tag:blogger.com,1999:blog-301359152024-03-06T02:36:16.893-05:00Living on the SpectrumOur Journey Through the World of Severe AutismAmyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.comBlogger442125tag:blogger.com,1999:blog-30135915.post-21118183155090546062016-02-21T13:53:00.003-05:002016-02-21T13:53:55.463-05:0012!!!If you have not been reading or following our facebook page, first I will say "please do!". Simply because it is easier for me to update and load things up to that page than this one. :) Plus, I am on FB more than Blogger.<br />
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A LOT has happened over the last year and a half or so. We will start with what has been going on since November of 2015. The school year was rocky from the start. He had developed some awful behaviors and things were only getting worse. The school called us one day and said that he could not return until he had completed another inpatient stay at a child psych unit. WE did not feel like he needed that again, so after many, many meetings and hiring an advocate, he is now being instructed in our home (by his staff from his school, and his teacher from the last two years). We are also now seeing a new psychiatrist, a new pediatrician, and are involved in family therapy. It has taken us months to get things sorted out to where we are at now, and of course our journey continues. <br />
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As of now, Nick just turned 12 years old! He has had some huge anxiety issues that we think have been the culprit of his decline behaviorally for the past few months. He was not sleeping very well, having obsessive thoughts, panic attacks when going outside, aggression, not eating very well and losing weight, physical things like twitching and clenching his jaw, and could not function at school-hence the behaviors. <br />
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Our former psychiatrist did not feel comfortable treating him any longer, so we had to find a new one. We finally saw him for the first time last Wednesday and he increased his clonidine and changed some of the times we administer the other meds to optimize sleep potential. The difference has been amazing so far. I know it may not last very long, and I know we will have to change things again as he is still growing (last check up he is 5'1"), but for now, he is doing much better. We are working on more independence in doing tasks like laundry, dishes, self care, and all that stuff on top of his academics. We are also doing more exposure therapy to get him through his anxiety. All of this makes for a very busy week usually, and becoming too "lazy" to write long and thought out posts such as this one :) By the end of the day, I simply want to curl up and do nothing. So, follow our FB page for all the latest and greatest :) Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-67653757784025490132014-11-27T00:34:00.001-05:002014-11-27T00:34:52.851-05:00Happy Thanksgiving!!I sit here on this eve of Thanksgiving watching a marathon of Christmas light decorating on TLC. Not sure really where to go with this post. It may be one of those posts that is all over the place.<br />
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School started in August, and things really did not improve with Nick. He was still sleeping in class, and just not being his usual self. I also started back to school and things were busy around here.<br />
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At this point Nick was engaging in SIB sometimes over 100 times a day, not only was he sleeping in class, but would also sleep for 3-4hrs once he got home. He would just come right off the bus and go straight to the living room to lay down. Not even wanting a snack or drink.<br />
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In August, we also saw a specialist about one of his testicles being bigger than the other. She concluded that it was a hydrocele. We were scheduled for surgery Oct 2nd.<br />
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We made it through September, seeming to get used to this "new normal", but not liking it at all. This is a kid who was no longer participating much either in school or in life really. It was sad. A lot of the time his aide would come and Nick would be passed out, so we would have to re-schedule his hours. He started moving his hours to later in the evening when there would be a greater chance of Nick being awake.<br />
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Oct 1st I attended a meeting at Nick's school. This was unlike all of our previous meetings. We had people from the school district there, I brought our case worker and another mental health person, and some other people that I am sure I am forgetting. This was a meeting to talk about what to do. His school had done all the assessments they could think to do, he "failed" all of them. Meaning, they could not find any consistency in his behaviors. Hospitalization was talked about, but we wanted to wait until after he had his surgery to see if things improved. I think I cried all the way down Peach St. that day. No one wants to make this decision.<br />
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Oct 2nd comes and we take him in for the surgery. All goes well, but the doctor did tell us there was more involved than we all thought. She took care of the hydrocele, and while he was there, she went ahead and did a more thorough exam, since he was under anesthesia and not moving around constantly. She discovered he also had some penile adhesions, so those were also taken care of. Little guy was a trooper as always. We gave it a week or so to heal up and see what we were dealing with behavior wise after that. At the next meeting though, we put in the referral for him to go inpatient. But, also at that meeting, we decided to try one last medication. Since a lot of his symptoms also fit with depression, and we all thought that was a possibility, we tried Remeron. It was the last hope really.<br />
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I was at his school on Oct 31st. He had been on the new med for about 2 weeks. And suddenly it seemed he was making a nice turn around!! Everyone was excited to see the old Nick coming back!! He was participating!! Even initiating!! He was happy! They told me they were wanting to try getting him back to where he was before with things like playing, and doing tasks. Did I mention that he had also been declining 'academically'? Not making forward progress on his IEP goals? He was doing so good, that this was discussed and I was so happy. It seemed we finally had our boy back! While I was there, the inpatient unit called to say they had a bed available and ask if we wanted it. Everyone was so impressed with his dramatic progress that we ended up declining the bed. Unfortunately, in true Nick fashion, this was short lived.<br />
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So, here we are now, November 27th. He has been sleeping in school again, twitching, jerking, sudden aggression, etc. It is all back. We put in another referral for inpatient about 2 weeks ago, and it is just a matter of time now. Going from how long it was last time between the referral and getting the call, it should be the end of next week before we hear anything. The timing would actually work out for one. My semester is coming to an end, and would have more time to visit and attend meetings.<br />
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In other news, he had a great Halloween!!! The best yet really! He dressed up as a vampire and we took him out trick or treating. He stayed out for an entire hour!! It was wonderful!!!<br />
Excuse the grainy Ipad photo.<br />
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I am also now part of a non-profit group in our town for autism support. We are just getting it started and have only had one meeting so far, but have another one planned for this weekend. Made new friends definitely. Can't wait to see where the group goes from here! Registered for next semester and slowly accomplishing all my required credits. I have discovered that I really enjoy working with the kiddos in Nick's school :) Well, that is pretty much everything that has been going on since I last wrote. Michael is in full teenager mode. 15 and moody. Trying to get him interested in something career wise. He has inquired to several colleges, and has expressed an interest in public health, so we will see. He was going through his own troubles earlier this semester, but with counseling he seems to be doing better. Hopefully things slow down next year?? I know I say that every year, but somehow we never get there. One day.<br />
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Just want to wish everyone a Happy Thanksgiving! Hope you and yours have a wonderful day tomorrow (or today? since it is after midnight here now). I better get to bed, mister wakes up early! Good night!!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-85559735026663175392014-08-11T07:21:00.004-04:002014-08-11T14:55:19.217-04:00OverdriveIt is 6:50am and Nick has been going strong since 4:00am. I know this because I heard him in his bedroom doing scissor kicks on his bed, laughing and carrying on. I let him be until 6am, when I had to wake Michael up for soccer camp. His room was a mess, and he had undressed himself...this is a normal occurrence. I get a new pull up and check the pajamas he was wearing for any signs of urine. I notice that these are not the ones he wore to bed, which means that he was changed in the middle of the night by hubby. This is also a rather normal occurrence. So much laundry.<br />
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By 6:40am he has already had his morning medications, been changed now twice, and working on his second cup of milk. I have already been attacked once. Nick is working himself up into a frenzy. He is over stimulating himself by being himself. Flapping like crazy, toe walking, more flapping, making his usual happy noises. I wait for the inevitable. It comes minutes later. He is in the kitchen and suddenly there is quiet. It is followed by him running towards me trying to hit me half heartedly. I tell him to go sit on the ottoman, and he does so. He has already had a couple of his tics this morning too-I can feel it is going to be a craptastic day. I hope I am wrong.<br />
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7:02am: He is now laying down on the ottoman by our heater. Meds have seemed to kick in and he is calm. This is how every single day starts. Handling such things at such wee hours of the morning is why we live on caffeine. It is also most likely the reason why I look the way I do by 8pm every night. A day dealing with all of this should be an Olympic event.<br />
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Nick is a 10yr old, 80lbs, 4'10" toddler. Think about that for a second. It has gotten past the point of one person being able to handle him alone in public. Nick gets overstimulated very easy. I don't think people realize just how easy this happens. Numerous times a day he will request to have his music on. Which is awesome. We let him listen to it. On plenty of days it will be on no more than 5 minutes and he goes from being happy, to attack mode. We turn it off. He will ask for it again after he is calm. We turn it on, and it is the same song and dance for the entire day. This happens with the tv, ceiling fan, lights, toys, computer, ipad, you-name-it. He will want to go somewhere; so we take him out for maybe a simple walk or trip to the store. You guessed it. Minutes later he goes into rage mode. Sometimes during a rage his tics come out, which leads to more rage. Sometimes it happens after a rage-which of course leads to more rage, sometimes his tics are the cause of his rage. Either way, tics and rage often go hand in hand.<br />
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7:20am: Nick is asleep. We will see how the day goes.<br />
