This Crazy Life

Life has really gotten the best of me lately. Needless to say I have been terribly neglectful in visiting other's blogs and even more neglectful in updating my own blog. There has been so much going on that I don't even know where to start.

Noah's daddy was admitted to the hospital on Nov. 29th. He has an autoimmune disease, and he let things get a little out of hand. He was able to come home on Dec. 6th, which was also Noah's 4th birthday.

Noah finally turns 4!!

Unfortunately, our neighbor's house caught fire and burned down on the same day. Luckily, she was at work and her beloved dog made it out fine. Unfortunately, her three beloved cats did not. So we did not have much of a birthday celebration. Noah opened his presents and took a treat to school for his friends, but other than that it was pretty much a blah kind of day.

Now that he is 4, Noah thinks he is a big boy and we have taken full advantage of the situation to really push the potty training  issue. It's still hit and miss, but it is slowly improving.

He got his Wii!
Unfortunately, he's having some trouble figuring it out and hasn't touched it much since he opened it!

Our town also suffered a real tragedy on December 9th. I live in a fairly small town with a population of about 13,000. Everyone either knows or knows of everyone else. An acquaintance that I graduated from hight school with lost 3 of her children in a house fire. Our whole community was really rocked by the loss of three little ones. They were only 7, 6, and 3 years old. Today was the funeral and the whole community is still in mourning. 

Today was also Noah's last day of school until after the holidays and they had the Christmas party and program. This was really fun. Noah had a really good time. He actually participated in the program. This was no easy accomplishment. After the program was finished his aide let me know how close Noah came to sitting out in the hall during the program. Apparently he was having some problems during the rehearsal earlier. Thankfully, he worked through his sensory stuff with his aide and was able to participate. Here's a little video. Sorry about the quality, but my camera isn't the greatest when you zoom in.

He really had fun. And did I mention how much I love his aide this year? She is great with him!



After the program we went back to the classroom to do a craft and see a special visitor. Noah is finally "getting" the whole Santa thing this year.

He even sat on Santa's lap and told him what he wanted for Christmas. I can't believe how much he has grown over the last year.

Noah also had his annual IEP while Dave was in the hospital, but that's a whole other post! 

Happy Thanksgiving

Today is Thanksgiving and I have so many things in my life to be thankful for. Instead of sitting here and typing up a long list of the usual things that people are thankful for, I will sum it all up in one little video.

Happy Thanksgiving from my family to yours!

Halloween Rewind

I sound like a scratched record when I say that things have been crazy busy around here! I've been stressing over Noah's upcoming IEP and spending way too much time analyzing every piece of information that I have to prepare. I'm not sure why I am stressing this one so much, but I am. Anyways, we had a wonderful Halloween this year. We went trick or treating three times and I think Noah actually said, "trick or treat" exactly once. LOL I also helped out in his classroom during their Halloween party. Here are a few pictures from Halloween week.



This is Noah at our city's Mardi Gras parade. Noah likes parade for about the first 10 minutes, then he is ready to go home.



Classroom Halloween party! He had a blast!

Noah loved his cupcake and was the first one to finish!

The class planted "magic seeds" the day before and went outside to see if they grew. Noah was slightly taken aback when he realized that the pumpkins were not in the exact location that they planted the seeds in. It took some fancy footwork by his aide and I to convince him that the seeds must have gotten blown by the wind to a different spot. (Have I ever mentioned that my kid is a perfectionist that forgets nothing?)

The seeds were originally planted where Noah is.

I found a magic pumpkin!!

Then they decorated their pumpkins.

Getting ready for Trick or Treat!

Trick or Treating!

Noah Story: I had a blast helping out in his classroom! I was blessed to witness one of the many milestones this year. After the pumpkin hunt and snack, Noah's teacher decided that the kids needed to release some energy. She played some music and had the kids stand up and dance. Noah joined in! Now for those that don't know, last year Noah would not have been able to handle this. He would have needed headphones or even had to leave the room. And there was no way he would have participated with his peers. This year he is actively participating! And no headphones! I am so proud of him. Here's a video. It's a little long, but it sure is cute!

