Last night, we went out to dinner with some of our closest friends to one of our favorite Mexican restaurants. We sat out on the patio so we could enjoy the weather and the atmosphere. The adults sat at one end of the table while the kids sat at the other end. We had great conversation and many, many laughs. John was sitting in his chair next to me, taking in the surroundings and watching all of the people around us. We were finished eating, and the other kids were off getting their faces and arms painted by a lady the restaurant had there. The evening was perfect. It really couldn't get any better, so we thought.
While we were sitting there, a young girl and her mom walked up to John and started talking to him. It was obvious that they knew him, but I did not recognize them. I was sure it must be someone from school that I'm supposed to know, but just couldn't place them. Finally the mom introduced her daughter, Emma, and said that she was in John's second grade class at Shafer. He gets to spend 20 minutes a day in the classroom with other second graders for reading. And word on the street is the kids usually fight over who gets to read to John. According to the mom, Emma says she likes to scoot a little closer to John because he likes to put his hand on her arm and when she's too far away, he has to reach for her. Then the mom told us a story that I will never forget.
At some point during the year, the school had a contest for drawing a picture of the school's mascot, which is a silver knight. I'm not sure what the contest was for. Maybe it was for the cover of the yearbook. Anyway, mom said that Emma came home excited about drawing a picture of a knight. But Emma noticed that all of the other kids were just drawing ordinary knights. Emma thought about it and said that sometimes a knight can be in a wheel chair. So Emma googled a picture of a knight and a picture of a wheel chair and decided that was what she would draw. She had to get help from a friend because she couldn't figure out how to bend the knight's knees and make him fit into the chair. But eventually she figured it out and got her drawing to look the way she wanted. She then titled her picture "John". Emma didn't win the contest and she didn't get her knight on the cover, but she gave something to Tommy and I, and to everyone sitting at our table that none of us will ever forget. She showed compassion for our boy that nobody asked her to show. She touched all of our hearts with that story, and we will never forget the kindness she showed. It was great to meet her and her mom. Mom says that she was so happy to finally meet John because Emma talks about him all of the time.
Not only did this just melt our hearts, but it taught me several things. First of all, I am absolutely sure that John is at the school God wants him to be at. Even with the heartache of having to leave OKE and his teacher, God knew exactly what he was doing, just as he always does. He put our boy in a place where he can be taught, and loved and where he can also touch the hearts of other staff as well as students. Secondly, I learned that those 20 minutes every day that John gets to spend in the regular ed second grade class is very important. No matter how short of a time it seems, it is obviously enough time for John to touch the hearts of his fellow classmates and to build meaningful relationships.
I told Emma and her mom about our Special Buddies program at Shafer and told them that I would love for Emma to be a part of it next year. She is a perfect example of what Special Buddies is all about. Emma said she would love to be in Special Buddies and that she would love to be John's buddy. Hopefully they will end up in the same homeroom next year. I might have to see what I can do about that. Emma's mom took my phone number and she is supposed to text me a picture of the drawing that Emma made. I can't wait to see it!!!
Saturday, June 8, 2013
Friday, May 31, 2013
Never a Dull Moment
I have spoken that phrase many, many times to describe the craziness that is our life. Just when we get into a routine and think things are running smoothly, suddenly they aren't. And it's not usually just one thing. These things tend to happen in groups. There have been many things I've wanted to blog about over the last several weeks, but haven't found either the time or the energy to do so. So I decided to just put it all in one post. So hang on to your hats. Here is a glimpse at what has been going on with us and what to expect in the coming months.
All mom's know that the end of the school year is a complete whirlwind. There's Teacher Appreciation week, end of school parties, award ceremonies and much much more. There is a blog post floating around that adequately explains how hard the end of the year is on moms. If you haven't read it yet, you can do so here. But there was one end of year event that I was looking forward to. It was our Special Buddies party. Being in charge, there was a lot of work that went into organizing and pulling this party together, but with the help of other parents and of course our awesome school counselor, it was so worth it. Throughout the year, teachers and parents took pictures of the kids and their buddies either at other events or in the classroom as they interacted with each other. We took those pictures and compiled a small photo album for each kid. Yes, that was 34 photo albums, plus one for each teacher and for Mr. and Mrs. Shafer, the couple for whom our school is named. This was quite a process of sorting pictures and then putting them in the albums. But I think each kid really liked it. We also had a certificate of participation made for each student that was designed by one of our very talented dads. And each kid got a chance to write a short note to their buddy telling them how happy they were to get to know them this year. And for the grand finale, our counselor made a slide show of many of the pictures and we showed that to everyone there. It was a great party and a great way to say goodbye to our buddies for summer. And let me just say that these kids really bonded with their buddies. The kids chosen to be buddies to our life skills kiddos were fantastic. Not only did they interact with their own buddies, but they interacted with other kids. I have seen pictures of some kids attending parties and hanging out together outside of school. That is what this program is all about. Just because someone isn't like you, doesn't mean you can't be friends with them. I look forward to seeing just what next year will bring with these kids. Here are a few pictures I have with John and his two buddies.
Another event that John and I participated in that was related to Special Buddies was the Cinco Ranch Rotary Camo 5k. No, I did not and probably never will run a 5K. But they also had a 1 mile family walk and that is what we did. Part of the proceeds from this event will go to the Special Buddies programs in Katy. Our school had an incredible turnout of supporters. Most of us participated in the walk, but it was great fun to support this cause together as a school. Here are a few pictures from that event.