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10:45am: Nick has awoken from a nearly 4hr nap. He is changed again and this time I actually get him dressed. He has another tic. I think this one is caused by Juno jumping up and down beside him. He wants to listen to his music and he turns on the ceiling fan. I have a happy kid now, so I just sit and wait for what will eventually come. But for now, he is happy. I go down stairs and put in a load of laundry-the clothes and sheets from last night. There are three baskets awaiting folding. I could go ahead and chance doing these now, but I wait. See, if Nick cannot get a hold of me during a rage, he will turn to something in the house, most vulnerable is well, everything. That is one thing about having a "toddler" who is nearly 5ft. Things are not out of his reach, and he can do some real damage. Both to himself, and our house. An example? During his rages he has broken TWO flat screen TV's, put his hand through a glass storm door, and has ripped off three drawers in his dresser.<br />
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11:25am: Of course. The phone rings. The nurse is informing me that his ultrasound is scheduled tomorrow at 9am (we think his hernia has come back). He goes into over-stimulation mode as I am trying to write the information down. He is smacking me on my back repeatedly. I wonder if the nurse can hear the whacks over the phone?<br />
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11:29am: Another attack. His music is now off and he is sitting on the couch. Welcome to my world folks.<br />
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11:40am-12:10pm: Start cooking him some lunch. I am in the kitchen and he is in the living room moving the ottoman. He moves it directly under the ceiling fan. He steps on it, and I come around the corner just in time to see him jump up and try to grab one of the fan blades. I yell at him to get down. He complies. I go back to cooking his lunch and he proceeds to get up a second time and do it again. I yell at him to get down once more. By this time, his lunch is ready. He eats, and we are able to finish up some dishes without too many problems.<br />
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12:13pm: As I am writing this, he is on the porch with dad. I hear the dreaded screams that warn me of a likely bigger aggression on the way. He has been on this up and down roller coaster all day. Hubby manages to calm him down, and for now, we have avoided it.<br />
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12:15-2:30pm: Finally able to take a shower! Nick's little friends came over briefly. And yes, they ARE little. Like 4-5yrs old. He loves having them over, albeit in very small doses. And he does not "play" with them. He lays on the couch stimming while they play with each other. He knows they are there, and is happy, and they come up to say Hello to him every few minutes. That's about all the interaction he can tolerate. Needless to say, they get bored pretty fast, and usually leave after a little while-but it's okay-they come back in spurts throughout the day. After my shower I folded three baskets full of laundry while hubby watched Nick. During this time Nick threw his chips twice, and tried to grab the ceiling fan three times. I cleaned out some old clothes that Nick has outgrown to make room for the clothes that were handed down to him from his big bro. We put clean sheets on Nick's bed and cleaned his room up. By this time it was time for his afternoon meds. Have seen quite a few of his teeth clenches today.<br />
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2:30-3pm: Nick has been in a decent mood (YAY!) so we played around for a little while.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-32884085817108980792014-07-20T11:13:00.002-04:002014-07-20T11:13:17.287-04:00Running on EmptyHello everyone!! I know I have been so bad about blogging this year, and for that, I apologize. A lot has been going on that needed my attention. It still does. It never ends.<br />
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I finished my sophomore year of college. Barely passing my statistics class, but I passed, and that is what counts. Next semester will be even busier with two different practicums at two different schools. One of them will be at Nick's school-so that should be interesting.<br />
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Michael turned 15 this year! I cannot believe it. I know I say that every year, and every year it is true. Since we moved into our house last year, he has been asking for a dog. It was awesome. The evening before his birthday, we told him we were going out to celebrate then because on his birthday I had an evening class that I could not miss. We took him to the animal shelter and picked out a dog. We ended up not getting the one we had actually inquired about, but another dog. We brought Juno home on May 1st, which is Michael's birthday. I don't think I have seen a happier kid!<br />
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Less than a week after bringing Juno home, we had to take her to the vet. She had complete her treatment for kennel cough at the shelter, at least we were told she had. But she was getting worse with each passing day. By the time we took her to the vet, she was not eating or drinking and having bad fits of coughing. It turned out to be pneumonia! She stayed at the vets overnight and got IV fluids and antibiotics. She came home again the next day and over the next three weeks she finished her medications, began to eat and drink, and was once again playing. Happy to say that now she is in perfect health!<br />
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My mom came to visit us for a week at the end of May. It was awesome to have her here to talk to, shop with, and just help around the house. I never ask for it, but she always ends up lending a hand.<br />
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Nick continues to have rage issues and tics. The tics seem to effect his behavior. The more aggression we see, the more tics. His self injury was also on the rise again just a couple weeks ago. His school did not know what to do, and this is an autism school people. For the first time in two years, we were called down to observe him. His neurologist thinks this is strictly a mental health issue, everyone at his school thinks it is more of a neurologist issue, with possible mental health issues. They are strongly suggesting we get another opinion from a place like Kennedy Krieger, or somewhere else that deals with autism AND neuro issues at the same time. They tell us this is not all to be blamed on just autism. His school is trying one last method to try and sort out his problems, and it seems to be helping-although it has only been a few days.<br />
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This weekend has been the worst one in a long time. His sleeping is all out of whack. For the last two days he has only taken naps. The longest stretch of sleep he has done has been from 9pm-midnight. He may take two hour naps throughout the day, but the rest of the time seems to be filled with lots of aggression. We are exhausted. He is regressing again behaviorally. I just feel like we are losing this battle.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-7261286664998483712014-02-13T22:43:00.001-05:002014-02-13T22:43:09.792-05:00Ten Years Old!!My little baby turned TEN years old yesterday! I can't believe it! We held a little family party for him on Sunday. Nothing much, just a few presents and cake. Nick thoroughly enjoyed the cake :) He ate approximately two pieces of it, the third piece he started to have fun flinging it around. I can only let him have so much fun before it starts getting out of hand :)<br />
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He has been doing great!!! For his birthday he picked out another stuffed "Sully" and it is so cute to see him gather up all three of his "Sully"s and 'play' with them. A few days ago, he thought the smallest Sully needed a bath in the toilet, with the other two watching from the floor. He was quite pleased with himself! He also likes to stand in front of the bathroom mirror and chat with himself. He cracks himself up!! It can be 5am when he does this, and I just lay there silently laughing at his antics :) He has just been a Mr. Personality recently and we are loving it. He likes typical pre-teen things like music, and now he is getting into watching The Justice League. One of his absolute fave musicians is Weird Al Yankovic!! He has a lot of interests ranging from household appliances to watching ice hockey videos, and everything in between. When his aide is here, Nick keeps him busy surfing YouTube for whatever Nick can think of. It is quite funny really. He parks himself in front of the computer and Dupri sits right beside him. Who knows? Maybe one day he will communicate via a computer keyboard.<br />
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We are all doing good and keeping busy during this crazy winter. We have had 107 inches of snow this year. I can't remember what grass looks like LOL. We have had temps well below zero, the kids have had four snow days (a rarity in our area!). I think today was the first day we broke 20 degrees for a long time and it felt so warm!!! Other than that, I got nothing. Things have been quiet. Stable. We are getting Nick back and we could not be happier.<br />
<br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-16718318091236142292014-01-18T20:12:00.001-05:002014-01-18T20:12:54.493-05:00Happy New Year!!!I know I am a little late on that, but better late than never right?? Our New Year's Eve was pretty low key. We are not really your partying type...if you have not noticed LOL.<br />
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The boys went back to school on January 2nd. Two days later Nick came down with a pretty decent cold and stayed home for the next few days. That week was all screwed up anyway because we had a blast of cold and snow (mostly cold. wind chills were a brutal -20f!) and the schools were closed(!!) Tuesday, and had a late start Wednesday. I kept Nick home until Thursday anyway because the kid could barely muster any strength to stay up for any length of time. By Thursday, everything was back to normal routine.<br />
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I had a meeting with our county care management, and nothing is changing with that. We are still going to get 10 hours a week with his support staff-which he loves. His BCBA will also be designing some trials/goals for him to start working on while he is here with Nick. On Wednesday I had a meeting with Nick's team at school. Unfortunately, his aggressions are going up once again. He was only at 8 per day and now he is at 16 per day. Everything else they reported was going great! So, maybe it was just that his schedule has been all wonky and once we get settled into the year, things will go down again. We hope so anyways!<br />
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Last weekend I noticed he was having some fairly decent staring spells. The kind where he will not respond to you. He had about three of them that I was able to notice, and I am fairly certain he had some yesterday. He is already taking Depakote, so it's really just a watch and see thing. He has another neurology appt set up for the beginning of April. Of course, if things get worse we will not wait for that appt.<br />
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I am starting back to school after having a nice 6 week break. Taking a full load of classes again this semester. Michael wants to take piano lessons, and do spring hockey. 2014 looks to be just as busy as 2013 was. Hope everyone has a great weekend!!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-70429142692601273842013-12-26T21:36:00.000-05:002013-12-26T21:36:01.499-05:002013....Year in ReviewTo say that I am happy to put 2013 behind us would be an understatement. I can only hope that next year will be better. With much less medical stuff going on. Here are the high lights from this year, or more or less, high LOWS.<br />
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<i>January: </i>Things started off crappy. Right on January 1st we found out about a death in the family. Way to welcome in 20<b>13,</b> I should have known right then that this would be a year to be reckoned with<b>.</b>We made the decision to look at buying a house, and started the process with the VA. <i>January 25th, 2013: </i>We went to look at a house around 4pm that evening. Nick was absolutely fine. Running around, giggling, having a grand old time exploring the open house. 30 min after we got home all hell broke loose. Screaming, jerking, screaming again, jerking more, becoming aggressive, self injurious, etc. This continued for three solid hours before we took him to the Emergency Room. Something had to be wrong. Nothing came up. We took him home after speaking with the hospital psychiatrist under her orders to decrease his risperdal. We thought that could be the culprit. Thought it was just a fluke thing and it would be over. <b>WRONG. </b>We endured these episodes all weekend. Every 15-20 minutes. By Monday, January 28th, we had a prescription for Ativan. It seemed to work, although, temporarily. He went back to school January 29th.<br />
