Monday, March 23, 2015

I haven’t posted since October?

Where has the time gone?  Here’s an update.  I will try to be concise, but a lot has happened.


Trip to the pumpkin patch.

Happy Halloween!  Elsa and Olaf had a great time and raked in lots of candy.

Happy Thanksgiving!  AJ and I got to go to Ella’s school for a special Thanksgiving lunch!


The fantastic news about December is that on December 9th our precious boy turned the big 1 year old!  The next day, on December 10th, he took his first steps.

Unfortunately in December Ella had to be hospitalized for 4 days due to an infection.  It was a really crummy way to start the Christmas season, but we are thankful it wasn’t more serious.
For several days she had a wound on top of her middle finger of her left hand.  In wrapping the finger (since it’s contracted) the wraps accidentally released the bottom of her finger and created a new, deeper wound.  The top wound healed completely fine, but the bottom wound was being more stubborn.  Before I knew it her entire finger was red and swollen and very sore (she even asked her aide to do her writing at school).  I decided it was time to call her pediatrician to get some oral antibiotics…or so I thought.  I took her in and our pediatrician took one look at her finger and sent us to the hospital.  I tried to talk our way out of it (no one wants to be in the hospital 2 weeks before Christmas and we had 3 very exciting events coming up that week), but our ped told me that it was time.

We were all disappointed that this had to happen, but the truth is that it’s pretty amazing that Ella has made it 7 ½ years without a hospitalization due to infection (other than when she was born and surgeries).  The truth is, we have been preparing for this for 7 years.  We knew that it was just a matter of time.  The question was never IF Ella would be hospitalized due to infection…the question was WHEN it would happen.  I have a complete IV kit in my car taped to her car seat with step by step directions on how to place an IV with little damage to her skin.  I have bags of emergency bandage change kits, so that when this happens I can just grab a couple and know that everything I need to change her bandages is in that bag.

We went to a new hospital that has never treated Ella before, so that made us even more nervous.  Our awesome ped called ahead of time and prepared them for our arrival.  She pretty much told them to do whatever I say…and they did.  They didn’t lay a finger on Ella without listening to every single word I had to say.  In placing her IV they followed my step by step instructions.   Once we were admitted they immediately came to me and got phone numbers for the EB nurse, Ella’s EB doctors, and the Cincinnati Children’s Hospital EB clinic.

Ella was a trooper through it all (as though we would expect anything less).  The most annoying part for Ella was that she felt completely fine.  In her mind, you only go to the hospital if you’re really sick, having surgery, or having a baby.  She was none of those things, so she had a hard time understanding why she had to be in the hospital.  She was quarantined, which meant she wasn’t allowed to leave her hospital room.  She was bored out of her mind, but several friends and family sent her games, books and crafts to keep her busy.  A special organization called The Butterfly Fund had sent Ella an iPod Touch for Christmas.  As a special treat we let her have it early.  It definitely helped pass the hours in the hospital.

Unfortunately her hospitalization meant that we had to cancel AJ’s first birthday party.  I promised him that he would get a big birthday party when he’s older.  At least at 1 he doesn’t really know what he was missing out on.  That said, mommy guilt has definitely kicked in.  The poor kid didn’t even get to have his first cupcake.  I’m debating on whether or not to throw him a half-birthday party.

While we were admitted, our friends made sure we were ok and that everything was taken care of at home.  Several of our amazing friends from church watched AJ until Grammy Janet could get down here.  One friend even came over to our house and picked up Janet when she arrived, and drove her to our other friends who were watching AJ so that Grammy wouldn’t have to drive to a new place alone.  Several people came to the hospital with toys, games, food, coffee (good coffee…not hospital coffee), and just kept us company.  We have the most incredible church full of the most incredible people.  Joe and I are constantly in awe of how they show God’s love to us.

Ella was in the hospital for 4 days and finally released at 11 pm on Saturday December 13th.  Her hospital stay also meant that we missed our tickets for our favorite event of the Christmas season…The Living Christmas Tree.  Ella was devastated.  There were 2 more performances for Sunday December 14th, so I called in a favor and thankfully we were able to go see the last performance.

