I don't have a lot of new information to blog about, but I do have a few thoughts I wanted to share. To tell you the first thought, I have to admit to you all that I am a weekly Grey's Anatomy watcher. I've watched the show from the very beginning, and have continued to watch through the years. It is one of my guilty pleasures that I don't admit to just anyone. It has a lot of questionable content, but some of the story lines fascinate me.
While watching last week's episode, there was a scene with a new mother who was faced with a difficult choice. Her son was born very premature and weighed just over a pound at birth. He has been through numerous difficulties and procedures, all trying to stabilize him and sustain his life. In this episode, a new complication arose and the doctors gave the mother a choice. The first option was to choose to have a surgery for him, that would be incredibly difficult on the baby and he may not live through, and there was no guarantee that it would help his condition. The second option was that she needed to consider what they called A N D (allow natural death). They gave the opinion that even if the baby survived, he would be facing possible Cerebral Palsey as well as many other medical issues his entire life. Would she want her son to be in pain every day, to know that he will probably never walk, or talk and would have to eat through a feeding tube his whole life? Is that a quality of life she wanted for him, or should she just let him die and be at peace?
This argument comes up frequently on television, but I gotta keep in mind that these are the same people who make characters who are supposedly Christians look crazy and they always promote a mother's right to choose abortion. I do have to admit they they did show the opposite side of the argument from the mother's perspective, but it didn't seem to be as convincing as the first side. But the point that stuck with me was that they seemed to be saying that her son would have no quality of life if he lived that way and it didn't seem to be worth it. To that I say, bull. Now, granted my son doesn't live in pain every day of his life, but he spent the first 3 years eating through a feeding tube. He has a tracheostomy tube to help him breath. He cannot walk, he cannot talk, and he still has to wear diapers. He is 100% dependent on us for survival. But every morning I carry him from his bed to the living room and I get a huge hug when I do. As I'm getting him dressed, when I sit him up to put his shirt on, he almost always leans forward and wraps his arms around my neck, and sometimes, I can't get him to let go. When he gets off of the school bus and sees me, he has a huge smile on his face and when I take him out of his chair, I get another hug that says he missed me. He may not be able to tell me that he loves me, but he shows me every time he wraps his arms around my neck. Even with his circumstances, he rarely cries and is almost always happy. He lives life to the fullest each and every day, as if to say, I'm just happy to be alive. We should all live our life that way. Sure, I wish life were easier on him, easier on us, but if I had it to do over again, I wouldn't change it. I would rather have my son the way he is now, then not have him at all. It is worth every single second I get to spend with him each day.
Something else that has hit home for me in the last couple of weeks came straight from God's word. Our Sunday School class has been studying a book called "Read the Bible for Life" by George Guthrie. When we started to study the book, it really hit me that I spend almost zero time reading God's word. What I know about it, I heard through stories growing up in Sunday School. Most of those stories I have never actually read for myself. So I decided to make a committment to spend time in God's word every day. I started a reading plan that, if followed exactly, will allow me to read through the whole bible in one year. So far I have been pretty solid in following through, although I have missed a few days here and there. But I have made it a priority each morning, after I get John on the school bus. Before I do anything else, I come in, fix a cup of coffee and sit down to spend time in his word.
A couple of weeks ago, I began reading through Exodus. This is where Moses is born and goes to live with Pharoah's daughter as her son. His mother gave him up to her to spare his life. Then later in his life, God uses Moses to lead the Isrealites out of Egypt and out from under Pharoah's rule. He has promised them a great land to live in and Moses is to lead them there. But God chose not to lead them on the most direct route to this land. Instead he led them through the desert, where they would face many obstacles along the way. This is where it hit home for me. He led them through what we would call (the scenic route) for several reasons. First, it was because if they had gone the more direct way, they would have had to cross the land of the Philistines, whom they would have had to fight, and they were not ready to do battle with such a powerful army. Second, God wanted his people to be prepared to live in the promise land. They had been in captivity for hundreds of years and their habits of dependency and lack of faith had deep roots. He used the trials and hardships of their journey through the desert to teach them faith. Third, God simply wanted them to take him at his word. He told them that he would protect them and provide for them, but they didn't believe him. He wanted to show them all of the ways he can do so. And last, but probably the most profound for me, is that God's map may not be the shortest route so that lessons may be learned along the way.
That is something I am beginning to finally learn with John. When he first got his trach, we were told that he would probably have it for 6 months to a year. But obviously, God had a lot to teach us, because nearly 7 years later, he still has it. We have learned a lot during that time, but mostly I have learned that God's timing is all that matters. I have learned to have faith that he is in completely control. John will be okay, and we will be okay. We just have to learn to trust him and not try to solve everything ourselves.
There is one quick update on John. Last week I took him to see his Opthalmologist for the first time in a year and a half. I was supposed to take him back a year from the last visit, but time got away from us. We knew that he was somewhat near sighted before and that he was borderline of needing glasses. But we were convinced that he would not leave them on his face, so she didn't push the issue. Well when we went last week, his prescription has doubled since the last time he saw her. Not only is he very near sighted, but his eyes are worse than mine were before I had the Lasix surgery. I know how incredibly blurry my vision was without contacts, so I can't believe he has been getting along all this time without any glasses. So I talked with a close friend of mine, who happens to be my eye doctor, and I talked with the folks at her office who fit people for glasses. We came across some frames that are made for recreation. They are called Rec Specs and instead of having the arm go behind the ear, they go along the side of his head and then have a strap across the back to hold them in place. Essentially, they look a lot like goggles. I think these may work best for him. So we are waiting to get those frames in so we can try them on John and see how they work for him. He has never been excited about having anything near his eyes, and normally doesn't let us even put sun glasses on him. But my hope is that once we get them on and he realizes how much better he can see, that he won't want to take them off. I can't wait to post pictures of how he looks in them.