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<i>February: </i>Nick had a new morning ritual of screaming and swiping everything off the bathroom counters. It now takes two of us to get him ready for school. In between scream fests we dress him and brush teeth. His psychologist makes a 2.5 hour housecall and sees one of his episodes first hand.<br />
February 12: Nick turns 9 years old!! February 14th: He starts Depakote. The Ativan along with risperdal were not cutting it any longer. Still having 30+ episodes daily. February 16th: First day in a MONTH that he did not wake up in a complete rage.<br />
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<i>March: </i>Start it off on the 1st with a double ear infection. Yay. Start the process to get referrals to Pittsburgh Children's Hospital for neurology. Still having 20+ episodes daily with increasing jerking movements. Self injury is also through the roof.<br />
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<i>April: </i>One early morning rage fest leads to our second broken flat screen tv in two months. Increase his depakote since he is now back to waking up at night in a rage. After the increase he is once again sleeping though the night and jerking less.<br />
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<i>May: </i>May 1st, Michael turns 14 years old. We celebrate it in the Emergency Room. Why? He broke his arm in two places by falling during his soccer game. Get home close to midnight. Wake up hours later to take Nick down to Pittsburgh. Depakote is increased again because we are still dealing with these violent episodes. 24hr EEG comes back normal. Schedule his MRI.<br />
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<i>June: </i>After a few e-mails to his neurologist with videos of Nick doing his odd movements, he wants us to see an epileptologist.<br />
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<i>July: </i>We get a miracle! A few days without any jerking or twitching!! Good days at school as well!! Did not last long though. Start inquiring about a protective helmet for his head. The bruises he had were scary looking. Close on our new house!<br />
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<i>August: </i>Move into our new house. Things with Nick are going along okay at best. We will take it. But it never lasts long. Michael starts his freshman year in High school and is on the Varsity soccer team. He starts complaining of trouble breathing when he is at practice. We think it is just because he is out of shape. School starts for both boys.<br />
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<i>September: </i>Nick's team at school urges me to get a second opinion at the Cleveland Clinic regarding his outbursts/jerky movements. Yes, we are still dealing with them. Although it seems to have stalled out around 20+ a day.<br />
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<i>October: </i>Psychiatrist starts him on Clonidine. We HOPE this works. I am alarmed at how tired this new medication makes him and voice my concerns about possibly taking him off it to his team at school. I stick it out, waiting for a miracle. We go to Oktober fest and take the kids out for Halloween. Nick makes it an entire 30 minutes trick or treating! He is even excited about it. Progress at last!<br />
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<i>November: </i>We finally start seeing the benefits of Clonidine! The Wow factor has come! Nick goes to Cleveland Clinic and we get a more *definitive?* diagnosis of severe anxiety. (With Nick, everything is rather *severe*. The kid goes BIG with everything :) ) ALL of his behaviors are down to SINGLE DIGITS!! I am talking that we go from 60 episodes daily in Jan, hold out at around 20+ for months, and now are LESS than 5 daily!!!! A true MIRACLE! His self injury is also GONE. <i>November 12th: </i>Take Michael to the pediatrician because he has had a cough for a while, and on this day he goes to the school nurse unable to catch his breath. Turns out to be asthma. He now carries an inhaler everywhere he goes. We have to educate ourselves on a whole new health issue now. We get through Thanksgiving without any major incidences. Hardly even a minor incidence. All of us actually ENJOYED the holiday!<br />
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<i>December: </i>Nick continues to do rather well on the Clonidine. He will still wake up sometimes at night, and tends to wake up early in the morning, but he is happy. I am not being attacked by a raging child while I sleep anymore. His bruises from near constant head banging are gone, and his rage attacks are short lived. He is easily redirected, and able to calm down. The Clonidine calms him and after his morning dose he will usually nap for a bit. Which is ok. He is happy. His personality is once again shining through. Our days are no longer filled with attack after attack. They are filled with him saying he wants to hear "Roar", or "Best", being mischievous, laughing, smiling, and being "social". He wants to go places! He is enjoying life again! I can only hope that this lasts for 2014 and that we are done with medical issues for a long time! I don't know what next year has in store for us, but I certainly hope it is better than 2013. Happy Holidays everyone!!! <br />
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<br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-89359126699019971792013-11-14T11:50:00.003-05:002013-11-14T11:50:42.956-05:00Anxiety......It has been a couple of months since my last update, so let me see if I can catch up on everything. School started and it has been busy as usual. I am taking four classes this term-which has been a bit of a stretch trying to manage everything; but has been okay. Tuesdays and Thursdays are the worst right now. I have classes at 8am, 1:30pm, 4pm, and 7pm on those days. Then on Wednesdays I also had practicums to go to, and meetings with Nick's school team. The semester is coming to an end in just four more weeks, then I have a break, and then Spring semester starts.<br />
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Michael is getting straight A's in school! He is now in the ninth grade. He stands 5'4" tall and is 120 lbs. At the beginning of the school year he came down with what we thought was just a typical cough. He complained of being out of breath and feeling like he was breathing through a straw. We just thought it was because he had started soccer on the Varsity team and that he was just out of shape. He had practices twice a day that involved a lot of running. We just chalked it up to that. Last week we get a note from the school saying that there was a confirmed case of whooping cough-and since Michael still had fits of coughing, we took him to the pediatrician to get it checked out. Turns out he is now suspected to have exercise induced asthma! We left the office with three new prescriptions. One is an antibiotic in pill form that he has to take for 5 days (just in case he does have some infection-his chest sounded rattly), one for an inhaler, and one for a spacer. We go back the week of Thanksgiving for a follow up. This kid wants to do so many things in life. He has lofty goals like attending Harvard or West Point, becoming a para-rescue man, and joining the Air Force. His best friend in school is in the ROTC program, and Michael cannot wait until he can sign up next year! This kid is going places!!<br />
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Nick has continued to have sudden rage episodes with jerking, despite us being "harder on him" as per the last neurologist visit, so we went and got a second opinion from the Cleveland Clinic. We drove there last Friday and presented the neurologist with all the documentation of these events that had been written up by members of his team at school. They think he has severe anxiety and recommended we put him on an SSRI like zoloft. Clonidine was added to our med list in early October, and I am happy to say that he is doing much better! We still see sudden rages and some twitching, but his self injury has made a drastic improvement! Since he is doing so good right now, we are not rushing into any med changes, and will discuss a plan at the next team meeting.<br />
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Halloween this year was wonderful!! Both boys were able to wear their costumes to school on Halloween :) Michael was Dr. Who, and Nick was a Minion. I took Nick out trick-or-treating with his aide, and we were actually able to stay out for a half hour! The only time he was afraid was when the train would come by. He would bury his face and drop his bucket. After that was done though, he was able to persevere and get some candy. He was so drained after 30min, that he just came home and went upstairs to his room. But he did it!!<br />
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In case I don't get on here again for a while, hope everyone has a wonderful Thanksgiving, and Happy Holidays!!<br /><br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com4tag:blogger.com,1999:blog-30135915.post-32119468106597000002013-08-22T11:24:00.001-04:002013-08-22T11:24:08.412-04:00All Moved In!!We are finally settled into our new house and life is returning to its crazy-hectic-normal state. My only wish would have been that we could have moved in earlier in the summer when Nick was in school, but it did not work out that way. It took us a full week to get everything out of the old apartment and settled in to the new place, but now we are DONE!<br />
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The first thing we had to do was enroll the boys in school. We are in a different district, but since we were not moving from out of state like before, it was much easier! I am still waiting to hear back from the school district to confirm transportation for Nick to his school, but that should not take too long. Michael is at his high school orientation right now with dad. I can't believe he will be in 9th grade in less than a week! Where did the time go? He is now on the varsity soccer team and getting his butt kicked twice a day by his coaches :) at practice. He is one of only 3 freshmen on the team, the rest are all juniors/seniors.<br />
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As for mister Nick; after a couple of weeks of no jerking, it has started to come back. He had a bad episode when his aide was here last week. His aide actually ended up getting smacked in the face by him. Smaller ones are still happening daily, but we have seen the bigger ones twice this week. He is getting into a pattern where he will go several days in a row of waking up super early, then napping during the day for a few hours (going on 3 at the moment I am typing this). For a kid that has not napped since he was 2, this is a rather new development. He has been on depakote since Feb, and it did not cause him to nap during the day like this. But, I guess it could be a mixture of everything really. When we first moved into the house, I chalked it up to being so busy and out of his element, so of course he is going to nap. But, he began doing this at our old apartment too this summer, and is still doing it. Not complaining about it. Lord knows he needs the sleep, as night time sleep is apparently broken up. But, that is it in a nutshell. Just thought I would update while I had the chance!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-31709626248813510262013-08-04T15:58:00.000-04:002013-08-04T15:58:17.507-04:00Puberty....The past couple of months we have noticed signs that Nick is starting puberty. It has been a challenge with his behaviors to say the least. If you thought puberty was rough with a typical child, with a kid that cannot tell you how he feels, it is even more of a challenge. <br />
