So Much to be Thankful For

Yesterday we celebrated the best Thanksgiving at my parents' house. My dad deep fried the turkey, my step-mom had done so incredibly much preparation the day before and tons of work the day of, it was fantastic. Little Man got the normal sequence of events a little backwards, and decided to nap on the couch BEFORE dinner. ;) Silly boy.
Beans took the whole day as his opportunity to be Grandpa's Cling-on. I don't think he was more than a couple feet away from him for most of the day, even had to sit next to him at dinner. I went outside to see him during a break in cooking. I sat down only to be pushed away by a little boy ~ possibly for the first time ever ~ who wanted alone time with his gramps. I made my way back inside, laughing to myself, but made him oblige me with this pic first. ;)Grandma J's new dog Ciri is the funniest thing. She loves wearing her clothes (see her modeling the latest SpongeBob trend below). When she's out on the porch and wants to come in, first you see this little head peering in the back window. When that doesn't get her anywhere she starts leaping. Out of nowhere you see this little dog, down to her little paws, completely off the ground as she jumps at the window. It cracks me up every time.
With that prelude, there is so much for us to be thankful for. Little Man is finally feeling safe and secure, both at home and at school. He knows the thing he's feared for so long cannot touch him now. Both kids are in the perfect classes at school and making progress in leaps and bounds. I'm doing well on track to our road to a better life. Beans has a couple HUGE anniversaries coming up next week that I'll get into then, but for now let's be thankful for the amazing improvement in his health. Last night Little Man had a little too much excitement and could not get to sleep. He wasn't being naughty, just could not sleep for anything. Nights like that make me even more thankful that he has nursing set up. He was able to be watched and stay safe while I was able to get rest to deal with them patiently today. I'm constantly thankful for the help. And don't forget the biggest ones - we have a roof over our heads, food in our tummies, an amazing extended family that loves us and friends who understand us. Yes, there is much to be thankful for. We are so very grateful.

Fair, ER and a Playdate - What a Whirlwind

It's been quite a wonderful few weeks around here. Like always, life has had its bumps in the road, but overall it has been one of those times when you remember just how lucky you really are. November started with the North Florida State Fair (didn't know there was a state of North Florida, but whatever ;) ). I was able to get super discounted tickets that included admission and unlimited rides. We had a great time. First we went to the petting zoo. The kids weren't particularly thrilled with looking at animals with the prospect of rides waiting, but I convinced them we had to at least take a peak. Believe it or not, they loved it. They fed a bunch of animals carrots. They saw goats in shirts and little goats that all wanted the same slice. They saw a camel, a zebra, kangaroos, yaks, zebu, llamas, alpaca and many other four-legged beasts.We left the petting zoo at just the right time to catch the Wild World of Animals show. The kids loved the baby monkey clinging to the trainer. Hysterical laughter followed the 3-year-old monkey as he pounded off the back wall, jumping around like, well, a monkey. They saved the best for last. The trainers put up a second fence then brought out an 18 month old hyena. Wow! I'd never seen a live hyena before ever. It was beautiful, and I couldn't believe how big it was.

After the show the kids could wait no longer. We headed for the rides. Once again I was amazed at the kids' fearlessness. Little Man has always been a little daredevil, but Beans has always been much more reserved. Let's just say he's broken out of his box. We went on a hang-gliding ride, Tilt a Whirl, the Scrambler, Musical Express, twirling rides, roller coasters, you name it. Here they are on a spinning ride that started horizontal then went vertical. Before we left, Little Man had to go on one last amazing ride. He was the tiniest person on there. The ride launched and the whole seating thing went twirling and spinning and whirling up high in the air. Personally, I was just fine with my two feet on the ground, but the fearless one loved it. Beans was too short to go on, I think he secretly was happy to be on the ground with me. :P

Little Man is on the lower right corner of the seats in this pic. He screamed with the best of them and came off with the biggest grin I've ever seen. We had a little trouble making it to the car as full-blown overstimulation had set in by that point and, let's face it, what kid wants to leave all the fun to go home?

