Finally got Cope's walker in the process of being ordered. Should be officially ordered by the end of this week. They will give us a call when it arrives so that we arrange to have it brought to us, or so that we can go get it. I'm so excited! It has been a little bit of work (not nearly as much as the Constraint Induced Therapy was to get started, but still enough that it was slightly annoying.) He tried to use the rocking chair foot stool to stand yesterday and fell and hit his head on our coffee table. It left lump and pretty good bruise. I think if he has a way of walking without having to use those unstable avenues we'll be much better off. It should result in fewer accidents and bruises and hopefully in the end an independent little boy who will be much happier with his increase in mobility.
Cope is learning to sing Twinkle Twinkle little star. It is so cute! He sings "tinkle tinkle star! Are! upbadaor high! Sky! tinkle tinkle star! Are!" and he hums in between segments. So adorable! He is also counting. He says, "2, 3, GO!" We are working on 1. For a two year old I think he is doing pretty good.
Finally got a consult set up for Cope's walker. It is June 5th. I'm really hoping it all goes well because I don't think he will walk anytime soon without it, but I think he is ready to walk now. He will take several steps while holding my hand, and then sits down. He likes pulling himself up on stuff, but refuses to stand by himself. Hopefully using a walker will strengthen his legs enough that he will start walking and then soon after walk on his own. We'll see though.
So funny thing . . . I decided to try and see if he was ready for potty training as he is recognizing when he goes potty and he has started bringing me diapers. So I put him on the potty. He was scared to death of the potty and was afraid the whole time that he would fall off. He started crying and asking to get down, so I got him down. Never heard of a child being afraid of sitting on the potty. I've heard of being afraid of the toilet flushing, but not of the toilet itself. Kinda weird. So I guess step one of potty training is getting him to not fear the toilet. Any ideas?
Got his official diagnoses . . . well sort of. They are sending it in the mail. Basic jist is his eyes are very healthy and he doesn't need glasses and probably not surgery. They will do a check-up in six months just to be sure. If every thing looks fine then we'll just have normal yearly check-up's. He does have peripheral blindness in both eyes and this will make it very difficult to read. When we read, we read left to right, and so this means that it is usually the right peripheral that allows the mind to pick up, and read, the next word. Without it this will be complicated. Not impossible, but more difficult.
We got the official diagnoses letter from our Pediatric Neurorehabilitation Doctor. Cope has right spastic hemiplegic cereberal palsy secondary to left middle cereberal artery infarct. Wow, what a mouthful. Now we are just waiting on his diagnoses from the Pediatric Opthalmologist. That is May 8th. Should be interesting.
I was thinking about our journey with Cope so far and was thinking how hard this has all been and what we still have ahead. I think the hardest parts are the finding out. Finding out he had a stroke, finding out he will be behind most, finding out he is partially blind, and most recently finding out that it is highly likely he will never drive a car on a public road. Most states require that a person has a 120 field of vision in order to get a driver's license. If Cope has true right peripheral blindness that means that he will only have a 90 field of vision. I don't know when the field of vision test can be given, but on May 8th we have an eye appointment to get him officially diagnosed as visually impaired. We are going to ask about a field of vision test then. My therapist believes he probably does not have 120, meaning he will never be issued a driver's license. I know that is in the future, but when you have a child that takes longer then most kids to get to each point in life, you have to look ahead in order to try and help them reach those milestones, hopefully as close to other kids as possible.
As I think of the hard parts though, I can't leave out the wonderful parts. He is one of the happiest babies/kiddos I've ever known. I do believe those who are given extra struggles are given extra joy in their hearts as well so that they can deal with the struggles and challenges that lay ahead of them. I don't think he will mind not being able to see, he'll just deal with it and move on. He has taught us patients, endurance, and the ability to enjoy the little things. I get so excited when he grabs a toy with his right hand, or when he stands, or when he chooses to talk to me using words. With any other child those joys would have often been taken for granted. I'd already seen them with Kailey so it would have been nothing new. With him I don't take those for granted, because I was told he may never and he is!
Life is a beautiful thing and each child is so special and unique. His struggles have become mine and his joys are mine and those outnumber the hard!
Yesterday I walked in and Cope was standing all by himself. He had a grip on his train, but usually he will not stand without something to lean against (ie: couch, window seal, Mom or Dad). I was so excited.
