Let's get Sadie riding!!

On September 21 we will be having a garage sale to raise money to "get Sadie riding."  Now that she's had her hip surgery, I want to get her on a horse doing hippo therapy.  I am convinced this will help improve her core strength and lead her toward sitting independently.  Our goal of $750 will pay for a year's worth of therapy going twice a month.

If you're in the Phoenix area and have items to donate to the sale, please contact me at christie.m.beck@gmail.com.

If you are in the Phoenix area and would like to SHOP at the sale, please continue to visit the following link for more information as the date gets closer.

Special Needs SuperStar

And, if you are not in the area (or if you are), but you'd still like to help, please click on the donate button below to give.  Thank you!!!

The End of Beck Family Blessings

I know some people have been wondering where I've been...not blogging, obviously!!

Life just has been way more busy than I was expecting with 2 children!  Ezra is a lot of work now that he's crawling...and I am going to work full-time this year now that Sadie's in school (she's going to ride the bus!!).

It's not that I don't think about blogging, it's just that most days I don't even turn on my computer...especially now that I have an iPhone!  When I'm done working, I have to feed someone, nurse someone, dispense medicine on time, make dinner, put everyone to bed, and then often grade some more papers.  Sadly, there is just no time for blogging anymore.

But don't worry!!  You can still keep tabs on my family and how Sadie's doing on tumblr at specialneedssuperstar.tumblr.com, so make sure you bookmark that!!  Tumblr is just another blogging site, but it better fits my changing needs.  I can post more pictures and videos, and I can do it all from my phone...which means while waiting at the doctor's office, or during my lunch break, or while I'm in a meeting.

I have enjoyed this part of my blogging life, but it's time to move on...so I hope you move on with me!

See you on Tumblr.

Sincerely,
Christie
aka. Beck Baby Mama

PS. Sadie had her hip surgery June 24th and it's been a rough road.  She's doing okay, but she's uncomfortable and screamy...which is making me uncomfortable and screamy.  But we have new help and she's awesome, so we'll get through it!!

Sadie's new life goal

I don't know if I've written about it in the past, but I have a short list of life goals for Sadie.  Meaning, these are things I'd like her to achieve at some point in her life.  They are things I know will take years of working on and lots of practice.

One of them is potty training.  I truly believe that with the right communication skills, Sadie can be out of diapers...someday.  We are actually in the process of getting a shower seat/ toilet chair combo.  Once we receive this, I'm going to start toilet "timing" and just like she gets fed on a schedule, I am going to do my best to sit her on the toilet on a schedule.

Another life goal I have for Sadie is to be able to sit independently.  Sitting opens up a new world of possibilities.  And actually I'm hoping this can happen sooner rather than later.  If she can sit, she can take baths.  If she can sit, we can eliminate the car seat and she can use a 5-point harness seat belt (when she's big enough, of course...I know children now stay in car seats like until they're 8 or 9!).  If she can sit, she can sit on the toilet, which takes the previous goal to a whole new level, because then she can potty anywhere and not just at a facility (aka home & school) that has the right equipment to support her on the toilet.

I want Sadie to be able to do a standing transfer.  This means that she can lift herself from a seated position, with the help of another person, or a bar, to another seated position.  So, she'd be able to hold on to me and stand up from her wheelchair and move to sit on the toilet, or the car, or the couch.  Ultimately, I'd like her to be able to take a few steps, but I'd be happy with just a stand and pivot.  This goal keeps me from having to lift her when she weighs so much, and keeps us from having to get a lift in our home...which we might end up with anyway.

And I've just added a new goal.

Yesterday, Sadie had her swallow test.  If you remember, the last one she did didn't go so well.  They told me we shouldn't be feeding her and that she should be primarily tube fed, with maybe 5 bites per meal.  And I was so frustrated and angry, but just kept doing what we've been doing.  And Dr. Wendy told me we don't ever have to do another test again if we didn't want to.  Well, we had to do another test, because insurance told me they needed the test results to justify paying for the thickener.

I over-prepared.  I took the feeding therapist.  I scheduled the test as close as possible to when Sadie normally eats.  I've been feeding her in a similar chair at home that they do for the test.  And I didn't starve her, like they say I should.  And this time she didn't aspirate.  She drank nectar consistency, which is like one of those Naked Juice or Odwalla smoothies.  They not only recommended that we start doing more liquid, they told me to start giving her chunks of stuff to munch, like pieces of banana or avocado.  She is just getting so strong!

So, I've added a new life goal.  I want Sadie to drink from a straw.  I am realistic in that I don't think we'll ever get rid of the tube.  The tube is so convenient to give extra fluids and medicines!!  Sometimes I wish I had a tube...boy did I wish this when I was pregnant! Think of how much it would help with morning sickness and hydration!!  Anyway, I think she'll always have the tube, but if she can control her own drinking through a straw it would be a big step.  I don't know if she'll ever be able to hold a cup to her mouth, so using a straw keeps me (or someone else) from having to pour liquid into her mouth and risking a mess.

I truly think Sadie will be able to do these things.  And probably once we learn some more communication, I'll add a life goal that has to do with communication.  I really think Sadie has the potential to go far, and to live an enjoyable life, and to do great things.  She is an amazing person.

Do you have a special needs child?  What are your life goals for him/her?  Maybe you haven't thought about this before?  Maybe it's time to start... if you don't have something to always be working on, you don't go anywhere.

From the mouths of Babes

When I was young my parents had friends, the Reynolds, who were part of a group of friends who all had children at about the same time.  But the Reynolds were different, their son, Jason, had suffered severe brain damage and was... well, like Sadie.  Jason was about my age, maybe a little older, and being around him as a little kid really effected me.  I still remember being curious, but a little afraid.  I was kind of a shy kid and got embarrassed easily, so I'm sure I had a lot of questions, but that I didn't ask them.  However, when I was about 5 my parents got divorced and we sort of lost touch with a lot of people my parents were friends with as a couple, and I don't have much recollection of being around Jason after about then.

I don't know about you, but I feel like my age group of people didn't really have a lot of interaction with kids with special needs.  I remember seeing them at school, but I never had any reason to talk to them, they were always in their own special class, and even though I was curious, I was a little scared of them.  I didn't know how to act around kids with disabilities.  I didn't know how to talk to them, and their behavior was not something I wasn't used to, so I didn't know how to react to it.

Now that I have my own child with special needs, I want to make sure that kids her age are NOT afraid of her or unsure of how to interact with her.

Today was our second week at a new church, and Sadie's first week in the Sunday School class.  I was so appreciative of how they accommodated her and made sure she had what she needed and wasn't in her wheelchair the whole time and got to participate.  But, I think the teachers were more appreciative of me bringing her there so that the other kids could be around her.