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Not sure where we left off, but will recap what has happened this summer. Nick had his EEG in May, and that came out normal.He was having a good week that week-the week prior his neurologist had increased his depakote and we usually get a few good days after that. This time we had about two weeks worth of good days. After that, the jerks/twitches/stares started coming back. I sent in a video to the neurologist who then stated that he did see some seizure activity and his depakote was increased yet again. We were told to follow up with another specialist. So we set that appt. <br />
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We saw that doctor on July 22nd. The appointment was at 9:30am, which means we had to leave the house around 7am just to get there in time. Trying to get out the door with Nick at that hour is a feat in itself. I packed everything the night before. 17 pages of notes, 2 CD's of videos the school managed to get, my own videos, changes of clothes for Nick and extra diapers and wipes. Now I know that we did not even see the doctor-but her nurse practitioner. The nurse proceeded to tell me that everything is behavioral. Even jerking and twitching, even when he is happy one second/pissed off and smashing his head against the table or wall the next. Even when he falls asleep for 2-3hours after longer episodes...it is all behavioral. I was told a number of insulting things like "we need to be tougher on him", "I have no idea how you have stuck it out for 9 years", and "You might want to put him in a hospital for a couple of months so you can have a break". That was a gem! She blamed everything on autism and told me it was just going to get worse. Nice huh?? She looked at the videos for all of two seconds, and dismissed everything I had to say. Well guess what? It has been two weeks-we have raised our expectations of him-and we are still dealing with this. SURPRISE right??!! The next Monday I met with his BCBA and the RN that works with him in school. They also think that this is not all behavioral and that something else is going on. They told me to follow my gut and keep pressing to find out. Have not noticed any major jerks for about a week, but the other things are still there. The sudden aggression, the teeth grinding with head shakes, and the self injury. I don't know whether we are just going through a good period and he is not having jerks, or that they have really gone away. It is hard to tell. All I know is that he is still volatile, but at least he is not having head jerks in which he ends up biting his mouth all up. As far as medication, we cannot increase on anything right now. He is at the max dose for his weight. I do know that he is much worse in the mornings after going all night without his medication, and it takes a while after the first dose to see any reprieve. Until then, it is Jekyll and Hyde for hours. <br />
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It has not been all bad though! We finally closed on our house and should be getting the keys any day now. We are excited to finally be moving soon but also I hate the whole process of actually moving! If I could magically have everything done and set up I would. There is so much that we have to start doing next week. Getting boxes and packing things up, getting things straightened out with the school district, all I want to do is just crawl in a hole. <br />
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In other news, we have started receiving wrap-around services! We get 20 hours a week with a home support staff. They are here to help with behaviors at home, they take him on walks, and they come with me to help with him while I run errands. Yesterday we took him to the park, and then got lunch from Wendy's. We have gone to the grocery store, K-Mart, and on a trail walk. Taking Nick out in the community is hard work but necessary. We have had this service for just about two weeks now and Nick has taken to them really well. We also have 3 hours a week when a BCBA comes into the house and we discuss his behaviors. We have only seen this person once so far. so they are still trying to get to know our man Nick. We have the therapist here 6 days a week for a couple of hours each day. Next we are working on respite care. <br />
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We have a couple of appointments coming up, but they are just routine check ups with the dentist and pediatrician. Nothing out of the ordinary. We will see if the dentist says anything about Nick's teeth grinding. I am sure they will notice the effects it has had. I also plan on showing those videos to his pediatrician at our next visit and see if they can recommend another neurologist. All I want to know is what these things are. That's it.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com2tag:blogger.com,1999:blog-30135915.post-65428802221511611902013-06-15T21:48:00.000-04:002013-06-15T21:48:38.614-04:00Summer!A lot has happened since our last update, so I will try to go over it all. In April we found out that Michael needed glasses as the poor kid was having trouble seeing things from a distance. He ended up getting bi-focals! Bi-focals! For my teenager! I never would have thought that he would need those so soon. Basically they are just so that he would not be forced to take his glasses on and off all the time since he does not need them to do things like reading. So, around mid-April he started wearing them, and I must say, he does look good with them :)<br />
Around this time Nick continued to go downhill. He was having more jerky movements that no one seemed to be able to figure out what they were. I sent in a video of him one day to his school psychiatrist who had put him on depakote since his crash in January. He then told me that this was out of his realm of expertise and recommended we get a consult with a neurologist at the children's hospital 2 hours south of us. I called his pediatrician and she made the referral. We had our consultation on May 2nd. Great!<br />
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On the evening of May 1st we were preparing to celebrate Michael's 14th Birthday. He had a soccer game that night, so I had taken the night off of school and after his game we were going to have a little celebration. We had planned to take him to the store and let him pick out his birthday gift and then get something to eat. We had bought a cake earlier in the day and had saved that for after dinner that evening. Well, needless to say things did not go as planned. During the second half of his game, Michael fell on his arm trying to block a shot on goal (he was goalie) and broke it in two places. He spent his birthday evening in the emergency room getting a cast from his wrist to just below his shoulder. We did not make it home until close to midnight. The next day we had to leave the house around 8am to make our 10:30 am consult.<br />
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The neurologist listened to all of our concerns and we went over what Nick was doing. His twitching, his jerking, his teeth grinding, etc. He examined Nick and asked us if he was that "out of it" all the time. This neurologist also specializes in autism, so he is familiar with kids like Nick. We told him that this was Nick in one of his "good moods". He diagnosed him with 'spells' (via what he saw in the office, and what video we showed him) and ordered a 24hr EEG, MRI, and increased his depakote to 500mg daily.<br />
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The time came for the 24hr EEG and we once again had to drive over 2 hours away. I stayed overnight with Nick, and Mike stayed home with Michael because he was still in school. Nick had one big jerk prior to them putting on the leads, and nothing during the actual EEG. After they took the leads off, he had another one. Once again, nothing was caught on EEG, and we were discharged with orders to let them know if things changed. Two weeks later, things started changing. I sent in another video of Nick having a 2 min long staring spell where he was unresponsive. The next day I get a call from the Dr's office saying that he had reviewed my video and did see seizure activity. He ordered another increase in depakote. We are now up to 750mg daily on depakote, and I have sent in two more videos since then. One of Nick having some violent jerks, and the other one of his not-so-violent jerks. The neurologist has recommended we now follow up with an epileptologist as he could not identify what is going on. We have good days and bad days. I have started keeping track of all of his 'events'. Since the start of June, I have tracked 24 of these. They last anywhere from a few seconds (his quick twitches and jerks), to 3 minutes (staring, odd mouth movements, fumbling with clothes). He also has times where his head will drop and he will grind his teeth, we have also seen eye rolling. They are always preceeded by aggression, and after he has several big jerks in a row he will remain on thecouch for quite a while, and some times act as if he has a headache (banging his head on the wall) and we will give him some motrin/or advil. Most of them happen in the early to mid morning, and once again in the evening if he is getting tired. His school is also seeing the same things and have sent me some videos as well. I plan on taking all of the videos we have, plus all of our notes to our follow up with the epileptologist in July. We have the MRI scheduled for this coming Friday. The neurologist has diagnosed him with seizures based on what he has seen so far with the staring episodes, but we have no idea of what these other movements are.<br />
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Michael had his 8th grade graduation on June 6th, and Nick's last day was June 11th. ESY starts on July 1st and runs for one month. We found a house and should be closing on it later on this month, and will be moving in around August 1st. I completed my freshman year of college on the honor roll and have set up my fall courses. We are spending our summer afternoons walking in the park, going swimming at the YMCA, and we are also in the process of setting up home supports for Nick. It has been a busy few months to say the least. Not expecting things to slow down any time soon either!<br />
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We have had some good developments though! Nick has started basic pretend play!! He of course likes us to indulge him in such things as pretending the ottoman is an elevator and rocket ship, and he will lead us to it and say things like "Ottoman is an elevator" or "do you wanna do the elevator?" and we will pretend those things with him. It has just been fun to do that with him. No matter how basic it is, it is huge for him! He is also giving me kisses now. He will lean in to the side of my face and press his lips against my cheek (open mouth of course...LOL). So it is not all bad news here :) Hope everyone is having a good summer vacation and enjoying time with their families. I will try not to let it be so long in between updates from now on; but I can't promise anything ;)Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-5114980081593300162013-03-29T15:40:00.002-04:002013-03-29T15:40:19.680-04:00Long Overdue Update....It has been a long time since my last update and I apologize! The kids are on spring break right now and the first few days really threw Nick for a loop. The past two days have been rather good, so I am taking the chance to update.<br />
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Two weeks after Nick started with the depakote he came down with a horrendous stomach bug. He could not keep anything down, and was having constant diarrhea. I at first thought his blood levels on the depakote might be high-since those symptoms are the same as flu type symptoms...talk about confusing. Anyway, I called the nurse hotline and they said to take him in. I was really not keen on spending my weekend at the hospital, but if that is what we had to do, then fine. They took his blood and his levels were a little high, but only because he was so dehydrated. We were told to stop the depakote for a couple of days, and they gave him medicine to stop his constant vomiting. We ended up back in the hospital about 24 hours later because he had constant diarrhea. He was one very sick boy.<br />
