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!

Saturday, November 26, 2016

Thanksgiving Week 2016

November 19-We spent most of today getting packed up and ready to spend the night at Grandma's house. It amazes me how much preparation goes into spending just a night away from home. I think having 2 under 2 really complicates matters. You don't want to pack 100 diapers but you don't want to run out of any and have to buy more when you know there is a whole box back at home. But as Char says "It's not like they're in the middle of nowhere, there are 3 stores within a 5 minute drive of their house."

We (everyone but Char) left in the afternoon and got there just as it got dark. (I HATE, driving in the dark, the longer the drive the more I detest it! It gives me anxiety.) 

Grandma and Grandpa were out on a date night when we arrived. All the kids were exhausted from the days' activities and the long drive. (My kids don't sleep in the car during drives for some reason.) I was grateful when Rory went down because Grandma had the table all set up. Rory has a rule about nothing being allowed on flat surfaces. I keep having visions of broken glass, cuts, or stitches fill my head. They were all out by 8:00, even my little night owl, Anastasia.

I tried to sleep but couldn't. Around 8:30 Grandma and Grandpa came back from their night out. I visited with them until well past 10. 
November 20-Today we celebrated Thanksgiving at Grandma's. Everyone is either working or will be out of town on Thursday, Sunday was the day everyone could come together. There were 12 adults and 6 kids, that's a table for roughly 20 people.  

I woke up at 6:17 when Anastasia gave a startled cry and then simply fell back asleep. But I was awake despite my attempts to go back to bed. I went up to the kitchen around 6:30 to find everyone else in the house wide awake. Apparently, Rory woke Heidi up around 5 am, she then woke up Grandma and then a tad later Heidi Anne woke up grandpa. Who then made Egg Nog French Toast for everyone. It was like one of the "If You Give a Mouse a Cookie" mornings. 

After breakfast Anastasia was up (for real this time). Rory also discovered the stairs, which he promptly tried climbing up. Grandma learned that if you sit on the stairs he won't go past that stair. Now he can go up (YEAH!! He couldn't before.) But he can't climb down, he turns around and takes a step in mid-air. He doesn't understand how to slide / climb back down the stairs the right way.

Char came around 11:30 am, he had gone home to sleep and let the dog out. Then drove down to Sandy. He helped out with the kids and I helped out with cooking preparations as much as the kiddos would allow.  
Rory had fun playing with the blocks, playing outside, trying to go up those stairs, and playing with his cousin G. He had some good interactions. He gave cousin G blocks to play with. Played in the tent a little. But then he needed a nap. It's like he can only take so much interaction before he needs to take a break from people and recharge. 

I have to talk about him going outside, he went out in bare feet on the grass!! (Side note-it was warm enough that spring flowers were blooming). I have spent months exposing him to grass, he hates the feeling of different surfaces on his feet. He used to refuse to come into the kitchen because the floor felt different. I kept putting him on different surfaces in bare feet to help him with his sensory issue. I wasn't sure it was working until there he was, walking on grass in November, it may have taken since March but we got him there!  

Anastasia was just a happy, talkative, bubbly baby girl rolling on the floor, wanting cuddles, or chilling in her swing. She's sadly getting to heavy for the swing, I think it has a 16 pound limit and she's over 14 pounds. 
After Char arrived, people slowly began to trickle in. I was able to help out in the kitchen until Anastasia wanted me. Which was about the point the kitchen began to get crowded.(I made the vegetarian stuffing).  

It was the first time everyone had been together since Aunt Millie's wedding in the middle of August. Dinner was really good, with lots of vegetarian options, good food, yummy turkey. I can't remember who brought or helped cook what, it seems like everyone had a hand in making the feast. But Aunt Emily's homemade rolls really stand out. (Isn't it amazing you can spend hours prepping, baking, and cooking and dinner is done in less than 45 minutes.) 

Cousin A put together a performance for the family. She had been practicing different songs on the piano for days on end. Heidi Anne and some other family members had to quickly learn their parts. After half an hour of 
rehearsals it was time for the show. (Mainly because we had to get going and Heidi Anne was part of the act). 

