This morning, John had an appointment so he didn't go to school first thing. After his appointment ended, I took him to school. Today, they were having something they call Super Specials. This is done every so often for about 3 hours. The kids rotate through PE, Library time and other things in order to give the teachers extra time to plan. They use parents to come in as volunteers to help with kids while the teachers are planning. I told John's teacher that when I dropped him off, I would stick around and help out with his class. So when I got to school, I checked John in and walked him back to meet his class.
They were actually in the motor lab, which is just a room in the school that has things like trampolines and balance beams for the life skills kiddos to work on their motor skills. I was going to take him out of his chair so he could play, but it was time for them to go back to class. So one of the teachers ran down to the class and got his walker so that he could at least walk back to class.
At first, he didn't seem like he wanted to leave motor lab, since he didn't get a chance to play. But he was so happy to be out of his chair and in his walker. As they started back to the classroom, I pushed his chair and stayed back close to John. He likes to stop every time he comes to a window or a picture on the wall. So it takes him a little while to get where he's going because he is a nosey rosy. But in the process, I got to observe something that really made me smile.
As John was taking his time walking down the hall, there was a Kindergarten class with their teacher walking in a line behind him. It was obvious that they were taking their time and waiting for John to get where he was going. Of course being mom, I was trying to hurry him along so that he didn't hold them up any more. But instead of being impatient, the teacher (whom I do not know) was patiently walking behind and cheering him on with words of encouragement. Another teacher (whom I also do not know) walked by in the hall and commented on how well he was walking. It was not lost on me that both of these teachers, know him by name. They have never had him in a class, but they still know his name. And they were both genuinely happy to see him walking and how well he was doing. Of course that huge smile on his face may have something to do with it.
It makes me very happy and proud to know that my son attends a school where the whole staff takes an interest in him enough to know his name and to take the time to encourage him when he's working on walking. Even when he may be in their way.
His teachers work on his walking every day. Yesterday, she sent me an email with this story.
Everyday, when they go to motor lab, they put John in his walker and have him walk down there and walk back. Sometimes, they take him out just for a walk. When they go for a walk, they walk in the opposite direction than they do when going to motor lab. Yesterday, they were going for a walk and for whatever reason they went the same direction they usually go to motor lab. When they got to the door of the motor lab, John came to a stop and would not walk any further. She said she could not figure out why he wouldn't keep walking. Then it dawned on her. He wanted to go into motor lab. That's usually where he goes when he walks in that direction and he knew it. So he wasn't going any further until he was able to go into motor lab. So they did. That crazy boy sure knows what he wants and is trying to find ways to tell us.
Which brings me to this thought; We always say that John can't really communicate with us. Sure we know when he's happy and when he's not and we've learned a few of his other small cues to know when he's tired or even hungry, but as far as letting us know what he wants, we haven't made that connection yet. But I think he is communicating with us. He may not be able to use words or even sign language, but he has his ways of telling us what he wants, like stopping at motor lab and not continuing until he could go in. We just have to listen more closely in order to understand what he's trying to tell us.
His teacher told me on meet the teacher night that it's her goal for him to walk out of the building on his last day of 5th grade. That's just a little more than a year and a half away. I don't know if John will be able to walk on his own by then or not, but I do know this. Whether he walks out of school, or leaves in his wheelchair, he will do it with a smile on his face.
Wednesday, October 8, 2014
Friday, August 8, 2014
Lucky #16?
Most of you know by now that part of John's trach journey is that he has a sleep study once a year. In the early days, it was more like 2 or 3 times a year, but for the last few years, it has only been annually. We usually get them done in the summer because when we get home the next day, he is in no shape to go to school. Although it's called a SLEEP Study, not much sleep is had by either of us.
This year's study was scheduled for July 22. This happened to be the very next Tuesday after we got home from Austin. Although I wasn't really mentally prepared for it, I knew it needed to be done.
Two years ago, we went into the sleep study thinking this was going to be it. This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach). For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well. We thought if that was the case, surely he was ready to have the trach out. After the study, we got the results back and it wasn't exactly what we thought. We were right in the fact that his apnea was at an acceptable level. He had gone from having hundreds of apnea events per hour to having less than 20 per hour. However, a new problem had arisen. They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps. This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs. So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping. We felt like it was a huge setback, but obviously we want to keep his organs healthy.
Last year's study showed pretty much the same thing, so we went into this one not expecting any different. Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital. We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound. After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night. While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was. We both were thinking it was #18. We asked the tech when she brought us back to the room and she said it was #16. Would this be lucky #16?
Here are a couple of photos of John attached to all of the wires. We had his hair cut short before hand to make it easier to attach and wash clean after.
This year's study was scheduled for July 22. This happened to be the very next Tuesday after we got home from Austin. Although I wasn't really mentally prepared for it, I knew it needed to be done.
Two years ago, we went into the sleep study thinking this was going to be it. This was going to be the time when they tell us his apnea is acceptable and we can start the process of decannulation (removing the trach). For the 6 months prior to the sleep study, John had been sleeping without his ventilator and without oxygen and had done quite well. We thought if that was the case, surely he was ready to have the trach out. After the study, we got the results back and it wasn't exactly what we thought. We were right in the fact that his apnea was at an acceptable level. He had gone from having hundreds of apnea events per hour to having less than 20 per hour. However, a new problem had arisen. They discovered that because he is sort of a shallow breather at night, he doesn't take deep enough breaths to expel enough Carbon Dioxide when he sleeps. This may not be significant in the short term, but over time, the increased CO2 can cause damage to major organs. So not only was he not ready to remove the trach, we had to put him back on the ventilator while sleeping. We felt like it was a huge setback, but obviously we want to keep his organs healthy.
Last year's study showed pretty much the same thing, so we went into this one not expecting any different. Our process on Sleep Study days is that John and I meet Tommy for dinner between 5:00 and 5:30 before heading to the hospital. We go up to the sleep center at 6:30 and they begin the process of getting him all wired for sound. After we get him set up and in bed, Tommy leaves and goes home and I stay at the hospital for the night. While we were waiting for the tech to come and get us, Tommy and I were trying to guess which number sleep study this was. We both were thinking it was #18. We asked the tech when she brought us back to the room and she said it was #16. Would this be lucky #16?
Here are a couple of photos of John attached to all of the wires. We had his hair cut short before hand to make it easier to attach and wash clean after.
We finally got settled in and got the study started. John did not sleep well that night, even worse than he normally does. We got up in the morning, detached him from everything and I took him home. I gave him a good bath to wash all of the goop off of him, fed him breakfast and then he and I took a nap. I woke up after 2 hours because I had somewhere to be but John slept for 4 hours. He obviously did not get enough sleep during the night.
A week later, we had an appointment with his Pulmonologist and were looking forward to hearing the results. She came in with good news and not so good news.
First, the not so good news. This study showed that his CO2 level was in the acceptable range all night, (yay) but his apnea was worse this time than it had been the last two times. He had something like 55 events per hour. While it's still significantly better than it used to be, it was higher than it had been in past studies. There was some obstructive apnea, which means that there is something in his airway that obstructs the flow of air, but there was a significant amount of central apnea, which means that his brain is just not telling him to breath. Obstructive apnea can be fixed but central apnea cannot be fixed. We discussed the possibility of using a CPAP mask to help him breath instead of the trach, but I know my child. He will not keep that thing on all night and I will be up and down all night putting it back in place. I told her that for us, that was not an option.
