Tommy spoke with John's sleep doctor on Monday, and the results are in from his sleep study. There really isn't much to report. His study was basically the same. He had a little more than 5 apnea episodes per hour. His lowest oxygen saturation was 80% (at home we keep it above 90%). He hasn't gotten better, but he hasn't gotten worse. So the question was where do we go from here. For that, we were told to consult with his pulmonologist.
So yesterday, Tommy spoke with the pulmonology nurse. According to the doctor, since his study hasn't really changed, she thought we should go ahead and try letting his sleep without a ventilator. Instead of using the machine, we would just give him oxygen support throughout the night. That way, if he does have apnea and his oxygen saturations fall, the oxygen will help him recover quickly when he does begin to breath again.
There are some positives for not using the ventilator. First, the room would be quieter. Also he wouldn't have so many tubes in his bed and it would be easier for him to flip from side to side. We wouldn't have to worry so much about him getting tangled up. It would be easier to put him to bed, which means that maybe we can actually go out before bed time and let someone else put him to bed. This could mean that Tommy and I might actually be able to go away for a few days and leave him home with grandparents. We have never done that. It also makes travel easier. We only have to worry about taking oxygen with us instead of having to pack up a ventilator and all of the parts that go with it.
There are also a few negatives that could come from not using the ventilator. The main negative could be the quality of sleep he gets. When a person stops breathing while they are sleeping, the natural reaction is for the brain to wake the body up so they can start to breath again. If he is having a lot of apnea and he is waking up several times a night, he may not get the good quality of sleep that his body needs. This can affect development and learning as well as his mood and behavior. So this would be something we would have to keep a close eye on. The other big thing that we worry about not using the ventilator is that the insurance company might decide that we no longer need nursing support at night. I don't really think this will happen as long as he still has a trach. In fact, several years ago, he didn't sleep with a ventilator at all. We kept the nurse during that stretch. So I think we will be ok, but it is something to think about.
But the biggest impact of stopping the ventilator is long term. The doctor didn't say this in so many words, but Tommy and I both feel that if he does well without the ventilator, this could lead to him getting his trach out. The reason he still has the trach is so he can be ventilated while he sleeps. If he continues to get good sleep and thrive without benefit of the ventilator at night, then it is a very real possibility that he will no longer need the trach. That is what we have been hoping and praying about for so long. This possibility is still a while away. If and when the time comes to take the trach out, it has to be in either the spring or summer. Doctors do not remove trachs during the fall and winter, when cold and flu season is in full force. So even if this works well, we are looking at a minimum of next spring.
So the plan for now is to let him finish school. We will continue using the ventilator through the end of the school year, and then we'll start a trial run of no ventilator and see how it goes. Please pray for us and for John as we make this adjustment. For the first time in quite a while, we have gotten our hopes up for removing the trach. Hopefully this time will be the charm.
Showing posts with label goals. Show all posts
Showing posts with label goals. Show all posts
Friday, May 20, 2011
Saturday, April 9, 2011
Proud Momma, Part II
Yesterday, I met at John's school for his annual ARD (Admission, Review and Dismissal) committee meeting. This meeting is required anytime a student is admitted or dismissed from a special education program, and also when it's time to review the IEP (Individual Education Plan) and make appropriate changes as the progress of the student dictates. I told you in a previous post that John started this school year with about 5 goals, all of which came with him from PPCD. Through the course of this year and being in school all day, John has managed to master every one of his goals. This is outstanding progress for him. So, yesterday I met with his teacher, the school diagnostician as well as the different school therapists that provide him services, such as physical, occupational, speech and audiological therapies.
I knew that he was in need of updated goals, but I had no idea just how updated those goals would be. As I was reading the goals that the speech therapist had written, I was shocked to see the things she expects him to be able to do. A couple of the things she listed as goals were to be able to identify objects related to his environment (i.e. backpack, bus, table) and also to be able to identify characters in a story by pointing to their picture in the book. I read this and thought, "yeah right." But according to the speech therapist and his teacher, he's already doing some of these things. According to them, when shown two different pictures of objects that he is familiar with, he is able to grab the picture with the object that they ask him to identify. They say that they do this several times and mix the pictures up and he still grabs the appropriate picture. I had no idea that he is able to do anything like this, since this is not something we work on at home.
Another thing that I found out was that John does not meet the criteria to attend ESY (Extended School Year). That is just a fancy way of saying summer school. The general criteria to attend is that the child has to show a regression in what he learned after the Christmas break. According to his teacher, John did show a slight regression, but was able to quickly catch back up. This is the first year that my child is too smart for summer school. :) The only bad thing about that is now I have to figure out what to do with him all summer so that we don't kill each other. But his teacher and speech therapist are going to put together some activities for me to work with him on at home, particularly over the summer. So hopefully he won't fall behind too much when he starts 1st grade in a few months. I am about to have a 1st grader. That just doesn't seem possible.