There is one finally thing I want to leave you with today. A friend of mine sent me a link to a blog of a family she knows. They had a baby boy in March, and even before he was born, they knew there would be complications. He has some neurological problems and they are faced with making some very tough decisions. They are strong and faithful people, and they are praying for God to help them make the right decision. If you would like to know more about this family, you can go to their blog here Please join me in praying for these parents and for this precious little boy who has gone through so much in such a short period of time.
Tuesday, April 10, 2012
Monday, April 2, 2012
That was fun while it lasted
Today is Monday and that means another therapy day. Last week, neither therapy was very good. He wasn't much interested in the eating, and he was just not having any part of physical therapy. So today we set off once again to see how it would go. He did a little better with OT and eating, but still not as good as he has been doing. But the PT is where it all goes down hill.
Since I posted a few months ago about how well he did during a PT session, I was hoping to be able to build on that and have a lot more good things to tell you. But there hasn't been much. It seems that each session since has steadily declined and we are at the point now where he won't do anything that we want him to do. Today, I had enough of watching him. I know the things he is capable of and he is just not doing any of them in therapy. I can tell by the demeanor of his therapist the last few weeks that she no longer knows what to do with him either. She has continued to try, but nothing seems to work for him. I don't know if it's the therapist and he's just not relating to her, or if he is just really that stubborn and just doesn't find any of it interesting. So today I made the tough decision to discontinue his PT for the time being. This doesn't mean that we won't start back again in the future, but for now, it's not worth the time or effort being put into it, because he is taking nothing away from it. He does better on his own at home. Both his therapist and I agree that something needs to be done about his sensory problems in order to make progress in his gross motor skills. I would say that it was fun while it lasted, but it really wasn't.
Today I came home in search of a solution for this. My immediate thought is horse back riding, or hippotherapy. Since I struck out with the place closest to us last week, I decided to call the place that we tried 2 years ago and see if I can make any headway. I spoke to a lady at one of their locations and she informed me that they don't do hippotherapy because they do not have any licensed therapists on staff. They only do therapeutic riding, which is different. I'll explain in a few minutes what the difference is. But she told me she would contact the lady at the other location and we could have an evaluation and see if therapeutic riding would benefit John in any way. I asked the lady if she knew of any other places in the area that offers the hippotherapy and she gave me the name Joy Riding Program. This place is located in Magnolia, which is probably about an hour's drive from here. They have licensed Physical and Occupational Therapists on staff. So I called them for information.
I spoke with a very nice lady named Lee, who was extremely helpful. I felt like I was finally making progress. Lee went over what they do and it all sounds great. I was a little misinformed about what hippotherapy really is so it was nice to get a clarification on it. Of course they don't have any spots at the moment, but she felt confident that he could get in for their 7 week summer session and then it would be a possibility that something would open up for the fall so he could continue riding. So my next step is to fill out the registration packet and send it back so that they can set us up for an evaluation. After talking with Lee, I am much less discouraged than I was when I left TCH this morning. And I should add that on my way home from therapy, I prayed and asked God to help us figure out the right path for John and to provide him the opportunity. Of course, God being God, he seems to be answering that prayer right away. Although we aren't officially enrolled in the program, I know God is working and that big things are on the horizon for John. I'm learning more and more each day about just how mighty our God is!
I want to share with you a video that the Joy Riding Program has on their website. The video is about 12:30 long and it explains the difference between therapeutic riding and hippotherapy and it also explains all of the things that hippotherapy does. Talking with Lee did make me feel better, but watching this video made me hopeful of all of the things John could accomplish if we can just get him on a horse.
Please pray for us and for John as we continue to search for ways to help improve his gross motor skills. Pray that God will open the doors to the right program that is going to help John make bigger strides toward his potential. Also pray that we will continue to trust in God's perfect timing and to know he is leading the way. I read this morning about God leading the Isrealites out of Egypt and away from Pharoah and I was thinking I could really use a pillar of cloud to lead me in the direction he wants me to go. But I have faith that if I seek his guidance and listen, he will show me the way.
Since I posted a few months ago about how well he did during a PT session, I was hoping to be able to build on that and have a lot more good things to tell you. But there hasn't been much. It seems that each session since has steadily declined and we are at the point now where he won't do anything that we want him to do. Today, I had enough of watching him. I know the things he is capable of and he is just not doing any of them in therapy. I can tell by the demeanor of his therapist the last few weeks that she no longer knows what to do with him either. She has continued to try, but nothing seems to work for him. I don't know if it's the therapist and he's just not relating to her, or if he is just really that stubborn and just doesn't find any of it interesting. So today I made the tough decision to discontinue his PT for the time being. This doesn't mean that we won't start back again in the future, but for now, it's not worth the time or effort being put into it, because he is taking nothing away from it. He does better on his own at home. Both his therapist and I agree that something needs to be done about his sensory problems in order to make progress in his gross motor skills. I would say that it was fun while it lasted, but it really wasn't.
Today I came home in search of a solution for this. My immediate thought is horse back riding, or hippotherapy. Since I struck out with the place closest to us last week, I decided to call the place that we tried 2 years ago and see if I can make any headway. I spoke to a lady at one of their locations and she informed me that they don't do hippotherapy because they do not have any licensed therapists on staff. They only do therapeutic riding, which is different. I'll explain in a few minutes what the difference is. But she told me she would contact the lady at the other location and we could have an evaluation and see if therapeutic riding would benefit John in any way. I asked the lady if she knew of any other places in the area that offers the hippotherapy and she gave me the name Joy Riding Program. This place is located in Magnolia, which is probably about an hour's drive from here. They have licensed Physical and Occupational Therapists on staff. So I called them for information.