Now onto the better news. She began to discuss the possibility that the trach itself could be causing the obstructive apnea. If the trach wasn't there, all of the obstructive apnea might go away. And she said it's possible that the obstruction of the trach could be causing some of the central. Either way, we really won't know as long as the trach remains in place. So we made a plan. In 6 months we will go back to see her. Then when it turns to spring and we are out of cold and flu season, we would go ahead and take the trach out and give it some time to see how he does. After a certain amount of time passes, we will repeat a sleep study and see how it looks. If he's doing fine, then we will be free of the trach. If he continues to struggle, we will first try the CPAP mask and see how he does. If that doesn't work for us, then we may have to reinsert the trach. Obviously we don't want to have to do that as that will involve surgery, but we all kind of feel like we will never know until we try. I really feel like he will mostly be fine without the trach but there are two areas of concern. If he continues to have the apnea, he will not get a good night's sleep and that can affect his developmental progress. It also can put more pressure on his heart, over time causing it to begin to fail. And if he continues to not expel CO2, then it can, over time, affect his organs.
The last thing we need to do before we make this decision final is consult with the ENT. We have an appointment with her on September 10. We will ask her what her opinion is of having to reinsert the trach should it come to that. There may be scar tissue built up that would make it hard to do. Once we get the green light from her, then we will be good to go.
Please pray with us over the next 6 months that God will make his plan for John clear to us. Pray that John continues to thrive like he is now and that his development continues to improve. And pray for us as we make these big decisions. We want to do what's best for John, even if that means he keeps his trach for the rest of his life. I will keep you all posted as we get more information.
Thursday, August 7, 2014
Summer Fun
Another summer has come and is now almost over. It's been a busy one, although thankfully not as busy nor as stressful as last summer was. We are a little more than 2 weeks away from the start of 4th grade. 4TH GRADE!!!! I can't believe it. I may have said this before but I'm struggling with the idea of my baby being a 4th grader. 3rd grade doesn't sound so bad. It still sounds like lower elementary. But 4TH GRADE?!? That is just one step from 5th grade and 2 steps from Junior High. I'm definitely not ready for Junior High. I taught Junior High. I know what goes on with Junior High kids. So I'm begging that time please slow down, just a little, so I can enjoy a little more time with my elementary baby!
Tommy and I took a much needed vacation the last week of May. We have gone away for the weekend a total of 4 times since JT was born, only once was out of Texas and that was to Louisiana. We haven't been on an actual extended vacation since our trip to London and Paris when I was just pregnant. That was 10 years ago. So we decided it was time to spend more than 2 nights away. And it needed to be far away. So after months of planning and arranging child care for John, 13 pages of instructions later, we left on Memorial Day for 5 days in Cancun. John was, of course, in good hands with my mom, Tommy's brother, Jimmy, and his after school nanny, Haley. Also, my brother and Sister-in-law were only about 3 miles away just in case. We purposefully planned the trip while John was still in school so it would be easier on those taking care of him.
The week started off a little rough. When we landed in Cancun and I turned my phone on, I had 4 emails from the school that they were under a Tornado warning and they were sheltering in place. They would not be dismissing school until the warning was lifted. So that resulted in a set of phone calls home to make sure mom knew he would be late coming home from school and then again to make sure he got home safely. He was home almost an hour later than usual. Then by that night, the runny nose he had when we left had turned into an infection. That meant more phone calls home to tell mom where to take him to get the meds he needed. After the first day and a half, we were finally able to relax and not worry about everything going on at home. I knew he was in good hands and would be well cared for.
Since neither Tommy nor I are particularly beach people (we can't stand sand everywhere) we pretty much stayed in the pool the entire time. We slept late, got breakfast, went to the pool, ate lunch in the pool, hung out in the pool some more before finally getting out late afternoon to shower and change for dinner. We spent most evenings after dinner at the sports bar in the resort, where we met a nice couple from South Dakota who had just gotten engaged. We only ventured away from the resort twice, both times in the same day. On Wednesday, we took the shuttle over to a sister resort to spend the day at their pool. This resort was probably 3 times as big as ours and the pool area was amazing. We even got a little adventurous and decided to try our hand at body surfing on their "Flow Rider." That was comical to say the least. When we got back to our resort, we showered and changed and took a cab to a local restaurant that was recommended by a friend. It was very nice and the food was delicious. We spent Thursday at the pool again and then flew home on Friday. Of course, it wouldn't be our style of vacation if I didn't come home sick. I ended up in Urgent Care the next day with yet another sinus infection. It was a great trip and great time of rest. We are already planning another weekend get-away for Tommy's birthday
School ended officially on June 5th. However, the end of the year was beginning to get rough and JT was exhausted. I was getting calls from school everyday to come and pick him up because he was sick. So I made an executive decision that he was done. I checked him out on Monday morning and told them he would be sick the rest of the week. It was a really good decision. We both needed the rest.
The very next week in June was Vacation Bible School at Tallowood. Although we no longer attend church there, it was a must for JT to attend their Bible School. It was great to take him back there everyday. It was almost as if we had never left. He had a great time and I enjoyed seeing old friends each day when I dropped him off and picked him up. Of course this meant that I spent the mornings that week at Starbucks. That is a great place for people watching and I made friends with a few elderly folks that apparently go there every morning for breakfast and coffee and to read the paper. The rest of June was fairly uneventful. Of course we were resting up and preparing ourselves for 3 weeks of Therasuit Therapy in July.
On June 30 (Tommy and my 13th wedding anniversary), JT, Jennifer and I headed back to Austin for 3 weeks of Therasuit Therapy. If you remember from last year, it was not the best experience and it ended with JT in the ER, followed by 3 nights in the hospital a couple of weeks later. But after some time to recover and a little bit better planning, I was sure we could do it again and make it a much more positive experience. The most important change I made was renting a house instead of doing a hotel stay. The hotel was terrible last year and I figured with a little more space and privacy, the house would serve us much better. And it did. It still had it's quirks and issues, but over all it turned out much better than the hotel. But of course it wouldn't be right if we didn't have a little drama. We drove in on the morning of June 30. His first day of therapy was that day at 2:00. We got to the house around 11:30 and upon trying to turn into the driveway, my "Low Ridin' Swagger Wagon" got stuck. There was a section of gravel in the driveway and I guess my wheel hit it just right. I don't know if it was because the car was weighted down or what, but the more I tried to get out, the bigger hole I dug. I had to call a tow truck to come and get me out. Thankfully they did easily and we were on time for our first day of therapy.
Therapy itself went quite well. JT worked extremely hard. He had a different PT than last year, but the same OT. It was nice to get the OT's perspective on how much stronger he had gotten since last summer. Those ladies works just as hard as JT did. He is not the easiest of kids to work with because he is pretty strong. Lots of things turned into a wrestling match between them. I have to hand it to them. They were persistent and gave JT exactly what he needed. I would have given up 10 minutes in each day, but they stuck it out the entire 3 hours. I know they were exhausted by the end of each day. I learned that his abs and side muscles are already extremely strong and this causes him to lean forward and sideways often. They worked really hard with activities to strengthen the upper back and neck muscles to get him more upright. I didn't realize this but the more he hunches forward, the greater chance he has for developing scoliosis. We definitely don't want that. You could tell by the end of each week, he was exhausted and needed a break. So the weekends were always a welcome sight.
