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.

Wednesday, September 17, 2014

2nd Grade

Here we are, on our 3rd week of 2nd grade!

Ella was nervous about this year because she was really afraid that her teacher would ask her to do things she doesn’t know and she was afraid that she wouldn’t be able to ask questions.  Apparently at the end of last year someone said that in second grade you have to be “first time listeners.”  Ella took that to mean that she could never ask a question.  I tried to explain that the person meant that she just needs to pay attention.  It’s ok to have a question if you don’t understand something.  Ella wasn’t convinced.  It didn’t help that we were in Cincinnati during the school open house, so we didn’t get to meet her teacher until the first day.  I tried to reassure her by telling her that her teachers first name is Katie and I have never met a Katie I didn't like.

Joe and I broke the rules and walked her to class on the first day (parents aren’t supposed to do that) so that we could meet her teacher and see her classroom.  The teacher was incredibly nice and Ella already had several friends in the class (although her best friend isn’t in her class).

At the end of the day when I picked Ella up and asked how her day was, she responded, “So great!”  What a relief!  Every day she has responded that it has been a good day.  Some days she even says, "AWESOME!"  So far her favorite activity is when they get a “Brain Break” and get to listen to music.  We have heard nothing but glowing remarks about her teacher (who just got married this summer), so we are very relieved with how the school year is shaping up to be.

Last night was the school Open House, so I actually got to visit Ella’s classroom and talk with her teacher for a few minutes.  She has some good ideas about things to do for Ella, which I’m excited about.  My favorite was seeing Ella’s self portrait.  She even included little pictures of Sabrina and AJ.

So far 2nd grade is going great!  We are all excited to see what the year holds.

Wednesday, September 3, 2014

The last trip of summer

Last week we took our last trip for the summer.  We headed up to Cincinnati for Ella’s yearly check up.  This was a whirl wind trip with us arriving Wednesday morning and leaving Friday evening.

In a nutshell, the appointments went terrific!  Everyone is really pleased with how Ella is doing right now.  We only had a few concerns to discuss and both Joe and I feel confident that we can work on those and get them taken care of soon.

I didn’t really mention it here, but several months ago we switched Ella to what is called a blended diet.  Basically, with her g-tube she had been eating what she wanted by mouth during the day and getting a pump feed of high calorie formula overnight.  Over several months she started developing very severe stomach issues.  She stopped eating by mouth altogether because she constantly complained of her stomach hurting.  She would wake up almost every morning and throw up (to the point where she slept with a bucket next to her head so that she could just grab it if needed).  It got so bad that her body seemed to stop digesting the formula altogether.  It just kept building up in her stomach and would sit there for hours.

I’m not going to criticize high calorie formulas because they work well for a lot of people and have been life sustaining for so many kids.  Unfortunately for Ella, they just weren’t working anymore.  Several people had encouraged me to give the blended diet a try, but the thought was too overwhelming.  I was massively pregnant with AJ and wasn’t in a mental state to add yet another “job” to my day.  We switched formulas to something different, that didn’t work.  We tried slowing down her pump feed, that didn’t work.  All I knew was that my sweet girl felt and looked terrible.

A blended diet is exactly what it sounds like…blended food.  You take whatever “real” food you want to and blend it up so that it can easily be pushed through her g-tube.  Trying a blended diet was my absolute last resort.  I was at my wits end and honestly didn’t know what else to do.  This was the only thing I hadn’t tried yet.  So I decided to give it a shot.  My first step was really drastic.  I cut out everything that was man made.  If I couldn’t read the ingredients and understand what they were, it wasn’t going in her body.  I also cut out all dairy.  For several weeks all she got in her body was meat, vegetables, fruit, eggs and goat milk (yes, goat milk).

Within a week her stomach aches were gone and she stopped throwing up.  Her skin was still terrible, but she acted like she felt so much better.

Within a month her skin started to heal up.  Ella had a wound on her chest for over 3 years.  I had tried everything I could think of to get it to heal.  Prescription medicine, holistic treatment, or topical ointment…nothing worked.  After a month of a blended diet, the wound went away.  The area is still fragile and opens very easily, but the fact that it heals at all is amazing to me!

I really believe that the single change to a blended diet has been the greatest benefit to Ella lately.  With this change, her doctor visit was smooth sailing.  Yes, there are some things we need to address, but they are “easy” fixes (as if anything with EB is easy).

She has actually gained a pound (she still needs to gain more, but that’s better than a loss) and at the very least, she’s stable from last year.  She doesn’t need any procedures right now, which is always a good thing.  She has good hand function and her mobility is decent.

At the eye doctor Ella was the ideal patient.  Even though she hates getting her eyes dilated (who doesn’t right?), she was calm and didn’t cry when they put the drops in her eyes.  Her lazy eye is doing much better and they were happy that the glasses have corrected any eye crossing she used to have.

We went to a new dentist this year.  Usually we go to the dentist at the hospital, but we had been recommended to see another dentist in Cincinnati who has her own office outside of the hospital and works with a lot of EB kids.  It was funny because when I was signing her in the medical history sheet actually had EB listed.  I have never seen that on a medical history sheet before, which tells me that she sees several EB kids.  The dentist was AWESOME!  I wish I could go to her!  She was so gentle and calm with Ella.  And Ella handled it all like a champ!  Ella didn’t get one new boo boo in her mouth, which is amazing.  She said Ella’s teeth are looking good and her adult teeth have plenty of room (for now).  She even took a few minutes to look at AJ’s new teeth and told me how to brush them and when to work on eliminating the thumb sucking.

After all of Ella’s doctor appointments we decided to visit the Creation Museum in Kentucky.  We had heard of the museum in past visits, but never had the opportunity to visit.  Both Joe and I were extremely impressed!  We kind of expected it to be corny, but it wasn’t.  It was very well done and I highly recommend visiting if you get a chance.

We flew home late Friday night and slept in our own beds that evening.  It was a quick trip, but it was good and we were really glad to go before school started.