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!
Believe it or not, I've finally gotten around to posting some videos of Wade in his wheelchair. I have a bad habit of putting off things I think will take a lot of time. But really, how long does it take to upload some videos to YouTube and then post here??? So, without further ado, here we go!
This first clip is of Wade at therapy, the day he received his chair. He was a little apprehensive, but he hadn't sat in one in 6 months. Yes my friends, that's how long it took for insurance to process his chair!!!
This next clip is of Wade showing off his new skills to our friends. We are so lucky to have such a wide street that is not at all busy for him to practice. Because, it seems like A LOT of practicing is in our future!
This last clip is a little long, so feel free to do some fast forwarding! I would edit it a bit, but since it's taken me so long to even get these posted, I think I'll save that for another day!
Wade got his chair the last week of August. When we first tried it in the clinic, we had the head sensors set to just turn right and go forward. Once we got the chair home, being the anxious parents that we are, we decided to give Wade the ability to go left, right, and forward. We quickly learned that with these options, Wade's favorite thing to do was to spin in circles! Also, even though we live on a wide street, Wade always seemed to find the curb! Thank goodness for the remote stop that we hold onto for emergency situations. After talking to our wonderful therapists, we realized that all the directions were just too overwhelming to start out with. So now, the only option he has is forward. Once he learns to stop and go on demand, we'll add right and left back.
It's now been about 2 months, and he seems to be getting the hang of it. We take it to school everyday, so he has a lot of opportunity to use it. I can't wait until he is a lot more proficient with his chair. It's going to give him so much freedom!
New teacher, or therapist, or doctor? Is that you?
Oh hello…
I just wanted to chat with you a second. To caution you. Or warn you.
Please, tread carefully.
You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?
The slightly broken, definitely bruised one?
Yeah, that’s my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…
You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….
You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.
Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.
As you can tell by the dates on these blogs, I'm really not doing very well at recording events. A lot has happened in the past month. I have a running dialog in my head of what I want to write about, but those thoughts never seem to make it to this blog. Quite frankly, my life is just a disorganized mess!
However, I do have hope!!! About two weeks ago I went to the doctor and was prescribed medicine for ADD. My world inside my head has completely changed! I have so much more focus, clarity and motivation. I can see the light at the end of the tunnel instead of completely shutting down because the tunnel seems too dark. I've taken one nap in the past two weeks! It's amazing because sleep is my favored mode of escape and denial.
Unfortunately, medicine is not the cure all. The medicine has given me clarity and a sense of positivity, but now I have to teach myself how to gain control and organize my life. Just because I'm feeling better doesn't mean I automatically know how to do this. I am so used to living in a state a chaos, that this is new territory for me. I LOVE the thought of being organized, but I just can't manage to get there. Hopefully I'm beginning to walk down a new path that will finally bring a sense of calm to our household. I recently purchased two books: Unclutter Your Life in One Week and ADD Friendly Ways to Organize Your Life.
So, my goal for this weekend is to start reading the books. And with any luck, I'll get at least one post up about Wade's new wheelchair!
I have been dreading the first day of school all summer. Actually, I think I've been dreading this day since Wade was born, knowing that with a disability he would be starting school at the young age of 3. But, my fears were totally in vain, and I even had to eat some words on the second day of school! When we met in May for Wade's ARD/IEP, I decided that he would only attend PPCD 3 out of 5 days. Yes, I was totally keeping my son in a bubble because of MY fears! On Tuesday morning I had to surrender my fears and tell Wade's teacher that he will be attending school four days instead of three. (She had been trying to convince me to send him all five days, and she won!) The only reason he's not going that fifth day is because he has OT/PT on Thursday mornings and speech Thursday afternoons. She was thrilled and even said, "See Wade. I told you she'd change her mind!"
So, needless to say, Wade is completely happy at school. I think it's a wonderful environment, and I feel completely comfortable leaving him there. I was amazed on Monday when we walked by the principal and she said, "Hi Wade." We have not seen this lady since May. I think he is going to make tremendous strides!
First Day of School picture
Riding to school
Saying hi to the teacher
Playing with blocks
Checking out his new friends
All in all, this has been a very positive experience. Wade was worn out on Monday and took a three hour nap. I had to wake him to go to speech. Tuesday he did well also. This morning, I think the busy week is starting to catch up to him. He was very cranky and cried when we got into the classroom. I anticipate a long nap this afternoon!
Besides me getting used to being a stay at home mom, things have been pretty uneventful around here. Which is a good thing! So, just a few highlights from the past couple of weeks.
