Thursday, December 29, 2011

Christmas Highlights

I didn't take nearly enough pictures at Christmas. It's really unlike me, I usually always have my camera out, but this year was different. First of all, it didn't really feel like Christmas. Moving and then having my cat disappear then getting to Oregon totally unprepared made for a lot of stress. Things were I did take some pictures, so I'll share them as I highlight Christmas 2011.

1. My mom finally got a bed for us to sleep in when we come visit. For the last 3 years we've been sleeping on the futon mattress on the floor. We put it on the floor because somehow it's more comfortable than trying to sleep on the actual futon... it's weird, I know. So, it was really exciting to actually have our own bed!! However, the futon is still in the guest room (mostly because to get it through the doorway you'd have to take it apart), so that's where Sadie slept. She NEVER slept with us in our bed! What a big girl we have!

2. The second part of that is that Sadie gave up her pacifier. When she got sick, just before we left, she got some canker sores in her mouth and it made her not want the pacifier. So, I used that as an opportunity to let it go. I know that a lot of children with CP (or other neurological special needs) continue sucking on the pacifier, um, forever? I'm not really sure how long, but I know some 12 year olds who still need it. So, it's a big deal for Sadie to be able to sleep without it!

3. Usually, one of the first people I see when I get to Oregon (besides my mom) is my best friend, Anna. Often she will show up at my mom's house within hours of us arriving... with 3 little boys in tow. However, this year her family left to go up to Washington for Christmas before we even got there. I made a comment the second day we'd been there that it was weird to have been there for 2 days and not seen Anna. They were supposed to come home the day before we left, and she was considering even taking the train by herself and coming home earlier than that, but (fortunately?) they all got sick and came home early anyway!! I got to see her 3 different times (instead of just the day we were leaving), and her boys came over to mostly play with Brian. (I'm boring because all I do is sit and talk to Mommy!)

4. Another thing I always make sure I do when I'm home is to visit the Johnsons. The Johnsons are like extended family. When I was living in my mom's house because she was in Korea, and my dad lived here in Arizona, I spent every holiday with the Johnsons. Plus I spent at least one evening a week over there just hanging out. I love them and I consider them family, and they're always busy busy busy, but I force my way over there anyway!! We didn't get to enjoy our usual kind of visit where we come over for dinner and then they make me brownies and we sit and talk for hours and hours until it's almost midnight and we force ourselves out the door and back home. Instead we came over in the middle of the day. It wasn't a short visit, but it felt sort of like it. The best part, though, was that Joel rocked Sadie to sleep. He was holding her, she was fussy, he started rocking, eyes closed. Since we gave up the paci, sleeping without it is a new thing. We were amazed that this happened, and of course, he loved it!! It was so sweet to see.

5. Christmas morning was also different this year. Instead of my brother's family coming to my mom's house and us all eating brunch and opening presents, we went to their house! They also just moved... from Portland down to Eugene the first week of December. They found this cute little rental in South Eugene that has a studio for my brother to work and record, and a big beautiful back yard. It was a nice change, and I'm sure much more comfortable for them, having 2 small children to watch out for and keep an eye on! My sister-in-law made us quiche and cinnamon rolls and we pigged out and opened presents and laughed and played and had meltdowns and rocked and then went home!!

6. Another friend of mine, whose actually a friend from High School, but who lived in Phoenix for a while also was visiting her mom for Christmas. Tanis moved to Colorado last May and I haven't seen her since, so when we learned we'd be in Oregon at the same time, we made plans to get together. It was so good to see her! I really miss having her here.

7. Tanis and I made plans to meet at a restaurant, sans children (she has 2 little boys) while we were in Oregon together. But our little Mommy's night out turned into something way better. First of all, Brian and I got to go out without Sadie. We were able to leave her with my mom and enjoy a couple of hours to ourselves for the first time since we'd gotten there. But second of all, another High School friend, who I didn't even know was in town, happened to also be at the same restaurant! I hadn't seen him in probably 3 years, and never met his son (who is such a charming 3 year old!). We all had a great visit/dinner together, and after Sean and his family left, Tanis and Brian and I sat there another hour or so just catching up!

8.Every year at Christmas my mom plays in the Opera. She is a professional violin player and the Eugene Opera usually does a show on New Years Eve. This year they did Carmen. It's fun when she does this because we have the opportunity to attend the dress rehearsal, which I've been going to since I was little (I used to bring my homework and sit there while they rehearsed). It's just like the real performance (they stop once in a while, but not much), but it's less formal. And we can bring Sadie if we want. And it's free. Brian loves doing this, but it's hard with Sadie. And this year I was just so tired that I opted to stay home, and Brian went with my mom by himself (which was probably more enjoyable than having to bring Sadie). He really enjoyed it and I'm glad he got to go. And I really enjoyed my boring screamy night at home!

9. Sadie got her first pair of shoes for Christmas. When I was buying them, I couldn't help but think of this story someone sent me. It wasn't easy to find the perfect shoe. We needed a toddler size, but a baby bootie sole. We got the last pair. And they're pretty too. Having no idea what size Sadie wears, we brought them home not knowing if they'd fit. They're a little big, but that's okay. They keep her socks on, and they'll fit her for a few months. And I love them!

10. On our very last day in Eugene, my friend Andria came to visit and say hi. She brought with her Jennifer, who was the youth pastor's wife growing up, then became my piano teacher, and now is an adult friend. I haven't seen Jennifer since my baby shower. When Sadie was born, Jennifer wrote a song about the situation. About trusting God no matter the circumstances, and she brought it over and sang it for us the day we left to come home. It's beautiful, and true, and worshipful, and I'm really glad she shared it with us.

I hope everybody reading this also had a wonderful holiday, whichever one you celebrated!!

Saturday, December 24, 2011

12 Days of Special Needs Christmas...with new jammies

We're in Oregon for Christmas. It's been nice to be here and not in my crazy, unpacked house. I hoped this would be a vacation, and so far it is! We had a LONG, but good flight here, and then Sadie had a really good 2 hour car trip from the airport to Grammy's house. We're definitely thankful for that.

Today is Christmas Eve, and I'm really excited about our tradition we started 3 or 4 years ago. We don't have a lot of Christmas traditions (yet), but this is one that I started when we started thinking about having a family, because I thought it would be easy and fun and one that we can share in no matter where we are celebrating Christmas.

Jammie pants.

On Christmas Eve everyone gets to open one gift (see how this can be good for little kids?), a specific gift, one with special Christmas jammie pants (or full pajamas for kiddos). The first year was a little rocky, but it's turned into a fun game to find the silliest, yet comfortable, jammie pants for the other person. And now that we've been doing it for a few years, nobody questions it, it's just expected. So then the idea is that everyone sleeps in their new jammies so that on Christmas morning when you get up and open all your gifts, you'll be in your new jammies!

I love my little tradition that I started, and I'm excited to continue it for many many years. Make sure that when I post Christmas pics later (or on Facebook) you notice all our nice, new jammie pants!

And now I'll leave you with this... (I stole it from another spesh mom on Facebook)

♥ The Twelve Days of a Special Needs Christmas ♥

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

Monday, December 19, 2011

Learning our new Neighborhood

Sadie and I took our first walk today through our new neighborhood. Actually, it was our first walk with the new wheelchair! It was a beautiful December day in Phoenix, and we had a good time listening to the birds and greeting people we saw.

