Tuesday, December 27, 2016

Christmas Week End!

December 23- Our Friday started out at 5:00am! Anastasia had two doctor appointments in Ogden then Salt Lake that morning. So we got Rory and Anastasia up and ready to go. Anastasia was wide eyed and bushy tailed. Rory was less then happy to be up so early. 

We drove down to Ogden for Anastasia's first doctor's appointment.  Since she was a preemie with respiratory distress syndrome and still weighs less than 20 pounds she qualifies for the Synergis shot. This shot gives her an immunity boost and lowers her risk for getting RSV. She'll have to have one shot every 28 days until May to be effective. The three of us had to wait there for nearly a hour after the shot to make sure she didn't suffer an allergic reaction from it.  (Which she didn't). So from now on, we can just get the shot and go. 

Next we drove to her helmet appointment. She's gone from 20 degrees off down to 10 degrees off. She's gone through a bit of a growth spurt. Which is a double edge sword, on one side yeah, she's growing. On the other side, she's outgrowing her helmet before it's had time to fully repair her head. If we keep this one on much longer it could impact her brain growth. If we don't get a new one her skull could remain deformed. We have to wait for the Cranial-Facial Surgeon to see if her occipital bone (eye socket) is still flat, which could cause her eye to pop out. Fun things to think about, I know. 

After that we went to grandma's for the weekend. Rory had fun playing with Cousin G. Grandma bought a pack of mini balls. I put them into a box, then placed Rory into the box full of balls. Ta-Da, mini ball pit. He LOVED it! 

After we got the babies settled, Grandma watched them while I took Heidi Anne to go shopping for presents. She got socks for Rory and Anastasia and a movie for Char and me. It was packed! I'm never shopping the day before Christmas Eve / before a big snow storm again!
After we got back to Grandma's house, Heidi Anne ran some errands with Grandpa and brought back pizza for our traditional Pizza Night Friday! The kids went to sleep not to long after dinner. 

December 24-The kids all got up super early. Call it a dry run for Christmas morning. Grandpa made a special breakfast of Eggnog French Toast. Heidi Anne helped Grandpa make it. By the time we all sat down to eat, Char came in from work. It was 6:30 am. There we all were sitting down ready to eat. (Good timing on his part). 
After breakfast, Char went down to sleep and the kids went to play. Rory found one of the cousins presents and feel in love with it, it was a stuffed animal dog. 
He kept petting it and repeating "Doggie!", which is amazing. But sadly, it wasn't his present, so we put it away before he became anymore attached to it. He then found a spatula and played in the ball pit again. Anastasia just rolled around. She did a LOT of rolling. She run into a wall or a piece of furniture and cry until she rescued herself or someone moved her back to the middle of the living room.
Later on in the day Char woke up and family started arriving to Grandma's house. The kids played with cousins and had a fun time. Everyone made their own little personal pizzas, which took some time given there were 20 people! 

After dinner, the kids (with the help of the grown-ups) did a nativity play. Heidi Anne was Joseph this year, (she was Mary last year) and Anastasia was baby Jesus. 

Then we had a gift exchange for the grown ups. The kids opened up pajamas. Finally, everyone shouted up the chimney to Santa. This is a British tradition where on Christmas Eve, you shout up the chimney to let Santa know what you want for Christmas. This year, half of the children made last minute changes to their wish list. Seriously, the very last second they changed their minds on us. 
 Oh, well! I told Heidi Anne Santa had already left the North Pole with the wish list she had written at school. Also, he was coming to our home in Wyoming and not to Grandma's house. So no need to get up ridiculously early. 
December 25-They got up ridiculously early. They did the thing!
We opened what presents were at Grandma's house and some stockings. It finally snowed over night and into the morning. Grandpa shoveled the walk, while Char dug out and loaded up the cars for the drive back home. 
Little Anastasia was out like a light. Exhausted from the lack of sleep the night before (not even 1 year old and knew something was special) and the getting up early part. 
By 9:00 am most of the family was back at Grandma's for a family breakfast. Rory and Cousin G were snacking while everything was cooking. 