When I went to pick Sadie up after church, the teachers told me that she liked all the kids and they did really well with her. They told me she liked circle time and had made a little friend named Ben.  Ben came out when I was there so that he could say goodbye to Sadie.  Then Ben looked at me and asked me how Sadie's brain got broken.  I wanted to cry.  Not because I was sad, but because to Ben it was that simple, Sadie brain got broken.  I told him that Sadie got really sick before she was born and it hurt her brain.  The teacher standing there told me that the kids had lots of questions and she didn't know how to answer them, so now she sort of knew what to say.  I told her I welcomed questions and wasn't afraid to answer them.

Then I was told that Ben hardly left Sadie's side the whole time, in fact he even pushed her wheelchair back from the bathroom.  Then I was told that the teacher caught Ben whisper to Sadie, "when your muscles get stronger, you can come play at my house."

Today the kids learned in Sunday School that everybody needs to hear that Jesus loves them.  So, every kid in the class told Sadie that Jesus loves her.  Which is exactly what she needs to hear.  In this big world that is so unfriendly to children like Sadie, this group of kids understood that Sadie's brain is just broken and that Jesus still loves her.  I hope that today was a learning experience for every child in that class today, and I hope that they remember Sadie and that Jesus loves her and she needs to hear that from them.

Dealing with Anxiety

I haven't been very good about blogging lately.  I was actually thinking this morning about quitting.  Then I thought maybe I should start a new blog called, "letters to my special needs child" or "letters to my children" or something.  But really, I write this to commemorate our journey, and I not only want to share our journey with others, I want to remember where we've been, because it's important to look back.  So, maybe I should be better about writing (between waking up every few hours all night, changing the diapers of two children, nursing, preschool drop-off and pick-up, making dinner, and working), because someday I'm going to forget the good times, the struggles, and the victories, and it'll be nice to go back and read them.

I've been struggling a lot with anxiety about the future (maybe that's why it's been hard to write).  As you can imagine, thinking about Sadie's future can be a little stressful.  And I'm an over-planner, so it's hard for me to imagine how I'm going to take care of Sadie when I'm not sure what her needs will be tomorrow, let alone 5, 10, or 20 years from now.  But what I didn't realize until I had Ezra, is that I'm just as anxious about his future.  I am just as equally uncertain about Ezra's future needs as I am about Sadie's.  The only difference is that lots of people have raised typical, healthy children before and I have lots of people to ask for help.

Some people eat when they're worried or anxious, some people don't eat at all.  When I'm anxious, I bite the inside of my cheeks and lip and tongue the retainer behind my front bottom teeth.  It's very uncomfortable, but it makes me physically aware of my anxiety, which can be helpful in trying to let it go.

So, how does one let it go when they're worried about the future?  Well, isn't that the million dollar question among special needs moms (side note: why is it that dads don't seem to worry as much about things?)  I thought I'd compile a list of a few things I do when I'm feeling anxious that help me feel better, even if only temporarily...

1. Call my mom.  I know not everyone has a good relationship with their mom, so call someone older and wiser than you, someone you respect and love, someone who can tell you you're doing a good job as a parent.  My mom doesn't always know the right thing to say, but she listens to my worries, and she tells me I'm doing a good job, and sometimes that is all I need to hear.  Because I think, if I'm doing a good job now, I'm going to stop doing a good job, and everything is okay, so it'll probably be okay in the future too.

2. Write.  Sometimes it's public blog writing, sometimes it's a private prayer journal, but somehow getting it out on paper makes me feel better.  When I blog, I am often seeking empathy from friends and family and the special needs community.  Sometimes I am just seeking accountability by making my feeling public.  And sometimes, how I'm feeling needs to just be between God and me.  I also think there's some value in writing down these fears and worries so that you never forget where you've been and what you've accomplished.

3. Exercise.  Do something active.  When you're body is working hard, your mind has a chance to clear.  I know that if I go for a walk or a run when I'm working out a problem in my head, I often come home with a solution.  It may be more about the fresh air than the actual exercise, but working through something physically can be very rewarding and lift my spirits, and clear my mind.

4. Get outside.  Like I mentioned previously, fresh air can really clear one's head.  When I lived in Oregon, it wasn't out of the question to drive to the coast and sit on the beach and just stare at the ocean.  There is something amazing and overwhelming (in a good way) about the ocean.  But you don't have to be near the ocean to get this.  Some of my favorite things to experience outside are sparkly afternoon water, the smell of freshly mowed grass, and the sound of a fresh breeze rustling through the trees.  I've also found that watching ants can be very calming, somehow their OCD-like behavior reminds me that if I just keep working on something one day at a time, before I know it, my big problem won't seem so big anymore.

5. Do a craft.  Sometimes I have my best ideas or remember some of my favorite memories when I'm sitting at my sewing machine, or painting a bedroom.  And if you're not crafty, get on Pinterest and lose yourself in the possibility of all the things you could do!!  It's a great way to escape reality for a while.  And if you are crafty, just think, you'll have created something!

Over the next few weeks we have a swallow test scheduled and a visit to the GI doctor, two things I dread.  I have been losing sleep thinking about how to plan for both of these so that I don't look like a fool, and so that I can best represent my child and her abilities.  I guess I need to spend some time doing some of the things on my list.  And I will try my best to give updates after each of these experiences.

Until then, I'd be happy for you to write in the comments what you do to help with worry and anxiety over your child's future, and let's all work together to keep the stress down!!

Dear Ezra - 5 months

Dear Ezra,


I can't believe you are almost a half a year old.  These past few weeks have brought on lots of exciting new things.  You can almost sit independently.  You use your voice a lot more than you used to.  You are getting really good at reaching out and grabbing for something if it's presented to you.  And that first tooth is about to pop through!

The one thing you still can't do though, is turn back over to your back once you've gotten yourself onto your tummy.  And you only roll onto your tummy in one direction.  Every time.  It makes me laugh, because if I don't strap you into your bouncy seat, you are strong enough to turn yourself over IN THE CHAIR.  And I lay you down to sleep between those blocks that are supposed to keep you from rolling over, but you still manage to do it somehow.  Yet, even with how strong you are to do these things...you still can't figure out how to turn back over!!

You are sure cute, though.  When Grammy Rachel was here last week we took you out shopping with us and so many people stopped us to tell me how beautiful you are.  So many people commented on what a cute baby I have.  And you're so fat.  They often also comment on how big you are!  You are now 5 and a half months old and we just pulled out the 6-9 month clothes, some of which are already too small!!

