Another great day, Day 70! Everyone came for brunch - no BBQ because of rain in the a.m. and again late in the day. But, Josh was friendly with everyone, talked to everyone, played with his train outside with Rosie for awhile (until mosquitoes got bad). Josh napped twice during the day - don't know if he's fighting a cold or if it's allergies but he was coughing some and sneezing with the watery eyes. The store brand of Claritin seemed to help so I'm leaning toward the allergies. Sure hope that's all it is - would hate to see him miss out on the Bravehearts this week. Josh had questions planned for Uncle Harry and Brad (do they have garages where they are are, etc.) and he sure asked them as soon as they both came in the door. Josh sat at the dinner table with all of us for brunch and again for dinner (ordered from Rosati's since we couldn't BBQ) - full table with food all over and he did great - ate like a pig and asked that Gramma help him! Josh even earned three stickers during the day, going to pee with minimal reminders. Went up to bed without any problem.
Today, Day 71 starts Bravehearts and, like I said, sure hope he doesn't have a cold. He's cool as a cucumber but hhhmm.... it would be such a bummer! On into Day 71!
Monday, August 9, 2010
Sunday, August 8, 2010
Day 69 into 70
What a great day Day 69 was! Nice, quiet Saturday. Josh wanted to eat breakfast outside so we had our oatmeal out on the sun porch. After that, Josh watched went in to pee all on his own (no reminder from me), and Blue's Clues for awhile while I mowed the lawn (was so hot, I had to stop twice to cool off!) and just tooled around the house. At lunchtime, I turned the TV off and said that was it for a long time. He wound up playing with his train a lot, doing his "recycling," even emptied the baskets into the garbage in the garage. After that, we both just crashed, napped for a bit. When Josh woke up, he went right into the bathroom, peed (although a bit late - his depends were wet), and then got a new depends that HE PUT ON ALL BY HIMSELF!!!! I supervised by just reminding him to hold where the blue line was and make sure he didn't put both feet in one hole. It took about 5 minutes, BUT HE DID IT!!!! YEAH!!! We played games after that for quite awhile, had supper, and then we watched Underdog (he was just cracking up with the flying scenes!) and then I turned on a Thomas movie that was on On Demand - he fell asleep during that. But, before he fell asleep, I looked up online when Thomas was coming to Union - next weekend - and asked him if he would want to go see Thomas even if there were a lot of people - he said yes. So, maybe we'll make a trip over to Union next weekend! When it was time to go up, he had slept on the couch for about 45 minutes, went up without any problem. He was so cute, it was taking him a little bit of time to get back to sleep. I had come back downstairs and heard him saying, "Gramma Bev, Hi Gramma Bev, Gramma Bev tomorrow." It was like he was practicing what to say to her! He got up a couple of times to play with the fan in his room, but he eventually settled back into sleep.
Yes, today is Day 70 on NV, and Gramma Bev is coming over. So is Boompah, Aunt Shirl, Rosie, Uncle Harry, Aunt Vicki, Brad, and maybe Mallory for a BBQ brunch, and for the day. Harry is heading back to Virginia today so they won't stay long. But everyone else will be here for the day - big brunch planned and then we'll do BBQ later in the day if it's not too hot out - supposed to be in the 90's and muggy - yuck. Tomorrow starts the therapeutic riding at Bravehearts - I don't want to talk about it too much today as I think it will build up his excitement and anxiety about it. Stephanie has it all planned out, though. She will be around during the school year for kidsitting on weekends if I want/need (yeah!!). I'm really excited about it, though. I think I'll give Stephanie a camera and maybe she can snap some shots of how the week goes. Then school starts! This summer has flown!
Into day 70!
Yes, today is Day 70 on NV, and Gramma Bev is coming over. So is Boompah, Aunt Shirl, Rosie, Uncle Harry, Aunt Vicki, Brad, and maybe Mallory for a BBQ brunch, and for the day. Harry is heading back to Virginia today so they won't stay long. But everyone else will be here for the day - big brunch planned and then we'll do BBQ later in the day if it's not too hot out - supposed to be in the 90's and muggy - yuck. Tomorrow starts the therapeutic riding at Bravehearts - I don't want to talk about it too much today as I think it will build up his excitement and anxiety about it. Stephanie has it all planned out, though. She will be around during the school year for kidsitting on weekends if I want/need (yeah!!). I'm really excited about it, though. I think I'll give Stephanie a camera and maybe she can snap some shots of how the week goes. Then school starts! This summer has flown!
Into day 70!
Saturday, August 7, 2010
Days 67, 68 and into 69
Well, I was so excited when I picked Josh up at camp on Thursday, Day 67! They were outside waiting and Stephanie said I was going to be soooo thrilled - I'd have a beach towel to wash! She said Josh finally went into the swimming pool!!!! YEAH!!!!! He sat on the edge with his feet in the water. He would say, "All done, out of pool!" and then he'd start splashing around and having fun. Then he'd say, "All done, out of pool!" and start splashing around again! She said he had a great time! He did pull a little girl toward him and she got a little scared - Stephanie talked to the mom and she said the girl was fine, the girl said she was fine just a little scared but she was OK. Not sure why/how it happened but at least everyone was OK. Stephanie said Josh had only 1 PNES during the day and there seemed to be less hitting and nervousness (coincidentally (?) less heat and humidity!). YEAH!!! Besides the pool, they had gone to Lippold Park to play frisbee golf, volleyball, and mini-golf - Stephanie said he did a great job and had lots of fun! Even no laying down or anything getting on/off the bus! YEAH!!