(((editor's note: I can't seem to get the video loaded yet, but I will try again tomorrow!)))

Two Years

Today marks two years since Noah's autism diagnosis. Two years ago today we were in a strange city listening to a doctor we had never met tell us that our beautiful, sweet, smart, soon-to-be two-year-old had autism. The doctor that day told us that there really wasn't much that could be done to help him. Her advice, "Keep up the speech and occupational therapy, keep sending him to Early Intervention classes, and come back in a year." Oh, she also ordered a CT scan because of his hypotonia and referred us to the feeding clinic. She spoke with us about communication devices and the possibility that Noah may never develop language. Everything was so negative and saddening. The doctor that we saw that day left us with little hope for any improvement. I felt as if she had stolen Noah's future and all the dreams I had for him. She couldn't have been more wrong.


Since that day Noah has blossomed. His last speech evaluation showed his receptive language to be "within functional limits" and his expressive language to be "mildly delayed". I'm not saying that his language is normal, not by any means, but he is doing far better than anyone could have hoped. He still faces numerous challenges, but he has had so many victories. He still has some echolalia, he isn't potty-trained, he can't dress himself, and he can't carry on a conversation. But he can count to 20, say his nightly prayers, give affection, make you laugh, name all the Transformers, and beat all the Decepticons on his Transformers video games.


I spent a long time in denial. I spent a long time mourning the kid that Noah could have been if not for autism. I even spent some time questioning why God would do this to me. Now I spend most of my time marveling at the kid that Noah has become and thanking God for blessing me with this amazing child.

School and Seizures

I can't believe that it has been over two months since my last post! I am so sorry. I am not joking when I say that life has really been crazy-hectic lately. There has been so much going on that I don't even know where to begin this post. Guess I'll just start with two of the more important topics: school and seizures.

Noah started school on August 30th .

So far he's doing really well. We had a small issue on the first day because he wanted to ride the bus, and he wasn't supposed to start riding until the second day. Of course, this led to a meltdown when I dropped him off at school. His aide had to pry him out of my arms and carry him to his seat. I really hate to see him get so upset.

On the second day, all went fine.

He was so excited to finally ride the bus.

He has a new 1:1 aide this year, and we all love her. So far, she is great. Noah doesn't want anyone else to change his pull-up or help brush his teeth. Every day when I go to pick him up, he is either playing with her or being held by her. She really seems to "get" Noah and his little quirks. Since school started, we have only received 5 - 6 behavior reports and 4 of them were on the same day. This is still better than last year when we received 5 - 6 every day. His teacher is the same teacher he had last year and she has also noticed that he is very different than last year. We think that part of the dramatic change can be attributed to having his seizures under control. Speaking of which....

We received the final MRI results from his neurologist. Considering that 70% of seizures have either a genetic or no identifiable cause, we were kind of surprised to find out that there is an identifiable cause for his seizures. The MRI showed that Noah's left (I think, but can't remember) hippocampus is smaller than normal and he has mesial temporal sclerosis. In layman's terms this simply means that part of Noah's hippocampus has been replaced by scar tissue. This is where his seizures are originating from. This probably happened before he was born, but we're not sure. He has done exceptionally well on the anti-seizure medication and we really haven't noticed any seizures since he started the medication.

I promise another post really soon. If not, someone hit me over the head!

Friday's Freeway Fiasco

Friday morning my alarm went off at 4:30. I rolled over and thought to myself, “This is WAY too early to be crawling out of bed.” This thought was especially true when combined with the fact that I hadn’t crawled into bed until after midnight the night before. You see, Noah’s pre-MRI instructions included keeping him up 2 hours past his normal bedtime. Since his normal bedtime is normally around 10pm, that left us all up until midnight. Definitely not cool when you have to be up at 4:30 the next day. I did manage to get myself out of bed and ready for the short 60 mile trip to Nationwide Children’s in time to wake Noah up at 6:00 (his instructions also included waking him up 2 hours earlier than his normal time as well). I’m always happily surprised at how well Noah handles waking up early and this morning was no exception. He woke up with a smile, asked me where we were going, and let me dress him. His only request was that Nanook and his blankie come along. Gladly! We managed to leave the house around 6:30, which was my goal. We were going along just fine and had actually made it to Columbus before disaster struck.


