Maggie AKA rapunzel

A Haircut is usually a simple, non-eventful activity. Nothing is uneventful or simple with autism. Maggie has had two haircuts in her life, both something out of a horror movie. SO... her hair is longggggggggggg. Something out of a movie long. And surprisingly minimal tangles. 'Tangled' - clever name for a movie :)

But hey, she's cute and she always lets me put it up in a messy bun or ponytail even braids. So Im not going to lose sleep over the issue.

The girl pulls it off!

Car Rides

Do you dread taking your child for rides in the car? Have you ever referred to your child as a 10lb terrorist? Well then do we have a lot in common! When I brought Mags home from the hospital as a baby, she cried but everyone knows that's what newborns do! However as time went by and with each excruciating road trip, changes had to be made. I would plan trips to the store while she was at therapy or have my parents watch her if I needed to run to the bank. Even short trips were miserable. Now I don't have any brilliant solutions but I can tell you, when she was finally big enough (20 months) to change car seats to a forward facing seat, life got better. I mean not drastically at first but gradually. Baby steps! And I am happy to say there is light at the end of the tunnel - this sweet child was happy the majority of the road trip from minneapolis to chicago! What more could a mom want?

Cookies

Vegan, gluten free cookie decorating? Why, yes! That sounds like a fabulous and fun idea... Of course after being creative and trying to figure out an activity Maggie could participate in, she had no interest. The adults though, had a highly enjoyable time! We made stars, trees and other nontraditional creations.

The creative process

Urlacher, defensive player for the Chicago Bears - Can you see the resemblance?

I hope everyone had a wonderful Holiday season. Happy New Year!

Hockey!

Being the Minnesota girls that we are... We love hockey! I don't know if it's the ice and cool breeze or if it's the names we can't pronounce or spell. Cute boys who can skate. The fights! Well duh it's the fights! It's all about full contact sports with Mags. She likes action. My Dad and Kelly were able to get us Chicago Blackhawks tickets (13th row near the goalie- sweet!)

The Wee fan excited for Hockey!

All decked out in proper attire including a smile.

And she was so happy during their warm up! She loved the straw in her drink, impromptu chewy - very clever little girl.

Hockey @ Madhouse on Madison

Everything was going well until... National anthem. Load noises, louder music, weird lights... It was all down hill from there.

She just couldn't take it. My little fan wanted to get out of there so fast it wasn't funny.

But watching the game from the bar inside the arena was perfect...

What did I take away from this experience? Well...

1. Nothing ever goes as planned - So What? That's life! I'm not going to stress or get mad over it but I think a babysitter will be arranged for next time.

2. Recognizing what the world is like through Mags perspective is complicated and I need to work on understanding it.

3. Maggie looks darn cute in a hockey jersey!

Overwhelmed!

So much has been going through my thoughts, days, & feelings. I keep thinking, really hoping, that life slows down a bit. But in the mean time reality slaps you in the face and it kinda hurts!

Heart, Teeth & Blood Work oh My!

The day finally came and went but it was a LONG day.

We arrived at the hospital (Maggie and I had not eaten in 12 hours or had any liquids) at 9 am and I though she would be under by 10 and out of surgery by 12.

Was I wrong!

She wasn't even put under until after 12, that's 3 hours we had to kill in a boring hospital room that, thank God, had a TV with PBS so she watched clifford and arthur. Then after getting bored with that I pulled out the iPad and she watched espn football for an hour.

The nurses were amazing and We are fortunate to have a fantastic children's hospital! However It was a long day... by 2 she was finally in surgery and I had to have something to drink so I found the cafeteria and of course it was closed. Awesome. But the guy cleaning took pity on me and he gave me a bottle of diet coke :) I went back to out room thinking it would take 1 -2 hours... more like 4 :( Only positive I could think of was that the TV had travel channel so I watched 4 episodes of No Reservations.
Waking up his time was much harder than previous experiences. She did not take to the multiple rounds of anesthesia well, on top of morphine and empty stomach it was not good.
Yes, she LOVES her vikings! Good news is were moving along with her Heart doctor, teeth are clean and she only had a couple cavities (which for as difficult it is cleaning her teeth, is fantastic!)

Pre-Op

Nurse: Magdalaina?

Me: Maggie, It's your turn. Let's go

Nurse: How are you today? (looking at maggie...)

Me: She's good but she doesn't care for doctors or nurses for that matter

Nurse: Ok, Can you stand on the scale? I need to get your weight

Maggie: (refusing to stand on scale without death grip on me...)

Myk: (tiny bruises and broken blood vessels become visible)

GOOD JOB!!! (after she finally holds still for 2 seconds)

Nurse: Can you stand nice and tall?

Maggie: (thinking to herself - I don't think so scooter!)

Nurse: Do you wanna try and get blood pressure? Or maybe will skip that...

Myk: ( thinking to myself - She learns quick!)

Nurse: Ok, Well Maggie your in the 46th percentile for height and 2nd percentile for weight...

Myk: (deep breath, I knew this but it's still hard hearing every time)

Nurse: Well Dr. Hoffman will be in with you shortly

Myk: Thank you

Dr: Hello! Are we exciting how cleaning teeth and looking at your heart?

Myk: I'm containing my excitement

Dr: Wonderful! paperwork and everything is ready for monday. No fluids and solid foods after 3am and clear liquids up till 9am. You've been through this before... I would recommend you bring some comfort items like a favorite stuffed animal. Does she have one?

Myk: Um... Yeah but he's as big as I am. How do I explain to security and the nursing team this enormous bear?

Dr: They won't mind! We can arrange for double room

Myk: LOL

Dr: Well think about what will make her comfortable...

Last time the nurse gave her apple juice and I stroked her hair as she woke up and she just looked cold and out of it! She was so unhappy! I was able to get her mostly dressed in pajamas and load her into the car, I took her home and she slept for hours. It's hard watching a child, especially yours go under - it's so fast one second she is crying and scarred the next lifeless looking. And then the doctors rush you out so they can work but I always look in just to see her. And then I have to pretend to keep myself busy as I don't panic or worry - yeah RIGHT!?! I'm always nervous and anxious each time. It's one of those things that does not get easier with repitition.

I tell myself, "they know what they are doing, your child is in excellent hands, this is necessary and for her benefit, just take a deep breath and relax myk"

I hope most parents never have to go through this procedures like I have, like Maggie has!