Choices

We've recently started giving Sadie choices.  This isn't an easy thing to do, and requires some planning on our part.  So, we decided to start small.  We let her choose her jammies after bath and we let her choose her shirt to wear when she gets dressed in the morning.  And then we constantly tell her how pretty she looks and what a good decision she made!

I'm not even sure if Sadie understands that she's making a choice or even how to make choices, but we hold up 2 different things before her and even if she looks at one more than the other we clap and rejoice in her "big decision."  The hope is that this is a skill she'll learn if we continue to give her choices over and over again.

I think it's important for Sadie to make choices, especially when she's trapped in a body that she has such limited control over.  Everything is done FOR her or TO her, she doesn't have a lot of freedom or independence.  We decide when and what she eats (for the most part), we decide when to get in the tub and for how long.  We decide where she's going to sit and if she's going to watch Sesame Street or not.  I want her to feel somewhat like she has some independence over at least what she is going to wear.

Someday I hope that we can tell that she is making a conscious decision clearly by touching something or making a certain noise, or even saying yes or no.  As for now, we'll stick with clothes, and slowly move on to more complicated things, maybe even start using a choice board on the ipad.

What kinds of things do you do for your special needs (or typical) child to help them gain/learn independence?

My Summer Reading List

Things are changing at work.  And next year I'll probably be working with a new curriculum...which means there will be different novels to read.  The thing is, I'll only need to know these novels if I'm teaching 9th grade English, because the upper grades don't have a novel project (like they do with the current curriculum).  But since I don't know what I'll be teaching, I've gone through it and I'm preparing myself.

...with a summer reading list.

I love reading young adult fiction, and I love reading classics.  So, what better than to combine these two and read books that I may need to know for work anyway?  Sounds like the best of both worlds, huh?

But it gets better.

I don't even know where to start, I'm so excited about this!!

There is a new website I've just discovered called Goodreads.  It's sort of like Netflix meets Pinterest meets Facebook, but for books.  You can save lists of books you've read, books you want to read, you can rate them, you can categorize them (like I have saved my summer reading list), and you can see what your friends are reading.  Oh, and you can record the progress you're making in the current book you're reading and update your status on how it's going.  Now I don't have to keep track of the little piece of paper I wrote down my summer reading list on!!

We're lucky in Phoenix.  We have a great library.  There are 17 branches to choose from all around the city and the website is very user-friendly.  But the best feature they have is that if you find a book you want to read online in their database, you can put a hold on it.  When you do this, you choose which branch is closest to you and they send that book to your branch for you to come pick it up.  This saves one from having to drive all over the place to get the books you want.  It also keeps you from being limited by the selection available at your closest branch.  As long as you plan ahead, and you know exactly what book you want, this method works really well!

So, I've got my summer reading list saved on Goodreads, and I've got the first book on hold at the library (I just held it this morning, so hopefully it'll be ready for pick-up next week).  And if you want to join me in reading this summer, or you need something to read with/to your tween or teen...here's my list!

How the Garcia Girls lost their Accents
by Julia Alvarez

Red Sky at Morning
by Richard Bradford

The Brothers K
by David James Duncan

Secret Life of Bees
by Sue Monk Kidd

The Bluest Eye
by Toni Morrison

Slam
by Walter Dean Myers

A Tree Grows in Brooklyn
by Betty Smith

Joy Luck Club
by Amy Tan

The Night Thoreau Spent in Jail
by Jerome Lawrence and Robert E. Lee

Have a great summer!!

Blogging is cool

I grew up in a family where reading and writing were valued.  My grandfather was a PhD and the head librarian at the University of Oregon (yes, my blood runs green and yellow).  He was always reading at least 2 books in English, and then probably another in a foreign language.  I can still see him sitting in his chair with the lamp shining over his shoulder and a book in his hand. When he died and my mom and aunt and uncle split up his belongings, it was a wonder at how many books each person got!

This makes me not in the least bit surprised that in addition to my blog, I have 2 cousins who also regularly blog...and are good writers!

What would my Grandfather think of this new digital age where anybody can be "published" just by giving a small amount of personal information to sign up for a Blogger account and then pushing that big orange button at the top of the page?  I think he'd be overwhelmed.  I think he'd be fascinated.  And I think he'd be proud of us that we love to read and love to write and are sharing our lives and our thoughts with the world.

So blog on Barnes family!!

www.barnesbrennan.blogspot.com

www.onerealisticmom.blogspot.com

A Celebration of a Little Boy's Life

I've spent all day thinking about this post and forming my words carefully.  I do not want to make light of the situation or bring any disrespect to this family.  What they have gone through is unimaginable and most of us wouldn't even know where to start if we were in their shoes.  Yet they've handled it with grace from the beginning to the end.

This morning Sadie and I attended a funeral for a little boy named Broxton.  Broxton was a month older than Sadie.  He had been dealing with a genetic terminal condition for about a year.  There were probably over 200 people at this little boy's funeral.  And I decided today that if I am ever in this situation, I want to handle with the grace and love that Broxton's family did.

I don't have a lot of experience with funerals.  I went to one in 9th grade after a classmate of mine committed suicide, and I've been to all my grandparents' funerals (which were all cremations and there was never a casket or a cemetary burial or anything), but that's it.  I was nervous about going.  I wasn't sure what to wear, if I was supposed to bring anything, or if it was okay to take Sadie with me.  I didn't know what to expect, I wasn't quite sure how to act, and when I got there I was a little embarrassed that the tears started in the parking lot!

When the time came that guests were invited to say something, I went up to the mic.  I had this beautiful, but short speech planned in my head...but when I got up there I don't even remember what I said, but I know it wasn't what I had planned.  People probably thought I sounded like a blubbering idiot.  I am much better with the written word than the spoken.  So, I'm going to try again.  Here's what I meant to say...

I haven't known Kristi (Broxton's mom) that long.  But I didn't have to know her long to love her.  I didn't have to know her long to see how strong she is and how much she loves her family and how much they love her back.  We met because I also have a child with special needs, and although our situations are different, there was comaraderie found in the fact that we both have to be strong, we both have to overcome, and we both have to learn how to rely on help.  I can't imagine going through the heartbreak that Kristi and her family are going through right now, but I do know that when I'm having a hard day, I can somehow draw on her strength and get through it.  I am so happy that Broxton is in Heaven jumping and dancing and playing like the little boy he was always meant to be and I can't wait to see him again someday in his perfect body.  I look forward to having Kristi in my life for a long time.