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Being off the depakote allowed us to see if it was working or not. And boy, did we. 24 hours off it and his tics were coming back with full force. Poor kiddo was too sick to really do anything else, so that was all we had to go by.<br />
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Now, he has been doing better and getting better reports from school. His self injury behaviors have drastically decreased, as well as his aggression! Which has been wonderful! However, he is still having these jerky movements. And now they are starting to involve his whole body. There is a pattern to them. He gets Aggressive and has to be restrained (not hard-he can still move, we are just laying on the couch with me holding his hands). He screams bloody murder, stops suddenly, then jerks. Not just once, but multiple times. Afterwards, he is usually subdued and will remain on the couch for a while. I sent in some video to a couple of doctors who say they don't look like seizures, but they cannot say what they are. They know it is not normal, but can't say any more than that. So, at the recommendation of his school psychiatrist, we are seeing a neurologist from the children's hospital on May 2nd. This will be our fourth time going for an EEG and I am going to push for a longer EEG if it is not offered. I am tired of not knowing. I am tired of everyone seeing these and saying "You are right, something IS going on, we see it too" only to have nothing show up.<br />
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But, he is having a good day today. Lots of words and happiness. I am enjoying every second of it. I hope everyone has a wonderful holiday this weekend!!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-15496696551681004892013-02-15T08:45:00.000-05:002013-02-15T08:45:40.055-05:00The Crash...and DepakoteIt has not been an easy month here my blogger friends. On January 25th we were having a normal Friday afternoon. Nick came home from school as usual, and we all went to look at a house (because we are working on buying our own place!). Nick was just fine throughout this whole ordeal. About twenty or thirty minutes after we got home he simply crashed. He started having screaming, aggressive, and self injury fits. At first we think, Ok, we have been through this before, he just needs to calm down. He never calmed down. Three hours of screaming and hitting himself later we were taking him to the hospital.<br />
Something must be wrong. But nothing was found. <br />
We saw the psychologist there, and we thought this might be a reaction to his increase in risperdal a couple of weeks before. We thought it just might have taken that long to build up to an untolerable amount. Advice from the psych there was to decrease his amount slightly over the weekend, and talk with his regular psychiatrist on Monday. Ok. By this time, his melatonin had kicked in-as well as his evening dose of risperdal, and he was getting sleepy. Other possibilities were discussed, such as admitting him, but we are not 'going there' yet.<br />
We were hopeful that this was just one of those One time events and that we would decrease his meds and everything would go back to normal. Well, here we are a full month later, and we are still not back to normal. That weekend he went through these episodes every 15-20 minutes. It got to the point where I was recording them on video because they seemed to develop a pattern. We got through the weekend (barely!) and first thing on Monday I was calling his specialists at school. By the end of the day, we had a prescription for Ativan. Nick was in no shape to go to school that day, so we took him out with us to pick up his new medicine, and eagerly gave him the first dose. While it did not stop these episodes, it did decrease their intensity to a more tolerable level. Lots of communication between all of his specialists in school and me went on during this week. I kept them in the loop of his episodes at home, and they did the same for me during school. Meetings were held to discuss his behaviors. Everyone noticed the drastic change in him. He went from having few aggressions and self injury through the day to having over 40 of them.<br />
Just to get him ready for school takes two of us. He was no longer eating at the dining room table-but was being fed on the couch, we could not let our guard down. He started spiraling out of control. We were even to the point of having to take shifts since Nick would wake up in the middle of the night screaming as well.<br />
His risperdal was once again increased to the normally maximum therapeutic dose of 3mg 10 days later, and we were still on the Ativan. We were told to try that for one week to see if it helps. We were also instructed to start sending some Ativan to school so he can have a dose at lunch time. This was due to the fact that once his morning dose wore off, he went out of control again. Emotionally, physically, and behaviorally he was a complete wreck. He has/had scratches up and down his legs from his toenails digging into them, bumps and bruises on his forehead from the head banging, and he was biting the inside of his mouth all up. He looked a hot mess.<br />
But so did we.<br />
This has taken a mental toll on us as well.<br />
We don't sleep very well. We get short with one another. We are stressed beyond belief. Three weeks of a behavioral crisis have aged us about 5 years. I spent my birthday restraining my son from hurting himself as well as others. Not to mention all the other days since then we have had to restrain him. After not seeing any change in him with the risperdal increase, and honestly, I am not even sure the Ativan is doing much anymore, we were given a prescription of Depakote. He has been on that since Wednesday. Things have gotten slightly better. For instance, he is sleeping at night! (so far!) He is still having some episodes throughout the day, but not as many. But, this is only day 2. I am not getting my hopes up yet.<br />
Right now his med sheet is:<br />
1.5mg risperdal in the a.m. when he gets up<br />
.25mg ativan at the same time.<br />
.25mg ativan at noon.<br />
1.5mg risperdal before dinner<br />
250mg depakote before bed.<br />
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And we still do not know exactly what these episodes are. Last Saturday when his psychologist made a visit, he saw one from start to finish. It started with aggressions and screaming. Then, Nick was zoned out for about 20 minutes. No response from him at all. His eyes were glazed over, and he was just staring.During this time he had a lot of facial tics. Last night, he had one that started in the bath. Screaming and aggression. I restrained him on his bed. He was alternating from screaming bloody murder to complete calmness. Then, his whole body jerked. This happened a couple of times and always in this pattern. He has had three EEG's that have shown nothing, but we are still dealing with these things. <br />
But, that is where we are now. I can only hope that things start improving. We shall see.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com4tag:blogger.com,1999:blog-30135915.post-71502714724328088622013-01-12T21:15:00.001-05:002013-01-12T21:15:17.165-05:00Holidays and more.....This semester of school started out quite a bit rocky. Nick ended up getting sick during like my second week of classes, causing me to miss a day because he had to stay home. Then, the very next week I was late to a class because as I was getting ready to walk out the door, the phone rang and it was the neurologist. They were calling to get some information from me regarding Nicks 'episode' at school on the 5th of December.<br />
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On the 5th of December, I was all set doing my homework and then the phone rang. It was the school nurse stating that she had seen what looked like seizure activity in Nick. He started having a meltdown, and it escalated from there. He had to be taken out of his classroom and restrained by three people in a chair. One of them was his aide, one of them was the school nurse, and one of them I think was his OT. They had another person capture it on video, and it was pretty disturbing. Once he was in a meltdown, his self injury started taking place and he bit up the inside of his mouth so much that blood was dripping out of it. He was screaming, shaking, and biting. It was horrible to watch, as they gave me the video. We were seeing the same things at home, and finally, now someone was seeing them at school. His next team meeting was shortly after that, and another neuro consult was put in.<br />
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Literally the following week Nick caught the damn flu, once again, on my school day, and Mike had to work that day. So, once again, I missed another class. Well, of course Nick was kind enough to share his flu bug with the rest of us, and we proceeded to drop like flies. It went through three of us....I am still not sure how Michael managed to escape the puke fest, but he got lucky. It was awful! I have never felt like such crapola in my life. Of course, now I ended up missing another class because I was sick. REALLY?? So, on the 21st of December, we went to the neurologist for another EEG done on Nick. This one was sleep deprived. So, we had to keep Nick up most of the night Thursday night-he was only allowed four hours of sleep. I don't think the kid ever wanted to sleep so badly in his life. At 8 am we were on our way to the neuro. He actually let them hook all the leads up and we got through the entire 45 min test with no meltdowns!! He did have a couple of his little episodes, but no seizure activity....of course. We get back to the house around 10am, and get some glorious sleep in. We needed it. Why? Because we also had a hockey game to go to that night in Jamestown-in the middle of a snow storm. This is what the road looked like on our way back.....<br />
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What is normally about a 45 minute drive took us 2 hours. Saw a few cars in the ditch, glad we were not one of them! Anyway, Christmas was good. The boys got a lot of good stuff. Nick's favorite toy is a toy microwave :) He must have played with that thing for three straight days. I believe he even slept with it a couple times. Now, it sits atop his dresser awaiting for the next obsessive moments! We had a decent break, although we all got one hell of a cold. Nick is still dealing with it. It is always awful when he gets a cold....it takes him forever to get over it, and then it has usually morphed into some sort of sinus condition....like it did this time. The last couple of months we were also dealing with some major self injury/aggression issues with Nick. His psychologist increased his dose of risperidal to 2.5mg a day. We are on the first week of the increase and so far, so good. I have e-mailed his teacher to make sure they are aware of any possible side effects from it. So far, his tics seem to have diminished, and no aggressive or self injurious behaviors for the past few days. I have caught up on my school work from both being absent, and the holiday break. Just have a few more weeks to go in this semester and then it is on to the next.<br />
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Temperatures today were unreal! It was 61 degrees here today! I think Nick was happy to see the snow and ice had melted! He wanted to spend the day outside. So when I got home from my class today, I took him for a trip to Wal-mart :) He was soooo good during our trip, I got him a toy. He had the biggest smile on his face. That is what makes it all worth it. When he is happy, it is like the best thing in the world for me. I love to see him smile! :) Monday we go back to winter reality with temperatures in the 30's and more snow by the end of the week. So, we are enjoying this little taste of spring for the next 24 hours. Here are some pictures taken over the holidays.<br />
