I'm placing certain choices! I said, "You want to go to bed?" He just looked up at me with the most pitiful face. So, off to bed we went without a single cry of resistance. My sweet, tired, sick little boy just navigated the proloquo communication app on his own, switching between multiple screens. What an awesome accomplishment!
***I just realized when I posted this that it is 1:00AM. Just so I can keep things straight, this event happened Sunday evening:-)
This post is a long time coming, but I've finally been able to capture some good footage on video! At this time I won't go into the pros and cons of different communication devices--I definitely have my opinions!--but instead focus on what is working for us right now.
Our family anxiously awaited the debut of the Apple iPad. Not just because we are MAC groupies, but because we knew that it would eventually be a voice for Wade. I had previously learned of the Proloquo2go app from a friend at work, but I didn't think it was feasible for Wade on the iPhone. I did know it would be our first purchase once the iPad arrived.
Curtis ordered the iPad online, and quite honestly, once we received it and introduced it to Wade, we just kind of played with it. It was the end of the school year, and things were very hectic. I really couldn't get a grasp on the best positioning for Wade to use it, and I was a little unsure as to how he would use it since he's quite limited motorically with his hands. So, instead of focusing on communication, we just let Wade play with it to get used to the device. His favorite two apps in the very beginning were Fish School and The ABC Book by Dr. Seuss.
Wade and I traveled to VA in June where we stayed for most of the month. Wade was having a bit of trouble with the screen "rolling" under his hands on the proloquo app. So, when he would try to make a choice, he would move his hand, the screen would scroll, and he would loose his choice. (FYI--our ST contacted proloquo and they said that they are planning a feature to "lock" the scroll function on the next update. Hope this happens!) So, I got crafty and made a key guard out of some craft foam. This little edge helped keep his had from sliding across the screen. However, the bigger problem seemed to be his spasticity, especially when he was REALLY trying.
One afternoon I was sitting on the floor with Wade in my lap. I had the iPad resting on his legs as I tried to manipulate his arms and hands. At one point I was talking to my mom and not really paying attention. The next thing I knew, the device "spoke". I looked down and watched as Wade was activating the iPad with his head! I was absolutely amazed and so thrilled that he overcame this obstacle on his own! His head has always been his favored modality. He has a lot of control of it, and has learned to a lot with it--turns pages of books with his nose and even uses his lips and mouth to try to accomplish things.
As the summer progressed, I really didn't concentrate on using the iPad for communication. We played with it a lot, and Wade really got the hang of it. During speech therapy, his therapist would use it for sequencing stories and making choices, etc. At speech he actually used it for work/communication but at home he just wanted to play. (He was actually so into it that some awesome therapists at Cook's decided to find a way to get one of their own!) It got to the point that we would have to hide it because if he saw it he would scream. I couldn't give it to him for just a bit and take it away to do something else or he would scream. Well, actually I could've, but at the time it wasn't a battle I wanted to fight so I just didn't give it to him.
As the months have passed, Wade and I have both gotten a better grasp on the "communication" and learning side of the iPad. I can now present it to Wade for him to make choices and then put it to the side without him freaking out! He's finally making the association that this little device is his voice. I am one happy mama:-) We've always known that Wade is a smartie, but he just didn't have the means to express his knowledge. When we were visiting the neurologist the other week, we were working on his numbers while the loopy medicine was taking effect for Botox. He's one smart cookie, and he's so proud of himself!
Besides identifying his numbers, Wade can identify all 26 upper and lower case letters of the alphabet. Just tonight he told me how old he is, and he also told me what letter his name starts with as well as Mom, Dad, Jordan, Grandpa and Nonnie. The kid is smarter than I give him credit for:-) Of course I've always known in my heart that his cognition wasn't an issue, but to actually see and witness that it's not, is just beyond words!
The past couple of weeks have been emotionally tough. I am part of an online message board with a group of close knit mamas. The women there are priceless. And although a lot of us have never met, (I've personally met a few of the girls) their friendship and support is amazing. This group of women have their share of ups and downs, but the week before last, one of our own lost her 3 month old baby to bacterial meningitis.
As a tribute to Charlie, a lot of us dressed in purple and/or red (what the mom wore to the funeral) or bright colors and posted the pictures online. The funeral was a celebration of baby Charlie's life. The song that the family walked out to was "Somewhere Over the Rainbow" sung by Israel Kamakawiwo'ole. It is a beautiful version of this already great song.
To show our love for Charlie and the family, I had Wade draw a picture of a rainbow using those Bingo daubers. He did an AMAZING job! He put so much effort into the picture. He even held the dauber correctly in his right hand using a fantastic grip. All I had to do was guide his hand and gently press on his wrist to get him to make the dot. Then, he held the marker with good positioning to write his and Charlie's name. I was a little nervous that the recent Botox would prevent such a good grip this early on, but it didn't.