We came home the first weekend since it was July 4th. It was nice to sleep in my bed for a few nights. The second weekend, we decided to stay in Austin and let Tommy come visit us. That is another change we made from last year. While I missed sleeping in my bed on the weekends, it was definitely nice to not have to pack everything up each weekend. We were also able to spend a lot of time with our friends Chad, Kim and Blake. If you don't know, Blake and JT were NICU buddies. We have kept in touch with their family ever since and always enjoy spending time with them. Kim always takes good care of us while we are there.
JT was able to finish his therapy this year. Last year he got sick and missed the last 3 days. This year we made it all the way to the end. To celebrate, I took him to Dairy Queen where I discovered his affection for hot fudge sundaes. We packed up and headed home Saturday morning and I was so happy to be in my bed. While the queen bed we slept in this year was far better than the sofa bed Jennifer and I shared last year, it still did not compare to my own bed. And of course it was great to be sleeping next to my adorable, snoring husband.
I made a cute little slideshow of our time in therapy. It gives a pretty broad idea of the things he worked on and you can see he had a smile on his face the whole time. Hope you enjoy it.
As I mentioned earlier, we got to spend a lot of time with Kim, Chad and Blake. Here are a few pics of us together.
This week John is doing Super Place Camp. This is the same camp he does this week each year. It's at First Baptist Church of Houston, which is kind of a drive from our house. The good thing is that the church has everything I could possibly need, coffee, wi-fi, fitness center and a cafe. And yes, I have actually used the fitness center this week. They gave the parents of the campers a 2 week pass to use it.
The rest of the summer we will be in survival mode, trying to stay occupied until school starts again.
Tommy and I took a much needed vacation the last week of May. We have gone away for the weekend a total of 4 times since JT was born, only once was out of Texas and that was to Louisiana. We haven't been on an actual extended vacation since our trip to London and Paris when I was just pregnant. That was 10 years ago. So we decided it was time to spend more than 2 nights away. And it needed to be far away. So after months of planning and arranging child care for John, 13 pages of instructions later, we left on Memorial Day for 5 days in Cancun. John was, of course, in good hands with my mom, Tommy's brother, Jimmy, and his after school nanny, Haley. Also, my brother and Sister-in-law were only about 3 miles away just in case. We purposefully planned the trip while John was still in school so it would be easier on those taking care of him.
The week started off a little rough. When we landed in Cancun and I turned my phone on, I had 4 emails from the school that they were under a Tornado warning and they were sheltering in place. They would not be dismissing school until the warning was lifted. So that resulted in a set of phone calls home to make sure mom knew he would be late coming home from school and then again to make sure he got home safely. He was home almost an hour later than usual. Then by that night, the runny nose he had when we left had turned into an infection. That meant more phone calls home to tell mom where to take him to get the meds he needed. After the first day and a half, we were finally able to relax and not worry about everything going on at home. I knew he was in good hands and would be well cared for.
Since neither Tommy nor I are particularly beach people (we can't stand sand everywhere) we pretty much stayed in the pool the entire time. We slept late, got breakfast, went to the pool, ate lunch in the pool, hung out in the pool some more before finally getting out late afternoon to shower and change for dinner. We spent most evenings after dinner at the sports bar in the resort, where we met a nice couple from South Dakota who had just gotten engaged. We only ventured away from the resort twice, both times in the same day. On Wednesday, we took the shuttle over to a sister resort to spend the day at their pool. This resort was probably 3 times as big as ours and the pool area was amazing. We even got a little adventurous and decided to try our hand at body surfing on their "Flow Rider." That was comical to say the least. When we got back to our resort, we showered and changed and took a cab to a local restaurant that was recommended by a friend. It was very nice and the food was delicious. We spent Thursday at the pool again and then flew home on Friday. Of course, it wouldn't be our style of vacation if I didn't come home sick. I ended up in Urgent Care the next day with yet another sinus infection. It was a great trip and great time of rest. We are already planning another weekend get-away for Tommy's birthday
School ended officially on June 5th. However, the end of the year was beginning to get rough and JT was exhausted. I was getting calls from school everyday to come and pick him up because he was sick. So I made an executive decision that he was done. I checked him out on Monday morning and told them he would be sick the rest of the week. It was a really good decision. We both needed the rest.
The very next week in June was Vacation Bible School at Tallowood. Although we no longer attend church there, it was a must for JT to attend their Bible School. It was great to take him back there everyday. It was almost as if we had never left. He had a great time and I enjoyed seeing old friends each day when I dropped him off and picked him up. Of course this meant that I spent the mornings that week at Starbucks. That is a great place for people watching and I made friends with a few elderly folks that apparently go there every morning for breakfast and coffee and to read the paper. The rest of June was fairly uneventful. Of course we were resting up and preparing ourselves for 3 weeks of Therasuit Therapy in July.
On June 30 (Tommy and my 13th wedding anniversary), JT, Jennifer and I headed back to Austin for 3 weeks of Therasuit Therapy. If you remember from last year, it was not the best experience and it ended with JT in the ER, followed by 3 nights in the hospital a couple of weeks later. But after some time to recover and a little bit better planning, I was sure we could do it again and make it a much more positive experience. The most important change I made was renting a house instead of doing a hotel stay. The hotel was terrible last year and I figured with a little more space and privacy, the house would serve us much better. And it did. It still had it's quirks and issues, but over all it turned out much better than the hotel. But of course it wouldn't be right if we didn't have a little drama. We drove in on the morning of June 30. His first day of therapy was that day at 2:00. We got to the house around 11:30 and upon trying to turn into the driveway, my "Low Ridin' Swagger Wagon" got stuck. There was a section of gravel in the driveway and I guess my wheel hit it just right. I don't know if it was because the car was weighted down or what, but the more I tried to get out, the bigger hole I dug. I had to call a tow truck to come and get me out. Thankfully they did easily and we were on time for our first day of therapy.
Therapy itself went quite well. JT worked extremely hard. He had a different PT than last year, but the same OT. It was nice to get the OT's perspective on how much stronger he had gotten since last summer. Those ladies works just as hard as JT did. He is not the easiest of kids to work with because he is pretty strong. Lots of things turned into a wrestling match between them. I have to hand it to them. They were persistent and gave JT exactly what he needed. I would have given up 10 minutes in each day, but they stuck it out the entire 3 hours. I know they were exhausted by the end of each day. I learned that his abs and side muscles are already extremely strong and this causes him to lean forward and sideways often. They worked really hard with activities to strengthen the upper back and neck muscles to get him more upright. I didn't realize this but the more he hunches forward, the greater chance he has for developing scoliosis. We definitely don't want that. You could tell by the end of each week, he was exhausted and needed a break. So the weekends were always a welcome sight.
We came home the first weekend since it was July 4th. It was nice to sleep in my bed for a few nights. The second weekend, we decided to stay in Austin and let Tommy come visit us. That is another change we made from last year. While I missed sleeping in my bed on the weekends, it was definitely nice to not have to pack everything up each weekend. We were also able to spend a lot of time with our friends Chad, Kim and Blake. If you don't know, Blake and JT were NICU buddies. We have kept in touch with their family ever since and always enjoy spending time with them. Kim always takes good care of us while we are there.