Before we even got to the end of our street, we were greeted by a woman walking her dogs who exclaimed that it was such beautiful day, wasn't it? I agreed, happy that she even said hi, let alone had a mini-conversation!! People weren't like that in our old neighborhood. As we walked, we saw another lady with her dogs, an older man jogging, and a family taking a bike ride. Everyone said hello.

Sadie enjoying the sunshine with the mountain in the background

I had no idea where we were going, and realized too late that I should have at least LOOKED at a map and made a plan. Instead, I trusted my instincts, and relied on what little I know about the area. At one point we were walking down a somewhat busy street (by busy I mean the speed limit was fast, not that there were a lot of cars) where there was no sidewalk. Luckily there was a bike lane and space between the bike lane and the curb (for parking?) where we safely walked. Then the sidewalk turned into gravel before it was paved, we really took that new wheelchair for a spin!!

Another thing I learned on our walk was that it's garbage day!! We did a lot of dodging trash cans that had been set out on the curb. Some were easy to dodge, some we had to go into the street to avoid. At one point, there was a man leaving his driveway, but apparently had forgotten to set out the garbage, so he stopped his car right on the sidewalk and hopped out. I was like, "seriously???" But then, to my surprise, he looked at us and realized we were coming, got back in his car, pulled it forward off of the sidewalk, then got back out to get his trash. I was so impressed!! Who does that? That was so nice!!

We finally found our way home and walked around our own block before coming upon our house (which I almost didn't recognize coming from the other direction! ha!). It is a nice neighborhood where we live. I think I'm really going to like it here.

PS. This evening I plan on doing some visiting. I made enough cookies to knock on 3 doors!!

Sunday, December 18, 2011

Sadie's first - Sensitive Santa

A few weeks ago, a Mighty Mom posted that there would be a "Sensitive Santa" in the valley for kids with special needs to come to a quieter environment to see Santa and get their picture taken. But the address was REALLY far from our house (no matter which one we were in)! Luckily, they had Saturday hours, and we were going to the dentist on Saturday, and Sensitive Santa happens to be very close to the dentist!


It was a really cool experience. There's no way Sadie could have handled Santa at the mall. Too much noise, too much waiting, and they wouldn't have been patient or had any idea about her special needs. But this Santa (and his elves) were awesome! Santa held Sadie and cuddled her, and they took 2 different pictures because the first one wasn't good enough. They were all so nice and we were the only ones there when we got there so we didn't even have to wait.

They told me they do Sensitive Santa every year... we just might have to make the drive!

Friday, December 16, 2011

Moving Day

We did it! We moved. I would have posted this sooner, but...

The day before we moved Brian was gone most of the day, and then the evening too. His mom has enlightened me that this may be a hereditary trait. Luckily, we don't plan on moving ever again. We were up way too late trying to finish last minute stuff, then we laid in bed and remembered our time in that house (when we should have been sleeping). We laughed about a lot of memories, and we came up with some more that probably should have made the top 10 list! (ie. the smoke alarm that had a short and would randomly go off in the middle of the night and scare us half to death!! And when we thought we lost Wilson, our kitty, who was gone for almost a week before he showed up at 4:00 one Sunday morning)

We got up really early Thursday morning in order to throw away put stuff in last minute boxes. By we, I mean I got up early and started building boxes in the master bathroom (in an effort not to wake up Sadie), so Brian had no choice but to get up. The movers arrived promptly at 8:20 and didn't waste any time. They had a ramp for our porch, a red carpet down on the tile, and our chairs and dinner table wrapped in plastic wrap and in the truck by 8:30. They were amazingly fast... and strong. And they took everything. EVERYTHING. 3 hours later their truck was full, our house (and back yard) was empty, and I was starving.

I was a little sad packing stuff up and thinking about no longer living in our house. Then I almost started crying waiting for the movers to arrive. But then as we got to our new home, and things started being unloaded from the truck and brought in. As we started seeing things like our bed and our couches in this new house, then I forgot about being sad, and I started getting excited. It's still a little surreal that we actually live in this house, it was such a far fetched dream, and now it's real.

My job was to start unpacking the kitchen while everybody worked on unloading the truck. It was sort of an intimidating job, especially when they kept bringing me box after box after box marked "kitchen." But I got food into the fridge, and I found enough stuff to make dinner later. And then they were done and I crashed. My feet hurt, my back hurt, I hadn't gotten enough sleep for like the last 2 weeks... I needed a nap.

So now we're here. We've spent one night in our new house. Sadie did well and slept in her bed pretty well. The cats did NOT do well and kept us up for a lot of the night. They are worried and stressed out and scared, but they'll get used to things and it'll be alright again. Luckily Barney is so trained that he won't go potty anywhere but the litter box, and Wilson is so nervous he probably won't go for a couple of days! We laid in bed last night and just listened. No cars screeching around the corner, or driving without a muffler at 2:00 in the morning. No gunshots. No tractor plowing the field behind our house at 11:00 at night. No sirens or dogs howling at the sirens. No helicopters. No traffic. Nothing. It was quiet, and peaceful, and so nice.

We're moved. It's incredible. And it's all ours!

Here's a video of the movers loading the piano. This was the climax. We knew once the piano was in, that was it... we were just about done!!

Wednesday, December 14, 2011

Top 10 memories of Tolleson (aka. the ghetto)

Today was the last full day spent in our house. Tomorrow morning the movers will come bright and early and help us take everything to our new house. I'm really excited about the new house, REALLY, but it's a little sad to leave this one. I really like this house. I've been in love with it since the first moment I ever walked in. It's too bad our neighborhood has turned into the ghetto. Just last night I woke up to gun shots! So sad.

So, in an effort NOT to be sad, I've been thinking about memories of living here for the last 4.5 years. I've come up with a top ten list. I will always smile when I think of these things, even though some of them are more annoyances than happy memories.

10. Emptying the pool every spring. In Phoenix the water is so hard, this is something you have to do yearly if you own a pool...there is no way to get rid of hard water, except to replace it.

9. Wasps. We've had a serious wasp/hornet/yellow jacket problem the last couple of years. At first they were just in the big bush outside. Then there were nests on the front porch, all around under the eaves, and in the barbeque. We think they liked being close to the water source...they were always in the pool. Won't miss them!

8. The dead bird birthday present. A few years ago, the day before my birthday, we had the back door open a little so the cats could come and go as they pleased. It was the evening and as we were eating dinner, we heard some kids screaming/playing. We just assumed that they were at the park across the street behind our house. Later, when I went to the bathroom, I found a BIG.DEAD.CROW!!! Later, we realized that the kids we heard screaming was probably that bird dying. And that my cats must really love me to want to get me something so special for my birthday.

7. Planting the garden. Our garden has sort of evolved into something with a life of its own. It's crazy and out of control (ie. haphazard). I'm excited to start a new one and do a little more "planning" this time! But this one has given us lots of good stuff to eat, and I'm glad we had the chance to "practice."

6. Patio Furniture. We spent a long time choosing the perfect patio furniture. We looked at a lot of different sets and when we finally decided on some, I was so excited when they were delivered. I still love them.

5. Skinny dipping. Anyone who has a pool and no kids does this. Don't be shocked. It's especially fun on those hot summer nights.

