Feed me

To continue with where I left off on my last post, Emma is eating better and better each day.  So far today, she has eaten a whole scrambled egg.  Two nights ago, she demolished a biscuit just like a normal kid, which is significant not just for her eating and feeding herself, but also because she didn't mind getting her hands dirty.  Here's the evidence:

See those shiny things on top of her eyes that make her look kinda nerdy?  Those are GLASSES.  Yes, her glasses.  She wore them for a pretty decent amount of time that night.

And here's a shot of Lola just waiting for some bites of deliciousness to hit the floor (some of you may have seen this on Facebook):

Emma is sleeping better and better with her mask on in her crib at night.  As for the naps, we're still taking baby steps, but they are definitely steps forward.  God has answered so many people's prayers regarding the naps at Nan's house.  Emma isn't sleeping in the crib at Nan's house, but she IS sleeping on the bed with Nan and with the mask on, and this is definitely a step in the right direction.  The last few days have been wonderful with these naps, and my mom is feeling much more comfortable and at peace with putting the mask on her baby girl.  (By the way, my mom's nickname for me my whole life has been Baby Girl, but I think I've been dethroned.)  Russell and I have tougher skin than our mothers, so on the weekends, we have been putting Emma in the crib for her naps.  Those haven't been pretty - prolonged periods of crying before she finally gives in, and the naps aren't as long...but I'm not discouraged at all.  Some families deal with worse sleeping habits than this with kids who have no medical issues, so I know that the Lord is watching over us. 

My dad managed to condense the Flip camera video that my mom took the other day of Emma eating her roll.  I don't have the time right at the moment to figure out how to save the Flip video to my computer, so hopefully this link will work:

http://sharing.theflip.com/session/7f3da2b754b13f567d268b0d397551a9/video/108324391

The Bee in My Bonnet

You probably remember that last spring I got a real bee in my bonnet about children not being able to receive VitalStim therapy at the hospital due to some stupid financial bureaucracy.  I was on a mission to get the funding or simply an administrative kick in the hiney wherever it was needed in order to provide this therapy to all kids who needed it.  Well, God decided to do it Himself :)  I didn't have to do anything, really, and the hospital now has the electrode expenses in its permanent supply budget, and there is no financial obstacle to getting that therapy to all kids.  However, there IS a personnel availability obstacle.  Emma's speech therapist is the ONLY person certified to perform this therapy, and she has a pretty intense waiting list of kids who need it.  So the next step is to pray for the hospital to shell out the bucks to certify another speech therapist and probably buy another conducting machine (I have no idea what it's actually called, but it seems to be a machine that conducts electricity.). 

During Emma's last therapy, Dru, her therapist, commented that Emma will probably be more of a long-term patient with the VitalStim therapy.  We were kind of expecting that the VitalStim wouldn't correct her swallowing quickly.  Luckily, the hospital's blockades to the treatment have come down, so there's not an issue with continuing the therapy.  Three interesting things have happened with Emma's eating habits.  Actually, let me back up and explain her eating habits first.  Emma's food needs to be relatively smooth, non-grainy, skinless, and dissolve quickly if possible.  She can't drink anything because she chokes on it, and she has ZERO interest in a sippy cup or straw because she has such awful texture issues.  The texture thing is common to all kids with spina bifida, even those whose symptoms are not as severe as Emma's.  Emma doesn't put anything at all in her mouth because of those texture issues, which is great when she's crawling around on the floor....not so great when we're trying to teach her to pick up small pieces of food and feed herself.  That brings me to the 3 "events": (1) At my parents' pool on Saturday morning, Emma suddenly leaned down and started trying to drink the water.  No idea what that was about, but we're going to be talking to her speech therapist about giving her liquids.  (2) Emma was sitting on Mama Jane's lap and out of the blue, reached down, grabbed a piece of artichoke and put it in her mouth.  We grabbed it out of her mouth, mainly out of shock, but also out of concern that she would choke on it.  She has learned what it looks like when we all sit down to eat and that something on a plate is meant to go into her mouth.  (3) This morning my mom set down a fresh roll on her high chair tray, along with small pieces she had torn off for Emma to eat.  Emma picked up the whole roll and starting biting small pieces off of it and chewing them like a big girl.

It's pretty obvious that these milestones are significant for Baby Emma.  But let me tell you why they're so significant to me.  Other moms get to watch their children discover and do things on their own, with no therapy, no training, no encouraging, no prayers for their children to accomplish simple tasks.  Nature just runs its course with other kids.  I have finally been able to watch my daughter take major developmental steps with no prior practice, no therapy...she did these things by herself, out of the blue.  What a blessing to be a mother.

