Sunday, March 29, 2009

Walker, Evan Charles






It's just a few steps, but still. Age adjusted 13 months and can't use his left side very well? I think he's amazing! FYI, he's crying in the second clip because he wanted me, not Dad.

And here is a picture of Evan eating apple pieces: "Look, ma, I discovered gravity!"

I should also mention that Evan got right into the pool on Friday with a complete stranger- and loved it! Both Evan and Amelia are natural born swimmers and did not want to get out. Cousin Genna would be so proud. (My side of the family is full of divers and competitive swimmers. Grandma Kim was a synchronized swimmer!!) I can't wait to take them to swimming lessons and a waterpark someday.

Thursday, March 26, 2009

The Giant Patch

I took Evan to the pediatric cardiologist at Madigan Army Medical Center, just outside of Tacoma, today. His heart is checking out good, but there is still a small hole where the patch was placed. We hope that it will close as he gets bigger. For the first time, a cardiologist looked me straight in the eye and told me just how large the hole in his heart was. So large that he rarely sees babies with holes that large. What does that tell you? And then, of course, sad songs were playing all the way home.

In better news, Evan started therapy this week! Finally! An occupational therapist comes to our house once a week and we go to the therapy center once a week for physical therapy. We go there for PT because Evan gets to have his therapy in a warm pool! Evan, Amelia, the PT, and me are all getting in the pool. It should be interesting. His first session is tomorrow morning, so I'm sure I will have stories.

Both Evan and Amelia will be in a preschool class at the center once a week. It is funded by the school district to make sure premature and special needs toddlers are where they are supposed to be at developmentally. They get to play with neat sensory toys, learn to draw, push toys around, and have snack time with different cups and utensils. I think they are going to love it. So I guess my hectic, busy days are back...

Oh, and I almost forgot the reason I wanted to blog- Evan is 19 pounds! I just can't believe it. Four weeks ago he was 17 lbs, 14 ozs. I hope he keeps gaining like this. Amelia is still a peanut, but I think she's gotten taller. She's going to have longer legs than me in no time.

Monday, March 23, 2009

Thank God they play together now

The 1st video is a couple of weeks old now, but it is still relevant- they play together and haven't been so needy lately! I guess it's sad that they are growing up, but I just made me a sandwich! The only thing is that they like to take fairly big toys and try to balance them on larger toys, so I'm always listening for the crash of toys and screaming, but so far we, or they, have been lucky. They also occasionally fight over toys, but that goes without saying. Amelia likes to run in place in front of Evan and wave her arms in the air. Evan laughs hysterically at this. Evan can walk now, he just doesn't know it yet. The 2nd video is of him walking around the activity cube, one of the best toys ever- a hand-me-down from Auntie Tammy. Notice that it's on it's side. E & A like to roll it around together.



Wednesday, March 18, 2009

You can take that Crayola marker and...

So this past week Evan has been evaluated twice for his therapy needs. The first time was with a nurse, then the next was with education and occupational therapists. It was the same evaluation and the same questions. But twice. For a child who has needed therapy since the day he was born and all doctors say so. But you know, the state of Washington and the therapists need to see whether he really needs it.

Anyway, at both evaluations, the Crayola markers came out. Ya know, to see if the age-adjusted 13 month old, who has never seen or used a marker, can just start drawing with a marker. This leads into the next segment that I like to call "Seriously?!" by Jennifer. (Stolen from SNL's "Really?" with Seth and Amy.)


  • So you bring out an orange Crayola marker on my living room floor and expect Evan to just start drawing with it? On a piece of paper ON MY FLOOR? On the carpet? Did you not think that after I told you that he has never used one before that maybe he would start swinging his arm around, marking up everything within arms length? Seriously?!

  • So the next time you bring out an orange and a purple Crayola? And you just give him the capless purple marker? And you just let him immediately marker on his clothes and hands? Seriously?!

  • So you think that by showing him that you can draw, that he's going to start copying your lines? Did you really think that he wouldn't show you how he can draw lines, too? On his tongue?? Seriously?!

  • So you thought you would see if he's a genius artist, huh? Maybe sell his Crayolart for millions? I'm on to you! Seriously!

Seriously, though, the education evaluater is coming on Monday to evaluate Amelia so she can play in Evan's weekly playgroup. And I'm sure she is bringing markers. So now I'm freaking out because I never thought to give them crayons or markers and teach them how to draw. I have failed as a mother!! Now I have to go buy some washable markers this weekend and hold a Crayola workshop before she gets here.