On Tuesday December 16th Ella and I headed to McLean, VA to see her favorite singers in concert, Keith and Kristyn Getty.  A special friend hooked us up with FRONT ROW tickets!  It was awesome.  Ella loved seeing them in concert again, and at the end Kristyn even looked at Ella and waved.  She obviously remembered her from when we met them at Easter.

On December 13th at 2:30 am I lost my last living grandparent.  Maw Maw (my paternal grandmother) passed away peacefully with my parents by her side.  At 97 years old she had lived a long and fruitful life.  We miss her greatly, but know that she was ready to pass on.  I was able to fly to Shreveport, LA the weekend of December 19-21 and spend the weekend with my family as we said our goodbyes.

We spent Christmas day at home in the morning and had Christmas dinner with friends in the afternoon.  It was a great day!  Ella got the main thing she had been begging for…a Cotton Candy Machine.  We made 2 batches that morning and both were delicious.  Fortunately the machine didn’t coat my house in spun sugar, as I had feared.

On the 26th we packed up the car and headed south to Disney World.  We spent the night with my cousin then started our 9 hour trek on the morning of the 27th.  Unfortunately, it seemed as though everyone on the east coast was heading to Orlando.  A trip that was supposed to take 9 hours ended up taking 15 ½.  It took us 3 ½ hours to drive 90 miles!  Needless to say, we have decided that we are NOT fans of South Carolina and their 2 lane highway.  The second we hit the Georgia border, the highway turned into 3 lanes and the traffic started flowing.  At this point both kids were in complete meltdown mode, and Joe and I were in desperate need of a break.  So we pulled over to the first place we saw…a Kroger grocery store.  We got out, went to the bathroom (changed AJ) and walked around the grocery store for a good 30 minutes.  We picked out whatever we wanted for dinner before heading back to the car.  Once we were back in the car we started chowing down.  After getting some food in our bellies, we were all much happier.  Soon the kids were fast asleep.

We finally pulled into the resort at 12:30 am.  Boy, were we glad to finally be there!

Despite our fatigue, we woke up bright and early the next morning and headed to Epcot.  I hadn’t been to Epcot since I was in 7th grade, so it was all a blur.  The only thing I really remember is that my dad wanted to eat lunch in Germany.  Joe and the kids had never been before.

Ella had heard all about the ride Soarin’ and was insistent that we ride that ride first.  It was just as awesome as expected.  We all loved it!  Epcot was a great day.  It wasn’t too crowded so we were able to make our way around the park easily and see all that we wanted to see.  That night we headed back to the house to meet up with the rest of the Murray clan.  Dinner was a great time of catching up and letting the cousins play.
Monday was spent at Magic Kingdom.  The last 2 times we have been to MK was during the week of Christmas…arguably the busiest week of the year.  This year was just as crowded.  Ella had 1 wish in visiting MK…eat dinner at the Be Out Guest Restaurant.  Reservations were completely booked, but they have open seating for lunch.  We stood in line for over an hour, but were finally able to go in and eat.  Ella enjoyed her cupcake topped with “the gray stuff.”

Tuesday was our relaxing day.  Family photos were taken and we just hung out around the pool.
Wednesday we headed over to Hollywood Studios.  I know people go to Orlando mainly for Magic Kingdom, but I have to say that both times we have gone to Orlando we have had the most fun at Hollywood Studios.  SO MUCH FUN!  If you’re ever planning a trip to Orlando, you have to spend a day at Hollywood Studios!  We got to see the Frozen Sing-Along show, which was something Ella had been looking forward to for months!  But the highlight of the day (week) was when Ella got to go to Padawan Training Academy and was able to fight the REAL Darth Vader!  I almost think Joe was more excited about this than Ella was!  She was so proud of herself and said that she knew she could beat him.  The best part was that the Master Jedi who was leading the training academy, was a woman.  Ella was thrilled to see that girls can be Master Jedi’s too.  Afterward she went to the gift shop and built a special light saber for AJ.  Since Ella already had 2 at home, she knew she didn’t need another one.  But she also knew that young Luke (as she likes to call him) would definitely need one for when he gets older.