Sometimes when I hold you and nurse you I lose my breath for a moment because I am so in love with you.  It overwhelms me how much you need me and love me.  I am amazed that you are so smart and are learning to do so many things that we never got to experience with your sister.

You are so curious.  Last night I gave you a piece of paper and you played with it for a half hour.  We gave you a baby spoon the other night while you sat in your high chair and we ate dinner.  We watched you explore it and put it in your mouth, even gag yourself a little.  You want to touch my phone whenever I'm holding you.  You try to put everything in  your mouth.  It is so fun to watch you explore and grow and learn.

When we took you to the baseball game last week, there was a family sitting in front of us; a mom and a dad and their freckled, red headed 20-something-year-old son.  And I got a glimpse of the future.  Someday you're going to be 20 something years old.  You're going to be a man.  And I hope you still need me and still love me.  I hope that when I see you and give you a hug I still lose my breath for a moment at how much I love you.

I love you little Ezzy ding dong.

Love,
Mommy

PS. This is what you look like at 5 months

Headed to your first baseball game with Daddy!

Cerebral Palsy Awareness Day 2013

Today is Cerebral Palsy Awareness day.

In the interest of awareness, to help people understand more about Sadie, and about CP, here are some things you should know about her. 


1) Sadie is just like other 3 year old girls.  She loves to get dressed up, she likes it when we fix her hair and make her pretty.  And she likes to be around other children.

2) Sadie gets frustrated when we don't understand what she's trying to tell us.  Her physical limitations reach beyond not walking or sitting, not being able to speak is one of the most limiting things she lives with.

3) Sadie goes to preschool and is in a class with 7 other little kids who are just like her.  Her teacher works very hard to help these kids touch things and hear things and experience as much of the world and learning as possible.

4) Sadie has a visual impairment called Cortical Visual Impairment.  This means that her eyes see, but her brain doesn't interpret the information.  She often responds best when people talk to her instead of when they wave at her.  Many people try to give her toys, but if they don't make noise then she generally doesn't enjoy them much.

5) Sadie is physically disabled.  Cerebral Palsy is not contagious, don't be afraid to touch her or interact with her.  She loves people.

6) Sadie's favorite thing is to be in the water.  She loves to take baths with Mama and she loves to go swimming.  If ever she's in a bad mood, the water will calm her.  If she's tired but just can't calm down enough to sleep, the water will relax her.  And if she is not feeling well, I know I can always get a smile by putting her in the water.

7) Sadie has a feeding tube that goes directly into her stomach.  However, she loves to eat.  She loves food and she's getting better at eating it.  But she needs the tube because she can't drink.  And sometimes we give her food in her tube because she is mad and can't calm down or she needs to sleep.

8) Sadie used to scream in the car.  Every trip.  Now she likes it.  Her favorite thing is to ride with the window down so that the wind will blow in her hair.

9) Sadie has a kitty named Yuri.  Yuri often sleeps on Sadie's bed at night when she's going to sleep.  If she's really upset, he comes and lays against her back like he's reminding her that she's gonna be okay.

10) Sadie has the best smile ever.  When we're out in public strangers often stop and comment on how pretty she is.

11) As a result of Sadie's brain damage, her head is small.  Because her brain didn't grow, her soft spot closed up when she was very young.  However, she has the most amazing red curly hair that nobody ever even notices that her head is small.  Her hair is her crowning glory and always the first thing people comment on when they meet her.

12) Sometimes Sadie needs to move.  When she was little we bounced her violently.  Now we rock her.  Violently.  We believe that this scratches some kind of itch in her brain.  It's very physically demanding, but it stops the screaming.

13) Sadie really loves to be outside.  She loves to feel the wind in her face and her hair.  She loves to have the warm sunshine on her skin.  We go for family walks almost every Sunday morning.

14) Sadie takes medicine for reflux.  It may help with the burning, but it doesn't help with the spitting up (we call it erping).  We often have to change her clothes multiple times a day and many of her shirts are stained.

15) Sadie has some really good ideas.  Someday, I hope that I can help her communicate them more clearly with her body and her words and her heart.

Sadie can do so much more than we ever expected, more than anybody ever expected.  I can't wait to see what she will become.  I can't wait to see how she will interact with her brother, and how many friends she will have as she continues through school.  We celebrate Sadie everyday at our house.  We celebrate her little accomplishments, we celebrate what she almost does, we celebrate what she did yesterday, but couldn't quite do today.  She is our daughter, she made us a mom and dad, and we love her more than we could ever imagine.

Next time you see someone with CP or another disability, please take a moment to stop and think, think about Sadie.  Please don't assume, don't call names or judge.  You are looking at a person, not a disability.

I'm going crazy

If you're wondering where I've been the last week and a  half... I've been going crazy.

Sadie started having insomnia a couple of weeks ago and we had no idea why.  Usually her insomnia stems from pain.  But, she can't tell us what hurts.

Since this precocious puberty seems to have kick-started 5 year molars, we naturally assumed her mouth hurt.

We'd give her medicine and it didn't help.  We'd rock her all day and it didn't help.  She would no longer sleep in her bed, she would only sleep in her chair...when she would sleep.  Then the not sleeping would compound the pain and she was a MESS.  I mean screaming all day and night.  Needing to rock all day.  Not sleeping.  Not eating.  It was like she was 1 again!!

...and I was losing my mind.

Last Monday (the 11th), it was the worst I'd ever seen it.  I was gone all day at an in person staff meeting and it took Chelsea, Grammy, and Daddy to watch both kids.  And Brian sent Chelsea home early because he said she was so frustrated he felt bad for her.  By the time I got home, Sadie was out of control.  Not just whining, but full on screaming... until really late at night.

I finally emailed Dr. Wendy.  I mean, I was ready to take Sadie to the emergency room just so they could sedate her and we could all have a break.  And we still thought it was teeth.  And we thought this was probably going to go on for months.

But then Tuesday morning I was rubbing Sadie's legs and I noticed a huge lump in her thigh where she got her injection a couple of weeks before.  It was about the size of a quarter.  It didn't seem to bother her when I pushed on it, and it was invisible, but it was hot, and I wondered if this could be the source of her pain.

So, I emailed Dr. Wendy again, and I left a message for the nurse who did the injection.  By the end of the day, when they had gotten back to me, it was determined we needed to get to urgent care that evening.  Then urgent care sent us to the ER. And the ER told us it was nothing that wouldn't resolve on its own and sent us home.

But the next day it was bigger.  And it was turning reddish purple, like a bruise.  And she still wasn't sleeping, even with constant advil and ativan in her system.  So, we went back to see the Dr. on Thursday.  Wendy wasn't available, so we saw someone else, Dr. Hartley.

