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.

Zoo

On July 3rd, the Columbus Zoo and Aquarium had a special day for current military personnel, veterans and their families. Because Noah's daddy is an Army veteran, we decided to take advantage of the free admission and catered lunch that was being offered. This was Noah's first visit to the zoo and he really enjoyed it. Here are a few more pictures from the day of fun.

Noah hamming it up for the camera!

Noah and Daddy feeding nectar to the lorikeets.

This was Noah's favorite ride by far! He went on it numerous times!



he really wanted to ride was the roller coaster in the background!

The elephant ride wasn't too bad once he learned to pull the handle to make the elephant go higher.

Noah loves trains, but this one was a little too small and slow for him.

Noah has always loved carousels. No matter where we go, this is the first thing he wants to ride.

Although it was terribly hot, we had a really nice time. Noah really loved the komodo dragon. He said it looked like a dinosaur. It was pretty funny. Every animal (and I mean EVERY) was, in Noah's words, "soooo cute". This statement covered everything from kangaroos to snakes. It was quite funny to come upon a crowd of people looking at a wart hog with their faces scrunched up in disgust and hear your kid exclaim, "Awww, he's sooooo cute!" Never a dull moment!

We can't wait until our next trip to the zoo. Although, considering it's a 60 mile drive and this trip cost us almost $100, it may not be until August. I'll post about the neurology appointment next time. I will leave you with a video of Noah feeding the lorikeets.

OT Graduation and Coming (Short) Trip

Life has been so hectic since school finished up in June. Why does it seem like life gets MORE hectic when school lets out? Anyways, Noah has been keeping busy with the usual things. Yesterday, Noah attended his regular OT and PT sessions. He did really well. During his OT session, his therapist, Noelle, asked me how I would feel about her graduating Noah out of OT. I wasn't quite ready for that, but I was okay with it. I'm really proud of how far Noah has come. He he has worked really hard and made so many gains. He began OT back in June 2008, so I guess that it is pretty fitting that he finish 2 years later. Of course, he still has sensory issues and he is still delayed in self-help and adaptive skill areas, but not to the degree that would require weekly OT sessions. He may need to attend "tune-up" sessions every once in awhile, but we don't expect him to require anymore extensive OT. We'll really miss the sessions with Noelle, but since his PT is in the same building we will still see her on a pretty regular basis.

We also found out this week that his SLP will be taking maternity leave sometime in the next few weeks and will not be back until the fall sometime. Because she has no one to take over for her, we made the collective decision to take a break from speech while she is on leave and return in the fall. A year ago, this would have freaked me out! Now, I realize that Noah is doing really well and taking a short break isn't that big of a deal. Miss Emily, his SLP, is making a packet of thing or us to work on at home with him. We'll see how things go. If he seems to struggle, we can always take him to another SLP (pretty easy considering our neighbor is one!).

This Friday we will be making the 60 mile trip to the closest Children's hopital to see a neurologist. Some of you may remember that back in October Noah had an EEG because of some staring spells that he was having. That EEG came back normal and we figured it was just some weird thing that he did. Well, after he had his surger in April and returned to school, his teacher and aide mentioned that they had noticed the same staring spells that we had noticed back in October. Noah's SLP also mentioned that she had noticed the same thing, so we decided to have a second EEG done in May. This EEG came back abnormal, so we have now have an appointment with a neurologist to see what it means exactly.

Since Friday is gonna be a somewhat stressful day, we decided that it would be nice to take a little trip to the Columbus Zoo on Saturday to relax. It's Military Family Free Day, so we won't have to pay to get in! That means we can spend more on souvenirs and food! Yay! Noah hasn't been to the zoo, so this should be fun. So it looks like the next few days will be crazy, again! Hope everyone enjoys there weekend ahead.

So Proud and Noah Funny

Noah had his preschool program and stepping up ceremony last week. Everyone involved with Noah was concerned that he would not do well during the program because he has been very unpredictable in situations that involve lots of kids and music. One day he will sing along and have a good old time, but the next day he may cover his ears, scream like a banshee and/or lash out at himself or others. I am proud to say that on this day he did amazing! He sat in his seat (with his aide holding his vibrating mouse standing behind him), sang, did all the cute little hand motions and even went up to the front of the stage to get his certificate. I was one proud mama with tears rolling down my cheeks as he ran to me after receiving his certificate.

Now on to the funny part. One of Noah's favorite songs from the program is "My Mother is a Baker". He has been singing it quite a bit lately, only his version is a little bit different from the original. Here is the original first three verses (in case you are not familiar with the song):

The original version:

"My mother is a baker, a baker, a baker.
My mother is a baker. She always goes like this. Yum. Yum.

My father is a trash man, a trash man, a trash man.
My father is a trash man. He always goes like this. Pee Yew.

My sister is a singer, a singer, a singer.
My sister is a singer. She always goes like this. La ta de da, and a toodley doo."

Noah's version:

"My mother is a maker, a maker, a maker.
My mother is a maker. She always goes like this. Yum Yum.

My father is a trash can, a trash can, a trash can.
My father is a trash can. He always goes like this. Pee Yew.

My sister is a stinker, a stinker, a stinker.
My sister is a stinker. She always goes like this. La ta de da, and a toodley doo."

Let me just say that I am REALLY glad that Noah doesn't have a sister and I should probably quit calling him a stinker so much! Did I mention that he sings this song at the top of his lungs for the whole world to hear? Yeah. That's my boy!

As you can see, they sat Noah in the back row just in case he had to be hustled away. The wonderful lady in the purple shirt is Noah's aide, Miss A. She was awesome with him this year. As far as I know she will be back with him again next year.