Friday, January 27, 2017

Insert Catchy Title Here

A New Word?
Rory has started to say Mlk. Milk, without the "i" sound and glazes over the "l" sound. It often sounds like "Mk". This is amazing! This would be the first new word since he was 16 months old. Yeah Rory!
Anastasia can say Mama, Dada, and baba. She babbles continuously. I can't say for sure but I think I have a chatter box on my hands. Sometimes I think she's here to talk enough to make up for Rory's lack of communication.

Rory's ENT Doctor Appointment
Rory has a slight problem with his eye, it gets goopy every time he gets congested. Sometimes it shuts his eye or makes it look like pink eye (which it's not). 
We took him to an ophthalmologist where he referred us to an ENT (Ear, Nose, and Throat doctor). He felt since his eye only gets goopy when he is congested made it an ENT issue. 

We finally had his ENT appointment where this doctor feels like since it's his eye, it's an ophthalmologist problem. The ball is now back in the eye doctor's court. 

The Good Idea
Rory needed to get more fruit and veggies in his diet. But due to his texture aversions it's nearly impossible to get him to eat them. It doesn't matter how I cook / serve them, ALL of it ends up on the floor. 
Well, Anastasia is starting to eat solid food. That's when the idea finally hit me. He can use the stuff she eats. Her pouch baby food! It's filled with weird food combinations that a toddler somehow finds delightful. Honestly; a carrots, apples, and mangoes puree sounds so good to me. NOT! Perhaps separated? Oh, maybe as a nice cool smoothie. But a warm package? No thanks! 

BUT the important thing is HE likes it. How do I know? It doesn't end up splattered all over the floor. He even opens his mouth for more, which Anastasia learned from him. I feel like I'm feeding baby birds when they both open their mouths for more food at the same time. Anastasia is more vocal and will add screeches if she feels ignored for to long. (Which just intensifies the baby bird atmosphere).  

The Busy Day
I should have known it was going to be a busy day today. 
Heidi Anne has a case for her games, she's used to leaving it within reach of the babies because it's a hard case and is zipped shut. 

Apparently, Rory has learned how to unzip zippers. I did NOT
know this piece of information. I had my back turned to him while changing Anastasia's diaper. I look back to him and he is sitting calmly watching her game start up. 
I got a few pictures, because I'm a good mom like that. Then saved the game system from him and got him to watch Amazon Prime on my phone, Daniel Tigers Neighborhood. I used to hate that show, until it helps calm Rory down. As do car/ truck/train videos. 

Anastasia has learned her name. You call her name, she looks for you, then gives you a big toothy grin. Almost every time.
There are times when she's trying to steal Rory's milk from him, she'll start by pulling his hair. Which makes Rory release the cup. Rory on the other hand, will respond to any name you call him. Which resulted in the following incident:

Rory was laying down, drinking his Ma Mlk (More Milk). Anastasia caught sight of his cup and began army crawling to pull his hair. Just as she was about to tug, I startled her by saying "Anastasia, no!" 
Poor Rory looked at me with such confusion and began to cry. He thought I was getting upset at him instead of trying to save him from Anastasia. I got an innocent and adorable look from her. Want to know the ironic thing? Anastasia had a half of a bottle of chocolate soy milk she was drinking from before she saw his cup. 
Today, I noticed Rory was playing with his train. Not just the wheels, but the whole train! He'd push it around in circles around him. He'd even let me play with him a little by pushing the train between us. Normally, he plays alone but today he let me share his world for a few minutes. It was heaven!
As I was tucking Rory into bed I went through our normal routine of saying "Tell (insert name or object) bye bye, night night.", as we walk down the hall and to anyone or anything we see. I've been doing this since he was born and am normally meet with silence. But I keep doing it.  

I was shocked when I said "Tell Heidi Anne bye bye." Rory promptly responded "Bye! Bye!" and even waved bye! We kept this up for 3 minutes. Just letting Heidi and Rory say "Bye, Bye" to each other. I got a little teary eyed when it happened. Afterwards, Heidi Anne was excited, saying over and over "Rory's trying to say he loves me! He said bye to me!!"

Monday, January 23, 2017

Rory's Journey to the Spectrum

After months of waiting we finally have a diagnoses of what is plaguing Rory. He has Severe Autism Level 2. To be severe you need a minimum score of 14, he scored a 21. I know I shouldn't be so shocked. I knew in my gut he had autism, I was expecting him to be mild, maybe moderate. But severe? That threw me for a loop! 

I won't lie I've shed many tears and am a little heart-broken since I've gotten the news. Heidi Anne was inconsolable after she heard the results. Her first words were "You mean he'll never say I love you to me?" Followed by "Will people be mean to my brother or treat him like he's stupid? Because he's NOT!"     
Despite these sad feelings, I'm confident in the results. We took numerous surveys, had three different assessments, with three different people, on three different days. Which had a total of 8 hours of observation of Rory with and without us, in various situations. 