The same day as the race, we had John's 8th birthday party. I can't believe my baby is 8. Am I old enough to have an 8 year old? Last year's water party in the backyard was such a huge success, that we decided to do it again. We scaled it back a little, with only one slide instead of two. And instead of Tommy having to spend time cooking burgers and hot dogs, we ordered pizza. I again enlisted "the best neighbor in the whole world" to make the cupcakes, and of course, she didn't disappoint. John and I got to hang out in the pool while the other kids got to play on the slide and the swing set. The weather was cloudy, which was actually perfect for those of us not in the water, but made the pool water a little chilly. I think it was as big of a success as last year. I know we were all worn out when it was over. I realized after that I didn't take one single picture from the party. Fortunately my mom and sister-in-law took a few, so I at least have a few to share.
Yesterday was supposed to be John's Celebration of Learning for 2nd grade. However, John had some tummy trouble this week so he missed school on Tuesday and Thursday and missed his Celebration of Learning.
Our summer is not going to be any more relaxed. We will be very busy through the month of July and into the first week of August. Technically, Wednesday June 5 is the last day of school. It is a half day, but John's last day will be Tuesday. That night he has a sleep study at TCH. I'm not expecting much to come from this sleep study, but it will be interesting to see if he's made any improvement. We won't get home until after 7:00 Wednesday morning and on those days we normally come home, give John a bath to get all of the goo out of his hair, and then he and I usually crash for a couple of hours. The next week is Vacation Bible School. I will be teaching in a 4th grade class and John will be in the Treasure's Department. I will also have Kash and William with me that week. Then the next week will be an interesting one for me.
If you don't know me very well, you might not know that I was born with a heart defect. I had open heart surgery to correct the defect when I was 13 months old, and most of my childhood, I lived a very normal life. As I've gotten older, however, I have begun to develop more issues. Most of them have to do with the electrical side of my heart. Over the last several years, I have been on medication to control some arrhythmia. Over time, the arrhythmia has gotten worse and I have had to take more and more medication to control it. I'm to a point now that I am completely maxed out on the medication I have been taking for the past 3 years, and it's not controlling all of the arrhythmia. My doctor in Houston thought it was time for me to go on a different, heavy duty medication that he is sure will control the arrhythmia, but also can have nasty side effects over time. Some of the things the drug can effect are my liver, lungs, and eyes among other problems. This has always been a possibility, but I've been putting off this drug for a long time. It's kind of a last resort and I wanted to be sure I explored every other option before I went to that drug. So I called up the doctor I had for 13 years, who moved to Ohio 3 years ago. I knew that of any doctor, she knows me best and would be completely honest. If she said this drug was what I needed, then that's what I would have done. But that's not what she said. She thinks there may be a chance that a procedure called an ablation could be a way to get rid of some of the arrhythmia for good. If this works, not only will I not have to go on the nasty drug, but I may be able to get off of some of the drugs I'm currently taking, which could lead to me feeling so much better and having a lot more energy. But the catch is, I have to go to Ohio to do it. So that is what we are going to do. I will leave on June 16 to head to Columbus, Ohio. I will go off of my current meds when I get there. I will see my doctor in clinic one day and she plans to admit me into the hospital on Wednesday of that week. The procedure will take place on Friday, June 21 and if all goes well, I will be able to come home Saturday or Sunday. Tommy is coming with me, so the biggest issue is child care for John. Fortunately, our awesome nanny, Caitlin, has been working for us the past month or so and she has agreed to keep John while we are gone. That will be a big undertaking for her since he won't be in school and she will have to sleep here at night. But if anyone can do it, I know she can.
On July 1, John and I will set out for therapy in Austin. I told you about this in an earlier post. He will be in therapy 3 hours a day, Monday - Friday from July 1 through July 19. We will come home on the weekends, but will be spending 4 nights each week in Austin. I really think this will be very good for him, even though it will be exhausting. I'm sure we will be going to bed early every night and we will be using the weekend to rest up and get ready for the next week. That is going to be a very busy month, but hopefully it will all be worth it in the end.
The last 11 days of July we will spend just hanging out and recuperating from our trip. August 5-9 will be Super Place Camp. This is the 4th year John has been able to attend this camp, and this year it is being held at our church. That will make me much more comfortable having him in a place where we are familiar and with people we know. And I think after that, we are just going to sleep until school starts again. We will need it after everything we will have done.
Please pray for us as we go through these super busy few months. We will all need patience, strength and especially energy. It will be a grueling time, but we will make memories that will last forever. Thank you once again for being our army of support. It means the world to all of us to have your prayers and support.
All mom's know that the end of the school year is a complete whirlwind. There's Teacher Appreciation week, end of school parties, award ceremonies and much much more. There is a blog post floating around that adequately explains how hard the end of the year is on moms. If you haven't read it yet, you can do so here. But there was one end of year event that I was looking forward to. It was our Special Buddies party. Being in charge, there was a lot of work that went into organizing and pulling this party together, but with the help of other parents and of course our awesome school counselor, it was so worth it. Throughout the year, teachers and parents took pictures of the kids and their buddies either at other events or in the classroom as they interacted with each other. We took those pictures and compiled a small photo album for each kid. Yes, that was 34 photo albums, plus one for each teacher and for Mr. and Mrs. Shafer, the couple for whom our school is named. This was quite a process of sorting pictures and then putting them in the albums. But I think each kid really liked it. We also had a certificate of participation made for each student that was designed by one of our very talented dads. And each kid got a chance to write a short note to their buddy telling them how happy they were to get to know them this year. And for the grand finale, our counselor made a slide show of many of the pictures and we showed that to everyone there. It was a great party and a great way to say goodbye to our buddies for summer. And let me just say that these kids really bonded with their buddies. The kids chosen to be buddies to our life skills kiddos were fantastic. Not only did they interact with their own buddies, but they interacted with other kids. I have seen pictures of some kids attending parties and hanging out together outside of school. That is what this program is all about. Just because someone isn't like you, doesn't mean you can't be friends with them. I look forward to seeing just what next year will bring with these kids. Here are a few pictures I have with John and his two buddies.
