The last few weeks have been quite a whirlwind. Our normal routine has been out of sync for about 2 weeks now and it's been crazy. Today is the first day that has felt "normal" in quite a while and hopefully it will stay that way for a while.
Two weekends ago, John began to get sick. On that Sunday night, he didn't sleep well and even woke up during the night crying, which is something he never does. The next morning, I took him to therapy. It was supposed to be his first day of Physical Therapy. About half way through his OT, he started making unhappy faces and he had tears falling from his eyes. I didn't know what was bothering him, but I knew he didn't feel well. So I decided to take him home and skip the physical therapy. It was a school holiday so we just stayed home the rest of the day and rested.
That evening, while eating dinner, his tummy got upset and he vomited everywhere. He really hadn't had much to eat or drink that day, so I was shocked with how much was actually in his stomach. Thank goodness that Tommy was home and he took over the clean up efforts. That was a big mess. So needless to say, he stayed home from school the next day. I thought he was feeling better and would be back to school on Wednesday, but after we put him to bed that night. he got sick again. So he stayed home Wednesday. He managed to stay well all day Wednesday and made it to school on Thursday and Friday.
Saturday, we took a day trip to San Antonio to celebrate the 7th birthday of a very special friend at Morgan's Wonderland. I have talked about Blake before. We met him and his family during the time John spent in the NICU at Texas Children's Hospital. We have been friends and have kept in touch ever since. He will always be John's very first friend. In case you don't remember, Morgan's Wonderland is an ultra accessible park in San Antonio that allows children of all abilities the opportunity to play together. We always enjoy spending time there. After several hours of fun and some yummy birthday cake, we headed home. John got fussy on the car ride home, and that was my first sign that he wasn't feeling 100%.
We got home that evening and John began to have tummy troubles again. This time it was the other end that was giving him trouble. I will spare you the details on that. So after having his diaper changed by the nurse every hour that night and into the morning, we finally gave him some Imodium on Sunday morning and that seemed to take care of it. I planned to keep him home on Monday to rest. Monday night I went to dinner with some friends, and right before we left to come home, Tommy called and told me that John had gotten sick again after going to bed. At this point I felt like it was never going to end. So we kept him home again on Tuesday and this time took him to see the doctor. She said it was just a virus and to keep him hydrated as best as we could.
Meanwhile, Tommy was on vacation this whole week, so he was home and around John more than normal. So while I planned to keep John home again on Wednesday, I did not plan on Tommy waking up Wednesday morning sick. I was having flashes of a terrible week we had a couple of years ago when John had a stomach bug that I eventually got and Tommy had his "near fatal illness" all at the same time. Fortunately, Tommy was only sick for that one day and was feeling back to normal by Thursday. We sent John to school on Thursday, only to get a call 2 hours into the day that he was not feeling well and needed to come home. I think he just didn't have his full strength back yet and didn't have the energy to make it through the day. We sent him to school on Friday and he did well. Today is his third day back to school and he seems to be doing well, but now he's gotten very congested and we are fighting to keep the trach clear of secretions and to keep the area around the trach clean and dry. So it just feels like he is never going to be completely well. I will be so happy to get my John all of the way back.
Friday, I was supposed to sub for Junior High Girl's PE, and then afterward, Tommy and I were leaving to go to Baton Rouge for the LSU/Auburn game. We were planning to leave John home with my parents so we could enjoy the weekend by ourselves. I woke up Friday morning feeling terrible. There was no way I could have made it through the day feeling the way I did. It's hard enough to make it through a day of Junior High when you are at full strength. So I called in sick and stayed home and slept most of the day. I was finally feeling some better, so we decided to go ahead and go to Baton Rouge.
We stayed the weekend with my good friend, ChristyPitre family here in Katy, who sold us their season tickets for that game. The seats couldn't have been better. They were under an overhang so it was shady and there was a nice breeze. The seats also had seat backs so it was more comfortable to sit there. Watching the Tigers beat Auburn pretty bad made me feel so much better. Overall it was a fun weekend.
Yesterday, I did go to work in Junior High Girl's PE, so Tommy took one more day of vacation so he could take John to his therapies and then to school. He seemed to have a good day at school. I went to the doctor to find out why I still had a sore throat and came home with an antibiotic and steroid to hopefully get me well. Today, was the first normal morning we have had in quite a while, and it was nice to get John on the school bus and be able to come in and drink my coffee and relax. Hopefully there are more of these days to come in the near future. Now, if I can figure where to start to get my house put back together.
Tuesday, October 25, 2011
Tuesday, October 4, 2011
Emotions
Being a mom of a child with special needs is the most rewarding job I've ever done. While it is so tough for me to watch him struggle to do basic things that I take for granted, it is also so exciting and full filling to watch him make progress with those same things. I have never been so excited to get a high five from anyone in my life.
But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done. It is exhausting both mentally and physically. My child cannot walk, so he has to be lifted and carried from place to place. This is taking a huge toll on my body. In the past 6 years, it feels like I have aged twice that amount. But I wouldn't trade having that sweet lovable boy for anything in the world.
This has been an emotional roller coaster for me. While some parents of children with special needs know from day one that their child will never be typical, I did not. I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age. And even for probably 2 years after he was born, I still felt that was a possibility. But all of his disabilities began coming one at a time. First it was the feeding, then the trach. Next came his vision impairment and that was followed by his hearing impairment. I finally began to realize that John will never be like other typical kids his age. He is always going to struggle. And with each diagnosis came a new set of tears. I cried when we found out he was going to need a trach. I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids. For those of you who have never seen me cry, it isn't pretty. I'm not the type of person who can hide the tears. As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news. If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.