4. The Nelson Family. The Nelsons live across the street and we rely on them for emergency babysitting, forgotten ingredients, and friendly visits (or a place to escape a screaming child). We're going to really miss them.

3. Painting. Brian hates painting. So, when I want to paint the walls, I have to do it all myself, which is okay because I generally enjoy doing it (plus he just spends the whole time complaining and he's really bad at it). But we have REALLY high ceilings, and at the highest point they're probably 15 feet high. Really scary.

2. The car crash. We live against a street. We're 3 or 4 houses down from the corner of another street. This other street dead ends to the right, and to the left it is straight for almost a mile, and there are no houses on this street. The speed limit is 25, but mostly people rev it up and skid around our corner in order to gun it and go as fast as they can down this other street. It's annoying and it's dangerous. I'm always afraid someone is going to come skidding around the corner from the other street, lose control, crash through our fence and their car is going to end up in our pool. Well, it didn't exactly happen like that...

We are only 1 house away from the other corner, the corner you take to enter our street. One night there was apparently a car chase (did I mention we live in the ghetto?), the car being chased tried to take the corner onto our street, but was going to fast and instead crashed right through our neighbor's back yard. We stood on chairs in the middle of the night and watched the tow truck pull the car back over the steel bars and out of their yard. It was crazy. But I'm really glad it didn't happen in our yard!

I should also mention that when we first woke up to this "accident" that first we heard a crash, then gun shots. Apparently the guy who crashed through the fence, upon realizing that his car was stuck, got out and ran. That's when the car that was doing the chasing fired the gun. Super scary.

1. Our Homebirth. Sadie was born in this house. She was born back in our bedroom. I labored in our tub and in our bed. And that's where the paramedics came when Sadie wasn't breathing upon delivery. That's going to be a hard memory to leave. We may never have another homebirth because of the risk factors that I have acquired since Sadie's birth. You'd think it's a bad memory because of what happened, but I had a wonderful birth with all my best friends around me. I hope that this is a memory we can recreate in our new home.

I know we will make new memories in our new house. I don't know how people manage to move so often. I get emotionally attached to where I live, and it's hard to let go of all the things that have happened there. I hope we never have to move again.

Monday, December 12, 2011

The history of Sadie's name

Those of you who know me well, or have known me for a long time, know that I'm not a big fan of doing what everybody else does. I have always wanted to be different, even if it was just a little bit different. So, naturally, when it came to naming my baby, I didn't want a popular name. When she got to school I didn't want her to have to go by her first name and last initial, or last name, just to distinguish her from 2 or 3 other girls in the class. Therefore names like Sophie, Lily, or Emma were beautiful as they are.

Sadie was the perfect name (after many weeks of deliberation) because nobody would think it's odd or strange, nobody would spell it wrong (well, most people don't anyway), but probably nobody else in her class would be named Sadie either. It's like the name Simon. You don't think of Simon as an uncommon name... but how many people do you know personally with that name? Probably not many.

Also... when Brian and I were first married we talked (somewhat jokingly) about naming our children after Beatles songs. So, we were trying to decide between Jolie (Jo-Jo) or Sadie. Sexy Sadie was the winner, even though that song is weird and totally about the Maharishi. Still, it's a good name!

And for her middle name? Mae. Because it's my middle name. Because it was my great-grandma's name. Because it's a family name.

You can imagine my disappointment lately when I've realized that a lot of little girls born in 2010 and 2011 have the middle name Mae. It's like girls my age whose middle names are Lynne, or Ann.

But I stick by my little girl's name; Sadie Mae, because it's a good name. It's a pretty name, it somehow exudes royalty, while still maintaining some hill-billiness. And I love that her grandpa calls her Sadie-Mae (like it's all one name) the way my family members call me Christie-Mae.

It's tradition, and it's awesome...and it's still somewhat different, because a lot of people are spelling Mae with a Y (May). And I still love people's reactions when I tell them my daughter's name. I love the look of surprise and delight, and every once in a while, I can tell that they wish they had thought of that name for their daughter.

PS. Dear Prudence is a sweeter song, but...

Sunday, December 11, 2011

Heaven-what will it be like?

I've been thinking a lot about Heaven these past almost 2 years. More than I ever thought about Heaven before.

Growing up as a Christian and always being active in the church and youth group and Youth for Christ, of course I'd thought about Heaven. I mean, Heaven was a wonderful place you go after you die, where all the imperfections of Earth are made perfect. No more pain, no more death, no more suffering. Sounds wonderful, right? Sounds like a good incentive for believing in Christ, right? But, even though I understood Heaven, it wasn't in my heart like it is now.

My grandparents didn't die until I was in college, so growing up I wasn't all that familiar with death. Except for a friend I grew up with who killed himself in 10th grade, I hadn't really lost anyone that I loved, or even knew. I remember when Jeff died, going to his funeral with all my other classmates, I wasn't sad. I knew about Heaven, crying was selfish, it just meant that I was sad for myself because I would never see him again. But even that isn't truth if you believe in Heaven, if I believed that Jeff is in Heaven. Because, when I get there I'll see him again.

Death is a concept I've never really wrapped my head around. The idea that someone is gone forever is so strange to me. Like I said, I don't really have a lot of experience with death, so the idea of never seeing someone ever again is hard for me to really grasp. But it could also be that because I know about Heaven. I know that if that someone who died is also a believer, that I WILL see him/her again. It's like my earthly brain is wrestling with my Heavenly soul, and when I think about it all things start spinning.

Life isn't fair. It's because there is right and wrong. It's because there is a God and a Devil. It's because we have a choice to do the right thing or not. And I hate it. I've always struggled with the reality that life isn't fair. Someone once told me that I struggle so much with it because of my deep desire for Heaven. Because I have Christ in me and have been created for something better; Heaven. I long for fairness deep down somewhere in my soul, somewhere maybe I can't even identify.

And now that I have Sadie Heaven means more to me than just seeing my grandparents, or my uncle, or even Jeff, who died when we were in High School. To me, the idea of perfect bodies and an end to suffering means Sadie will be able to walk and talk and play like she wants to. It means that she won't be in pain because she has reflux or her tummy hurts or her brain can't process where she is in space. There will be no more rocking all day long. There will be no more wheelchairs. There will be no more screaming in the car.

So, I think about Heaven now. I think about it a lot. I long for Heaven like I never have before. And, even though I long for Heaven in my heart and in my soul, I know that there is still reason for me to be here on Earth. So, I continue to find my little pieces of Heaven, my little blessings, in my daily life.

Friday, December 9, 2011

Sadie's going to day care!!

Sadie's going to start attending day care. I know, weird.

I think Sadie needs more time around other children. She loves it when she hears kids playing or sees another child (even if that child is 6 or 7). And we don't really have a lot of opportunities to interact with other children. Some of that is my fault because I don't participate in mommy groups and things, but taking Sadie on a field trip to the children's museum can quickly become a disaster. Sometimes Sadie goes to childcare at the gym. She usually stays in the infant room, and all the babies crawl all over her and grab at her hair. She loves it. But they're not equipped for a special needs kid, so sometimes taking her there is more work than it's worth.

But we found special needs day care at United Cerebral Palsy (UCP).