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| John and Charlie |
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| John and Hannah |
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| Both of his buddies |
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| John and Drew in class |
Another event that John and I participated in that was related to Special Buddies was the Cinco Ranch Rotary Camo 5k. No, I did not and probably never will run a 5K. But they also had a 1 mile family walk and that is what we did. Part of the proceeds from this event will go to the Special Buddies programs in Katy. Our school had an incredible turnout of supporters. Most of us participated in the walk, but it was great fun to support this cause together as a school. Here are a few pictures from that event.
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| Before the race |
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| John with Mr. Shafer |
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| Our Shafer Supporters |
The same day as the race, we had John's 8th birthday party. I can't believe my baby is 8. Am I old enough to have an 8 year old? Last year's water party in the backyard was such a huge success, that we decided to do it again. We scaled it back a little, with only one slide instead of two. And instead of Tommy having to spend time cooking burgers and hot dogs, we ordered pizza. I again enlisted "the best neighbor in the whole world" to make the cupcakes, and of course, she didn't disappoint. John and I got to hang out in the pool while the other kids got to play on the slide and the swing set. The weather was cloudy, which was actually perfect for those of us not in the water, but made the pool water a little chilly. I think it was as big of a success as last year. I know we were all worn out when it was over. I realized after that I didn't take one single picture from the party. Fortunately my mom and sister-in-law took a few, so I at least have a few to share.
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| Fun on the slide |
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| Kash and Reagan |
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| Kash and Reagan |
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| Kids in the pool |
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| John and his buddy Jaden. |
Yesterday was supposed to be John's Celebration of Learning for 2nd grade. However, John had some tummy trouble this week so he missed school on Tuesday and Thursday and missed his Celebration of Learning.
Our summer is not going to be any more relaxed. We will be very busy through the month of July and into the first week of August. Technically, Wednesday June 5 is the last day of school. It is a half day, but John's last day will be Tuesday. That night he has a sleep study at TCH. I'm not expecting much to come from this sleep study, but it will be interesting to see if he's made any improvement. We won't get home until after 7:00 Wednesday morning and on those days we normally come home, give John a bath to get all of the goo out of his hair, and then he and I usually crash for a couple of hours. The next week is Vacation Bible School. I will be teaching in a 4th grade class and John will be in the Treasure's Department. I will also have Kash and William with me that week. Then the next week will be an interesting one for me.
If you don't know me very well, you might not know that I was born with a heart defect. I had open heart surgery to correct the defect when I was 13 months old, and most of my childhood, I lived a very normal life. As I've gotten older, however, I have begun to develop more issues. Most of them have to do with the electrical side of my heart. Over the last several years, I have been on medication to control some arrhythmia. Over time, the arrhythmia has gotten worse and I have had to take more and more medication to control it. I'm to a point now that I am completely maxed out on the medication I have been taking for the past 3 years, and it's not controlling all of the arrhythmia. My doctor in Houston thought it was time for me to go on a different, heavy duty medication that he is sure will control the arrhythmia, but also can have nasty side effects over time. Some of the things the drug can effect are my liver, lungs, and eyes among other problems. This has always been a possibility, but I've been putting off this drug for a long time. It's kind of a last resort and I wanted to be sure I explored every other option before I went to that drug. So I called up the doctor I had for 13 years, who moved to Ohio 3 years ago. I knew that of any doctor, she knows me best and would be completely honest. If she said this drug was what I needed, then that's what I would have done. But that's not what she said. She thinks there may be a chance that a procedure called an ablation could be a way to get rid of some of the arrhythmia for good. If this works, not only will I not have to go on the nasty drug, but I may be able to get off of some of the drugs I'm currently taking, which could lead to me feeling so much better and having a lot more energy. But the catch is, I have to go to Ohio to do it. So that is what we are going to do. I will leave on June 16 to head to Columbus, Ohio. I will go off of my current meds when I get there. I will see my doctor in clinic one day and she plans to admit me into the hospital on Wednesday of that week. The procedure will take place on Friday, June 21 and if all goes well, I will be able to come home Saturday or Sunday. Tommy is coming with me, so the biggest issue is child care for John. Fortunately, our awesome nanny, Caitlin, has been working for us the past month or so and she has agreed to keep John while we are gone. That will be a big undertaking for her since he won't be in school and she will have to sleep here at night. But if anyone can do it, I know she can.
On July 1, John and I will set out for therapy in Austin. I told you about this in an earlier post. He will be in therapy 3 hours a day, Monday - Friday from July 1 through July 19. We will come home on the weekends, but will be spending 4 nights each week in Austin. I really think this will be very good for him, even though it will be exhausting. I'm sure we will be going to bed early every night and we will be using the weekend to rest up and get ready for the next week. That is going to be a very busy month, but hopefully it will all be worth it in the end.
The last 11 days of July we will spend just hanging out and recuperating from our trip. August 5-9 will be Super Place Camp. This is the 4th year John has been able to attend this camp, and this year it is being held at our church. That will make me much more comfortable having him in a place where we are familiar and with people we know. And I think after that, we are just going to sleep until school starts again. We will need it after everything we will have done.