Also added to his schedule for next year, he is going to attend all specials with his class. This year he is only going with them to music. Next year he'll be able to do music, art AND PE. He will be evaluated for adapted PE and hopefully that will be another place he can work on his walking. He will be integrated into the 1st grade classroom approximately 2.5 hours a week. I know John will enjoy being able to spend time with other kids his age.
On a separate note, I received a letter from his Kindergarten teacher on Wednesday, letting me know that next week, John will be their class's star of the week. So the project for that person is to make a poster that tells his classmates his likes and dislikes and things that make him who he is. Well naturally being the uncreative person that I am, I panicked at the thought of having to create a poster. I wanted it to be nice, but that is just not my area of expertise. So after hyperventilating and scouring my brain for ideas, I finally made my way over to Michael's for the few supplies I would need for this project. I am happy to report that I was able to start and finish the poster all in one day. Now I can enjoy the rest of the weekend without that hanging over my head. It is due on Monday. Here is the finished project. What do you think?
I knew that he was in need of updated goals, but I had no idea just how updated those goals would be. As I was reading the goals that the speech therapist had written, I was shocked to see the things she expects him to be able to do. A couple of the things she listed as goals were to be able to identify objects related to his environment (i.e. backpack, bus, table) and also to be able to identify characters in a story by pointing to their picture in the book. I read this and thought, "yeah right." But according to the speech therapist and his teacher, he's already doing some of these things. According to them, when shown two different pictures of objects that he is familiar with, he is able to grab the picture with the object that they ask him to identify. They say that they do this several times and mix the pictures up and he still grabs the appropriate picture. I had no idea that he is able to do anything like this, since this is not something we work on at home.
Another thing that I found out was that John does not meet the criteria to attend ESY (Extended School Year). That is just a fancy way of saying summer school. The general criteria to attend is that the child has to show a regression in what he learned after the Christmas break. According to his teacher, John did show a slight regression, but was able to quickly catch back up. This is the first year that my child is too smart for summer school. :) The only bad thing about that is now I have to figure out what to do with him all summer so that we don't kill each other. But his teacher and speech therapist are going to put together some activities for me to work with him on at home, particularly over the summer. So hopefully he won't fall behind too much when he starts 1st grade in a few months. I am about to have a 1st grader. That just doesn't seem possible.
Also added to his schedule for next year, he is going to attend all specials with his class. This year he is only going with them to music. Next year he'll be able to do music, art AND PE. He will be evaluated for adapted PE and hopefully that will be another place he can work on his walking. He will be integrated into the 1st grade classroom approximately 2.5 hours a week. I know John will enjoy being able to spend time with other kids his age.
On a separate note, I received a letter from his Kindergarten teacher on Wednesday, letting me know that next week, John will be their class's star of the week. So the project for that person is to make a poster that tells his classmates his likes and dislikes and things that make him who he is. Well naturally being the uncreative person that I am, I panicked at the thought of having to create a poster. I wanted it to be nice, but that is just not my area of expertise. So after hyperventilating and scouring my brain for ideas, I finally made my way over to Michael's for the few supplies I would need for this project. I am happy to report that I was able to start and finish the poster all in one day. Now I can enjoy the rest of the weekend without that hanging over my head. It is due on Monday. Here is the finished project. What do you think?
Well that is all this Proud Momma has to report for now. Keep praying for us that we maintain the strength and energy that we need to take care of our boy, and also for him as he continues to make progress with communication and reaching his full potential. Thanks to everyone for all of your love and support. We couldn't make it through this journey without you all.
Sunday, January 16, 2011
Proud Momma!
Last Friday, John came home from school with his 3rd report card for the year. His report cards are quite different than the ones other kids get. While most report cards come home with the subject and the letter grade beside it, his are print outs on several sheets. He doesn't get graded on subjects, but how well he has progressed toward each of his goals. Since he started PPCD 2 years ago, I have seen quite a few of these, but they are still difficult for me to read and understand. They have lots of numbers and symbols and I have to check the legend on the sheet to know what some of the symbols mean.
John has 5 goals on his IEP (Individual Education Plan). Some of these goals have a part A and a part B so I consider it 8 goals. Each goal has either an amount of time attached such as 8 seconds or 20 minutes, or it has a number such as 3 out of 5 trials. Over the past 2.5 years, I've read his report card and mostly have seen that while he's making slow progress, he's not quite getting a full grasp on his goals.