We had to leave right after the performance, which was before dessert was served. It was getting late, the drive was going to be rainy and in the dark. (Blog, you know my feelings on driving in the dark.) Heidi Anne had school the next morning, and the babies were tired. Not that sleepy tired where they fall asleep in the car, but the cranky kind where they fuss the whole ride.  

Aunt Sarah was super nice and gave us some of her mini pies to eat at home. I loved her lemon and mixed berry pie! It's my new favorite pie. She also made an cinnamon and apple pie. Or maybe they would be considered tarts....Either way they tasted good. 

November 21-Today we deep fried a turkey! Don't worry we took all the precautions. We got a deep fryer on clearance last year and have waited that long to try it out. (Not sure why we waited that long come to think of it, maybe because I was a little timid about the whole thing). Great news is the house didn't burn down. The turkey tasted delicious, it was super juicy! We also did a brown sugar brine for 2 days to add some flavor.
In addition to the turkey, we made green been casserole, homemade stuffing with turkey sausage, and rolls (well, the rolls were store bought). 

Since Char had work that night we planned on doing an early bird dinner (at like 4:00 pm). Heidi Anne was supposed to come home right after school, instead of going to her after school program, which ends at 5:30 pm. But she forgot. So we waited 15 minutes, called the school and found out she was there. We went ahead and had a nice quite dinner and made a plate for her to eat when she got home. 

Heidi Anne was conflicted about all this. She wanted to spend time with us, but on the other hand, she had fun in Spooky Science (her after school program) testing out a little launcher she designed. It was one of those lessons that you can't have everything in life. It's hard with her ADHD, but she also needs to learn to control it and remember plans she has made. 

November 22-Today Anastasia had a dietitian appointment down in Ogden. It sounds simple but it took nearly half the day. I can't wait until we live closer to all these clinics. (Just watch, as soon as we move we won't need all these doctor appointments anymore. Murphy's Law.)

Anastasia weighs 14 pounds and 5 ounces. She's drinking roughly 6-8 ounces every 3 hours, about 36 ounces in 24 hours. Yes, even at night. Someday I'll get a full nights sleep, but it is not this day. 

We really need to work on her eating solid food but the stupid tongue thrust gets in the way. Making whatever food goes in her mouth forced right out again. We just need to push for speech or OT therapy to come check her out. We've been trying since August to have her seen. But whenever I think I have an appointment set or the specialist will come to physical therapy, something always happens. How is it I can accomplish so much for Rory but can't seem to get speech therapy for the life of me for Anastasia?

November 23-Not much happened today. We made some more stuffing because my kids and husband are addicted to it. I must admit, I do love this recipe we're using and the turkey sausage. Today is just a prepping day for tomorrow. Tomorrow we're having Thanksgiving at my friend, Valerie's house, then going to grandma's for pie and to spend the night. 

It snowed at least 4 inches! There was a plow truck that became stuck in front of our house. You could easily hear the driver restart the plow over and over. A police officer even showed up, not sure what service the officer could provide but there he was. Finally, the plow moved on. 

November 24-Happy Thanksgiving! Char has a 16 hour shift today!

This morning we finished packing up and left the house around 12:00 pm. It took nearly an hour and a half to get to Valerie's house. We got there around 1:30 pm. 

I haven't seen Valerie in nearly 2 years. Last time I saw her I was pregnant with Rory!  to say it was wonderful getting to see her and her kids again, would be an understatement. Rory has developed a fondness for going up stairs but doesn't know how to go down them. Which made it so I'd have to bring him back down the stairs before he toppled down them. 

Rory really blends in with her children really well. He fits in their age spacing and has matching blond hair (and even the same hair cut as her little boy). All the kids wanted to hold Anastasia, which she was totally cool with. She's such an easy going baby who just loves to be held. 

Dinner was wonderful, but fell during nap time. Rory only wanted to eat rolls. Heidi Anne was pretty good. Anastasia must of felt left out because she demanded to be feed, too. I sadly didn't get any pictures. Sad face! As soon as we finished eating we had to go, so the babies would take their naps. I hated to eat and run, I wanted to spend more time catching up with Valerie. 

