Happy Valentine's Day!

First off I want to tell everyone Happy Valentine's Day! It has been way too long since I last updated Noah's blog, but things have been rather unusual around here. Noah's daddy and I have both been hosptitalized with health issues amongst other things that have been keeping us on our toes. Our computer was also down for a time which made it hard to blog. But I am back now and hope to blog regularly about my little munchkin!

Surgery
There is so much to catch up on that I am not sure where to start. First Noah had surgery back on November 8th. It was nothing major and he did really well. He is completely recovered and back to his old self. He will be going in for dental surgery sometime in April, so we'll see how that goes.

IEP
We had Noah's latest IEP meeting during the first week of December. It was pretty much what we expected. Noah still receives OT, PT and ST. The only major difference from his last IEP is that his aide is only part-time now instead of full-time. I guess that is a good change, but I'm not really sure. I was really concerned when the director first approached me about it, but she assured me that if Noah needed her the aide would be there for him. We agrreed to the new set up and so far things are going along. I won't say things are going well, but they are going okay.

Potty-Training
Noah is officially potty-trained since last summer! I am so happy and proud of him. He just did it on his own. We gave up trying to pressue him and he just sort of started going on the potty. I know how hard it can be to potty-train our kids, so I am very thankful that Noah is potty-trained at 5.

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! 

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!)))

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.

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.

Sorry for the Silence

First, I just want to say, "thank you" for all the wonderful advice I received after my last post. It is so comforting to be able to post how I am feeling and not be accused of being a crappy mother.

Second, I wanna wish a VERY belated Happy Mother's Day to all the cool mamas out there! Hope that you all had wonderful Mother's Days with your munchkin.

Third, I want to apologize for my lack of postin as of late. I have been somewhat keeping up with everyone else's blogs, just haven't been able to find the energy to comment or post on my own. I'm not sure what is up. I've just been in a kind of funk lately. Things have been a bit on the rough side around here lately. Noah just hasn't been himself the last couple of weeks. I'm not sure what is going on, but he has some testing coming up on Tuesday. I am hoping that he is just having a really hard time readjusting to his normal routine and not something more serious.

I promise to post again soon, but right now I am just really lacking the spunk to do so. I will keep up with everyone else, though. Thanks for all the support and understanding!

One Week

I love this picture, although it makes him look so grown up! Where is my little munchkin?



It's been exactly one week since Noah's surgery. Thankfully, he has recovered quite nicely. The first day was a little rough and we spent the whole first day watching Pixar movies. I think he watched Wall-E at least four times! The first night we lovingly refer to as, "The Night from Hades". Medicine was refused, medicine was forced, medicine came right back up. Yuck! After that first day and night, he seemed to improve quickly. He was eating mashed potatoes and playing video games by the second day. This weekend he played some with the girls next door and we had a playdate yesterday with one of his friends from Early Intervention. He hasn't really complained too much. He did say he was sick today and when I asked him if his throat hurt, he said yes. I gave him some pain medicine and he has done fine since.

Mama, on the other hand, is going a little crazy. :)

I am really looking forward to his returning to school next Monday. I love Noah to pieces, but I am really close to reaching my breaking point. I think I am due for a few hours away from my munchkin. I know that I am truly blessed that Noah is as verbal and high functioning as he is, but sometimes the incessant chatter and repetitiveness is overwhelming. He's also developed some vocal stims, mainly when he is playing video games. And I am so sick of Transformers I could just scream. I swear if Noah askes me to "make Bumblebee a robot" or "make Optimus Prime a truck" one more time, I'm leaving home! LOL

Of course, I kid (sort of). Actually, he's been really good considering all that he has gone through. He's been a little whinier than normal and more picky when it comes to eating, but he's really done well. I think that I am just out of practice. I am not used to having him 24/7 since he started school. I guess this is good practice for this summer, as I have major doubts that the district will offer summer services.

Speaking of this summer, Noah's dad and I are trying to find some activities for Noah to be involved in. His OT thinks that Noah would benefit from some social activities. I am all for social activities. The only problem is finding some that are geared toward three-year-olds. All the YMCA activities are for four years and up. I'm sure we will do story time at the local library and probably Families in the Park if it is offered. Our support group is planning some trips to the zoo and things like that. So we have a few ideas, but nothing really scheduled. Anybody have any other ideas?

Tonsils, Adenoids, and Ear Tubes. Oh My!

We arrived at registration at 7:00 am. Noah was wide awake and studying everything. He was really cute. We made our way to his room, where the nurse had us change him into a hospital gown. Noah was being really cooperative and allowed the nurse to check his vitals without any complaints. He did, however, repeat "What's that make?" about 50 times while pointing to various objects around the room. The nurse was very patient with him and tried to answer all his "questions". We settled in to watch Mickey Mouse Clubhouse after the nurse gave him his "loopy" medicine (versed, demerol and atropine for those medical types). He never fell asleep, but did become somewhat groggy.

