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.