For once

For once, I feel like spring has not passed us by.  By "us," I mean the South.  Now, granted, that also means that some vicious tornadoes came through and heartbreakingly tore apart some cities and families.  As for here in Greenville, we have had some amazing spring weather without all the scary and sad stuff.  Today the Young family has been taking advantage of the beautiful day and getting lots accomplished.  We helped out with Hands on Greenville this morning and volunteered with Russell's company doing some yardwork at a nursing home in Easley.  They didn't have a lot for us to do, so we have been catching up on all kinds of other stuff.  Russell has laid out new grass seed in our back yard while I have been doing odds and ends of things inside.  With the windows open.  Gorgeous.  Lola and Emma love to have the windows open, too.

Emma has a swallow study coming up this Thursday so that we have a benchmark for her swallowing ability before she begins her VitalStim therapy.  That therapy will start week after next.  I'm really excited about it, and we need desperate prayers that it will work.  In addition, we need desperate prayers that it works so that the hospital will invest more time and money into the therapy for more kids who need it.  I'm still working on my campaign to make this therapy available to more kids.  After Emma's been doing it for about 5 weeks, I'll get back in touch with a few people to talk to them about the next step.  They're not getting rid of me that easily.

I have quite a bit of catching up to do at looking back at last year.  Those of you reading the blog probably could care less to read those old blog posts, but it's been very therapeutic for me personally.  It's amazing to see how far we've come.  But also kind of disappointing.  At this point in time last year, we had no idea how dire Emma's situation really was.

April 27, 2010

April 28, 2010

April 29, 2010

April 30, 2010

Exciting news!  As I've been typing this blog, Emma has realized that I have the computer on the floor with me.  And her.  So she rolled and rolled until she got just beyond an arm's length of the computer.  And then she army-crawled!  Emma started figuring out how to army crawl this week.  Each and every day she gets a little bit better at it.  Now don't be fooled - she's not going that far or that fast.  But she's pulling her knees under her a little, too, so regular crawling won't be far.  Yay!  I know most parents get a little exasperated when their kids start crawling because they're suddenly mobile and into everything.  I welcome mobility!  Not just because it's major progress for a child with spina bifida but also because we don't have to constantly keep Emma entertained in one spot.  She will be her own entertainment!  Yes, she will get into things, and yes, we will have to watch her more closely, but we're ready for it.  And thrilled about this exciting new blessing that seems to be just around the corner...

Happy Easter!

Emma had a fantastic first Easter.  I call it her first Easter because she spent last Easter laid up in the hospital on her tummy...that's no way to spend Easter.  We took her to the church nursery for the first time now that cold and flu season is primarily behind us.  She was fine (happy, actually) when I left her at 9:45.  When I checked on her at 10:45...not so fine.  Screaming her head off, actually, and I was the only one who could console her.  And I don't even know if you could call it consoled...snubbing instead of screaming, really.  So then I left her again and went to our 11:00 service because her only problem was sleepiness.  So now the rest of the world (and by the rest of the world, I mean the nursery workers at church) know what a strong-willed little fighter we have.  She fought sleep like a champ, and when I got her at 12:00, she was laid out across our friend Joe's chest.  Joe had apparently been threatened within an inch of his life not to move and wake her.  Sorry, Joe.  Here begins Emma's training with staying in the nursery...

After church we ate lunch at my parents' house, and we got some amazing Easter pictures of Emma.  There are a lot of them, so bear with me.

And on this day last year: April 26, 2010

John Deere

Our nephew, Mason, loves tractors.  My brother- and sister-in-law are not tractor people.  But like any healthy, hearty boy, Mason loves tractors of all kinds.  So on our last night at the beach, we made a deal with him: Russell told him he had a surprise for him if he behaved at dinner.  What was that surprise?  A visit to a place called Farm Toy Country.  When Mason saw it from 15 feet away, he took off running.  It was absolutely precious.  I tried to get pictures of him inside the store, but most of them were blurry because he was running circles and figure 8's....it kind of reminded me of those Family Circus cartoons where the kids' chaotic moves are tracked with the dotted lines.  My favorite was when I tried to take a picture of Mason and Uncle Russell, but Mason would say, "Cheese!", glance at the camera for ONE second (and only one), and then look around because he was so amazed by the store.