When it was time for his surgery I carried Noah to the holding area while Daddy followed. Within a few minutes, after answering a bazillion questions, they loaded Noah onto a gurney and took him to the operating room. He never fussed as I gave him a bunch of kisses and he was led away. Daddy and I headed to the cafeteria to get a drink and something to eat. Within 45 minutes the ENT called and said that Noah had done great and was in recovery.

We headed back to Noah's room. About 40 minutes later, the nurse from recovery brought Noah back to his room. He was sitting up in the crib they used to transport him and asking, "Where's Mama?" It was music to my ears! I rocked him and fed him juice with a syringe for a couple of hours. When he finally woke up completely, he decided to watch some cartoons and play with his cars. He was drinking really well and everything was honky dorey. We encountered a small problem when Noah had some potty (or lack of) issues, but that was resolved. At 1:30pm Noah got to take his first ride in a wheelchair to the car. He was ecstatic about the wheelchair ride!

All in all, the day went really well. I'll leave you with a couple of pics from the day of surgery.

Right after his surgery. He was still able to give me a little smile. He is a little swollen, though. (Notice the Transformer's pillow. It's his fave right now.)

A couple hours after surgery. He and Woof Woof are relaxing in the rocker. (Did I mention he's really into Transformers right now?)

Tonsils and Tubies

It really has been a hectic, stressful month. Here are a few of the highlights (which I will probably elaborate more on later):

1. We had our first parent/teacher conference for Noah.
2. Noah had his first set of school pictures taken.
3. We started OT/PT again.
4. We adopted a new dog.
5. We got lost on our way to a movie in Columbus. (No laughing allowed! It was traumatizing!)
6. We found out that Noah needs to see a specialist for his eyes and may require surgery.
7. We found out that Noah WILL have surgery.....tomorrow! (But NOT for his eyes.)

This mommy is stressing something terrible today. After four months of nearly endless ear infections, increased snoring, lots of restless sleep and a nasty bout of tonsillits, Noah's ENT decided that some action needed to be taken to help Noah feel better. As much as I didn't want to admit it, I had to agree with him. So, tomorrow morning Noah will be going in for surgery to have his tonsils removed and ear tubes placed. We have tried to prepare Noah as best we can. (Maybe somebody should have prepared mommy a little better!) To help him understand what is going to happen, his speech therapist at school and I made him a social story . We have been reading it to him a few times daily. At first Noah really seemed to like the story, but now when I bring it out to read to him he says, "No story. Don't wanna read that story." Maybe we have read it to him too much? LOL

Anyway, positive thoughts and prayers tomorrow for my munchkin would be greatly appreciated. (His mama could probably use a few, too!)

The Pick-Up

My watch reads 2:23 as I pull into the half-empty parking lot of the local County Board of Developmental Disabilities. I’m early. I brace myself and, holding my breath, head into the building. Pick-ups are always nerve wracking. As I pass the office, the secretary calls out, “Hi Michelle!” I smile and return her greeting. She must sense my anxiety because she looks at me and says, “I didn’t hear anything today.” I heave a huge sigh of relief. “That’s great,” I say (and looking up silently whisper “Thank you”).

I make my way into the area that houses the classrooms and play areas. As I enter the play center, I am greeted by the sight of 14 little ones lined up in a neat little row dressed in their cute little hats and coats. They have just come in from playing outside and are waiting their turn at the drinking fountain. A quick glimpse tells me that, yes, this is Noah’s class. I scan the heads of the little ones, looking for that unmistakable red Lightning McQueen hat that Noah wears to school EVERY day, but I can’t seem to find it…..at first.

My eyes come to rest on Noah’s aide. She turns to her right, and there off to the side of the group, is my sweet little boy. I feel tears start to well up. He is standing alone, halfway into the speech therapist’s office,. He is staring fixatedly at the fluorescent light in the ceiling. He doesn’t even seem to notice that I have entered the room, but his little “friends” have. Almost in unison, cries of “Noah! Your mommy’s here! Noah!” rise up from the line of 3-year-olds. Still Noah doesn’t seem to notice. Finally, his aide kneels down and touches Noah on the shoulder. She speaks to him and after a few seconds he looks up. “Mama! You’re here!” he cries and comes running to me. I pick him up and squeeze him for all that I am worth. He pulls away, looks at me with those beautiful eyes and says, “I need to go home.” As new tears spring to my eyes, I reply “Okay, Noni. We’re going home.”

Whining

Noah's sleeping. The house is quiet. I should be napping with him. The last two weeks have been a roller coaster ride. Up, down, around. In, out, and back again. Do I sound bitter, or what? And it really hasn't been that bad. It's just.....been.

Noah had two REALLY good weeks at school. We had two reports. Minor things really. Last week, he got the "quiet as a mouse" award. Huh? My kid? Big surprise there. On Thursday, less than 20 minutes after dropping him off at school, we got a call from the school nurse. "Noah has a fever of 100.2 and he's really whiny. He just wants to be held and rocked. Could you come get him?" She also went on to tell us how good he is about taking his medicine for her at lunch (he takes 3 meds at lunch). She said that if she is late getting there, he is waiting on her. Pretty cute, but pretty sad too. When I picked him up, he was grabbing his throat and saying his mouth hurt. He ran a fever of about 102 Thursday and Friday. On Friday night, his fever hit 104. Needless to say, we ended up in the ER. He has tonsillitis. Wonderful. He is doing better now. No fever yesterday or today. I'm just worried about all the antibiotics he has been on lately. Poor kid.