After breakfast (more like brunch...well, more like 11:00 am) we headed home. It took me over 2 hours to drive back home though the snow. 

The kids were excited to see their Santa presents and unwrap their presents. Rory went straight for Anastasia's gift of a stroller / walker and baby doll, he couldn't be separated from it. 
Until she went for his Santa gift. Then he was all over his present. 
We spent the rest of the day playing, watching a movie, until Daddy had work at 5:00 pm. Then we played some more. 

Wednesday, December 21, 2016

Slow Week

December 11-We got at least a foot of snow from a recent storm. One of our neighbors was super nice and shoveled our driveway for us. Char is still fighting his illness and is very exhausted from the lack of sleep due to the constant coughing. 

December 14-Language therapy or physical therapy today, both therapist had strep today and didn't want to spread it to the babies. Anastasia got weighed and is now 14 pounds, 15 ounces. Slowly making progress.
 December 17-Heidi got to go ride on the Polar Express with; Grandma, Grandpa, Cousin A and Cousin H. This is probably the last year they'll ride the Polar Express because they're getting older. 
 The morning started off with a special breakfast of French toast. (I know, the crust looks like onion rings at first sight.)
They had fun riding on a train. Taking in the winter scenery. 
All the kids received jingle bells. They sang Christmas Carols and drank hot chocolate

Finally, they got to see Santa and tell him what they wanted for Christmas. 
Finally, Heidi got to spend the night at grandma's. 

Not much happened on the home front that day. I did start watching "The Man in the High Castle," I'm betting the book is much better. I'll have to put that on my wish list. 

December 18-Today we went down to Grandma's house to celebrate Aunt L's birthday. It was fun to see everybody. Heidi Anne decided to spend the rest of the week at Grandma's house. 

Anastasia had a ball rolling all over the place. I could hardly get a picture of her because she was moving around so much. Rory had fun exploring with Cousin G. Around 5:00 pm everybody else come to grandma's house. Aunt S made a great triple caramel chocolate cake. I should have gotten a picture. 

Sunday, December 11, 2016

Felt Christmas Tree and Making Strides

December 3- Char relapsed. He's super sick, again. 
December 5- Today we drove down to Riverton to have Rory's hearing double checked (per the first audiologist). It was a 3 1/2 hour drive back and forth. Since this was Primary Children's it was a lot more kid friendly. 

Rory had to sit still for the first test, which checked that his eardrums are functioning (they're perfect). The second verified that his nerves were working properly (again we got the all clear). 

The last test we had to sit in a booth with speakers on opposite sides of the room. Then different tones and sounds came out of the speakers, which he would turn his head to the side which produced sound. As a reward the speaker would light up with a little toy spinning around. He loved that bit. Again, he passed with flying colors.

So it's official, he's hearing is perfect and not the source of his issues. Not surprising but reassuring to know it's pure autism and not autism with hearing impairment. 
We started a new tradition this year, it's our felt Christmas Tree. Now the babies can play with the Christmas Tree to their hearts content. Rory can move the ornaments around all he wants, no harm done. Just try to keep him away from the lights of a normal tree. We discovered that his rule of "nothing can be on a flat surface" extends to trees. It was a disaster trying to keep him away from the ornaments. 

December 6-Each of the kids has their own special song that I sing to just them, frequently before bed. 

Heidi Anne's song is "You are My Sunshine", she always lights up a room with her smile. She tries to make new friends and be nice to people. She was also our Rainbow Baby, and we thought we'd never have another child. Her nickname for years was Sunshine.   

Anastasia's song is "This is My Fight Song", perfect for a NICU baby where everyday was a battle to survive. I loved the lyrics, they just fit her so well. There was a Piano Guys version which had bagpipers playing Amazing Grace in the background. It would make me full on cry, because that's my tiny baby, a little fighter, and most importantly, a survivor.