I'm pretty sure that is WAY better than what I actually said!

Something I realized throughout this event was how beautiful it was.  It was planned and put together as a wedding would have been.  The family was honored and followed the coffin in a processional down the center aisle.  We all stood as they carried Broxton's little body through the sanctuary.  People knew what to do, where to stand, and who to look at.  It was like it was expertly choreographed.  Only, the difference between this and a wedding is that this is NOT the kind of show you want to be the star of.

I watched Broxton's parents and close family shaking in sobs as they walked behind his coffin.  I saw big, huge men crying their eyes out unabandoned, while all eyes were on them.  I saw Kristi as the center of attention at an event that she would give anything to not even be a part of.  The grieving mother of a little boy, too young to die, knowing that after they lowered that tiny coffin into the ground she would never see his face again, never touch his skin, never run his fingers through his hair.  And yet, her strength prevailed.  She held her head high, her hair was perfect, her clothes beautiful, and her face stained with tears as she experienced her worst nightmare.  And even though that room was full of people who would give their lives to spare her this pain, nobody longed to be in her shoes.

But you know who really touched my heart?  It wasn't Kristi, or her husband, it was their 4-year-old, Brody.  I don't think he was too young to know what was going on.  I don't think he misunderstood what this was about.  But when I saw those men sobbing and carrying that coffin out to the hearse, it was Brody, with his hand on that coffin who stood the tallest.  I even heard that he didn't let go of it until it was all the way in the car.  Up until the very very end, Broxton's big brother kept watch and made sure Broxton got where he was going safely.

When two people fall in love and get married and have children, they have on rose-colored glasses.  All they see are rainbows and unicorns in their future.  They don't ever imagine their child will have a life-long disability, or a terminal disease, or a genetic abnormality.  A special needs child is a true test of that relationship.  Some couples come out standing taller, and some don't make it.  There's no way to prepare, but I am happy to see that not only has Broxton's life drawn his parents closer together, it has brought together all the extended family, and touched an entire community.

And all this because two people fell in love.

Bump Watch - 16 Weeks

It's amazing that I am growing a tiny human being in my stomach.  And it's even more amazing that God already knows and ordained this little life.  I know that pregnancy is uncomfortable and sometimes painful, but I feel so privileged to have the opportunity to even experience this.  I am housing the creation of life!!  And all these little nuisances (like tiredness, nausea, skin stretching, and labor) are totally worth it!!

On to the Bumpdate!!

How far along?  16 weeks!  Getting up at 7:00 isn't so hard anymore, and I'm starting to want to do "projects"... even though I don't.  

Weight Gain? Okay, so I weighed myself this week.  I'm 18 pounds in.  I guess that's okay, right?

What's up with my Body?  Still itchy.  The dry, hot weather isn't helping that.  And the fact that Sadie and I are going swimming weekly (sometimes twice weekly) also isn't helping.  I think it's time to convince someone that "the baby" needs me to get lotion back rubs every night!

Heartburn heartburn heartburn!!!  With Sadie I had a little bit of heartburn, but I quickly figured out that peanuts were the culprit and I stopped eating them...and it was gone.  Seems like this baby is determined to burn out my throat!!  I have NO IDEA how people deal with this on a regular basis.  It is the most unpleasant and uncomfortable thing ever...it makes me not want to eat!

I'm having a lot of stretching and cramping throughout the day, I guess this means baby is growing!  I read that baby is going to double in size in the next couple of weeks...so I guess I should be expecting more of this!  

And it's getting harder everyday to bend over and pick something up!  Time to start sqatting!

Food Cravings?  I still want potato chips.  And popsicles.  Still.

Movement? Still waiting for that moment when I am SURE it's baby and that it starts happening more and more frequently.

Gender? My dreams are evolving into having a girl dreams.  I don't know if this is because I want a girl, or because it is a girl.  We'll know for sure in just a couple more weeks!

What I'm looking forward to:  I signed up to volunteer at the Just Between Friends sale in Scottsdale in a couple of weeks.  It's like a GIANT garage sale of just baby and kid stuff.  By volunteering I get to shop the deals early!!  The only bad part is that the sale is before I find out the sex...oh well, I can buys stuff for Sadie!!

Best moment of the week:  Showering with Sadie.  I sit her in her Bumbo and she loves to be sprayed with the shower head!!  She's such a big girl!

Worst moment of the week: Sadie got sick on Tuesday.  It was so sad, she threw up everywhere in the pool during Physical Therapy.  She just sat all day totally lethargic, hooked up to the pump with pedialyte.  She's better now though...I don't know if it was teething related, or if she had a bug, but she was so sad.

How baby's growing: Baby B is the size of an avocado this week.  He/she is also starting to look more like a human...eyes in front of head, ears on sides, arms and legs long, and head erect.  He/she is growing toenails and his/her heart is pumping 25 quarts of blood each day!!!

I have a silly look on my face, but it's a good pic of my belly!

Ball pit!

Last Friday Sadie and I went to Foundation for Blind Children's infant program/Parent class.  We hadn't been in probably over a year so it was really fun to see some of the same people and how they'd grown and for the parents and staff to see how far Sadie has come.

I wasn't quite sure how long it would take us to get there, so I left probably too early (just to be safe) and we were like the first ones there... so I sat and played with Sadie for a few minutes before I joined the parent meeting.  But I noticed they had a ball pit.  It was basically an inflatable swimming pool just filled with balls like you'd find at McDonald's or somewhere.

Sadie has never been in a ball pit before, so I took her over there and plopped her in (I'm not cautious or shy about trying new things! haha).  She thought it was great!  We piled the balls on top of her as she sunk down (it wasn't that deep, it's not like she would have gotten lost in there) and then we unburied her.  She smiled the whole time.  Then just as she got comfortable, I would grab one arm and yank and move her or flip her and at first she was a little freaked out by it (because it doesn't feel like the floor), but then she liked it!