He has been on hiatus from PT and OT the last two weeks. Apparently he hit his limit of OT/PT visits for the year. His new year doesn't start until April 29th. I think we have everything worked out and he should be able to start back on Tuesday. It has been so sad to go to his speech appointments because we have to drive past his OT and PT building and Noah always cries and says, "I wanna go see Noelle. I want Noelle." He really loves his OT. He's even been asking about Miss Laurie, his PT. Can't wait to see his reaction when he sees Noelle again.

I know being sick and the change in routine and not feeling well is really getting to him. He is so cranky and irritable. He's been crying way more than usual and has been more aggressive toward himself and others. He's back to hitting himself or the dog or me when he is upset. He's also back to head-butting and head banging. I was so sure we had seen the last of those. I just want things to get back to our normal. I just want my little guy to be the happy kid I am used to having around.

We had a support group meeting on Monday. It was nice. I love those people. They are like a second family to me. This journey would be so much harder without the wonderful people that I have met online and through the support group, Thanks for being here.

Random Stuff

First I want to say thank you for all the wonderful advice on the toilet training topic. You are all great!

Noah has had an awesome week. His therapy sessions went better than I had expected. He even reached a few milestones.

Physical Therapy
Noah had PT last Tuesday and his therapist, Miss Laurie, finally got Noah to jump. With both feet off the ground at the same time! We all cheered (even Noah). He was so pleased with himself.

Occupational Therapy
On Friday we saw Noelle, his OT. I, once again, brought up the issue with him not walking outside when there is snow on the ground. She was already prepared. She and Noah took their shoes off and stuck their feet in bins of different things (rice, corn, beans). Noah actually seemed to enjoy it. Then, Noelle covered the floor in shaving cream and they walked in that. Noah LOVED this. I was really surprised because he is normally a neat freak. Then, she brought in a HUGE bin of snow from outside. Noah was a little hesitant, but eventually they made snowballs and snowmen. Finally, we all went outside and played in the snow! Noah actually didn't seem to mind it much. At least he didn't ask to be carried. So far, so good. (He does still want carried into school, but I think that is more of a separation issue.)

Speech Therapy
Noah saw Miss Emily on Friday, too. He did really well. We are still working on sequencing and wh-questions. Noah did something that surprised us, though. At the end of his sessions, Noah always wants to play with the bubbles (sound familiar?) and usually he gets rather upset when he has to put them away. Miss Emily always gives him a warning and says, "one more time and then we are all done". When she was done instead of crying, Noah looked at her and said, "We're all done. Time to go. " Neither of us could believe it! I was so proud of him!

School
School was closed all last week (and most of the week before) because of the snow, so I was kind of nervous about how he would handle going back after over a two-week hiatus. I shouldn't have worried. He did cry when I dropped him off Monday and had to be carried into his classroom, but when I picked him up his aide and teacher both said that he had a great day. On the way home, I was looking through his valentines with him and asking him, "do you like E? Do you play with N?" things like that. When I asked him, "Do you play with K?" Noah looked at me and said, "He beat Noah. He beat my back. He said sorry." Oh My!! This about floored me. Normally, Noah doesn't share anything about school. I can't believe how far he has come.

Yesterday was even better. When I picked him up his teacher told me that he had the best day so far! He even asked to go potty and used the toilet like everyone else. (He made somewhat of a mess, but who cares!) Everyone was so excited for him! He has went two days without any behavior reports being sent home. I think that's a record for him!

I was really worried when he first started that so many hours at school would be too much (he goes 5 1/2 hrs a day, 4 days a week), but he seems to be really thriving and making huge gains there. I miss him when he is at school, but I guess I have to do what is best for him. He just seems so little!

So, as you can see, this has been a really good week. Can't wait to see what the next week brings!

Noah on TV and Feeling Better

A local news station airs an exclusive series called "The Autism Puzzle". The series features stories about children and adults living with autism and the resources available for people on the autism spectrum. The series was started by the sports anchor, whose two sons are both diagnosed with autism. A few weeks ago, he came and filmed our support group. He wanted to do a story about the wonderful woman who started it. Seriously, this woman is great and this support group is just a huge blessing. The story was very well done and he managed to film all of the kids that were present....including Noah! So here is Noah's television debut.

Noah missed school yesterday because of a fever of 102 and as he says it a "broken ear". We went to the pediatrician last week for the same reason, but he didn't really see anything wrong. Yesterday, his pediatrician decided that Noah probably has mastoiditis. That is why Noah's ear has been hurting so much without the pediatrician seeing any infection in the ear itself. He made it back to school today and did really well. He didn't even cry when I dropped him off. This makes 3 days without a single incident report!! Yippee!!

****UPDATE: 7:30 pm**** Okay, I spoke too soon. Noah just spiked a fever of 103.4.....jeesh!