Thursday night, though, Josh would not come upstairs to bed. I'd been thinking about this for a few days and decided who is it hurting for him to sleep downstairs - we do sleeping bag camp-outs in the family room and we sleep on the floor so what would be the big deal (except getting upstairs in the a.m. to get ready to go for the day). So I said, fine, sleep on the floor on the hospital sheet - good thing, he was drenched in the a.m. (Day 68) since he didn't/wouldn't go pee before going to sleep!
As I expected, the a.m. (Day 68) was really rough - extreme uncooperativeness getting upstairs to use the bathroom and take a shower. Lots of struggling, etc. He finally did get upstairs (good thing I left a lot of time in the a.m.!) and actually went into the shower with no problem. When I dropped him off at camp, I told Stephanie about the night before and the rough morning, said he'd probably have a marvelous day - and he did! When I picked him up early (had psychologist appointment), they were waiting out by the pool - and he had gone in the pool again! They had gone for a pontoon ride (I think at Crystal Lake) and Josh loved it! Stephanie said he got on/off the bus without any problem, on/off the boat without any problem, wore the life vest without any complaint, ate his lunch without any problem - just a marvelous day! At the beginning of the week of camp, I said to the counselors that by the end of the week, he'd be having a great time - do I know my kid or what!
We went to see the new psychologist yesterday - when we got there, Josh got out of the car just fine, walked up the curb, and then went down on the sidewalk into an overload (not a full PNES). The doc must have seen from his window because he came out and said, "This must be Josh!" I said, "Yep, and this is why we're here!" Josh got up within less than a couple of minutes and went right into the office. I like this guy, he had some good ideas on motivating Josh to get up to pee and stuff, Josh talked up a storm, the doc suggested teaching Josh more self-calming techniques that he'll hopefully get (he had PECS of the "stop, think, breath" thing like on Blue's Clues taped to his wall - so I pointed it out to Josh and reminded him that Blue says the same thing!), he has a small group of kids that do yoga in a studio next to his office and he suggested doing that (especially since Josh used to do yoga - haven't done it much lately), and we'll be doing "immersion therapy" - putting Josh into situations/settings that are anxiety-producing and working him through them - starting slowly and working into the full situation (sort of like those "fear of flying" type therapies) - doc will even come out to the car to work on getting in/out and moving through the process of coming into/out of the building. Josh did great during the session, as I said talking constantly. Doc said at one point (he and I were talking and Josh wheeled his chair - we were all sitting in wheely office chairs - directly in between us - gosh, ya think that meant something??) that Josh clearly likes being the center of attention! Uh, yep! After the session ended, though, it took Josh just about an hour to get out of the office. At first he wouldn't get out of the chair (he was having too much fun wheeling around the office), so doc wheeled him out to the waiting room (doc said he really didn't want to do that since it would reinforce the behavior - duh - but he did it anyhow), and Josh went down on the floor. He just would not get up (at least doc saw this and what I'm dealing with!). At one point, doc said, "I can see how this is stress-inducing." I chuckled and said, "That's an understatement. My doc says I need to reduce stress in my life." Doc laughed and said, "Maybe your doc needs to take Josh for a day!" Another patient came in and doc had to start that session - Josh was still on the floor. He eventually army crawled out of the office/waiting area into the hallway, then crawled the hallway out the door of the building. Unbelievable. Once we were out, I said to Josh," I'm leaving." I went and got into the car, turned the air on, and just sat for about 5-6 minutes - literally and figuratively cooling off. I went back and told Josh he needed to crawl up the stairs (there are 4-5 stairs down to the doc's office) if he's not going to get up. He turned over to crawl, went up one stair, and then just got up and walked right to the car as if nothing was wrong. Again, unbelievable. I was so angry and frustrated! As I was buckling him in he started to say something and I told him, "I'm furious and I don't want to talk to you right now." It was a very silent car ride home.
When we got home, I brought in stuff from the car and Josh tossed his gym shoes into the front seat. I told him he needed to bring his own shoes in, and I just went in the house. Within seconds, I heard his car door close, he came in the house carrying his shoes, put them down and went right to pee in the bathroom. I went to sit in the living room - when he came in to the living room I told him I was still furious and I was going to lay down on the couch, that I still didn't want to talk. He went into the family room, turned on the TV (The Nanny was on - yuck - and he didn't even ask for a Blue or train movie!), brought me his hospital sheet (I told him I don't need it, he does), and went back into the family room when I turned down the offer of the hospital sheet. I sort of dozed but kept an ear out - he wound up falling asleep. A friend came over to drop something off around 5:30 or so - when I checked on Josh, he had put the hospital sheet down perfectly on the couch (underneath his rear) and was sound asleep. He slept until almost 7:15. Very rough getting him upstairs to bed (I thought about letting him sleep downstairs again but decided I don't want him to get into that habit, and the morning had been rough getting him upstairs - didn't want a repeat) around 9:30 or so.