After Valerie's, I noticed we were low on gas. Well, the pumps were closed at the gas station in the small town. We drove the longer way to grandma's in hopes of finding an open gas station in Ogden (which we did) much to my relief. The girls fell asleep but Rory stayed wide awake. 

We got to Grandma's thinking there would be pie, but everyone else had a change of plans. But it was still nice to spend time with them. I did get to eat one of Sarah's mini pies. Heidi Anne liked that they made rolls for her. 
 Grandpa brought in some snow for Rory to play with in the kitchen. Which he loved. Apparently, Char did a similar thing around the same age. 
Then we built a little fort in the living room. Rory wouldn't go in that night but Heidi Anne thought it was the perfect place to read a book. After a long day the kids and I were down for the night by 8:00 pm. 
November 25-Anastasia said her first word today! It was Dad-Dad. That makes Dad the first word for all three kids. Char is batting 100!

Grandpa made a special breakfast of waffles. He always tries to make a special breakfast when we spend the night. 

It was a busy day. Aunt Laura and Anthony brought cousin G just in time for lunch. After which, Laura, Anthony, Grandpa and Heidi Anne went to go see Fantastic Beasts. Grandma and I stayed home with the baby boys and Anastasia. 
The boys had a lot of fun playing together. But they wore us ragged. They ran around in a big circle, played with the tent, played a version of Hide and seek. Played with blocks and cars. They refused to go down for a nap, despite many attempts on Grandma's part. 

Sarah and Blake came by for a visit. Shortly after, everyone returned from the movies. We had Cafe Rio for dinner (I haven't had that in years). After dinner Sarah and Blake had to go. Grandma went to put Rory down to bed.

While she was gone, Anthony and Grandpa started to set up the tree. Heidi helped put on some decorations. I was holding Anastasia. Grandma was shocked when she came downstairs to see the tree up and almost finished. 

November 26-Rory woke Grandma up early this morning. He had thrown up all over the crib. She gave him a bath. Shortly after drinking his pedisure he threw up again. I thought it was time to leave. I felt bad because Grandpa was going to make pancakes for Heidi Anne but I wanted to get Rory home as soon as possible. 

Luckily he didn't get sick in the car. Once we came home I put him down for a nap, where he slept for 6 hours. We gave him some more fluids, which he promptly threw up, again. 

To make matters worse, I also got sick. It was a rough day. 

Monday, November 21, 2016

500th POST!!

November 11- This morning was an awesome interaction morning. To start with, he wanted to wear shoes today! He brought me the shoes to put on his feet, and he kept one shoe on. This is HUGE!

On top of that he would say ball, throwing balls around and yelling "Ball!". He'd also chase the dog and shout "Doggie!". He even brought me his sippy cup and made a "Meh" sound, I'm going with he's trying to say "more" or "milk". I did signs for both to cover my bases. I tried to get video of him talking and playing but as soon as he saw the phone he wanted to see pictures of himself. 

Great morning, overall. Major milestone type day. One of those where you could almost believe nothing is wrong, but something is still missing. Right, he keeps muffled talking. He won't look at you or point for the life of him. He keeps playing with the wheels of the cars / trains. Not the whole car, just spinning the wheels. But I'll take it!

I went to wake up Charlie to witness him having a good morning, when the switch flipped and he went back into his own world. He just wanted to be rocked, wanted to have his sippy, wouldn't say a single word. It's just a bit frustrating to see the transformation from interacting with me / the dog to a withdrawn little, baby boy. 

He loves the dog, he is always sneaking food to her. She puts up with him pretty well. I have a feeling Rory is going to get his own dog (betting a therapy dog at this point) before Heidi Anne ever gets one of her own.   
I just had to share this cute picture of Anastasia! She's such a determined, happy, bubbly tiny girl. She loves doing baby push ups. You've got to love that little tuff of hair she has atop her head. I bet I could start putting it in baby ponytails. 