A few more days from April 2010

April 21, 2010

April 22, 2010

April 24, 2010

It's so crazy to remember how bad Emma's infected incision was back then.  I remember Dr. Troup telling us that it would be ok, and he seemed so nonchalant about it.  I trusted him, but I just took what he said as him being a doctor who sees it all, and it's not really his kid anyway.  But now I see why he was so....relaxed about it.  He sees the kids who can't talk or breathe on their own.  He sees kids who have no hope of ever standing on their own two feet, even with assistance.  Let me tell you, I'd take an infected incision any day over some of the things we deal with now.  But I'm trying to remember that God is good, and He loves us.  Some days it's hard to feel that, but He does.  He gave us a laughing, smiling, fiesty Emma who wowed the nursery workers at church yesterday with how hard she can fight sleep...and them!  He has blessed us by being surrounded, smothered, and covered with loving family for a whole week, all the way up to 9pm last night.  We are truly blessed.

What do you do on a cold, rainy day at the beach?

Yesterday was a cold, dreary beach day, but we made the best of it. Allison went shopping, and traffic was so bad, she almost turned around and came back.  I was in my PJ's until 1:00, and it was glorious.  Mason didn't even go down to the beach, just to the pool once.  Five out of six adults napped (including me).  This is what vacation is all about - no pressure to do the things you "should" do, just as long as you enjoy yourself.  We had three laptops with us, so we kept ourselves entertained...and that includes Emma in her stander.  She truly looks like she's doing some serious work alongside Daddy.

We're on the way home now, sadly, but I'm excited to see Lola and get Emma all dressed up for Easter tomorrow. What a fantastic spring break it's been! We are so blessed to have such a loving family....who actually enjoys each other's company!

The pool!

So after we took Emma to the beach yesterday and today, we brought her to the pool.  The condo here has a heated indoor pool that is great for introducing a little one to the pool, with the exception of all the chlorine.  When we first started to put Emma into the float yesterday, she screamed bloody murder, which of course was magnified 10 times by being in an indoor pool.  So Russell just carried her in the water and gradually got her used to feeling the water around her.  Then he put her in the float, and she seemed to enjoy it.  We put her in the float today, and it went much more smoothly.  We even got some smiles out of her after pushing and pulling her around the pool in it.  You'll see in the last picture that she likes playing with the water in her hands.

Russell's parents came down to the beach tonight, and Mary Jane (my MIL) is now giving Russell a run for his money...Emma chose Mama Jane over Russell SEVERAL times tonight.  The rest of us who have been shunned by Emma in favor of Russell think it's great that he's getting a taste of his own medicine.

Tonight Emma's eyes were really red around the edges and watery after she woke up from her nap at 6:00.  She got a little more chlorinated water in her eyes today than yesterday, so I'm hoping that's all it was.

As for last year:

April 19, 2010

April 20, 2010

The beach!

We are officially on Emma's first beach trip.  Every summer, we go to the beach with my mother-in-law, father-in-law, brother-in-law, sister-in-law....ok, let me stop here....they're all in-laws, so just add that to the end of every relative....nephew, uncle, aunt, 2 cousins, and anywhere from 1 to 6 family friends.  We have so much fun every year!  Russell and I didn't go last year because I had just been off of work for 14 weeks, and we didn't really want to take Emma away from her doctors that early in the game.  So here we are for spring break at my in-laws' newly purchased condo.  Yesterday Emma loved the beach, as long as she was in her daddy's lap.

Side note: Emma has been unbearable when it comes to her daddy this week.  If she can see or hear him, she whines and cries until he holds her.  Then she turns around and boastfully grins at whatever poor soul was just holding her as she cried and pushed away towards Daddy.

Ok, so back to the beach.  She loved the beach yesterday.  She and Mason rode down in the wagon together, and Emma was a doll playing with her toys.  Today we took her down to the beach three times, and unfortunately, we took her down right before her naps on two occasions.  So we had a very cranky baby at the beach.  Here are some pics of a happy baby, though:

And don't forget:

April 17, 2010

April 18, 2010

We're still around with lots to share

The Type A in me is going to have to post multiple entries to relay all the recent Emma info.  I just can't handle putting it all into one big entry.  And no one wants to read one big entry.

