Many people have asked, What DO you do with Dillon? I thought I would give you a small look into our daily schedule with Dillon. I will try to explain what and why we do each thing. There are several video links, they are all short. Please take the time to watch them if you are interested in what it is we are doing all day every day.
Please note: I am trying to explain things as I remember being taught almost a year ago. If you have a brain injured child and want to know more information please contact The Institutes for the Achievement of Human Potential. Everything we have learned has come from them, they would be able to tell you what you need to do to learn more about these different things. Please do not try to do any thing you see here without learning from the Institutes first. Thank you!
First things first! This is a picture of Dillon's daily schedule before we start in the morning:
This is the schedule after we are done! I will explain each thing below. The smile faces are our key: :-( means he didn't do it :-l means he sorta maybe did it, :-) means his did it, :-D means he did a GREAT job at it! (Real technical I know - but Nurse Robin came up with it! heehee)
"Date" Need I say more? :-D
"Day" We record the day of the week as well as how many days we have done the program. We have completed day 233 on Friday!
"Light" as seen at the top as the first and last cell of the grid. This is light reflex. We stimulate Dillon's light reflex by shining a light in each eye about 5 or 6 times. We say "Light" as we do it. We are looking for Dillon's eyes to constrict fully, as soon as the light hits the pupil. When we started this a year ago, his eyes would more often than not stay as they were or only change by a little bit. Now they almost always have a full reaction. If he is sick or tired they may not. This is the first step in being able to see.
"Balance" This is a very interesting technique! The idea is to lay Dillon on a mattress and let him pretend to be rolling down a hill. We started by only doing one flip (which is actually a half roll...from belly to back or back to belly.) we are now doing 2 flips at a time. One of us will lift the edge of the mattress up as the other one holds his arms over his head so he doesn't get stuck on his arms. Sometimes it doesn't go as smooth as we would like, but we are working on learning how to best do this. Dillon seems to like this a lot! At first he seemed a little scared - who wouldn't be?! - but now it seems like he is excited when he knows what we are about to do. His eyes will get big and there is just a sense of joy with him. After he flips his eyes are very big and sometimes his arms or legs go up in the air. This is working all the dimensions of the inner ear, where our balance is decided. Since we aren't touching him, Dillon is learning his own balance in stead of learning to use my balance. Dillon has no clue what is up, down and side ways. This will help him learn this, which should help him to hold his head up. Why lift your head if you think it is just floating in space and don't understand that you are lifting it up? I think he likes it! He "flips" 4 different directions, 6 times a day.
"Grasp" I am sure many of you who are parents have seen how "strong" your newborn is. If you put your finger in their tiny hands they can hold on so tight that you can lift them off the ground. This is do to their grasp reflex. When something is put in a baby's hand they hold on, they later will learn who to let go. When we started this, Dillon had no grasp reflex. He just wouldn't hold on to anything. We can now get him to hold a lot, and sometime all, of his weight in his hands. We count down as he is holding so he will know how much longer he needs to hold for. We are at 4-3-2-1 right now, next week we are going to try 5-4-3-2-1. We try the grasp 2-3 times each time, and we do this 6 times a day.
"Ramp" The proper name is Inclined floor, but ramp is much shorter. This is where we put Dillon on an inclined floor so that every little movement of an arm, leg, finger, or toe will move him forward. Dillon has learned a lie: There is no reason to move my limbs. We need to teach him there is a reason! As he starts to move more and more on the ramp we will slowly start to lower it until he is able to move on his belly on a flat surface (called "crawling"). I already posted a video of what we want Dillon to do on the incline floor, but this video is what is more typical of Dillon on the floor. Would you pray we will see him moving more? Dillon is on the inclined floor up to two minutes each time at least 6 times a day.
To see a video of the this click here.
"Stand" This is normally done in one of two ways. One being the video I already posted where Dillon was under the ladder holding on while standing. But the more common way we do this is to have him sit in front of me, I pull his feet back to a normal position for standing and then try to hold them flat with my feet. We then put the rod in his hands and try to get him to stand in a proper way. Sit down in a chair and pay attention to how you stand. Now sit back down and pretend you are 9 months pregnant when you go to stand. Dillon naturally wants to stand in the pregnant way, but we want him to stand right. We then have to watch his feet the whole time because they will twist and turn all sorts of ways that is not good at all. His pelvis is push forward so hard it takes all my strength to keep it in positioned right. He pushes his head back extremely hard. I often have to use my head to keep his head up since my hands are so busy with the rest of him. I will tell you, him standing gives him a work out - but it is also a workout for me! We normally do this when we are doing grasp, and we do this 6 times a day.
To see this done click here.
"Pictures" We bought black and white cards and some colored cards from the Institutes that have the word clearly written on the back. These are what we show Dillon every day. We choose 3 cards and show him only those three all day. The next day we get three different ones. We hold it about 12-16 inches from him and always use a lot of light. We tell him what it is he is "looking" at ("Cat, Dillon, this is a cat.") and give him about 30 seconds to find the card. Then we will turn it over and show him the word and tell him "This is what we call cat" A lot of times Dillon does not pay any attention to us, but sometimes we can see his eyes sifting back and forth over the picture/word. We don't know what he is able to see, but we have to keep giving him opportunity to try.