Dr. Hartley called it a hematoma and explained that basically she's reacting to the injection going into her muscle.  It's a blood clot, and it can be really painful.  So, we upped the amount of advil we were giving her and that seemed to help.  And we went back on Friday because he wanted to see if it had gotten any bigger and it hadn't.

Hot packs and advil and we were told it would resolve on its own.

But poor Sadie is still in a lot of pain, and she is still having trouble sleeping.  And although the lump is getting smaller, it's taking a long time.  How do we avoid this in the future?  She has to have this shot every 3 months for like 10 years!!

...and now I'm even more annoyed by this puberty thing.  And I feel sorry for my child who has been in pain for basically 2 weeks straight.  And she can't tell me what hurts or how I can make it better.  And that's why I'm crazy.

It's been a while - part 3: Hip Surgery

Yes, we scheduled it, the dreaded hip surgery.

We went to see the Orthopaedist and he said Sadie needs the osteotomy.  That's where they cut her femur and actually remove a chunk to re-angle her hip sockets.  It sounds pretty intense and I'm not looking forward to it.

The doctor said that normally he likes to wait until kids are at least 4 years old before doing this surgery, but that since Sadie is so huge, he doesn't mind doing it on her so young.  So, I guess that crazy hormone rush growth spurt is sorta good...although I'm pretty sure her hips are so bad because of the growth spurt in the first place.

I've talked to a couple of other moms who have been through this surgery with their girls, and the biggest thing I keep hearing is pain management.  Sadie won't be casted or anything, so I won't have to worry about that (thank God), but I have been told that muscle spasms can be pretty harsh.  I had (a different kind) major hip surgery when I was 19 and I remember the doctor had to cut through the nerves to do what needed to be done.  I still have weird nerve sensations on that leg.  For a long time there would be shooting pain as my nerves worked to heal and feeling was coming back.  It was very uncomfortable...and I imagine it'd be something similar that Sadie will experience.

We'll stay in the hospital a few days (hopefully not too many), then it's up to 6 weeks of recovery at home.  Being an online teacher, I really only get 3 weeks off in the summer, those 3 weeks will be spent doing this.  June 24th is the first Monday of my break and we'll be showing up to Phoenix Children's Hospital bright and early that morning!

Pray for us, wish us luck, whatever you can do helps!!

I'm terrified, but I'm trying to be positive and proactive in that I want this to rocket us forward in her physical abilities (like sitting), instead of set us back, like I've heard that it can do.

Ryan House Run 2013

2 years ago I participated in the Ryan House Run 10K with a couple of my co-workers.  Unfortunately, last year, I was pregnant and didn't feel like I could do it.  But this year I signed up for the 5K, to walk. I am nowhere near being able to run 3.4 miles yet.

And then I got this idea to bring Sadie with me.  So, with my friends, we walked 3.4 miles and Sadie joined us.

I think Sadie really enjoyed it.  So much so that I think we might be doing a few more "races" together this year.  As I begin project fit-in-my-clothes-again (we're going on a small vacation in May and I realized I couldn't wear sweatpants the whole time!), I am going to try to do my Couch to 5K during the week, and take Sadie on long 5K walks on either Saturday or Sunday.

We had a good time and we liked seeing our friends!

Baker's Dozen check in - March

Because of the time I was without a computer, I didn't get to do my check in at 2 months, but that's okay, it's probably boring to read about if I'm reaching my goals every month.  That's okay, I write this for me, not for you. 

It's funny because I always have more aspirations.  I mean, daily I think of projects I want to start and things that would be fun if I completed.  So, I've already started working on my list for 2014.  Probably, some of the goals below will also be on that list...and I haven't decided how many things yet to put on the list.  So, we'll see how this year goes first.  

I wrote my new year's goals in December... remember?  So, time for a check in to see how I'm doing so far... 

1. Build the bookshelf.  This was always more about having the money than anything else.  And I think we are FINALLY caught up from our end of the year and having a baby bills.  I actually measured the bookshelf and took a picture of it to send to the person I want to build it.  Now I'm just waiting for an estimate.

2. Finish knitting sweater.  This will probably be the goal I finish first!  I have both sleeves on and I am working on the collar.  I've worn it in its incomplete state and it fits!  I'm so excited to finally finish this sweater...just in time for summer! haha

3. Paint Sadie's room.  This is another one that I'll complete soon.  Grammy sent her big girl quilt for Sadie's birthday.  We got the changing table and painted it green.  I've picked out colors for Sadie's walls.  When Grammy comes to visit in a few weeks for Spring Break we'll paint the walls and hang the valance and Sadie's room will be completed!!

4 & 5. Do a triathlon & run 3 charity runs.  My feet have reached a point where it no longer hurts to put on shoes.  Yay!  So, I'm taking a break from the podiatrist.  I started the Couch to 5K running program...and then I caught a cold.  So, I need to start over now that I'm feeling a little better.  It's hard to find the time to run, but Ezra's starting to sleep better and more consistently, so I might start getting up early and leaving him in bed with Brian like I used to do when Sadie was little.  As for the charity runs, we were going to do Broxton's run as a family, but Sadie had a horrible night and we just couldn't make it.  I've signed up for the Ryan House run this weekend, but I'm going to walk the 5K with a friend.  And I'm thinking of bringing Sadie with me.

6. Put family pictures up.  I am starting to have big ideas for this... I've actually opened the boxes and reminded myself of what there is.  We'll see how far I actually get with this.

7. Make my own pasta/tortillas.  I made tortillas.  I rolled them out and put them in the frying pan and we actually ate them.  But it was a lot of work, and they weren't great.  Did you know there is such a thing as a tortilla press?  You put your little ball of dough in the middle, press down and voila! you have a tortilla!  And some of them are even like a griddle and they'll cook them too!!  I want this gadget for Christmas. (I'm gonna have to put remodel the kitchen on my list next year to make room for all my gadgets!)

8. Organize Sadie's paperwork.  Haven't even thought about this.

9. Home Management Binder.  This seems to be working out well with my new planner.  I'm keeping track of our menus and notes on Sadie's therapies and appointments.  I just started a list in the back of important phone numbers too.  It's sufficient to keep us on the right track.

10.  Try at least 3 new recipes each month.  I've been planning a menu a month at a time.  It was working well until it wasn't.  I think the last 2 weeks of February I completely changed.  Oh well.  I'll maybe try planning a couple weeks at a time for March.  Anyway, we tried some new things in January and February... Mexican lasagna in the crockpot (it was okay), some different casseroles: one with black eyed peas, and a couple with quinoa, and some different soups: cream of tomato, cauliflower cheese, and potato leeks.  Also, in my quest for the perfect homemade veggie burger, I made sweet potato quinoa burgers.  They were good, but not perfect.  However, on that journey, I've found the perfect hamburger bun recipe.  And a chickpea pot pie!! ...not a success.