JT was able to finish his therapy this year. Last year he got sick and missed the last 3 days. This year we made it all the way to the end. To celebrate, I took him to Dairy Queen where I discovered his affection for hot fudge sundaes. We packed up and headed home Saturday morning and I was so happy to be in my bed. While the queen bed we slept in this year was far better than the sofa bed Jennifer and I shared last year, it still did not compare to my own bed. And of course it was great to be sleeping next to my adorable, snoring husband.
I made a cute little slideshow of our time in therapy. It gives a pretty broad idea of the things he worked on and you can see he had a smile on his face the whole time. Hope you enjoy it.
As I mentioned earlier, we got to spend a lot of time with Kim, Chad and Blake. Here are a few pics of us together.
Since we have been back, I have seen a lot of changes in his mobility. He is on his feet so much more than before. That may have some to do with having brand new wood floors. I think he gets tired of crawling on the hard surface and I find him often times scooting on his rear. It's kind of funny. But this may give him more incentive to stand and walk. I have been making him walk more from place to place in the house instead of me carrying him. It's helped me, and it's helping him. Just the other day, we were at my niece's birthday party and I took this video of him. It was great!
This week John is doing Super Place Camp. This is the same camp he does this week each year. It's at First Baptist Church of Houston, which is kind of a drive from our house. The good thing is that the church has everything I could possibly need, coffee, wi-fi, fitness center and a cafe. And yes, I have actually used the fitness center this week. They gave the parents of the campers a 2 week pass to use it.
The rest of the summer we will be in survival mode, trying to stay occupied until school starts again.
Monday, June 9, 2014
1 in a Million
Has it really been almost 4 months since I last blogged? I guess I'm not very good at staying current on this thing. We have a lot going on this summer, so I'll try to do better at keeping you updated. But for now, I thought I'd spend a little time catching you up on what's been happening.
First thing's first....Our boy turned 9 years old on May 24. I CANNOT BELIEVE HE IS NINE!!!! Where has the time gone? It feels like not so long ago, we brought this tiny little guy home from the hospital for the first time. I remember how small he was. Now, not so much. He's huge. He is about 4'4" tall now and weighs about 60 lbs. You read that right, 60 POUNDS! And yes, I am still picking him up and carrying him. I know I should make him walk more, but when I pick him up, he gives the best hugs, and well, I enjoy his hugs. He just finished 3rd grade. He will be in 4th grade next year, and I'm struggling with that one. 3rd grade still sounds like lower elementary, but 4th grade is one step away from 5th grade, and 5th grade is just too old. He is growing up far too fast. Last night, he was sitting with me in the recliner, snuggling before bed, and I asked him if he will still sit with me and snuggle in the recliner when he's 17. Of course, by then, he will be bigger than me, so I'll probably be sitting in his lap.
We had a fun party planned for him with many of his friends and it was going to be on his actual birthday. We had reserved a place at the park where we had his 1st and 2nd birthday parties. But he came home from school the day before with fever, and he woke up the next morning, still running fever. So we had to cancel his party. I was very sad to cancel it. We plan to reschedule, but we have not decided on a date yet. Fortunately, he just had a sinus infection and after a course of antibiotics, he is doing much better. We go this afternoon to see his pediatrician for his 9 year well visit. I still can't get over him being 9.
Onto the next thing, and that is his health. Health wise, he is doing fantastic. He's growing like he should and there have been no major illnesses, and thankfully, no more hospitalizations. I get asked all of the time what John has. In other words, does he have some kind of genetic syndrome that explains why he is the way he is. And I always have to answer that question with "he's just developmentally delayed." Well not any more. We officially have a genetic diagnosis after 8 years of searching.
You may remember that last spring, we had some blood work drawn on John as well as Tommy and me. They were going to do genetic testing called Whole exome sequencing. Please don't ask me exactly what that means because I just don't know. But in a nutshell, they take a close look at all of his pairs of Chromosomes and check for any abnormalities. This could mean chromosomes that are completely missing or that maybe has a missing piece. The process takes 4-6 months so we didn't sit around everyday waiting to hear results. We finally went in to see the Geneticist in August and he went over the report with us. There were several "affected" Chromosomes in John's DNA, however, for everyone of his that was affected, either Tommy or I had the same one that was affected. Because we do not have the needs that John has, none of these explained why John has the issues he has. So the doctor requested the lab send him the expanded report so he could take a closer look. And on Halloween day, I got the phone call we've waited for 8 years to receive. It was Dr. Brown and his words to me were "We think we have an answer regarding John." I couldn't believe it. I never thought we would ever get that answer. Of course that would mean that they would need to check his DNA to make sure that specific gene was indeed affected and confirm the diagnosis. A few months later, we went in for a visit and sure enough, it was confirmed. Our boy has a genetic syndrome known as Ohdo Syndrome. Never heard of it? Neither had we. In fact, neither had his doctor. We always knew John was 1 in a million, but actually, that's about the percentage of people in the world with this syndrome. It's very rare, and relatively new as far as genetic syndromes go. It was discovered in the 1980's and then later a variant of Ohdo Syndrome was discovered and they call it Ohdo/SBBYS. This is the variant that John has. And it explains everything. It explains his respiratory issues, and his low muscle tone. It explains the ptosis in his eyes that he had surgically corrected at 3. It explains his global developmental delay as well as his intellectual disabilities. It explains why he has two teeth that do not have permanents and it explains why he's a poor feeder. And we discovered a couple of comical anomalies associated with his syndrome. Apparently, people with Ohdo/SBBYS has extra long thumbs and big toes. We never really thought about it before, but he does have these too. In fact the only thing he has that is not explained by this syndrome is retina problems. But there are a variety of other things that could have caused that. The good news is there is no real life expectancy attached to it, meaning he could live a full life. Some people with this syndrome have heart and kidney issues as well as missing or underdeveloped knee caps. John doesn't have any of these things. Because he doesn't have the heart or kidney issues, that makes it more likely that he will live a long and full life. And, there is nothing that we haven't already been doing that we should have been doing. And the especially interesting part about it is that this syndrome was not inherited from either me or Tommy. It started with John. So I think that maybe takes a little guilt off of both of us since it didn't come from either side of the family.
We have found a group on Facebook of parents who have kids with Ohdo Syndrome. It's been interesting to hear their stories and how similar we all are. In fact, these kids all have similar facial features, so it's like they all have a bunch of look-a-likes running around out there. There is one little boy in particular who is a little younger than John and every time his mom posts a picture of him as a baby, it could very easily be mistaken as a picture of John. They looked that much a like.
In other news, we had another successful year of Special Buddies at Shafer Elementary. We had a kick off event in October, a Bowling Party in December, a Winter event in December, a Special Buddies Field Day in May and an end of the year Zumba party in June. The kids all had so much fun together and you can really see the connection they each have made with their buddies. And on top of that, Emma's Special Knight Project successfully raised enough money to purchase the Sway Fun Glider and have it installed on the playground. We had a ribbon cutting ceremony for it in May and we made the news again. Now all of our kids, regardless of their abilities can play together at recess.