I spoke with a very nice lady named Lee, who was extremely helpful. I felt like I was finally making progress. Lee went over what they do and it all sounds great. I was a little misinformed about what hippotherapy really is so it was nice to get a clarification on it. Of course they don't have any spots at the moment, but she felt confident that he could get in for their 7 week summer session and then it would be a possibility that something would open up for the fall so he could continue riding. So my next step is to fill out the registration packet and send it back so that they can set us up for an evaluation. After talking with Lee, I am much less discouraged than I was when I left TCH this morning. And I should add that on my way home from therapy, I prayed and asked God to help us figure out the right path for John and to provide him the opportunity. Of course, God being God, he seems to be answering that prayer right away. Although we aren't officially enrolled in the program, I know God is working and that big things are on the horizon for John. I'm learning more and more each day about just how mighty our God is!
I want to share with you a video that the Joy Riding Program has on their website. The video is about 12:30 long and it explains the difference between therapeutic riding and hippotherapy and it also explains all of the things that hippotherapy does. Talking with Lee did make me feel better, but watching this video made me hopeful of all of the things John could accomplish if we can just get him on a horse.
Please pray for us and for John as we continue to search for ways to help improve his gross motor skills. Pray that God will open the doors to the right program that is going to help John make bigger strides toward his potential. Also pray that we will continue to trust in God's perfect timing and to know he is leading the way. I read this morning about God leading the Isrealites out of Egypt and away from Pharoah and I was thinking I could really use a pillar of cloud to lead me in the direction he wants me to go. But I have faith that if I seek his guidance and listen, he will show me the way.
Monday, March 26, 2012
City Life isn't Always a Good Thing
Most of you know that I grew up in a very small town in Louisiana. With the exception of the 4 years I went to college in just a slightly larger town, that is the only place I ever knew. Then I got married and moved to the 4th largest city in the country. It was a shock in the beginning, having to learn where the northwest freeway and the south loop and the west belt were. I still haven't figured all of those things out completely and I really don't know why we don't just call them by their actual names. But that is the way they do things here and if I want to know where accidents are when they talk about them on the radio, I better learn them. I soon learned that just because you are part of a large city, doesn't mean you have to actually go into the city. Every area of town is kind of like it's own small town. We live in Katy, which is the west side of Houston,and I rarely have to go into Houston city limits because most of what I need is in Katy. Now, Katy is quite larger than where I grew up, but it still has a small town feel and it helps to not feel so overwhelmed. I have really enjoyed living here. We also have one of the largest and best medical centers in the country and between myself and John, we are very fortunate to have that at our disposal.
But sometimes I wonder what the point of having all of this is if you can't actually have access to what you need. Specifically, I am having a hard time getting specific therapy services for John that our friends in Austin (by far a smaller city) has been getting for quite some time.
A few years ago, I heard about something called hippo therapy(it has nothing to do with hippopotamuses) from our Austin friends. I had never heard of it before. It is a type of therapy that uses horses. Study shows that the gait of a horse is most similar to the gait of humans, so kids who are immobile could benefit from riding horses and getting the feel of the movement when they walk. Other benefits are increased trunk control, a stronger core, and sensory integration. I found out about a company that does this and they have 3 locations in the Houston area. However the closest to us is in Missouri City and that can be close to an hour drive each way. So we thought this would be a great summer activity for John and we would be willing to drive that far once a week if it could in deed help him. So I took him out there for an evaluation and to tour the grounds. It's a great set up and a nice area. The lady who did the evaluation said she thought John could definitely benefit from this therapy. However, she thinks he needs to start with either a physical or occupational therapist and at the time they didnt have one on staff. But they were trying to hire one and when they did, they would give us a call. It's been two years and I still haven't heard from them.
So then I began to hear people talk about a different place in Houston that does the same therapy. This place would be a closer drive for us. I've called the place twice in the past and got no return call. This morning I finally got through to someone and the answer I got was that they currently have a long waiting list and couldn't tell me how long it might take for a spot to open up for him. But once again, they would give me a call when they had something. How much do you want to bet that I never hear from these people again. Why is it that my friend in Austin had no trouble getting in and has been doing this for a couple of years, but we can't even get a call back from anyone here?
The other therapy I want John to do is called therasuit therapy. This is very difficult to describe, so if you want to know more about it go to www.suittherapy.com. This is a very intense therapy. It lasts for 3 weeks and we would go five days a week for 2 hours each day. It is designed to help with balance, coordination, sensory, motor skills and strengthening the muscles. Again, I found out about this from our friend in Austin. A few summers ago, they came to Houston to this particular location and did the 3 week therapy. Now, there is a place they go in Austin and they are able to do it regularly there. However, this seems to be the only place in Houston who offers this type of therapy. Last summer we went for an evaluation and again they thought John was a good candidate for the therapy. However, they didn't have Any openings until October. Because of the location and the amount of time we would spend traveling to the place, it wasn't an option for us to do it during the school year. So we set up time for this summer to go back and get started. While that time is just a few months away, it frustrates me to think that we have wasted all of this time when he could have been doing it already. I am looking forward to him doing this, but the drive each day is going to be brutal. Just one more disadvantage of living in the city.
Here is a problem we are facing. John is in private physical therapy on a weekly basis. But the sensory issues that I talked about are beginning to get in the way of him making any real progress. The therapist and I both feel that if not for the sensory, he would be more than capable of walking and standing. Both of the therapies I've talked about can address the sensory so that he can start making progress, but we can't seem to get into those. So I feel like I'm beating my head against the wall each week when I bring him to PT. He is so big and strong enough to get out of any position the therapist puts him in. If he doesn't want to do something, you can't make him. And it quite often feels like he doesn't want to do the things we want him to do. So do we keep beating our heads against the wall and hope we will see a breakthrough, or do we keep waiting for a spot to open up elsewhere in this giant city?