I know Dr. Madamala had said, in passing and in relation to these laying down things, that Josh was testing me. Don't know exactly what the testing is for - does he think if he does these things that he knows bug the heck out of me that I'll leave him, so he's testing how far he can push me? Or are these things just happening just because?? Does he think the lack of visit/communication with P is because of something Josh did (although I tell him that Daddy loves him and he is working hard and that's why he can't see Josh but he'll see him when he can - don't know what else I can tell Josh!), so he's testing me to see whether I'll "stick around" if he does things that create these problems? I tell him all the time that I love him, that I'm always going to be here no matter what he does (although I also tell him that I certainly don't like some of the things he does!) - maybe he's testing to see if that's the case? I know it's pretty sophisticated thoughts, but with the NV he's been thinking more abstractly (imagination has increased, understanding and engaging in more jokes and humor, etc.), and, what can't be forgotten, is that he is a kid first and kids of divorce do oftentimes go through this kind of thing. Maybe this is all divorce-related? Who knows?? Hopefully, working with Straube will get us all through this with minimal lasting damage!
This a.m., Day 69, I woke up a bit early and came down to have my coffee. Josh got up around 7:45 or so, went in to pee, brought some shorts downstairs, and we've just been lazing around. I want to get the lawn mowed before it rains (thought I heard thunder a minute ago) so I better get moving on that. Maybe a quiet day, maybe not - only time will tell. On, into the day!
Thursday night, though, Josh would not come upstairs to bed. I'd been thinking about this for a few days and decided who is it hurting for him to sleep downstairs - we do sleeping bag camp-outs in the family room and we sleep on the floor so what would be the big deal (except getting upstairs in the a.m. to get ready to go for the day). So I said, fine, sleep on the floor on the hospital sheet - good thing, he was drenched in the a.m. (Day 68) since he didn't/wouldn't go pee before going to sleep!
As I expected, the a.m. (Day 68) was really rough - extreme uncooperativeness getting upstairs to use the bathroom and take a shower. Lots of struggling, etc. He finally did get upstairs (good thing I left a lot of time in the a.m.!) and actually went into the shower with no problem. When I dropped him off at camp, I told Stephanie about the night before and the rough morning, said he'd probably have a marvelous day - and he did! When I picked him up early (had psychologist appointment), they were waiting out by the pool - and he had gone in the pool again! They had gone for a pontoon ride (I think at Crystal Lake) and Josh loved it! Stephanie said he got on/off the bus without any problem, on/off the boat without any problem, wore the life vest without any complaint, ate his lunch without any problem - just a marvelous day! At the beginning of the week of camp, I said to the counselors that by the end of the week, he'd be having a great time - do I know my kid or what!
We went to see the new psychologist yesterday - when we got there, Josh got out of the car just fine, walked up the curb, and then went down on the sidewalk into an overload (not a full PNES). The doc must have seen from his window because he came out and said, "This must be Josh!" I said, "Yep, and this is why we're here!" Josh got up within less than a couple of minutes and went right into the office. I like this guy, he had some good ideas on motivating Josh to get up to pee and stuff, Josh talked up a storm, the doc suggested teaching Josh more self-calming techniques that he'll hopefully get (he had PECS of the "stop, think, breath" thing like on Blue's Clues taped to his wall - so I pointed it out to Josh and reminded him that Blue says the same thing!), he has a small group of kids that do yoga in a studio next to his office and he suggested doing that (especially since Josh used to do yoga - haven't done it much lately), and we'll be doing "immersion therapy" - putting Josh into situations/settings that are anxiety-producing and working him through them - starting slowly and working into the full situation (sort of like those "fear of flying" type therapies) - doc will even come out to the car to work on getting in/out and moving through the process of coming into/out of the building. Josh did great during the session, as I said talking constantly. Doc said at one point (he and I were talking and Josh wheeled his chair - we were all sitting in wheely office chairs - directly in between us - gosh, ya think that meant something??) that Josh clearly likes being the center of attention! Uh, yep! After the session ended, though, it took Josh just about an hour to get out of the office. At first he wouldn't get out of the chair (he was having too much fun wheeling around the office), so doc wheeled him out to the waiting room (doc said he really didn't want to do that since it would reinforce the behavior - duh - but he did it anyhow), and Josh went down on the floor. He just would not get up (at least doc saw this and what I'm dealing with!). At one point, doc said, "I can see how this is stress-inducing." I chuckled and said, "That's an understatement. My doc says I need to reduce stress in my life." Doc laughed and said, "Maybe your doc needs to take Josh for a day!" Another patient came in and doc had to start that session - Josh was still on the floor. He eventually army crawled out of the office/waiting area into the hallway, then crawled the hallway out the door of the building. Unbelievable. Once we were out, I said to Josh," I'm leaving." I went and got into the car, turned the air on, and just sat for about 5-6 minutes - literally and figuratively cooling off. I went back and told Josh he needed to crawl up the stairs (there are 4-5 stairs down to the doc's office) if he's not going to get up. He turned over to crawl, went up one stair, and then just got up and walked right to the car as if nothing was wrong. Again, unbelievable. I was so angry and frustrated! As I was buckling him in he started to say something and I told him, "I'm furious and I don't want to talk to you right now." It was a very silent car ride home.