11. Keep a Housekeeping schedule.  I've given up on this.  I'm hiring a housekeeper.  I just can't keep up, and soon Ezra will be crawling and I am grossed out at the idea of what he might put in his mouth that he finds on the floor.  It's worth it to me to pay someone.

12. Budget.  We're doing pretty well with this!  We've managed to actually put away some money in savings in January and February, so I feel like we're back on the right track!

13. Write my kids monthly letters.  Sadie had a birthday in January, I didn't write her in February.  Here's Ezra's for January and February.  The reason I got out the boxes with the family pictures in them and opened them is because that's where Sadie's baby book is.  I've decided to take these letters, write them on paper and include them in their baby books.  Also, I have decided to only write monthly for the first year (I wish I had done this with Sadie), and then every year on their birthdays thereafter...and when the mood strikes me.

So there you go!  I think I'm doing well considering it's only March.  At least I'm working on them and not waiting until Thanksgiving and then being like, "oh yeah, I wanted to accomplish some things this year!"  I'd love to hear how your year is going!

It's been a while - part 2: Endocrinology

I don't remember if I ever got to write about Sadie's precocious puberty.  Yes, her brain was starting to release hormones that started puberty WHEN SHE WAS 2 YEARS OLD!!  What a mess.  Basically I noticed that she was starting to grow boobs.  I didn't even think about how big she was getting so fast.  I thought I was pregnant and I was getting weaker, so she just FELT heavier.  Nope, she's huge.  We completely skipped size 3 clothes.  She literally went from size 2 to size 4.  She even wears some size 5s and has a few things that are 6-7!!  Not to mention the diapers she no longer fit into!

When I mentioned something to Dr. Wendy, she sent a referral to Endocrinology where Dr. Oleson confirmed that that is not uncommon.  Apparently, when children suffer brain damage, it effects the pituitary gland, which is where all your hormones are secreted, which can mess up the timing on puberty.  Everybody just kept telling me it happens all the time in children like Sadie, like that was going to make it better.  It didn't.

Anyway, we X-rayed her wrist where her growth plate is (apparently it's indicating that she's 5), did some blood tests, and even had an MRI to check her pituitary gland (and to make sure there wasn't a tumor) and then it was determined that she needs to start a new medicine called Lupron.  It's an injection she gets every 3 months.  The goal is to suppress the hormones and stop the puberty and the growing, and she has to take it until we want puberty to actually start...so for like 10 years.

Yesterday was her first injection.  

We had to order this medicine from a special pharmacy and they sent it to us in the mail.  It came in this crazy big box (think 4 shoes boxes stacked together) and all it was was a tiny plastic container, about the size of a DVD case.  We brought it with us to the doctor's office and the nurse gave her a shot in her leg.  She didn't even cry.  She is amazing.

This whole situation is just annoying to me.  I'm annoyed we have to see another doctor, I'm annoyed that Sadie is so huge.  I'm annoyed that she has acne and boobs and has even started to get another set of molars!!!  I'm annoyed that we have to give her shots, and that they won't bill her secondary insurance, so every 3 months (for the next 10 years) I have to submit a reimbursement form to ACCCHS.

Usually, when it comes to Sadie, I am sad, or I am grateful that we found and fixed the problem, but this time I'm just annoyed.  The whole thing is just so inconvenient.

...just one more thing they don't tell you could happen when you bring home your brain damaged child from the hospital!

Anna's 30th birthday

Dear Anna,

Today you are 30, and we've now been friends for 10 years.  It's hard to believe it's been that long.  We've gone from silly girls wondering about our futures to heartbroken and joyful moms.  I have watched you literally grow up in the 10 years I've known you.

When I met you our biggest drama was a roommate who wanted "justice." 10 years later we've been through miscarriages, and birth trauma, healthy babies, and true love.  I am so proud to call you my friend.  You are strong and you shine and you are so very talented.

I remember your wedding.  It was so hot.  You were so beautiful.  I was so impressed with Jeremy.  Then, you were in my wedding.  And it was so hot.  And you were pregnant.

We have cried a lot of tears together.  We have definitely had a lot of laughs together.  We've had babies.  We've gained weight.  We've lost weight.  We've gone on road trips and plane trips and roller coasters.  We've even been through customs disasters after natural disasters and international collect calls from payphones in airports!!  And even though we've changed a lot... we're still so much the same.

Now your life is filled with a bunch of little men.  And they are so cute.  They are so full of energy and personality.  And they love you so much.  You and Jeremy are teaching them to be honorable and to live life with integrity.  I can't wait to see how they grow up.

I don't get to talk to you very often, I see you even less often.  But I still love you so so much.  I wish we lived closer to one another.  I remember when your bedroom was just on the other side of the wall from me.  Now you are 2 states away.

I love you and am proud of how strong you are.  I love your family.  You have a wonderful husband and 3 amazing children.

I can't wait to know you for another 10 years.  Happy 30th birthday.  I hope that it's wonderful and spectacular and everything you dreamed it'd be.

Love,
Christie

PS. Someday when our children are grown up and moved out (well, except for Sadie, maybe) and our husbands are just grumpy old men, let's still be silly.

Like this!!

Dear Ezra - February 2013

Dear Ezra,

It's hard to believe that just over 4 months ago I was still pregnant with you in my belly.  You haven't even been outside my belly as long as you were inside yet!  It's crazy that sometimes it feels like time is going so fast...and sometimes it feels like it's going so slowly!

When we went to your well-check appointment last week, the doctor said she thought she felt a tooth starting to come in!!  This might explain why you're drooling so much and always have your hands in your mouth.  It's crazy to think that you might have teeth soon when your sister didn't get her first tooth until her first birthday.  It's also terrifying because of how hard it was for Sadie to get teeth.  I hope you don't have as hard of a time as she did.  The doctor said she expects to see teeth in your mouth at your 6 month appointment!

I think you're going to be good with words when you grow up.  You love books and you love to "talk."  You seem to be very good at communicating...or maybe, because of your sister and her limitations, I'm just really good at understanding baby talk!  I can tell you love Sadie too.  Today you guys watched Care Bears together and both of you just talked and talked through the movie.  It's okay to like Care Bears, even though Daddy says you should be watching GI Joes.