I kind of had heard about UCP when Sadie was first diagnosed and things were being thrown at us from all directions, but she was so little then, and their services seemed like they were for bigger kids. And anyway, even if we knew about day care then, Sadie couldn't have gone. She needed me, and only I would do. All.Day.Long.

But now Sadie's bigger, and she still needs me, but not as much as when she was a baby. So, today we took a tour of the facility at UCP...which really meant going into the classroom and talking to the lead teacher. As soon as we walked through the door Sadie could hear kids playing outside on the playground and she got really happy! Everybody there was so nice. And they knew how to interact with Sadie and talk to her, they weren't afraid of her because she's different. And of course they told her how pretty she is...because it's true.

We saw the 1-year-olds room, and we got there just at the beginning of nap time. The lights were out and precious little ones were snuggled onto their cots with their blankies. They were so cute. Some weren't napping, just laying there. Some needed patting or rubbing, so there was a teacher helping to do that. And there was one who just wasn't interested in a nap at all, so he was playing quietly in the corner by himself. I told her Sadie doesn't nap, she said, "that's okay, we have other kids that don't nap, we'll help her with whatever she needs at that time." We agreed that some quiet time with the lights down did seem like a good idea, even if she never fell asleep.

The more I talked to the lead teacher and asked questions, the more I realized how wonderful this could be for Sadie. They have a lunch menu and the cook will put it in the blender and puree it for Sadie and they'll feed it to her by mouth!! But they'll also use her tube as necessary. This teacher, who couldn't have been a day over 24, wasn't phased by anything... I asked about meltdowns, she said they're used to it, these are toddlers, they can handle it. I asked about puke, she said they have strong stomachs and it doesn't bother them. I asked about rocking and bouncing and she said they don't really have anything, but that they have a lot of teachers and they'll give her the movement she needs. (I looked at her like she's crazy, she doesn't know) They even told me that as she gets settled, they can talk to the therapists in the other part of the building and see if they have equipment Sadie can use. And they encouraged me to invite her therapists to come visit her at day care and talk to her teachers about what else they can do to help.

We agreed that even though Sadie will probably be 2 when she starts coming, that we'd start her out in the 1-year-old room because it's a smaller group of kids and it's a little more calm. Good idea.

So, the ONLY downside is that it's REALLY far away from where we live now, and will be even farther from our new house. But, that's not really a bad thing because it's only about 15 minutes from where Sadie has physical therapy with Tami twice a week. I'm hoping we can run to UCP after therapy and then I can go somewhere with wifi and get a few hours of uninterrupted work done. Even though we'd have to drive 45 minutes (one way) for therapy, it makes it worth it if Sadie can go to "school" and make some friends and play with other kids.

I'm really excited about this! I can't wait to get this started! Sadie's getting to be a big kid and before you know it, I'll be writing about her first day of school.

Thursday, December 8, 2011

Sadie's first wheelchair

Today was a long-awaited day. At 1:00 this afternoon we headed down to the CRS Wheelchair Clinic at United Seating and Mobility to pick up Sadie's wheelchair.

It's fancy.

And it's pretty.

It's basically a giant stroller (with extensions and things to make it even gianter as Sadie grows), but it's got feet platforms, tie downs, a canopy, a strap around her belly for support, a pillow for her head, and it folds completely down like an umbrella stroller.

And Sadie wasn't impressed by it like I was!

The one bad thing is that it doesn't fit into my car. It's like an inch and a half too long to get into my trunk. So to get it home I had to move the front passenger seat forward and tilt it up and the wheelchair fit in the back seat next to Sadie.

We really need a van.

I have some ideas about altering my car and making it fit, but if I wasn't ghetto before, I'm now gonna be wheelchair accessible ghetto! It builds character!! haha. (PS. while I was writing this, Brian figured out a solution, I just needed to think outside the box)

The next thing we're working on is a wheelchair parking permit. Seriously, this thing is big, and it's going to take that extra parking spot room to get it all set up and Sadie out of the car and strapped into this thing! If going out with her was difficult, it's going to be really complicated too!

She warmed up to it a little bit later...sorta.

She doesn't seem to fit it comfortably yet. We'll spend some time tomorrow with Tami getting Sadie into it so that she's comfortable and supported well. Hopefully then I'll be more comfortable using it too!!

But it's fun to "drive" because it rides smoothly (unlike the stroller), and it's sturdy (unlike the stroller), and it's big (unlike the stroller). I'm excited to take Sadie on walks and I'm really looking forward to flying to Oregon with this instead of that rickety stroller.

Even though it'll take some getting used to, this is going to make our lives a lot easier.

Check out the video of the guy showing me how to fold it up!

Wednesday, December 7, 2011

What we need is a King sized bed!

This morning Sadie was an angel. She woke up happy (no sensory freakouts), she ate breakfast in her mouth (as opposed to in her tube), and we were off to therapy with Miss Tami. Sadie is a beautiful car rider these days and we listened to Christmas carols on the radio and I talked to Grandpa on the phone. We even stopped for gas before we got to therapy! No screaming.

I swear Sadie LOVES physical therapy. She always gets so happy when we walk into the trailer. I think that she knows that she's going to get to do things she likes (ie. sitting, standing, etc) even though she has to work hard to do them. Therapy went pretty well, she got in the stander and even though she liked it, her mouth hurt, so she yelled a lot. We tried to make her happy, but finally Tami said to her, "fine, do you just want to get out of the stander?" Sadie immediately got quiet, looked in Tami's direction and smiled really big.

This girl knows what she wants!

When we left, we had to run a couple of errands...which is always a lot of work and a little unpredictable. We went to the Apothecary shop to pick up Sadie's prescription. It didn't take long, Sadie smiled the whole time. It was like she was just happy to be doing stuff with Mama. Then we went to the post office, which took a little longer. Not a peep. Sadie was so good. No yelling, no whining, even getting in and out of the car multiple times went smoothly! She was amazing.

Then we got home and it all went down hill. There was whining and puking, which turned into yelling. Then we had a poop-splosion, which got EVERYWHERE... only to find that we had exactly 2 wipes in the whole house! (Mama had to be a very strategic wiper!) Then there was sort of a nap, which didn't last long. Then more puking and more yelling. Sadie's mouth hurts so bad and she is so uncomfortable that I am shocked that she was as good as long as she was this morning. But it's seriously like I have 2 different children.

Tonight will probably be like every night for the last week...sleeping between Mommy and Daddy. Each night we try to put her to sleep in her bed, and some nights it works. But we get to a point where we have to decide if we want to sleep with her in her really uncomfortable cheapo twin-size bed, or if we want her to sleep with us in our really nice, really comfortable tempurpedic bed. Last night we only had to go in there twice before we finally just brought her to bed with us at 1:00am.

If I knew it was going to be like this, I would have insisted on a King sized bed!!

Saturday, December 3, 2011

How Movement Therapy can help your child like it helped mine

Every once in a while I get an email from someone I don't know that found my blog and they have a kid like mine, or it really blessed them because they just had a baby who was on brain cooling, or sometimes they have a question. This one was sent to me last week and I thought it was a good question, so I asked if I could address it publicly.