When we got home, I brought in stuff from the car and Josh tossed his gym shoes into the front seat. I told him he needed to bring his own shoes in, and I just went in the house. Within seconds, I heard his car door close, he came in the house carrying his shoes, put them down and went right to pee in the bathroom. I went to sit in the living room - when he came in to the living room I told him I was still furious and I was going to lay down on the couch, that I still didn't want to talk. He went into the family room, turned on the TV (The Nanny was on - yuck - and he didn't even ask for a Blue or train movie!), brought me his hospital sheet (I told him I don't need it, he does), and went back into the family room when I turned down the offer of the hospital sheet. I sort of dozed but kept an ear out - he wound up falling asleep. A friend came over to drop something off around 5:30 or so - when I checked on Josh, he had put the hospital sheet down perfectly on the couch (underneath his rear) and was sound asleep. He slept until almost 7:15. Very rough getting him upstairs to bed (I thought about letting him sleep downstairs again but decided I don't want him to get into that habit, and the morning had been rough getting him upstairs - didn't want a repeat) around 9:30 or so.
I know Dr. Madamala had said, in passing and in relation to these laying down things, that Josh was testing me. Don't know exactly what the testing is for - does he think if he does these things that he knows bug the heck out of me that I'll leave him, so he's testing how far he can push me? Or are these things just happening just because?? Does he think the lack of visit/communication with P is because of something Josh did (although I tell him that Daddy loves him and he is working hard and that's why he can't see Josh but he'll see him when he can - don't know what else I can tell Josh!), so he's testing me to see whether I'll "stick around" if he does things that create these problems? I tell him all the time that I love him, that I'm always going to be here no matter what he does (although I also tell him that I certainly don't like some of the things he does!) - maybe he's testing to see if that's the case? I know it's pretty sophisticated thoughts, but with the NV he's been thinking more abstractly (imagination has increased, understanding and engaging in more jokes and humor, etc.), and, what can't be forgotten, is that he is a kid first and kids of divorce do oftentimes go through this kind of thing. Maybe this is all divorce-related? Who knows?? Hopefully, working with Straube will get us all through this with minimal lasting damage!
This a.m., Day 69, I woke up a bit early and came down to have my coffee. Josh got up around 7:45 or so, went in to pee, brought some shorts downstairs, and we've just been lazing around. I want to get the lawn mowed before it rains (thought I heard thunder a minute ago) so I better get moving on that. Maybe a quiet day, maybe not - only time will tell. On, into the day!
Thursday, August 5, 2010
Day 66 into Day 67
Well, mixed bag yesterday. Drop off at camp went a bit slow - Josh sat in his chair next to the car for a few minutes and then, after a PNES in the chair, walked in as if nothing happened (as usual). They wound up going to see Cloudy with a Chance of Meatballs - weather yesterday was yucky - and Josh did really well during the movie. Stephanie said Josh really liked the movie - he was laughing and getting all excited the way he does - really had a good time. The bus dropped them all off at the pool after the movie (weather cleared somewhat) but, by the time they were walking back over to the park building, it had started raining - not one of Josh's favorite things. Stephanie said he went down about 6 times just walking that short distance and it took over an hour to walk because of it. Much less PNES (only 3 at camp), but going down into minor overloads - she said she would say to him, "I'm not falling for it" or things of that nature and he'd get up. Darn rain! She said there was a lot of hitting as well - not other campers but her and other counselors. I apologized a whole lot, and no one was hurt, everyone understands. He walked to the car at pick up without any problem, walked into the office without any problem, and then sat on the couch in the foyer and had a PNES. After that, he was fine. He watched a little of the DVD while I read a transcript and then asked for the sleeping bag - slept for about an hour and a half. (Tom came in and said he wanted to talk about my current case - Josh was not asleep quite yet so I said give me 5 minutes - for Josh to fall asleep - boy, do I know my kid - 5 minutes later Tom and I were talking!) He is not laying down to rest at all at camp - Stephanie says he refuses and it's just too noisy as there are kids doing a lot of banging and yelling (hhmm... could be why the overloads and PNES). When we left, we picked up dinner and had a car picnic by the Metra in Elgin - saw three trains, ate, and then headed home. Bedtime was rough - lots of uncooperativeness. I didn't let him fall asleep on the couch - I was wiped and just wanted to go up to bed - not good. For some reason, he really does need to snooze on the couch before going up - maybe muscle issues/physically tired after the day?
Forgot to write the other day that there was one thing that I have noticed (yet another!) since being on NV - no drooling! Maybe because his speech has increased (constantly - CONSTANTLY- talking!), the muscles in his face and mouth are getting stronger/more toned and the drooling has become almost nonexistent - the only time he really does any drooling now is during an overload or PNES (when everything lets loose!). I mentioned it to Stephanie on Monday and she had a surprised look and said, "wow, you're right, I 've noticed that as well!"
Gonna be a hot Day 67 but at least much less humidity, so maybe Josh will have a better day. On the upside, the number of PNES has decreased since Monday, he is participating more at camp with other campers, he is making everyone crack up. Balance...
Into Day 67!
Forgot to write the other day that there was one thing that I have noticed (yet another!) since being on NV - no drooling! Maybe because his speech has increased (constantly - CONSTANTLY- talking!), the muscles in his face and mouth are getting stronger/more toned and the drooling has become almost nonexistent - the only time he really does any drooling now is during an overload or PNES (when everything lets loose!). I mentioned it to Stephanie on Monday and she had a surprised look and said, "wow, you're right, I 've noticed that as well!"