We went to the fair on Thursday, the 5th. The night of the 6th, 7th and 8th were very strange. Little Man, who requires multiple medications each night to help him sleep, put himself to bed. Early. Obviously something was wrong. That something presented itself on Sunday as he was finally able to communicate he had a headache. Initially I didn't worry too much about it, and still sent him to school on Monday.

Within two hours of school starting my phone rang. It's never good when caller id shows a call from the school district. It was Little Man's teacher. He was having his first bad behavior day of the entire year, and I needed to come down to the school. By the time I got there, he had calmed down and was able to tell his teacher that he had a horrible headache. And he did mean horrible. He had his head down in his hands and was clawing it. His teacher told me not to punish him - which believe me, was very hard not to do - but to take him to the pediatrician right away.

I called the doctor who told me to take him to UrgentCare. Now if you know anything about Little Man, you know he doesn't hold still for anything. I knew something was really wrong when he laid down on that little table in the exam room and fell asleep for two hours. When he woke he was grabbing his head again. I was tired of waiting at this point, having not even seen the doctor yet, and have to admit I almost politely, made the issue known. The doctor finally came in, examined him and sent us over to the Emergency Room for a CT scan. By this time it had been hours since we arrived at UrgentCare and the prospect of waiting all over again at the ER was bad enough, but an emergent CT scan was enough to make anyone's anxiety level go through the roof.

I have to say though, the scariest part was the headache coming in waves. When it would get worse his face would flush and the rest of his body would mottle, he would lay down in the waiting room and need quiet and not to be touched. Thank goodness to my FB friends who kept checking in on us, helping to pass the time. The hospital finally got him back to a room where he continued wanting the lights out and laying perfectly still. Finally, finally the doctor came in. His CT scan was normal, thank goodness, so that ruled out the "really bad things." They weren't really sure what the cause was, but it was likely a migraine that affected his autonomic nervous system. This is a pic shortly after we got home, his face is flushed, wanting his eyes closed and just laying down again.
Since then he's continued to have frequent headaches, though not to the same extreme. I'm going to need to call his neurologist for some advice. He just can't keep going on like this. :(

We did have another stroke of luck though. The day after the ER visit I left Little Man with my parents while I had to take a test at school. I made it back out to our tiny town, picked him up and had just gotten onto the street when the transmission went out in my car. What's the lucky part? There's so much! It could have happened when we were coming home from the ER, it could have happened on my way to pick him up that day while I was driving for miles without cell reception, there are just so many ways it could have been worse. My dad, stepmom and grandma helped immensely in getting me back my wheels. Thank you!!! You can't even get to the store without a car here so it's incredibly important.

That stressful couple of weeks has been followed with more happiness though. It always happens this way. :D Beans brought home a letter from the county sheriff congratulating him on making Honor Roll!!! Now Honor Roll is always something to be proud of, but this is his first year in full inclusion. He now has no academic accommodations and is doing regular second grade work independently! What an incredibly proud mommy moment!

That brings us to today. The kids had the day off school for Thanksgiving, which means I had the day off school unofficially. ;) We had an amazing playdate with good friends. We went to the park and the kids played for hours. I got to visit with another mom and had a great time myself. It's so nice to go out with people who understand my special kids and it doesn't phase them.

Tonight the kids were totally worn out and went right to sleep. Hopefully for a nice long rest. :) Tomorrow we're going to my parents' house to celebrate Thanksgiving. We have so much to be grateful for, so very, very much. I say goodnight with a pic of my little Beans. Sleeping with his turtle from Aunt A, his chameleon from Ronald McDonald House and his hospital buddy from when he got his PICC line. Buddy is anatomically correct with a scar just like his. What a precious set of boys I have.

Trick or Treat

Halloween started out with a bit of a trick last night. I went to feed the fish, after the kids were in bed, and discovered that several had died. They'd been fine just a couple hours before then all the sudden... There were a few left alive so I decided to try and salvage them. I got them all scooped out into a bowl. I left the bowl on the counter while I cleaned out the fish tank. Apparently it was more than a certain striped feline could resist. Just as I was finishing the tank at the sink I heard *splash* I turned around to see the cat's tail darting behind the wall and the five remaining fish flopping around on the floor. Now I don't know about you, but touching fish is not my favorite thing to do, yet what else could I try? I scooped them back into the bowl, poured water in and hoped they made it through the night. I put them in a cupboard to avoid a third near-death experience in one day.