I came home that day and decided we needed a ball pit at our house.

I have this dream of turning my office into a playroom/sensory room.  It's in the front of the house right off the living room and there's no door...it's more like a den.  But it's the perfect room for playing because everything can be contained, it's carpeted, and I can baby-gate it so that it's safe.  So, my summer project is to clear out my sewing/office-school stuff and paint and start converting this room into a super fun place to play and hang out.  (The idea is that it'll eventually turn into a teen hangout/homework room where kids can watch movies and play video games and have slumber parties)

Sadie's table is going to go in there, and I got some musical instruments to play with.  We want to build some kind of light wall (we're not really sure what this is going to look like yet) and replicate the bubble pole from Ryan House (because Sadie LOVES that thing!).  And now we have a ball pit to go in there too!

Anyway, I started looking online this weekend for balls.  I had no idea how much they'd cost or if I could afford them now.  I kind of had an idea of saving up for them, then buying a baby pool at the end of the summer when that kind of stuff went on clearance.  But on Craigslist, there was an ad for 500 balls for $20!!!  New on Amazon they were somewhere between $70-$100!  So, I called.  He told me they were kind of damaged and that's why they're $20, I told him I'd come look at them.

Turns out he's some kind of warehouse distributor (chances are, if I'd bought from Amazon, it'd have come from him anyway! ha!), so he took me back and showed me the $20 balls.  He said they've never been used, they've just been sitting in the warehouse for a long time, so they're a little bit deflated.  He told me that after about a year, the balls lose some of their air and get like this.  So, he gave me a choice...he said, "you can buy 500 brand new balls for $70 and they'll be like this in a year.  Or you can buy these for $20."  I told him I'd take them.  Then he sold me the pool too for another $20.  I looked at Target and that same pool was $35.

We got the whole ball pit for $40!!!

It's bigger than I thought it'd be, but it's good.  It'll definitely fit more than one toddler-size person in there.  We are going to have an awesome playroom in our house!!  I'll post pictures as we transition the room...it's my summer project.

Any other ideas for what we could do in that room?  What kinds of things do your kids like to play with at therapy or different places they visit?  What kinds of things have you made for your kids to play with at your house?

Update:  More pictures!!!

Where's Sadie???  (it's kind of like Where's Waldo or those creepy family pictures that get posted on Facebook)

That is Grandpa's finger showing you where Sadie is, just in case you couldn't find her! haha

Sadie "playing" in her ball pit!!

The Giant Bumbo

Every parent these days knows about the Bumbo...that foam seat that supports your tiny kiddo when they're learning to sit?  Yeah, it's genius.  It's waterproof, wipeable, portable, and only $30.  (Unless you find one on Craigslist for $10 like I did!)  And most parents don't use it for long before their kid can sit independently or grows out of it...but not us.

I like the Bumbo because it holds Sadie's butt and doesn't allow her to arch.  It is also sort of deep, so she is forced to sit on her "sit bones" and not on her sacrum.  But the problem is that it's made for babies, and Sadie's 2, so the back isn't high enough to support her.  This causes her to either be in taco mood (kissing her knees) or be in back bend mode (staring at the ceiling).  She isn't strong enough to hold that much of her body up straight like she needs to to sit well.

So, you might argue that that's why we got the Happy Chair.  And you're right...but the Happy Chair isn't waterproof so I can't take it in the shower with me.  And she can't sit out in the yard with the sprinklers in the Happy Chair.  This is the Happy Chair's ONE FLAW.

The other night I went on a hunt for a "giant bumbo."  I figured there had to be some special needs product out there that was just like the Bumbo, but more supportive for kiddos like mine who still benefit from the Bumbo, but need a little more support because their body is bigger.

I found what I was looking for.

And it's $200!!!!!!!

This is what gets me.  It can't be much bigger than a Bumbo, right?  It can't be much more expensive to make than a Bumbo.  So, why is it 6 and a half times more expensive?!!  I'm thinking about writing the company a little email...

Dear Childrite Seat Company,

My daughter, Sadie, is 2 years old and has Cerebral Palsy.  She doesn't talk, she doesn't eat or drink well, and she doesn't sit independently.  She still fits in her Bumbo Seat, but it doesn't offer her the kind of support she needs.  Just tonight I was telling my husband, "we need a Bumbo Seat with a high back" and then I found your product.  I was so excited to see that it's exactly what we need, exactly what I was imagining.  I was ready to order one right then and there...then I saw the price.

I am appalled and disgusted at how much you are charging for this "Giant Bumbo Seat."  That's what it is, right?  I can buy a Bumbo Seat at Target for $30, why is your chair more than 6 times that price?

I imagine it's because most go through insurance to purchase your "therapy product."  And while we have great insurance, they have recently paid for Sadie to have a wheelchair, a Chillout Chair, and in the recent past have also provided her with a Tumbleform Chair.  We've been denied a swing, so I doubt they'd approve your product.  Not to mention that sometimes I don't want to wait 6-12 weeks to go through the process of using insurance.

I want to buy your product with my own money.  But it's too darn expensive.

You must make a killing in the profits from these.  And I'd be willing to buy one for $50, even $75...but $200 is ridiculous.  It's insulting.  Just because my daughter cannot sit independently and is too big for most supportive sitters, shouldn't mean that I deserve to look harder, wait longer, and pay more for something she needs.  We are already disadvantaged enough in this family, it's hard to believe you would want to make our lives more difficult.  But that's how it is when buying special needs equipment.  Everything is more expensive, more difficult to obtain, and there's always a wait of at least 4-6 weeks...minimum.

Please consider a "non insurance price."  I mean, the doctor's office does it, right?  Why shouldn't you? I would still like to purchase your product at a reasonable price if you'll let me.

I look forward to hearing back from you at your earliest convenience.

Sincerely,
Christie Beck

What do you think?  Should I send it?

Update:  I posted on my special needs Mommy forum about this.  Turns out there is a mom in our group who has one her daughter doesn't use.  She is willing to sell it to me.  And she is willing to let me borrow and try it out to make sure it's what we want first.  I will definitely let you know how it goes.  But it doesn't change the fact that I am still disgusted by the prices offered for special needs equipment.

cutest thing ever

Sadie has just recently learned to laugh.  I promised I'd catch it on video for you...here you go!