So let me start with Shriner's.  Last week at Shriner's, we saw Emma's urologist, neurosurgeon, and orthopedist.  Emma is no longer on her antibiotics to prevent bladder infections.  She's going to be tested again in a few months to make sure it hasn't come back.  If the UTI DOES come back, that means her bladder isn't totally emptying, and we may have to start cathing her, which would totally depress me and probably send me into a four-day depression slumber.   We told Dr. Troup that Emma's whole left leg from hip to foot twitches very quickly sometimes, so he's ordering an EEG to make sure she's not having seizures.  He doesn't think she is, but he wants to make sure.  The EEG involves bringing her to the hospital sleep-deprived (sleep-DEPRIVED, not sleepy).  I think I'd rather play in traffic, but that seems to be the story with so many of Emma's medical tests.  Her orthopedist said that Emma can stay in her stander for longer than 30 minutes each day, which is a great thing considering she LOVES it, and it's a great chance to get some housework accomplished.

The next thing I'll mention is that Emma has been accepted by the hospital for the VitalStim therapy!  This was obviously one of my goals, but I'm not done.  I'm not a parent they can just get off their backs simply because they offered this therapy to MY daughter.  As I've said before, I feel led to be an advocate for other kids whose parents don't know how to be.  I'm still working on this aspect of it....but as for Emma, she's going to have a swallow study soon and then move forward with the VitalStim therapy.  She'll have this therapy twice a week for twelve weeks and hopefully be more effective at swallowing.

This is it for part one of my catch-up entry, plus a few more looks back at last year:

April 15, 2010

April 16, 2010

Time travelling

Two things:

Here are the links to last year's events that I've missed the last few days:

April 11, 2010

April 12, 2010

April 13, 2010

April 14, 2010

As the focus of this particular blog entry is looking back on things that happened a year ago, I was reminded of something ridiculous that I heard this morning on HLN.

China has banned the following topics on tv/movies: elements of "fantasy, time-travel, random compilations of mythical stories, bizarre plots, absurd techniques, even propagating feudal superstitions, fatalism and reincarnation, ambiguous moral lessons, and a lack of positive thinking."

Adios, Back to the Future Parts I, II, and III!  If they're banning programming with a lack of positive thinking, what about the news?  Surely their news programs don't just consist of cute stories of a deer and a duck who are best friends or children who raise money to help the elderly....I would guess there's not a lot said about the tragic number of newborn baby girls who are dropped off on orphanage steps.

I (heart) weekends again

Our Sunday School picnic yesterday was delightful.  A little warm in the sun and a little annoying when some people were trying to take over our picnic shelter after we paid $100 for it and THEY KNEW IT....but still a great time.  We were so happy to see our friends Phil and Emily's newborn baby girl, Anna Claire.  She was only...

Pause in the blog.........Russell just sang a song to Emma about how many diapers he had changed compared to me today.  So I stopped and said, Ok, YOU come type the blog, and I'LL change the diaper.  At which point, he started laughing like a 5-year-old and covered Emma with his body so that he wouldn't have to type the blog.........I'm telling you, if he had to type this blog, Blogspot would probably remove it for lack of posting and lack of interest........anyway........

...11 days old!!!  Can you believe they were able to get it together enough to bring her?  I was so impressed.  And Emily looks amazing.  Seeing a skinny lady 11 days after birthing a baby sure lights a fire under me to lose MY baby weight!

"Tiger Woods haaaaaaaaas just finished a beer....because heeeee was just eliminated."

"Jason Daaay-ayy was eliminated.  Even though he's from Austraaaalia, he married a girl from Ohio.  Becaaaauuuuuse he's good at golf, he haaaaas a hot wife."

"Charl Swarandkj;ansfoi;dna;  neeeeeeeds to make a par.  IIIIIIIIIII hope he hiiiiiits it right in the bunker."

These are direct quotes from the song Russell is singing to Emma right now while watching the Masters.  I'm cooking and blogging while my two children are playing.  I (heart) weekends.

Oh, Emma has done really well sleeping with her mask at night.  Last night, she only screamed for about 5 minutes when we put the mask on.  Then she slept THROUGH.  THE.  NIGHT. 