We went and got Cope's AFO's (foot brace) yesterday. He will have three. One small one for each food, and then a bigger jointed one for his right foot. I really hope they help. He is getting so heavy!
I want him to walk soon! One positive is that he has felt like a baby longer then Kailey did.
So here are the Disneyland pictures of Cope. He loved it. The only thing he didn't like was that there was really only one spot I could let him down to crawl. He got a little tired of his stroller. He also hated getting off rides. Especially roller coasters and the Mickey's Fun Wheel.
Standing in line for our first ride.
Notice he's holding on with both hands! YEAH!
On Mickey's Fun Wheel. He loved it!
Waiting for the Parade. Cope got tired of waiting and really wanted down.
At the ocean. Cope loved "chasing" the waves with his Dad. He didn't care for the sand though.
On the Monorail. Cope dubbed it the "too too."
Trying to get away again. He thought he was so sneaky.
In Toontown. Cope loved how colorful everything was. It was nice because he was able to touch most everything. Here note that he is turning the wheel with his right hand!
In bug land. Cope liked this ride because we could all ride together.
With Todd on the bridge in Fantasyland.
Riding the Circus train.
Cope got a sticker from one of the Cast. Here he's showing Daddy.
On the Carousel again. I just love his smile.
Since I kinda left you all hanging, I thought I would update you on how the final days with therapy went, and where we are at now. First, therapy seemed to go better and better. The last day he seemed tired again and didn't want to do too much, but still made me excited by the future. He was trying to pull out his index finger on his right hand to point at things. It usually ended up being his ring finger instead. I was thrilled for the effort. You could see the concentration and effort on his face.
Now it is taking less effort to use that hand. We went to Disneyland this last week and he continued to use it. The fingers were used less and less, but he still used that hand to point (without the finger) to try and push objects, and to give "fives." Before we had to force him to use that hand, now if it is closer to the object he will make an effort with that hand first, before he switches to his left. It makes me so happy! So here is my take on the situation, Constraint Induced Therapy is extremely difficult. It takes a toll on both you and the child and anyone else involved. It takes time, effort, and strict focus just on the child getting it. The child will be more upset than usual through the whole two weeks. They will want more cuddling, more holding, and very little "down" time. They may not sleep very well or eat very well which will increase the probability of crankiness. That being said, it WILL make a difference. They will have more usage of their hand and they will be extremely happy and interactive once the therapy is finished. With Cope he is now even more talkative, more interactive, and he gets into things more then ever before. I believe strongly that because of Constraint Therapy he is now closer to being developmentally on track in all areas not just with his hand. I would highly recommend that those children who have one-sided hemiparesis recieve this therapy. It will help in the long term progress of the child in a way I think nothing else can.
Day Seven & Eight: Cope slept good the past two nights and finally seems back on schedule. The bummer part is he has been farely cranky today, so I'm not holding my breath for good sleep tonight. I have to get everything washed up and cleaned today, so that tomorrow we won't have as much to do. Friday we'll clean up and hopefully be able to leave as soon as we are done with therapy. I don't know how much I'll get done though, with how Cope is being. Took me awhile to write this. On the flipside, we had a great two sessions of therapy today and yesterday. He is doing so good. Although his use of his wrist isn't increasing as much as I had hoped, his awareness of that side and hand has definately increased dramatically. He occasionally opens it and will grasp things although he still hasn't been able to make his brain do both grasp and release in the same sitting. He either grasps and can't let go or is able to let go, but then can't grasp because his hand is too loose. Hopefully that will get better as time goes on. He was drawing a picture with his right hand today at therapy. They got out a dry erase board and put a marker in his hand. He was thrilled with himself and would have stayed there much longer just scribbling if they would have let him. When we got home I was holding him and he noticed the lightswitch. He turned it off all by himself, but then he couldn't get it back on so he said, "help me!" We sat there awhile. I would help him turn it on and then he would turn it off. After that I went to get the vacuum to vacuum our room, and he found the power button on the vacuum. I probably made everyone else crazy letting him turn the vacuum on and off, but he found it and did it all by himself without prompting and with his right hand so I wasn't about to take it away from him.