PS - My mom sneakily got her Flip camera out and videoed Emma eating the roll.  If Emma had known she was being filmed, she definitely would have dropped the roll and started waving and making googly eyes at the camera.  I'll try to get a copy of it to post on the blog.

Moving on

It's been 16 days since I last blogged, and quite a lot has happened...and not happened...and is yet to happen.

Here's a change: the "not happened" actually has to do with Emma.  She is still cruising, literally and figuratively.  She has been great sleeping with her mask in her crib at night, mainly because she's too tired to care.  She usually sleeps through the night with it.  Naps are a different story.  With her busy schedule, it's hard to have Emma at home when it's time for a nap, which is never the exact same time every day.  When she IS at home and sleepy enough for a nap, fighting the mask and crying isn't pretty.  But we'll get there.

The "has happened" is about our house.  We have a signed offer on a new house, and it will be inspected next week.  I don't want to spill the beans about where it is or anything yet because we still have to have inspections, a survey, and an appraisal.  But we hope to close sometime during the last half of September.  It's one story for Emma, and there's a good-sized fenced-in back yard for Lola.  The last time we looked at the house, there was a renegade (and rather large) cat sitting in the back yard watching the wildlife.  I'll be having a word with the neighbors about that cat.  I don't have a problem with other people's cats, but I personally don't want a cat.  Neither does Lola.

When we feel comfortable with the inspection and appraisal, we'll take the next step with our townhome.  Here's the "yet to happen:" we're going to lease our home to a wonderful couple who we feel certain will take great care of our house. 

Emma is still a sweet little girl with a lot of love to share, as you can see in this video with our friend, Rob.

I have a lot of catching up to do on last year's posts:

August 5, 2010

August 12, 2010

August 18, 2010

Medical updates

I feel like bullet points tonight.

• Today Emma's VitalStim therapy was cranked up to level 10 (this is significantly higher than it had been, but I don't know at what level it maxes out), and she DIDN'T CRY about it.
• Emma's sleep specialist informed us on Monday that we have to start Emma on strict behavioral sleep training.  This involves Emma being awake, laying her in her crib at 9pm, putting the BiPAP mask on, and leaving her.  Yeah.  Right.
• We have a strict schedule to follow with Emma's sleep training, with varying minutes of leaving her and coming in to comfort her.
• So far, we have not followed the schedule.  Because she hasn't needed it :)  Girlfriend is sleeping like a champ.  We've only done it for one whole night now; night #2 is successful thus far.
• Tomorrow the sleep training applies to naps.  Yikes.
• Emma's choking has gotten better (well, less frequent...severity is the same), but it hasn't gone away.  We are hoping the VitalStim is slowly but surely taking care of this.
• She still refuses to wear her glasses.  With gusto.  And her eyes look terrible at times.
• Emma's knee immobilizers came in, so tomorrow at therapy, we'll see how she does with these little contraptions that force her knees to straighten so that we can start to teach her how to stand.

Ok, enough with the bullets.  Emma is happy, happy, happy.  Russell and I have a new reason to be happy, happy, happy.  We think we may have found a house we like.  We haven't even seen the inside of it yet, only pictures, so I could be completely wrong here.  But the wheels have started turning.  It's a little rough around the edges, but nothing that some one- or two-week projects can't fix.  And since our house is STILL on the market, we are considering leasing our house.  I cannot even tell you how much I DON'T want to lease.  Ever since our house has been on the market since last October, I haven't felt any sense of urgency because I knew that God was taking care of us.  But something feels different now.  My personal plan/what I thought God was going to do was for us to sell our house and then move into another one.  Of course, we all THINK we know what path God will lead us down.  Now...I'm not so sure.  I'm still pretty nervous about possibly renting our house, but judging from the astronomical number of phone calls I've had about renting, maybe this is God's direction for our lives at this point.  What matters in the end is that we trust that He will protect us financially and provide us with a home that is safe for our baby girl.

Save it for Halloween

Several things over Emma's life could be classified as scary - her open incision, all those weeks in the hospital, the constant choking and throwing up...all very scary.  Now it's taken on a new meaning.  One of her favorite things to do now is to scare us.  She yells at us like a monster and we fake being scared.  She gives us varying degrees of laughter in response to our "fear," depending on her mood and energy level.  Tonight was a pretty standard giggle.  I wish I could get a video of her good gut chuckles again.  Here's what I'm talking about - tonight I pretended to read the paper and hide behind it while she yelled at me to scare me.

As I edited this video, Emma heard it and came crawling over.  She laughed at the computer and then started making the scary noises again.  Hilarious.

I also realized that I haven't posted links to last year's posts.  I'll catch up!

