Thursday, December 26, 2013

2013....Year in Review

To 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.

January: Things started off crappy. Right on January 1st we found out about a death in the family. Way to welcome in 2013, I should have known right then that this would be a year to be reckoned with.We made the decision to look at buying a house, and started the process with the VA. January 25th, 2013: 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. WRONG. 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.

February: 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.
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.

March: 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.

April: 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.

May: 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.

June: After a few e-mails to his neurologist with videos of Nick doing his odd movements, he wants us to see an epileptologist.

July: 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!

August: 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.

September: 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.

October: 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!

November: 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. November 12th: 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!

December: 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!!!




Thursday, November 14, 2013

Anxiety......

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.

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!!

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.

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!!

In case I don't get on here again for a while, hope everyone has a wonderful Thanksgiving, and Happy Holidays!!

Thursday, August 22, 2013

All 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!

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.

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!

Sunday, August 04, 2013

Puberty....

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.

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.

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.

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.

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.

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.

Saturday, June 15, 2013

Summer!

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 :)
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!

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.

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.

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.

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!

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 ;)

Friday, March 29, 2013

Long 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.

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.

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.

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.

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!!

Friday, February 15, 2013

The Crash...and Depakote

It 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.
Something must be wrong. But nothing was found.
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.
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.
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.
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.
But so did we.
This has taken a mental toll on us as well.
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.
Right now his med sheet is:
1.5mg risperdal in the a.m. when he gets up
.25mg ativan at the same time.
.25mg ativan at noon.
1.5mg risperdal before dinner
250mg depakote before bed.

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.
But, that is where we are now. I can only hope that things start improving. We shall see.

Saturday, January 12, 2013

Holidays 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.

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.

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.....

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.

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.
Nick in his hoodie from his Nana!

Both my boys playing with their Christmas presents!

Stuffing his face with cake..LOL

And making a marvelous mess! :)

A short walk in the snow. Literally. As in it took longer to get him dressed for this.

The babysitter! He loves watching the rotisserie spin!