Gonna be a hot Day 67 but at least much less humidity, so maybe Josh will have a better day. On the upside, the number of PNES has decreased since Monday, he is participating more at camp with other campers, he is making everyone crack up. Balance...
Into Day 67!
Wednesday, August 4, 2010
Day 65 into Day 66
Well, they wound up going to Crystal Lake Beach and canoeing on Day 65. Needless to say, Josh didn't do the canoeing - he and Stephanie stayed on shore, played, and ate lunch. He did go to the pool after they got back to camp - he even came over to the pool! Stephanie is bound and determined to at least get his feet in the pool today - yeah! She said he had several PNES (although less than yesterday, she said one was quite long) - it was very hot, very humid and his sensory stuff is so aggravated in humid/hot weather, I'm sure the weather played a part in that. He did eat some of his lunch but didn't want the sandwich (I'm bound and determined to get him eating something besides PBJs! ;-) ) Stephanie said he used the big boys bathroom at the pool (yeah!). When I picked him up, he walked out to the car without any problem, walked into the office without any problem, and then went into a doozie of a PNES on the couch in the foyer. After that he was fine, watched very little of the DVD I had for him, and then just crashed - slept for about an hour and a half. When he woke up, he was wet and I had forgotten to bring another depends so he was in just underpants and shorts by the time we went home. He came inside without any problem - only minor encouragement needed - did his lay down on the floor thing, got up and walked to the bathroom, and went down on the floor at the door to the bathroom into another PNES - peed through. Damn. He was so tired and upset, he sat on the toilet for quite awhile and then just went up to bed. At least I got his meds in him, but no dinner and no milk. Damn. I sent an email, after he went to bed, to an old friend from the old school district - I have to find out exactly what happened there - there is definitely a connection between small bathrooms and his emotional stuff, and I have to be able to help him through this. I'm hoping someone in the old district will finally tell me what, if anything, happened.
Today is Day 66 - they are supposed to go to the McHenry County Fair - it's another hot/humid day so I don't know what is going to happen. Looks like rain so far... I asked Josh yesterday if he was having fun at camp and he said yes, he even talks about some of the people so he is getting something out of it but I can't help but wonder. It is a new experience for him every day and that is a good thing. Just wish it wasn't so difficult. The people at NISRA are great, though, and they are watching out for him. Sure hope next summer is a bit easier for all.
On with Day 66!
Today is Day 66 - they are supposed to go to the McHenry County Fair - it's another hot/humid day so I don't know what is going to happen. Looks like rain so far... I asked Josh yesterday if he was having fun at camp and he said yes, he even talks about some of the people so he is getting something out of it but I can't help but wonder. It is a new experience for him every day and that is a good thing. Just wish it wasn't so difficult. The people at NISRA are great, though, and they are watching out for him. Sure hope next summer is a bit easier for all.
On with Day 66!
Tuesday, August 3, 2010
Days 63 into Day 65
Interesting things on Sunday, Day 63. We wound up having a really quiet, relaxing day - stayed home, played, watched a little TV. But, the interesting thing - I recently said to someone that when P and I were married, I had this vision of family life - the MGM musical version with kids running in and out of the house, the back door slamming, all that picturesque stuff. When Josh came along, I realized the back door slamming and kids coming over to play was not likely going to happen - a life it took a long time to let go of. Well, I was wrong, and I don't have to give that up! On Day 63, Josh and I saw new neighbors moving in and Josh said, "I have snack outside, front door." We have a little bistro table and a couple of chairs on the front porch and that's where he wanted to have snack. Sure enough, my front door was slamming! Josh was going in and out, watching the neighbors (some teenage boys, I think maybe a younger kid but not sure, a boat, etc.), the screen door was opening/closing/slamming for about an hour! He never did eat the snack that was out there but it was sure fun watching him loving going in and out! Now, for those other kids running in and out...
We wound up driving over to the Huntley Rec Center to see where camp would be - what a great park! The building is beautiful, that park is fantastic, and the waterpark over there is small but perfect for kids (especially with disabilities!)! He was pointing out spots where his van driver from camp previously would drop kids off, where she would stop and call me at the office to let me know they were on their way - he knew all about the place from the previous camp! He was like a tour guide!! What a great day!
Yesterday, Day 64, well, it was the first day of camp. Josh said he was nervous so we talked about how it's OK to be nervous, and it's perfectly understandable with something new like that. But, I reminded him that Stephanie would be with him, and he knows about the camp place so maybe the day would go well. Hhhmm.. not so much. It took him a little bit to get out of the car but he did (Stephanie actually arrived just after we did so she was there to help get him into the building). He had his chair with him and sat in the chair outside the car for a couple of minutes, had a minor overload (not a full PNES), got up, we folded up the chair, and in he went. I got no calls during the day (good!), but when I picked him up Stephanie said the day was a bit rough. He had 6 overloads but only one full-blown PNES - they walked a huge amount - all over the park, the building, they found the vacuum (of course!), he didn't do lunch well but ate some and drank his milk, was rough. But, both she and the site director said it was not unexpected, that he wasn't the only one, and with all the new people/places/things/demands on him, not to worry, it will get better. I love these people!
I got Josh back to the office and he started to watch a DVD on my laptop but was soooo tired! All that walking and excitement at camp - he was exhausted! So I put out the sleeping bag on the floor of the library and he just crashed. He slept for about an hour and a half (I got some reading done but a friend came in and we wound up talking quite a bit - our recent vacations, work, etc.). When we got home, he wasn't so hungry but ate some dinner, watched just a little TV, and fell sound asleep on the couch. I was able to get bills done and some other work, but we both headed up to bed at 10:00 and we both were sound asleep shortly after that.