Day Six: Cope barely slept again last night. He's developed a cough. I think he has a sore throat cause everytime he would cough he would cry. I don't know if Ronald Mcdonald House or Therapy is the one that keeps getting him sick, but apparently he doesn't have a great immune system. Hopefully though he'll get everything, get over it, and then be fine. Hoping for good sleep tonight. Despite the bad sleep he did farely well at therapy. He stayed busy nearly the whole second session and the therapist was thrilled with how on task and how hard he worked. Although he didn't do anything drastically new, we've noticed two things 1) we are going to have to sling his arm because he is using his good side too much. He has adapted to the cast and is using it regardless, and 2) he is keeping his fingers more open now. We are working on grasping. Sometimes he can grab hold and can't let go, other times he can't make himself grasp and when we do put the object in his hand his fingers won't tighten enough so he will immediately drop it. I can tell how frustrated he gets from it all, but so much improvement!
Day Five: Therapy has little cars that the kids may ride in. They are foot powered, and have a door that opens and closes and a little steering wheel. Cope enjoys being pushed around in them. They push him around in figure eights to help his brain use both the right and left side. Usually they require that Cope hold on while they are doing this in order for him to also stretch and work his right hand/arm. He was in an especially frustrated mood as it was the last session after a 20 hour week so he was extremely tired. He wouldn't keep ahold of the wheel so instead of doing that the therapist, Christine, would do a figure eight and then wouldn't do another one until he had turned the wheel with his right hand by pushing it. He was doing it, but at one point instead of just pushing it, he opened his fingers and grabbed the steering wheel. He then proceeded to turn it back and forth! I was so thrilled! He has never intentionally opened his fingers like that! He couldn't get his hand to release after that, so he got frustrated when he couldn't get his hand off, but just getting it on was a definate improvement.
Day Four: Not much new to report today. Cope yelled at me. We were working on the trampoline. The therapist, Kara, had him on a ball and was stretching his hand while I jumped to give him movement.
One time I stopped to take a break and Cope yelled, "JUMP!" So I did. That's a new word. He learned another new word yesterday. His favorite toy right now is a "river" with fish that "swim" around in it while music plays. Pushing the frog will turn the toy on or off.
The therapist, Eileen, was singing the song that it plays. Something about fish swimming around a dam. She would stop singing when she turned the toy off. Everytime she turned it off she would have Cope turn it back on. At one point she turned it off and stopped singing. In the silence that followed Cope said, "Dam!" It was used correctly I'm sure, but still I hope that is not a word that remains in his ever growing vocabulary.
Day Four: Today was rough. Cope spent the night throwing up. I didn't want to let anyone know though because 1) I'm not suppose to have sick kids at Ronald Mcdonald House, but I'm not going to afford a hotel, 2) I worked so hard to get him into therapy I'm not going to quite now. So I snuck into the laundry room in the middle of the night and did laundry then, and at therapy I let them know he wasn't feeling well, but I left it at that. After just under three hours of sleep, we didn't do too bad at therapy. The first session he was a little slow and cranky, but he still did quite a bit of work. Between sessions I ran and got kids pepto, kids tums, and apple juice. We ran back and I gave him bread and apple juice for lunch and then put him down for a nap. The second session went fairly well. He still was slightly clingy and got tired easily, but he was more active and willing to participate. He is doing so much better at feeding himself with a spoon and his range of motion that he initiates himself has increased greatly. I even found him playing with a toy with his right hand even though I wasn't forcing him too. He still keeps it curled most of the time, and he still bends his wrist in what appears to be an awkward way, but we'll get to that. One day at a time. Hopefully the next few days he'll start feeling better and then be able to work a little harder. The harder he works the more progress he'll make.
Day Three: Therapy today was . . . interesting. Cope was quite cranky as he got to get his brace off last night and the morning without it made him really despise it more. It went really well as far as progress though. He is now using his hand (still very awkwardly, but any use is good) to push buttons and objects if encouraged. While we were there the therapist also pulled out her Ipad and let him draw with stars. Once he was tired of that she opened another application that was "The Wheels on the Bus." It required him to move his right hand up or down, to move people, or from side to side, to move the windshield wipers. He got the hang of it pretty quick. The best part is he can't make it work with his left hand because it doesn't pick up his brace. After a few times of hitting it with his left hand and it not doing anything he figured out that his right hand would work. I watched him move his right hand up and down side to side for a good half hour while he played! So happy!