1 Year ago...



It was one year ago today that Evan had his large VSD repair at Children's National Medical Center. Two days later I was able to hold him for the first time and my mom snapped a picture. The second picture is Evan now- what a big boy (from 5 to 18 lbs)! The surgeons and nurses kept telling me that after a couple of months he would be bigger than his sister. I couldn't believe it when it happened.

Looking back, I remember every little detail of that time. The days leading up to the surgery, the days while he was in recovery. The wires, the monitors, the beeping, the tubes. The ignoramus nurses. Feeling bad about not seeing Amelia much. It was so beautiful in DC. The cherry blossoms bloomed that week. I haven't been able to decide if cherry blossoms are a source of painful memories or something I can draw strength from. I think I'm going with the latter. I can't wait to take him for a walk around the tidal basin.

Tuesday, March 17, 2009

Happy St. Patrick's Day!

Since the kids have been taking bagpipe lessons for a few months, we thought we would let them march in the local parade. Then I thought, they deserve better. So we packed them up and flew them to Ireland last night so we could all enjoy the kelly green hills and the sound of their pipes. It was hard because it took 12 hours instead of 6 to fly there since we are on the west coast now. Oh well, it was worth it. Have a happy green day!


Monday, March 16, 2009

1st Time IN the Snow

Even though we had a lot- and I mean a lot- of snow in New England, we never took the kids outside in it because it was just too darn cold. But since it was almost 40 degrees and snowing (??) here, we decided it was time. They cried when we took them back inside. PS, love the snow here. Supposedly it rarely snows here and if it does, it melts immediately most of the time. Love the no shoveling part! All of it was gone an hour later.












Saturday, March 14, 2009

A trip to Point Defiance

Nothing like a beautiful day to make it all better! I took the kids to Tacoma to the area known as Point Defiance. I have a feeling we will be there a lot. Where I parked there was a duck pond, large grassy areas, and a rose garden. In total there are about 700 acres of the park, which include lookout points, walking paths, gardens, and beaches. I think there is a lookout to view the tides rushing in and out of the Tacoma Narrows and, as a geography geek, I'm quite excited to see that. Anyway, here are pics and a vid from our day.










Thursday, March 12, 2009

Living in the big PNW

The view from the back of my house. It is very hard to get a good pic because too much light gets in or something technical like that.




I thought I would talk about our new little town up here because most of my friends and family have never ventured to the Pacific NW. It is really beautiful, but not quite what I pictured. This is only because everyone who has been there has used words like "stunning" and phrases like "the most beautiful place I've ever been", or "it was better than "Cats"." Someone told my mother that this area was more beautiful than Hawaii. I thought, whoa, that must be some beautiful stuff up there.

Well, here is what I think about that. Yes, beautiful. Two mountain ranges can be seen to the east and west. Water is everywhere. It's just not turquoise water. And not lined with palm trees. And that's kinda my thing.

It has been an average of 50 degrees since we got here, which is great, but still a little too cool to go out for walks with the kids. It has also been sunny every day, even if only for just a bit. And the rain? Well, only at night and early morning. Anything you've heard about this area is a lie. But since I'm not in Seattle, maybe it really is different there?


When I go out with the kids, I usually drive around somewhere new every time while they are sleeping (gives me a break). Today I saw that "The Mountain" (Mt. Rainier) was out in all it's glory, but I could not find a good place to pull over and stare at it. So I only saw it from the highway. You can't imagine the size of this mountain until you see it with your own eyes. You turn a corner and all of a sudden, you're like, "Holy $h#t!" It literally fills up the whole sky.

Nearby is a Norwegian settlement town, Poulsbo, which we'll be spending a lot of time in. It's just up the road a few minutes. Since I'm part Norwegian, I think it's a pretty cool place. Here is a pic I took of them there the last time it was pretty warm. Taken in front of the Viking ship. This is the last day they were in their baby car seats (boohoo for me). Caption: "Aack! The sun again, Mom!" For some reason, I always have Evan's face in the sun.


Hating living in the big PNW

I thought I would let you read about the nice part of living here before telling you that, right now, I HATE it here. Capital I, HATE, IT, and HERE.