November 12- Anastasia was super talkative today. She would make different sounds like "Ooooo", "Goo", "Aahh", more babble sounds and blowing raspberries. Just talking up a storm at the top of her lungs. I honestly think she was more verbal then Rory today. Which is super conflicting, I feel like shouting "Yeah, she's cooing and making sounds, hooray for Anastasia!" But that's followed by, "Wait, she makes about as much sense as Rory does and she's 11 months younger." (Insert sigh).  

Some days I feel alone on this new path we're on. I at least have a friend who's been down a similar road, which helps to have someone to talk to. But it's still frustrating and maddening, and so very slow. I feel like a video game character running into the invisible wall at full speed. You need to get somewhere in a hurry but there are other forces that keep you from progressing. 

I guess what I'm getting at is people say "Early detection and intervention are the key" but we're still 7 weeks away from our first real evaluation. Which turns into over 2 months before we receive the first report or official diagnoses. At least I have a vague idea of when I'll start to get some answers of what this is or isn't, some families spend years in the dark.     

November 13-He gave me and Char a kiss tonight! It's the very first time he's given kisses to anyone.

I was giving Heidi Anne her good night kiss (like every night since she was born). When Rory leans in and makes a kissy sound near my cheek. Then giggles, and does the same thing to Charlie. He repeated this twice. I tried to get him to keep giving kisses or to give Heidi Anne a kiss. But just as soon as it began it suddenly ended with no rhyme or reason. 

He surprised me again when I tucked him in for bed by saying "Bye." It's the first time he's ever said "Bye" to me, the first time he's said it without Char having to leave for work! 

Rory has these moments, where he's in our world, or we're in his and he's interacting like a normal 20 month old. I call them miracle moments. I can't tell you how infrequent this moments truly are. Tonight we had 2 of them! 2 normal toddler interactions, in 1 night! It's like the Supermoon that's going on tonight. The brightest in 70 years. (Maybe the moon had something to do with it...).

November 14- Today Anastasia had her orthotics (helmet) doctor appointment, to see how much she's improved over the last month. She's gone from 20 degrees off to 15.2 degrees off, that's amazing. The doctor says it shows we've been using the helmet the required 23 hours a day.
 The doctor isn't sure how many more months she'll be using the helmet. The goal is to get her down to 6 degrees difference, (in a perfect world it would be 0 degrees different). If she hits a growth spurt that could speed up the process. Easy answer: No one knows how long she'll need the helmet for. 
As we were leaving the doctor's office Char noticed the front passenger tire was really low. We could try to make it up the canyon or just bite the bullet and get it checked out in Salt Lake. We chose to get it fixed, which was a good thing because we had a nail in our tire. Downside, keeping 2 under 2 occupied for an hour. 1 of whom likes to knock anything off a flat surface, (the tire place was filled with display upon display that needed to be rescued.)

November 15-Today Anastasia had her 9 month well child check. I try so hard to get these appointments on the same day, but it never works out. In fact, I tend to get them 1 day apart, I'm just lucky I guess. 

Since she's a preemie they didn't even bother with the developmental checklist or maybe that's because Early Intervention is already aware of her. She weighs 14 pounds 3 ounces and is 25.5 inches long. She's nearly doubled in length since her birth. (As Char put it, she wasn't very long to begin with so he hoped she would grow taller.) For her actual age of 9 months she's in the 1 percentile for both weight and length. The average 9 month old girl is between 18 - 21 pounds and is 27.5 inches long. 

For her adjusted age (how old she would be if she was born on her due date which is 6 months) she's in the 10th percentile. The average 6 month old weighs between 12.9 - 19 pounds and is 24 - 27 inches long. (Guess they vary more around 6 months then when they are 9 months old). So no matter how you slice it, she's still our tiny girl and may just be on the smaller side naturally. 
One strange thing is her head is in the 48th percentile for her head shape for her actual age. Which is why she can't sit up on her own very well yet, big heavy head, teeny tiny body. The original goal was to have her crawling by Christmas, but sitting up alone is a more realistic one. 
She had a lot of fun just playing with the tissue paper on the table. Rolling around, ripping it to tiny pieces. She wasn't happy with her 4 shots. Rory had to get a flu shot as well. He took it pretty good and got a squeaky toy as a reward, which he loved. 