John is in VBS this week at Tallowood so I am hanging out at Starbucks until it's time to pick him up at noon. That is why I finally had the time to sit down and blog. I'm sure I've left some things out, but I hit the highlights. We will be going back to Austin on June 30 to spend another 3 weeks doing Therasuit Therapy for John. He did so well with it last summer, we thought we'd give it another go. This time, instead of fighting with a hotel and having the drama that comes with that, we have rented a 2 bedroom house. I have corresponded with the owner via email and he is such a nice man and has been more than accommodating for us. Our friend in Austin even met the owner at the house and checked it out for us to make sure it meets our needs. So we will have more space to spread out and hopefully avoid the germs that comes from a hotel room. I hope to blog more this summer and keep you posted on therapy.
First thing's first....Our boy turned 9 years old on May 24. I CANNOT BELIEVE HE IS NINE!!!! Where has the time gone? It feels like not so long ago, we brought this tiny little guy home from the hospital for the first time. I remember how small he was. Now, not so much. He's huge. He is about 4'4" tall now and weighs about 60 lbs. You read that right, 60 POUNDS! And yes, I am still picking him up and carrying him. I know I should make him walk more, but when I pick him up, he gives the best hugs, and well, I enjoy his hugs. He just finished 3rd grade. He will be in 4th grade next year, and I'm struggling with that one. 3rd grade still sounds like lower elementary, but 4th grade is one step away from 5th grade, and 5th grade is just too old. He is growing up far too fast. Last night, he was sitting with me in the recliner, snuggling before bed, and I asked him if he will still sit with me and snuggle in the recliner when he's 17. Of course, by then, he will be bigger than me, so I'll probably be sitting in his lap.
We had a fun party planned for him with many of his friends and it was going to be on his actual birthday. We had reserved a place at the park where we had his 1st and 2nd birthday parties. But he came home from school the day before with fever, and he woke up the next morning, still running fever. So we had to cancel his party. I was very sad to cancel it. We plan to reschedule, but we have not decided on a date yet. Fortunately, he just had a sinus infection and after a course of antibiotics, he is doing much better. We go this afternoon to see his pediatrician for his 9 year well visit. I still can't get over him being 9.
Onto the next thing, and that is his health. Health wise, he is doing fantastic. He's growing like he should and there have been no major illnesses, and thankfully, no more hospitalizations. I get asked all of the time what John has. In other words, does he have some kind of genetic syndrome that explains why he is the way he is. And I always have to answer that question with "he's just developmentally delayed." Well not any more. We officially have a genetic diagnosis after 8 years of searching.
You may remember that last spring, we had some blood work drawn on John as well as Tommy and me. They were going to do genetic testing called Whole exome sequencing. Please don't ask me exactly what that means because I just don't know. But in a nutshell, they take a close look at all of his pairs of Chromosomes and check for any abnormalities. This could mean chromosomes that are completely missing or that maybe has a missing piece. The process takes 4-6 months so we didn't sit around everyday waiting to hear results. We finally went in to see the Geneticist in August and he went over the report with us. There were several "affected" Chromosomes in John's DNA, however, for everyone of his that was affected, either Tommy or I had the same one that was affected. Because we do not have the needs that John has, none of these explained why John has the issues he has. So the doctor requested the lab send him the expanded report so he could take a closer look. And on Halloween day, I got the phone call we've waited for 8 years to receive. It was Dr. Brown and his words to me were "We think we have an answer regarding John." I couldn't believe it. I never thought we would ever get that answer. Of course that would mean that they would need to check his DNA to make sure that specific gene was indeed affected and confirm the diagnosis. A few months later, we went in for a visit and sure enough, it was confirmed. Our boy has a genetic syndrome known as Ohdo Syndrome. Never heard of it? Neither had we. In fact, neither had his doctor. We always knew John was 1 in a million, but actually, that's about the percentage of people in the world with this syndrome. It's very rare, and relatively new as far as genetic syndromes go. It was discovered in the 1980's and then later a variant of Ohdo Syndrome was discovered and they call it Ohdo/SBBYS. This is the variant that John has. And it explains everything. It explains his respiratory issues, and his low muscle tone. It explains the ptosis in his eyes that he had surgically corrected at 3. It explains his global developmental delay as well as his intellectual disabilities. It explains why he has two teeth that do not have permanents and it explains why he's a poor feeder. And we discovered a couple of comical anomalies associated with his syndrome. Apparently, people with Ohdo/SBBYS has extra long thumbs and big toes. We never really thought about it before, but he does have these too. In fact the only thing he has that is not explained by this syndrome is retina problems. But there are a variety of other things that could have caused that. The good news is there is no real life expectancy attached to it, meaning he could live a full life. Some people with this syndrome have heart and kidney issues as well as missing or underdeveloped knee caps. John doesn't have any of these things. Because he doesn't have the heart or kidney issues, that makes it more likely that he will live a long and full life. And, there is nothing that we haven't already been doing that we should have been doing. And the especially interesting part about it is that this syndrome was not inherited from either me or Tommy. It started with John. So I think that maybe takes a little guilt off of both of us since it didn't come from either side of the family.
We have found a group on Facebook of parents who have kids with Ohdo Syndrome. It's been interesting to hear their stories and how similar we all are. In fact, these kids all have similar facial features, so it's like they all have a bunch of look-a-likes running around out there. There is one little boy in particular who is a little younger than John and every time his mom posts a picture of him as a baby, it could very easily be mistaken as a picture of John. They looked that much a like.
In other news, we had another successful year of Special Buddies at Shafer Elementary. We had a kick off event in October, a Bowling Party in December, a Winter event in December, a Special Buddies Field Day in May and an end of the year Zumba party in June. The kids all had so much fun together and you can really see the connection they each have made with their buddies. And on top of that, Emma's Special Knight Project successfully raised enough money to purchase the Sway Fun Glider and have it installed on the playground. We had a ribbon cutting ceremony for it in May and we made the news again. Now all of our kids, regardless of their abilities can play together at recess.
John is in VBS this week at Tallowood so I am hanging out at Starbucks until it's time to pick him up at noon. That is why I finally had the time to sit down and blog. I'm sure I've left some things out, but I hit the highlights. We will be going back to Austin on June 30 to spend another 3 weeks doing Therasuit Therapy for John. He did so well with it last summer, we thought we'd give it another go. This time, instead of fighting with a hotel and having the drama that comes with that, we have rented a 2 bedroom house. I have corresponded with the owner via email and he is such a nice man and has been more than accommodating for us. Our friend in Austin even met the owner at the house and checked it out for us to make sure it meets our needs. So we will have more space to spread out and hopefully avoid the germs that comes from a hotel room. I hope to blog more this summer and keep you posted on therapy.
Monday, February 17, 2014
Major Milestone
If you have followed our journey, even the littlest bit, you know that our son, John, is severely developmentally delayed. This was not something we knew would happen when he was born. This was not something we knew would happen when he was 6 months old. This was not even something we knew would happen when he was 1 year old. But some time after his 1st birthday, we began to realize this is what we had in store for us. John would never catch up with other kids his age. I don't think for a long time we even realized how severe it would be, but we did finally realize that he would not develop at the same rate other kids his age would.
One of the areas John is delayed is his oral motor skills. You wouldn't know it by looking at him now, but John was considered a "poor feeder" as a baby. And I guess as far as oral motor skills go, he still is a "poor feeder". He eats well these days, but not the way he is supposed to eat. John cannot chew food. He has to eat food that we puree for him. Now he can chow down on some pureed food, but he just cannot chew it. He has made strides in his oral motor skills as far as being able to appropriately move his tongue around in his mouth, but he cannot make the cognitive connection it takes that when food goes into his mouth, it needs to be chewed. His first instinct is to swallow. This habit is further reinforced by the fact that he eats pureed food. So it's kind of a catch 22 he's in.