I'm having a bad day. I'm fighting over getting Evan an occupational therapist. Can you believe the nurse that evaluated him actually asked me why I thought he needed it? Can you?! Gee, I don't know, maybe because that he doesn't have even one fully functional arm? She thinks they can address any occupational needs in a group therapy play session. It doesn't sound like they have an individual occupational therapist available. So now his case manager at the Bremerton Naval Hospital is trying to track one down and so far has only found one "possibly", but still with an 8 week wait. She is waiting to hear from more places. All this and I'm probably going to have to fight Tricare, the military insurance, because the PT and OT will be at different places. Un-fricking-acceptable. I'm completely heartbroken right now.

On top of that, John is constantly in training. So much for moving here so he would have more time with the kids. When not under way, he will be working his ass off and training. I'm here all alone. I joined a moms group and the first get together is when Evan has to be evaluated by ANOTHER person from the therapy place (for his PT that will FINALLY start in a couple of weeks). Of all days. And to top off my bad day:

There is a "Hail and Farewell" Friday night for the officers of John's sub. Only 5 are leaving and arriving, and he is one of them. Since they are working until 8, they aren't rescheduling, just postponing until late. So now, even though I'm one of the "hailers", they aren't rescheduling and I don't get to go and meet other adults and have adult conversations. This is bullshit.

Thank you for listening to me, you've been great. I'll be fine, I'm just venting and it's 8 O' friggin clock and John's not home yet. The kids are happy in their jumparoo's, which makes me think- do they make them in adult size?

Tuesday, March 10, 2009

Cute stuff from today

I just had to post this cuteness from today. Amelia is finally fitting into her cute pants and watching her walking around in her puffy coat is too much. Someone told me she looks like a pink marshmallow. She loves to run from me when I call her name. First she just ran, then she would run as far away as possible and sit down, and now she pretends like she can't see me, too. She stares just to the right or left of me and won't make eye contact. What's next?

Their favorite activity is called "Mommy Attack", in which I get down on all fours and chase them while making monster noises. I'm not doing that in this video, but I had to share it because Evan ended up being so darn cute, standing up and hugging me. Warning: annoying mom voice in background.

Saturday, March 7, 2009

The Rehab Blues

Well, I wanted to take Evan to rehab,
They said it don't work that way,
Stay at home and we'll give you a call,
and I said, well that ain't Okay,

I'm singing the blues...
Yeah, I'm singing the rehab blues...

Said that they're working on it,
but I think they're taking a snooze,

Yeah, I'm singing the rehab blues...

How about this one, sung to the tune from "They try to make me go to rehab", by Amy Winehouse:

Try to take Evan to rehab,
They said No, No, No.
Even though it's been over 6 weeks,
They said No, No, No.
Well, I don't think that's kind,
But they just say he's fine,
Try to take Evan to rehab,
They said No, No, No.

I have had such a nightmare of a time time to get Evan's PT and OT started, I really don't even want to talk about it. So I decided to sing about it. Thanks for listening. Or imagining listening.

The short story is that Evan is still not getting the therapy he needs because there is a transition period to overcome. The program is a "0-3" program, which is better in the long run, but takes some paperwork to get it all started. And then a nurse has to come to our house to evaluate whether or not he needs separate PT and OT therapist. We've known since before he was born that he would and that is what his physicians referrals call for, but that is the way the program works. The money comes from the state, so what else can we expect? Once it gets going, it will be the best therapy. We hope.

Even our case manager says there is no quicker way. If this is the way it works in this area, we should have never moved here. Evan is in the Exceptional Family Members Program and can only move to places with adequate care. I personally don't think this is adequate care. How many other special needs military kids aren't getting continuous care because that's not the way the system works? I think it is time for a change and I have decided to do something about it. I just have to get my life organized a little first.

Anyway, in better news, Evan is attending a Limb Differences Clinic at Seattle Childrens Hospital in May. A Limb Difference Phsyiatrist (fizz-eye-uh-trist) and Occupational Therapist are going to get a therapy plan together that hopefully his therapists here can follow. My main concern and reason for going is that they will be able to talk to me about his shoulder. I don't believe any therapy for stretching his neck can be successful without addressing his shoulder. His former therapists have been concerned about it, but I have not been able to get a physician or specialist to talk to me about it. Therapists need to know what's going on so they can help! There may be some talk of creating a better shoulder plate for him down the road. We'll see. I can't wait!