On a different note, we are still making progress with sleep. It has been almost 2 months and still no ventilator and no oxygen. We have finally let ourselves talk about removing the trach. I even talked to his ENT (who would actually be the one to take it out) and she told me what the game plan would be. So if all continues to go well, and the sleep study in May is good, we could be trach free some time this summer. Now that is something to celebrate.
But sometimes I wonder what the point of having all of this is if you can't actually have access to what you need. Specifically, I am having a hard time getting specific therapy services for John that our friends in Austin (by far a smaller city) has been getting for quite some time.
A few years ago, I heard about something called hippo therapy(it has nothing to do with hippopotamuses) from our Austin friends. I had never heard of it before. It is a type of therapy that uses horses. Study shows that the gait of a horse is most similar to the gait of humans, so kids who are immobile could benefit from riding horses and getting the feel of the movement when they walk. Other benefits are increased trunk control, a stronger core, and sensory integration. I found out about a company that does this and they have 3 locations in the Houston area. However the closest to us is in Missouri City and that can be close to an hour drive each way. So we thought this would be a great summer activity for John and we would be willing to drive that far once a week if it could in deed help him. So I took him out there for an evaluation and to tour the grounds. It's a great set up and a nice area. The lady who did the evaluation said she thought John could definitely benefit from this therapy. However, she thinks he needs to start with either a physical or occupational therapist and at the time they didnt have one on staff. But they were trying to hire one and when they did, they would give us a call. It's been two years and I still haven't heard from them.
So then I began to hear people talk about a different place in Houston that does the same therapy. This place would be a closer drive for us. I've called the place twice in the past and got no return call. This morning I finally got through to someone and the answer I got was that they currently have a long waiting list and couldn't tell me how long it might take for a spot to open up for him. But once again, they would give me a call when they had something. How much do you want to bet that I never hear from these people again. Why is it that my friend in Austin had no trouble getting in and has been doing this for a couple of years, but we can't even get a call back from anyone here?
The other therapy I want John to do is called therasuit therapy. This is very difficult to describe, so if you want to know more about it go to www.suittherapy.com. This is a very intense therapy. It lasts for 3 weeks and we would go five days a week for 2 hours each day. It is designed to help with balance, coordination, sensory, motor skills and strengthening the muscles. Again, I found out about this from our friend in Austin. A few summers ago, they came to Houston to this particular location and did the 3 week therapy. Now, there is a place they go in Austin and they are able to do it regularly there. However, this seems to be the only place in Houston who offers this type of therapy. Last summer we went for an evaluation and again they thought John was a good candidate for the therapy. However, they didn't have Any openings until October. Because of the location and the amount of time we would spend traveling to the place, it wasn't an option for us to do it during the school year. So we set up time for this summer to go back and get started. While that time is just a few months away, it frustrates me to think that we have wasted all of this time when he could have been doing it already. I am looking forward to him doing this, but the drive each day is going to be brutal. Just one more disadvantage of living in the city.
Here is a problem we are facing. John is in private physical therapy on a weekly basis. But the sensory issues that I talked about are beginning to get in the way of him making any real progress. The therapist and I both feel that if not for the sensory, he would be more than capable of walking and standing. Both of the therapies I've talked about can address the sensory so that he can start making progress, but we can't seem to get into those. So I feel like I'm beating my head against the wall each week when I bring him to PT. He is so big and strong enough to get out of any position the therapist puts him in. If he doesn't want to do something, you can't make him. And it quite often feels like he doesn't want to do the things we want him to do. So do we keep beating our heads against the wall and hope we will see a breakthrough, or do we keep waiting for a spot to open up elsewhere in this giant city?
On a different note, we are still making progress with sleep. It has been almost 2 months and still no ventilator and no oxygen. We have finally let ourselves talk about removing the trach. I even talked to his ENT (who would actually be the one to take it out) and she told me what the game plan would be. So if all continues to go well, and the sleep study in May is good, we could be trach free some time this summer. Now that is something to celebrate.
Monday, February 13, 2012
Where has this kid been all this time?
Well, it's Monday, and around here Mondays are for therapy. John goes to Occupational therapy at 9am and Physical therapy at 10am every Monday morning. Then he goes to school for the second half of the day. Which means, he's pretty pooped by the time he gets home at 4:00. So this morning, on this rainy, dreary day, we loaded in the car and hauled ourselves to therapy.
He hasn't been in 2 weeks. His physical therapist was out last week, so we decided to take the week off from occupational therapy as well. So I wasn't sure what to expect after missing a week. Normally, he does really well for OT and then is extremely stubborn with PT. His OT has been working on him moving food around in his mouth with his tongue, chewing food before swallowing, and drinking from a cup. He has been doing well with these things even though it is still hard for him. You never realize how much work you actually have to do with your mouth in order to eat food until you watch someone who can't do it. His OT is always happy with the work he does and she has seen improvement since we started this past summer. But today, she said he was in his own world. It was kind of his way or the highway and he didn't work as hard as he normally does for her. So I guess I can give him one bad week, since he normally does really well.
When we got to PT at 10:00, I was a little skeptical. If he was stubborn for OT, what on earth was he going to be like for PT. He's always stubborn for her, so I can't imagine him being worse. All of the things she is trying to get him to do for her, he does at home with no problem. But for some reason, when he is in that room with her, he won't do any of it. So this past week, I took some videos of him at home. One was him crawling on all fours with his head up, like she has been trying to get him to do for months now and one was of him walking along the wall in the hallway. She was so excited to see those videos to know that he really can do those things. After we saw him last time, I got the impression that she was very frustrated and discouraged with what they have been able to do so far. But all of that changed today.
