Thursday, April 18, 2013

10 months x2

So the babies are actually 11 months old today- so I suppose that I should get this finished up before I forget!! yikes I'm behind!

I cannot believe that the babies have entered double digits. I can't believe that they are now older than Ellie ever was. This milestone was much harder than I even anticipated that it would be. The several rounds of fevers the kids had certainly didn't help at all. But we got through it, and the babies are double digits!

Weight: 18lb, 4oz.

Diaper Size: size 4

Clothing Size: 12 months

Nicknames: Buddy, Giant Baby, Mister

Feeding: Levi still takes about six bottles a day of Gentlease formula. He does a good job with his purees, and is finally doing better with solids. However, we are still very, very slow to introduce them as neither baby does a great job. He's had bits of kiwi, mango, banana (so not a favorite- he hates them!), carrot and avocado. Plus the puffs.

Sleep: Levi usually goes to sleep around 7:30pm and that's a stretch for him. I think he would be happier going to sleep a little earlier but that doesn't really work with our schedule- sorry buddy! He takes to naps a day, and they are usually pretty good. However, they started to get sick at the end of the month, and that really put a horrible wretch in the schedule. Sick babies are not sleeping babies!

Firsts: First Baby Shower- one neighbor threw a shower for another and the babies went with me to celebrate. Levi met his friend, Jason for the first time! Jason is the son of my good friend from college and we were soooo excited to finally meet him! St. Patrick's Day. We didn't do anything, and in all honesty, the kids didn't even wear their cute outfits until the next day- that's what happens when Mommy doesn't feel good I guess!

Skills/ Milestones: Getting up on his hands and knees- he is so close to crawling! He does this cute little army crawl/ scoot thing! Standing up at the couch without much help. Plays Patty-Cake. Improving on his self-feeding skills. Doing a great job waving and even does it without being prompted! Turning pages of a book. Got a tooth on the top- three total!

Words/ Noises: Ma-Ma, Da-Da, Ba-Ba, Ni-Ni

Life with Levi: Levi is observant and very focused. He is reserved at first but his little personality is really emerging. He is so silly! Once he decides that something or someone is ok, he will gladly share his smiles. He loves to cuddle and is so sweet with stuffed animals and dolls. Levi has finally started to fight back a little bit when Addy takes things away. He is becoming super interested in books and really likes to look at the faces of things. Levi is a pretty laid back baby but when he is tired, hungry or not feeling well, he is quick to cry- and it is a very pathetic cry. When he sticks his lip out, he looks just like his brother! I could just cuddle him all day long! And he'd probably let me too!

Weight: 16lbs

Diaper Size: Size 3

Clothes Size: nine months for most everything. But some shirts and dresses are 12mos.

Nicknames: Buggy, Bug, Buggers, Little Missy, Stink Face, Buglet

Eating: This child is going to blow away in the wind, if she doesn't start eating more! A somewhat nasty cold and ear infection really put a damper on her already finicky eating habits. Towards the end of the month, she was only eating 2-3 oz about six times a day. She only eats bites of her purees and bites of whatever solid we give her. She has eaten chunks of kiwi, carrots, apples, avocado, mango and banana. She does not like banana either! We can usually get her to eat puffs, but she has even been refusing these lately :(

Sleep: Addy went from sleeping almost all the way through the night for over a week, to having to be held ALL night long. Being sick really made it hard for her to get good sleep so we ended up with her in our arms for pretty much the whole night. I also think that not eating during the day made it hard for her to rest well at night. She is generally taking two naps a day, but with the illness she has been taking little cat naps on and off all day.

Firsts:  First Baby Shower- one neighbor threw a shower for another and the babies went with me to celebrate. Addy met her friend, Jason for the first time! Jason is the son of my good friend from college and we were soooo excited to finally meet him! St. Patrick's Day. We didn't do anything, and in all honesty, the kids didn't even wear their cute outfits until the next day- that's what happens when Mommy doesn't feel good I guess!

Skills/ Milestones: Addy is almost crawling. She is sooo close! Days away I would guess! Plays peek-a-boo with blankie and also does a pretty good Patty-cake. Standing up at the couch or holding onto our hand- she thinks she's so cool when she does this! Addy waves, has starting pointing, and is pretty good at feeding herself. Addy got a tooth on the top!

Words/ Noises: Ma-ma, Da-Da, Ba-Ba, MA-MA!!!, mo-mo (more), Hiiii, he-he. Ba-ba (which I think is for her bottle). "inky"- stinky. Ba (ball).

Life with Addy: This little stinker sure gives us a run for our money! (and I can say that because we did in-vitro and we did actually pay for our children!) She is so funny, mischievous and too adorable to get mad at. Addy craves attention and gets rather annoyed if she's not the center of attention. If people are laughing and she isn't directly involved in the situation- she laughs anyways. Even from across the room. Her stink face cracks me up and she knows even her "I'm annoyed with you" face is funny. We see her stink face quite often these days and I can only imagine what the teenage years are going to be like with this one! She likes to pick on play with her brother and when he isn't with her, she definitely notices. There is no way that he gets to do something or have something that she doesn't. Addy is good stuff, that's for sure!