Please pray for us as we go through these super busy few months. We will all need patience, strength and especially energy. It will be a grueling time, but we will make memories that will last forever. Thank you once again for being our army of support. It means the world to all of us to have your prayers and support.
Thursday, April 25, 2013
Secrets of a Special Needs Mom
While browsing through Facebook this morning, like I do every morning, I came across this article that a friend had posted. It's written by Suzanne Perryman, who is a blogger for the Huffington Post. I have read posts like this before, but this one may be the most accurate in describing my feelings. I thought I would share the blog post with you first, and then I'll make my own comments on each point. Hopefully this gives you a little more insight into my life and my feelings.
I am a special needs mom. And I have secrets. Things I don't talk about and other moms don't know -- or maybe they just forgot about along the way. Here are six of them.
6 Secrets Special Needs Moms Know But Won't Tell You
1. Special needs moms are lonely. I yearn for more time with friends and family. I have an authentically positive attitude and most often you see me smiling. I may even look like I have this SuperMom thing down, am super busy and have enough help. But I am lonely. Being a special needs mom doesn't leave me the time to nurture and maintain the relationships I really need. I could get super detailed here about the hands-on caring for my child. (Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus some.) The plus-some includes spreading my mom love around to my other child and my husband, who on a daily basis are put on hold, waiting for my attention. I don't have much time to call or email my friends and even family ... and if they don't call or email me, well then I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I miss the days when I had playgroups with other moms, open-house style, dropping in and drinking coffee at a friend's kitchen table with my child playing nearby.
2. Special needs moms have to work extra hard to preserve their marriages. This work goes along with the high stress of special needs parenting and aims to combat the sky-high divorce rates for special needs families. I put extra pressure on my husband; he is my best friend, and sometimes I expect unrealistic BFF behavior from him at the end of the day (see no. 1). He is my hero: supportive, patient and loving -- and my kids would be totally lost without him. The success of our marriage will affect the health of our children. My husband and I haven't spent a night away from our kids for six years. We "date night" out of the house every few months, for a two-hour sushi date. Our marriage is a priority, so we "steal" our moments when we can.
3. Special needs moms are not easily offended. Despite what our social media status updates say, we are vulnerable, and life messes with us daily. So really, ask what you want to ask and it's OK to start with "I don't really know how to say this, how to ask you...." I am especially touched when someone cares enough to ask me how my child is feeling, or how to include my child in a social gathering, meal or other event, and am happy to collaborate on what will work for us.
4. Special needs moms worry about dying. We worry about our kids getting sick and dying; we worry about our husbands dying and leaving us alone; but most of all we worry a lot under the surface, and especially about being around to care for our children. We watch people we know grieve the loss of their children and try not to think about it. On the upside, we live life fully and don't take it for granted.
5. Special needs moms are fluent in the transforming body language of touch. This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language "spoken" in every home.
6. Special needs moms know to savor the gift of a child saying "I love you." For the longest time I wasn't sure if my daughter Zoe would ever speak the words. When she was a newborn, it was her sighs of contentment as I held her against my breast that told me how much she loved me. When she was a baby, it was that peaceful calm that came over her when I carried her in my arms. The first time Zoe found her words, she was already a little girl, and every time she spoke them I cried. She is 10 now, and her words are even more tender and wise. I leaned into her at bedtime the other night, and as her hand reached up, caressing my cheek, she whispered... "I love you Mom, for taking such good care of me."
1. Special needs moms are lonely. This may be the one point that describes me least. I wouldn't say I'm lonely. I am incredibly blessed to have an amazing group of friends that support me and are always there with a shoulder to cry on when needed. We have a great time together and that allows me to temporarily forget about the craziness that is my life. But the part that I can relate to is feeling like I neglect my husband a little, because I'm so busy taking care of the needs of my son. I'll get more into that in the next point. I also can relate to not staying in touch with family and friends. I sometimes rely on Facebook a little too much to know what's going on in my friends and family's lives. I don't pick up the phone and call nearly as much as I should, and before I know it, a great deal of time has elapsed since I last called. That makes me feel incredibly guilty.
2. Special needs moms have to work extra hard to preserve their marriages. This really hits home for me. Marriage is hard for all of us. If it were easy, there wouldn't be as high of a divorce rate as there is. And when you add a special needs child into the mix, the divorce rate is even higher. I have always been so thankful that God blessed me with an incredible man who is willing to stand by me through the tough times, and there have been some tough times. Not all men would have stuck around through everything we have been through. Not only do I put a lot of stress on myself, but he does as well, probably more than me. He takes his role as provider very seriously and I know the stress wears him down. Add to that my unrealistic expectations of attention, and it puts extra pressure on him. We don't have a lot of time for just us. We do have the occasional date night out, but they are a little harder to come by because we can't just call up the teenage girl across the street and ask her to babysit. We have limited options when it comes to someone who can care for John while we are out. That makes it harder to get away. We go out later than usual because we have to get John in bed before we can leave. Because he's on a ventilator at night, not just anyone can put him to bed. And if I'm being really honest, as much as I love the time with my husband, I am completely exhausted by the time we get home. We have been fortunate to be able to get away for the weekend a total of 4 times in nearly 8 years, and the first time wasn't until he was 6 years old. If it wasn't for my parents' willingness to keep John so we can have 2 nights alone, we wouldn't have been able to. But the thing is, when we do get those times alone, we are so exhausted from our everyday life, that it's hard to just enjoy each other's company. But he is my hero. He is a wonderful husband and father. He works hard to provide for our family so that I can concentrate on our son and his needs. He gives me nights out with my friends when I need one. He makes me feel safe and protected. I can't imagine going through this journey with anyone else by my side and I will work extra hard and do whatever it takes to make sure I always have him next to me.