I think my blog is trying to tell me that I'm up too late.  I may start the blog earlier in the day, but if I don't post it until after midnight, it dates the next day.  So what looks like Saturday's entry was actually Friday's.  Here is the link to April 9, 2010.
And on this day last year: April 10, 2010

I (heart) weekends

God has blessed us tremendously with the most amazing church I could hope for.  Our friends and relationships at church abound.  Here are some shots from last weekend's escapade with some friends (confession time: envy.  Look at that beautiful green grass.)  We love the Traywicks and Harrises.

The essence of trouble:



Tomorrow's fun - picnic with our Sunday School class.  Doesn't that sound so...cheesy and boring?  Trust me, it won't be.  With this crowd, it never is. 

Here's a look back at last year: April 8, 2010

Mama Bear

Sorry I haven't posted in a while, especially since my last post wasn't exactly uplifting.  Life just gets busy, and that's all there is to it.

What have we been busy doing?  Well, all the normal Emma stuff that takes up so much time.  She is sleeping much better with the BiPAP mask this week than last week, with the exception of Sunday night.  Last Sunday night was the worst night she's ever had with the mask.  THE WORST.  Since then, it has been much better.  We've been putting it on her around 10 or 11 at night, and she sleeps with it on until about 6 or 7 in the morning with little fuss in the meantime.  (Side note: sleeping in our bed, mind you.  She'll go back to the crib eventually, but the mask is what's important right now.)  And she's suddenly a tummy sleeper again.  After spending the first 3 months on her stomach, I guess she needed a break from the trauma that used to be tummy time.  The silver lining to Emma being in the NICU for all that time was that we got to sleep all night at home...but the BiPAP mask seems to be payback.

We took Emma to Shriner's this morning for a bladder capacity and pressure test, as well as a kidney and bladder ultrasound at Greenville Memorial.  We won't know the results until we go back to Shriner's next week to meet with all the doctors.

There have been a couple battles taking up the rest of my time.  One is a battle with Medicaid.  Boring.  The more time-consuming battle has really gotten me all riled up.  There's a therapy out there called Vital Stim that adults have been receiving for years.  Electrodes are placed along the jawline and throat, and patients are given food to swallow.  The machine to which the electrodes are connected help retrain throat muscles to swallow.  This is a very common therapy with stroke victims, brain injury victims, and the elderly.  At a pediatric level, the therapy has allowed kids to come off of feeding tubes and has prevented the need for a feeding tube.

It basically requires 3 things: a certified speech therapist, a piece of equipment, and some electrodes.  Our speech therapist is certified - check.  The piece of equipment is at the hospital - check.  Now for the electrodes.  The electrodes only cost $250 for the WHOLE YEAR OF THERAPY, twice a week - no check.

Emma needs this therapy because we've reached a point where she needs to start eating food other than her bottle.  She's going to have to start eating real food, and this scares all of us to death.  She can choke on something easily, not to mention the fact that she has a really sensitive gag reflex and doesn't do new textures well.

Clearly, this is the therapy that Emma needs, and we've been asking for it since January/February.  But we've come to a screeching halt.  The hospital won't include the electrodes in their budget, and Emma's speech therapist has been told not to solicit donations for the electrodes.  Oh, and parents aren't allowed to purchase the electrodes themselves.  UUGGGHHH!  So Mama Bear has stepped in to get this therapy approved for all kids, not just Emma.  As I watch my daughter each and every day struggle to breathe and swallow, my frustration with the hospital politics and bureaucracy grows and grows.  I've been told that doctors are the ones with all the power, so I'm trying to go that route, along with a few other tricks I might have up my sleeve.  Apparently, $6,500 is enough to get the program up and running for a ton of kids.  If this was just about Emma, I'd throw in the towel and send her to Anderson for the therapy.  But there is an absurd number of kids in Greenville who desperately NEED this therapy, and they may not have parents who know how to be advocates.  So I'll keep you posted on our progress.  If I have to raise the money myself, I will, but hopefully we can get this going sooner than that.

I'm not quite sure yet what individual is my end target, that ONE PERSON who needs to meet Emma, watch her choke, and then flash her beautiful grin with those big blue eyes and long eyelashes.  But if any of you out there know anyone at the hospital who can be influential, ESPECIALLY A DOCTOR, please write a letter!  Make a phone call!  This is therapy that ALL kids can receive, whether they are inpatient or outpatient, NICU (well, once they're older), PICU - ALL KIDS!  If you want a little more information, send me a private message under "Leave Emma A Message!" on the left.