Today, Day 65, they are supposed to do a field trip with camp. Stephanie said either swimming or a movie - it's raining out now so I'm betting on the movie. That should be interesting to hear about! I don't know if it's to a theater or just to the library or NISRA for the movie - we'll find out! It's 6:30 a.m. - Josh is usually up and moving by now but I think he was sooo tired from yesterday, I'll let him sleep a bit longer. I also put something different in his lunch today - I think all the peanut butter he eats is starting to, as it did once before, cause a litttle bit of reflux so I'm going to try cutting down on the PBJs! We'll see how lunch goes!
Well, on with Day 65 - thunder, rain, lightening, and the garbage truck!
We wound up driving over to the Huntley Rec Center to see where camp would be - what a great park! The building is beautiful, that park is fantastic, and the waterpark over there is small but perfect for kids (especially with disabilities!)! He was pointing out spots where his van driver from camp previously would drop kids off, where she would stop and call me at the office to let me know they were on their way - he knew all about the place from the previous camp! He was like a tour guide!! What a great day!
Yesterday, Day 64, well, it was the first day of camp. Josh said he was nervous so we talked about how it's OK to be nervous, and it's perfectly understandable with something new like that. But, I reminded him that Stephanie would be with him, and he knows about the camp place so maybe the day would go well. Hhhmm.. not so much. It took him a little bit to get out of the car but he did (Stephanie actually arrived just after we did so she was there to help get him into the building). He had his chair with him and sat in the chair outside the car for a couple of minutes, had a minor overload (not a full PNES), got up, we folded up the chair, and in he went. I got no calls during the day (good!), but when I picked him up Stephanie said the day was a bit rough. He had 6 overloads but only one full-blown PNES - they walked a huge amount - all over the park, the building, they found the vacuum (of course!), he didn't do lunch well but ate some and drank his milk, was rough. But, both she and the site director said it was not unexpected, that he wasn't the only one, and with all the new people/places/things/demands on him, not to worry, it will get better. I love these people!
I got Josh back to the office and he started to watch a DVD on my laptop but was soooo tired! All that walking and excitement at camp - he was exhausted! So I put out the sleeping bag on the floor of the library and he just crashed. He slept for about an hour and a half (I got some reading done but a friend came in and we wound up talking quite a bit - our recent vacations, work, etc.). When we got home, he wasn't so hungry but ate some dinner, watched just a little TV, and fell sound asleep on the couch. I was able to get bills done and some other work, but we both headed up to bed at 10:00 and we both were sound asleep shortly after that.
Today, Day 65, they are supposed to do a field trip with camp. Stephanie said either swimming or a movie - it's raining out now so I'm betting on the movie. That should be interesting to hear about! I don't know if it's to a theater or just to the library or NISRA for the movie - we'll find out! It's 6:30 a.m. - Josh is usually up and moving by now but I think he was sooo tired from yesterday, I'll let him sleep a bit longer. I also put something different in his lunch today - I think all the peanut butter he eats is starting to, as it did once before, cause a litttle bit of reflux so I'm going to try cutting down on the PBJs! We'll see how lunch goes!
Well, on with Day 65 - thunder, rain, lightening, and the garbage truck!
Sunday, August 1, 2010
Day 61 into Day 63
The rest of Day 61, Friday, was pretty good, although Mom said Josh had one episode when he struck out at her. He wasn't getting up to pee so she was trying to get the "blue sheet" under him and he hit her in the face! She took his hand, looked right at him in the eyes and said, "You don't hit Gramma!" He was sulking still when I got home. Hhmm.... Other than that, Mom and Dad said he had one PNES (they said it lasted about 3 minutes) earlier in the day when they reminded him to go pee. This peeing thing is really the bane of everyone's existence! They said, outside of those two things, he watched no TV and played with toys all day, and with them. They were exhausted! I had brought dinner home from a restaurant near the office (they were celebrating 1 year in business - they're great - Culinary Fox Cafe - and the chef was doing BBQ all day long so I picked up a whole bunch for dinner), and a friend was coming for dinner as well. Josh was hesitant to come to the table but he finally did and ate like, well, a roast pig! Josh and Dad retired to the family room, and Mom, me, and the friend all played Scrabble for a while. Josh fell asleep on the couch and, when time to go up after everyone left, went up without problem.
