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 It's just a bit frustrating to see the transformation from interacting with me / the dog to a withdrawn little, baby boy.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?