July 11, 2010

July 12, 2010

July 17, 2010

July 27, 2010

July 31, 2010

My heart is just exploding with joy right now.  I don't know if I can express it in words.  The joy and love I have for this little girl is so immense, and coupled with an equal amount of praise and gratitude to God for blessing my life with her....well, my heart just feels like it can't hold all that emotion!  My happy, joyful, grateful heart is completely full, crowding my body, crowding my lungs.  I feel like I need to laugh, cry, hug, and snuggle for hours, just to get some emotion out of my body so I can breathe again.  I'm swimming in love for my little girl, love that's all the way over my head....and then I have to go back to work tomorrow morning after a 3-day weekend with my precious one.  But I know that there will be a huge smile and outstretched arms awaiting me when I get home.

Trying to survive

I feel as though my life is in danger.  At the beach last week, Emma was held, not made to wear her glasses, skipped therapy, and wore herself out with all the busy beach and pool activity every day.  My mother is now paying the price.

Emma spent the beginning of the week being whiny about being on the floor at my parents' house, as opposed to being held, as she so often was at the beach.  Two short weeks ago, she reached for the floor at every opportunity because she wanted to crawl and explore.

Emma REFUSES to wear her glasses.  I don't mean waiting 10 seconds before she takes them off...I mean pushing them away as you're bringing them to her face and if you DO manage to make contact with her face, she rips them off on one side while you're still trying to get the other side hooked behind her ear.  It's awful.  And her eyes are starting to turn in more as a result.

Emma skipped 6 therapy sessions last week.  She was miserable at OT and PT on Monday.  She didn't want to do anything, and she wanted to be in my lap or on my shoulder the whole time.

Emma absolutely exhausted my mom and Aunt Eva on Wednesday.  Actually, Tuesday and Wednesday, Emma talked non-stop.  Non.  Stop.  She has had so much to say this week.  And after she got over her desire to be held at the beginning of the week, she's been getting into things even more than she used to while crawling around.

I haven't gotten off scot-free, though.  Emma had terrible nights with her sleep masks (both of them) Saturday through Monday nights.  Finally, we've had a couple of better nights.  Today I spent a moment reminiscing, remembering what it was like to not have to deal with glasses OR a sleep mask.  And having the whole bed to ourselves.  Rewind to November.  Ahhh, now that was nice.  So that reminscing caused me to fast-forward...to what would it be like to have a child WITHOUT special needs.  Now I know that all children are difficult in their own ways, but to simply lay a child down in a crib at night and not see them again until in the morning...wow.  And to not have to worry about how long a child has worn his or her AFO's...has she been in the stander today...how long has she been in the stander...having a week with less than 5 appointments.  One day.  One day I'll have one of those kids.  I do not regret having Emma in any way, nor do I hold any of this against her.  But you have to understand my perspective.  When your first child starts creeping towards 2 years old, you start to think about that second kid.  My experience with just one child makes me think I can't do it.  But I have to remind myself sometimes of how difficult Emma can be, just as reassurance in my capability to have another child one day.

My cousin, Lindsey, forwarded me the daily email devotional that she gets every day, and I want to share some of it with you, in light of what I just wrote about Emma.  The devotional begins talking about a lady who has 4 kids, 2 of whom are twins with cerebral palsy.  Here's what that lady has to say: "although God can heal them, I’ve had to learn to spend my whole life praising Him simply because He is God – whether He heals the girls or not. I decided very early on that God is still God no matter what He allows in my life. I can trust Him even when I can't understand Him."  The devotional also says this: "In every situation, I come to a crossroad and have a choice: I can pout or I can praise. I can turn away from God because I don’t understand or I can turn toward God in full assurance that His understanding is enough for the both of us – even if it hurts – even if anger lingers – even if doubt looms...We can and should choose to bless His name through the pain, which astonishingly can bring His joy into our hearts."

Some days are easier to praise God than others.  I like to think that having God in my heart is what keeps me looking forward to having a less needy child, yet not resenting Emma at all.  I think there are a lot of special needs moms out there who resent their children.  I believe that trusting God and praising Him is what is necessary to value simplicity in other areas of life yet still love your special needs child for everything that she has been, is, and will become.

Back in the saddle

I feel like I've been run over by a Mack truck.  Mack?  Mac?  I don't know.  Whatever.

I don't remember the last time I went on vacation and didn't feel like I needed a vacation after my vacation.  Taking Emma to the beach was so incredibly fun...and so incredibly exhausting.