The first thing she did was put him in a set of parrallel bars that they have to see how he would stand in them. Not only did he stand in them, but he grabbed on and started walking. That was the first big surprise. Then she wanted to do just some static standing with him to work on his balance and stability. The PT tech that was with us had a toy that really caught John's attention and he stood there and played with that toy for at least 10 minutes. The PT sat behind him and held his belt loop and had one hand on his shoulder and John did the rest of the work, without holding onto anything. He was having so much fun with that toy, and his therapist just couldn't believe how well he was doing. Then she wanted to see him walk with a walker. The one we used today was different than what we have at home. At home we use a gait trainer. It's heavier and has lots of straps and supports for him. But the walker is more like what you see older people use. The bar goes in the back and he just hangs onto the sides and walks, guiding it where he wants to go. There are no straps or supports for him and it isn't as heavy. With this, he walked around a section of hallway that was about 250 feet. He was a little slow, and she had to use her foot to keep him from crossing his feet as he walked, but he made it all the way around. When we came back into the therapy room, she gave him a short break and then worked with him going from the sitting position to the standing position. He did pretty well with this as well. Although going from standing back to sitting is a little more difficult for him.
Overall, it was an excellent therapy session and I think it even rejuvenated his therapist some. She seemed to be less discouraged now that she has seen all of the things he is capable of. She has a better sense of what he can do and where to go from here, so I think that will really help us going forward. I joked with him saying that the clothes he was wearing was his therapy outfit and that I was going to make him wear it every week to therapy. I really was only half kidding. Hey, if something is working, why change it, right? The only other factor we could think of was that he was wearing his hearing aids today. Apparently, I haven't been putting them on him before therapy in the mornings, but for some reason I did today. Maybe he was more alert with them on and that is why he was doing well. Or maybe it's just taken all of this time for him to get comfortable with the therapist and to decide he wanted to do the work. Whatever it was, I hope he keeps it up. It's definitely something I have been praying about, for us to figure out what exactly was going to motivate him to work. It's very exciting to see him do so well.
I'll end this post today with two pictures and a video I took of him at therapy. He is such a big boy!
He hasn't been in 2 weeks. His physical therapist was out last week, so we decided to take the week off from occupational therapy as well. So I wasn't sure what to expect after missing a week. Normally, he does really well for OT and then is extremely stubborn with PT. His OT has been working on him moving food around in his mouth with his tongue, chewing food before swallowing, and drinking from a cup. He has been doing well with these things even though it is still hard for him. You never realize how much work you actually have to do with your mouth in order to eat food until you watch someone who can't do it. His OT is always happy with the work he does and she has seen improvement since we started this past summer. But today, she said he was in his own world. It was kind of his way or the highway and he didn't work as hard as he normally does for her. So I guess I can give him one bad week, since he normally does really well.
When we got to PT at 10:00, I was a little skeptical. If he was stubborn for OT, what on earth was he going to be like for PT. He's always stubborn for her, so I can't imagine him being worse. All of the things she is trying to get him to do for her, he does at home with no problem. But for some reason, when he is in that room with her, he won't do any of it. So this past week, I took some videos of him at home. One was him crawling on all fours with his head up, like she has been trying to get him to do for months now and one was of him walking along the wall in the hallway. She was so excited to see those videos to know that he really can do those things. After we saw him last time, I got the impression that she was very frustrated and discouraged with what they have been able to do so far. But all of that changed today.
The first thing she did was put him in a set of parrallel bars that they have to see how he would stand in them. Not only did he stand in them, but he grabbed on and started walking. That was the first big surprise. Then she wanted to do just some static standing with him to work on his balance and stability. The PT tech that was with us had a toy that really caught John's attention and he stood there and played with that toy for at least 10 minutes. The PT sat behind him and held his belt loop and had one hand on his shoulder and John did the rest of the work, without holding onto anything. He was having so much fun with that toy, and his therapist just couldn't believe how well he was doing. Then she wanted to see him walk with a walker. The one we used today was different than what we have at home. At home we use a gait trainer. It's heavier and has lots of straps and supports for him. But the walker is more like what you see older people use. The bar goes in the back and he just hangs onto the sides and walks, guiding it where he wants to go. There are no straps or supports for him and it isn't as heavy. With this, he walked around a section of hallway that was about 250 feet. He was a little slow, and she had to use her foot to keep him from crossing his feet as he walked, but he made it all the way around. When we came back into the therapy room, she gave him a short break and then worked with him going from the sitting position to the standing position. He did pretty well with this as well. Although going from standing back to sitting is a little more difficult for him.
Overall, it was an excellent therapy session and I think it even rejuvenated his therapist some. She seemed to be less discouraged now that she has seen all of the things he is capable of. She has a better sense of what he can do and where to go from here, so I think that will really help us going forward. I joked with him saying that the clothes he was wearing was his therapy outfit and that I was going to make him wear it every week to therapy. I really was only half kidding. Hey, if something is working, why change it, right? The only other factor we could think of was that he was wearing his hearing aids today. Apparently, I haven't been putting them on him before therapy in the mornings, but for some reason I did today. Maybe he was more alert with them on and that is why he was doing well. Or maybe it's just taken all of this time for him to get comfortable with the therapist and to decide he wanted to do the work. Whatever it was, I hope he keeps it up. It's definitely something I have been praying about, for us to figure out what exactly was going to motivate him to work. It's very exciting to see him do so well.
I'll end this post today with two pictures and a video I took of him at therapy. He is such a big boy!
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| reaching for a toy |
Thursday, February 9, 2012
Progress...Maybe?