To see a video of this being don click here.
"Auditory" This is where we stimulate Dillon's startle reflex at random times during the day. We bang the boards together up to 10 times in a row and look for any sort of response. Anything from his eyes moving, blinking, fingers moving, coughing, etc. Anything that we think could be a reaction to hearing we stop and record that number. For instance we might see it at 4 so we write 4, if there is no reaction we write 10. More often than not he has 10s. We have to find out what else we can do to try to stimulate this startle reflex.
"Patterns" This is what we need three people for. All of you have seen me say I need help! I need three people! Nurse Barb and I have been doing the patterns since March and saw no progress in Dillon. We finally have three people for the last month and have seen a lot of progress! The idea is that we are teaching Dillon's brain what it FEELS like to crawl. You can only learn things through your senses so we have to teach him what it feels like. We rub his arm and leg on the table as we take them down - just he would be doing on his own. We do a homolateral pattern with him as this is the first neurological way to start crawling. I turn his head (VERY VERY wet, gross, and slippery!) from side to side which helps with the inner ear balance. It also makes it a lot more enjoyable for him rather than his head rubbing on the table the whole time. We do this for five minutes, 8 times a day, with at least 10 minutes in between patterns. The teen girl helping us comes at 3 and stays till the nurse leaves at 6 so we are able to get all 8 done in this time.
"Masking" This is something I have not heard of anyone other than the Institutes doing,, but it is AMAZING! I carry on me a little timer and every three to five minutes to goes off. I go in to Dillon and place a mask over his mouth and nose. He starts breathing in carbon dioxide (CO2) and the CO2 makes his brain tell his lungs to breathe deeper. Once he starts breathing a little deeper than normal we start the clock and go for 30 seconds. (For all you medically inclined people - Dillon's bicarb levels have been checked many times while we have done this and they are excellent) This also helps because CO2 dilates the blood vessels so more blood - and more oxygen - can be carried to the brain. Pure oxygen constricts the blood vessels and less oxygen arrives at the brain - which causes more seizures. The masking actually helps the seizures. We have been told of kids who can't swallow or cry - just like Dillon - who will suddenly start these things after months of masking because their lungs are strong enough to do those things now. If any of you have ever had a bad asthma attack like I have, you know what it feels like when all your energy is being spent of trying to gasp in that breath. I can't talk, can hardly walk, and feel too weak to keep my head up when I get a bad attack. Dillon lives in this state every minute of every day of his life. I don't think there has ever been a time of easy breathing for him. Can you imagine having a bad asthma attack for 2.5 years!! After 2.5 days I literally start thinking I am going to die,, I just can't imagine it. Masking works! You may not understand it, and you shouldn't try it without learning from the IAHP how to do it, but I can tell you it is making a difference with Dillon! Since the Institutes have not seen Dillon yet (the first appointment is about 4,000-5,000 - we want to do it but just can't) the nurses are not allowed to do my masking. Which means that I am running from whatever else I am trying to get done to go mask every 3 minutes. I do 3 minutes because sometimes we have therapists here and I have to skip a lot, it kind of balances out. But I challenge you try this for even an hour or two. Set a timer online or on your stove for 3 minutes. Go do your house cleaning, laundry, dishes, etc. But every time it goes off stand there for about 45 seconds and then set it again and go back to cleaning. For those of you who have told me you want to know what it is like for us this is a good way. There is no way for me to help you know the emotional part of having your son so injured and disabled, but this would give you a good idea of that we do all day. (Please let me know if you tried it!) On the weekends I don't do nearly as many masks as I have to have some time to get other things done, but it is so important for Dillon I think I need to mask at least every 10-15 minutes. He just does SO much better when we are. It helps his cough and keep his lungs clear, he can breathe deep and keep his oxygen levels up, helps reduce the seizures, helps him be more alert, helps him coo more, etc.
"Notes" This is where I record how many people we had that day (Nurse/No nurse, S from 3-6, etc.) We also record any good things Dillon did, anything not so good like if he is sick, as well as appointments and other things that may have prevented us from being able to get the whole day done. We keep all these papers so that I can look back and see progress and what I did differently and so the Institutes can see them and help us make necessary changes.
I hope this gives you a better idea of what it is we are doing with Dillon, why we have been saying we need three people, and why I don't have time to do much else! :-D Will try my challenge with the timer and then pray for me. I need a lot of strength, dedication, and stubbornness to keep on top of all this. Especially the masking as it is so easy to forget. (It will amaze you how fast three minutes go by!) It is so important for Dillon's health to stay on top of this. Please pray for me, I really need God's help to not give up, to not slack off, and to stay encouraged. I have been doing this all for almost a full YEAR now and it has only been the last 2 weeks that we have seen a lot of progress. It is hard and very slow - but so worth it!