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!

I may be crazy

Their is a slight possibility that I am crazy. I have registered for a full fall semester...

Yup

Including a Biology human genetics course with LAB...

Why?

I have this crazy idea that I will be able to work and care for my child and do something I love so that the whole aspect of money will still be challenging, I'm never going to be warren buffet but independent and making personal progress. Which... lead me to deciding that slowing finishing up school was not what I want to do. I want to finish yesterday! My impatience with not personally progressing has reached new levels so I am forcing myself to take control of what I am able to control and make it work!

How this is going to work you ask yourself? Not entirely sure yet

I know I have a block of time in which Maggie is at ABA and I can be in class as well as study.

That's my game plan lets see how well it goes after a few weeks :-) I finished up my summer class with an A, so I am positive moving forward!

Geneticist

Phone rings... Hello?

Good morning this is Dr. Mendelsohn's nurse and I am calling to inform you that their is now a simple blood test to determine conclusively that your child has Kabuki syndrome.

Okay... I guess then it is a good morning...

We will schedule an appointment, and we look forward to seeing you!

Well this was the conversation a few weeks ago and then this past week I pulled Maggie from ABA and we headed to Children's hospital to see her wonderful geneticist.

Why do I like this doctor so much? So glad your curious...

• I like that going with seeing us after a year or even 2 she remembers details about Maggie, and even myself.
• I like that she doesn't talk down to me or explain it to me with the assumption I'm an idiot - yes I have had several specialists do that
• I like that she is positive, in the sense that she understands the daily issues but focuses on the milestones and developments that have occurred!
• I like that she has a sense of humor, not all doctors do.
• I like that she gives me practical suggestions and not just a brochure or website to go to.

Overall it was a positive appointment. We were able to combine blood work with her upcoming dental work and heart echo (which are under anesthesia) - The one thing that was brought up and no surprise to me, it's not like I don't try!

Her weight!

She is just a skinny mini, doesn't eat a lot, can be picky, limited diet, very active and burns off everything she consumes... BUT we talked about healthy but fatty foods to add her diet. Most kids I know, parents have to start sneaking in vegetables or fruit and at a certain age start to control their intake so they are a healthy weight. But not my kiddo!

She is just too much of a supermodel - She needs to put some meat on her bones :)

1 step forward 5 steps back

Ever feel like your taking one step forward only to go back 5? Well then your not alone! I recently have been focusing on the little things so that I would have some sense of accomplishment at the end of the day, however usually I still feel like the world is agaisnt me and I need to work on my Karma or something! The saying "When it rains it pours" comes to mind. It can't just be one thing that goes wrong but a hundred things! why? Why? WHY?

I'll give you an example for those of you that would like to feel better about your life :)

(I can relate to those dinosaurs)

I managed to save up a years worth of mileage reimbursement forms to fax in - with the thought that I could have a bit of a financial nest for if/when something came up. I am not exaggerating after cashing the check - within a day, Maggie's Child support check basically vanished and my car died! Seriously?!?

So I'm broke again - but really that's nothing new :)

BUT have you ever noticed when money is non exsistent everything goes wrong and gets really expense?!? Why is that? All I know is that the past 2 months I have had to scrap by AND my car has died twice, a huge dental bill came and I haven't even received my dental bill yet! Oh OH it gets better - I spent hours and multiple days at school getting registered and filling out forms and trying to be on top of everything and today (13 days before semester starts) I was told I'm missing a form and have to start from scratch, because I was missing this form I was dropped and my award money was not sent out ... So I am hoping and praying that the classes I need are still available and trying not to panic or freak out...

I am not a happy girl

Mat Kearney & Owl City

I Love going to Concerts, especially when I have an awesome date like my brother Andy! He loves Owl City as much as I do and he loves his concerts all the lights and drum rifts its a fabulous time. Maggie got to stay home with the grandparents!

Mat Kearney was fabulous! I love his voice and his live style is very similar to Jason Mraz which means he interacts with the crowd and is a great performer. I love his song 'Undeniable'

Fun lights and great music - The whole experience of a concert is the best! I love when your heart is beating with the drum and you can real the vibrations coming up from the floor.

While he sang 'Fire and Rain' he came into the crowd and began to walk towards us. This is him as he approached me... he came up and hugged me and then did the side hug as he sang which I was singing with the crowd, he put the mic in front me and we sang together! It was fun and definitely a memorable concert moment. I am now an ever bigger fan of his.

And last and certainly not least - Adam Young AKA Owl City! Vibrant, colorful, musically awesome and a wonderful concert! Second time seeing him and won't be the last!

I loved the songs 'Angeles' and 'Lonely Lullaby'

And as always 'Fireflies' & 'Vanilla Twilight'

Can't wait till the next show.

As of Late

A typical day for Myk n Mags, I have to laugh a little to myself when I see the word typical... but you understand what I mean... Our schedule is pretty consistent.

6am - Myk wakes up showers and gets ready

6:30am - Maggie wakes up and gets ready

7:10am - breakfast in the car, drive to ABA

8am - Arrive at Autism Matters - Maggie works hard, learns new and interesting things!

I have classes, errands, meeting, paperwork, homework etc during the day until I finally drive back and

4pm - Maggie pick up and drive home in rush hour traffic

5-5:30pm - Arrive home, prepare dinner, bath, football or VeggieTales, books and play time

7pm - Maggie is requesting with signs to go to sleep and believe me, she's ready!

Somedays she looks like this... not so happy and in need of a snack

But most days she looks like this... 40 hours a week is a lot and she is one tired girl! but she's making such progress! New signs, better eye contact, more sounds, better behavior and all around wonderful progress :)

My sleeping angel face