Probably the cutest thing you'll see all week!

We have a good Daddy in this house

For the past two days I've been sitting in a tiny room in a hotel with about 35 other people.  I have to take a class required by the state for my teacher certification.  My weekend involved getting up at 6:00am, driving 40 minutes across town, and sitting in a room doing teacher activities (none of which are new to me), that I will never use because I don't have a classroom.

Can you tell I have a bad attitude?

And in a month, I have to go back for another weekend.  Blech.

Brian, on the other hand, facilitated Daddy daycare while I was gone from 7:00-4:00 all weekend.  Friday night we laid in bed and went over schedules.

"I will give her medicine at 7:00 before I leave, you need to make sure then she eats at 8:00, 10:00, 12:00, 2:00, and medicine at 4:00.  Then I'll take over when I get home."

"Do you know how to mix up her food and how much to give her?"

"Do you know how to tell if she wants more food?"

"Do you know what to do with her nighttime diaper when she wakes up?"

"Are you gonna go anywhere?  Should I take your truck and leave you the car?"

I knew he'd do just fine because he helps out so much anyway, but still, it was a little stressful to leave someone else in charge for so long...even if it's Daddy.

I got texts throughout the day.

"Sadie is up, fed, dressed, and outside with me while I water plants."

"She also figured out how to tumble out of her tumbleform chair.  I came around a corner and saw her just about to roll out head first."

"Sadie is playing on her table."

"Super duper ultra sad mega cute sad lip due to a mild head bonk."

"She finished her peach yogurt that she didn't complete this morning.  She was still hungry, so I did a frozen cube of green beans.  Pretty funny reaction she gave at new food."

"Sadie is not a super eater today.  Also she has bloody gums at the molar spot.  Ouchie."

He did a good job.  And today wasn't so bad, I relaxed much more.  But, I am so thankful that I get to work from home and don't have to go to a classroom all day and be tired when I come home, but still have to take care of Sadie and dinner and bathing and whatever.

We are blessed.  And we have a good Daddy in this house.

Bump Watch - 15 Weeks

This week I had a minor breakdown after our midwife appointment.  I started doubting that having our baby in the hospital is a good idea.  Mostly I'm just scared of the unknown.  I know having a baby at home, and I know it's a wonderful experience.  I don't know the rules and regulations at a hospital, I don't know the facilities, I don't know getting there when I'm in labor, I don't know having nurses all touching my child when it's born.  And all this stuff freaks me out.  

I was fine the next day, and I told Brian that it probably won't be the last time I have this kind of freakout.  But I'm scared that I won't be able to labor the way my body needs to.  I'm scared that we'll pick up some germ.  I'm scared that the nurses won't respect our wishes regarding vaccines and antibiotics at birth.  I'm scared they won't let us have the birth we want!!

And it's irrational fear because people have babies in hospitals everyday.  Heck, every minute!  I'm sure once we get to know the facility better and tour and talk to other people and get reassurances from the midwife, I'll feel better about it.  There just seems to be so much more to think about when planning for a hospital birth when you already have a 2 year old special needs child!!

Anyway, lets get on with the bumpdate...

How far along?  15 weeks!  I'm starting to want to eat produce again...and not sleep all day.

Weight Gain? I didn't weigh myself today.  It's depressing.  My cousin, who's 23 weeks pregnant has gained a total of 15 pounds.  I'm fat and I'd rather not know just how fat I am!!

What's up with my Body?  I'm itchy itchy itchy.  My tummy is stretching and my skin is super itchy right above my hips and on my sides.

My boobs are still super sore!  I can't remember from last time I was pregnant if this lasts the entire pregnancy or if this is going to fade out, but seriously...ouch!

I'm starting to crave good food again, although I still want a lot of salt, and potato chips are meeting my needs there.  But this weekend we went to the local farmer's market and bought some good produce and then we came home and I ate a cream cheese, alfalfa sprout, cucumber sandwich with a side of cherry tomatoes and potato chips and a big glass of milk.  I felt SO GOOD after eating that!!

My hair and skin still haven't keyed in on the good pregnancy hormones... still waiting for that to happen!

Food Cravings?  I still want potato chips.  And popsicles.

Movement? I've felt a little bit of movement, but not a lot, and I really have to be paying attention even to notice that little bit.  I'm looking forward to feeling it more and more.  Brian touches my tummy and presses on it almost everyday hoping to feel something, so I'll be glad when he finally can share in that with me.

Gender? I had a dream last night that we had a boy and that it happened so fast that I didn't even have time to look at the clock and see what time he was born.  But we named him Scott Jack Smith (I guess our last name was Smith in my dream).  I thought that was a weird thing to name our child since my best friend's first two sons are named Jack and Scott.  

What I'm looking forward to:  We have our ultrasound appointment to find out the sex on May 14 and, even though I debated even keeping it (because these ultrasounds cost $120 each!!), I am excited to find out if it's a boy or a girl.  Then we can start really focusing on names, we can start buying stuff, and we can start really planning in our hearts for when we meet this little babe of ours!

What I'm not looking forward to:  All this week the temperatures are supposed to be in the 90s, and by the weekend we should hit 100.  I know summer is coming, but I'm not ready yet.  I feel like, though, once we hit 100 there's no going back...I'm definitely going to take up the offers given by multiple neighbors to use their pools!!

Best moment of the week:  I've had a really good week!  We went to Costco as a family on Saturday and Sadie was pleasant.  We walked to the farmer's market on Sunday as a family.  And Sadie and I went swimming for physical therapy on Tuesday.

Worst moment of the week: Going maternity clothes hunting and ONLY finding shirts.  I bought 4 Old Navy tank tops and found $.97 maternity tees at JoAnn Fabric (too bad they only came in like 3 colors...) so I bought 3 of those.  But I can't seem to find ANYTHING to wear on bottom.  I think I'll be headed to Goodwill to find pants that fit my legs, then I'll sew in my own preggo panel.  That's what I did last time and it's not too hard.