I know I haven't posted pictures in a while, and I DO have some to post...soon, I promise.

A stroll down memory lane

April 2, 2010

April 3, 2010

April 4, 2010

April 5, 2010

April 6, 2010

April 7, 2010

Let me be honest

I cleaned out my email inbox today.  Those efforts primarily focused on reading and deleting the emails I receive from a spina bifida moms message board.  It's quite possibly one of the best sources of information I have ever encountered.  And sometimes, the saddest.  These moms deal with so many things that we don't...and we deal with so many things that they don't.  They have made me thankful for the wonderful doctors we have here; Emma hasn't had shunt malfunctions, revisions, infections, etc like so many other kids.  We have perceptive doctors, nurses, and therapists who pick up on things that others of the same profession in different places do not.  We live 15 minutes or less from emergency rooms, therapists, pediatricians, a neurosurgeon, the Shriner's Hospital, and a children's hospital.  There are some moms who have to drive 15 minutes just to get to a paved road.  We on this message board are consumed by our children's problems - learning delays, learning disabilities, poor eyesight, poor hand-eye coordination, low self-esteem, borderline obesity simply due to the lack of being able to move, shunt infections, shunt revisions, Chiari decompressions, tracheostomies, feeding tubes, ventilators, gag reflexes, sleep apnea, oxygen desaturations, spinal fluid cysts, spinal cord tethering, detethering surgery, scoliosis, catheterizing, bladder infections, kidney reflux, low bladder pressure, enemas, constipation, club feet, underdeveloped ankles and feet, broken legs and ankles, tendon release surgeries.  Insurance premiums, non-coverage, Medicaid cuts. And this doesn't cover it all.

So I have days when I have VERY little tolerance for the complaints of others.  Not because I feel I have the ultimate right to complain because of Emma's disability, but because I read about other agonies that are much worse than ours.

--  The next time you complain about how busy your job is, consider the mothers who have been forced to quit their jobs, lose their insurance, downsize their home, and rely on state-run group transportation for handicapped individuals, just so that someone can take care of their special needs child.

--  The next time your ONE child leaves you exhausted at the end of the day, consider the mothers and fathers raising twins...both with a disability.

--  The next time you agonize unnecessarily over getting pregnant, consider the family who learns that their second child is ALSO going to be born with a disability.

--  The next time you complain about your children growing out of their clothes so fast, consider the mother who cannot just purchase any kind of cute shoes or pants she wants because her child is in a wheelchair, walks with a walker, walks with leg braces, walks with ankle braces, has a trach, or has a feeding tube.

--  The next time you spend too much money on things (or high-end models of things) that your child doesn't REALLY need, consider the child who finally got a wheelchair only because her mother happened to find a child's wheelchair at Goodwill.

--  The next time you spend an excessive amount of money on yourself instead of saving it, consider the parents who will be supporting and living with their disabled child for the rest of their lives.

I'm not hurling insults at anyone specific, just at our general inability to see beyond our own "problems."  Take note of the quotation marks.  I swear I'm not lashing out with this blog entry, but we all have days when perspective is very much needed.  Myself included.  So stop what you're doing RIGHT NOW and thank God for your blessings.  And be specific.

PS - I know that I have some baby weight to lose.  Now that ads are on my blog to raise money for wheels for Emma's mobile stander, I don't appreciate the Weight Watchers ads that pop up.  I don't need my blog to tell me to lose weight; I can see that for myself!  And now that I've referenced "Weight Watchers" and "lose weight," even more of those types of ads will show up.  What a vicious cycle it is.

Feeling pretty good today

As I posted earlier, Dr. Gault wants us to be on the lookout for Emma to be a little bit livelier.  I believe Emma DID feel better today!  She was much more energetic...and....I don't know how to describe it...she's always a happy baby.  But today she seemed to have more umph, and she was even happier than she usually is.  So I think this BiPAP thing is really making a difference!  And she's not even sleeping with it all night yet.  Thank goodness we're seeing results because we have some very difficult nights behind us and ahead of us as well.

That's about all I have to report today.  Plus last year's post: April 1, 2010