It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going. The first 3 nights were great. He slept with no ventilator and no oxygen and did quite well. But when Friday night came around, all of a sudden, he needed oxygen right away. So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off. Saturday night was much the same, except the oxygen was turned off at 4am. So at this point I'm thinking, 3 steps forward and 2 steps back.
Sunday night came and we were able to get him to sleep without the oxygen. So I thought we were making progress. But in the morning, the nurse told me he turned the oxygen on from 1am to 4am. DRATS! I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does. I'm just thinking maybe he's more tired and not taking deep enough breaths.
Monday and Tuesday were much the same. He needed oxygen part of the night, but not all of the night. By now it's really starting to bug me. I guess all of these years with John has not given me much patience. I want to see progress but I'm not doing so well to wait for it.
So last night, we put him to bed and it was the same thing. His oxygen levels were below 92 and wouldn't come up without oxygen. And even with the oxygen, they were only around 93 or 94. None of it made any sense to me. He should have higher oxygen sats with oxygen. So I sat down in the chair in his room and began to tear up. I'm just about at my breaking point and about ready to put him back on the ventilator. I want my baby to sleep well and I want to make sure he's able to breathe well. So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading. We have been struggling with the pulse ox probe on his toe. It's very tricky to get it in just the right spot to get a good reading. But his thumb is smaller so it shouldn't be hard to get it on there right. So we get it on his thumb, and low and behold his oxygen saturation is 98%. AMAZING! Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen. The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head. That would cause a problem with the signal picking up. So again, my brilliant husband suggested that we put it on his second toe instead of his big toe. It's smaller and we shouldn't have a problem getting it on. So that is what we ended up doing. And VOILA! No oxygen was needed all night long. He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.
So maybe the progress wasn't necessarily John's this time. He has probably been doing just fine all along and we didn't know. Maybe the progress was mine. I am the one who needs to learn a little patience. I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.
Thursday, February 9, 2012
Wednesday, February 1, 2012
Baby Steps
Yesterday, we had an appointment to see John's pulmonologist. It was his 6 month check up. The fact that it's been six months is a good sign, because until recently, we were seeing her every 3-4 months. We've gotten in the habit of going to these appointments with little to no expectations. Things don't seem to change much and we just expect them to tell us to keep the status quot. But something seemed different about this appointment. Maybe it was God telling us that it was going to be important.
Tommy doesn't always go with me to his doctor's appointments. After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there. But yesterday, he really wanted to be there. So he had to rearrange his schedule a little to make it. Of course, the wait was forever and I was glad to have him there. He went out and lit a fire under them after we had been there for an hour. I wouldn't have done that, because it's just not my personality. But he has no problems doing it. Within 3 minutes, the nurse was in to see us.
The doctor came in and looked over his records and read through the sleep study he had last May. While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased. In the beginning, he was having 100's of apnea events per hour of sleep. In May, the report showed he was having between 5 and 6 apnea events per hour. I'd say that's a huge improvement, but it was still somewhat of a concern. The other part of the equation is what his oxygen saturations look like during that time. At home, we try to keep him above 90% and that usually requires a ventilator and oxygen. During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event. So that is somewhat concerning. The reports do no indicate that he is ready to have his trach removed just yet.
Now for the encouraging news. We made a plan. It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve. So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen). We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it. For the past several months, he has been on the ventilator every night. She wanted us to just stop using the ventilator completely, and see how he does. The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day. The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath. This could cause him to have a restless night and not get enough rest. A lack of rest at night can cause problems with learning and overall development. Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest. She told us to try this every night and after a month, check back with her and let her know how he does.
So last night was our first try. He was very tired yesterday and could barely stay awake. He fell asleep as soon as he finished his dinner. I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%. That's a great start. When he sleeps off of the ventilator, we usually have him on just oxygen. So we put something called an HME over his trach. This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose. It is not good for someone to always breath dry and cold air. It dries out your airway. This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway. So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on. The plan is to keep his saturations above 92% with as little oxygen as possible. Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned. But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.
After I put him in bed, I stayed up until 10:00 when the nurse got there. His oxygen had dropped 3 or 4 times in that period, but it always came right back up. When the nurse got there, his oxygen was 96%. I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him. I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%.
NICU at 3 months. She knows his night time routines better than we do. He is her baby and she takes care of him better than any nurse we've ever had. She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on. So the fact that he stayed off all night is very encouraging to us.
We both said that we wouldn't get our hopes up. We have done so too many times to count and we have been disappointed every time. So while we aren't getting our hopes up, we are encouraged. It was just the first night, so time will tell how he is really doing. Our big focus will be whether we see a difference in him during the day. I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.