It turns out that Emma enjoys the ocean, but doesn't enjoy the sand.  Or being on the ground, even on a towel.  Or sitting under a tent on the ground.  Or sitting in her Bumbo.  Or sitting in her own little camping chair.  No, the only thing that will do at the beach is either being in someone's lap or in her stroller.  Even better, having the closest standing person hold all 25 pounds of her.  Maybe next year she'll feel more adventurous.  Walking her in her stroller or holding her in your lap or sitting in the water with her is not all that bad until the heat index gets up to around 105.  But seeing that beautiful blonde-haired, blue-eyed girl basking in the sun, getting a tan on her chubby olive-colored legs, loving on our family, and enjoying her naps on the beach was worth every trip dragging her stroller through that torturous hot sand.  Our nephew Mason could not have been any sweeter to her.  What a little angel he was.  All week long I tried to get him to change Emma's diaper, but he just kept telling me that pirates don't change diapers.  (Apparently, that's a children's book.)  I pray that he will be that sweet to the little sister he'll be getting in December, but his mama isn't so sure.  Ok, enough with the chitter chatter - here are photos of our delightfully fabulous week.

The set-up

Sweet Mason

Loving on Mama Jane

Ahhhh, beach naps

Beach tigers

Mason and Uncle Russ, neither of whom owns a John Deere.  Actually, I think Mason owns an assortment of John Deere paraphernalia

Another delightful nap

Oh, how she loves Daddy...and the pool

Hmmm...wonder how I could get up there...

Mason and Emma were in charge of breakfast

Oh, hi!

Mason the Pirate and Lindsey the Piratess

Russell cackling at the train car that has derailed under him and Emma.  Don't worry, no one was injured.

Where I've been

The beach!

I will post more details and pictures about the beach later, but right now I have something I need to get off my chest.

I subscribe to a great message board for moms of kids with spina bifida.  And the last few days' posts have been filled with pregnant mamas who have just found out that their kids will be born with this awful birth defect.  Confession time: these mamas irritate the fool outta me.  How dare you get so upset...no, not upset, MAD...that your child may have to stay in the hospital for two weeks.  Try three months.  And don't even get me started that you're upset that your little boy might not be capable of having sex.  ARE. YOU. KIDDING. ME.  I just get so frustrated with people who right off the bat don't do any research or attempt to learn anything about the birth defect at all and get so upset about things that are so trivial in the end.  These same people posting these asinine questions are on the SAME MESSAGE BOARD as moms who have questions about catheters, cone enemas (NOT pleasant), surgery after surgery after surgery, permanent breathing tubes, and permanent feeding tubes.

I know that I was somewhat in their shoes at one point, but I guess I'm bitter.  Not because Emma's so bad off, but it's just frustrating to watch my child turn blue every day, choking and fighting for her breath, while simultaneously throwing up.  And there's a mom worried about her child staying in the NICU for 2 weeks.  PLEASE.  Call me insensitive, jaded, rude, whatever.  But there are far worse things.  I just want to say to these women, "Your child does not have Downs!  Your child is not mentally disabled!  Your child can live independently!  Your child will even be able to swim!  Do you not understand how much worse it could be?!"

Sorry for the rant...some days I just can't take it when people aren't grateful for what they have.

OH WAIT.  Speaking of being grateful for what we have.....I think....just maybe....there's a possibility....that the VitalStim Therapy might be working.  Emma has had 5 sessions I think (I've completely lost all sense of time since I've been at the beach), and she has choked a significantly fewer number of times since we've been at the beach.  Maybe it's coincidence, maybe it's the salt air (it would be awful if we had to move the whole family down to the beach, don't you think?), but I'm hoping and praying it's the VitalStim.

One of the Mary's

Back at the very beginning of writing this blog, even before Emma was born, I posted about how we came up with Emma's given name, Emary.  She comes from a long line of Mary's, one of whom is her great-great Aunt Mary on Russell's side.  Aunt Mary passed away on Monday, July 11, and we had all her services today.  Aunt Mary was 87 years old, had been a widow since 1977, and had no children.  Mary Jane and Uncle Robert WERE her children, essentially.  She took good care of her great-niece and great-nephews, and she was a part of Russell's family just like a grandmother would be.  Aunt Mary's health had deteriorated in the last few years and had pretty much gotten to where she couldn't walk or move very much.  Now she is walking in Heaven with her beloved sister, Dot, and her husband.  In fact, Russell's Aunt Kathey said today that she thinks that Granddaddy (Aunt Mary's brother-in-law and Dot's husband) is driving Mama Dot and Aunt Mary around in Heaven, just like he always did here on earth.

Since Aunt Mary is now feeling no pain or sorrow and is walking with Jesus, I think it's only appropriate to post our first video of Emma's first version of walking.  I certainly hope that she will one day walk on this earth...but if she doesn't, she, too, will walk with Aunt Mary in Heaven.

During all our family time today, I got some great shots of Emma with Aunt Kathey and our cousin Chesley.  I especially love that Chesley and Emma are sticking their tongues out at each other.



Welcome to Holland

Some of you may have heard this story before, but I just thought I would share with so many of you who haven't heard it.  I have read this story on many occasions in the last year or so, but I was reminded of it again today.