It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going. The first 3 nights were great. He slept with no ventilator and no oxygen and did quite well. But when Friday night came around, all of a sudden, he needed oxygen right away. So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off. Saturday night was much the same, except the oxygen was turned off at 4am. So at this point I'm thinking, 3 steps forward and 2 steps back.
Sunday night came and we were able to get him to sleep without the oxygen. So I thought we were making progress. But in the morning, the nurse told me he turned the oxygen on from 1am to 4am. DRATS! I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does. I'm just thinking maybe he's more tired and not taking deep enough breaths.
Monday and Tuesday were much the same. He needed oxygen part of the night, but not all of the night. By now it's really starting to bug me. I guess all of these years with John has not given me much patience. I want to see progress but I'm not doing so well to wait for it.
So last night, we put him to bed and it was the same thing. His oxygen levels were below 92 and wouldn't come up without oxygen. And even with the oxygen, they were only around 93 or 94. None of it made any sense to me. He should have higher oxygen sats with oxygen. So I sat down in the chair in his room and began to tear up. I'm just about at my breaking point and about ready to put him back on the ventilator. I want my baby to sleep well and I want to make sure he's able to breathe well. So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading. We have been struggling with the pulse ox probe on his toe. It's very tricky to get it in just the right spot to get a good reading. But his thumb is smaller so it shouldn't be hard to get it on there right. So we get it on his thumb, and low and behold his oxygen saturation is 98%. AMAZING! Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen. The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head. That would cause a problem with the signal picking up. So again, my brilliant husband suggested that we put it on his second toe instead of his big toe. It's smaller and we shouldn't have a problem getting it on. So that is what we ended up doing. And VOILA! No oxygen was needed all night long. He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.
So maybe the progress wasn't necessarily John's this time. He has probably been doing just fine all along and we didn't know. Maybe the progress was mine. I am the one who needs to learn a little patience. I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.
Sunday night came and we were able to get him to sleep without the oxygen. So I thought we were making progress. But in the morning, the nurse told me he turned the oxygen on from 1am to 4am. DRATS! I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does. I'm just thinking maybe he's more tired and not taking deep enough breaths.
Monday and Tuesday were much the same. He needed oxygen part of the night, but not all of the night. By now it's really starting to bug me. I guess all of these years with John has not given me much patience. I want to see progress but I'm not doing so well to wait for it.
So last night, we put him to bed and it was the same thing. His oxygen levels were below 92 and wouldn't come up without oxygen. And even with the oxygen, they were only around 93 or 94. None of it made any sense to me. He should have higher oxygen sats with oxygen. So I sat down in the chair in his room and began to tear up. I'm just about at my breaking point and about ready to put him back on the ventilator. I want my baby to sleep well and I want to make sure he's able to breathe well. So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading. We have been struggling with the pulse ox probe on his toe. It's very tricky to get it in just the right spot to get a good reading. But his thumb is smaller so it shouldn't be hard to get it on there right. So we get it on his thumb, and low and behold his oxygen saturation is 98%. AMAZING! Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen. The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head. That would cause a problem with the signal picking up. So again, my brilliant husband suggested that we put it on his second toe instead of his big toe. It's smaller and we shouldn't have a problem getting it on. So that is what we ended up doing. And VOILA! No oxygen was needed all night long. He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.
So maybe the progress wasn't necessarily John's this time. He has probably been doing just fine all along and we didn't know. Maybe the progress was mine. I am the one who needs to learn a little patience. I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.
Wednesday, February 1, 2012
Baby Steps
Yesterday, we had an appointment to see John's pulmonologist. It was his 6 month check up. The fact that it's been six months is a good sign, because until recently, we were seeing her every 3-4 months. We've gotten in the habit of going to these appointments with little to no expectations. Things don't seem to change much and we just expect them to tell us to keep the status quot. But something seemed different about this appointment. Maybe it was God telling us that it was going to be important.
Tommy doesn't always go with me to his doctor's appointments. After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there. But yesterday, he really wanted to be there. So he had to rearrange his schedule a little to make it. Of course, the wait was forever and I was glad to have him there. He went out and lit a fire under them after we had been there for an hour. I wouldn't have done that, because it's just not my personality. But he has no problems doing it. Within 3 minutes, the nurse was in to see us.
The doctor came in and looked over his records and read through the sleep study he had last May. While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased. In the beginning, he was having 100's of apnea events per hour of sleep. In May, the report showed he was having between 5 and 6 apnea events per hour. I'd say that's a huge improvement, but it was still somewhat of a concern. The other part of the equation is what his oxygen saturations look like during that time. At home, we try to keep him above 90% and that usually requires a ventilator and oxygen. During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event. So that is somewhat concerning. The reports do no indicate that he is ready to have his trach removed just yet.
Now for the encouraging news. We made a plan. It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve. So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen). We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it. For the past several months, he has been on the ventilator every night. She wanted us to just stop using the ventilator completely, and see how he does. The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day. The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath. This could cause him to have a restless night and not get enough rest. A lack of rest at night can cause problems with learning and overall development. Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest. She told us to try this every night and after a month, check back with her and let her know how he does.
So last night was our first try. He was very tired yesterday and could barely stay awake. He fell asleep as soon as he finished his dinner. I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%. That's a great start. When he sleeps off of the ventilator, we usually have him on just oxygen. So we put something called an HME over his trach. This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose. It is not good for someone to always breath dry and cold air. It dries out your airway. This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway. So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on. The plan is to keep his saturations above 92% with as little oxygen as possible. Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned. But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.
After I put him in bed, I stayed up until 10:00 when the nurse got there. His oxygen had dropped 3 or 4 times in that period, but it always came right back up. When the nurse got there, his oxygen was 96%. I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him. I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%.
NICU at 3 months. She knows his night time routines better than we do. He is her baby and she takes care of him better than any nurse we've ever had. She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on. So the fact that he stayed off all night is very encouraging to us.