3. Special needs moms are not easily offended. This is very true for me. I have encountered a lot of people who are afraid to ask me certain questions. I can tell they want to say something but they aren't sure if they should. I've even had the encounters in the elevator at the hospital where kids want to ask a question about John and the mom covers the kid's mouth. The truth is, I'd rather you ask. I want others to know that not everyone is the same. Kids especially need to understand that. If you want to know how something makes me feel, ask. If you want to know details about taking care of my son, ask. I will not be offended. The only time I get offended, is if someone tries to avoid me. And I am especially offended when someone acts like they feel so sorry for me because my son is not a typically developing child. Don't feel sorry for me. God gave him to me for a reason, and I like to think it's because he thinks I'm special enough to do this job. I am blessed beyond words for having him in my life, so there is nothing to feel sorry about.
4. Special needs moms worry about dying. Boy this is so true, especially having a heart defect. On days where I feel too tired to go on, I do it anyway for my son. I see it as my job to take care of him, and I worry all of the time what would happen if I wasn't here to do that. I even worry about getting sick or getting hurt to the extent that it limits my mobility. I have had small glimpses of what it would be like when I have had surgery or been in the hospital and not able to lift him or take care of him. Fortunately my mom was always able to step in and help. But I know she won't be able to do that forever. In my mind, no one can take care of him like I do. I just keep saying to myself that I can't die. I had gotten to the point where I was beginning to be scared to be alone with him in case something happened to my heart. I didn't want to have a heart attack or pass out and leave him here alone until whatever time Tommy came home from work. Since I got my defibrillator, I worry less about being alone with him, but I still worry about dying. The good thing about it is it forces me to take better care of myself. I go to all of my doctor's appointments when I'm supposed to and I usually listen to the advice they give. I need to be better about nutrition and exercise, but let's not get too crazy.
5. Special needs moms are fluent in the transforming body language of touch. Everyone has their own special love language. For some people giving and receiving gifts is their way of showing love. For others, it's doing small acts of kindness, like helping around the house or running errands. For me and for my son, it's physical touch. He is a very tactile person. His vision and hearing aren't normal, so he relies on what he can feel to know what's around him. He is always grabbing and touching. He gives hugs like nobody else, even though sometimes they turn into a headlock or choke hold. I don't know if this has always been my love language or if it's just been since I had him. All it takes with me is a touch on the shoulder, or the hand. An unexpected hug will go a long way with me.
6. Special needs moms know to savor the gift of a child saying "I love you." I get love from my son every day. He will probably never be able to actually say the words "I love you" or any words for that matter. But every morning when I lift him out of bed and carry him to the living room, he wraps his arms around my neck. When I'm getting him dressed and I sit him up to take his shirt off, he wraps his arms around my neck. This is often when that hug becomes a headlock, but I love it. He will look me in the eyes and then lean in and give me a wet, slobbery kiss on the cheek. He's getting heavier so lifting and carrying him is becoming harder and harder. But as long as I'm physically able, I will continue to do that. Because every time I have to carrying him someplace, I get a hug around the neck. That's how he says "I love you, mom." And every single time, it melts my heart.
Monday, April 15, 2013
Summer Therapy
Can you believe it's April and that this school year is almost over? I can't. It seems like it was just a few weeks ago that we were beginning an adventure at a new school, and I wasn't happy about it. But I must say that it has been a good year for John. His new teacher is very supportive and does a great job communicating and taking care of John's needs so that I don't have to worry while he's there. The nurse and nurse assistant have both proven to be quite competent at replacing John's trach, since it has come out several times at school this year. He is learning and making progress towards his goals and most importantly, he loves going to school. I've gotten involved with the Special Buddies program, which in turn makes me more engaged and committed to John's whole school experience. While I still would have liked for him to have stayed with last year's teacher and to see him build on what he accomplished last year, I am very pleased with how this year has turned out.
But with the end of the school year comes summer. Summer can be tough, keeping up with John all day. I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat. I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood. But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.
I told you all about TheraSuit last year when John was supposed to participate in it here in Houston. But the only clinic in Houston who did this therapy, closed the month before he was supposed to start. I was very disappointed at the time, but now realize it was probably for the best. John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully. But this summer, we are not going to do horse therapy since we are doing it throughout the school year. So we will be able to concentrate all of his energy towards the TheraSuit. If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here. If you follow the link, be sure to look at the pictures.
I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate. Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it. But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights. But as I thought more about it, I thought that it may be possible. We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses. I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it. I knew I'd be able to get some sleep on the weekends so I figured I could tough it out. But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there. After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up. So the next step was to contact the clinic and see if they had any openings.
I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon. One was July 1-19 and the second was July 29-August 9. She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted. It was a lengthy application that required a lot of health history. It took a couple of days for me to go over and complete it as accurately as possible. Once I sent it in, I just had to wait. Meanwhile, I knew that even if he was accepted, there was still the cost to consider. It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion. I was just hoping that ours would cover enough. After a week of waiting, I finally got the email I had been waiting for. John was accepted. And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay. I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that. So it turns out, we won't be paying any more out of pocket than we already expected to pay.