Being non-verbal is one of the key things that pushed him from moderate to severe. Another element is his headbanging and biting of his hands that he does when overstimulated. Nothing can prepare you to see your child bang their head against a wall, table, or floor repeatedly, and you can't do a thing to stop it. Right now I can pick him up, but he'll still try to bang his head in the air or headbutt me. I know a day will come when he'll be to big for me to pick him up. 

Right now Rory's getting as much help as we can get him based on where we live. Which makes the need to move to a bigger area more imperative then ever. We went ahead and got him on a few waiting lists for ABA Therapy in areas of Utah we hope to move to. 
IF he gets accepted before we move, I'm looking at 2-3 sessions a week for 3-5 hours per session (with Anastasia in tow). Once we move we can get him into private speech therapy, in addition to the 12-15 hours of ABA therapy, and the local Early Intervention's services. SO we're looking at over 20 hours a week of various therapies for the next few years. That will be my part time job until Rowan starts school.   

While I don't question the diagnoses, we're all still reeling from the gravity of it all. All my hopes of a "normal childhood" for him have gone up in smoke. But I have a feeling something much better then I could imagine lays down the road for him, I just have to help him get there. 

Friday, January 20, 2017

Dads N' Doughnuts

Heidi Anne's school had a special breakfast called "Dads and Doughnuts". It's just for kids and; dads, grandpas, uncles, ect. There was a little interview for the dads and children to work on together. Here are Char's answers in Red and Heidi Anne's answers in Blue.
Favorite Color: Blue and Red, Blue
Favorite Number: 7, 42 
Favorite Subject: Reading, Science
Favorite Food: Doughnuts, Pizza 
Favorite Dessert: Ice Cream, Brownies 
Favorite Sport: Dodge Ball, Skiing 
Favorite Animal: Cheetah, Liger (Lion & Tiger Mix)
Favorite Holiday: Halloween, Heidi's Birthday (Because he can't say Halloween, too). 
Favorite Season: Fall, Autumn 
Favorite Restaurant: Costa Vida, Wendy's
Favorite Candy: Kit Kat's, Almond Hershey's Kisses
Favorite Hobby: Playing in the Snow, Reading
Favorite Place: Home (with Mommy there), Home
Favorite Cartoon: Simpson's, Simpson's 

Tuesday, January 17, 2017

All About Anastasia

Lately nothing much has happened, another slow week (minus the fact that Heidi Anne had a second snow day). Therefore, I wanted to do a little post, with lots of cute pictures, of just Anastasia. Anastasia is now the same age Rory was when she was born. I can't imagine having another baby right now. More power to those who can do 3 under 2! Heidi Anne loves to pick out Anastasia's clothes for me, her baby sister is a real life, living doll to her. 

Anastasia loves to try to steal Rory's chocolate soy milk. She will roll close to it, then army crawl the rest of the way to get to that cup. Sometimes, she'll pull Rory's hair to make him drop his cup so she can steal it from him. Her clothes have many chocolate milk stains. 
She is super close to really crawling. She gets on all fours and rocks back and forth. Sometimes, when milk or another forbidden object, (for example, the lap top cord) is near she will lunge herself forward like a little seal to grab it. You can see Rory's puppy in the background, it goes with him everywhere. I once found Anastasia fast asleep and curled up next to "Doggie". 

Anastasia has to have her mobility! Here's a picture of her trapped by a Boppy. As you can tell, she is NOT amused. She's probably thinking "Don't take pictures! Save me!" I thought her face looked rather regal. Now she hates her once beloved swing because she can't move, even if she's swinging. She's had her taste of freedom and loves it.
She's doing so much better about sitting in her bumbo by herself. She hardly slides out from the side anymore. But we're still a ways off from her sitting up unassisted. My goal was for her to sit by Christmas, which then came and went. Then my new goal was by my birthday. Which again, came and went. Now the newest goal is her birthday in February, we'll just have to wait and see.

Anastasia is teething 6 teeth at once! They are super sharp, a lesson I learned the hard way, twice. She broke the skin and made me bleed both times. Don't worry, I've finally learned my lesson, don't let her put my fingers near her mouth. On the plus side it's given her an adorable toothy grin. She can say Mama and Dada, as well! 

She likes apple baby food, but adores sneaking bites of Rory's breakfast yogurt the most. He's kind enough to let her get away with it. She's not picky on the flavor, as long as it's his. 
She may not be the easiest baby, but she is sure a happy one. She loves the time when the others go to bed and it's just her, me, and the unlimited access to all the toys. 