The second session was slower. He was really sluggish and you could tell. He did do a few things worth reporting though. They had those fake vegetables that have velcro in the middle and a fake plastic knife that goes with them. Cope was able to "cut" them in half with his right hand. You could see the concentration and has arm would start to shake when he was pushing really hard. It was so good! They also had a foam dart launcher. In order to make the dart launch he would have to squeeze a ball. The ball was attached to a narrow tube that the dart was put on. The air inside the ball would be forced through the tube and then would cause the dart to fly. In order to reload he would have to poke the narrow tube back into another dart. He was able to at very least move the tube toward the dart, often getting very close to getting the dart on himself, and then he was able to begin to squeeze. I watched him close his finger tighter around the ball in an attempt to squeeze it tight enough. He isn't strong enough yet but he got the concept! I was so excited.
The final thing he did wasn't even at therapy but I was thrilled! He blew me a kiss with his right hand! It was later in the evening, and he used the back of his hand, but a kiss is a kiss! :) He is progressing so well! I am thrilled.
Day one: Didn’t include any therapy. I put the constraint on early Sunday morning and started with breakfast. Cope was so mad he refused to eat and he cried off and on until we got in the car to go to church. Without having eaten much food, I was worried he would be extremely difficult at church. He wasn’t too bad and finally let me help him eat some cereal out of a bag that I brought with us. I’ve put on his constraint brace often since we got it, but I always took it off to allow him to eat. During these two weeks it won’t be coming off. I think he was used to me taking it off to eat, so I think he hoped that if he complained enough, I would just take it off.
After church we headed to Albuquerque because I was worried about how the roads would be at night or early in the morning. During the afternoon they were perfect. We got to the Ronald Mcdonald house at about 3:30 and then got everything unpacked and settled before supper.
At supper Cope finally decided that the constraint wasn’t coming off, along with the fact that he was probably extremely hungry, so he ate very well. He was even able to get a few beans and a few chunks of bread into his mouth without my help. He still likes to turn his hand/wrist in, but even using it at all is an improvement so I’m thrilled. I can’t wait to begin therapy and find out what happens from there.
Day Two: The day started at 6:30. I got in the shower and Kailey got dressed. We had us all dressed including Cope's constraint back on by 7:30 and then got the room cleaned and were out the door and eating breakfast by 8. At 8:40 we left to get to therapy by 9 am.
Cope worked hard in therapy. He started out frustrated, but after the therapist took them into their "big gym" he started smiling. The big gym consisted of all sorts of swings, hammocks, etc. hanging from the ceiling. Cope relaxed in a swing and then the real work began. Once he was comfortable they started working on range of motion and weight bearing. After two hours of working we went back to Ronald Mcdonald House. We got back at 11:20 ish and then ate lunch. By 11:50 the kids were in the room. Neither one took a nap and so then leaving again at 12:40 for the next session of therapy was difficult for them both.
Kailey actually had the most struggle. She is starting to understand just what I meant by "lots of therapy for the next little while." Although she likes the "big gym" as much as Cope does she doesn't like the lack of attention she gets because Cope is getting it all.
Cope did relatively well considering. He did weight bearing into the open palm of his right hand for 30 seconds without help. He also beeped the horn on a car they have, all by himself several times. I almost cried watching him. No nap, new environment, lack of brain cells, and still he was determined to do it himself. I'm so proud of my little boy already.
We got back to Ronald Mcdonald at about 3:30 and now have down time. Cope fell asleep on the way, but I had to wake him up as he really needs to eat dinner so that he can sleep well tonight. The fun begins again in the morning.
Got Cope's shoes! They are super cute! I love them! They unfortunately were too small. The right length, but his little foot is just too fat. Madison said they would make us another pair and that we could keep this one. That is awesome, but I feel terrible that she put so much work and effort, and they don't fit. Peach's Neet Feet do an awesome job with their shoes. http://peachsneetfeet.blogspot.com/
Any time or money donated to their cause would be awesome!
The most amazing thing happened today! I was doing therapy with Cope. I work with him for an hour on Monday and Tuesday. We have Occupational therapy with our therapist, Lou Anne on Wednesday and Thursday, and on Friday our Physical therapist, Debbie, works with us. So on Monday and Tuesday, I spend an hour doing therapy at home. The first part of the hour is spent using the massager to massage Cope's arm in order to innitiate the Souques' Phenomenon, "a phenomenon seen in hemiparesis, consisting of involuntary extension and separation of the fingers when the arm is raised (http://www.open-resource-project.org/homeopathswithoutborders/index.php?option=com_content&view=article&catid=79%3Aconcepts-ss&id=310632&Itemid=54)."