How baby's growing: My baby is the size of an apple and can move all its joints and limbs.  It can sense light.  Its forming taste buds and sex organs this week too!

Yes, I cut my hair, and no, I don't like it.

True Happiness...Joy

The latest "fad" on Facebook is to post all sorts of "posters" with quotes on them.  Most of them are inspirational, some are funny, some are sarcastic, but I see a theme in a lot of them...happiness.  It seems like so many people are searching for happiness, and they somehow feel like they have to first go through despair or heartache before they reach that happiness they so long for.

As you know, if you've been reading this blog for any amount of time, I'm not always happy.  It's hard to be happy when you're cleaning up puke 30 minutes after you just cleaned up poop, all the while your child has been screaming the ENTIRE day and your husband is out of town!!  But I find joy in even the littlest things throughout my day.  And joy is different than happiness.

Joy is that realization that not only did my baby NOT die, but that she is going to do things NOBODY ever thought possible.

Joy is that smile that I see first thing in the morning when I go into Sadie's room.

Joy is that giggle that I hear every night when we first get into the tub.

Joy is realizing my daughter loves me even more than I love her (if that's even possible).

And sure, she may not always make me happy...even if she can't help it.  But I am always joyful of her cute face and her soft skin and her beautiful hair.  And for me, I had to go through heartache before I realized this joy...but I don't think it's a requirement.

What do you find joy in in your daily life?  Is it your children?  Your family?  Your job?  Don't forget to recognize it when it comes creeping in...especially on those days when you are NOT happy!

PT in the pool!!

Today we had Physical Therapy in the swimming pool!!  It was such a perfect day for us to do it, and since our community pool is heated, it's open all year...which means we don't have to wait another month to be able to swim!!  And they are so nice in the office, because I have to buy a punch card to come swim, and they don't punch Sadie, and they told me they won't punch Denise either (our PT) since we're coming to do therapy.

I think we're going to start coming every Tuesday for the rest of the summer.  Sadie loves the water so much, and it was such a good time of day, and it gets us out of the house (without having to drive very far...the pool is less than 2 miles away).

long legs!!

Denise did a lot of the same things I do with Sadie in the pool, like dragging her, swinging her around in a circle, and just letting her kick on her own.  But she also did more that I don't do... therapy stuff like stretching her hands or her ankles.  It was good for me to see so that we can try to replicate it another day of the week (maybe Saturday?).

Anyway, I'm really excited to see where this "new" kind of therapy takes Sadie and I look forward to having a great summer in the pool!!

Visiting Dr. Wendy

Let me start off by saying that I love Dr. Wendy.  We could not be blessed with a better pediatrician.  She listens, she knows our family, she genuinely cares about Sadie's welfare, and she gives me hugs at our appointments!!!

When Wendy walked in the room today the first thing I said was, "we have LOTS of good things to tell you!"  Her eyes lit up and she goes, "great, I want to hear ALL of them!"  And I knew she meant it.  Even though she was a half hour late getting to us, I knew it was because she spent this kind of time with all her patients, and I knew she wouldn't make us feel rushed even though we were probably the last appointment before her lunch break.

I told her about Sadie's new sleeping habits, we brought the Happy Chair, so I showed her that, and I proudly showed her Sadie's beautifully healed stoma (her gtube button hole).  It was such a great way to start off our doctor appointment, when so many times before it hasn't been this good.

Then I got down to the two major important things I wanted to talk to her about: the swallow study, and Sadie's eating/calorie intake.

I brought up the swallow study.  She said, "yeah, it looks like they want her to eat little bits throughout the day."  I said, "but she aspirated on the thicker consistency more than the thin one..."  She admitted she hadn't read that part.  I told her about my frustration and how they made me pull Sadie out of her routine and then expected her to act the same as she does at home.  I told her that I was disappointed in how bad the test made Sadie look, because I know she can eat better than that.  Then I said that our feeding therapist recommended another test in 3 months just to establish a history and some kind of baseline, but that I'm a little hesitant to do it again.  Wendy goes, "What is the swallow study helping us accomplish with Sadie?  Is it giving us any important information that is helping us further her development?"  The answer for both of us was no.  She told me she thinks we're at a critical point in Sadie's development and we shouldn't be putting LESS in Sadie's mouth and more in her tube...especially since she WANTS to eat.  I agreed.  We also agreed that since Sadie has never been sick with pneumonia (or really anything) and her lungs are perfectly clear everytime she checks them, she's not worried about what the swallow test says.  She even went so far as to tell me she doesn't care if we ever have another swallow study ever again.  Because Wendy knows that Sadie doesn't test well. On paper my child is a completely different person.

So, then I brought up that Sadie's been getting all her meals orally, except for first thing in the morning. We tube feed her before she wakes up to get her blood sugar up since she's been asleep all night.  I told her I pay attention to her protein amount, and her fluid amount, but I'm a little worried that she's not getting enough calories.  We looked at her weight from today, 27.3 pounds, on the growth chart.  She said she's still right there around the 50th percentile (although she's fallen a TINY bit below it) and that she's not concerned one bit about her weight right now.  We also talked that according to her height she should be in a little higher percentile, but that she's probably predisposed to be tall and skinny seeing as Brian and I are both just that.  I asked her about prescribing a calorie enhancer such as duocal, but she wasn't comfortable with that just because she doesn't know what all the options are out there for things like that and she wanted to make sure if we did get one that we got the right one for our situation.  We concluded on that front that we'll see GI in about 3 months and weight check again and then talk to Dr. Pasternak about that if we/he feel like Sadie could benefit from it.

But then here's the best part...

I told Wendy that since she and GI want Sadie weighed about every 3 months, that I figured I'd alternate between them, so I'd end up seeing each doctor every 6 months or so.  So she goes, "okay, so see Dr. Pasternak in about 3 months and then come back to me in 6 and we'll talk."  I said, "...in 6 months I'm going to be REALLY pregnant..."  She was like, "Oh!  Well, then come back after the baby is born and we won't worry about it too much..."  So, I asked her something I had thought about but hadn't planned on asking..."can we bring our new baby here to this clinic?"  She said for sure we could.  I said, "can the new baby see you or do we have to see a different doctor because you're special needs?" She told me she'd see both our kids and she'd do well checks together!!!