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<tr><td class="tr-caption" style="text-align: center;">Nick in his hoodie from his Nana!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Both my boys playing with their Christmas presents!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjloNq06-PantiAHnTJTLNbP-pgPZN4OcU8nJSMqNs_5JecPXguUhfBHSswFgl0q5kX01lfH3mZURbFJYocOgQbFXpz9bnAffas9C_5DIRbE8ns02D7EivtkXBv9sixr1KLPEAV/s1600/winter+2012+012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjloNq06-PantiAHnTJTLNbP-pgPZN4OcU8nJSMqNs_5JecPXguUhfBHSswFgl0q5kX01lfH3mZURbFJYocOgQbFXpz9bnAffas9C_5DIRbE8ns02D7EivtkXBv9sixr1KLPEAV/s320/winter+2012+012.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stuffing his face with cake..LOL</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGn_E2j1C7RUG_b-JcnfE2RA10RuvCQ0tUK-ZkCeoBeJQoqkzlatpdOYmliMfmIoDpSdBaln3gCL8f-wRQTojH9TMLX6TelGE_bFK4_4Fn657GZa-KFuoHDSW_30n8xf3H3BnB/s1600/winter+2012+042.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGn_E2j1C7RUG_b-JcnfE2RA10RuvCQ0tUK-ZkCeoBeJQoqkzlatpdOYmliMfmIoDpSdBaln3gCL8f-wRQTojH9TMLX6TelGE_bFK4_4Fn657GZa-KFuoHDSW_30n8xf3H3BnB/s320/winter+2012+042.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And making a marvelous mess! :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN_S4XNDCAr7UF0Ns_qWIZD21o0oJztEVXUQh1LtZvjxHI0s-I0SeAxO6u_J9sFvyP-cWuyAtkTQ5bS4NldEjFrToalaeaUDzA1FIXy-jZjOuMt3hItKEVyU5kgoswlyE5qvYu/s1600/winter+2012+004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN_S4XNDCAr7UF0Ns_qWIZD21o0oJztEVXUQh1LtZvjxHI0s-I0SeAxO6u_J9sFvyP-cWuyAtkTQ5bS4NldEjFrToalaeaUDzA1FIXy-jZjOuMt3hItKEVyU5kgoswlyE5qvYu/s320/winter+2012+004.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A short walk in the snow. Literally. As in it took longer to get him dressed for this.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgoiiZSLHElDQI9gOm7OROwx95kxjVebXQuyA1pjoz4uF-DgP4EVC1X6oGVAoDJgCKt0j3FfdIfgNKz3K1nCIqBdArrnU7j4x-0RPerVgFH4onIuwTka4mBZYJB37dr-PRU8sU/s1600/winter+2012+008.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgoiiZSLHElDQI9gOm7OROwx95kxjVebXQuyA1pjoz4uF-DgP4EVC1X6oGVAoDJgCKt0j3FfdIfgNKz3K1nCIqBdArrnU7j4x-0RPerVgFH4onIuwTka4mBZYJB37dr-PRU8sU/s320/winter+2012+008.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The babysitter! He loves watching the rotisserie spin!</td></tr>
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<br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-36675458534330819942012-11-14T17:48:00.000-05:002012-11-14T17:48:23.466-05:00End of a semester.....I apologize for my lack of blogging lately! I had thought of doing an update several times, but it seemed that something else always got in the way. By the time I was done with whatever it was, all I wanted to do was relax and go to bed :). Today was my last final exam for the semester and I am ready for a bit of a break. I think I have all B's in my classes but I won't know for a couple more days yet. It has been crazy around here I tell ya! So let's see, what have we done since the last update?<br />
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We had hurricane Sandy make her way to us. We are in NW PA, so we did not get as much of a hit as the coast did, but we still had a lot of wind and rain from it. The kids were only out of school for one day-that alone was enough to drive anyone crazy. Nick was all out of sorts :( It looked like Halloween would get rained out, but we were able to get up and down the street once before it got really bad. I only took Nick out this year, Michael said he did not want to go, or even hand out candy-which was fine, because money was tight anyway. Nick managed to say "Trick or Treat" and "Thank you" after some prompting and he seemed to have a good time. We filled up his little bucket he got from one of his happy meals at McD's, and then went home. He was dressed in a Robinhood costume :)<br />
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When we got home, I actually let him devour most of his candy. We don't keep candy around these parts and it was even easier to do without it since Nick never asks for candy anyway. But, with a little (Ok, A LOT) of prompting, and maybe even a little bribery with applesauce, he enjoyed chocolate after he got the first taste of it. He was very leery of the M&M's, but after a couple of those he seemed to like them as well. Not as much as the mini Hershey bars (Which I had to break into even smaller bits for him), but he ate them.<br />
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We had to get new tires for the Jeep. We were going to wait a while longer until we had the cash, but the whole Sandy thing possibly being a snow event for us (it wasn't), made us think we should go ahead and get winter tires. I am glad we did, because it seemed right after Sandy we started getting the first snowflakes falling, as well as more rain. Our tires were nearly bald and traction on them was not so good, even for normal driving. We noticed the difference immediately and actually spent the first time driving on them remarking on how the Jeep definitely stopped better :) and you felt like you were actually still on the road! Simple things like that amuse us.<br />
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The boys have been doing well in school. Michael has told me that he is on the honor roll. I have not seen his report card yet, but he informed me the other day they had an ice cream social for all the kids on the honor roll, and he was one of them! Nick is doing, well, okay it seems. The school called us last week saying that they would like to increase his meds because they are seeing more self injury and aggression. I have a meeting with them on the 28th to discuss things further. I know on his daily reports there is usually not a day that goes by where he has not been aggressive at some point. Today, he apparently had more than one instance of aggression and self injury. :( It is just one thing I hate about his autism. Nick has also been sick for about a week or so now. All the boys in my house are. Michael was sent home Monday with a fever and aches. He stayed home yesterday, and went back to school today. I knew he was really sick when he came home on Monday and literally slept all afternoon and all evening. :( He is not one to do that at all. Nick has just had some sinus crap going on for the most part. He was miserable all weekend, and finally seems to be on the mend. I went out and bought a nose syringe (one that is used on infants) because Nick has not yet learned how to blow his nose on tissue. He will blow it anytime without tissue and wipe off whatever comes out onto his face, or any furniture nearby. ugh. His hangar obsession continues with full force. On top of all that, I am not sure if I mentioned the fact that my husband injured his back at work way back in June, but we are still dealing with it! He was released from therapy because they could not do anything more for him. He can only work 15 hours per week, cannot lift anything over 15lbs, and has had quite a few set backs in his recovery. Just when he starts to feel better, he starts having severe muscle spasms that have sent him to his knees. He has had several shots in his back, and they work for a few days it seems, but then stop. He is hoping that his back will eventually recover fully, but I am starting to have doubts that it ever will. Of course this has placed much of the child care/and house chores onto me. He helps when he can, but often it falls to me. Michael is a big help and pitches in quite a bit sometimes with caring for Nick while I run an errand or am busy with homework. Homework of course I try to do as much as possible when the kids are at school or in bed. But it does not always work that way when I have had to study for finals over the weekend. Stress has gotten the better of me at some points, and I am not too happy about that. I can control it most of the time, but on days like when Nick decides to rip up our carpet on the stairs (staples and all!), gets poop everywhere, pees through several outfits a day, and has numerous metldowns all in one day (sometimes even all in one hour!) things start to just unravel and my sanity starts going out the window. Some days I wonder why I decided to go back to school as it seems that has done nothing but ADD to my stress level, but then I have to think of the big picture and just press on. This IS what I want to do!<br />
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And after months of putting it off due to tight finances, hubby and I finally sprung for an elliptical machine!! I am so excited! I have worked out on these things for YEARS in a gym, and now I will have one of my very own! And since it is hard for me to actually GET to a gym with everything going on, I can take an hour out of my own time and workout at home. I am able to think clearer when I exercise, and literally just slow my mind down and think about things more in depth instead of just frantically racing around. I need to lose some weight so I can keep up with Nick if nothing else. Who has time for a gym when you are going to school, caring for your family, and chasing an autistic 8yr old?? By the time I am done with everything I just want to fall in bed and go to sleep!<br />
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That is pretty much all that has gone on in the last month. Just trying to keep my sanity intact daily. I hope everyone has a wonderful Thanksgiving!<br />
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<tr><td class="tr-caption" style="text-align: center;">First signs of winter!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nick loves his new Angry Birds winter jammies :)</td></tr>
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<br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-67356843968931166392012-10-14T18:58:00.000-04:002012-10-14T18:58:04.872-04:00Fall is Here!! Where do I begin with an update? This semester is quickly coming to an end for me, and I now have to think about what classes to take next term. So far I believe I have an A, and two B's in my classes :) My Research and Writing class has been by far the most challenging-mostly due to the instructor and lack of communication. I think I want to keep my Mon-Wed-Fri schedule, as that seems to work really well for me.<br />
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Nick has been Nick. We were in a fairly stable period behavior wise, and then he caught a little bit of something earlier this week that brought on aggression and Self Injury. Began giving him some cold medicine and nose sprays, and it seemed to go away without getting too serious, and by Thursday he was back to normal. We all had a wonderful day yesterday! Michael had his first hockey game of the season, so we spent the afternoon at the rink, and Nick made it all the way through with no meltdowns! We then went and got an early dinner from KFC-which everyone enjoyed. It was an all around good autism day :) One thing we have now noticed is that Nick still has sleep problems on the weekends. Usually on Saturday nights/early Sunday morning he will wake up sometimes around 3-4am and I am constantly having to tell him to go back to bed. He did this today, and as a result, he is fairly tired by the afternoon-early evening. He starts spending more time up in his room laying on his bed. He simply cannot take a nap though. Not that I would not like him to, I would, but his brain does not let him just 'relax'. He starts asking for "time for night night" on these days around 4-5pm. Today, he has been clearly tired and edgy this afternoon, but we have managed to hold it together behavior wise. If we can make it through dinner, we are in the home stretch.<br />
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Fall is here, and we have been enjoying the cooler temperatures! The trees are getting richer in color by the day, and before it was all said and done, last week Nick and I took advantage of a crisp fall day to admire the fall colors!<br />
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Nick has started to do something that we have thought is rather funny. He will go into Michael's part of the dresser and put on his clothes! He knows these are not his clothes, and it is just so funny to see him come downstairs in baggy pants and shirts! If we try to change him into his clothes, he puts up a protest! Nick has noticed that when Michael gets home from school-he changes out of his school clothes. So, now, Nick wants to do the same thing. When Nick gets home he wants to be put in pajamas or other clothes. It is hilarious actually. He wants to be like his big brother, and is doing things that maybe a toddler might do :)<br />