Rory's song is "Carry on My Wayward Son", It just seemed fitting since we named him after the Rowan tree which according to legend would guide weary travelers on their journey. But now with his autism it has more meaning when you read through the lyrics with autism in mind. Especially since wayward can mean-hard to control or predict due to unusual behavior.    

December 7- It's the 75th Anniversary of Pearl Harbor.  I had a great uncle that survived the attack on USS Arizona. He sadly passed away just before I was born. I think I would have liked him. In case you didn't already know, I love WWII history / stories. It could be about; the home front, the European or Pacific theaters, life behind the axis lines, ect. Pretty much anything regarding WWII fascinates me. Wow, that was a tangent. 

Well, Anastasia is making great progress with her physical therapy. She's starting to do some of the neck stretches all by herself, as long as you give her a reason to look in that particular direction. She's getting better at rolling around, it seems like she thinks "Why crawl, when I can roll around to where I need to go?" 

We had a goal of getting her to sit up by herself at Christmas, but she doesn't have the core strength just yet. Here's to hoping and working more with her on her daily physically therapy. (As of today I have 18 days left before Christmas, who knows?)
Rory had a huge breakthrough with his language therapy. Today he got off my lap and interacted a little with Ms. L (the therapist)! She's been coming once a week for 3 months and this was the first time he got off my lap to play the game she laid out for him to play with. She had an empty wipe container and little cards. The game is played by Rory, who opens the container lid, put a card in the wipe opening, and closing the lid. Now repeat for as long as he wants to play. 

He even made a few babble sounds. This is the first time he's babbled for her. Rory normally won't make a sound or do his mouth closed, muffled talking. But he actually opened his mouth and made sounds for her.  

December 10- It's been a slow latter part of the week. Filled with keeping a close eye on Rory and Anastasia while Char is still trying to get better. Anastasia is rolling all over the place, (which is technically a form of crawling). You have to watch her closely because she will get under the rocking chairs, find wires then tugs at them, and finally everything goes into her mouth. 

Anastasia got weighed on Friday. She's now 14 pounds, 11 ounces. The nurse said babies tend to stop growing so rapidly around 9 months old, she's now 10 months old. I can hardly believe she's almost the same age Rory was when I had her! Time does go by quickly! 

Rory's been obsessed with some boxes and wrapping paper. He loves to walk on the paper, making crinkle sounds while grinning happily. Anastasia likes to roll over to where Rory is playing and tare pieces off. (She's practicing for Christmas morning). Rory keeps trying to protect "his" box from Anastasia, even though I found another identical box for him to play with. Nope, he wants box 1 and only box 1. I don't know how he can tell the difference but he does. It's been more entertaining then it might sound. 

Saturday, December 3, 2016

Sick, Sick, Sick

November 27-Rory is still sick from yesterday. I've been mostly taking care of him. He only wants to be held while I walk around. He won't settle for sitting and rocking in a chair like usual. No, he has to be held and walked. 

November 28-Rory is very ill. If he doesn't keep fluids down we may have to go to the ER. This is the sickest he's ever been, poor guy. 

November 29- Today was Char's and Heidi Anne's turn to be super sick. I believe they caught it from little Rory, who has finally stopped throwing up. I feel like this post is starting to look like the diary in the old Oregon Trail game. "Charlie has dysentery". Remember getting to play that game at school if you were good? Or having it at home on your computer on CD if you were really lucky? (Side Note-I got that game for my birthday last year, call it 90's nostalgia. But it won't function on these new computers. Go figure).  

Rory had his first of three evaluations for autism this afternoon. I really liked his psychologist, she was very nice. Rory had a bad day and was way out of his comfort zone. The psychologist caught some things we had over looked. 