This morning I got everything set up again and amazingly, all five fish survived the night. Hopefully they'll make it over the next few days/weeks while the tank finishes cycling. Chasing fish is not my favorite activity - especially while they flop around the floor.

The cause of the second fish misadventure of last night, in his Halloween costume

The night went much better. I got Luigi and Star Wars Clone Trooper all dressed up and makeup applied. Little Man was insistent we drive into Tallahassee to Trick or Treat at the mall, so that's what we did. Beans was having a bit of an off day, a little cough, a little tummy trouble, so he wore his pump and we were thankful for his chair. There were several stores giving out candy, but it was enough to make the boys happy. :)


Little Man got a little overstimulated by all the people but he's made so much progress lately. When it got too much for him he shoved his candy bag into my hand and used his words to tell me he'd had it. We were able to find a quiet store to slip into while he calmed down. What an improvement! Instead of ruining the night it was one little blip.

On the drive home we were laughing our butts off. I can't even remember what was so funny but we had the best time cracking each other up. They're now properly sugared, bathed and teeth brushed so I suppose I should get them into bed. Little Man's nurse will be here soon and they're both still up. Happy Halloween!!!

Shower of Happiness

This last week and a half has had day after day of happiness. Sunday, the 11th, we went to my parents' house to celebrate Little Man's birthday. He was very possibly the happiest boy around. Grandma J helped him make gluten/dairy/soy free cupcakes. A great start to the visit for my chef-to-be. Grandma cooked a delicious dinner of salmon, vegis and a fabulous salad. Little Man was spoiled rotten with presents - his cooking set, a puzzle, some nice new clothes (yes, he actually likes new clothes), a Bionicle and his much hoped for RC helicopter. We all had a great time visiting and it really turned his birthday weekend from sad to happy. Thank you Grandma and Grandpa!

This past Saturday, the 17th, Little Man's school had their Fall Festival. He was chosen as his classroom representative for the coronation ceremony at the beginning. It was a very cute ceremony with each class representative's name being read off, them coming up on stage, bowing, receiving a medal recognizing them as the representative, then taking a seat in front of everyone. He did such an excellent job waiting his turn and then sitting quietly on stage while the ceremony finished. They even had little boutonnieres for the boys and bouquets for the girls.

Sunday brought another special day. It was the ceremony and reception for his guitar scholarship. Grandma and Grandpa came to watch Little Man perform and it made it all the more special. He was having a really bad tremor day, and the chair was too high, but he performed well nonetheless - and loved every minute of it! After several performed they had a big ceremony that he again sat quietly through! Then he got to go on stage when his name was called and receive his scholarship certificate. He was quite the proud Little Man.

On the way back to the car I took advantage of the men being dressed up and took this shot of my guys. Aren't they handsome?

And the final bit of good news this week - Little Man's personal care assistant was approved! Monday night the overnight aide started and tonight his evening aide is supposed to start. I got to sleep through the night, in my own bed, twice in a row for the first time in as long as I can remember. My patience level is already so much higher and I feel so great. It's weird getting used to someone being in the house, but I've accepted the fact I need help. I'm thankful for every hour someone can be here.

The Party That Wasn't

We had great plans for this party. Little Man was so excited. His first ever friends birthday party. When we lived in Utah he always had plenty of cousins to come to his party. This year we invited all four kids from his special ed class, hoping that at least one would come. No one RSVP'd, but when I called to RSVP for Beans for a party he was invited to at the same time, the parents were surprised that I'd called. I still hoped for the best.

We had the sign (which yes, will be taken down in a few days because of his name, but I had to share it with you for now at least)...we had the balloons, notice the LegoVille mylar balloon. It was his theme for the party. We had everything - plates, cups, placemats, tablecloth, favor boxes ...
we even had the pinata Little Man had his heart set on, and filled it with a boat load of candy.