Hi, my name is S and my daughter is A. I think that I have told you before that I love your blog! You little Sadie is just like my A. A is 15 months and had pretty much the same story, we were also told to prepare for our daughter not to make it. She has been very similar to Sadie through the months, it has been really neat to follow your blog because Sadie is a few months older than Abbey. I have a few questions if you don't mind. We just got our rifton activity chair. A has a tendency to posture when she gets excited (etiher mad or happy), her legs go out straight and cross and her arms go straight and her head goes back and turns, she will go in and out of this. So when I try to use the chair with her, she will do it for a little bit and then she starts pushing back with her head and feet. I noticed that Sadie looks so great recently sitting at her chairs. Her legs look so relaxed and she is not tipping from side to side. I was just wondering, was she like that when you first started using the chair or did it take a while for her to get used to it? Also, does Sadie take any meds for spasticity like Baclofen or anything. Maybe it is just the pics, but it seems like she is a lot less stiff than I have seen from younger pics. This is the news I'm hoping for :) Abbey is driving me crazy with this :) The other question I have is...does Sadie play independently at all, I find that I can't even lay A on the floor for a few minutes, or she has herself arched and extended with her head twisted and then she gets mad.
Thanks for any insight you have...have a great day!

First of all, I didn't know what a Rifton Activity Chair is, I had to look it up...SO COOL!! Check out this link (there's even a little video). I sort of wish Sadie had a chair like that, but at the same time, I don't know what we'd do with it. Sadie doesn't spend a lot of her day "doing activities"...this seems more like something for school-age children.

Anyway, I want to address "posturing." Lately, Sadie has been doing a LOT of turning her head to the side and arching. It's so annoying, I agree. I think she does it partly because her mouth hurts from those teethies coming through and she wants to push her face into the surface of something. However, I've realized that whenever she is sitting independently, and without a lot of support, she will also turn to the side... primarily the right side. It's like she's working so hard to balance that she reverts to basic brain function, which causes her head to go sideways. And I think that's what's going on with your little one, A.

Lots of arching and looking sideways when she was really little

She still does it some when in sitting position

Even when balanced, there is still that tendency to look sideways

Please keep in mind, I am not a doctor, I don't even have a lot of knowledge or experience in brain damage or development, so these are just my opinions. What I've noticed is that Sadie's brain, because of the damage, is very primal. Her skills and her reflexes and her abilities obviously aren't evolving like in a normal child as their brain grows. So, basic baby things that may only last a few weeks or months in a normal child, take a lot longer to fade in our children whose brains aren't as highly developed. Therefore, we continue to see the ATNR posture (fencing pose) and the side head-turning...which I believe is residual from the ATNR. Sadie doesn't do the ATNR anymore, but it just stopped probably 2 months ago. And when we stopped seeing her do that, this head turning when she's doing something really hard started. I think the frequency of this positioning is also increased by spasticity.

You asked about Baclofen. For those that don't know, Baclofen is a muscle relaxer that helps kiddos like Sadie and A relax their muscles and not be so tight all the time. It's often started as an oral medication, but as the dose increases, there are other options, like a pump that is inserted that continuously gives medicine straight into the spinal cord. It's really helpful for a lot of people. We were on Baclofen for a few months (this was the medicine we ODed on when we went to the Emergency Room), but were prompted to wean off of it after our movement therapy proved to be so successful. Now Sadie takes no medicine for spasticity.

Movement Therapy has been our answer, and the reason why Sadie looks so much more relaxed in recent pictures than in earlier ones. The therapy is technically called Anat Baniel Method, and it is changing our lives. The purpose of the therapy is to retrain the brain to unlearn these primal instincts and reflexes (like straightening/crossing arms and legs and arching and turning the head) and relearn how to use the body more effectively. And it really works. I truly believe that Sadie's good posture and ability to sit so beautifully is because of this therapy. When we've seen various doctors, they'll "measure" her spasticity and say things like, "her arms are really tight, but I don't understand because her hips are so loose!" I always say it's because of a special private therapy that we go to.

We've been seeing Michelle Turner since Sadie was about 8 months old. And at first we didn't see anything "life changing," but we did see change. Michelle encourages what she calls intensive sessions, where you do daily doubles for 4 or 5 days (so you get 8-10 therapy sessions in a short amount of time) and this intensive approach really wakes up the brain and reinforces these new pathways she's creating. After our first session Sadie could lay on the floor and turn her head from side to side. We had never seen her do that before. It doesn't sound huge, but if your child is always looking to the side and arching, giving freedom to that head is a big deal. After a couple more sessions, Sadie started kicking with both legs while laying on the floor (whereas before she would only kick one at a time, like she was trying to start a motorcycle!). After our session last summer, we hit a breakthrough. Sadie's hips released. All of the sudden it was possible for us to actually put the bottoms of her feet together and have her legs froggied out wide. And she's never tightened back up. We recently did a session in October, and after the third or fourth appointment, we came home and I laid Sadie on the floor and she brought her knees up so that her feet were flat on the floor. So, I mean these are little changes to most people...but HUGE for us.

The day after our first session in our last intensive with Michelle - Sadie's legs have never done that before without being propped.

Sadie does play independently. We have a toy bar that is made out of PVC pipe and her toys hang down above her while she lays under them. She bats at them and they rattle and make noise. Recently, she's starting very carefully and purposefully reaching and pulling the toy closer to her and trying to get it into her mouth. She is an amazing kid. But her brain has had a lot of help with this Movement Therapy. Even her therapists notice after we do an intensive session that Sadie has calmed down, she's more purposeful with her movements, and that her spasticity has decreased.

S, I don't know where you live, but I would encourage you to see if you can find someone from that ABM website who is trained in this therapy near you. If you are close to Phoenix, I would encourage you to get in touch with Michelle Turner and arrange for a trip out here. I know she has people come see her from all over the world. It is money out of your pocket, but you won't be sad you spent it (plus it's really nice out here this time of year!). Please let me know if I can help you, if I can get more information for you, or if you want some advice even for fundraising. I would love to see your little girl break these posturing habits (without Baclofen) and be more comfortable and able to enjoy her AWESOME seat!!

Monday, November 28, 2011

30 Days of Thanksgiving

As you can imagine, life has been pretty busy lately around the Beck household. We bought a house (which requires inspections and paperwork and notarizing and lots of emails back and forth with the realtor), which leads to lots of packing into boxes every one of our earthly possessions as we prepare to move it all. And we hosted Thanksgiving dinner at our house, which was a lot of work...but way easier than taking Sadie to someone else's house. Then there is just the daily stuff that we get caught up in - working, eating, taking care of our child - all of this, as you can imagine, leaves little time for blog posts. And before you know it, it's been 2 weeks and I've said NOTHING!

I started this 30 days of Thanksgiving challenge with good intentions, but probably unrealistic expectations. The goal was to post on Facebook everyday someone that I'm thankful for. I wanted to take it a step further and also write a blog post each day. I literally blinked, and the month was over. However, I DID keep up with my thanksgiving on here's the rest of my list!

14. I am thankful for my health. I posted this article about the way turkeys are raised for your Thanksgiving table. Our family recently became vegetarian, and considering the way our country mass produces meat, I believe we made the right decision. I am not trying to convince anyone to not eat meat...just be aware of what you're putting in your body!

15. I am thankful for my education. There was recently a story that hit the news about a teacher caught on tape (a kid was actually wired) bullying a special needs student. It was horrible. Unfortunately, in my profession, it's rarely that the GOOD teachers make the news. But I consider myself a good teacher, and I know a lot of other good teachers. So, I am thankful that even though I don't make the news for being good at what I do, that I have the education to do it.