It just feels like this is the exact right time for John to participate. I knew there would be a few obstacles to clear in order to make that happen. But as I got further into the process, God just cleared every one of those obstacles out of the way. We still have a few more things to do before we start in July, but they shouldn't be a problem. I am so excited for John to be able to do this. He may not like it at times because it's going to be hard, and he may even cry or pitch a fit. But I know in the long run, this is really going to be best for him. It's going to really strengthen the muscles that need it most as well as help with balance and coordination. I'm so excited to see the difference this could make in his motor skills.
I have just a couple of prayer requests for you to consider. First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there. It would be exponentially better for both of us, if we can both get a good night's sleep each night. Second, pray for John as he goes through the therapy. I know he's going to be exhausted each and every day. I know it's going to be hard and maybe at times uncomfortable. Just pray that he is physically able to tolerate the tough days. Third, pray that this will help us to see major improvements in John's strength and overall motor skills.
We don't have a specific genetic diagnosis that explains all of John's special needs. One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential. With the addition of this therapy this summer, it finally feels like we are doing everything we can. With that being said, pray for us as we await the results of some recent genetic testing. All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John. Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential. And it will be nice just to have a name. Maybe we can meet others with the same diagnosis that we can lean on for support and advice.
Once again, I thank you all for being so faithful with your support and prayers. Without them, we wouldn't be near as put together as we are.
But with the end of the school year comes summer. Summer can be tough, keeping up with John all day. I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat. I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood. But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.
I told you all about TheraSuit last year when John was supposed to participate in it here in Houston. But the only clinic in Houston who did this therapy, closed the month before he was supposed to start. I was very disappointed at the time, but now realize it was probably for the best. John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully. But this summer, we are not going to do horse therapy since we are doing it throughout the school year. So we will be able to concentrate all of his energy towards the TheraSuit. If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here. If you follow the link, be sure to look at the pictures.
I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate. Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it. But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights. But as I thought more about it, I thought that it may be possible. We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses. I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it. I knew I'd be able to get some sleep on the weekends so I figured I could tough it out. But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there. After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up. So the next step was to contact the clinic and see if they had any openings.
I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon. One was July 1-19 and the second was July 29-August 9. She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted. It was a lengthy application that required a lot of health history. It took a couple of days for me to go over and complete it as accurately as possible. Once I sent it in, I just had to wait. Meanwhile, I knew that even if he was accepted, there was still the cost to consider. It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion. I was just hoping that ours would cover enough. After a week of waiting, I finally got the email I had been waiting for. John was accepted. And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay. I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that. So it turns out, we won't be paying any more out of pocket than we already expected to pay.
It just feels like this is the exact right time for John to participate. I knew there would be a few obstacles to clear in order to make that happen. But as I got further into the process, God just cleared every one of those obstacles out of the way. We still have a few more things to do before we start in July, but they shouldn't be a problem. I am so excited for John to be able to do this. He may not like it at times because it's going to be hard, and he may even cry or pitch a fit. But I know in the long run, this is really going to be best for him. It's going to really strengthen the muscles that need it most as well as help with balance and coordination. I'm so excited to see the difference this could make in his motor skills.
I have just a couple of prayer requests for you to consider. First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there. It would be exponentially better for both of us, if we can both get a good night's sleep each night. Second, pray for John as he goes through the therapy. I know he's going to be exhausted each and every day. I know it's going to be hard and maybe at times uncomfortable. Just pray that he is physically able to tolerate the tough days. Third, pray that this will help us to see major improvements in John's strength and overall motor skills.
We don't have a specific genetic diagnosis that explains all of John's special needs. One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential. With the addition of this therapy this summer, it finally feels like we are doing everything we can. With that being said, pray for us as we await the results of some recent genetic testing. All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John. Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential. And it will be nice just to have a name. Maybe we can meet others with the same diagnosis that we can lean on for support and advice.
Once again, I thank you all for being so faithful with your support and prayers. Without them, we wouldn't be near as put together as we are.
Monday, April 1, 2013
Easter 2013
Holidays are special for every family. Time spent with those we love, often times those we haven't seen in a while, is what makes it special. When you ask people what their favorite holiday is, often times you'll hear them say Christmas or Thanksgiving. But for me, in the last several years, Easter has become my favorite holiday. The most important part of Easter is remembering what Christ did for us on the cross. The sacrifice he made is the greatest gift we could ever be given. I also love Easter because of the newness of spring. All the old fades away, and new birth is beginning. The colors are pretty and the temperatures are usually perfect, with the exception of course of a few odd years where we had freezing rain. Also, it's a great time to gather with family, without the pressures of shopping for everyone.
I don't know exactly how long ago this tradition started, but several years ago, our family began gathering at my parents' house the weekend of Easter. The highlight of the weekend is boiling crawfish and shrimp on Saturday afternoon. We usually have a lot of extended family around on that day. My brother, Jimmie, my dad and Tommy usually man the crawfish pot while the rest of us fill eggs and hide them for the kids. We use loose change and candy to put inside the plastic eggs and the kids nearly kill themselves trying to find them all. Once we think they have all been found, we end up hiding the empty eggs again, just to keep them occupied. The toughest part of it is keeping the kids inside the house where they can't peek while we hide. Sunday brings us all together at church, where every year the Kinder Bible Church choir performs their Easter musical. The choir is led by my mom and my dad is a member as well. After church, we scurry home to finish putting together lunch, which is always one of dad's world famous roast. The type of roast is different all the time, but without fail, it is always delicious. Mom sets a beautiful table, and we all squeeze around it and enjoy each other's company along with the delicious food. But before everyone gets undressed, we take turns in front of the fireplace taking family pictures. There are pictures of the individual families, the grandkids together and then the whole group. It's usually a rush to get them all taken before someone has enough and goes to change.