This report card was different. On 4 of his 8 goals, I saw the Symbol M next to it. I did not need to look at the legend to know what this symbol means. M = Mastered. That's right, my boy has mastered 4 out of his 8 goals. I was so surprised to see this. When I met with his teacher a couple of months ago, she told me that he was doing well and that we may need to adjust his goals or even add some new ones. But I never expected that he would do this well with them this early in the year.
These are the goals that John has mastered:
These are the goals he is still working on:
Words cannot express how proud I am of him for working so hard every single day to reach these accomplishments. Every little thing he sets out to do is so hard for him. I watch him everyday trying to do things like climb up on something, or pull up to stand and I think of how easy it is for me to do and how much he struggles to do those things. But one thing I have also noticed is how persistent he is. He doesn't give up. If he doesn't do something the first try, he gets back up and tries again. Sometimes all he needs is a little support or something to hold onto and then he's got it. It brings him such joy when he finally gets something he's been working toward for so long and it makes me so proud.
And of course, no matter what goals he achieves, you can't take away that sweet smile. No matter his circumstance or how hard he is working toward something, he always has a smile on his face. There is nothing in the world I'd rather look at. We all could learn something from him. No matter how hard life gets or how tough our circumstance, there is always a reason to smile!
John has 5 goals on his IEP (Individual Education Plan). Some of these goals have a part A and a part B so I consider it 8 goals. Each goal has either an amount of time attached such as 8 seconds or 20 minutes, or it has a number such as 3 out of 5 trials. Over the past 2.5 years, I've read his report card and mostly have seen that while he's making slow progress, he's not quite getting a full grasp on his goals.
This report card was different. On 4 of his 8 goals, I saw the Symbol M next to it. I did not need to look at the legend to know what this symbol means. M = Mastered. That's right, my boy has mastered 4 out of his 8 goals. I was so surprised to see this. When I met with his teacher a couple of months ago, she told me that he was doing well and that we may need to adjust his goals or even add some new ones. But I never expected that he would do this well with them this early in the year.
These are the goals that John has mastered:
John will demonstrate sustained attention with toys, books, or activities for a minimum of 8 seconds.
John will localize environmental/classroom sounds varying by loudness level (ie, drum, triangle, cymbals, different speakers, loud/soft voice) by turning head towards sound source in a variety of positions in 3/5 trials. a. five feet b. ten feet (he has mastered this from five feet and is at 2/5 trials from ten feet)
John will participate in a variety of classroom activities in varying positions by hitting a switch or simple voice output device with: a. Hand under hand assistance 5/5 trials b. Guided elbow 2/5 trials. (he has mastered both of these)
These are the goals he is still working on:
Once positioned correctly in his walker, John will walk for: a. 30 feet in 20 minutes by January 2011 b. 50 feet in 20 minutes by June 2011, in 3/5 trials for 5 consecutive weeks. (On Part A he has achieved 2/5 trials and Part B has not yet been introduced.)
During meal times, John will assist with feeding by holding a utensil and bringing it to his mouth with decreasing prompts which fade from full physical to partial physical in 3/5 trials for 5 consecutive weeks by June 2011. (he has achieved 2/5 trials)I must say something about each of the two goals above. The goal towards walking he actually can do. He does it at home with ease. But when he's at school and trying to walk in the hallways with people walking by and so much to look at, he gets distracted and I'm sure doesn't do as well. But when I take him outside here, he walks down the block and back. The goal towards feeding himself is a biggie for him. I have to confess that this is not something we work on at home. I need to start working towards it more at meal times. I'm just usually in a hurry to get him fed and I don't even think about it. But that would be a huge accomplishment for him if he can learn to do this.
Words cannot express how proud I am of him for working so hard every single day to reach these accomplishments. Every little thing he sets out to do is so hard for him. I watch him everyday trying to do things like climb up on something, or pull up to stand and I think of how easy it is for me to do and how much he struggles to do those things. But one thing I have also noticed is how persistent he is. He doesn't give up. If he doesn't do something the first try, he gets back up and tries again. Sometimes all he needs is a little support or something to hold onto and then he's got it. It brings him such joy when he finally gets something he's been working toward for so long and it makes me so proud.
And of course, no matter what goals he achieves, you can't take away that sweet smile. No matter his circumstance or how hard he is working toward something, he always has a smile on his face. There is nothing in the world I'd rather look at. We all could learn something from him. No matter how hard life gets or how tough our circumstance, there is always a reason to smile!
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