For example, he likes to get on my lap and make me clap my hands, which he did during the session. (Every time he does it I think of the song "I Can Make Your Hands Clap"). Apparently, it's a form of stimming. Stimming is a way to help manage control over fear, anxiety, or from being over stimulated.

She saw his "nothing shall remain on a flat surface" rule. Rory did his shoes can only be on the right foot as well. Both of which she attributed to his personal autism quirks. Also, he did his drunken sailor on land, side to side walk. Which she said is a sensory overload thing. 

By the end of the session the psychologist wrote "Autism" in big red letters across his paper work. She then said, "Yes, he does have autism, now we need to find out how severe he is". The psychologist believes he's mild, but being non-verbal may push him to moderate. She's going to see if we can be fast tracked so he can start ABA therapy right away. She suggested we give PECS therapy a try. Which is a form of speech therapy. 

November 30-Well, everyone is still on the mends but no one stayed home from work or school today, I call that progress. 

Today Anastasia had physical therapy. She is doing great! I've noticed that Anastasia is improving and progressing well when it comes to her upper body, but her lower body is lacking. She has started to army crawl, dragging her legs limply behind her, (like a beached mermaid). The therapist gave me some stretches to help strengthen her legs and back. She advised me to keep pushing her to sit up in the bumbo more. 
 Shortly after that Rory's language therapist came over. He still won't talk for her or make any sounds. But he did interact with her more this week! They played a game where he had to open a wipe container, put in a card, then close the lid, and repeat. He loved it. 

He sat still long enough for her to read a story to him. Then she brought out a sensory bouncy ball for him to keep, which was very nice of her. He loved playing with the ball. We talked about maybe trying the PEC System with Rory, she's going to talk with her supervisor about it. 
Here's a picture of Rory playing with his busy box. It has objects that light up, different types of switches that make that "click" sound, wheels for him to spin, a phone for him to play with, and lots of doors with different types of locks for him to open and close to his little heart's content. 

Later, a nurse came by to weigh Anastasia. She weighed 14 pounds and 4 ounces. Meaning, no weight was gained in the last 10 days. But she didn't lose any. We'll see next week if she gains anything.    

Tonight a lady from our church came to visit me. Heidi Anne asked if she was here for Anastasia or Rory. You should have seen the look on her face when I said the lady was here to visit with me.

December 1- How do I feel about getting a diagnoses? I feel a sense of relief. I've accepted that it's autism (we just need to have the evaluation to find out where Rory lands on the spectrum). I could be in denial, but that would waste precious time. I think I may have been in denial when he was 16 months old, and that delayed the help we needed. Bargaining is useless and again would just waste time. I think things slowly built up for me that something was off. I just didn't have a name for it. 

I guess I could be angry. I never really thought about that one. Grrr, Anger, Arggg! Nope, not me. 
I want him to have friends, though it may take years for him to develop those skills. I want to be able to go out in public without him suffering a meltdown. I'd like to be invited to gatherings (so I know people still want us around) but with the understanding we might not be able to make it based on Rory's day / mood. Or if we can come, I'll be focused on Rory so much (plus watching the girls) I might not be a social butterfly. But happy to be around. 
There is one thing I want, acceptance from others. Acceptance of his diagnoses, of Rory, and even his little quirks. I want him to be treated like any other 2 year old, but with some extra understanding of his unique needs. I don't want him to be treated like a freak, slow, or someone to be feared. While yes, he's delayed now, he may not be in a few years time.

December 2-Rory is still sick but I think he's turning a corner! He kept down the Pedilite mixed with a bit of Sprite. The nurse told me that as long as he had tears he wasn't that dehydrated. Despite him only having 3 wet diapers 2 days in a row. (Shaking head and sighing). 

He even ate a little bit today, which stayed inside his tummy. Rory started getting that spark in his eye just before bed. He gave me a tiny giggle with a smile. But he was still super cuddly, which is abnormal for him. We'll see tomorrow how clingy he is. 

What a week!