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Michael had another growth check up last Monday. It was not something I was looking forward to since both the boys were out of school, and Mike had to work. So, I was nervous about having to take Nick to an appointment that was A) not fun, and B) not even for him. Thank the Lord Nick was in a good mood, and we had no problems! The Dr measured Michael and he is 4'8" tall and 99lbs. He was not satisfied with this amount of growth, so he prescribed an oral medication and increased his growth hormone injection to 2.7mg from 2.2mg. We have been on the oral pill for one week, and so far no side effects...which I am happy about. We shall see what this does for him at our next check in Jan.<br />
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Michael also tested for his orange belt in Hapkido! He was also one of the select few from his eighth grade class to sail on the Brig Niagara for one afternoon during school! Have no idea what our plans are for Halloween yet, but hopefully it will not be ruined by meltdowns. Despite some bumps in the road, we have been on a rather good streak and would like to continue this way. Hope everyone has a good rest of the weekend and a great week! Happy Fall!! :)<br />
<br />Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-1197572501967724652012-09-20T09:13:00.001-04:002012-09-20T09:13:48.119-04:00It Hits Like a Ton of Bricks.....Things had been going along really well for the last two weeks or so. We were settling into our new normal routine. I was finding the right balance with my school work, and house work; and so were the kids. Things were going in the right direction. Then Monday came, and WHAMMO! We were thrust back into the horrible world of self injury and aggression. Nick came home from school with two huge bruises on his thighs. I looked in his backpack for the daily report to see what had happened. No Report. Damn! His aide must have been out. He was fine the rest of the afternoon, so I had hopes that Tuesday would go better. Tuesday morning he was in a great mood. In fact, he has been in a great mood nearly every morning since school started. That gives me such peace. That no matter how his day seems to go, he is always happy to GO to school--that was not the case at his previous school. He came home Tuesday and the bruises on his legs were worse than they were the day prior. What the Hell??!! And again, no note to say what happened. That evening something made Nick very mad and he attacked me. Days like this hit like a ton of bricks when we have had so many good days in a row. It is like a swift punch in the gut when you least expect it. A reminder, that once again, Autism is in charge and we merely try to control the damage.<br />
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So yesterday after school, I sent an e-mail to Nicks behavioral specialist at the school. We need help. He is getting too big and too strong for me to control when he gets like this. I am just trying to defend myself against his smacks, kicks, head butts, etc. I restrain him, but that just seems to anger him more, and then he starts biting himself because he cannot do anything else. So, he is screaming, kicking, and now bleeding, while I am trying to hold him in an attempt to prevent him from smacking his head-either with his hands, or smacking it into the bed frame, and wondering why the F*ck my child has to go through this?! Anyway, the e-mail has been making the rounds through his behavioral specialist, mental health specialist, psychologist, and his teacher. We might need to look at different medications, I asked them if they could maybe show me how they handle his aggressions so we could do the same at home, we just need help. He had 68 incidences of Self injury on Monday. <b>68!!!!</b> I can't stand to see him like this. Why does he hurt himself??!! And these are not pain related. It may sound absurd, but just like a baby has different cries, Nick has different meltdowns. There is a difference between them. Yesterday was a good day. He had zero incidences of self injury, and no meltdowns....either at school or home. I was relieved to hear that he had a good day, but I still want to see if we can get this under control before he does something in a rage that ends up being a serious injury. (and just for reference, he has ripped drawers off a dresser and thrown them in one of his rages). There will be a team meeting next week to discuss what can be done. I will let you all know what comes of the meeting.<br />
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In other news, we are now getting Nick's diapers covered by Medicaid! That will save us some cash. We finally resigned ourselves to using this service since potty training still seems too far away. We will never give up trying, but until then, he will get free diapers. We have bigger issues to concentrate on now; but still practice with making him sit on the potty. Small steps....Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com2tag:blogger.com,1999:blog-30135915.post-55147246775717777932012-09-06T14:58:00.000-04:002012-09-06T14:58:26.931-04:00Spending my Time....The first week of school has come and gone. Nick had a bit of a rough afternoon the first day on the bus, and after doing some brainstorming between myself, the bus driver, and the aide on the bus, we decided that the straps on his car seat might have been too tight. The second day they were loosened, and he has been happy ever since.<br />
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And as for how I am spending MY time while they are at school? I am back in school myself! I am pursuing my degree in early childhood ed. and am enrolled as a full time student. I am taking three classes Mon-Wed-Fri-Sat. Between homework, school, housework, kids, sports, and errands, there is not much time left. But I am enjoying it.<br />
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Michael is doing well in school so far. He comes home everyday and does his homework without being nagged. That's a huge step for him! Not much to post really. Life is good. We are back on a structured schedule, and Nick is thriving. Can't get much better than this.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-70928058932785479962012-08-27T08:34:00.000-04:002012-08-27T08:34:23.303-04:00Back to School!!<div class="separator" style="clear: both; text-align: center;">
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Nick was all smiles this morning as I told him he was going to ride the bus to school today. Looking forward to another whole year of progress! I have so much more high hopes going into this school year than the last one. He has changed so much for the better since going to his current school. True, he did regress a tad over the three week break from his summer school, but he should be able to pick all that back up fairly quickly. This year, we have everything in place. This year, he will get to use the swimming pool at school for physical therapy-which I know he will LOVE. This year I have also signed him up for the Special Olympics. It is going to be a good year, I can feel it!<br />
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Now that I have both the boys off to school, I am now faced with what to do with my time?! Any suggestions?Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com2tag:blogger.com,1999:blog-30135915.post-21739131978939304562012-08-23T21:44:00.002-04:002012-08-23T21:44:52.646-04:00Ok, So Today was not my proudest mommy day...I thought I had the school orientation schedule all figured out today. In my mind, since both of them were on the same day and just hours from each other, it somehow got in my brain that Nick's was from 1-3pm, and Michael's was from 3-6pm. We were all prepared to leave the house around 1:30 and go to Nick's school. And when I say 'ready', I mean we were just about to walk out the door. In fact, Nick was already standing at the door. I looked again at the paper we got in the mail. "Teacher Meet and Greet from 3-6pm". WHAT?! How the eff did I mess that one up??!!Great! Not leaving when Nick was all ready to go and expecting to leave is not a good thing. Anxiety creeps up because we are suddenly not going somewhere. I had to think of a 'filler'. Somewhere to go with Nick while we waited. Autism parents will know this task very well. I came up with one that I knew would work well. Going to get some lunch from McD's. Nick LOVES Chicken Nuggets and French Fries. Hubby, sensing my frantic desperation to fill in some time due to my own mistake, did not even object. I said "Fuck it, let's go to McD's!" Now, I can recite Romeo and Juliet, or even Moby Dick, and Nick will not utter a single word. But the second I say a cuss word, he picks right up on it and says it. So, Nick said "fuck it". Not my proudest mommy moment, but at least he was using words appropriately right??! This is sadly, not the first time Nicky boy has dropped the F bomb. The day was saved by a few chicken nuggets. Hey, a mom's gotta do what a mom's gotta do. We have since printed out a calendar and hung it up where a certain eight year old cannot reach it and rip it to shreds. I gotta give myself a little credit though....I have managed to keep everything straight for about 4-5 months now! One slip up is not too shabby!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com2tag:blogger.com,1999:blog-30135915.post-78173356070494584332012-08-16T21:02:00.002-04:002012-08-16T21:03:55.546-04:00Summer is Winding Down......<div class="separator" style="clear: both; text-align: center;">
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Summer vacation is winding down for both the kiddos. We are in preparation mode for the next school year. Packets of paperwork are filing in from both of their schools. Tomorrow we will be out school shopping, much to Michael's dismay. We need to get proper school attire for Michael as his school has a dress code. I need to call one of the team members that works with Nick tomorrow to provide them with some insurance information. We have school orientation for both of them on the 23rd. Nick will have the same teacher as last year, but Michael will have all new ones.<br />
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We have been trying to enjoy the last few days of summer vacation; however autism does not take a vacation. Nick has good days that are really good, and bad days that are really bad. Sleep is sometimes hard to come by. He is sometimes up at 4am, and sometimes he sleeps until 8am...you never know exactly which day will be what. But, yesterday was a good day. So, we went on a little walkabout at a local park. Which he and I both enjoyed.<br />
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Today, we had an appointment this morning with a dermatologist. The first thing she noticed about him was his big blue eyes and long eyelashes. Nick was being quite cooperative and charming (as in he did not destroy her office or break any picture frames!) I think we got the hang of this, him and I. I may look like one of those "helicopter parents" from a distance, but unless you want your things destroyed, I do what I gotta do. We walked out of there with three more prescriptions. A special shampoo to use everyday (to get rid of what I can affectionately call "reptile skin" on his head), a spray to use in conjunction with the shampoo, and then a cream to use on his elbows. After that, we had to go to the grocery store to get a few things. Nick is getting better about handling these outings. He will even push the cart and help put items in. It makes me happy to think that he is developing some coping skills needed to do these things.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUQF2TlTndRXUBbIy259DagLnTX_PkvkMQhsNHjjYcjM4-dfuXfSeT2vz4XE6O1xIu1DzD7sxcAFvn9V4PUhOaMeTYl2SRvbsQp1j_4zVGbG1b0oPL5Xnp8bH1mxZJ2vSt8UBw/s1600/summer2012+034.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUQF2TlTndRXUBbIy259DagLnTX_PkvkMQhsNHjjYcjM4-dfuXfSeT2vz4XE6O1xIu1DzD7sxcAFvn9V4PUhOaMeTYl2SRvbsQp1j_4zVGbG1b0oPL5Xnp8bH1mxZJ2vSt8UBw/s320/summer2012+034.jpg" width="240" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhxprIhRVMGI6Q1ec0JCd44wPt_63AgKE7jlhkeK0Egwok2wnvKRozTdIxknAq0EIx0Ux0INdrGL0iOSiWhSeEdjyajhF4SHJxGJTrvelD05r-nijzv5P3DlnWLsA5pDYPbmy2/s1600/summer2012+032.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhxprIhRVMGI6Q1ec0JCd44wPt_63AgKE7jlhkeK0Egwok2wnvKRozTdIxknAq0EIx0Ux0INdrGL0iOSiWhSeEdjyajhF4SHJxGJTrvelD05r-nijzv5P3DlnWLsA5pDYPbmy2/s320/summer2012+032.jpg" width="320" /></a>I imagine that the picture on the left kind of sums up what our world can look like to him at times. He is in focus, but the rest of his surroundings are nothing but a blur. With him feeling the chaos and out of control. Then other times, it is peaceful and serene, like the picture on the right.<br />