We headed home Friday afternoon.  It was such a great week hanging out with all of the Murray family.  We always leave wishing everyone lived closer to each other.


In January we flew to Texas for a quick trip to surprise my maternal side of the family during their annual Christmas party.  They hadn’t met AJ yet, or seen Ella in several years, so it was a fun trip.  I think Ella's favorite part was getting to meet her new cousin, Ava.

I can’t neglect to mention that on January 8th (Elvis’ Birthday) AJ and I, and some other Elvis loving friends, went to Chuy’s Restaurant for lunch.  We had heard that if you come dressed up like Elvis then you will get a free meal.  Let’s just say that AJ got a free lunch.

Also in January Ella got to participate in her first Pinewood Derby with the GA’s and RA’s at church.  It was a lot of fun!  Her car came in 2nd in both heats it participated in.  Next year we’ll have to do more planning on how to make her car faster.
During January and February Ella participated in her school Chess Club.  It was a great activity for her that she really enjoyed.  It’s often hard to find extra-curricular activities appropriate for Ella, so we were really excited to see this on the list of after school clubs.

Not much happened in February.  We spent most of the month recovering from our busy December and beginning of January.  I did get to go on our church Women’s Retreat, which was a lot of fun.  I didn’t think I was going to get to go, so it was awesome that God unexpectedly opened that door.


So far March has been off to a good start.  Joe got to go on the Men’s Retreat, which I know was a good time for him.  Ella and I got to attend the GA Tea and have a special girls night out to go see Cinderella.  As we were leaving the theatre Ella said, “Mom, that is definitely a movie we have to have for home!”

Ok, so I think you’re caught up.  I will honestly try to do better.  Most of my days are spent either running around town, or chasing AJ around the house.  Nap time is when I get to catch up on little things like taking a shower or washing the dishes.

Both kids are doing fantastic.  AJ is quite the pistol.  He’s walking all over the place and he recently learned how to flush the toilet.  We decided to be proactive and put locks on the toilets before we have to spend $1000 paying a plumber to come get whatever AJ decided to flush.  Ella is doing great.  She lost a lot of weight between her hospital stay and a nasty stomach bug that went around our house, but we’ve finally started getting some meat back on her bones.  She loves to read and is becoming a very good story teller on her own.  Math is a struggle, but we’re working on it.

Spring Break is coming up, so hopefully we'll have some fun activities to share during that week.

Tuesday, October 21, 2014

The Non-EB Child

Before I delve too deep into this, let me make one thing very clear…Ella is not difficult.  In fact, she’s really pretty easy.  She follows directions.  If I tell her not to do something she rarely does it again.  She doesn’t fight with other kids.  She doesn't demand a whole lot.  She’s just really easy as far as typical kid things go.  As far as her bandages, of course it’s not ideal, but they have been a part of our lives as long as we’ve been parents, so even doing her bandages isn’t really an inconvenience.  Other families plan 15 minutes for a bath, we plan 2 hours.  It’s just the way it is…it’s the way it has always been.  When you don’t know any different, it’s not that big of a deal.  And her g-tube is much easier than people think it is.  Instead of eating with her mouth, her food goes directly into her tummy, no big deal.  With all of that said, I don’t want this post to sound like kids with EB are a burden.  I don’t know any EB parent hat would tell you their kid is burden.  It’s simply not true.

We have several friends who have had a typical child after having a child with EB.  The consensus among them all is that, comparatively speaking, a typical child is a piece of cake compared to a child with EB.  I remember shortly after Ella was born, I would be talking to some other moms about typical parenting things.  Many times they would complain about various items of parenting…having diaper explosions, babies only wanting one type of pacifier, no sleep (obviously a big one), the pain of nursing, and the list goes on.  Every time I would sit in silence and think to myself, “So this is what parents of typical kids worry about?”