Just a quick note on that little baby girl, she LOVES to suck on her thumb. She will play until she passes out on the floor with a thumb in her mouth. I've never had thumb sucker, this will be a tough habit to break. Heidi Anne loved binkies (we broke the habit around 1 years old) and Rory never became fond of a binkie nor his thumb. 

As we were entering the office a little 2 year old was leaving. This little boy was chattering so clearly with his mother. I forget that Rory is supposed to know at least 50 words about now. It's little things like running into a child just weeks older than Rory that screams "Something is off, find out what this is!"  

Oddly enough, I got a call this afternoon from one of the clinics we're thinking of having Rory tested at. They had a sudden opening for next Thursday, which was great, until they reminded me they were one of the self pay clinics. No insurance, of any sort, is accepted. The grand total would have been $1,000 up front! Yeah, I want to know what's happening with Rory, but we just don't have that kind of funding. Also, they don't offer additional services, the other clinics we're looking into offer various therapies and treatments, not just a diagnoses. 

I don't know why that's important to me to use a clinic that provides these services. If I think about it, if Rory needs something like ABA therapy, I'd like to use a facility that already knows him, or better yet, that he knows. I hope that, should he need additional therapies, we stay as consistent as possible. 

November 16-Another language and physical therapy day! It's been a busy week and it's only Wednesday. I can honestly say I feel frustrated with language therapy / Occupational therapy. But my friend Valerie reminded me it will just take time. It could be months before we see any real improvement, the important thing is we're giving Rory every opportunity that's available to him. That's the best we can do.  

He's starting to say the word "Go!" He babbles, babbles, shouts "GO!". It's like he's trying to say "Ready, Set, GO!" GO is followed by him throwing something, typically a car or a ball. 

Anastasia had a rough time with physical therapy today. She started out fine, but then the therapist accidentally touched the spot where Anastasia got her shots. Game over. Anastasia cried the rest of the session.  

November 16- I was looking up inspirational quotes about special needs (mostly focused on Rory) when things like prematurity (Anastasia) or ADHD (Heidi Anne) as special needs popped up. I guess I forgot those are special needs for a bit there. To me it's just been life, nothing special, but something we've had to fight daily. I don't really see them as special needs they way the world does, I just see it as my babies have different needs then your average child. If that makes sense. 
I guess the frustration from yesterday is still lingering. I thought once I wrote my feelings down they would go away or I would feel better. (Which normally works). But it's one month into language therapy and still he doesn't speak much. I found this one quote, unknown author, "Not being able to speak and not having anything to say, are two very different things." That's Rory, he is still so expressive or gets his point across without saying a word. You know he's thinking something, he just can't get it out right now. 

November 18- I keep looking at different special needs / autism quotes. I consistently run into ones reading things like, "Autism is Awesome". Autism isn't awesome, but it's not a death sentence either, it lies somewhere between the 2. 

Autism is a different world for every person (and family) it affects. Which is 1 in 68 children, that means at least 1 in 68 families deal with this. (Some families have multiple children with autism and each one has their own unique way of viewing the world). It just so happens Rory's number was called. 

With autism being so prominent you'd think there would be more awareness about it. But it was such a taboo subject for generations I think we're just barely getting over the stigmas associated with it. Even if (at this point that's a pretty big IF) Rory has something else, I know I won't look at Autism the same again. 

I can't wait to find out what's happening with Rory. What's taken away his words, what prevents him from speaking, or interacting normally in a consistent manner. He has his moments, but that's all they are, moments. Gone in a blink of an eye. Like today he was happily playing swords, complete with sound effects. It was amazing. Then suddenly he looked confused, he got the lost look in his eyes, stopped playing, dropping the "sword". That was our interaction for the day. What does that to a toddler? 