When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do. When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried. Right in a waiting room full of people, I cried. It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose. Then his OT told me that she thought he needed a break all together. She had been working for 2 years on the same things and he just wasn't getting it. She didn't think he was at a developmental age where he could understand what to do. Again, it felt like she had lost hope and again I cried. It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.
I haven't had one of those emotional days in a while. Things have been good and since John has been in school all day, he has made lots of progress. I even have gotten him back into private OT and PT, which he will start this coming Monday. But today, I had one of those days.
We had his annual ARD scheduled for today. I know a lot of parents that dread these meetings because they can be long and drawn out. For me it has never been something I have dreaded. They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff. So I had no reason to think today would be any different. Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting. You see, John spends most of his day in the special education classroom. This is where they are most equipped to meet his educational needs and where he does his best learning. But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time. This is a time when they do musical learning and we all know how much John loves music. He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week. But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning. He will continue to go to music and art with them and will also participate in class parties and special events with them. But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.
I have done a pretty good job of putting up this facade that I am such a strong person. But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.
But like I said, I would not trade my son or all of the ups and downs we have had for anything. He shows me that it's okay to struggle, as long as you are persistent and keep trying. And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.
But while it is the most rewarding job I've ever done, it is also by far the hardest thing I've ever done. It is exhausting both mentally and physically. My child cannot walk, so he has to be lifted and carried from place to place. This is taking a huge toll on my body. In the past 6 years, it feels like I have aged twice that amount. But I wouldn't trade having that sweet lovable boy for anything in the world.
This has been an emotional roller coaster for me. While some parents of children with special needs know from day one that their child will never be typical, I did not. I knew he was born early and he was small, but I thought with time he would grow and catch up with other kids his age. And even for probably 2 years after he was born, I still felt that was a possibility. But all of his disabilities began coming one at a time. First it was the feeding, then the trach. Next came his vision impairment and that was followed by his hearing impairment. I finally began to realize that John will never be like other typical kids his age. He is always going to struggle. And with each diagnosis came a new set of tears. I cried when we found out he was going to need a trach. I cried when I found out his vision wasn't normal and I cried when I found out he would need hearing aids. For those of you who have never seen me cry, it isn't pretty. I'm not the type of person who can hide the tears. As soon as I even think about crying, it is visible on my face. So you can imagine what I looked like to all of those doctors who had to give us the news. If they would all just ignore me and leave me alone, the crying would stop sooner, but as soon as someone acknowledges in any way that I am crying, it just makes it worse.
When John was having private physical therapy twice a week, I had a lot of hope that he was going to keep getting stronger and would some day be able to do many of the things I hoped for him to do. When the therapist talked to me and told me that therapy twice a week wasn't producing the results it should and that he should only come once a week, I cried. Right in a waiting room full of people, I cried. It just felt like she no longer had hope for him and that was one thing I couldn't afford to lose. Then his OT told me that she thought he needed a break all together. She had been working for 2 years on the same things and he just wasn't getting it. She didn't think he was at a developmental age where he could understand what to do. Again, it felt like she had lost hope and again I cried. It became a joke that someone isn't an official doctor or caregiver of John until they have seen me cry.
I haven't had one of those emotional days in a while. Things have been good and since John has been in school all day, he has made lots of progress. I even have gotten him back into private OT and PT, which he will start this coming Monday. But today, I had one of those days.
We had his annual ARD scheduled for today. I know a lot of parents that dread these meetings because they can be long and drawn out. For me it has never been something I have dreaded. They have usually been easy and straight forward and I'm always pleased with the reports I get from the teachers and support staff. So I had no reason to think today would be any different. Everything was going along smoothly, just like always, and then the teacher dropped something on me I wasn't expecting. You see, John spends most of his day in the special education classroom. This is where they are most equipped to meet his educational needs and where he does his best learning. But last year and so far this year, he has been going into the regular classroom to be with other kids his age, mainly for the beginning of the day and calendar time. This is a time when they do musical learning and we all know how much John loves music. He also goes with the 1st grade class when they go to Art and Music 2 or 3 times a week. But the teacher recommended that he no longer go to his 1st grade class for the calendar time in the morning. He will continue to go to music and art with them and will also participate in class parties and special events with them. But because he really is unable to participate with the rest of the class, she felt that time would be better spent in the special education classroom working on his goals.
I have done a pretty good job of putting up this facade that I am such a strong person. But when someone sees me cry, it just lets them see that I am not near as strong as I appear to be, and I don't know how to deal with that.
But like I said, I would not trade my son or all of the ups and downs we have had for anything. He shows me that it's okay to struggle, as long as you are persistent and keep trying. And when he wraps his arms around my neck and squeezes tight, it makes me smile, even if there are tears falling.
Monday, October 3, 2011
Catching Up
I have seriously been lagging behind in the blogging world. I just realized that it has been nearly 2 months since my last post. So I thought, as I sit here waiting on John at therapy, this would be a great time to do a little catching up. But honestly, there hasn't been that much going on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
This coming weekend, John and I are going to Kinder. My mom is going to Indiana to celebrate her brother's birthday, and my brother Jimmie and his family are coming to Kinder for Jimmie's 20th high school reunion. So I'm going to help my dad keep the kids while Jimmie and Chrystal attend the reunion festivities. I can't wait to see them and spend time with the kids. It should be a fun weekend.
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
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| Waking up the first day of 1st grade. |
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| Ready for school! |
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
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