Yesterday, Day 62, I finally got the blood tests for him. I had called the doc Friday and explained the 4 times I had tried taking Josh to the lab, and he did a quick referral to the outpatient clinic at Good Shepherd. Then I had called Good Shepherd to "warn" them about the tests, all that has gone on to get them, and about Josh. When we got to the clinic Saturday morning, they were prepared. It had rained and I figured if Josh went down with a PNES in the parking lot, he'd get soaked, so I went in, they had his name on a sheet of paper, and I asked if we could use a wheelchair to get him in - they were terrific. A young man came out to the car to push Josh in with the chair. When I went to the registration desk to check the paperwork in, Josh did go into a PNES in the wheelchair - lasted a couple of minutes. But, when it was over, he was scooting around in the chair, turning sharp turns, going in and out of waiting chairs - it was pretty cool seeing him running around in the chair like that, but also kind of disturbing that he's been in wheelchairs so much that he knows how to do all that. Oh well... can't change history! Anyhow, we waited a whopping 30 seconds before the young woman who I guess I had talked to on Friday came out and said to just come on back. They had 2 techs waiting, and they pulled a male nurse over from across the hallway. They were absolutely fantastic - they explained everything they were going to do, the techs held Josh's right arm to draw the blood, the nurse held his left, and I sort of draped my arm around his shoulders and talked to him. They got the blood in less than 2 minutes - found a vein immediately, worked quickly, were all smiles and talked to him all the time. I thanked them over and over for making this so easy and painless (sort of, I guess!). They put the gauze over the spot where the draw was, then wrapped a smiley face adhesive gauze thing over the spot to hold the plain gauze in place. By the time we got out to the car, Josh had that off and was handing it to me. We decided that Teddy Bear (who was with during the whole thing) needed to have it on his paw so Teddy wore the bandage. Piece of cake! I just kept telling him how proud I was of him for how well he did - no hitting, not even an attempt at hitting, etc.
After the hospital we went to Bravehearts to introduce Josh to the stables and horses, to prep for camp in a week. He didn't want to get out of the car at the barn. So, I went into the barn and was just watching the session that was going on. There was a tall young man waiting for his session - he said, "I know you!" and I asked where he knew me from. He said, "I know you from now!" So we chatted a little when an older woman asked if she could help with anything and I explained why we were there, that I had spoken with someone who said it was OK. The woman came out to the car (as we were walking, I warned her to watch out, that Josh is a grabber - she said she deals with it all the time, no big deal). The young man followed us out. Of course, as the woman approached Josh, he did grab out but she took his hand and said, "we don't hit, give me 5" - he did and she backed off. The young man was standing there so I figured enlist his help - I asked his name (Tony) and introduced him to Josh. Then I asked Tony if he was nervous the first time he came to Bravehearts and he proceeded to say he had been but he got over it and it was really cool to ride the horses and you get to wear a cool helmet to help your head - he went on and on. Then he said Josh shouldn't be nervous and he went back into the barn. Josh got out of the car, I put his gaitbelt on him just in case, and we walked in - he was in high guard, but he did it! Unfortunately, he did go down into an overload (not a full blown PNES) at the doorway to the actual riding arena. The older woman was there and I explained what was going on - she went to get Sarah (the person I had spoken with on the phone - she's the rec director) and we introduced ourselves. Josh got up, sat down in a chair for about 2 seconds, then went right over to the fence where he could see the horses. Tony had been there watching the overload and he was getting a bit nervous - you could see it in his face and how he was watching - but when Josh got up Tony said again to not be nervous. Josh is pretty excited about the idea of the horses, and that they have a basketball hoop to shoot hoops while on the horse! We'll see how it goes!
After Bravehearts, we went to Rochelle - a reward for doing so well at both the clinic and at Bravehearts. We saw 3 Union Pacifics and 1 Burlington, and we had a car lunch picnic. The most exciting thing about Rochelle, though, was that Josh actually got out of the car and into the bathroom at the little bookshop/museum! Whoohoo!!! This was the first time he had gotten out of the car at Rochelle since he got out in his wheelchair when he had the broken leg (we had gone with one of the homecare workers)! And, it was the first time in forever that he went into the bathroom there! Whoohoo!!! And, we kept the car doors open while we had our picnic - he usually asks to keep the doors closed and windows up (air on!) so the noise from the trains isn't as loud (go figure - loves seeing the trains but the noise is rough for him!). This time, though, doors open, trains went by, blew their horns pretty dang loud, and Josh did great! He even got out of the car (for a whole 3 seconds, but it was out!) after he was done eating!
By the time we got home, we were both wiped out. Josh watched a train movie while I took a snooze, then he fell asleep after I woke up. He snoozed for awhile, we ate dinner, and then we both kind of just vegged. Rough getting up to bed, though, and we both had to apologize to each other for the rough time. Here the day had gone so amazingly well and it had to end that way. Well, it happens.
This a.m., Day 63, Josh was up around 6:30 and came in to wake me (oh yeah!). He went in to go to the toilet on his own (as usual), and then wanted to just wash up - so I filled the sink and said, "OK, you do it on your own this morning" and he did! I went to make the beds and by the time I was done he clearly had washed up - water all over himself (even his hair and his cheeks - he hates washing his face) and the countertop, the floor, .... But he did it! He played in his room while I got washed and dressed and now we're sitting in the family room. I think he's going to snooze - he's watching Blue's Clues while I'm typing here and his eyes keep closing. Personally, even though we haven't had breakfast yet, a snooze sounds awfully good! We're going to head over to the Rec Center today to see where we're supposed to go to camp tomorrow - he's very excited about seeing his aide again (as am I! soooo happy she will be working with him again!) even though a little nervous about camp.
So, into Day 63!