Friday, November 11, 2016

This is An Adventure - Not a Tragedy

October 26- Today we got the official report and what type of therapy he'll be getting for at least the next 4-6 months. 
He'll be getting "Language Therapy" which is different then speech therapy. According to the language therapist, a speech therapist fixes incorrect speech and patterns. A language therapist just teaches you the words. So speech therapy could still be in the cards. 
He'll also be receiving Occupational Therapy, to help with his fine motor skills.  

His goals for the next 6 months are:

  • To learn 10 new "functional" words. (Words like; up, cup, food. Words that serve a purpose in every day life. So 1.6 words per month.)
  • To learn the word and meaning of "No" without the angry tone.
  • To be able to drink sitting up
  • To be able to use a spoon and fork properly.

We also got his skills results back as well, it gave an age equivalent, too: 

Cognitive:      11 Months 
Adaptive:       12 Months
Gross Motor:  15 Months
Fine Motor:    14 Months
Social Skills:   13 Months
Personal Skills:  8 Months
Communication:5 Months

We called around and discovered that psychologist won't see Rory until he's age 2. That's when they no longer "grow out of it", before then I guess there's hope? They said call back in a few months to set up the appointment. Which bites because I want to know now what's going on. I also want to get him into ABA Therapy but they won't accept you until you have an official diagnosis. Now we're just in a holding pattern.

October 27-I'm sure the language therapist is going to want our input, I've been thinking a lot about what Rory's 10 words should be. How do you pick? Worst case scenario, these might be the only words he learns over the next 6 months. I know I want him to say Mommy or Momma again, but that's not a "functional" word.  These need to be words to help reduce frustration and help him navigate the world. Sadly, the word Mommy won't accomplish that. 

I know he needs words like; Up, Drink (or milk), Eat (or food), More. Maybe words of toys or book? Like I said I bet the language therapist has some ideas as well.  

I made the realization that Anastasia could pick up on these words as well, which is nice because she'd be able to communicate with us, but hard if she surpasses Rory. I just have to prepare myself for that potential. I always imagined he'd try to teach her words the way Heidi Anne does with him. 
I know I need to stop doing this to myself. That from now on, we're on a different adventure then we planned for him or our family. And that's okay. I remind myself how he is now is NOT how he will be in a few months to years. This is merely the start of the journey.  His story isn't a tragedy, it's an adventure. 
October 28- Tonight as I write this, little Anastasia Sonia Rose is serenading me with a lovely song. I don't know what she's singing but she's very dedicated to it. I had to get a picture of it. 

Funny story-(Background info - I don't eat beef or pork). Today we were eating breakfast for dinner. Heidi Anne loved the turkey sausage. She turned to me an said, "I like this sausage but I like original sausage more." Apparently, "original" sausage is the pork kind. 

I wasn't happy with my psychologist search on Wednesday. I only called 2 offices and today I figured that there had to be more doctors out there who could help us. I started from scratch with a list of 30 different clinics and began calling them 1 by 1.

I kept running into 1 of 3 problems;

1.  They didn't accept patients under 24 months (2 years old).
2. They didn't take our insurance / were solely self pay.
3. They were booked way out to Spring of 2017.

After nearly 20 phone calls I finally found a clinic in Layton that will see him (before he's 2) and has an opening before spring 2017, (the insurance thing is iffie) but I really like this clinic. 

The assessment will be broken into a series of 3 appointments, the first will be Nov 29th. It'll be a review of what's going on with Rory and to get him used to her. Next, in January he'll have an evaluation which consists of him playing, interacting with others, all the while someone watches his every move. Then 2 weeks later we get the results. I like this particular office because they will be looking into more options then just autism. So if it's not autism, they should give us a better idea of what we're dealing with and which direction to go in.

Blog, you may wonder why I want a diagnoses? I want to name what it is we're dealing with. Once we know what it is we can adjust our goals and get him the appropriate treatment(s). Like ABA Therapy, (I've heard it works wonders) unfortunately, you can only get it once you have an official diagnoses.  