“Welcome to Holland" By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And here's what my little blonde-haired, blue-eyed Dutch girl has been up to:

"Helping" me blog (by pulling out the contents of my wallet while I type)

Learning to play with Lola.  No one is happier about this than Lola.  Finally, a playmate.

You see me rollin'

Emma got her new stander on Friday!  The one she's had was a loaner, so now she has her permanent stander.  Luckily, I have great insurance, so they covered the cost of the "optional" wheels to make it a mobile stander.  The big wheels on the sides pop off, and they're not necessary for the stander to work.  However, they make it really easy for her to move around once she figures out how to use the wheels.  She was only in it for about 30 minutes Friday morning at therapy before she realized that moving the wheel a little makes HER move.  I believe she will be VERY mobile VERY soon.  Oh, and it's pink :)  At least, as much of it is pink as possible.  It looks kinda red in the pictures, but it's a sassy raspberry pink.

And here's a shot of Emma with her beloved Magee.  Let me tell you something about Magee: she has some sort of quality that I don't think can be named.  Before I had a baby, I just knew that dogs loved her, even my parents' little Maltese who was possessed by some sort of evil doggie spirit.  She somehow knew that Magee was safe and kind.  Then we had Emma.  Because of all of Emma's health issues, she's not familiar with many people outside our immediate family.  Except for Magee.  It's not like Magee and Emma hang out one-on-one all the time, but Emma can just sense that Magee is the best friend, caregiver, and Momma (one day!) that anyone could ask for.  To be perfectly honest, Magee is one of the few non-family members I'm comfortable leaving Emma with - not because I don't trust my friends, but Emma can be a scary kid to care for.  But Magee....you've just got that certain something.

Please keep the family of Jamie Garrett in your prayers.  We are friends with his brother, Scott, and his wife Laura.  Jamie was reported missing in Vail, CO since last Tuesday, and, sadly, rescuers found his body yesterday.  Jamie loved his family and had a great vacation just a few weeks ago with all the Garretts.  He was a wonderful uncle to Scott and Laura's daughters, as evidenced by the pictures on Laura's blog with his nieces.  God, grant his family peace and comfort.

Last thing - a look at last year: July 8, 2010

You've been outsmarted

Our church had our annual 4th of July celebration; here are a couple pictures of our little patriot enjoying herself:

Now, about the title of this blog: I blogged a few weeks ago that my college roommate, Abbey, came to visit for the weekend.  Abbey witnessed firsthand what many of you have only seen on the blog: Emma tossing toy after toy after toy off the tray on her stander.  Emma doesn't get too upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys...that she will promptly throw on the floor....and she doesn't get upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys........you see where this is going.

The other day I came home to a package on the front steps from Amazon.  I thought to myself, oh, that must be something I just ordered.  (I have an addiction to Amazon.  Best prices, free shipping on most baby- and non-baby items with Amazon Mom.  I didn't even realize that I HADN'T ordered something.)  When I opened it, I found a new toy with a note from Aunt Abbey that challenged Emma to throw THIS toy off the stander.  God love her, Aunt Abbey bought Emma a Melissa and Doug toy with (drumroll, please) SUCTION CUPS.  Emma doesn't even attempt to pitch it overboard.

I love Abbey Elaine Diehm Zachar!

Happy New Year!

July 1 is quite possibly one of the most significant days of the year for some people.  First of all, it's my mother-in-law's birthday (Happy birthday again, MJ!).  Second, it was the first birthday that my grandmother spent in heaven - she would have been 101 here on earth.  And finally, it's the first day of a new fiscal year for almost all government entities.  I know this sounds horrendously boring, but both my personal and professional life have been revolving around July 1, 2011.  Work actually gets....not easier.....let's just say less complicated for me after July 1.  I won't bore you with the details.  From a personal standpoint, Emma's allowable therapy hours under Medicaid start over, which means.....VITALSTIM THERAPY IS BACK!

Beginning tomorrow, Thursday, at 3:00, Emma will start her VitalStim speech therapy to try to retrain her throat muscles to swallow correctly.  7 weeks (one week break for the beach) from now, she'll have another swallow study to see if it helped.  In addition to the speech therapy, we're going to try doubling the amount of OT and PT that Emma gets during the week.  She currently receives 45 minutes of simultaneous OT and PT, but now we're going to do 45 minutes each of back-to-back independent OT and PT twice a week.  She will get to have therapy with her new boyfriend, Chris, her all-time favorite therapist, once a week.  Last Friday, Chris stopped by briefly to say hi to Emma at therapy.  She pushed away from the therapist who was holding her and made an army-crawl bee line to Chris.  Let's just hope he can get some good work out of her!