We were on 270E when the car gave a shudder. Hmmmm….that was strange. A mile or so later and we felt another shimmy. Uh oh, this can’t be good. We pulled over (on 270E, yikes!) and let the car rest for a minute. We started it up again and that’s when Dave realized that he had little to no power. Now we were in big trouble. We managed to coax the car to the nearest exit, which luckily enough led us to an Aladdin Shriner’s Temple. We parked the car and noticed the smoke coming out from under the hood. It was nearly 8:00 and we really didn’t want to miss Noah’s MRI since he had gone all night and morning with no food and drink, so we called a taxi to take us to the hospital.

Within ten minutes the taxi arrived and we were on our way. Twenty minutes and $30 later we were at Children’s. We found our way to the MRI department, filled out all the paperwork, and waited to be called back. Noah was so good! He was patient and didn't whine about being hungry or thirsty. The nurse put numbing cream on his hands and arms, asked lots of questions, and took Noah's vitals. Then we watched Spongebob until it was time to go back for his test. The only time that Noah got upset was when they started his IV. He cried some and fought the medicine, but in a matter of a few minutes Noah was out. Half an hour later, he was back in his bed sleeping off the anesthesia. He did really well.

While Noah was in recovery, David called my dad to come pick us up. My dad arrived around 11 and Noah was released around noon. We made our way back to the car and David called a tow truck to tow our car the 60 miles home. David rode with the tow truck and Noah and I rode with my dad. Noah slept all the way home. When the mechanic checked the car over, he discovered that the coil pack was cracked and the computer was shorted out. We just spent $200 on the transmission and now another $500 on the coil pack and computer. Hopefully, we will have the car back tomorrow. It was a very eventful day. We should get the results of the MRI in a few days.

Neurology

Since my last update, there has been a few things going on. Way back in April right after Noah returned to school following his surgery, Noah began having some strange behaviors. In October of last year, we noticed some similar behaviors and Noah underwent an EEG to rule out seizures. Because the EEG in October was normal, I thought nothing of the return of the staring spells. I figured he was just out of his routine and having a hard time readjusting. When his teacher, aide and speech therapist all expressed concern over the staring and unresponsiveness, we decided it might be a good idea to have another EEG to rule out anything new.  On May 18 we had a repeat EEG done. This time was a little different. Noah was far more sleep deprived and actually slept for the sleeping part of the test. We set up an appointment with neurology for August 31 on the assumption (You'd think that I would know better than to assume anything. What's that old saying about assuming? LOL) that the EEG was normal. A week later we received the results from Noah's pediatrician, who immediately got in touch with Children's and rescheduled Noah's appointment for a sooner date.

On July 2, Noah had his appointment with neurology at Nationwide Children's Hospital. Because they were booked, we did not see an actual neurologist and instead saw a CNP. She was awesome and treated Noah so well. She noticed his hypotonia immediately. She could also tell that he was (and still is at times) a toe walker. She asked SO many questions. She even held Noah up to the window so that he could see all the construction work going on outside. After her exam and talking with us, she consulted with the neurologist to get her opinion. The consensus is that Noah is having seizures. He was diagnosed with complex partial seizures and we began medication a short time later. She also set Noah up for an MRI at the end of next month to rule out any possible cause (although the odds of that are pretty slim).

I think that the seizure diagnosis hit me just as hard or harder than the autism diagnosis. I had a half-brother that was an epileptic. He passed away in his early 20's due to complications. A few days after Noah's diagnosis, I got a phone call from the Epilepsy Foundation. She left a message on my answering machine. I haven't called her back yet. I will. Sometime. I'm coming to grips with the diagnosis now, but it's still hard. I know he will be fine. He's such a great kid. He's dong well on the medication. It took him awhile to adjust and we are increasing the dosage VERY slowly because he became excessively drowsy when he started. Sorry this post is so long, but I had to get some stuff off my chest.