You're starting to discover toys and how to play with them.  It's so funny to watch you lay under your toy bar and shake shake shake the rattles that are hanging down over you.  You get so excited when you're down there that you wiggle all around.  Sometimes you scoot yourself off the mat and onto the carpet.  Sometimes you spin yourself all the way around so you're facing the other direction.  A few days ago you learned how to roll yourself onto your tummy.  However, you quickly figured out that that wasn't as much fun as being on your back!

I can't believe how cute you are.  I love your little dimples when you smile.  And I love your chubby fat legs.  You look at me when I say your name and it's amazing to see the love for me in your eyes. You are going to be such a loving and cuddly boy, I can tell.  And you are going to be curious, and maybe even a little destructive.  I am sure you're going to be a good talker, and once you start, I doubt you'll ever stop.  You already love the sound of your own voice so much.

I love you so much and I am terrified, and so excited to see who you become as you grow up.  This is what you look like right now...

I know, the chair is pink, but we were at an appointment for Sadie and that's the only one they had.  This picture proves, you're gonna be a lady killer.

Love, Mama

It's been a while - part 1: GI update

It's been a while.

Here's the thing... apparently it's expensive to have a baby at the hospital!!  The bills just kept trickling in.  And because I work part time, I didn't have a pay check for 6 weeks because I didn't qualify for paid FMLA leave.  So, when my computer broke and the Apple Store told me it would cost $300 to send it away blah blah blah, I had to wait because we couldn't afford it.  And we couldn't take the baby back and get a refund.  And blogging from the ipad sucks.  And I can't include any pictures.

But now I'm back, and boy is there a lot to update you on!!  First up, GI.

Sadie had 8 appointments in January.  Plus movement therapy.  Plus a trip to the zoo.  Plus a stay at Ryan House and a birthday party.  We were pretty busy!  I'll get to everything eventually, but this post is strictly about our new GI adventure.

The day Sadie had her GI appointment was also the day of her 3-year well check.  Chelsea came with me because the idea of carting 2 kids around the Children's hospital (PCH) for 3+ hours caused me to get a little sweaty (I sweat when I'm stressed out).  In case you've forgotten, Chelsea is our respite provider.  I like to refer to her as Sadie's best friend.  Plus, I hate going to GI appointments, they are stressful enough as it is.  I was dreading it and I told Chelsea this.  She didn't get it until it was over and we were leaving.  If she had had a soapbox, she would have been on it ranting about that GI appointment for at least an hour!

First off, the weight check meant nothing.  Because Sadie has been experiencing precocious puberty (yes, she's 3 and she's starting puberty...more on that later), she's been growing like crazy.  We completely skipped size 3 clothing.  We literally went from size 2 to size 4 and 5 in like 3 months.  Therefore, of course she weighs more than the last time we saw the GI doctor!!  But in case you're wondering, Sadie weighs 37 pounds (yes, you read that right).

Then came the barrage of questions from the nutritionist.  I thought I came prepared, but she always asks me something I don't know and makes me look stupid.  This time it was about calories in the coconut milk.  I get so flustered and nervous when I have to remember something like this off the top of my head, especially when my ability to be a good mother is in question (I doubt it really is, but it feels that way), that I think I changed my answer about this 3 or 4 times!  Chelsea told me she felt bad for me, she felt like they were ganging up on me.  She said it felt like it was 2 against 1.

The good news is that what we're feeding Sadie is acceptable.  Although, it was determined that because I'm giving her coconut milk from a can, which is used primarily for cooking (and has 140 calories per 1/3 cup, by the way), they are not required to fortify it with calcium.  The dairy milk wasn't agreeing with Sadie, and we don't do soy, so rice milk fortified with calcium was what was suggested.  I'll save my comments about A. fortifying food with chemicals vitamins, and B. how much of a calorie cut that would mean for us for another time when they can be more helpful.

The bad news is that she still has reflux.  I asked the doctor about a Nissen Fundoplication procedure.  This basically is where they tie off the bottom of her esophagus so that food can still get down, but nothing can come up.  It's like a duodenum prosthesis! (ha!)  I am so sick of reflux.  There is puke on every chair Sadie sits in, on her wheelchair, on her car seat, etc.  We carry around rags everywhere we go, and it's embarrassing when she does it in public.  She does it at therapy and it prevents her from being able to be in certain positions that are good for her body.  And it's gross.  And embarrassing.  And gross.  However, our doctor is not a fan of the fundo procedure, and explained also that Sadie is not really a good candidate for it, because she is eating so much by mouth.

I explained that if we could have a minor surgery to solve the reflux problem I would opt for that over medicine and more medicine.  He looked at me like I'm crazy...apparently he doesn't feel the same way.  This is where I gently reminded him that HE'S not the one who A. has to remember to administer the medicine, get the prescription filled, call HIS office multiple times when the prescription needs to be renewed, etc., and B. still has to clean up puke when the medicine doesn't work.

The thing is a fundo can also NOT be helpful.  It can cause Sadie to retch, because stuff CAN'T come up.  Or it can have other side effects.  And I've heard both sides, that it's awesome and been so helpful and the need for meds is gone...and that they wish they'd never done it, it only made things worse, and if they could go back in time, they wouldn't do it.  So, I don't know if it's the answer.  I only know I am sick of the puking.

Instead, the doctor told me he'd like to see where her food is going and how quickly she's digesting.  He got particular curious when I told him that giving her 8-10oz every 3 hours had GREATLY reduced the reflux (before, we were doing 4-6 oz every 2 hours).  He said that is the opposite of what usually works.  So, he ordered a gastric emptying test.

Monday, President's Day, we went and checked into Radiology for a 2 hour test to watch what happens to Sadie's food after she eats.  They put some kind of radioactive material in her yogurt (not barium), and, after I fed it to her, they strapped her into this big machine and she laid there for 2 hours while they took a movie-Xray of her digestion.  Crazy, right?

Check out these pictures...

Under that warm blanket, Sadie is strapped to the table.  And she was a little too big for the velcros, so she's duct taped too!!  And yes, laying like this for 2 hours right after she ate made for some nice puke-hair.  Lovely.

This is the whole machine.  She was such a good sport.  They turned on some music for her, Ezra slept in the Ergo Baby carrier, and I ate snacks while reading Harry Potter on my phone.

I thought it'd be cool to watch a video of her food digesting.  Boy was I wrong!!  Instead I saw this.  It looked like a cluster of stars or something weird.  It moved every once in a while, but I wasn't able to distinguish anything at all.  Boring.

So, there you have it.  We don't know yet the results of this test, or really what the doctor is going to say about those results...I imagine he'll suggest more medicine, which is exactly what I DON'T want.  But, whatever.  I will give her medicine if it stops the puking/erping/reflux.