Emma held out until 10:00 Monday night at our church's Fourth of July celebration because there was no way she was going to sleep with all those people everywhere.  Of course, the moment her head hit the car seat, she was out.  Literally, out like a light in the parking lot.  The last couple of days she has been a little booger for my mom, fighting sleep and just being nosy.  Oh, and she wore herself out swimming in Mama Jane and Granddaddy's pool on Sunday.  I anticipate that either tomorrow or Friday she will collapse and pull a Rip Van Winkle on us.

An entry from last year:

July 5, 2010

Hooray for a long (too busy) weekend!

First of all, June 30, 2010

Before I take off on many, many Fourth of July weekend adventures, I'll throw up a picture of Emma - a rare moment of happiness at therapy.

Happy Fourth of July, everyone!  Really, truly - God.  Bless.  America.  We need it.

Just trying to stay cool

It's been over a week since I last blogged, but not much has happened since then.  We've just been trying to stay cool and keep Emma cool.  She's a REALLY hot-natured baby, so she doesn't mind the pool at my parents' neighborhood at all.  She enjoys it most when we take her out of her float and hold her in the water ourselves - then she can really splash it up.

Emma had therapy last week as usual, but with one major change - a man.  The Care Center had to rearrange some of the therapists' schedules for the week because a couple of them were on vacation.  That resulted in a little bit of a mixup for Emma's OT and PT, but it turned out to be a beautiful thing.  We had Emma there for PT at 9:15, and she was a little fussy...but not as bad as she usually is.  Forty-five minutes later, she was much calmer for Chris, her OT for the day.  The next 45 minutes were complete bliss as she and Chris "played" quietly.  Emma didn't fuss once, and...dare I say it...she enjoyed herself!  Emma has always preferred men...and I mean, ALWAYS.  It seems that therapy is no exception.  We've had a really hard time getting Emma to behave/work during therapy because she gets cranky and just plain doesn't want to work.  My mom said she did ok, but not great, yesterday with her regular therapists, but it was nothing compared to her new boyfriend, Chris.  (Chris DID try to tell Emma that he's married, but she didn't care.  Little homewrecker.)  I'm very afraid we're going to have to make some changes in order to allow Emma to get the most out of therapy, but it makes me very sad.  We like her OT a lot; if only Emma would work for her like she did Chris.

After Emma was done with therapy on Friday morning, I made a game out of pretending to toss her in the ball pit and then finally set her in it.  The ball pit is used to help kids find and maintain their balance and also to develop the motor skills to catch and throw the balls.  I didn't want to traumatize her, so I took her out after only a few minutes.  Emma immediately wanted back in, and I grabbbed these shots:

If I hadn't had an appointment to get to, we would have stayed even longer and let Emma play.  Maybe this Friday...

A look back at this week last year:

June 26, 2010

June 28, 2010

Do you ever have those days/weeks/whatever-period-of-time when you just feel blessed?  I'm going through that right now, and it's wonderful.  I'm stressed, and my summer work schedule doesn't allow me to do anything that I really want/need to WHEN I want to do it, our house hasn't sold, we don't have a house we want to move into, I wish Emma would stop choking, etc, etc, etc....but I just feel so loved.  I feel surrounded by God's love.

This past Sunday's sermon was basically about joy vs. happiness.  A light bulb came on in the middle of the sermon when I realized that Emma is proof of the Spirit living in us.  Happiness is fleeting and temporary; joy is deeper and permanent and can only truly be found in the Lord.  Children Emma's age are too young to knowingly seek the joy of the Lord, much less know the difference between happiness and joy.  If true joy was fleeting like a temporary state of happiness is, Emma would not smile at us in the midst of choking, gasping for air, and even spitting up.  That is an underlying sense of joy that can only be attributed to the Lord.  I call Emma a happy baby all the time because she's so personable and loves to be out in public behaving herself yet being nosy at restaurants and shops.  But she's not happy...she's joyful.  I know the Holy Spirit is with her because of her permanent state of joy despite all her struggles.  (Side note: our church's nursery workers probably don't believe a word of this, but I promise she will be joyful in the nursery one day.  Soon?  Probably not.  But one day.)

A water baby

Before I move on, here's a bit from last year:

June 21, 2010

Russell loves all water - the pool, the lake, waterparks, the beach...well, the ocean at least.  He's not so crazy about all the sand getting all over everything.  Let's just say, like father, like daughter.  When we took Emma to the beach for spring break, she did NOT like the sand on her hands.  Not.  At.  All.  Emma has now also been to the pool 4 times: twice at the beach, twice at Nan and Granddad's neighborhood pool.  She has enjoyed it all 4 times and is getting more and more comfortable with splashing in the pool and splashing in her bath.  With every bath, she gets a little more adventurous with the water.  She doesn't mind getting it in her eyes or on her face.  Then the training wheels came off while getting a bath at Nan and Granddad's after going to the pool on Sunday afternoon - she went buck wild.  Another one of my mommy warnings: this could be boring to some of you.  I think it's cute, and it's my blog.