The party was supposed to start at 3:00. At 3:30 no one had arrived yet. Little Man was having fun playing in the sand. He climbed on the playground for a while, threw sand on the slide and was rather enjoying himself. He had helped me hang the Happy Birthday sign and we'd set signs out around the park directing his friends to our pavilion.

I finally had to ask the dreaded question, "How long do you want to wait?" He said thirty minutes and I figured that was reasonable. He still wasn't phased that no one was there.

After 25 minutes I told him I needed to take the cake and ice cream to the car and he was okay with that, but when it hit 4:00 and I told him we should probably head home, reality finally set in that no one was coming to his party. :(

There's not much that's more heartbreaking for a mom than this face. :( I can't believe not one kid showed up. He was so excited for this party, he'd been waiting for weeks, his friends had told him they'd be there (although admittedly, no one RSVP'd) and his heart was crushed.

He was such a trooper though. He helped me get everything back to the car. I told him we'd take back the party favors we'd bought for his guests (Lego Racer cars) and buy something nice for him. All sadness was forgotten when he chose a Star Wars Clone Trooper voice-changing helmet.

One great thing about Little Man is he's all about living in the moment. If I brought it up, he'd still be sad, but it's over now and he's gone on with life.

I have to say I have the most amazing family. One little note on facebook, in a reply no less, that no one came to his party and they went into action. First Uncle C called, then Uncle J called, followed by Aunt S and Aunt H. It was so touching to see all my siblings calling my boy to make sure he knew he was loved and had a good birthday after all. Thank you guys! You are wonderful and I love you all!

Cougar of the Week!

Man it's been exciting around here lately! I'm almost afraid to pinch myself for fear I'll wake up from this dreamland of wonderness (like my new word?). Yesterday Beans hopped off the van from school just beaming. He had a paper clutched in his hand, but I couldn't see what it was from the doorway.

He bounced into the house, and I asked him the normal, "How was your day?" The smile erupted as his eyes beamed and he said he got Cougar of the Week! (Student of the Week) He's been hoping and hoping for this award since school started. As part of the award, he got to go on the school TV program that morning, got to choose a friend to eat lunch on stage in the cafeteria (he said he had a hard time choosing - he wanted to choose R and B and E and T, but he could only have one so he chose H - another amazing moment for me, He Has Friends!!!), and then he brought home his Cougar of the Week certificate.

I immediately hung the certificate on our board to honor him. Every time something like this happens - from the "smaller" ones of 100% on a spelling test, a new friend, who he played with at free time, to the bigger ones like Cougar of the Week - I sit back in awe. The little boy who used to hate people, who hid or screamed if they talked to him, who learned so much in preschool with the most amazing teachers ever, who backslid in kindergarten but has gone back to those skills he learned in the autistic school, has now launched. Nothing can stop him now and I sit back and realize how lucky we are.

Little Man's 10th Birthday

He had a great day! He woke in the morning and I let him open his gifts, unsure if it would cause more issues at school making him wait or letting him open them before he went. It turned out to be fine. :) He was so excited, full of big smiles all day.

At 2:00 I came to his classroom with cake. This was the first time I'd seen his class all together because usually I'm in classes when he is. Well it's quite obvious why he's so happy there - it's a class full of Little Man clones. Not in looks, but all five of those boys act the same, react the same and are hyper, rambunctious little cuties. He's among good company there.

Little Man while the class was singing to him

The boys sang him Happy Birthday and then we had cake. Or sort of did. Only two kids would eat it lol, and Little Man was not one of them. He's still getting over his cold so he didn't eat anything really for two days. I'm sure he'll make up for it at his party tomorrow. :)


We came home and Beans gave him his presents, followed by the sweetest birthday hug in the history of brothers. Little Man even let him do it and kind of hugged him back.


The evening was full of birthday wishing phone calls from almost the entire family. Every time the phone rang, someone was calling for him! All of his grandparents called, including those on his dad's side, his cousins called, and his aunts called. He went to bed one happy and content birthday boy. What more could we ask for?