We made a plan that I'd call once the baby was born and make an appointment to weight check Sadie and have the new baby's first check up all at the same time!!  And now I don't have to worry about finding a new pediatrician, having 2 doctors to call/keep track of, etc.  And since Wendy already knows our family and we already love her, it'll work out perfectly!!!

Yay Dr. Wendy!

What about your kids's doctor?  Do you like him/her?  What is it about him/her that you like so much?  Would you recommend him/her to your friends?

Our no good very bad horrible awful day

Misery loves company, right?

Let me tell you about our no good very bad horrible awful day...

Sadie woke up at 6:00.  Actually, this wasn't so bad, she didn't scream, she just did her yelling telling me she wanted me to come get her up now.  I imagine if she could talk, she'd be yelling, "Mama, come get me!"  And I made her wait another hour before I actually went in there.  Still, 7:00 is early...for both of us.  But she was COVERED in puke-drool when I got her out of bed.  And I spent a good 10 minutes combing it all out of her hair.  She must have been laying there awake a long time before she finally told me she wanted me.

And she was happy initially when she got up.  I didn't have to tube feed her breakfast, she actually ate it just fine.  But then the mouth ouchies came, and I started to smell something weird.

We've been struggling with the left bottom molar for a week now.  I remember her being like this when the right one came in and it was horrible...are all 4 really going to come separately like this???

I picked Sadie up to check and she had blown out her diaper...again.  She's had a SERIOUS blowout everyday this week!!  This one required clean clothes, a clean blanket on the chillout chair, as well as some disinfecting and sunshine, complete with gagging from Mama.  Sadie is the Queen of the land of Poopsplosia, she earned her crown this week!

At that point I started a load of laundry on the sanitize cycle.

Then she ate again around 9:45...and then gagged on her drool and barfed it all up again.  Another blanket change, more sunshine disinfectant, clean clothes for Mama and Sadie.  And I was ready to start another load on the sanitize cycle.

And the Advil I had given her likely came up too, so the pain was never relieved.

By this time it was around 10:00 and Sadie's vision therapist said she'd be here around 10:15.  So I laid Sadie on her therapy table with her toys and left her there.  She was NOT my favorite person at that moment in time.  She's lucky she got clothes, if therapy wasn't coming, I might have left her in her diaper!!

When Amy from Foundation for Blind Children came she goes, "um...I think she threw up a little more." By the time I picked Sadie up, she had successfully rolled her hair all around in it.  I found it a little hard to believe she had anything left in her tummy to throw up, but she proved me wrong, and she thought it was funny.

I thought I wanted to be someone else's mom today.  I went and took a shower while the therapist played with Sadie...I needed a break, because I was going to have to comb out more puke hair when Amy was gone.

We had an appointment to have Sadie's hands measured for splints today at 3:00, which meant we needed to leave around 2:00.  Sadie decided to scream the whole time until it was time to go.

I fed her again after therapy and left the bib on her...an hour later, the bib was so wet with drool I could have wrung it out in the sink.  She was obviously in pain...but I wish she could have been in pain more quietly.

Finally I was able to give her more Advil, and some Ativan.  Then she wanted to sleep, but it was time to leave.  If we didn't have to go she probably would have slept in my arms for a half hour or more.  That pacifier just felt. so. good.

Luckily, the medicine worked.  It calmed her down, and eased her misery a little.  We had a good appointment, then we went across the street and visited our friends at Ryan House.  They are so nice there and they love Sadie so much that they really cheered me up.

I felt much better driving home, I even called my mom!

When we got home, the weather had cooled down and there was a nice breeze, so we went to sit outside.  Sadie worked on her ouchie mouth (quietly) while listening to Elmo songs.  And I knitted (I'm making myself a sweater!!)

And before we knew it Daddy was home (he has been gone since Tuesday)...and all was right with the world again.

Even though you all probably don't care...somehow it just feels better writing this all down.

Bump Watch - 14 weeks

We saw the midwife on Monday.  It was funny because after we left Brian says, "that was a big waste of time!"  It did sorta feel like it...we packed Sadie all up, and drove all the way out there (it's really not that far), basically so they could weigh me and have me pee in a cup.

We did get to hear the heartbeat, which is always neat.  It was 160 this time.  Does this mean boy?  Or girl?  Who knows, but we'll find out May 14!!!  Yes, we scheduled our gender ultrasound appt.!!

So, let's get on with the bumpdate, since the midwife appointment was sort of boring...

How far along?  14 weeks!!  I've officially reached the second trimester and it feels like it!

Weight Gain? I've successfully gained all my weight back from being sick (yay?)  I'm +13lbs.  I'm feeling like I want to delete this feature in my bumpdate...

What's up with my Body?  THE MORNING SICKNESS IS GONE!!!!  Sadie woke up super early on Sunday and I just decided to get up with her.  I didn't realize until MONDAY morning that I didn't feel like poo when I wake up anymore!!  It's really a good feeling.  I even made Sadie's blended food Monday and didn't gag about it...I've really turned a corner.

I'm still having to be careful to eat eat eat all day long, because when my blood sugar gets low, I feel yucky...which is a problem I have even when I'm NOT pregnant.  It's just exaggerated when I've got belly fruit.

And my energy is back!  Monday I spent MUCH of the day running errands and I didn't feel exhausted like I needed a nap when I get home!

My belly is starting to itch on the sides where it's stretching, but other than that a lot of my discomfort is gone...for now!

Food Cravings?  This week I want potato chips.  And popsicles.

Movement?  I talked to the midwife about this because I thought it was really early to be feeling flutters, but she said it's possible.  She told me if I'm really in tune with my body that I could be feeling the baby move around in there.  I still get little flutters every now and then...but it's not a lot, and I really have to be focused on it to notice.

Gender? I want it to be a girl.  I will certainly be happy with a boy, but I have really decided that I love little hairbows and dresses and everything pink.  It's funny because when I was growing up, I only wanted boys...now I'd be happy with a house full of little girls!