Good news and bad news

Yesterday we went to see Dr. Troup to get the results of Emma's MRI's.  It has been a year since she last had MRI's of her brain and spine.  It's been a long time because we weren't sure how Emma would handle a breathing tube during the procedure.  So let me start with that.  Yesterday's conclusion: she does fine with the breathing tube and she is, at least for now, out of the respiratory/pulmonary woods.  A year ago, we weren't sure what was going on with her breathing.  Over time, we determined that it was more of a throat issue, as opposed to lungs and brain, at least when she was awake.  Now we are still dealing with throat issues.  Next point.

The bad news: Emma's MRI's still look bad.  The good news: Emma's MRI's still look bad, emphasis on the word STILL.  Emma's compressed brain stem, low spinal fluid flow, and huge cyst in her spine haven't changed, but Emma has...she is army crawling, pushing with her legs, waving her arms everywhere, and basically doing everything that these clinical issues should prevent her from doing.  So that's great news!  For the time being, we're not going to do anything about it.  Emma's brain decompression is very dangerous, and Dr. Troup says there's a 50/50 chance that the surgery may or may not help right now.  She will have to have this surgery eventually we think, but for now it's just more wait and see.

Today we went to see Dr. Morales, Emma's newest doctor.  He's the neurologist who looked at her EEG.  Emma is not having any type of epileptic episodes that would be causing her left foot and leg twitching.  His best guess is that the twitching is caused by issues on her spine, which we kind of anticipated.  The cyst on Emma's spine runs the entire length of the longest section of her spine.  It would make sense that the cyst's pressure on her spinal cord could be causing the twitching...but no neurosurgeon or neurologist can ever be absolutely sure about it.  Whenever Emma has the Chiari decompression surgery, she'll also have a procedure done to drain the cyst, so that's when we'd really be able to tell if the cyst is causing any kind of issues for Emma.

It's been over a week since I last blogged, so I have some catching up to do from last year:

June 9, 2010

June 13, 2010

June 16, 2010

June 17, 2010

Tonight Emma was rolling and army crawling all over the den like she normally does, and in a just a few minutes did this with the Kleenex box:

That's cold!

TCBY is one of our family favorites.  Emma and her entourage go there frequently as well, and Emma really enjoys frozen yogurt.  We have a delicious quart of vanilla fro-yo in our fridge that we're slowly hacking away at, and tonight Emma gave us her little sign that means she wants to eat.  And this is what happened when that cold yogurt touched her lips:

I know it looks like she didn't like it, but that's just the funny cold face.  She kept coming back for more.

Surprise!

I love surprises.  When people say they hate surprises, I really, truly, deep down judge them and believe that they are not human.  Ok, maybe not that extreme, but close.  I apologize if this is you...but I just don't know how you can't love surprises.  And I love being the orchestrator of surprises just as much as, if not more than, receiving them.  So when my friend/neighbor/college roommate, Holly's, birthday was looming, I couldn't help but get the wheels turning on a devious surprise for her birthday.

During my junior and senior years of college, I lived with three other girls in apartments at Furman.  Holly and Abbey were two of those roommates for both years.  We now know that a handful of our OTHER friends at that time were skeptical of the three of us living together.  We are all three very different, yet all very strong-willed individuals.  I honestly think that some people who ran in our circle of friends were a little afraid that Furman Housing would be cleaning up the tragic remains of an apartment that had fallen victim to end-all be-all of girl fights.  Wrong.

Fast forward x number of years.  (We're all 30 now, let's leave it at that.  Some numbers are upsetting to someone who thinks she graduated from high school "just a few years ago.")  I orchestrated a surprise visit from Abbey this past weekend for Holly's birthday.  Of the three of us, Abbey is the most inaccessible for a couple reasons: she has a 3-year-old and an 18-month-old (the latter of which is becoming more and more hell on wheels with each passing day), and she lives in Jacksonville.  I don't blame her for being physically inaccessible.  If I were in her shoes, my friends would seriously begin to wonder if Russell had dumped my body somewhere.  Abbey keeps in touch via blog, email, text, etc. much better than I would.  ANYWAY, the timing was just perfect, and Abbey drove up to Greenville on Saturday.  Holly and her husband met me, Russell, and Emma at dinner...and SURPRISE!! 

We all had such a delightful time with Abbey this weekend, and Abbey is Emma's new best friend.  Seriously.  She fell in love with Abbey...and why wouldn't she?  When my mom came to pick up Emma Monday morning, Abbey was still at our house.  My mom and Emma were loving on each other as they always do on Monday mornings after a weekend away from each other when Emma turned away from my mom and reached for Abbey.  Dogs and babies have a sixth sense about who the good people are.  And Lola loved Abbey, too.