October 29th-Today Rory was given some toys from our neighbors. (They are really great neighbors!) Anyways, they have twins, about a year to 18 months, older than Rory. Since their boys outgrew the toys they thought Rory might like them. He loves the toys. One of his favorites is the little xylophone. He also got a tunnel, he hasn't seen it yet. To be honest, I might save it as a Christmas present. He also received some cars, which he loves.

October 31-I did another post for Halloween alone. However, I took Rory trick-or-treating with us. I stayed away from the loud houses, and just sent Heidi up with his little bucket. He would make clicking sounds if he got over stimulated. He stayed in the stroller because he doesn't know how to hold my hand while we walk. 

Char thinks I should put together a list of things Rory will and won't eat. Also what some of his favorite things to do are. In case an emergency arises or someone wants to watch Rory for us. Which is a smart idea. I'll have to get on that. 

November 2 - Well, we had our first official language therapy appointment. I guess I was expecting the therapist to just repeat words while holding objects over and over again. Or for us to sit down and discuss what words to work on with him. Maybe I was hoping for the Helen Keller and the Miracle Worker moment of him realizing what water is, that there is a word for every object, person, and action.

I forgot she's also his occupational therapist. Oh, and that Helen Keller was around 7 -8 when she had her own Eureka moment and was once a frustrated 20 month old, too. 

Most of the time was spent trying to get him to play with two puzzles and stack a caterpillar puzzle. With lots of talking. Basically, working on his problem solving skills and fine motor skills. She encouraged us to continue using ASL with him. To repeat whatever babble sounds he makes when he makes it. Rory decided to do his humming, muffled voice talk that day. The therapist had never seen nor heard anything like that before and is going to check with her supervisor. (I told her in previous intakes he does it but I think she didn't believe me.)

Meanwhile, Anastasia is making huge progress with her torticollis and physical therapy!  Yeah!

November 4th-This morning Rory was having fun getting his picture taken. I had put the flash and a loud "click" sound on my phone to get a picture of Anastasia. 

He clapped his hands and giggled. Naturally, I kept doing it, over and over again. For nearly 30 minutes. This was some of his best pictures. 
When you find a connection with him, I don't know how long the interaction will last. So you keep doing it for as long as humanly possible or until he loses interest. (Which rarely happens first). 
Poor guy has an allergic reaction to something. It's all over his face. We think it's the banana shakes. Since he's such a selective (some may call it picky) eater, we give him Pedisure shakes to help give him more calories, vitamins, and minerals. He will literally go without eating versus eating what we do. Every meal I offer him what the family is having and then give him a favorite thing he'll eat afterwards. Once and a while he'll eat something (like rice or mashed potatoes). But more often then not, he just eats and plops it out of his mouth or he stores it in his cheeks, spiting it all out at the worst moment. 

I really need to work on that list of things he will and won't eat. But I've just been under the weather myself lately. If I'm not better by Sunday I'm going to the ER. 

November 5- So going to the ER tomorrow. I feel sick! I even took a nap once Char got up for the day. That only happens when I'm really out of it. 

November 6-Let me start off by saying I HATE Daylight Saving time switch. It's just throwing poor Rory and the other kiddos for a loop.

Went to the ER, where they determined I have a kidney inflammation. SO that's all sorts of fun-not. Nothing much got accomplished today. Now I'm going to curl up into a ball. 

November 7- Here is a list of things Rory will eat, it seems to have a lot to do with texture. Always offer what you're eating but don't be surprised if he spits it out. At least we're trying to introduce other foods even though it often results in spitting out food. Or in him storing it in his cheeks just to spill out on say the bed or carpet floor. You never know...
PS-He's allergic to bananas - those are a big No-No.