16. I am thankful for my parents. My uncle died this month after a long battle with cancer. He fought hard. But it made me realize that my parents aren't young. I have a special relationship with both of my parents, in very different ways. I love them both so much and I can't imagine losing them. My heart hurts for my cousins, especially as they face the holiday season without their dad.

17. I am thankful for my baking/cooking skills. I made an awesome vegetarian Thanksgiving menu! It was a lot of work, but EVERYBODY loved it!

18. I am thankful that we have the Chillout Chair. Sometimes Sadie just needs to rock and rock and rock...and rock. I am glad we have something that can accommodate her (and keep her quiet!). Seriously, I don't know what we'd do if we didn't have this thing. I would go crazy from all the screaming and crying.

19. I am thankful for the Internet. Seriously, what an amazing invention, huh? I am able to keep in touch with people I wouldn't otherwise be in touch with through Facebook! I can watch TV shows and sports! And I can teach in a virtual classroom!! The internet is sooooo cool. And it just seems to be getting better all the time (as hard as that is to believe).

20. I am thankful for my brother. We are not only far apart in age, but we have very different personalities. Everybody likes Marcus, he's easy-going and funny (whereas I can tend to be bossy and uptight), growing up that drove me crazy. Now we're both adults and we both have little kiddos, and we're finally in a place in both our lives where we're equal. And we're still really different, but we get along much better. He is a rapper. He lives in Oregon and tours throughout the western US often. Every once in a while he comes through Phoenix and we get to visit. It was nice to have him over for dinner and catch up on his life.

21. I am thankful for 2-year-old tantrums. Okay, that sounds weird, but it's true. Anything that Sadie does that is somewhat normal we rejoice over. She is starting to really "know" what she wants and get mad if things don't go her way. It's annoying, sure. But, the fact that she is even aware enough to have her own opinions is so amazing.

22. I am thankful that Thanksgiving is about family, not about Turkey. When I posted my Thanksgiving menu on Facebook, I had a bunch of comments about how people can't imagine Thanksgiving without turkey and how it was so horrible that we wouldn't be experiencing the best thing about Thanksgiving. What.ever. I guess people don't realize A. you can cook a turkey anytime of the year, and B. Thanksgiving isn't about having turkey, it's about having family and being thankful for those in your life.

23. I am so thankful that our family loves Sadie so much. Sadie can be really high maintenance (I know, shocking) and sometimes I just look forward to my family coming over and loving on her. Seriously, I don't even mind that they walk in the door and barely say hi to me, but go straight over to doting on my child, because she loves the attention...and that's attention that I don't have to be giving her. Some people are intimidated by Sadie's special needs, so they kind of shy away, but not my family! If they don't know, they ask. If I need help, they want to know how they can help. If she's not happy, they are determined to do whatever they need to to make her happy...even rock and rock and rock and rock. And rock.

24. On Thanksgiving I was thankful for all my friends on Facebook. Seriously, I learn more from Facebook than I'd ever be able to find on the internet myself or read in the newspaper or listen to on NPR. Not to mention all the things I learn that are NOT in the news... like who is pregnant and who already has 5 kids and what funny thing your kid said today or where you're traveling on vacation this year?! Facebook is so awesome! Oh, and I posted this video as an example of all the cool stuff I experience through Facebook.

25. Usually on the day after Thanksgiving I spend the day getting out the Christmas tree (since we live in AZ, our Christmas tree is in a box) and decorating the house. This year, I started packing. I got out all my classroom teacher stuff and started purging. I mean, it's been almost 2 years since I've been in a classroom, and as you can imagine, the things I use for my job now are way different than when I was in a classroom! So, a lot of it I don't need. But there were also a lot of memories in that stuff, and I started realizing how lucky I was to start out teaching where I did. I worked with some good teachers who really taught me a lot, and I am so thankful for that experience.

26. You may not know, but I'm desperate for friends. Probably 60% of the reason I wanted to get a job was to have friends (I'm lucky I really like the people I work with!). It's hard when you're a mommy who stays home all day, especially when you're a special needs mommy. But I made a new friend recently, her name is Kristi. She has a special needs kiddo (who's totally different than Sadie) who's about a month older than Sadie and she came over to visit and hang out today. We didn't do anything special or especially fun, but it was good to see her. I am so thankful for new friends.

27. I am thankful for sleeping in Sunday mornings and family walks together. Recently we put Sadie on a very rigid schedule. She has a wake up time and she has a lights out time, and that means someone has to always get up at 6:50 with her. On weekdays it's not a big deal because I get up early and do work while the house is still peaceful, but on the weekends, sometimes I just want to sleep in. Sundays are the day that Brian gets up with her, and even if I don't sleep, it just feels nice to lay in bed and not have to get up. Then usually around 9:00, after we've eaten breakfast, and before football starts, we go for a walk together as a family. I love winter weather so we can do this. It's just a good time together...and Sadie loves being outside!

28. Today we signed papers on our house, and I am so thankful that it's over. No more stressing out that something is going to go wrong and we're going to lose the deal. And we had a to drive kind of far to the Title Company's office. Sadie did awesome in the car. She did awesome at the office. She was so good on the way home that we were actually able to run an extra errand! It was a good day.

29. I am thankful that I feel well. The night before, I had a really bad headache. I took some Tylenol with Codeine and I think that is the only reason I didn't throw up. But for the ENTIRE day today I felt drowsy. I wasn't tired, but I couldn't keep my eyes open! Either way, I was just glad the headache was gone.

30. The last day of thankfulness I am thankful for God's mercies, and that they're new every morning. Some days don't feel like they'll ever end. Some days are so hard that I want to wake up as somebody else. It's on these days that I can go to sleep knowing that tomorrow is a new day and God's mercies will be there waiting for me...and no matter how hard tomorrow is, there will still be another day.

So there are my 30 days of Thanksgiving. I hope you enjoyed reading them. I hope you found yourself giving thanks throughout the month of November. And I hope that even though Thanksgiving/November is over, we can all still find ourselves giving thanks on a regular basis and remembering that we have a lot to be thankful for in our lives.

Sunday, November 13, 2011

Thanksgiving Day 13

This morning I am thankful for the weather. As you can imagine, it doesn't rain very often here in Phoenix. But this morning I woke up to the sound of dripping and when I opened the blinds, it didn't really make it any lighter, and I smiled a big huge smile. I love this weather. It reminds me of home.

The University of Oregon didn't choose the ducks to be their mascot because it's a cute feathery's duck weather. And I am a duck at heart. I remember waiting for my ride before school in the morning sitting on the heater vent and eating my cereal. And sleeping with lots of heavy blankets on the bed. It's those mornings that you don't want to leave the comfy coziness of that bed. I love the cold weather. I love to wear sweaters and hats and coats. I love corduroy pants (for some reason I associate them with winter) and I love warm socks and shoes.

So why do I live in Arizona???

Because my husband doesn't love cold weather. All he did this morning was complain about how he didn't want to get out of bed, about how it was wet outside so we couldn't go for a walk (we did anyway), and about how much he missed summer. He's silly.

And I'd rather be hot and sweaty because it's 110 degrees outside than live with someone who just complains all the time.