Wade has been making such amazing strides lately. While I was hesitant at first to send him, I give a lot of credit to his wonderful school and his even more wonderful teachers and therapists. They are really working with him, and the effort shows! We are so, so lucky to be surrounded by some amazing professionals. Between the staff at The Hafley Development Center and the doctors and therapists in the Cook Children's Network.
Last Thursday, Wade went in for his fourth round of Botox. I can't believe we've done it so often! Wade is such a trooper during the shots. He cries a little, but overall he does really well. We don't really know how badly it hurts. I think it's different for everyone. I read where some kids say it's painful and others say it's not so bad. Either way though, Wade gets a lot of shots each time, so at the very least, it's not pleasant.
*All of the pictures below are from last fall--Wade's second round of Botox.
I'm really not holding his head down very hard. I'm singing "Wheels On the Bus" too. Not sure which he thinks is worse--the needle or my singing!
The purpose of Botox is to help relax some of Wade's muscles; to reduce his tone, or tightness. The very first time, we saw pretty instant results. In the bathtub that very night, Wade's hands were fully open. He typically kept them fisted. I thought at first he was just still really relaxed from the loopy medicine he was given before the Botox. (Wade does not receive any anesthesia. They just give him some medicine to make him feel good--kind of like he's drunk. He still feels everything, but hopefully he won't remember the pain so he won't resist the shots in the future.) But the next morning, his hands were still really relaxed. I was impressed! Doc still doesn't believe we had results that quickly, even though we're not the only ones to report such quick and awesome results. I had to take pictures in to prove it to him:-) He seems to think it might be some kind of effect similar to acupuncture. I really don't care what it is. I'm just thrilled it works so quickly!
The loopy meds taking effect!
Thumb tucked in the office before Botox.
Results--the very next day. I can easily move his finger. Before, I would have to pry his hand open.
Hand open on its own in a relaxed position.
As time passes, everyone--therapists, doctors, teachers, etc.--assesses and talks about how we think the Botox is working and how it is affecting Wade's movement. One time--I think it was the second round--we injected a muscle in his shoulder area. We were attempting to encourage the muscles in his shoulder to help Wade reach forward--out in front of him--instead of out to the side, then around to the front. Well, the outcome was something similar to the little boy in the red snow suit in the movie "A Christmas Story"; where he is so bundled up he can't keep his arms down by his side. Wade's arms kinda stayed out to his side and they would kinda fly up when we tried to put them down. It made walking down the shoe aisle at Kohl's a little difficult:-) Wade was knocking all the boxes around on the shelves on each side of him. So needless to say, that is an area that we chose not to Botox the next go round. Apparently, Wade uses his tone in a positive way to keep his arms down. We've also come to the conclusion that Wade uses his tone to help him grip things with his hands as well. So sometimes the decisions on what to treat aren't that cut and dry. For instance, Wade tucks both of his thumbs pretty badly. The left one is always tucked because we didn't treat it last spring. The right one tucks on occasion. On Thursday, we weren't really sure what to do about the right thumb. Curtis and I were both afraid that if we didn't do anything, we'd be in the same position we were with the left thumb previously. But then we were afraid if we did treat it, he would loose the function for some of his fine motor skills because it would make his muscles too loose. We discussed with the doctor and compromised by going with a lower dosage. His grip is a little weaker, but I'm thinking it will be okay. We'll see what his OT says on Thursday.
Results from the Botox typically last about 2-4 months. We make appointments to get the injections every 6 months. Reason being is that the schedule for Botox is VERY full. We LOVE our neurologist, but apparently, so does everyone else:-) He is awesome at what he does, and he makes us feel so at ease. He actually really includes us in the decision making process. He is so intelligent but doesn't have that "God complex" that some doctors get. I have a feeling his wonderful nurse would knock him down a notch if he did! We know who really runs the show:-)
So right now, things are looking good! All the therapy, equipment, orthotic devices, and medication (Artane), in conjunction with the Botox, are yielding very good results. Wade's future is looking bright!
I am a former special education teacher turned stay at home mom. Over the past year and a half, I've quickly learned that this is one of the hardest--but most rewarding--jobs I've ever had. Due to a traumatic birth, Wade now lives life with a diagnosis of Cerebral Palsy. Although our life presents us with different challenges than we anticipated, I wouldn't change it for anything. This blog is a documented journey of our experiences down this rocky road that seems to have many forks. The paths we choose when we come to those forks sometimes seem to be the less traveled routes, but we take them anyway in hopes that it will make a difference in Wade's life, as well as the lives of others. Please join us and share your thoughts.