  • Oatmeal-Any flavor-BUT Banana
  • Applesauce-Any Flavor
  • Waffles
  • Pancakes
  • Chicken Nuggets-But NOT Regular Chicken-(He knows the difference-I have no clue how). 
  • Cheese Sandwiches
  • Mashed Potatoes
  • Goldfish Crackers-Meh, crackers in general. 
  • Breads-Bagels, rolls, tortilla shells, ect. 
  • Pastas - Just not stuff with Mariana sauce.
  • Pizza-Cheese Pizza with Light sauce. You know what just go with bread-sticks.  
  • Rice - White Rice, Rice Cereal, Rice Pilaf
  • Corn dogs / hot dogs
  • Pumpkin Pie (Go figure that one).
  • Cooked Apples (Apple pie filling).
  • Chocolate Soy Milk = Pure Bliss for Rory
  • PediSure Shakes - To boost his calories, vitamins, and minerals. He won't take the chew-able vitamins. Again-Bananas are a no go. 
  • Breakfast Cereals (Sometimes-it's a 50/50 hit or miss)
  • Yogurt-Sometimes-NOT Strawberry Banana ones!!
  • Cheese-Sometimes
  • Nothing that will get him "messy"
  • No real milk - It really upsets his little tummy. :( 
  • Ice Cream - In SMALL Amounts - Tummy problems
Still waiting to hear back from the second audiologist. I'm supposed to wait for them to call me to set an appointment, but it's taking to long. They were supposed to call me by Friday. I'm going calling them today. They have no sense of urgency, but this is my baby boy. If I don't fight for him, who will? 

I just got off the phone, Rory's appointment is set up for the 28th of November. Yeah! Last hearing test to complete!

November 8- Today Grandma came for a visit. She's been in Madagascar for the last 3-4 weeks. She travels the world a lot. Grandma started a tradition with Heidi of bringing back a little doll from each country. Typically, a rag doll representing the local culture. Heidi Anne adores her "Around the World Dolls". I think she has well over a dozen. Now Heidi Anne has a new doll (her's is the red "big sister"). Anastasia has her very first international doll (her's is the little yellow one).
 Well Grandma brought back a doll for every girl in the family. (Even me, mine's the blue "mommy" doll). 
She spent some time just talking and watching Rory. I think she needed to see for herself the change (or lack thereof) in little Rory. 

We went out to lunch to a local deli. Rory surprised us by sucking on a straw!! He didn't keep suction but he used a straw!! He was determined to get the 7 Up I got for him to drink. We might get some Sprite to try this new behavior at home. Sadly, I didn't get any pictures at the time.

After lunch Grandma watched the little ones so Char and I could vote. To be honest, I voted for the other guy, Gary Johnson. He didn't win. When we got back Grandma had to head back to her home. 

November 9- Today was language therapy day. Rory still wouldn't make a sound for her, just his muffled, humming noise. Neither she nor her supervisor have seen or heard a thing like it before. 

I honestly wish it was twice a week. Something more frequent. I just feel like he could benefit from more sessions per week if we're to hit our goal of 10 new words in 6 months. 
It seems like half the time is spent with him getting used to her being around him. We talk a lot to him, work on putting puzzle pieces together for his Occupational Therapy. Or playing with this game where you push down little bugs. (We got him a toy like it for Christmas). But before you know it, session is over for the week.

Anastasia is doing great with her physical therapy. She does baby push ups on her own, rolls from front to back and front again. We get her head measured next week to see how the helmet is working and get an estimate on how long she'll have to wear it. 
We also got her weighed. She is 13 pounds & 13 ounces. I'm still waiting to hear from her dietitian if that's good or if we need to be doing something more. I'm leaning towards that's not a good weight, she should most likely be heavier. I'm not sure what else to do, Anastasia eats 6 ounces every 3 hours, even at night. I still haven't slept through the night since she came home from the NICU. 

I just got off the phone with the dietitian, she says Anastasia made it to the 10th percentile for her gestational age! Which is good, it's the highest percentile she's reached. But the dietitian still wants to check up on her again in 2 weeks.  So we have another appointment for that. But she's doing better then I thought.

November 10-Finally starting to feel better!! Hallelujah! You do not know how sick I've been, I almost went back to the ER, again, but figured they wouldn't be able to help me. So I just had to let it run it's course. Which was so painful and super slow to recover. 
 The kids wanted their pictures taken. Well, I took pictures of Anastasia and Rory kept trying to get in the picture. He loves the flash on the phone. 
See, he loves the flash for some reason! Such a simple thing gives him such joy. How can you refuse guaranteed giggles?