Have you ever thought about all of the things you have to do with your mouth in order to eat and drink? Probably not. It's always just been as automatic as breathing for most of us. But if you break it all down, it may be one of the most difficult things to learn. And unless you have ever watched someone struggle to learn how to do it, you probably didn't know how complicated it is.
The other thing John has never been able to do is drink from anything other than a bottle. And I can remember a time when he couldn't even do that. Most babies are born and within a few hours, figure out how to suck for nutrition. Some may even take a little longer than that, but most children figure it out pretty quickly. It's a natural instinct that they are born with. John wasn't born with that instinct. He literally had to start from the beginning.
When he was in his little incubator in the NICU, the Occupational Therapist would come in and work with him. She would put a glove on her hand, and take her pinky finger and just put the tip of it in his mouth. Almost immediately, his heart rate and oxygen would drop and she'd have to remove her finger. She did this for several days before he finally could tolerate having her finger there. Then she focused on trying to provoke his suck reflex. This took some time, but again, she was just using her pinky finger. He eventually got to where he could suck on her finger and he even used a pacifier a little. But he couldn't keep it in his mouth. We would have to hold it for him. The next step was to get him to tolerate having any liquid in his mouth. She would use a syringe and put just a tiny drop of liquid in his mouth. Of course now he has to figure out that it has to be swallowed. When he was able to tolerate liquids, we started trying to use a nipple from a bottle. He was not good with this at all. His suck reflex just wasn't strong. So they introduced this special bottle to him. It's called a haberman and this is a bottle that is typically used for kids with cleft pallets. It does not require him to suck. Instead he can bite down on the nipple and the liquid would come out. He used this bottle for a while. But he still was only able to drink a tiny amount before he would tire out. I can still remember the day he drank a whole ounce. I was so excited that I called my whole family to tell them.
By the time John came home from the hospital at 3 months, he was still drinking from the haberman and he was tolerating about 3 ounces at a time. Around 6 months old, I noticed he was not drinking 3 ounces any more. He was tiring out much quicker and we would have to give him the rest through his feeding tube. Around the same time, he was admitted to the hospital because of his sleep apnea. While at the hospital, we went to give him a bottle. We decided to use a regular nipple, but instead of grabbing a regular one, we accidentally grabbed a NUK nipple. This is more of a flat shape instead of round. Suddenly he drank all of his milk. So the next time we used the same kind and he did it again. We went home and replaced all of his regular nipples with NUK ones. He started doing really well.
Fast forward 8 years and John is still drinking all of his fluids from a bottle with a NUK nipple. We have worked with OT's for years trying to get him to use something else. We have bought just about every kind of cup on the market, thinking this would be the one he could use. Sippy cups never worked because he would just bite on the spout. We tried using just an open cup, but it was really hard to control the flow and he couldn't handle large amounts of liquid in his mouth at a time. We always kind of felt like the straw was going to be his best option, but again, biting the straw was an issue.
It is not convenient for a kid to drink from a bottle. He is very particular about where he drinks and what position he's in and who gives him a bottle. When we go out somewhere, we have to time our outings to where we can be home before his next bottle. And if we go to a restaurant, he can eat plenty, but he gets very little liquid in his mouth until we can get him home and give him a bottle.
For a while, his therapist has been able to get him to suck on a straw occasionally, but never with much consistency. And when I would try at home, he would just bite on it. It was really frustrating. But a few weeks ago, I noticed by accident that he got a couple of good sucks on a straw when I was working with him at home. So I began working with it pretty hard. He started getting better and better. Ladies and Gentlemen, I am very proud to announce that after 8 1/2 years and many years of therapy, we now have a straw drinker. It has finally clicked for this boy and he is now able to eat all of his food and drink all of his milk in one sitting. I don't even have to give him any cues any more. I just put the straw in his mouth and he knows what to do with it. It is simply amazing to watch. If you have never watched someone struggle with this, then you can't truly appreciate what a huge milestone it is. But my husband used a pretty good analogy earlier that might help you understand.
This is what he said:
Over the weekend at JT's baseball game his team was down by 3 runs with bases loaded and 2 outs. The coach called in John to bat and he hit a GRAND SLAM!!! His team went on to win 4-3. John was voted MVP of the game.
Now obviously that didn't actually happen, but that is exactly how exciting it is for us. We are such proud parents. This little boy never ceases to amaze us. He just keep going and working and he never gives up. Not ever. He is absolutely the definition of persistence.
One of the areas John is delayed is his oral motor skills. You wouldn't know it by looking at him now, but John was considered a "poor feeder" as a baby. And I guess as far as oral motor skills go, he still is a "poor feeder". He eats well these days, but not the way he is supposed to eat. John cannot chew food. He has to eat food that we puree for him. Now he can chow down on some pureed food, but he just cannot chew it. He has made strides in his oral motor skills as far as being able to appropriately move his tongue around in his mouth, but he cannot make the cognitive connection it takes that when food goes into his mouth, it needs to be chewed. His first instinct is to swallow. This habit is further reinforced by the fact that he eats pureed food. So it's kind of a catch 22 he's in.
Have you ever thought about all of the things you have to do with your mouth in order to eat and drink? Probably not. It's always just been as automatic as breathing for most of us. But if you break it all down, it may be one of the most difficult things to learn. And unless you have ever watched someone struggle to learn how to do it, you probably didn't know how complicated it is.
The other thing John has never been able to do is drink from anything other than a bottle. And I can remember a time when he couldn't even do that. Most babies are born and within a few hours, figure out how to suck for nutrition. Some may even take a little longer than that, but most children figure it out pretty quickly. It's a natural instinct that they are born with. John wasn't born with that instinct. He literally had to start from the beginning.
When he was in his little incubator in the NICU, the Occupational Therapist would come in and work with him. She would put a glove on her hand, and take her pinky finger and just put the tip of it in his mouth. Almost immediately, his heart rate and oxygen would drop and she'd have to remove her finger. She did this for several days before he finally could tolerate having her finger there. Then she focused on trying to provoke his suck reflex. This took some time, but again, she was just using her pinky finger. He eventually got to where he could suck on her finger and he even used a pacifier a little. But he couldn't keep it in his mouth. We would have to hold it for him. The next step was to get him to tolerate having any liquid in his mouth. She would use a syringe and put just a tiny drop of liquid in his mouth. Of course now he has to figure out that it has to be swallowed. When he was able to tolerate liquids, we started trying to use a nipple from a bottle. He was not good with this at all. His suck reflex just wasn't strong. So they introduced this special bottle to him. It's called a haberman and this is a bottle that is typically used for kids with cleft pallets. It does not require him to suck. Instead he can bite down on the nipple and the liquid would come out. He used this bottle for a while. But he still was only able to drink a tiny amount before he would tire out. I can still remember the day he drank a whole ounce. I was so excited that I called my whole family to tell them.
