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?