A few weeks ago, Jocalyn from Kendall's Hope Blog, sent me request to become a fan of 3E Love on Facebook. I immediately fell in love with the wheelchair heart symbol Stevie is promoting on his page to: "Embrace diversity. Educate your community. Empower each other. Love life." I told Curtis that if I were to ever get a tattoo, that's what I'd get. Little did I know that I would soon be at the tattoo parlor getting my very first tattoo at age 36! That was on 8/8/10. The next Sunday, 8/15/10, Curtis went back and got his tattoo. We got them in honor of Wade getting his very first wheelchair. It's amazing how powerful a symbol can be. In fact, Curtis said it best in a FB post to Stevie: "It's amazing how a symbol can help you embrace something. Our son has CP and is getting a wheelchair, we purchased his first van this week. It was a hard pill to swallow but on the other hand very exciting. Soon he will have freedom beyond his mind. This symbol has really helped me to embrace things and I was proud to get the tattoo to celebrate the beginning of a new chapter for us... It's helped me cope with things and instead of dreading the challenges I embrace them now I am forever thankful. And honored to have this symbol." So, thank you to Jocalyn for sharing this page, and thank you to Stevie and his sister for spreading the love! My tattoo Curtis' tattoo
Last Saturday, after much research and discussion, we finally purchased our new van. At one point, it was between a Chrysler, Honda, and Toyota. The Chrysler had the most options, the Honda had the best third row seating, and the Toyota drove the best. However, the Honda was a close second as far as driving the best. The Chrysler was just too heavy. We decided to go with the Honda, then when we got to the van shop, I decided to look into the Toyota again. They didn't have one on the lot, but could get one from Mesquite. It fit the bill and was a little cheaper than the Honda, so we decided to go with it! I'm absolutely thrilled with our decision, and I have absolutely no buyer's remorse--which is really good for me! Even though we don't have the wheelchair yet, this van has already made things so much easier! I can stand in the van and easily move from the front to the back when needed. I don't have many pictures yet, but when we get the wheelchair next Thursday, I'll get some shots. Wade rolling into the van soon after we bought it!
In honor of Wade starting PPCD, his aunt Jordan sent him a new back pack and a few things to go inside.
Included with the back pack was a supply box, pencil, box of crayons and first day of school note. Typical stuff. I texted her and questioned her about the action figures and fishing lure. Her response, "Jenny. Every kid takes toys in their back pack. And the fishing lure is for show and tell." Well of course! What was I thinking??? Wade is so lucky to have such an awesome aunt who loves him so much!
I still can't believe Wade is starting school on Monday!!! Tomorrow evening is "Meet the Teacher." Stay tuned for a full report about the first day!
We had a pretty eventful week in the Jordan household. Last Monday we were honored to be invited to the Grapevine Elks Lodge. Wade's speech therapist at Cook Children's has worked so hard to get funding in order to purchase some iPads for the clinic. The Elks Lodge came through with flying colors, and now Wade and other kiddos have access to the iPad and the communication app, proloquo2go, during therapy. Wade's super speech therapist invited us to go with her and another therapist to the Elks Lodge to express our appreciation for their generosity. Wade was a huge inspiration for Sandra to work so hard to get the iPads. We are so thankful that we have such a wonderful group of therapists at Cook's. We expressed our interest in the iPad, and Sandra took it and ran! It's so helpful that she knows how the iPad works so that we can use ours at home and follow up in therapy. We're able to bounce ideas off of each other and figure out what works best for Wade.
Wade was able to tell the Elk members Monday night "thank you" with his iPad. I heard a woman across the room say, "He's using his head!" I am so thankful that Wade was/is able to show others how innovative people with disabilities can be. Since he can't use his hands well, he uses his favorite modality--his head and mouth!
On Wednesday night, Wade decided he needed to get up at about 2:00AM and stay up until about 4:30AM. Unfortunately, Thursday morning was therapy morning, so I had to wake him up and head off to therapy. Surprisingly, he did really well. Afterward, I couldn't handle the thought of going home and listening to his crankiness that I was sure was going to follow, so we opted to meet some friends at the Fort Worth Zoo. This was Wade's first trip to the zoo, and I think he really enjoyed himself. When we approached an animal he really seemed to like, he would start kicking his legs and smile. We were only there for a couple of hours, but I ended up getting a zoo membership so we can go back anytime.
Friday, we headed out to get Wade a big boy bed!!! I have been mulling it over in my mind for quite a few months, but we just kept putting it off for one reason or another. We opted for a daybed so that it is closed in on three sides. Then, I picked up a bed rail from Babies R Us to attach to the open side. I think it's going to work out really well. Curtis and I put it together Friday night, and the new mattress was delivered on Saturday. Saturday night when I took Wade into his room to show him, his eyes lit up and he grinned so big. When I laid him down on his back, he just giggled and giggled. I took that as a sign that he loved it.
A little bit later our neighbors came over to check it out. Wade's friend Mallie climbed up with him and they had a great time cuddling and laughing together.
On Sunday after church, the same neighbors came over for hamburgers and pool time. Wade and Mallie had a great time splashing around. Later on, after naps, Wade and I headed to their house. This is where I witnessed Wade learning how to play pretend! Mallie was serving us all "tea", and we all pretended to drink. When she held the cup up to Wade's mouth, he shook his head "no" and closed his mouth. We just kept talking about how we were drinking our pretend tea and how good it was. "Yum, yum," I would say. Before too long, Wade was opening his mouth and "drinking" from the cup. It was soooo cute! Of course I didn't have my camera!
All in all, it was a pretty fabulous week. But the real beauty in all of these events is the wonderful people we have in our lives. We are so truly blessed to be working with some of the best therapists around. They all encourage Wade and teach him to overcome his obstacles. And I am so truly thankful that I have friends that include us on outings and play dates. To be honest, sometimes it is difficult to see these kids a little younger than Wade playing and talking. But then I see the smile on his face and glimmer in his eyes and thank God that we have such a network of supportive friends. It makes my heart smile when I hear the other kiddos calling his name and see them get so excited when they see him. These children do not yet know about disabilities and discrimination. Their innocence is beautiful and gives me such hope for the future.
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.