By the time John came home from the hospital at 3 months, he was still drinking from the haberman and he was tolerating about 3 ounces at a time. Around 6 months old, I noticed he was not drinking 3 ounces any more. He was tiring out much quicker and we would have to give him the rest through his feeding tube. Around the same time, he was admitted to the hospital because of his sleep apnea. While at the hospital, we went to give him a bottle. We decided to use a regular nipple, but instead of grabbing a regular one, we accidentally grabbed a NUK nipple. This is more of a flat shape instead of round. Suddenly he drank all of his milk. So the next time we used the same kind and he did it again. We went home and replaced all of his regular nipples with NUK ones. He started doing really well.
Fast forward 8 years and John is still drinking all of his fluids from a bottle with a NUK nipple. We have worked with OT's for years trying to get him to use something else. We have bought just about every kind of cup on the market, thinking this would be the one he could use. Sippy cups never worked because he would just bite on the spout. We tried using just an open cup, but it was really hard to control the flow and he couldn't handle large amounts of liquid in his mouth at a time. We always kind of felt like the straw was going to be his best option, but again, biting the straw was an issue.
It is not convenient for a kid to drink from a bottle. He is very particular about where he drinks and what position he's in and who gives him a bottle. When we go out somewhere, we have to time our outings to where we can be home before his next bottle. And if we go to a restaurant, he can eat plenty, but he gets very little liquid in his mouth until we can get him home and give him a bottle.
For a while, his therapist has been able to get him to suck on a straw occasionally, but never with much consistency. And when I would try at home, he would just bite on it. It was really frustrating. But a few weeks ago, I noticed by accident that he got a couple of good sucks on a straw when I was working with him at home. So I began working with it pretty hard. He started getting better and better. Ladies and Gentlemen, I am very proud to announce that after 8 1/2 years and many years of therapy, we now have a straw drinker. It has finally clicked for this boy and he is now able to eat all of his food and drink all of his milk in one sitting. I don't even have to give him any cues any more. I just put the straw in his mouth and he knows what to do with it. It is simply amazing to watch. If you have never watched someone struggle with this, then you can't truly appreciate what a huge milestone it is. But my husband used a pretty good analogy earlier that might help you understand.
This is what he said:
Over the weekend at JT's baseball game his team was down by 3 runs with bases loaded and 2 outs. The coach called in John to bat and he hit a GRAND SLAM!!! His team went on to win 4-3. John was voted MVP of the game.
Now obviously that didn't actually happen, but that is exactly how exciting it is for us. We are such proud parents. This little boy never ceases to amaze us. He just keep going and working and he never gives up. Not ever. He is absolutely the definition of persistence.
Wednesday, February 12, 2014
More Special Knight News
Just a brief update on fundraising for Emma's Special Knight Project. Emma's mom, Heather, spoke with the principal of our school about raising funds. Basically, each school determines the amount of fundraisers they can have during a given school year. They don't want to constantly bombard the parents with more and more fundraisers. I understand this, of course, as a parent. Unfortunately, our school already has all of it's allotted fundraisers accounted for, so we are unable to raise any more money as a school. However we are able to continue to raise money privately. So that is what we are doing.
Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us. Hopefully that will get us to where we need to be.
The good news is that we have already raised over $5,000. I am blown away by that amount and by the generosity of everyone who has supported us. You all will never truly know how much it means to us. Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts. And I know that Heather and Emma echo that sentiment.
Because we cannot fundraise at school, it is so very important that we continue to get the word out. The wider we share this project, the better chance we have to meet our goal. When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase. I think it's a great picture of how much fun it can be. And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.
This project means so much to John, Emma and the rest of the Special Buddies at Shafer. I cannot even describe the connection each of the buddies have made. So to be able to do something so much fun like this together, would be awesome. And here is the cool thing. We have 19 life skills kids and each kid has 2 buddies. So that is about 57 total kids that are involved in the program. However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them. So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.
Thank you again for your support, and please help us to spread the word far and wide.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us. Hopefully that will get us to where we need to be.
The good news is that we have already raised over $5,000. I am blown away by that amount and by the generosity of everyone who has supported us. You all will never truly know how much it means to us. Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts. And I know that Heather and Emma echo that sentiment.
Because we cannot fundraise at school, it is so very important that we continue to get the word out. The wider we share this project, the better chance we have to meet our goal. When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase. I think it's a great picture of how much fun it can be. And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.
This project means so much to John, Emma and the rest of the Special Buddies at Shafer. I cannot even describe the connection each of the buddies have made. So to be able to do something so much fun like this together, would be awesome. And here is the cool thing. We have 19 life skills kids and each kid has 2 buddies. So that is about 57 total kids that are involved in the program. However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them. So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.
Thank you again for your support, and please help us to spread the word far and wide.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Friday, February 7, 2014
Special Knight Update
I wanted to give you all an update on Emma's Special Knight Project. The good news is that since posting her fundraising page on Facebook just 5 days ago, she has raised $900. That's incredible!!!! Emma and her mom as well as Tommy and I are extremely thankful to those of you who have graciously given money to help us get wheelchair accessible playground equipment for our school. You will never know how much your generosity has meant to all of us.
On Wednesday, I spoke with a sales rep for a company that sells this equipment. Now granted, this is just one bid, but it was a lot more than I was expecting. The price of just the structure alone is $20,000. And then we have to add the cost of shipping, and installation as well as whatever kind of safety surface we have to put around the equipment. So we are looking at a minimum of $25,000 to purchase and install this structure. That means, we need a lot more help.
Emma's mom and I plan to meet with our principal soon to discuss with her some possible fundraising ideas that we can do at school. Also, Ms. Lindner spoke with a lady yesterday from an organization called Be An Angel. She said the lady was extremely helpful and she wants to help us. She has to present to the board of course, and it could take 30 days to get an answer, since the board only meets once a month on this type of thing. But if they approve, they will be willing to help us fundraise, and possibly donate some of the money to us. We are excited for this possibility. We are both itching to get going on whatever fundraising project we can. We want to see this equipment on our playground, if not by the end of school this year, then by the start of school next year.
I have one last thing to ask of you all. If you don't mind, please copy the below link and post it on your Facebook or Twitter page. You can even go to the link and use the Facebook or Twitter button to share directly from there. We have raised $900 in 5 days just from sharing on Facebook. The more people that know, the more money we will be able to raise. Thanks to everyone who has supported us. These kids deserve to have a place to play just like everyone else.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
On Wednesday, I spoke with a sales rep for a company that sells this equipment. Now granted, this is just one bid, but it was a lot more than I was expecting. The price of just the structure alone is $20,000. And then we have to add the cost of shipping, and installation as well as whatever kind of safety surface we have to put around the equipment. So we are looking at a minimum of $25,000 to purchase and install this structure. That means, we need a lot more help.
Emma's mom and I plan to meet with our principal soon to discuss with her some possible fundraising ideas that we can do at school. Also, Ms. Lindner spoke with a lady yesterday from an organization called Be An Angel. She said the lady was extremely helpful and she wants to help us. She has to present to the board of course, and it could take 30 days to get an answer, since the board only meets once a month on this type of thing. But if they approve, they will be willing to help us fundraise, and possibly donate some of the money to us. We are excited for this possibility. We are both itching to get going on whatever fundraising project we can. We want to see this equipment on our playground, if not by the end of school this year, then by the start of school next year.