Just stop the reflux.  Please!!

Dear Ezra - January 2013

Dear Ezra,

You are now 3 months old, yet, I can't remember a time when you weren't a part of our family.  You are amazing.  Daddy and I marvel daily at the progress of your development.  We watch you do things we've never realized babies can do, and we rejoice with you when you learn something new.

Recently you've decided that you don't need to be swaddled at night, but that you can fall asleep on your own.  You're such a big boy. 

And you use your hands more and more now.  You hold on when you're being carried, and you grab the toys hanging down when you're laying on your toy mat.  And now you've started pulling on my clothes when you want to nurse.  You are so smart.

We love to hear your voice.  I can tell you're practicing to be a singer when you grow up.  You squeal and talk baby talk and blow raspberries all day long.  Someday I'll probably be annoyed that you won't be quiet, but not yet.

Sometimes we play this game where I bounce you and shake you on my lap and you giggle and laugh with a big open mouth like it's the greatest thing you've ever experienced.  Daddy tries to do it on his lap, but it's just not the same.  You don't giggle for him (I think he's a little jealous).  You are Mama's boy and don't you ever let anyone tell you that's a bad thing, or make fun of you for it.

You will forever be my boy.  I love you so much.

Love, Mama

Sadie's third birthday

Dear Sadie,

Today you turn 3. Today is a big deal, because, not only is it the anniversary of your birth, but it is the anniversary of the day I became a mom. You are my first born child and you will always have a special place in my heart that is different than your siblings. I loved you before I knew you. I wanted to keep you when they told me I was going to lose you. And I am a stronger person for who you have demanded that I become.

You will always need me, more than most children need their mommies. And I will forever take care of you, speak for you, feed you and dress you, and fight for you. Before I had you I didn't know how to fight for something the way I do now. Because of you I have big, bulging mommy muscles. Because of you I have amazing friends. Because of you I have an appreciation for life and beauty like never before. Because of you I realize which things are silly to stress over or be sad about. Because of you, I am mom.

Sadie, today you're 3! You are growing up and learning more and more each day. You have ideas and opinions in that head of yours, and anybody who knows you knows how sassy and demanding you can be. You have turned into such a happy little girl. Even your teachers at school tell me all the time how happy you are. There was a time when I thought you'd never stop screaming, but now you never stop smiling.

You go to school now and your teachers are so proud of you and so impressed with everything you're learning. You play with the other kids in your class and even share toys with them. You are learning to communicate what you want, and you are learning to sit and use your hands to touch something or play with something. You are an amazing little person who is learning to overcome so much just to do basic things.

You are beautiful, and I am proud to be your mother. You are so loved, and that will never change.

Happy Birthday!

Love,
Mommy

My original due date

Dear Sadie,

On this day, 3 years ago, I was supposed to have my baby...you.  And I was frustrated because you hadn't come yet.  I went to get my toenails done, hoping that would make me feel better, and maybe start labor.  ANd there was another lady there getting her toenails done, and she had a tiny baby.  She asked me when I was due and I told her, "today."  Then we talked about having a baby and how great it is...and that just made me more eager and anxious to meet you.  I was jealous that she had her baby and mine was still in my tummy.  It wasn't until 2 days later that you finally came out.

And I am going to tell you this story every year on January 17th for the rest of your life.

Love,
Mommy

Sadie's Progress Update

Sadie's teacher sent home a paper in Sadie's folder yesterday.  It's titled, Sadie's Progress Update.  It says that most kids get a formal progress report on their IEP goals this time of year, but since Sadie just started school right after Thanksgiving, she doesn't get one yet.  But, she wanted to make sure I got something because Sadie's been working so hard and she wants to acknowledge it.

The progress update states that Sadie is adjusting to school very well.  She participates in activities and everyday is showing the teachers more and more of what she can do.  The teacher said it is obvious that Sadie LOVES school (she even put it in all caps like that in this note).  She comes happy and leaves happy and they can tell that she is pleased with this new daily routine of going to school.

Then she lists some of the things Sadie has been working on.  Things like engaging in play in different positions, using all her skills to communicate, and staying engaged in circle time.  Sadie is working on making choices, and responding appropriately when it is her turn, and participating positively.

Sadie's teacher says she is pleased to see Sadie doing so well so quickly and she predicts that she will continue making progress throughout the year.

And at the end, she says she adores having her in her classroom and that she is loved by all.

God bless these people who work with my child daily, as well as those other children in her class.

Special Siblings

There's this video floating around Facebook, maybe you've seen it.  It's about these 2 brothers winning the Sports Kids of the Year award.  One boy is 9, and he does triathlons while towing his younger brother who has CP.  This isn't a new concept, racing while towing someone disabled, but this is the first time I've seen it be siblings...siblings under 10 years old.

And in the interview the older brother just talks about how much his brother loves to ride in the cart while they race.  He says, "if people raced more with people who can't walk or talk or have autism, it might open the eyes of those who don't really care about it."  It's all about him and his brother, it's never just him.  He says, "we can always do anything."

This video got me thinking about siblings.  Well, I think about siblings a lot, but it inspired me to write something about siblings.  It's special to have a brother or a sister, especially one who is disabled.  I think the kids who have disabled siblings are wired differently.  They are brought up to care more, to see things differently, to be more patient, and to want to help change the world.  They want to make the world a better place for their disabled brother or sister.

I will never forget this summer when I parked and was getting Sadie out of the car.  We were going to go have PT in the pool.  And there was a man who was some kind of city worker or a cable guy or something parked next to us.  He must have just been enjoying his lunch break in his van somewhere in the shade.  He watched me haul Sadie out of my little Volkswagen, and he rolled down the window to tell me that I was doing a great job.  He told me he had a sister like Sadie when he was younger.  She had passed away when she was 17.  Then he got this twinkle in his eye when he told me that he just remembers how much his mom loved her and was so good to her.  He was probably in his 40s, but he had fond memories of his sister and the love in his home when he was younger.

I think about this guy a lot.  I try to imagine what Ezra will be like when he's an adult.  Will he someday see a mom getting her disabled child out of the car?  Will he see a child in a wheelchair at a restaurant?  Will he open the door for a mom who is struggling to push her grocery cart and push her child in a wheelchair?  And will he speak fondly of growing up with his sister?  Will he connect with that mom by telling her about his mom?  I really want Ezra to grow up compassionate and patient and accepting of people of all abilities.