Saturday, November 12, 2011

Thanksgiving Day 12

Yesterday I totally missed a Thanksgiving opportunity. It was Veteran's Day and I should have been thankful for all those who have fought and are still fighting for our country. But I was blinded by my own selfish good fortune.

The truth is, I don't have a lot of confidence or belief in our government. I think they are corrupt and beyond repair and they only dig themselves deeper and deeper into the pile of poo they are already buried in each time we elect a new President.

But that doesn't mean the soldiers who are serving at home and in various countries around the world aren't good people. They are doing what they feel is right and they are often doing it at the expense of their family, who are at home without them, or forced to move every few months to a new place.

So, I am thankful for all those who are serving in the military. I am thankful for their sacrifice and their dedication. I am thankful for their strength and willingness to sacrifice. I am also thankful for the families of those in active duty. These wives are are raising children mostly by themselves, packing up their children every few months and moving somewhere else, or even wondering if their husband is every going to come home...alive.

Thank you for all you do.

Friday, November 11, 2011

Thanksgiving Day 11

This week we signed the short sale acceptance papers for the house we want to buy. And I am so thankful that it's finally happening, because it seems like there are so many things that can go wrong when buying a house...especially when it's a short sale.

When we saw this house, it wasn't even on the market. We pushed our way into this house, not once, but twice. The tenant was confused and a little creeped out, and when Brian went without me she reluctantly let him video with his phone, but she didn't want us to take pictures when we came back. I've been in this house once, Brian's been there twice. That's it.

The reason this house wasn't on the market was because someone else had made an offer. But it wasn't moving very quickly, and the selling agent didn't seem very competent, so we didn't have a lot of hope. And Brian convinced me to throw all our apples into this one basket, and that scared me because I didn't have a lot of hope. Nobody did.

But all of the sudden the other offer fell through, our offer was accepted and things moved along quickly.

Now we have a close date of Nov 23.

And I am so thankful that we have been blessed with this house. It's big enough to grow into. It doesn't need a ton of repairs. And it has no pool (which Brian is really excited about). I'm mostly excited that there are enough rooms for me to have my own office/craft room.

Let me repeat that; my OWN office/craft room!

We will get to walk through again with the inspector on Monday, and I will get to take pictures. We have started thinking about furniture and packing and hiring movers. Hopefully now we can get moved in and settled so that we can start the new year with a new life in our dream home.

Thursday, November 10, 2011

Thanksgiving Day 10

I'm thankful for what Sadie has taught me about myself in the last 2 years...even before she was born. All my life I've wanted to be something I'm not...athletic, artistic, skinny, rich, organized, etc. and I've put various plans in place to become these things. But really, none of these things are me. Instead I'm high-strung, impetuous, physically weak, and messy. And I'm finally able to accept that.

I'm realizing that I have to be a mom now. And not just a mom, but a mom of a child with special needs. It's different than being a mom of a typical kid. Not better, not worse, just different.

Lately, I've been struggling with the fact that I don't get a day off. Ever. Sadie has to start her day at 7:00am, and there are no "weekends". Someone has to get her up and get her medicines and start her feeding schedule...and that's usually me. It doesn't matter if I'm cozy under my covers or need another hour of sleep. I don't get a day off. It's not about me anymore.

Someone has to take care of Sadie all day long too. She cannot feed herself. She cannot play by herself. I can't just turn on the TV and get an uninterrupted hour to do the dishes or fold the laundry. She doesn't nap (unless I'm holding her or laying down with her). And often she needs to be rocking in her chillout chair, which requires physical effort and attention. All of these things require me to split my attention from whatever else I'm doing. I don't get to just do whatever I want anymore.

I had been feeling sorry for myself. I started thinking this was too hard, that I was somehow cursed with this over-needy child. I felt like nobody else understood me or had ever gone through this, so nobody understands. Then I found a couple of different mommy-blog posts that just randomly showed up on facebook (God knows what we need to hear, right?) that were about the struggle that it is when you have kids and you go through this identity crisis as you transition from woman to mom.

WHAT??? This is normal???

Everybody goes through this identity crisis when they have kids, apparently. It's about leaving your old self (no matter how much you tried to improve that self all those years). It's about shedding that cocoon to become the beautiful butterfly that is called "mom." It's a time of rediscovery...and it can be painful. It's a struggle, but struggle makes you stronger, right?

All of these other things all of the sudden don't matter as much. I've left them behind with my chrysalis, and I've emerged even more beautiful than I was before. Still not athletic as I'd like to be, still not as artistic as I wish, still stressed out, still messy, but now I'm mom.

I'm Sadie's mom.

And that's who I want to be.

Wednesday, November 9, 2011

Thanksgiving Day 9

When we were in the NICU with Sadie, even though we had bigger things to worry about, how much all this was going to cost was constantly in the backs of our minds. I hated the idea of getting this huge bill from the hospital, but we didn't even get to keep our child! That just didn't seem fair. We were amazed when we got the bill and it was $150!! Insurance paid just about everything (and then the hospital adjusted accordingly)!

The next couple of months were like a lesson in insurance 101. Really, they should have someone come explain to you how all this works when you're in the hospital with your child. I mean, they have the chaplain come, the social worker come, the lady from hospice come...why not an insurance counselor? Anyway, I had to learn really quickly what an EOB (explanation of benefits) and what they mean (nothing). But I think the hardest thing for me was figuring out who was Sadie's primary insurance and who was secondary...apparently since Brian's birthday comes first in the year (even though I was born before him), he's primary. So confusing. Luckily, my mom worked in insurance for a lot of years, so she was a good resource!

But I got a lot of it figured out. I've learned what questions to ask, what to argue about, and what to just not pay.

Now Sadie has something called Long Term Care. This is basically a branch of our state assisted insurance program that covers everything our private insurance doesn't because they recognize that Sadie's condition is long term and that $30 copays add up over time and that she's going to need extra equipment! The greatest thing about Long Term Care though is that I no longer have to worry. I never get a bill, and if I do, I know I just need to make a phone call and I won't have to pay for it. Long Term Care pays for Sadie's feeding materials (ie. formula, tubes, buttons, syringes, bags for the pump, thickener, etc) and they send someone to our house with a delivery each month!! They paid for our chillout chair. And they provide the respite care we get.

Finally, Sadie was enrolled in something called Child Rehab Services (CRS). I really don't understand CRS. On one hand it seems like a net to catch families who don't know how to navigate the system or properly care for their child. But on the other hand it seems like another branch of state provided insurance/services that Sadie gets for free. We visited the wheelchair clinic through CRS, and even though the wheelchair (which is around $3000) has to be submitted to our private insurance for approval (and even then they'll only pay 80% probably), they didn't wait to order it because no matter what our private insurance will or will not pay, CRS will cover the rest. We WILL get a wheelchair and we WILL get it for free. So nice.

So, today I am thankful for insurance and that we have such amazing benefits both privately and through the state. I don't know what we'd do without it... anything relating to special needs always costs 3 times more than it needs to!!

Now if we could only find a way to speed up the process!!

Thanksgiving Day 8

I have the best job in the world. There are not many part time teaching jobs around. Usually they want you to be in the classroom all day, every day of the week. But I work at an online school, and we don't teach in a classroom. So, working part time just means I am given fewer classes/students as my responsibility.