I have one last thing to ask of you all. If you don't mind, please copy the below link and post it on your Facebook or Twitter page. You can even go to the link and use the Facebook or Twitter button to share directly from there. We have raised $900 in 5 days just from sharing on Facebook. The more people that know, the more money we will be able to raise. Thanks to everyone who has supported us. These kids deserve to have a place to play just like everyone else.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Monday, February 3, 2014
Special Knight Project
It's been a while since I have posted anything. There are many things I could update you on, but today I want to focus on a special project that is very near to my heart. Here is a little background on how this project came to be.
You may remember a blog I wrote a while back about a little girl we met while eating out with friends. If you don't, let me refresh your memory. While having dinner at one of our local favorite Mexican food joints one night, a young girl approached our table and began talking to John. It was clear that she knew John. Her mom then walked up to introduce herself. It turned out that the girl, Emma, was a student at Shafer Elementary and was in John's 2nd grade class. Her mom then told us a story that melted all of our hearts. The school was having a contest for someone to draw a picture of a Knight (the school's mascot) and the winning picture would be on the cover of the year book. Emma came home and told her mom that she thinks sometimes Knights can be in wheelchairs so that is what she drew. She submitted her picture of a Knight in a wheelchair and she titled her drawing "John". Her picture didn't make the cover, but it did make it inside of the year book. So I mentioned to Emma that when the new school year started, she should join Special Buddies.
Special Buddies is a program that pairs special needs students with typically developing students as buddies. The program is aimed to help students celebrate everyone's differences and to teach students that just because they are different on the outside, they are all still the same on the inside.
Emma joined Special Buddies this year and she is one of John's buddies. But that little girl was just beginning to impress me with her very kind and generous heart.
As the Special Buddies Parent Liaison at Fred and Patti Shafer Elementary School in Katy, Texas, I threw out the idea to our sponsor that we should try and get a wheel chair swing for our playground. It would be nice to have a piece of equipment that our students in wheelchairs could enjoy. You see, at Shafer, we have 19 life skills students, and 5 of those students are in wheelchairs. That means that 5 of those students go out to recess with their class every day and have to sit on the sidelines and watch their friends play because there is no wheelchair accessible equipment for them. So in my first contact with the Special Buddies parents, I outlined the events we were planning for the year and some special projects we wanted to work towards. One of those projects was the wheelchair swing. I soon heard from Emma's mom that Emma was taking it upon herself to get some inclusive equipment installed on our playground. She also was taking the initiative to raise funds for this. If you have ever priced anything that is labeled "special needs" then you know just how expensive these things can be. So it's going to be no small feat to raise the amount of funds needed not only to purchase the equipment, but also to pay for the installation.
Since this project started, we have decided instead of just a wheelchair swing, we wanted to get something called a Sway Fun Glider. This is what it looks like:
As you can see, it is a large structure that would be inclusive for kids of all abilities. You could actually fit two wheelchairs on the structure along with other kids sitting on the benches. And you can have more kids standing around the outside helping to make it rock. We don't have an exact price on this equipment, but our estimate is that it will cost between $10,000 and $20,000 for the equipment and the installation. As of today, Emma, on her own, has raised almost $3000 towards this project. Also on Emma's agenda is to attend a school board meeting and try to encourage the board to install inclusive playground equipment at all new campuses. What an amazing young girl she is. Like I said, she has a very kind and generous heart.
If you feel so inclined, you can help Emma reach her goal so that all of her friends at school can enjoy recess. As it is now, the kids that are in wheelchairs can only sit on the sidelines and watch the other kids play. They don't get to join in on the fun with them. This is not okay with Emma she wants to change this. To donate to Emma's Special Knight Project, visit the following link:
www.youcaring.com/emmacares
The link includes details of the fund raiser as well as a cute picture of John and his two buddies, Emma and Charlie. If you are unable to contribute to this fund, then I ask that you pass along our information to any of your friends whom you think might be able to help. You can share our link on Twitter, Facebook or by email. It would be great to see the faces of the kids as they get to enjoy this equipment and participate in recess for the first time.
You may remember a blog I wrote a while back about a little girl we met while eating out with friends. If you don't, let me refresh your memory. While having dinner at one of our local favorite Mexican food joints one night, a young girl approached our table and began talking to John. It was clear that she knew John. Her mom then walked up to introduce herself. It turned out that the girl, Emma, was a student at Shafer Elementary and was in John's 2nd grade class. Her mom then told us a story that melted all of our hearts. The school was having a contest for someone to draw a picture of a Knight (the school's mascot) and the winning picture would be on the cover of the year book. Emma came home and told her mom that she thinks sometimes Knights can be in wheelchairs so that is what she drew. She submitted her picture of a Knight in a wheelchair and she titled her drawing "John". Her picture didn't make the cover, but it did make it inside of the year book. So I mentioned to Emma that when the new school year started, she should join Special Buddies.
Special Buddies is a program that pairs special needs students with typically developing students as buddies. The program is aimed to help students celebrate everyone's differences and to teach students that just because they are different on the outside, they are all still the same on the inside.
Emma joined Special Buddies this year and she is one of John's buddies. But that little girl was just beginning to impress me with her very kind and generous heart.
As the Special Buddies Parent Liaison at Fred and Patti Shafer Elementary School in Katy, Texas, I threw out the idea to our sponsor that we should try and get a wheel chair swing for our playground. It would be nice to have a piece of equipment that our students in wheelchairs could enjoy. You see, at Shafer, we have 19 life skills students, and 5 of those students are in wheelchairs. That means that 5 of those students go out to recess with their class every day and have to sit on the sidelines and watch their friends play because there is no wheelchair accessible equipment for them. So in my first contact with the Special Buddies parents, I outlined the events we were planning for the year and some special projects we wanted to work towards. One of those projects was the wheelchair swing. I soon heard from Emma's mom that Emma was taking it upon herself to get some inclusive equipment installed on our playground. She also was taking the initiative to raise funds for this. If you have ever priced anything that is labeled "special needs" then you know just how expensive these things can be. So it's going to be no small feat to raise the amount of funds needed not only to purchase the equipment, but also to pay for the installation.
Since this project started, we have decided instead of just a wheelchair swing, we wanted to get something called a Sway Fun Glider. This is what it looks like:
As you can see, it is a large structure that would be inclusive for kids of all abilities. You could actually fit two wheelchairs on the structure along with other kids sitting on the benches. And you can have more kids standing around the outside helping to make it rock. We don't have an exact price on this equipment, but our estimate is that it will cost between $10,000 and $20,000 for the equipment and the installation. As of today, Emma, on her own, has raised almost $3000 towards this project. Also on Emma's agenda is to attend a school board meeting and try to encourage the board to install inclusive playground equipment at all new campuses. What an amazing young girl she is. Like I said, she has a very kind and generous heart.
If you feel so inclined, you can help Emma reach her goal so that all of her friends at school can enjoy recess. As it is now, the kids that are in wheelchairs can only sit on the sidelines and watch the other kids play. They don't get to join in on the fun with them. This is not okay with Emma she wants to change this. To donate to Emma's Special Knight Project, visit the following link:
www.youcaring.com/emmacares
The link includes details of the fund raiser as well as a cute picture of John and his two buddies, Emma and Charlie. If you are unable to contribute to this fund, then I ask that you pass along our information to any of your friends whom you think might be able to help. You can share our link on Twitter, Facebook or by email. It would be great to see the faces of the kids as they get to enjoy this equipment and participate in recess for the first time.
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