Before AJ was born, I couldn’t help but wonder how parenting was going to be different.  What is it like to not medicate your child before a bath?  What is it like to just put the kid in a bath without worrying about wounds, bandages, pain, etc?  What is it like to have your kid actually PLAY during a bath and not just sit there and cry?  What is it like to feed a kid and not have to count their calories?  What will it be like to just feed him and not have to use a special bottle to prevent blisters in his mouth?  What will it be like to not stress about diaper brand and just be able to change his diaper without making sure I have a stack of bandages nearby?  What will it be like to be able to leave him in the church nursery and not stay with him the entire time to ensure another baby doesn’t hurt him?  What will it be like to not have to specifically train a babysitter prior to coming over?  It’s weird to think of things like this.  It was always awkward for me to hold a baby that didn’t have EB.  I’m so used to being extra gentle that it’s odd to not think that way.  And a part of me always cringes inside when I see a baby rub his eyes because he’s tired.  Ella slept with soft socks on her hands until she was nearly 2 because we wanted so badly to protect her face.

Ella was nervous too.  She constantly asked questions like, “What if he doesn’t like me because I have boo boos?  Will he think I look weird because I have EB?  Will you teach him not to be wild and rough when we play?”  In fact, before AJ was born Ella had a meeting with a child psychologist who helped her talk about some of her fears about having a “typical” baby brother.

All of that said, parenting a non-EB child is completely different.  Everything he does is different.  Partly because he’s a different child, but partly because we don’t have to be as cautious, so we give AJ a lot more freedom than we did Ella.  He’s much more open to other people because we don’t hesitate to hand him off.  In fact, it is not uncommon for me to pass someone in the hall at church and say to them, “Can I hand you my son?”  He is left in the nursery every Sunday while Joe and I head to bible study and church, every Wednesday while we are in class, and every Thursday while I am at bible study.  I started feeding him babyfood sooner, started testing him out on baby biscuits sooner, and I started trying to let him sit up sooner.  I let him explore more, and I let him get hurt more.  He has fallen off furniture, pulled the baby gate down on his head, and climbed the stairs.  Ella never fell off furniture and never pulled the baby gate on her head mainly because wherever she went someone was always right by her side.

On the other hand, poor AJ doesn’t get nearly as much one on one attention as Ella did.  He has to cry more while he’s waiting for me to finish up with Ella or Sabrina.  He spends more time in his exersaucer or door bouncer so that I can finish cooking dinner or washing dishes.  I don’t read to him nearly as often and we don't practice our shapes and letters as much.  And to make matters worse, as the poor second child, he has to use his sisters pink baby spoons, play with his sisters pink baby toys, and has even worn his sisters pink pajamas.

As for Ella, she has adapted to sisterhood incredibly, and is ok with her brother not having boo boos like she does.  She has even said that she is happy he doesn’t have to have EB too.  AJ loves her so much and she knows that he doesn’t care if she has boo boos.  When he sees her, he smiles from ear to ear.  When she kisses him, he grabs her face.  When she says “Hi,” he giggles and coos.  He has even started saying “LaLa” when she enters the room.”  Yes, the older he gets the more we have to watch his actions around her.  He likes to grab her arms and legs and doesn’t understand that it hurts her.  But we are cautious and when he does grab we simply remove his hand and remind him to be gentle.  A simple gesture that we want him to use on anyone, not just his sister.

Wednesday, October 15, 2014

Elsa Selfie

Last year Ella decided that she wanted to be Princess Leia for Halloween this year.  We had been through a lot of snow days, and on one of those days Joe and I couldn’t take “kid shows” anymore, so we introduced her to Star Wars.  She was hooked.  She even went to Target and spent her saved birthday money on light sabers.

Then Christmas came…and so did Frozen.  And Ella was mesmerized.  She bought the CD, got the DVD, and memorized all of the songs.  Whenever we would want to watch a movie as a family, Ella had only 1 suggestion…Frozen.

And with that, Princess Leia was thrown out the window and Elsa entered the scene.  Ella called her GiGi and explained in detail exactly what she wanted to be for Halloween and exactly how the dress needed to look.