All of this is just baby steps towards our ultimate goal of having his trach removed. And even though the steps are small, they are still the biggest we've taken towards this goal so far. The long term plan is to continue this at night and then in a few months we will have a sleep study. If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good. It will mean so much to us if we are finally able to do that. It will improve the quality of life for him and for us. There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much. One thing I can't wait for him to do is go swimming and splash the water as much as he wants. But the first thing we will do is throw a giant party and you are all invited.
Please pray for us as we go through this process. Pray for John that he will continue to thrive and have good nights. And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad. Pray for Tommy and I, that we will know what is best for him. Pray that we will see the signs if this isn't working for him and we will know the best way to help him. And pray for the doctors as they will be making the ultimate decision for us. Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.
Thanks once again for taking this journey with us. We couldn't make it without your love and support and you will never know how much your encouragement means to us. I hope to post more updates (hopefully all positive) as we continue on this path. And with that, I will leave you with a couple of photos I took of John this week.
Tommy doesn't always go with me to his doctor's appointments. After John's first year or two, he decided that there wasn't new information being discussed and he didn't need to take time away from work to be there. But yesterday, he really wanted to be there. So he had to rearrange his schedule a little to make it. Of course, the wait was forever and I was glad to have him there. He went out and lit a fire under them after we had been there for an hour. I wouldn't have done that, because it's just not my personality. But he has no problems doing it. Within 3 minutes, the nurse was in to see us.
The doctor came in and looked over his records and read through the sleep study he had last May. While he is still having a significant amount of central apnea at night, the number of events per hour has drastically decreased. In the beginning, he was having 100's of apnea events per hour of sleep. In May, the report showed he was having between 5 and 6 apnea events per hour. I'd say that's a huge improvement, but it was still somewhat of a concern. The other part of the equation is what his oxygen saturations look like during that time. At home, we try to keep him above 90% and that usually requires a ventilator and oxygen. During the sleep study, without the ventilator and with some oxygen, his saturation fell as low as 81% during an event. So that is somewhat concerning. The reports do no indicate that he is ready to have his trach removed just yet.
Now for the encouraging news. We made a plan. It's always nice to have a plan going forward and not just come home and keep doing things the same way, hoping that he will just magically improve. So we decided to take him completely off of the ventilator at night, and to start the night on room air (no oxygen). We tried this some the last time we saw her, but we were just trying to ween him off and weren't consistent with it. For the past several months, he has been on the ventilator every night. She wanted us to just stop using the ventilator completely, and see how he does. The two main concerns are what his oxygen saturations will look like when he does have apnea and whether he's getting enough rest at night to be able to continue to thrive during the day. The brain is designed so that if you have apnea for so many seconds, it will wake you up in order to breath. This could cause him to have a restless night and not get enough rest. A lack of rest at night can cause problems with learning and overall development. Obviously, we have enough trouble with that and we don't want to add to it by him not getting enough rest. She told us to try this every night and after a month, check back with her and let her know how he does.
So last night was our first try. He was very tired yesterday and could barely stay awake. He fell asleep as soon as he finished his dinner. I put him in bed just after 7:30, put his pulse ox probe on his foot and immediately the monitor said his oxygen was 98%. That's a great start. When he sleeps off of the ventilator, we usually have him on just oxygen. So we put something called an HME over his trach. This is something that helps to humidify the air that he is breathing in since it's not going through his mouth or nose. It is not good for someone to always breath dry and cold air. It dries out your airway. This is attached to an adaptor that connects to the oxygen tank so that oxygen can be fed through the HME and into his airway. So I put this on him last night, attached it to the oxygen tank, but didn't turn the oxygen on. The plan is to keep his saturations above 92% with as little oxygen as possible. Of course that number will dip below from time to time when he is having apnea, but as long as it comes back up, we aren't so concerned. But if the number falls below 92% for 4-5 minutes at a time, then we would want to turn the oxygen on and see how that helps.
After I put him in bed, I stayed up until 10:00 when the nurse got there. His oxygen had dropped 3 or 4 times in that period, but it always came right back up. When the nurse got there, his oxygen was 96%. I explained to her what we were doing and what she needed to watch for and when she may need to turn the oxygen on for him. I asked her to keep track for us how many times his number dropped, what the lowest percentage was and what was the longest amount of time he spent below 92%.
NICU at 3 months. She knows his night time routines better than we do. He is her baby and she takes care of him better than any nurse we've ever had. She is pretty conservative too, so if she thought for a second that he might need oxygen, she would have turned it on. So the fact that he stayed off all night is very encouraging to us.
We both said that we wouldn't get our hopes up. We have done so too many times to count and we have been disappointed every time. So while we aren't getting our hopes up, we are encouraged. It was just the first night, so time will tell how he is really doing. Our big focus will be whether we see a difference in him during the day. I've already talked to his teacher at school about it and she is going to keep a close eye on him and let me know if she notices any changes.