This year was much the same, except we ended up not hiding the eggs. There were fewer people there this year and only a couple of kids. They were pretty occupied helping with the crawfish and playing in the yard, and the adults just didn't get around to it. But we still really enjoyed ourselves. The weather was perfect and we sat out on the patio all day, enjoying the sunshine and the conversations. It was very relaxing and I loved every minute of it. John enjoyed just being outside all day. He is an outdoorsy boy, so it was a treat for him to be able to sit outside all day without it being too hot or cold and without the sun beating down on us. Sunday, we went to church and the choir did a great job. We came home and took a few pictures, not as many as normal, and then we threw the rest of lunch together. And instead of setting a pretty table and squeezing around it, we decided to keep it as simple as possible. We served lunch on paper plates and then all went out to the outdoor kitchen and sat around the table in there. I kind of liked bucking tradition, but the most important thing was that we were all together. Jason couldn't make it home this year and we missed him.
We drove home in a pouring rainstorm yesterday. Tommy hates driving in the rain and I'm pretty sure that is the slowest he has ever driven between Kinder and Katy in his entire life. What typically takes us 3 hours, took us nearly 4. We were all miserable and couldn't wait to get out of the car. And our trip ended just like every other road trip. We pulled into the driveway and John started giggling. I guess he is so happy to get out of the car and not be strapped into a seat that he can't help but express his pure delight. This time he started getting excited as soon as we turned onto Fry Rd, 2.5 miles from our house.
Here are some of the pictures I took from the weekend.
I don't know exactly how long ago this tradition started, but several years ago, our family began gathering at my parents' house the weekend of Easter. The highlight of the weekend is boiling crawfish and shrimp on Saturday afternoon. We usually have a lot of extended family around on that day. My brother, Jimmie, my dad and Tommy usually man the crawfish pot while the rest of us fill eggs and hide them for the kids. We use loose change and candy to put inside the plastic eggs and the kids nearly kill themselves trying to find them all. Once we think they have all been found, we end up hiding the empty eggs again, just to keep them occupied. The toughest part of it is keeping the kids inside the house where they can't peek while we hide. Sunday brings us all together at church, where every year the Kinder Bible Church choir performs their Easter musical. The choir is led by my mom and my dad is a member as well. After church, we scurry home to finish putting together lunch, which is always one of dad's world famous roast. The type of roast is different all the time, but without fail, it is always delicious. Mom sets a beautiful table, and we all squeeze around it and enjoy each other's company along with the delicious food. But before everyone gets undressed, we take turns in front of the fireplace taking family pictures. There are pictures of the individual families, the grandkids together and then the whole group. It's usually a rush to get them all taken before someone has enough and goes to change.
This year was much the same, except we ended up not hiding the eggs. There were fewer people there this year and only a couple of kids. They were pretty occupied helping with the crawfish and playing in the yard, and the adults just didn't get around to it. But we still really enjoyed ourselves. The weather was perfect and we sat out on the patio all day, enjoying the sunshine and the conversations. It was very relaxing and I loved every minute of it. John enjoyed just being outside all day. He is an outdoorsy boy, so it was a treat for him to be able to sit outside all day without it being too hot or cold and without the sun beating down on us. Sunday, we went to church and the choir did a great job. We came home and took a few pictures, not as many as normal, and then we threw the rest of lunch together. And instead of setting a pretty table and squeezing around it, we decided to keep it as simple as possible. We served lunch on paper plates and then all went out to the outdoor kitchen and sat around the table in there. I kind of liked bucking tradition, but the most important thing was that we were all together. Jason couldn't make it home this year and we missed him.
We drove home in a pouring rainstorm yesterday. Tommy hates driving in the rain and I'm pretty sure that is the slowest he has ever driven between Kinder and Katy in his entire life. What typically takes us 3 hours, took us nearly 4. We were all miserable and couldn't wait to get out of the car. And our trip ended just like every other road trip. We pulled into the driveway and John started giggling. I guess he is so happy to get out of the car and not be strapped into a seat that he can't help but express his pure delight. This time he started getting excited as soon as we turned onto Fry Rd, 2.5 miles from our house.
Here are some of the pictures I took from the weekend.
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| Fuel for the trip. |
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| Reagan's cute dress |
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| Beautiful view from the patio |
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| Easter in the Boot |
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| With my big Bubba |
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| My love |
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| She has my eyes |
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| So does he |
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| Easter Bunny loot |
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| Reagan's pretty dress |
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| My Family |
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| Jimmie and Chrystal |
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| Mayes Family |
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| Pit Stop in the rain |
Monday, March 4, 2013
Step by Step
In our world, progress comes in spells. John will suddenly start doing several new things all within a matter of days of each other. Usually these are big new things. Then he'll go a while, usually a long while, kind of on cruise control. I'm sure he's still making progress, but the progress is so subtle that we don't typically realize it until it turns into something big. Of course this weekend was no different.
Sunday morning, we were milling around the house, about to get ready for church. John was playing in the game room I think and I needed him in the living room to get him dressed. I got him to a standing position, and I was going to walk him into the living room. Normally, when he walks, it's while holding both of my hands and me walking behind him. When he walks with daddy, he's still holding both hands but daddy is usually standing in front of him and walking backwards as John walks forward. I find that John does more of the work on his own if I'm standing behind him, so that is how I like to do it. This time however, he started walking and was only holding one of my hands. Now I've tried this before, but he's usually too scared to not hold both hands and we normally only make it a couple of steps before he falls. This time, however, he took off. He was walking with only one of my hands for balance and he was moving fast. I think partially he had somewhere he wanted to be and partially he was trying to get across the room so he could grab on to something with his other hand. I was very impressed though, both in his confidence and his balance. He was doing most of the work himself. I was just giving him that little extra balance that he needed.