After that we massage and stretch his leg until he is too mad to do it anymore. Once I'm done with that I pull out toys and I stretch his arm or leg while he plays. We were playing with his pop-up toy.
The yellow Panda button is his favorite because it is the easiest to push, but he'll also push the blue monkey quite often. He is adept at all of the with his left, unaffected hand, but his right, affected hand he never uses to play.
I had the toy sitting on the couch with him standing next to the couch. I put a piece of candy on the arm of the couch to his left. He couldn't quite reach it so he asked me for it. "eee. Numnum. EEE." So I picked up his right hand and laid it on the pink button and told him, "You want the candy? Then push the button." and I pointed at the yellow button. He brought his arm up and put his hand on the yellow button. Then he scraped his hand down until his palm was touching it and his fingers were partially open and pushed the button. The panda popped open. I was/am so thrilled!! This is the first time I've seen him intentially use his hand like that! The little steps are what count to me and that was a leap in the right direction.
Cope loved Christmas this year. He is talking more and more and was able to tell us what he wanted and what he didn't, quite well. We spent the 23rd with Grandma Lisa Mortensen and he got a remote control car. He has figured out that if he pushes the button it goes. He likes it better though if Kailey or Daddy push the button so he can chase it. I think they like it better that way too.
On Christmas Kailey woke him up early, but he didn't get to get out of bed until Mommy came in. I got them both dressed and we stayed in Cope's room until Church. Church was from 9-10 and Cope was already tired and slightly cranky by that point. He didn't want to be held and had a difficult time sitting still.
Once we got home though and he saw the presents, his mood got remarkably better. The first presents we opened were the ones from Uncle Craig and Aunt Nikki. It was shipped all the way from Germany.
No matter what else we opened he kept coming back to that. It is definately his favorite inside toy now. It is a music box with magnets in it. The two guys/clowns on top spin in circles as the music plays. He gets mad when the music stops or we put it away.
He also got a another car, and a pop up toy. The car goes when you shake a rattle or play with the top of it, and the pop up toy is one with buttons/knobs/etc. and you push the botton, turn the knob, etc., and the corresponding object (ie: lion, tiger, elephant) pops up. Hopefully the others will be fun eventually . . . but right now he prefers the toy from Craig and Nikki.
The newest thing this week is "pretty" although it sounds like a high pitched "itty!" We went last Monday and got donuts and looked at Christmas lights for Family Home Evening. I kept saying "Look, see the pretty lights?" Now lights, bows, and anything shiny are "itty!"
Cope said "Cup please" today! He said it all by himself without prompting. I ran and got his cup and got it to him really fast all the while praising him for "using his words." It sounded like "cuck kee," it was so cute! The hardest thing has been knowing when he wants food or drink and if he can ask for his cup then that won't be a problem anymore. I'm so excited! My baby is getting so big!
Cope is trying out new words every day. Yesterday at speech therapy he even decided to say "Clock!" We were really excited because the "cl" combination is hard. Up to this point he has said "cock" for clock. As he gets more descriptive he also gets more frustrated with those things that I don't understand. He says "that" for "what is that" and "I want that" so figuring out which it is can be confusing. That's okay though because we are both figuring it out. He is doing a good job of training his mommy on what he means. It is fun to watch him ask Kailey what "that" is and watch them interact. He loves his sister so much.
Cope is my baby. He was born 5 weeks early and had a stroke a day after he was born. It killed much of the left side of his brain. Brains are wired to work opposite, so he struggles everyday to make the right side of his body work. Right now he is working on crawling on all fours rather then just army crawling. He is also working on trying to walk, but still isn't to the walking quite yet. We'll be super excited when that step comes. He is so social and loves to talk, but only knows words like num-num for anything he eats, drinks, or uses to eat or drink. He also says mommy, daddy, and a few other basic words. I was so excited when he said "Sissy" the other day when calling for Kailey. Most animals are moo cows or Katka. Katka is the name of our little Shetland Sheepdog. He is starting to be a tad shy and will cuddle into my shoulder anytime someone he doesn't know talks to him directly. It is so cute! I'll update this page anytime he does something new.