Friday, March 29, 2013

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 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.


PS. This is what you look like at 5 months

Headed to your first baseball game with Daddy!

Monday, March 25, 2013

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.

Sunday, March 17, 2013

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.

Monday, March 4, 2013

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.

Sunday, March 3, 2013

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!

Friday, March 1, 2013

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!