We both said that we wouldn't get our hopes up. We have done so too many times to count and we have been disappointed every time. So while we aren't getting our hopes up, we are encouraged. It was just the first night, so time will tell how he is really doing. Our big focus will be whether we see a difference in him during the day. I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.
All of this is just baby steps towards our ultimate goal of having his trach removed. And even though the steps are small, they are still the biggest we've taken towards this goal so far. The long term plan is to continue this at night and then in a few months we will have a sleep study. If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good. It will mean so much to us if we are finally able to do that. It will improve the quality of life for him and for us. There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much. One thing I can't wait for him to do is go swimming and splash the water as much as he wants. But the first thing we will do is throw a giant party and you are all invited.
Please pray for us as we go through this process. Pray for John that he will continue to thrive and have good nights. And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad. Pray for Tommy and I, that we will know what is best for him. Pray that we will see the signs if this isn't working for him and we will know the best way to help him. And pray for the doctors as they will be making the ultimate decision for us. Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.
Thanks once again for taking this journey with us. We couldn't make it without your love and support and you will never know how much your encouragement means to us. I hope to post more updates (hopefully all positive) as we continue on this path. And with that, I will leave you with a couple of photos I took of John this week.
Tommy doesn't always go with me to his doctor's appointments. After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there. But yesterday, he really wanted to be there. So he had to rearrange his schedule a little to make it. Of course, the wait was forever and I was glad to have him there. He went out and lit a fire under them after we had been there for an hour. I wouldn't have done that, because it's just not my personality. But he has no problems doing it. Within 3 minutes, the nurse was in to see us.
The doctor came in and looked over his records and read through the sleep study he had last May. While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased. In the beginning, he was having 100's of apnea events per hour of sleep. In May, the report showed he was having between 5 and 6 apnea events per hour. I'd say that's a huge improvement, but it was still somewhat of a concern. The other part of the equation is what his oxygen saturations look like during that time. At home, we try to keep him above 90% and that usually requires a ventilator and oxygen. During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event. So that is somewhat concerning. The reports do no indicate that he is ready to have his trach removed just yet.
Now for the encouraging news. We made a plan. It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve. So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen). We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it. For the past several months, he has been on the ventilator every night. She wanted us to just stop using the ventilator completely, and see how he does. The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day. The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath. This could cause him to have a restless night and not get enough rest. A lack of rest at night can cause problems with learning and overall development. Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest. She told us to try this every night and after a month, check back with her and let her know how he does.
So last night was our first try. He was very tired yesterday and could barely stay awake. He fell asleep as soon as he finished his dinner. I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%. That's a great start. When he sleeps off of the ventilator, we usually have him on just oxygen. So we put something called an HME over his trach. This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose. It is not good for someone to always breath dry and cold air. It dries out your airway. This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway. So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on. The plan is to keep his saturations above 92% with as little oxygen as possible. Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned. But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.
After I put him in bed, I stayed up until 10:00 when the nurse got there. His oxygen had dropped 3 or 4 times in that period, but it always came right back up. When the nurse got there, his oxygen was 96%. I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him. I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%.
NICU at 3 months. She knows his night time routines better than we do. He is her baby and she takes care of him better than any nurse we've ever had. She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on. So the fact that he stayed off all night is very encouraging to us.
We both said that we wouldn't get our hopes up. We have done so too many times to count and we have been disappointed every time. So while we aren't getting our hopes up, we are encouraged. It was just the first night, so time will tell how he is really doing. Our big focus will be whether we see a difference in him during the day. I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.
All of this is just baby steps towards our ultimate goal of having his trach removed. And even though the steps are small, they are still the biggest we've taken towards this goal so far. The long term plan is to continue this at night and then in a few months we will have a sleep study. If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good. It will mean so much to us if we are finally able to do that. It will improve the quality of life for him and for us. There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much. One thing I can't wait for him to do is go swimming and splash the water as much as he wants. But the first thing we will do is throw a giant party and you are all invited.
Please pray for us as we go through this process. Pray for John that he will continue to thrive and have good nights. And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad. Pray for Tommy and I, that we will know what is best for him. Pray that we will see the signs if this isn't working for him and we will know the best way to help him. And pray for the doctors as they will be making the ultimate decision for us. Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.
Thanks once again for taking this journey with us. We couldn't make it without your love and support and you will never know how much your encouragement means to us. I hope to post more updates (hopefully all positive) as we continue on this path. And with that, I will leave you with a couple of photos I took of John this week.
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| He sure gets excited about sweet potatoes |
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| Yesterday was a very long day. |
Monday, January 16, 2012
Catching up
So it's been quite a while since I wrote a blog post. I guess that means life has been going pretty well and there isn't a lot of change to talk about. Mostly, I think it means I have just been lazy and haven't taken the time to write. Today seems just as good as any to get back to it.
Mostly, things have been pretty good. We had a great holiday season. Everyone was healthy this year, which is a far cry from last year, so we were able to enjoy time with our family. Santa was good to all of us. John's favorite gift by far was his new swing. We hung it on the swing set outside and his favorite way to pass time is in his swing. He is so much fun to watch. His eyes light up and he gets a huge smile. Of course he got plenty of other new toys, but while inside, he seems just as content to play with the laundry basket. Some times he curls up in a ball and pulls it completely on top of himself. If you walked in the room, you wouldn't know where he was. I guess that is his version of hide and seek.
Santa brought me the new iPhone 4s. Actually, he gave me AT&T gift cards that covered the amount of the phone and my husband went out and got the phone for me. I've been holding onto the 3gs for nearly 3 years and it had gotten so slow that it was almost like using dial up. So I love my new phone and all of the fun things I can do with it.