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And when we get the balance just right, we have moments like the one above. We had all of those on one walk in the woods. Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-84764163102305810702012-07-28T18:06:00.000-04:002012-07-28T18:06:24.356-04:00Dairy Free....We saw an ENT/Allergist on Thursday with Nick. The kid has some issues that we would like to get to the bottom of. For one, his seemingly non-stop craving for milk and yogurt. Milk was the only drink he ever asked for; even though he clearly knew the words/PECS for juice. I was buying 3-4 gallons of milk every week, most of that going to Nick. He could also do the same with yogurt. He would eat an entire 6 pack in one sitting. I have even caught him sneaking into the fridge to get yogurt at times. Two, he has started to have some sinus and congestion problems. We also began to suspect that he was having headaches and stomach aches. The doc took us in, looked in his ears, nose, and throat, and said everything checked out there. We talked more about his meltdowns, possible headaches, stomach aches, sinus problems etc. He is willing to do some allergy testing on Nick (blood tests) after we try removing dairy from his diet first. If we see no change in him in two weeks, he told us to call and they will get him tested.<br />
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So, we have been without dairy now for three days. It's hard to say whether it has helped, since it has only been three days, but I do believe he is going through some withdrawals. Thursday evening was simply awful. He had numerous meltdowns and his legs even started shaking. Mike was wanting to quit right then and there and give him some yogurt, but I said no. He had applesauce instead. Friday was better. I informed his school that he was not to have dairy, and sent in some juice and snacks for him. Instead of getting morning yogurt with his medicine, I gave him oatmeal. He went to school and had a decent day. A couple of meltdowns with aggression, but overall it was decent. Today, has been somewhat decent. He had a major meltdown around 10am that lasted for 15-20 min. Complete with self injury, aggression, and screaming. Then around 4pm he had some dry heaves before he vomited up some of his hot dogs he had for lunch. I think it might be the orange juice. It might be too acidic for him, so I guess I am just going to have to watch out for that. His strep throat has cleared up, and he does not sound very congested anymore so that is good. We have a couple more days left of the amoxicillin and then I can quit that. We hope that he stays well for a nice period of time! We could all use a break from seeing so much of the doctor and pharmacist!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com2tag:blogger.com,1999:blog-30135915.post-41031950190958032852012-07-21T15:03:00.000-04:002012-07-21T15:03:43.324-04:00STREP!!!This week Nick started to have more meltdowns than he has had in a long time. They started getting fairly severe with lots of aggression and self injury. We have learned that these type of meltdowns are only caused by pain. We started with the flonase for three days. Then, after my meeting with his team at school I bought saline spray and zyrtec. We also had Claritin at home. I started with the nose sprays and Claritin, as well as Advil for pain. He was waking up every morning in a meltdown. I started taking notes of everything he did, ate, how long his meltdowns were, and what he did during them. Thursday at school he had 25 aggressions towards staff, and <b>FORTY </b>times he engaged in SIB.<br />
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<tr><td class="tr-caption" style="text-align: center;">The bruise he gave himself from smacking his leg with his hands.</td></tr>
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By Friday, we had three appointments set up. I spent most of Friday morning on the phone with various people. I called his pediatrician first thing Friday morning and described what had been going on. We were able to get an appointment Friday afternoon! Of course, with Nick, that is a fiasco in and of itself. We had to be there at 3:15pm. We did not get seen until 3:30pm. It takes two of us to even go to the appointment with him. One to sign him in, and the other to stand guard over Nick. He still managed to get away from dad and nearly knock down one of the pictures in the waiting room. Then as hubby was putting up that picture, Nick ran off and was knocking down a heavier picture. I managed to save it, but as I was doing that, he started running down the hall. After nearly destroying the waiting room in one fell swoop, we had to wait to be seen. With Nick, waiting for long periods is not easy. Mike went up and talked to the receptionist about waiting in one of the exam rooms, which proved to be far better for ALL involved. To make a long story short, the doctor was able to do a throat culture (although it took FOUR of us to hold him down) and it came up positive for strep throat. UGH. Nick is once again put on Amoxicillin for ten days. Things today have not been much better. He has meltdowns at least every two-three hours as the Advil has worn off, even though it says "up to 8 hours". He is still congested in his sinuses, although they are not infected. During those meltdowns he has to be restrained because 1) he will come after me and smack me repeatedly and 2) he will injure himself by banging his head on anything around (walls and his bed are popular). He has already given himself a big bruise on his forehead the other night. I certainly hope things are much better tomorrow.<br />
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Thursday we got to see an ENT and get Nick tested for allergies. Hopefully, that will provide us with more clues.Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-54306752415348367052012-07-14T18:02:00.000-04:002012-07-14T18:02:19.517-04:00Happiness....<div class="separator" style="clear: both; text-align: center;">
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One word says it all for this post...............................................Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0tag:blogger.com,1999:blog-30135915.post-86554304320599498332012-07-05T09:00:00.000-04:002012-07-05T09:00:40.635-04:004th Of July<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSxPEGmqeT40mmL_1RGopY4RWlnV3JXLZQlEZyP7yiUZx-N6pDNYwXd93S5pbOs3EUEcJayGQp8T1-b5UAtbwwn4KurMxhOgNNCtlWSLcsHqb_CtCTsO9NyAeVzI6Ak93TeELR/s1600/summer2012+046.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSxPEGmqeT40mmL_1RGopY4RWlnV3JXLZQlEZyP7yiUZx-N6pDNYwXd93S5pbOs3EUEcJayGQp8T1-b5UAtbwwn4KurMxhOgNNCtlWSLcsHqb_CtCTsO9NyAeVzI6Ak93TeELR/s320/summer2012+046.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Firework Fun!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA1PTru-L7SqlAcaViHkV-NQjI28TbLuY4vzCkxP29pm-BXuI8CEABj2jCMSv_ta62yhiFuyVRNohfGYK2Rk2eB5sc6bodJsU_3OoZ4uG4SLMaIEPnuCOL5KCt2TbLiejeBnck/s1600/summer2012+032.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA1PTru-L7SqlAcaViHkV-NQjI28TbLuY4vzCkxP29pm-BXuI8CEABj2jCMSv_ta62yhiFuyVRNohfGYK2Rk2eB5sc6bodJsU_3OoZ4uG4SLMaIEPnuCOL5KCt2TbLiejeBnck/s320/summer2012+032.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-j5wEgmvnL86EI6Vtg409m5CMCXB2KgGlIp9s43_WcsZBRK5qkmRf5tLhFmvDyoFsdrm4hVv5wxlezfFiL5MBEkdUFHzKo_34sQJnyNCTAaPG-oTZrSX-OwzwsHPRJjf7BME5/s1600/summer2012+028.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-j5wEgmvnL86EI6Vtg409m5CMCXB2KgGlIp9s43_WcsZBRK5qkmRf5tLhFmvDyoFsdrm4hVv5wxlezfFiL5MBEkdUFHzKo_34sQJnyNCTAaPG-oTZrSX-OwzwsHPRJjf7BME5/s320/summer2012+028.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nosey as to what is going on outside!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipbGACYAczhiZ2H7r5BncQRo7RgIG9Bx8oHpfnjI5EdfmMDqpQQSnwbPTFUWoOtu6qExMl44He7g2dXv3PGN5k8DvmrI4x4vyi7Tw9erfDuyeEkaadpxjpfL0FKnKlAlUT9pYP/s1600/summer2012+036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipbGACYAczhiZ2H7r5BncQRo7RgIG9Bx8oHpfnjI5EdfmMDqpQQSnwbPTFUWoOtu6qExMl44He7g2dXv3PGN5k8DvmrI4x4vyi7Tw9erfDuyeEkaadpxjpfL0FKnKlAlUT9pYP/s320/summer2012+036.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVxmjdC9zQClWQonoCNeQ8CsYX5NGEThal-OZicg8Bt5NkaRFOUZnxS0mIWpnXnQBDkOMRGuyGystuRmoG29NfYcbgozf1cUgQxWe48i-DFIja603AK24rwjs0X4rHK0s7-mA/s1600/summer2012+046.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgVxmjdC9zQClWQonoCNeQ8CsYX5NGEThal-OZicg8Bt5NkaRFOUZnxS0mIWpnXnQBDkOMRGuyGystuRmoG29NfYcbgozf1cUgQxWe48i-DFIja603AK24rwjs0X4rHK0s7-mA/s320/summer2012+046.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXnJXiyKaxSf3_07k4TgJkE0yhV_kywV7y9oXjfs9sCjHhp_5hJr5EjeR2iP3Ka-15tN3LFIZYmop8ErGP4R42INmW3T78R7lgq2Mk3mTd2Wi9D69O1iYKpiyv7BEljrstFXuP/s1600/summer2012+055.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXnJXiyKaxSf3_07k4TgJkE0yhV_kywV7y9oXjfs9sCjHhp_5hJr5EjeR2iP3Ka-15tN3LFIZYmop8ErGP4R42INmW3T78R7lgq2Mk3mTd2Wi9D69O1iYKpiyv7BEljrstFXuP/s320/summer2012+055.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He loved watching them from a safe distance :)</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAl_4kPZzfj3sBx9yZYJrHcV-oEQ5Rnmq0zAK69fxfmZRCiLsWrqQy9Jimaf-xnU-Y8-PDAqDs_qW1Wm6wel_WOUlzuspvAUp17EucGrZeP75wl4dabmlY8r5dwR4XOCGI9H-9/s1600/summer2012+078.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAl_4kPZzfj3sBx9yZYJrHcV-oEQ5Rnmq0zAK69fxfmZRCiLsWrqQy9Jimaf-xnU-Y8-PDAqDs_qW1Wm6wel_WOUlzuspvAUp17EucGrZeP75wl4dabmlY8r5dwR4XOCGI9H-9/s320/summer2012+078.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIiw3ckxyqhfnBnBKnNC9yA7RiWe6D77Uv55rr1Xh5wW7KgKd4iqIB8KKcnGGOtUPjoYMp8NqicJlfyXEat5JSUTQ53Eii6w_E3zJmCnU9ecv4N7dlgQyYzmVUXrm3pdgjNSXo/s1600/summer2012+072.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIiw3ckxyqhfnBnBKnNC9yA7RiWe6D77Uv55rr1Xh5wW7KgKd4iqIB8KKcnGGOtUPjoYMp8NqicJlfyXEat5JSUTQ53Eii6w_E3zJmCnU9ecv4N7dlgQyYzmVUXrm3pdgjNSXo/s320/summer2012+072.jpg" width="320" /></a></div>
We had a wonderful 4th of July! Despite Nick being a little troublemaker and getting into everything....which was driving me batty. He climbed into the pool with his clothes on (again), took every blanket out of the hall closet (again), and caused general mischief (again!) around the house. We cleaned off the grill, and fired it up for the first of hopefully, many summer dinners. I was not counting on Nick wanting to take part in the firework festivities, so I bought him his own things to celebrate the holiday with.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1E2yH5MaaWAoHoCYfHtTGVm_IJLh83zbzE1F7SYa2BiE-IFfnd0dUMBiQyCNn-yLJsDa9c4wqUQjDY_Cia1gFo2NW0j6xqdWzaX_XiLdeqyuvrx8rXsMLCsPK3kjTKPankF2w/s1600/summer2012+001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1E2yH5MaaWAoHoCYfHtTGVm_IJLh83zbzE1F7SYa2BiE-IFfnd0dUMBiQyCNn-yLJsDa9c4wqUQjDY_Cia1gFo2NW0j6xqdWzaX_XiLdeqyuvrx8rXsMLCsPK3kjTKPankF2w/s320/summer2012+001.jpg" width="320" /> </a></td><td style="text-align: center;"> </td></tr>
<tr><td class="tr-caption" style="text-align: center;">He quite enjoyed the red/white/blue glow bracelets</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3ibvJS-yYoxi2m-xZxtkQVry1a4NKxeUgypUFl7X0xbjSLzz0RiuHO9gR8suFQLoBx5F-ZOWBuWptCKooOHWfhBki7UtPagnppl2mJfNyuThBQkEGrGHOAomFBuyzOqexoUXL/s1600/summer2012+004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3ibvJS-yYoxi2m-xZxtkQVry1a4NKxeUgypUFl7X0xbjSLzz0RiuHO9gR8suFQLoBx5F-ZOWBuWptCKooOHWfhBki7UtPagnppl2mJfNyuThBQkEGrGHOAomFBuyzOqexoUXL/s320/summer2012+004.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They look cool when you spin them!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGIZ3F-LMCBxEZ07ZShmO8t8VelpUupoNShrWiafRXLeRlYbp7Wfwx7jpK0paWD1QKPWjld5SwX9AkYm_7n4abDIbYNMGVNpqe3iQxYeLPzOFSbDJZ_XT8WjnrAnpsKTrYReW/s1600/summer2012+010.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilGIZ3F-LMCBxEZ07ZShmO8t8VelpUupoNShrWiafRXLeRlYbp7Wfwx7jpK0paWD1QKPWjld5SwX9AkYm_7n4abDIbYNMGVNpqe3iQxYeLPzOFSbDJZ_XT8WjnrAnpsKTrYReW/s320/summer2012+010.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun with sparklers!</td></tr>
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Today it is back to school for Nick. He was a little tired since he stayed up last night, but still ran to the bus this morning :) He loves his school! Older guys are still sleeping, so for now my house is quiet. Going to enjoy that while it lasts LOL. Hope everyone had a wonderful 4th of July!Amyhttp://www.blogger.com/profile/09381893637886239136noreply@blogger.com0