All of this is just baby steps towards our ultimate goal of having his trach removed. And even though the steps are small, they are still the biggest we've taken towards this goal so far. The long term plan is to continue this at night and then in a few months we will have a sleep study. If all goes well with the sleep study and the doctor thinks he is ready, we will be able to take that thing out of his neck for good. It will mean so much to us if we are finally able to do that. It will improve the quality of life for him and for us. There are so many things he will be able to do, that he can't do now with the trach, and overall, we just won't have to worry about him so much. One thing I can't wait for him to do is go swimming and splash the water as much as he wants. But the first thing we will do is throw a giant party and you are all invited.
Please pray for us as we go through this process. Pray for John that he will continue to thrive and have good nights. And although I know he will have bad nights on occasion, please pray that the good nights far outweigh the bad. Pray for Tommy and I, that we will know what is best for him. Pray that we will see the signs if this isn't working for him and we will know the best way to help him. And pray for the doctors as they will be making the ultimate decision for us. Pray for God's wisdom and guidance so that when the time is right to have the trach removed, it will be obvious to us all.
Thanks once again for taking this journey with us. We couldn't make it without your love and support and you will never know how much your encouragement means to us. I hope to post more updates (hopefully all positive) as we continue on this path. And with that, I will leave you with a couple of photos I took of John this week.
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| He sure gets excited about sweet potatoes |
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| Yesterday was a very long day. |
Monday, January 16, 2012
Catching up
So it's been quite a while since I wrote a blog post. I guess that means life has been going pretty well and there isn't a lot of change to talk about. Mostly, I think it means I have just been lazy and haven't taken the time to write. Today seems just as good as any to get back to it.
Mostly, things have been pretty good. We had a great holiday season. Everyone was healthy this year, which is a far cry from last year, so we were able to enjoy time with our family. Santa was good to all of us. John's favorite gift by far was his new swing. We hung it on the swing set outside and his favorite way to pass time is in his swing. He is so much fun to watch. His eyes light up and he gets a huge smile. Of course he got plenty of other new toys, but while inside, he seems just as content to play with the laundry basket. Some times he curls up in a ball and pulls it completely on top of himself. If you walked in the room, you wouldn't know where he was. I guess that is his version of hide and seek.
Santa brought me the new iPhone 4s. Actually, he gave me AT&T gift cards that covered the amount of the phone and my husband went out and got the phone for me. I've been holding onto the 3gs for nearly 3 years and it had gotten so slow that it was almost like using dial up. So I love my new phone and all of the fun things I can do with it.
My husband was also very good to me. He got me the leather jacket I asked him for and he also got an xbox 360 Kinnect. He said it was for me, but I think it's really for both of us. Playing games on it is fun, but so far I have mostly used it for watching netflix. I have gotten hooked on a TV show, and I have been using netflix to catch up from the beginning. So overall I'd say the holidays were a success.
During the Christmas break, our nanny went home to Midland to spend a few weeks with her family. So we were able to utilize the services of our nanny that we had over the summer. Caitlin worked with us for 2 weeks and John had so much fun with her. It was great to see her and catch up with her again and John really enjoyed having his playmate back.
Also, during the holiday, John lost a tooth and I actually pulled it myself. I was so nervous to do it because I didn't want to hurt him, but it was so loose, that it didn't take much effort to pull it. Tommy held his head and arms and I pulled the tooth. Of course, he didn't flinch at all so that made it easier for me. He has the cutest snaggle tooth grin. The dentist told me that the top teeth usually take months to come back in. She said she thinks it's because God really likes to see those snaggle tooth smiles and I think she's right. But I can already see the new tooth starting to surface. The other top tooth is loose too, so pretty soon, he'll be missing both teeth. Maybe that's what he'll ask Santa for next Christmas. Although, I'm pretty sure they will be in by then.
Now that the holidays are over, and Tommy is no longer on vacation, we are back to the grind. John is back in school, which he is still doing well at, and today we got back to OT and PT for the first time in a month. It was good for both of us, since he had the day off of school.
Tommy left Saturday for an overseas trip. He will be gone a week and I have to say that I am already feeling slightly overwhelmed. We didn't have a nanny at all last week, so John and I spent A LOT of quality time together. So with Tommy being gone, and this being a 3 day weekend, we are spending even more quality time together, and I think it's wearing on me. I love my son to pieces, but sometimes I need a break. He really is time consuming. Tommy's dad came Saturday and is staying until tomorrow to give me a little help while he's out of school. While I appreciate the help he's been, I'm still the one doing all of the feeding and changing and most of the lifting, along with cooking and cleaning and laundry and everything else I do on a daily basis. So to say that I'm tired is an understatement. I feel my frustration level rising and I don't really know what to do to bring it back down. I think it will be a big help when he goes back to school tomorrow. I do treasure the time we spend together, but I need a break.