My husband was also very good to me. He got me the leather jacket I asked him for and he also got an xbox 360 Kinnect. He said it was for me, but I think it's really for both of us. Playing games on it is fun, but so far I have mostly used it for watching netflix. I have gotten hooked on a TV show, and I have been using netflix to catch up from the beginning. So overall I'd say the holidays were a success.
During the Christmas break, our nanny went home to Midland to spend a few weeks with her family. So we were able to utilize the services of our nanny that we had over the summer. Caitlin worked with us for 2 weeks and John had so much fun with her. It was great to see her and catch up with her again and John really enjoyed having his playmate back.
Also, during the holiday, John lost a tooth and I actually pulled it myself. I was so nervous to do it because I didn't want to hurt him, but it was so loose, that it didn't take much effort to pull it. Tommy held his head and arms and I pulled the tooth. Of course, he didn't flinch at all so that made it easier for me. He has the cutest snaggle tooth grin. The dentist told me that the top teeth usually take months to come back in. She said she thinks it's because God really likes to see those snaggle tooth smiles and I think she's right. But I can already see the new tooth starting to surface. The other top tooth is loose too, so pretty soon, he'll be missing both teeth. Maybe that's what he'll ask Santa for next Christmas. Although, I'm pretty sure they will be in by then.
Now that the holidays are over, and Tommy is no longer on vacation, we are back to the grind. John is back in school, which he is still doing well at, and today we got back to OT and PT for the first time in a month. It was good for both of us, since he had the day off of school.
Tommy left Saturday for an overseas trip. He will be gone a week and I have to say that I am already feeling slightly overwhelmed. We didn't have a nanny at all last week, so John and I spent A LOT of quality time together. So with Tommy being gone, and this being a 3 day weekend, we are spending even more quality time together, and I think it's wearing on me. I love my son to pieces, but sometimes I need a break. He really is time consuming. Tommy's dad came Saturday and is staying until tomorrow to give me a little help while he's out of school. While I appreciate the help he's been, I'm still the one doing all of the feeding and changing and most of the lifting, along with cooking and cleaning and laundry and everything else I do on a daily basis. So to say that I'm tired is an understatement. I feel my frustration level rising and I don't really know what to do to bring it back down. I think it will be a big help when he goes back to school tomorrow. I do treasure the time we spend together, but I need a break.
So that is about all for now. I will try and do a better job of keeping up with the blog. I hope everyone had a Merry Christmas and is having a great 2012!
Mostly, things have been pretty good. We had a great holiday season. Everyone was healthy this year, which is a far cry from last year, so we were able to enjoy time with our family. Santa was good to all of us. John's favorite gift by far was his new swing. We hung it on the swing set outside and his favorite way to pass time is in his swing. He is so much fun to watch. His eyes light up and he gets a huge smile. Of course he got plenty of other new toys, but while inside, he seems just as content to play with the laundry basket. Some times he curls up in a ball and pulls it completely on top of himself. If you walked in the room, you wouldn't know where he was. I guess that is his version of hide and seek.
Santa brought me the new iPhone 4s. Actually, he gave me AT&T gift cards that covered the amount of the phone and my husband went out and got the phone for me. I've been holding onto the 3gs for nearly 3 years and it had gotten so slow that it was almost like using dial up. So I love my new phone and all of the fun things I can do with it.
My husband was also very good to me. He got me the leather jacket I asked him for and he also got an xbox 360 Kinnect. He said it was for me, but I think it's really for both of us. Playing games on it is fun, but so far I have mostly used it for watching netflix. I have gotten hooked on a TV show, and I have been using netflix to catch up from the beginning. So overall I'd say the holidays were a success.
During the Christmas break, our nanny went home to Midland to spend a few weeks with her family. So we were able to utilize the services of our nanny that we had over the summer. Caitlin worked with us for 2 weeks and John had so much fun with her. It was great to see her and catch up with her again and John really enjoyed having his playmate back.
Also, during the holiday, John lost a tooth and I actually pulled it myself. I was so nervous to do it because I didn't want to hurt him, but it was so loose, that it didn't take much effort to pull it. Tommy held his head and arms and I pulled the tooth. Of course, he didn't flinch at all so that made it easier for me. He has the cutest snaggle tooth grin. The dentist told me that the top teeth usually take months to come back in. She said she thinks it's because God really likes to see those snaggle tooth smiles and I think she's right. But I can already see the new tooth starting to surface. The other top tooth is loose too, so pretty soon, he'll be missing both teeth. Maybe that's what he'll ask Santa for next Christmas. Although, I'm pretty sure they will be in by then.
Now that the holidays are over, and Tommy is no longer on vacation, we are back to the grind. John is back in school, which he is still doing well at, and today we got back to OT and PT for the first time in a month. It was good for both of us, since he had the day off of school.
Tommy left Saturday for an overseas trip. He will be gone a week and I have to say that I am already feeling slightly overwhelmed. We didn't have a nanny at all last week, so John and I spent A LOT of quality time together. So with Tommy being gone, and this being a 3 day weekend, we are spending even more quality time together, and I think it's wearing on me. I love my son to pieces, but sometimes I need a break. He really is time consuming. Tommy's dad came Saturday and is staying until tomorrow to give me a little help while he's out of school. While I appreciate the help he's been, I'm still the one doing all of the feeding and changing and most of the lifting, along with cooking and cleaning and laundry and everything else I do on a daily basis. So to say that I'm tired is an understatement. I feel my frustration level rising and I don't really know what to do to bring it back down. I think it will be a big help when he goes back to school tomorrow. I do treasure the time we spend together, but I need a break.
So that is about all for now. I will try and do a better job of keeping up with the blog. I hope everyone had a Merry Christmas and is having a great 2012!
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