Monday, January 9, 2017

Heidi Anne's Week at Grandma's

Heidi Anne spent a week at Grandma's, between Polar Express and Christmas Eve, Eve. Here are her adventures at Grandma's that week, as she remembers them. So the actual day and activity maybe slightly off. I guess this would be her first blog post! 

December 19-I helped Grandma watch Cousin G and wrapped presents. 

December 20-Grandma and I got our hair cut. There was an Elf on the Shelf at the saloon kicking a snowman's carrot nose. (Which Heidi Anne thought was super funny.) 
We went and saw Aunt S at work and peeked at the gingerbread house she made. Then we went to the Corner Bakery for lunch. I spent the rest of the day making crafts and wrapping more presents. 

December 21-I shoveled the driveway! I went to the post office and bank with Grandpa. Then we meet up with Grandma at Subway and had Subway for lunch. Then we went shopping. I spent a lot of time outside and played in the snow trying to build a fort. 

December 22-Grandma had a doctor appointment so I stayed at home with Grandpa. After the doctor's appointment Grandma and I went shopping at IKEA. It was a maze of a store. 

I made some more crafts for people as gifts. I also helped Grandma watch Cousin G. 

December 23-You (Mommy) and the babies came to Grandma's (and I quote) "You know what happened that day."

Friday, January 6, 2017

Happy / Post New Years

So time, time got away from me. I don't know the exact days something happened like usual. Oh, well. Here are the important things that happened. 

New Years Eve & New Year's Day
For New Year's Eve Char had the day off (he worked New Years Day). Thus 9:00 pm became the new midnight! I'm honestly impressed Heidi Anne made it that long, she's an early bird not a night owl. 

During the day we played a fun game called 5 Second Rule. You pick a card that has a request like "Name 3 things you need to make cookies" or "Name 3 African American Actors", "Name 3 types of butterflies." It sounds easy, right? But it's so hard when you're put on the spot and only have 5 seconds to come up with the answer. The game is really fun and older kids can play, too. We are so bringing this game to the family reunion this summer!

That night we watched "Storks" the movie. Which was kind of cute. We started "The Secret Life of Pets" but only made it half way because everyone started to drift off to sleep. Per tradition, we had some sparkling cider, which we chilled outside in the snow. Hey, if you have a ton of snow why not use it? 

The Day of Doctor Appointments
On Tuesday the 3 we had a doctor appointment for Anastasia in Salt Lake and Rory had one in Bountiful. 

Anastasia has been outgrowing her helmet due to a growth spurt. The prosthetic doctor tried to shave off as much foam as possible to give her a little more time in the helmet. But for the first time, she HATED the helmet. She'd tug, push, pull, rub her head and helmet. She was also abnormally fussy. (She's cutting 6 teeth at once, which means she was constantly unhappy).  
Her doctor appointment was with the cranio-facial plastic surgeon. He checked her head and made sure her eye socket was circular. While her head is still 10 degrees off, everything is growing normally. So she'll just have funky pig-tails. He gave the all clear to go helmet free. If we had caught it sooner, it would have resolved even more. SO from now on, if I think something is off, I won't delay getting help. It is comforting to know we did act as fast as possible, but were stonewalled by the insurance. Here she is enjoying her new found freedom. 
The next appointment was for Rory to determine where on the autism spectrum he falls. We won't get the answer until the 19th. The pediatric developmental psychologist watched how he played and interacted with her and myself. She would try to engage him in pretend play, which he wouldn't do. She witnessed his laying down on the floor to play with cars or other toys. She said she's never seen that behavior before, and thinks he does that to view things from a different perspective, to see how objects operate. 

He wouldn't play with toys the usual way, for example, cars he wouldn't crash together but would spin the wheels. She tried to get him to play with an airplane waving it in the air, he played with the propeller. She pretended to smell fake flowers, he rubbed the different fabric textures between his fingers. She brought out a toy dog, which he loved. She noted every little thing he did.   

We still have some more online assessments to do. I just wish we could get the results sooner than the 19th. I try to remind myself that some people wait years to get a diagnoses. Waiting 2 more weeks isn't terribly bad. 

The Snow Day
The day before a snow day was called, Heidi Anne's bus got stuck in a snowbank. They had to call for a rescue bus to take the children home. 

The following morning (at 5 am) we got a phone call and a text informing us the school was taking a snow day. Char couldn't get back to sleep, so he went and shoveled the driveway in -3 degree weather. I made him some hot chocolate as a thank-you and to help warm him back up. 

Heidi Anne worked on her first sewing project, she got a sewing kit for Christmas and I just haven't had the time to teach her. But today, I had the chance to work on it with her. 
She is very proud of completing her first sewing project, (which is a little stuffed fox), like a big girl. 
She also went sledding down the hill in the front lawn, made snow angels, and played with her friend. I read "A Snowy Day" to the little babies, (I think Heidi Anne was listening in as well). A pretty good Snow Day if you ask me.