Sunday, July 20, 2014

Running on Empty

Hello 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.

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.

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!

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!

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.

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.

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.

Thursday, February 13, 2014

Ten 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 :)

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.

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.

Saturday, January 18, 2014

Happy 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.

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.

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!

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.

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!!

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.