I have a friend whose daughter has mitochondrial disease.  Her daughter is in a wheelchair and has limited abilities for movement and communication.  She can talk, but it's slow and hard to understand.  She's tube fed and not potty trained.  And she has a younger brother.  This friend of mine told a story on Facebook recently of how her son wanted a penny for the wishing fountain, and after he threw it in and made his wish, he told his mom that he wished for his sister to not have mitochondrial disease.  He said he can't wait for it to come true.  THAT was what he wished for.  Not for a new Wii or a special toy for himself, but for his sister to be well and not struggle. 

I have no words, but that I hope and pray that my boy grows up to be like that one.

I have another friend whose daughter is a couple of years older than her brother with special needs.  He is undiagnosed, but is nonverbal, has some CP, and can generally be hard to handle because of aggressive behaviors.  But his sister, she loves him so much.  She goes with her mom when they take him out in public and she helps manage him so their mom doesn't have to do it alone.  And she's getting old enough now that she will stay home alone with him.  She even had her most recent portraits taken wearing a t-shirt exclaiming that she is a PROUD sister of a child with special needs.  How many 11 or 12-year-old girls are proud to push their screaming 9-year-old brother around the mall with everybody staring at her?  She is something special.

I can only hope that Ezra, and our third child in the future, end up like these siblings.  As parents of special needs children, we talk about how amazing our children are.  They overcome so much, and struggle daily with things we can only imagine.  We are proud of them, they do so much.  And yet, it's our typical children who shine especially bright.  I can already tell that Ezra love his sister.  I only hope that that love grows bigger and bigger as they get older.  Maybe they'll even win an award someday.

And in case you want to see that video about Caden and Conner Long, you can click here.

She's My Child

I'm going through another one of those rough patches in my grieving.  Do you ever stop grieving for what you've lost?  Or does it just come in waves?  Lately, I've been thinking a lot about what our life might be like if Sadie had been born typical.  I think it's because I have Ezra now and my vision is clearer, my eyes have been opened to the world of a typically developing child.  And it's not like I love Sadie any less, but I wish she could play with her brother, and I wish she could run around the house squealing and singing songs, and I wish I could look at her and wonder who she's going to marry someday and how many children she'll have.  You see, these are the things I wonder when I look at Ezra.

This morning we went for a walk as a family and I told Brian that now that we have Ezra, I can see what our life might have been like if Sadie wasn't the way she is.  I told him that I feel almost like we have MUCH MORE this way.  I don't know if I'd have a job that I love so much working from home.  And I don't know if we'd be living in a new house at all, let alone this house in this neighborhood that I am really growing fond of.  And I know for sure that some of the most treasured and special people in my life wouldn't even exist.

Sadie is such a pretty and happy and sweet child.  She is so amazing in all that she does.  But I fear for her.  I fear that her bones are developing incorrectly, and that her muscles are atrophying, and that my lack of consistency with patching her eye and putting on her glasses is going to result in surgery.  I worry a lot over this little child of mine, and I wonder if it's more than I would if she were normal.  But the thing is, when she looks at me with that smile, when she hears my voice and reacts, when I can make her giggle, none of it matters.  Because she's my child and I would do anything for her, I would do everything for her.  I DO do everything for her.  And at the end of the day, none of the what-ifs matter, because this is the family God has blessed me with, and this is the family that I love and that I serve.

This video has been passed around Facebook this weekend.  I started crying when she sang the first line.  I think it's just what my heart needed reminding.  It's all worthwhile when it's my child.

Baker's Dozen Check in - 1 month

Happy New Year to everyone!  I hope that your night was safe and fun.  I chose to put grumpy and tired Sadie to bed early, then go to bed with Ezra.  I was out before 9:00 I'm sure!  I was so tired.

So, it's a new year and time for a fresh start for so many people.  I, however, started my new year's goals in December... remember?  So, time for a check in to see how I'm doing so far... (I know, it's only been a month, but it's accountability, right?)

1. Build the bookshelf.  Not anywhere close on this. However, I've THOUGHT about emailing the dimensions to the person I want to build it.  Mostly, this one's about money, it might have to wait a couple more months.

2. Finish knitting sweater.  I'm proud to say that I added 4 rows this week.

3. Paint Sadie's room.  I'm waiting for Grammy to finish her big-girl quilt.  Then I want to add her new changing table (that will be unfinished wood).  Then I think I know what I'm gonna do...big, wide, vertical stripes on the wall where the bed is.  One will be real pale pink, the other a light pink.  Then I'll paint the other 3 walls the pale pink.  And I was thinking of painting the changing table with the darker of the pinks...but now I'm considering a bright color from the quilt.  Hmmmm...

4 & 5. Do a triathlon & run 3 charity runs.  Well, I'm working on getting my feet healthy.  I saw the podiatrist a couple of weeks ago, who gave me cortisone shots in BOTH my feet.  I see him again on Thursday and we'll go from there.  The shots did help, so I'm hoping that I'm finally on my way to recovery...now it's about finding the perfect shoe.

6. Put family pictures up.  I got some more of them framed!!  That's a start, right?

7. Make my own pasta/tortillas.  I found a good recipe for tortillas and I feel like I am good enough with my rolling pin to try this before my next check in.  Pasta is still intimidating.

8. Organize Sadie's paperwork.  This is intimidating.  I need to check the Raising Special Kids website to see when their next seminar is.

9. Home Management Binder.  Well, I bought a new planner.  I planned out a menu for the ENTIRE month of January, and I'm keeping therapy notes in the daily squares on the weekly pages.  This leads me to the next 2 goals...

10.  Try at least 3 new recipes each month.  Last month I made eggplant parmesan (this isn't really new, but I don't think I was the one to make it in the past, so I'm counting it).  Then we tried a really yummy lentil stew and a vegtable bake over rice that was really really good!!  I also made some breakfast enchiladas on Christmas morning that were completely my own creation, and I successfully baked my first quiche!!  Not to mention, I also tried some new muffin recipes!

11. Keep a Housekeeping schedule.  I've written down my 2 week rotation and I am doing my best to keep it.  If I get behind (like yesterday, we were out of the house from 9:00-6:00 with therapies and doctor's appointments), I just do my best to catch up...or I just start over and worry about getting to the skipped stuff next time it comes around in the rotation.

12. Budget.  We've had to be pretty strict about this in December because of hospital bills and end of the year bills that we didn't realize we would have.  But we managed to stay under budget for December...even with Christmas!!  Bring it on, January!

13. Write my kids monthly letters.  You can read Ezra's here, and Sadie's here for December.

I feel like I'm doing well so far.  I think the hardest part about year-long goals is being constantly conscious of them.  I wrote them down in my planner/home management binder so I can continually refer to them and remember what they are.  I hope that you have some goals for the new year.  Whether they are big or small or you have lots or just a few, good luck and here's to great things in 2013!!