What I'm looking forward to:  Clothes either fitting or not fitting.  Right now I'm still in that in-between.  I can wear my non-preg clothes with the belly band still, but it's not comfortable...and I can wear my maternity clothes, but they sorta need the belly band too.

What I'm not looking forward to:  Not being able to turn over comfortably in bed!  

Best moment of the week:  Running errands on Monday and not being dead tired when I got home.

Worst moment of the week: Having to wake up at 6:00am Tuesday and Wednesday to go administer the state High School test to my students.

How baby's growing: My baby is the size of a lemon and weighs about 1.5 ounces.  Oh, and it can pee.

Since I deprived you of a picture last week, here's my 13 weeks picture...on Friday, after I felt better.  And my picture from today of 14 weeks!

13 weeks

14 weeks

Sadie's new Physical Therapist

We didn't waste any time once we were done seeing Tami as our PT, we started right up with Denise the next week.  It's sort of strange to have PT at our house, but I'm sure we'll get used to it.  It's nice to not have to go anywhere, that's for sure.

Denise has now seen Sadie 2 times, and they're still getting to know one another.  She's ambitious with Sadie and agrees with a lot of my goals I have for Sadie, saying they are very reasonable.  And she's nice too.  They seem to get along well.

What I didn't know about Denise is that she's a Beaver.  (For those who don't  understand this reference that means she went to Oregon State University... my family is from Eugene, home of the University of Oregon Ducks.  The Beavers are our rivals, and we take our rivalry seriously in Oregon!)  She was funny when she told me this.  She said, "yeah, I saw your 'Go Ducks' sweatpants the first day I was here, but I figured I'd just let it go." hahahaha!!

I guess she also has an OSU sticker on her car.  Brian said to me after she was gone the second day, "you know where she went to school, right?"  I told him, "yeah, if I'd known ahead of time, I wouldn't have hired her!!"  hahahaha

Just kidding.

She's awesome and I'm really excited not only for her to work with Sadie, but just to be her friend.  She knows a lot about food and canning and preserving and gardening and things.  We are going to get along just fine...despite her alma mater.

Here are some pictures from Sadie's first time working with Denise...

This is amazing, we need to work on this position more

I'm trying to look at the camera, Mama, but this is hard work and I need to concentrate right now

Touchdown!!  Go Ducks! hahahaha

Any advice for PT in the home?  It's just still weird for me...

Easter 2012

We didn't do an egg hunt or give presents in an Easter basket, but we still had a good day hanging out with family.  And honestly, we have lots of time in our future to do those other things...and take our picture with the Easter Bunny.

Sadie was crabby today, it was just like old times.  She had to take 15 minute reset naps all day, with the paci and everything!!  It's been a loooooooong time since that's happened!  But she didn't sleep well last night, so she'd been up since probably about 3:00am.  By the time we got home from Granpa's and Nana's, she was so tired her eyes were all red and she was all spaced out.

But in between crabby times, she was her wonderful, happy self.  And she did something she's never done before.  She actually held onto her maraca and purposefully shook it and tried to put it in her mouth. It's made out of wood and it's pretty heavy, so I was really impressed.

Here are some videos of her doing this...

First the right hand, which is actually her weak side


Then the left hand, she was a little more adventurous on this side


Later, after she had another "reset nap" we put Sadie in her Happy Chair to show Grandpa how cool it is (he was sleeping when she was in it earlier in the day).  She doesn't have a shirt on because her dress was getting all bunched up in the back when we'd put her in her chair, so we just took it off!!  Check her out though...big sitter!



Overall we had a good day...and we were thankful in the car on the way home that Sadie isn't like this everyday anymore.  It's been a long time since she's been grumpy like today, and thank God!!

Happy Easter everyone!!

Sadie's strengths

Whenever I have to fill out information for Sadie and it asks what her strengths are, I always say communication.  Even though she can't talk.

Here's why.

We've been in a REALLY good bedtime routine.  About 8:00, Sadie eats and gets some milk in her tummy, then we give her a little bit of Ativan (just enough to settle her brain and her spasticity) around 8:20 or 8:30.  Then by 9:00 she's in bed.  And I don't mean like I'm in bed with her patting her to sleep.  I mean, I take her in there, lay her down on her side, plug her in, put the covers over her and kiss her goodnight.

And then we don't hear from her or see her again until morning.

This has been going on for over 2 weeks now and it's amazing.  It's been so nice to have multiple good nights of sleep, and Sadie wakes up happy too!

But last night, we changed it up just a tiny bit.  We went to the mall to pick out some new glasses for me, and we didn't get home until after 8:30.  So, we decided to give her the last of the blended food we had in the fridge just through her tube to save time.  Sometimes when we tube feed Sadie she gets more air in her tummy and has more of a tendency to puke a little up...especially if we lay her down not too long after giving it to her, so normally we don't do this before bed.  But, it was a different kind of night.

So, we did this, gave her her medicine, got her in bed by 9:15ish, and everything seemed fine.  But around 9:30 she started screaming.  Little screams at first, then it got louder and louder until I couldn't ignore it.  She was obviously trying to get someone's attention.  So, I went in there to see what she needed.

Turns out she had made herself tense and pushed stomach contents out through her tube (this isn't uncommon when her stomach tenses up), then that counteracted with the feeding pump pushing water INTO her tube.  And it resulted in popping the top off of the medicine port.  (If you're not familiar, there are two places on her extension to put in whatever we're giving her, there is the main port, then a smaller one on the side for medicine.  Both just have a rubber stopper.)  She wasn't, therefore, getting any water, and her stomach contents were also now leaking onto her bed along with the water that was being pumped in.

Once I noticed that this had happened, I fixed the problem, tucked her back in, patted her half a dozen times, kissed her, and said goodnight again.

And I didn't hear from her again until morning.

Now I don't know about you, but this to me is excellent communication.  Even though she wasn't able to say, "Mommy, my tube is broken, come fix it!"  Essentially that is what she was saying.  She got my attention, got me in there, got the problem solved, and was then able to sleep.

It just shows that she is aware of what's going on and what needs to happen.

Such a big girl.