Emma was feeling much more like herself this weekend, and she slept much better with her new BiPAP mask.  However, the mask is very prone to leaking because the part that covers her nose is just too big.  So last night we went back to the old mask because the little knot on her forehead had gone down.  I think we're going to have to alternate masks from now on.  Sigh.  Nothing's easy.

A look back at last year:  June 6, 2010

I leave you with a video of Emma cracking up with me fake-dropping and actually dropping the pendant on my necklace.  I knew that if I broke it, it wouldn't matter - it was worth the gut chuckles.  Emma laughs like adults do when they get REALLY tickled - you know, the laughs that are so intense that you don't even make any noise.  So make sure you turn up your sound.

Who needs a routine?

I both love and hate routines, for the reasons you'd probably expect.  As an uptight accountant, I need order, structure, sequence, accomplishment, lists, and items checked off those lists.  (This is why I hate laundry:  you finish a load, check.  And within hours you're no longer finished with the laundry; it has started all over with the first dirty sock.  But I digress...)  But as a person who also loves spontaneity (within reason), I need a shakeup - a routine gets old, boring, tired, lifeless.  Boy, did we detour off the beaten path this week.  I'll pick up from the last blog entry about the first MAJOR detour, Emma's MRI.  And the week only got more interesting.

Detour #1: Emma woke up coughing, hacking, sniffling, and choking on Thursday morning.  I stayed home from work for the morning and took her to the doctor, where we found out that she had an ear infection (first one!), in addition to some major teething, congestion from a cold or sinus infection and a sore scratchy throat from the breathing tube.  The doctor said that once Emma got some Children's Advil and her antibiotic, she'd start acting like herself again.  I don't know what she was talking about because was in a fantastic mood all day.

Detour #2: For about the last week, Emma hasn't been sleeping well with her BiPAP mask.  It has a pressure point pad on her forehead that has left a knot that won't go away.  We thought it probably hurt her, but you can't loosen the mask because air leaks out.  So we got a new mask on Wednesday.  Disaster.  More sleepless nights, more crying.  Emma's doctor on Thursday said that the air blowing through her nose probably hurts her infected ear.

Detour #3: Since Russell and Emma were both now sick, I slept on the couch Thursday night, hoping to get a little more sleep.  Wrong.  The sound of a crying baby in the night travels faster than the speed of light and louder than a sonic boom.

Detour #4: I worked until 6:30 Friday night, trying to get something accomplished since I was out more than I worked this week.  This was the first of 11 weeks working 4 long days and off one day.  I used to enjoy these summer hours, but I learned last summer that this schedule is not conducive to being a mommy.

Detour #5: Emma started acting like she felt bad on Friday - no whining or fussing (blessing!) but just lethargic.  That has carried forward to this morning.

Detour #6: Emma hasn't been able to get baby food down without choking and spitting up mucus.  Until FRIDAY NIGHT!  Emma has started feeding herself very well, and whenever she sees someone eating and feels like trying it out herself, she puts her hands together in sign language to signify "more."  Not quite the correct sign to indicate she wants to start eating, but we know what it means, as does she - and that's what matters.  So she crawled up to Russell Friday night as he was eating some toast, and did the sign for "more." She cried until Russell could get another piece toasted for her, and then she devoured some toast like she had been eating normally all week.  This morning she did really well with her baby food.

Detour #7: Emma slept with her new mask on like a champ last night.  Sort of.  She didn't cry, at least.  She woke up at 2:00 am trying to get comfortable and tossed and turned for an hour without crying even one little tear.  We turned the light on and realized that she couldn't breathe because her nose was congested, but she also had a throat and mouth full of saliva and mucus.  Poor little girl.  We took the mask off and let her sleep without it once we got her all cleaned up and suctioned out.  Emma went right back to sleep, and we all slept until 7:00.  So. thankful.

Emma still isn't feeling great today, and we thought she had been fighting sleep all morning.  Fighting sleep is nothing out of the ordinary, but she's actually TRYING to go to sleep, but something just isn't letting her.  We're not quite sure what's bothering her, but we hope she'll get a restful nap soon because we're taking her out to eat tonight.  Despite all her illnesses and issues, she still manages a beautiful little smile, complete with bed head and some baby food smears on her lips.  Bless her, her eyes even look tired.

It's been a while since I've posted the links to last year.  Here's what I've missed:

May 26, 2010

May 28, 2010

May 30, 2010

June 1, 2010

June 3, 2010

It hurts my heart to look back at where we were this time last year, but I just have to look forward.  Looking back on all that Emma has been through is no way to go through life.  God truly has blessed us this far, and I have to trust that He will continue to do so.