That same afternoon, we went back to the church. Tommy had a meeting and we decided to wait for him so we could go get dinner after. At our church, there is a little indoor playground that is used for the preschool kids. So while Tommy was in his meeting, John and I went in there to play. They have a few stationary places that John could stand at and kind of chill. I expected him to crawl around the floor some and play with a few of the toys. I was sitting nearby looking at my phone when I suddenly noticed that he was standing on the first step of a small bridge that sits in the middle of the room. I watched him climb two more steps to the top of the bridge and I was just amazed that he did that on his own. I did manage to get video of him climbing the steps. So then we went out into the main area and walked over to the stair case. He grabbed onto the banister with one hand and with the other hand, he held onto me. And he proceeded to climb the whole flight of stairs. We tried coming down, but that was just a little more difficult. After he did all of this, he was wiped out. He got his exercise in for the day. So now we are hitting up our handy neighbor to build him something like that to have at home. That would be great exercise and great therapy for him. Maybe we are on our way to walking after all.
He has also been making some progress with his feeding. His therapist is able to get him to chew on a few different foods and even has gotten him to suck on a straw a few times. This progress is slower than the rest, but it is progress.
I can't tell you how proud I am of my little guy. I know I've talked about this before, but I take for granted all of the everything things that I am able to do, like walking, and eating, and talking. He struggles so much to do any of those things, but he never gives up. He is very persistent. I see that at home when he is playing with his toys. If he wants something a certain way, he keeps at it until he gets it the way he wants it. He is motivated to walk, which is the first step. If I can keep him focused when he works on it, he may come along even faster. And I think our horse riding is beginning to make a difference. It has increased his upper body strength and trunk control, and I think he's beginning to feel the gait of the horse and put it to good use. Also, when he gets on his horse, they have him stepping up on a step before climbing onto the horse. Obvious that one step every week, has made an impression on him and has encouraged him to try more than one step at a time.
Sunday morning, we were milling around the house, about to get ready for church. John was playing in the game room I think and I needed him in the living room to get him dressed. I got him to a standing position, and I was going to walk him into the living room. Normally, when he walks, it's while holding both of my hands and me walking behind him. When he walks with daddy, he's still holding both hands but daddy is usually standing in front of him and walking backwards as John walks forward. I find that John does more of the work on his own if I'm standing behind him, so that is how I like to do it. This time however, he started walking and was only holding one of my hands. Now I've tried this before, but he's usually too scared to not hold both hands and we normally only make it a couple of steps before he falls. This time, however, he took off. He was walking with only one of my hands for balance and he was moving fast. I think partially he had somewhere he wanted to be and partially he was trying to get across the room so he could grab on to something with his other hand. I was very impressed though, both in his confidence and his balance. He was doing most of the work himself. I was just giving him that little extra balance that he needed.
That same afternoon, we went back to the church. Tommy had a meeting and we decided to wait for him so we could go get dinner after. At our church, there is a little indoor playground that is used for the preschool kids. So while Tommy was in his meeting, John and I went in there to play. They have a few stationary places that John could stand at and kind of chill. I expected him to crawl around the floor some and play with a few of the toys. I was sitting nearby looking at my phone when I suddenly noticed that he was standing on the first step of a small bridge that sits in the middle of the room. I watched him climb two more steps to the top of the bridge and I was just amazed that he did that on his own. I did manage to get video of him climbing the steps. So then we went out into the main area and walked over to the stair case. He grabbed onto the banister with one hand and with the other hand, he held onto me. And he proceeded to climb the whole flight of stairs. We tried coming down, but that was just a little more difficult. After he did all of this, he was wiped out. He got his exercise in for the day. So now we are hitting up our handy neighbor to build him something like that to have at home. That would be great exercise and great therapy for him. Maybe we are on our way to walking after all.
He has also been making some progress with his feeding. His therapist is able to get him to chew on a few different foods and even has gotten him to suck on a straw a few times. This progress is slower than the rest, but it is progress.
I can't tell you how proud I am of my little guy. I know I've talked about this before, but I take for granted all of the everything things that I am able to do, like walking, and eating, and talking. He struggles so much to do any of those things, but he never gives up. He is very persistent. I see that at home when he is playing with his toys. If he wants something a certain way, he keeps at it until he gets it the way he wants it. He is motivated to walk, which is the first step. If I can keep him focused when he works on it, he may come along even faster. And I think our horse riding is beginning to make a difference. It has increased his upper body strength and trunk control, and I think he's beginning to feel the gait of the horse and put it to good use. Also, when he gets on his horse, they have him stepping up on a step before climbing onto the horse. Obvious that one step every week, has made an impression on him and has encouraged him to try more than one step at a time.
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| This shirt sums up my persistent little guy. |
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| Standing at the top. |
Thursday, February 7, 2013
I'm back...
...Well, maybe. I knew it had been a while since I last blogged but I had no idea it had been 3 months. I sort of felt like there really wasn't much to write about. We have been trudging along through everyday life. Nothing new or excited has really happened. But, if I take some of the smaller things and put them together, then maybe I would have at least one good post in me. So here is what's been going on.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
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| Look how tall I've gotten |
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| My new trick |
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| Me and Ms. Caitlin |
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| Two peas in a pod |
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| Mommy's two handsome dinner dates |
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