So that is about all for now. I will try and do a better job of keeping up with the blog. I hope everyone had a Merry Christmas and is having a great 2012!
Mostly, things have been pretty good. We had a great holiday season. Everyone was healthy this year, which is a far cry from last year, so we were able to enjoy time with our family. Santa was good to all of us. John's favorite gift by far was his new swing. We hung it on the swing set outside and his favorite way to pass time is in his swing. He is so much fun to watch. His eyes light up and he gets a huge smile. Of course he got plenty of other new toys, but while inside, he seems just as content to play with the laundry basket. Some times he curls up in a ball and pulls it completely on top of himself. If you walked in the room, you wouldn't know where he was. I guess that is his version of hide and seek.
Santa brought me the new iPhone 4s. Actually, he gave me AT&T gift cards that covered the amount of the phone and my husband went out and got the phone for me. I've been holding onto the 3gs for nearly 3 years and it had gotten so slow that it was almost like using dial up. So I love my new phone and all of the fun things I can do with it.
My husband was also very good to me. He got me the leather jacket I asked him for and he also got an xbox 360 Kinnect. He said it was for me, but I think it's really for both of us. Playing games on it is fun, but so far I have mostly used it for watching netflix. I have gotten hooked on a TV show, and I have been using netflix to catch up from the beginning. So overall I'd say the holidays were a success.
During the Christmas break, our nanny went home to Midland to spend a few weeks with her family. So we were able to utilize the services of our nanny that we had over the summer. Caitlin worked with us for 2 weeks and John had so much fun with her. It was great to see her and catch up with her again and John really enjoyed having his playmate back.
Also, during the holiday, John lost a tooth and I actually pulled it myself. I was so nervous to do it because I didn't want to hurt him, but it was so loose, that it didn't take much effort to pull it. Tommy held his head and arms and I pulled the tooth. Of course, he didn't flinch at all so that made it easier for me. He has the cutest snaggle tooth grin. The dentist told me that the top teeth usually take months to come back in. She said she thinks it's because God really likes to see those snaggle tooth smiles and I think she's right. But I can already see the new tooth starting to surface. The other top tooth is loose too, so pretty soon, he'll be missing both teeth. Maybe that's what he'll ask Santa for next Christmas. Although, I'm pretty sure they will be in by then.
Now that the holidays are over, and Tommy is no longer on vacation, we are back to the grind. John is back in school, which he is still doing well at, and today we got back to OT and PT for the first time in a month. It was good for both of us, since he had the day off of school.
Tommy left Saturday for an overseas trip. He will be gone a week and I have to say that I am already feeling slightly overwhelmed. We didn't have a nanny at all last week, so John and I spent A LOT of quality time together. So with Tommy being gone, and this being a 3 day weekend, we are spending even more quality time together, and I think it's wearing on me. I love my son to pieces, but sometimes I need a break. He really is time consuming. Tommy's dad came Saturday and is staying until tomorrow to give me a little help while he's out of school. While I appreciate the help he's been, I'm still the one doing all of the feeding and changing and most of the lifting, along with cooking and cleaning and laundry and everything else I do on a daily basis. So to say that I'm tired is an understatement. I feel my frustration level rising and I don't really know what to do to bring it back down. I think it will be a big help when he goes back to school tomorrow. I do treasure the time we spend together, but I need a break.
So that is about all for now. I will try and do a better job of keeping up with the blog. I hope everyone had a Merry Christmas and is having a great 2012!
Tuesday, November 1, 2011
Trick-Or-Treat
It's that time of year again, Halloween! It's always a lot of fun to get John dressed up and take him around the neighborhood. He can't eat the candy, so that's not the main focus for him. Although, mom and dad can eat the candy, so whatever he gets is just bonus. John really just enjoys being out and about and riding around the neighborhood. He's really a pretty good sport about dressing up too. His first Halloween, he was only 5 months old, so we didn't even take him anywhere. I bought a cute little pumpkin costume and put him in it long enough to take his picture. He fell asleep sitting in his chair with the costume on. Every other year, he has been a Disney character. So each year, it's a lot of fun to go to the Disney website and choose which character he will be this year. I thought it would be fun to do a blog post with pictures of him in all of his costumes over the years. It's fun to see him grow from year to year. I hope you enjoy it too.
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| My precious pumpkin, 2005 |
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| Mickey Mouse, 2006 |
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| Nemo, 2007 |
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| Jack Sparrow, 2008 |
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| Lightening McQueen Pit Crew, 2009 |
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| Peter Pan, 2010 |
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| Woody, 2011 |
Tuesday, October 25, 2011
Craziness!
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.
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 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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