Yesterday, Day 62, I finally got the blood tests for him. I had called the doc Friday and explained the 4 times I had tried taking Josh to the lab, and he did a quick referral to the outpatient clinic at Good Shepherd. Then I had called Good Shepherd to "warn" them about the tests, all that has gone on to get them, and about Josh. When we got to the clinic Saturday morning, they were prepared. It had rained and I figured if Josh went down with a PNES in the parking lot, he'd get soaked, so I went in, they had his name on a sheet of paper, and I asked if we could use a wheelchair to get him in - they were terrific. A young man came out to the car to push Josh in with the chair. When I went to the registration desk to check the paperwork in, Josh did go into a PNES in the wheelchair - lasted a couple of minutes. But, when it was over, he was scooting around in the chair, turning sharp turns, going in and out of waiting chairs - it was pretty cool seeing him running around in the chair like that, but also kind of disturbing that he's been in wheelchairs so much that he knows how to do all that. Oh well... can't change history! Anyhow, we waited a whopping 30 seconds before the young woman who I guess I had talked to on Friday came out and said to just come on back. They had 2 techs waiting, and they pulled a male nurse over from across the hallway. They were absolutely fantastic - they explained everything they were going to do, the techs held Josh's right arm to draw the blood, the nurse held his left, and I sort of draped my arm around his shoulders and talked to him. They got the blood in less than 2 minutes - found a vein immediately, worked quickly, were all smiles and talked to him all the time. I thanked them over and over for making this so easy and painless (sort of, I guess!). They put the gauze over the spot where the draw was, then wrapped a smiley face adhesive gauze thing over the spot to hold the plain gauze in place. By the time we got out to the car, Josh had that off and was handing it to me. We decided that Teddy Bear (who was with during the whole thing) needed to have it on his paw so Teddy wore the bandage. Piece of cake! I just kept telling him how proud I was of him for how well he did - no hitting, not even an attempt at hitting, etc.
After the hospital we went to Bravehearts to introduce Josh to the stables and horses, to prep for camp in a week. He didn't want to get out of the car at the barn. So, I went into the barn and was just watching the session that was going on. There was a tall young man waiting for his session - he said, "I know you!" and I asked where he knew me from. He said, "I know you from now!" So we chatted a little when an older woman asked if she could help with anything and I explained why we were there, that I had spoken with someone who said it was OK. The woman came out to the car (as we were walking, I warned her to watch out, that Josh is a grabber - she said she deals with it all the time, no big deal). The young man followed us out. Of course, as the woman approached Josh, he did grab out but she took his hand and said, "we don't hit, give me 5" - he did and she backed off. The young man was standing there so I figured enlist his help - I asked his name (Tony) and introduced him to Josh. Then I asked Tony if he was nervous the first time he came to Bravehearts and he proceeded to say he had been but he got over it and it was really cool to ride the horses and you get to wear a cool helmet to help your head - he went on and on. Then he said Josh shouldn't be nervous and he went back into the barn. Josh got out of the car, I put his gaitbelt on him just in case, and we walked in - he was in high guard, but he did it! Unfortunately, he did go down into an overload (not a full blown PNES) at the doorway to the actual riding arena. The older woman was there and I explained what was going on - she went to get Sarah (the person I had spoken with on the phone - she's the rec director) and we introduced ourselves. Josh got up, sat down in a chair for about 2 seconds, then went right over to the fence where he could see the horses. Tony had been there watching the overload and he was getting a bit nervous - you could see it in his face and how he was watching - but when Josh got up Tony said again to not be nervous. Josh is pretty excited about the idea of the horses, and that they have a basketball hoop to shoot hoops while on the horse! We'll see how it goes!
After Bravehearts, we went to Rochelle - a reward for doing so well at both the clinic and at Bravehearts. We saw 3 Union Pacifics and 1 Burlington, and we had a car lunch picnic. The most exciting thing about Rochelle, though, was that Josh actually got out of the car and into the bathroom at the little bookshop/museum! Whoohoo!!! This was the first time he had gotten out of the car at Rochelle since he got out in his wheelchair when he had the broken leg (we had gone with one of the homecare workers)! And, it was the first time in forever that he went into the bathroom there! Whoohoo!!! And, we kept the car doors open while we had our picnic - he usually asks to keep the doors closed and windows up (air on!) so the noise from the trains isn't as loud (go figure - loves seeing the trains but the noise is rough for him!). This time, though, doors open, trains went by, blew their horns pretty dang loud, and Josh did great! He even got out of the car (for a whole 3 seconds, but it was out!) after he was done eating!
By the time we got home, we were both wiped out. Josh watched a train movie while I took a snooze, then he fell asleep after I woke up. He snoozed for awhile, we ate dinner, and then we both kind of just vegged. Rough getting up to bed, though, and we both had to apologize to each other for the rough time. Here the day had gone so amazingly well and it had to end that way. Well, it happens.
This a.m., Day 63, Josh was up around 6:30 and came in to wake me (oh yeah!). He went in to go to the toilet on his own (as usual), and then wanted to just wash up - so I filled the sink and said, "OK, you do it on your own this morning" and he did! I went to make the beds and by the time I was done he clearly had washed up - water all over himself (even his hair and his cheeks - he hates washing his face) and the countertop, the floor, .... But he did it! He played in his room while I got washed and dressed and now we're sitting in the family room. I think he's going to snooze - he's watching Blue's Clues while I'm typing here and his eyes keep closing. Personally, even though we haven't had breakfast yet, a snooze sounds awfully good! We're going to head over to the Rec Center today to see where we're supposed to go to camp tomorrow - he's very excited about seeing his aide again (as am I! soooo happy she will be working with him again!) even though a little nervous about camp.
So, into Day 63!
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