Well, the much anticipated dress arrived last week.  I wish I had captured Ella’s face when she first laid eyes on it.  She was beyond thrilled.  Of course she immediately put the dress on, then grabbed my phone and started playing “Let It Go” on repeat while she danced around the living room and acted out the movie.

I'm still holding out hope that she'll want to be Princess Leia next year, but for now, I am happy that this dress makes her feel so beautiful.

Unfortunately I haven’t gotten a picture of her fully in the Elsa dress yet, but here is a selfie Ella took in her Elsa wig.

And just because I know you all are itching to know…yes, AJ is going to be Olaf.  There’s only 1 problem…he screams every time we put his Olaf hat on.

Monday, September 29, 2014


There are singles and DINKS (Double Income No Kids) all across the country who take sleep for granted.  They know that they will be able to go to bed whenever they want, sleep an entire night without being interrupted, and wake up in the morning refreshed and ready to start the day.  One day, maybe in the near future, maybe several years from now, they will have a baby.  A precious, cuddly, sweet smelling baby.  And this baby will decide that sleep is not cool.  And when these people come to me and complain about how hard life is with a newborn, I will simply smile.

Ella was a terrible sleeper.  From the day she got home at 1 month old until 3 years old the child didn’t sleep through the night.  Maybe we had 3 or 4 flukes in there, but not enough to boldly state that she “slept through the night.”  To say it was torture would be an understatement.  There were nights I would lay in bed sobbing out of nothing but sheer exhaustion.  There were nights where I would literally scream to God, begging Him to give us just 1 night of uninterrupted sleep.  We even had a few family vacations where I burst into tears in front of family members because Ella wouldn’t sleep.  One year for our anniversary, Joe hired an overnight babysitter to come stay with Ella and we rented a hotel room where we could actually sleep all night.  It was heavenly!

With Ella, I was working full-time, Joe was in law school, and she needed a bottle to get back to sleep (that had to be warmed to the perfect temperature).  We talked about sleep training, but never actually tried it.  The risk of injury was too great.  We took turns each night alternating who would get up with her and prayed constantly that at some point she would outgrow this.  By 3 years old I had lost hope and my body had grown accustomed to functioning on little sleep.  Then September 30, 2010 happened.  It was my last day of work.  Every morning Ella would ask me if I had to go to work, then I would explain to her that mommy worked at home now.  Within 1 week she was sleeping through the night.

I should say that now, Ella is a rock-star sleeper.  The kid can sleep anywhere and be fine.  She isn’t fazed by hotel rooms.  She will sleep as soundly on a blanket on the floor as she would in a nice, soft bed.  She goes to bed without a problem (can’t say the same for waking up) and sleeps all night.  While those first 3 years were horrible, I would gladly go through them again to have the awesome sleeper I have today.
Then comes AJ.  We were preparing for the worst.  Our situation was completely different than before, so we had a plan of action all ready.  With AJ, Joe is working and I stay home, so even though I have to be up the next morning, my need to be productive isn’t as great as Joe’s need to be productive.  Also, AJ doesn’t take a bottle, so when he gets up I am the only one that can provide what he wants.  As fate would have it, by 6 weeks AJ was sleeping 6 hours or longer each night.  By 12 weeks he was easily sleeping 9-10 hours without a hitch.

Then summer started.  Ahhh summer…where any sort of schedule you might possibly think you have is completely thrown out the window.  Ella was home all day and when we weren’t going to a movie or running errands, I was dropping her off at camp or running to pick her up from camp.  And we went on a lot of trips, and stayed in a lot of different homes and hotels and slept in a lot of different beds.  Then the teeth decided it was the right time to poke through, and they hurt and caused a lot of drool and snot.  All of this combined completely ruined AJ’s sleep.  In a hotel you can’t just let a baby cry.  Everyone is in one big room together, and there are neighbors and people in the hall, so rather than let him just cry I would immediately scoop him up and do all within my power to get him back to sleep.  AJ liked this attention.

So now, here we are.  School is back in session and we are back on his regular schedule.  He is back to sleeping most of the night and only wakes up once around 4 am, then goes back to bed fairly quickly.  I am confident that by his first birthday Joe and I will be back to sleeping all night.