Today I am thankful for my job. It allows me to stay home and be a mom, but I am still able to do what I love...teach. And working part time makes it even better because now I feel like I have time for Sadie's therapies and doctor appointments. My schedule is truly flexible.

I also work with a great group of people. Sometimes it's sad that we don't get to see each other everyday, but honestly, I think if we did we wouldn't get any work done!! Every other month, we get together for professional development. I look forward to these days (even though we sit in a meeting all day) because I get to be around adults, I get to laugh with my friends, and I get to see their smiling faces.

Many of the people I work with live on the other side of town, closer to where we are moving. I hope that after we move I'll be able to see them more. In fact, it might even be fun to all get together and work in the same room once in a while...but I'm not sure we'd actually get any work done.

Working in an online school is really a blessing and I am so lucky to have this job.

Monday, November 7, 2011

Thanksgiving Day 7

Sadie's been having a really really really hard time teething these past few days. I'm sad for her. We keep thinking since it's so bad, we must be nearing the end. I mean, it's been bad the entire time, but it's been especially bad these last few days. She's in so much pain and she just can't get any relief.

Yesterday afternoon she fell asleep while Brian was holding her. Usually naps like this last 3-17 minutes. This one lasted for more than 30 before Brian decided he had to go to the bathroom too badly to continue sitting there. So, we woke her up. That's not a bad thing. She needed a clean diaper and to eat dinner and stuff. But once her diaper was changed, we set her in her chillout chair and the next time I looked at her, she was back asleep!!!

You have to understand that my child doesn't just fall asleep when she's tired. She's never been that kid who will sleep in the car, or close her eyes in the stroller, there usually has to be active putting-her-to-sleep. Sometimes that's rocking in the chillout chair, sometimes that's holding her and giving her the pacifier (which you have to hold in her mouth because she has a weak suck), and sometimes it means laying down with her (and holding the paci in her mouth) in bed until she's out. She never just falls asleep.

The other thing is that her ears are so super-sonic that the smallest noise or motion will wake her up. If she falls asleep while you're holding her, a deep breath might wake her up, or moving your leg. In her room, if one of us lays down with her at night, getting out of the bed without waking her is the hardest part. But last night, she sat in that chair for 3 hours while we talked, turned on a football game, cooked dinner, ate dinner, and did the dishes...and we purposefully were NOT quiet about any of that. She hardly stirred. She was so tired that I carried her into her room and, had I not had to change her diaper, she wouldn't have even woken up.

But she was sure wide awake this morning at 3:00am. And her teeth hurt.

Today I'm thankful for her feeding tube. If we didn't have that thing, last night would have been screamy and sad. But with the tube, we were able to hook her up, give her some formula, give her some water, GIVE HER HER MEDICINES, all while she sat hunched over in her chillout chair, dead asleep. And today, with her mouth so painful, she wouldn't eat. I didn't even try, there was too much screaming and I was too tired. I just used the tube.

Sometimes it feels so sad that she gets a lot of her nutrition through a tube, but on days like today, and I'm sure there will be days in the future, I am glad we have it so she can not only get the sleep she needs, but she can get the food she needs...and she can grow up to be big and strong!!

Sunday, November 6, 2011

Thanksgiving Day 6

Today I'm thankful for where I live.

We usually go on vacation in the summer (because I'm a teacher) and whenever we meet strangers and tell them where we're from, it's inevitable that they say, "wow, how hot is it there now?" Sometimes it's kind of fun to shock them and tell them that it was 116 the day we left. But the conversation always comes back to that it's beautiful in the winter.

The weather is forecast to be in the 60s for the next few days. It's beautiful. And it's November.

Arizona has it's quirks. I mean, motorcycles with no helmets??? Sheriff Joe Arpaio and his tent city??? Immigration policy??? Every now and then I even see someone on a horse riding along side the street. This place really is the wild wild west.

But it's beautiful this time of year. And I'm thankful that I get to enjoy it.

Saturday, November 5, 2011

Thanksgiving Day 5

If you're like most mommies, you do everything...even if you have another full/part time job and also contribute to the household income. And if you're lucky, like I am, you have an amazing husband who helps out a lot.

I don't think Brian was planning to do this much work when I got pregnant and we started planning to have a baby. I'm not sure I was either. But things don't always go the way you expected, and in the NICU, Brian really stepped up. I was a wreck that week; I was physically tired from having a baby, I was emotionally tired from being told my baby is going to die, I was tired of crying, I was tired of imagining my future, I was discouraged, I was disappointed, and I was scared. But when I couldn't be out with Sadie because my body hurt and I had to lie down, Brian was with her. And when I wanted to give up, he held me strong and suggested I try this or just go one more day of that. And it's because of him that I have been strong enough these last 2 years to deal with this kind of lifestyle.

For the first 8 months of Sadie's life, I don't think I put her down. I held her all day, she nursed in my arms to nap, she slept with me at night, we were connected, and if I put her down (or in the car seat) there was screaming. She wanted to be held all.the.time. But I desperately needed a break. And that's when Daddy stepped in. Brian recognized that I needed a break, so every Saturday he started kicking me out of the house. I would run errands, go grocery shopping, sometimes just sit on the floor in the library (where it's quiet) and look at books, it didn't matter, it was a break. (I think one time I sat in the parking lot at the post office and just talked on the phone!)

In those days I couldn't be gone long because Sadie was nursing, and she would never take a bottle, so I could only leave for a couple of hours. But these days, I have more freedom to be gone longer. And even though Sadie is probably more work these days when I'm gone, Brian can handle it.

Everyday I write out a feeding schedule for Sadie according to what we're doing that day. Then I add up all the ounces and make sure she's getting enough liquid. I'm pretty obsessive about it. Then we have our specific routines, like in the mornings I get her up at 7:00 whether she's awake or not. You might think I'm crazy, but when she gets up early, she goes to sleep early. And I really need her to be up and "eating" for 12 hours in order to get enough liquid in her to keep her hydrated! She gets medicine @ 7:00 and her tube feed @ 7:30, then she watches Sesame Street and when it's over she eats food by mouth. Feeding Sadie by mouth is not easy. She doesn't swallow really well, she spits a lot of it out, she gags, and sometimes she sneezes and food goes EVERYWHERE. It can be very frustrating and Brian doesn't like to do it. Plus she doesn't know how to tell you when she's full, so if you try to get more in there than she can take, she'll throw it all up.

But today, I wanted to sleep in. And Brian recognized that I needed to, so he got up at 7:00 on his Saturday (mind you, on week days, he goes to bed at 10:00 and gets up at 7:30, he really likes to sleep) and got Sadie started. He gave her her medicines, gave her her morning tube feed, got Sesame Street started, and even made me some tea. When I got up, there was no stress, because Brian had it handled and stepped right in! It was a great way to start the day!

I am so thankful for Brian because when I need to be in two places at once (ie. making dinner for us and feeding Sadie by mouth) Brian is willing and able to step in and help me out. He is selfless. He understands that I am only one person. And he gets how exhausting it can be to take care of Sadie all day (because he's done it!) I am thankful that he loves Sadie and me enough to try to feed her and bathe her and put her to bed. He wants to give me breaks, and he wants to help out with Sadie (even if he hates changing diapers) and he wants us to be a parenting team. I'm still Mommy, and I still do most of it...but it's so nice to have a Daddy that I can rely on if/when I need to.