A letter to Sadie, my big girl

Dear Sadie,

You are the light of my life.  I never imagined that I could love one little person as much as I love you.  I can't kiss you enough, I can't squeeze you tight enough, I never get sick of looking at your pretty little face or running my fingers through your luscious curly red hair.  And it makes me so happy to see you turning into such a big girl.

When you were born, I was sad.  Things didn't happen like I expected.  I didn't want you to be in pain.  I wanted things to be easy and normal, but they weren't.

Then as you got older I was overwhelmed.  You screamed in the car, you didn't sleep, your tummy hurt, you hated to be put down, you needed to be rocked and bounced day and night.  You were a lot of work.  You were still in pain somewhere and you couldn't tell me what hurt.  You couldn't tell me what you needed, and I was sad that I didn't always know.

Then you started getting teeth and that hurt even more.  You would wake up at night and cry in pain and there was nothing I could do for you to make it stop.  When you love somebody as much as I love you, it hurts when you see them hurt, especially when you feel helpless to help them.

But now you're two and you've suddenly turned into a big girl.  You sleep all night, you're happy all day, you clearly communicate when you're unhappy without losing control.  You ride in the car without screaming, and you are content "playing" with your toys by yourself while Mommy takes a nap.  You don't need to be rocked all day.  Your tummy doesn't hurt anymore.  And even though you're still getting those molars, you seem to be able to manage your own pain better.

You are fun to be around.  You are learning so much and I love your big smile when you realize you've found something you like.

Some people might look at you and think you're imperfect because your brain doesn't work the same as theirs, but when I look at you I see the perfect little girl that God meant for me and Daddy to have.  I used to wish you were different, that you didn't have the special needs that you have, but now I know better. You were made especially for me, I was meant to be your mommy, and you were meant to be the child that made me a mommy.

I have learned so much from you already in your short life.  I've learned to be strong and not give up.  I've learned that if something hurts or you need help, keep telling people until you get that need met.  I've learned that it's okay to ask for help when you need it, and to find enjoyment in even the smallest achievements.  Your life has opened my eyes to a whole new world that I didn't even know existed and I have met amazing and wonderful doctors, therapists, and other special needs moms because of you, people I now can't imagine our life without.

I used to wonder what life would be like if you weren't born the way you were, but now I don't even think about it.  I don't want you to be different.  You are my little blessing just the way you are.

As you grow up, don't ever let anybody make you feel inadequate, or like you're less than enough.  You are just the way God made you, and God doesn't make mistakes.  And you can do whatever you want to do.  You can be as independent as you want to be.  Don't ever let anyone make you feel ugly.  You are one of the most beautiful children I have ever seen (and I'm not just saying that because I'm your mom), and your pure heart and your innocence only make you more beautiful.  Don't ever let anyone make you feel stupid.  You are smart.  It doesn't matter if you can't walk or can't talk or you don't eat like other people do, those are not reflections of your intelligence.  I know that that brain is working hard right now to learn and that if you could, you'd talk my ear off.  Someday we'll find a way to help you express yourself and then I won't be the only person that can understand when you tell me you love me.

I can't wait to see you grow up even more.  I can't wait for you to reveal more about your personality, to see what kind of big sister you're going to be, to learn how independent you can be.  I can't wait for you to "find your voice."  I can't wait to see where your talents lie.  I am eager to see you do things that we've dreamed of since you were born.

I love you so much, my big girl.  I know that you know that, and I hope that you never forget it.

Love,
Mommy



I linked this up with...

A cultural shift...in the right direction!

Last weekend our new neighborhood had a block party.  We were really excited about this event because we've heard such wonderful things about our neighbors, but only have met a few.

When we attend group events like this, and bring Sadie, I am always a little nervous as to how people will react.  I worry that they'll be afraid of us, or be intimidated by us, or the worst...feel sorry for us.  So, I always dress Sadie up really cute, make sure her hair is fixed and that her face is clean.  I mean, Sadie is for sure a "looker" so I want people to see how cute she is FIRST, and her disability SECOND.

We walked to the end of the street filled both with excitement and nervousness...at least I was.

But people were SO NICE.

There was a karaoke machine and people were singing and it was loud where we were standing, so I moved Sadie over to the lawn area and just parked her there.  There was an older man (everybody was older) sitting at a table over there, and I could see her, so I just left her there.  And I watched her.  And people who had met her when we were standing in front of the speakers, or who I'd met and pointed her out to, went over and were talking to her, touching her head, rubbing her legs, etc.  It was really sweet to see.

Nobody was afraid of her.  Nobody was intimidated.  Nobody was obviously keeping a distance from her or from us.  Everybody was just super nice.

So, on Monday, I walked down the street and knocked on the door of one mom I met who has a 2 year old and a baby and asked if they want to go to the park with us.  Sadie spent a long time on the swings and had a really good time.  And I made a new friend.

But the most amazing part of this whole story is that my new friend invited us to a community Easter Egg hunt tomorrow morning!!  We're not going, because Sadie can't find eggs, and even if she could, I'm sure she can't have what's inside of them.  But, the fact that this woman didn't even think of that and just invited us like we were a normal family with a normal kid who would want to hunt Easter Eggs really made me happy.

I feel like this whole experience reflects a cultural shift.  When I was younger I didn't know about special needs kids, I'm not sure I was around them enough to be aware.  I remember staring.  I remember being afraid to ask questions.  I remember they weren't at my parties and in my classes and at the playground.  Were they hidden?  Or were there just fewer of them?  But now days it seems like special needs kids are everywhere.  I mean, autism diagnoses are booming, medical technology is so amazing that it is saving the lives of babies born at 20-something weeks, and, because of the internet and facebook, we are learning more and more about different families with special needs kids.  We are speaking out against the word "retarded" and adapting equipment and activities so that everyone can participate.

I am proud of my new neighborhood and the acceptance they showed us last weekend.  And I love that Sadie was seen as a 2-year-old, not a disabled 2-year-old who can't do anything.  I think we're really going to like it here.

So, tell me...have you had an experience like mine?  Where your kid was accepted as a kid and not as a special needs kid?  Did you recognize it when this happened or were you like, "we don't treat him/her any differently at home so we don't expect anybody else to either"?  How did you react?