Some pictures of our small people-

Friday, April 5, 2013

What I'm sick of...

So you're sick of hearing about autism huh?

Sick of hearing about how the government won't step in and help our kids. Sick of "autism awareness." Sick of hearing about this study, or that study. Sick of hearing "one in fifty."

Guess what?

I'm sick of it too.

Actually, I'm sick of a lot of things.

I'm sick of spending all week driving my four year old all over town Monday through Friday. And I'm sick of carting two ten month olds along to sit in every germ infested waiting room along the way.

I'm sick of scheduling appointments. I'm sick of specialists and I'm sick of paperwork. Every new doctor, therapist or specialist requires the same information but in a slightly different format. I'm tired of filling out hundreds (yes, at this point it's been hundreds) of forms that want me to detail exactly how delayed my child is. And I'm sick of arriving at the appointment only to discover that they haven't bothered to read any of the paperwork I spent hours filling out and want to instead rehash everything while my impatient and anxious child obsessively opens and closes the office door. I'm sick of loading three children in and out of the car four to six times a day.

I'm sick of being a stay at home mom that doesn't do anything with her children except for going to appointments. This isn't what I had in mind when I pictured staying at home with my children. I pictured music class, ECFE playtime, trips to the zoo and park. I didn't picture my oldest being so stressed out by music class, or new places that we are forced to stay home. I didn't picture raising my children in a waiting room with a bunch of strangers who ask too many questions and make too many judgmental faces. I never pictured autism in my life. I certainly didn't picture autism running my life...

I'm sick of spending my time online looking up new treatments, researching supplements and map questing clinics. I'm sick of finding out that the newest, best, most promising treatment isn't "covered" or not available in this area. I'm sick of hearing how autism is a "behavioral issue" or "mental health problem." It's not. It's a MEDICAL issue.

I'm sick of hearing about gluten-free, dairy-free, soy-free, dye-free, preservative-free, non-GMO, cage-free, grass fed food. I'm sick of hearing about toxins, plastics, chemicals, sulfates, formaldehyde. I'm sick of talking about vaccines, antibiotics, probiotics, cod liver oil, vitamins and inflammation markers. I'm sick of worrying that every. single. thing. my children come into contact with is further poisoning their bodies and setting them up for a lifetime of struggles.

I'm sick of the lack of support for families dealing with autism. When your child is diagnosed with autism, no one tells you what to do next. You get a pat on the back, and a "good luck with that" look before you're sent on your merry way. I'm sick of finding out we are on our own to help Max. I'm sick of there being no expert experts. I'm sick of pouring our time, money and energy into every treatment, all the while knowing that there are no promises. I just want someone to have the answers- all them, and the right ones.

I'm sick of hearing that "I just don't know how you do it!" Guess what- I don't either. I'm barely hanging on. I'm doing it at the expense of my friendships, my marriage, myself and at Levi and Addy's expense. I hardly have time for Ellie's Light. And to me, this means I don't have for Ellie. I'm sick of explaining that we can't do this or that, because we have appointments or because my child just can't handle something like that. I hate the panic attacks Max gets when I have to leave him. I'm sick of watching the neighbors sit and chat outside while their children happily play together. I'm sick of feeling like an outsider.

I'm sick of working my four year old like a dog. I'm sick of watching him struggle with life's easiest tasks. I hate that he is missing out on the simple joy of childhood friendships. I hate that he has been robbed of so much joy because his body is under attack from something we cannot identify. I'm sick of seeing his tears over things like new shoes, a simple change in routine or having to take off his socks. It kills me to watch life be so hard for him. I'm sick of waking up in the morning and wondering if it will be a day of cooperation, flexibility and focus, or one of meltdowns, rigidity or stress. I'm sick of watching my child function in a world all of his own- one that I don't always understand, and that I'm not always welcome in. It's heartbreaking.

I'm sick of our society choosing money over our children. Our government has the power and ability to drastically change the lives of our children. And they refuse. Instead, "we" allow big companies and their pocketbooks to control the way we grow and process our food, treat our livestock and manufacture toys. I'm sick of our kids- our one in fifty kids- not being acknowledged. I'm sick of everyone talking about what a problem autism is in our modern society- but NO ONE doing anything about it.

I'm sick of Holland. Screw Holland. If I wanted to go to Holland, I would have bought a damn ticket to Holland. I'm sick of people pressuring special needs parents to be all puppies, sunshine and rainbows. Yes, we love our children. I love Max more than anything. And we do find so much joy in him. Even if Max never makes any more progress towards "normal," we love him. But because I love him so much, I refuse to just accept. Max deserves more than that. All of our children deserve more than that. Because of that, we need to be honest. We don't need to be made to feel guilty about being stressed. We are not complainers. We don't always just have to accept that hand we've been given. We get to be mad. We need to let people know how hard it is and how pervasive autism is. I'm sick of empty platitudes. Don't tell me your sorry. Help us. Help us help our kids. Be sick of autism with us.

So yeah, I'm sorry your sick of our puzzle piece logos (don't even get me started on those!), and our blue lights. Do something about it. Because we're sick of it too.