Wednesday, April 23, 2014

Tuesday morning

It’s a beautiful Tuesday morning here in Alexandria, VA.  I woke up to the sun shining and the birds singing.  I was going about my morning in bliss (ok, not complete bliss since I do have 2 kids that have a lot of needs in the morning) when I grabbed a couple of minutes to check facebook.  That is when the wind got knocked out of me.

Last night the EB world lost another warrior.  This time it was an 11 year old girl.  Her name was Hannah.

I hate EB.  I rarely express it with words, but I do.  I hate this dreadful disease.  I hate what EB does to precious kids.  I hate what EB looks like.  I hate how EB feels to my sweet daughter.  I hate the toll it has taken on her little body.  I hate that it has forced her to grow up way too fast.  I hate that, because of EB, too many children leave this world long before they should.

But on the other hand, I love how EB has opened hearts.  I love how EB has given our family a chance to share Christ and his mercy.  I love how EB has brought our family closer together.  I love how EB has allowed Christ to use his strength in us.  I love how EB has taught me never to take a day for love and cherish each day and not waste time stressing about things that aren't important.

I rarely post about people with EB who pass away, mainly because if I did then I would be posting nearly every week.  I can’t handle the emotion of that.  But this girl, something about her struck me.  I didn’t know her.  I have never talked to her parents.  Honestly, I hadn’t even seen her picture until she was already gone.  What stabbed me right in the heart was her age.  11 years old.  Only 5 years older than my sweet Ella.

At 11 years old I was in 6th grade.  Caught in the middle of childhood and adolescence.  Anticipating Jr. High and all that it would entail.  Just starting to notice boys.  Yet, still playing with Barbie’s and enjoying a good ice cream sundae.  I spent my mornings at school, my afternoons playing with my friends, and my nights at home with my loving family.  That is how 6th grade is supposed to be.  It is not supposed to be filled with surgeries and hospital stays, bandage changes and narcotic pain medicines.  You are supposed to eat dinner with your family around the kitchen table.  Not eat carry-out over your hospital bed while your parents take shifts staying with you.

Today I will pick Ella up from school and squeeze her a little tighter.  I will cuddle her a bit longer, and I will cover her face with a few more kisses.  I will, once again, pray my way through her bath and bandage change.  I will try my best to comfort her when she cries in pain from the bath water.  I will try to be sympathetic when she’s moving slower than usual and I’m in a hurry.  I will do all of this and more, because there is nothing in the books that says Ella isn’t next on the list.

**This was actually written on Tuesday April 22nd, but posted today, Wednesday April 23rd.

Monday, April 21, 2014

Spring Break Staycation

If you have been following our blog for any length of time, you have probably noticed that we love Staycations.  We took our first one when Ella was 3 years old and have continued to have one at least once a year.  We love it!  No packing.  We get to sleep in our own bed.  No time change adjustments.  And we get to do a lot of fun things around DC.

So last week we had our Spring Break Staycation.  Joe was able to take a couple of days off work to hang out with us, so we had some great time together as a family.

Saturday we hit up the new hibachi restaurant down the street.  Our favorite place, Hana Tokyo, closed in January.  We were so sad to see it go, but just a couple of weeks ago a new restaurant opened in its place, Samurai Hibachi.  We were happy to give it a try and discover that the food is just as good as Hana!  After lunch at Samurai we headed to Fort Ward park to take Sabrina for a walk.

Sunday was a typical church day.  We had a great time hanging out with friends and our awesome church family.

Monday we decided to take it easy in the morning.  It was our vacation, after all.  Monday afternoon we had a special treat.  We headed to the movie theatre to see Muppets Most Wanted.  Ella had never seen a Muppets movie before, but she was sure that she would love this.  We all found it really entertaining.  Great humor and awesome cameo appearances!

Tuesday we did something Joe has wanted to do for a long time…we visited Abraham Lincoln’s Summer Cottage.  It was very interesting to see where Abe stayed, stand where Abe stood, and hear stories about his time at the cottage.  It is something I would highly recommend.

Wednesday was “stay at home and do laundry” day.  Nothing too exciting, but definitely necessary.

Thursday Ella and I headed out to the National Harbor to meet up with another EB family.  This family lives in Maryland and has a 7 month old daughter with EB.  Fortunately their older daughter is 6, so she and Ella had a lot of fun playing together.  We got ice cream, walked around the harbor, visited the “dancing water” (as Ella calls it) at the Gaylord, and had a good time visiting with this family.

Friday we cleaned the house in the morning, then headed to the mall for Chick-fil-a and to get Easter clothes for both Joe and me.  I can’t tell you the last time I bought a new dress, so it was fun to actually find something new to wear.  Friday afternoon Grammy and Fred arrived for the weekend.  It is always fun to have them visit.

This was the start of a very exciting weekend with family in town and celebrating our Risen Lord!

Wednesday, April 2, 2014

An Unplanned Trip

For several months Ella has been saying that food gets stuck in her throat.  Sometimes, while she was eating, she would pause, put her hand to her throat and swallow, then she was fine.  I, honestly, didn’t think much of it.  She had a barium swallow done in August and they didn’t see any significant narrowing, so I figured it was something we could address on our next visit to Cincinnati.

Then Monday March 17th happened.  It was about 11 pm and Ella had been asleep for hours.  She woke up gagging and choking and unable to breathe.  Finally, after a few seconds she threw up some blood and started breathing again.  Ella had choked on her own phlegm.  This was bad.  Really bad.

I hate to say it, but I don’t panic very much anymore when it comes to Ella.  We’ve experienced so much in her 6 years of life that in many ways I feel like I’ve seen it all.  But this incident caused me to panic…I mean seriously panic.  To the point where I didn’t sleep all night.  I just lay in bed listening for her.  Praying she would breathe the entire night.

Joe called Cincinnati Children’s Hospital first thing the next morning and the awesome EB nurse got to work.  Within a couple of days we had Ella scheduled to go in for a throat dilatation.  Basically, they go into her throat with a deflated balloon catheter and slowly inflate the balloon to stretch out any narrowing in her throat.  We decided that since she was going to be under anyway, we’d go ahead and have her teeth cleaned too.

On the night of Wednesday March 26th we flew out for our whirlwind trip.  Thursday morning at 6 am we checked into the hospital and got Ella all situated for her surgery.  I don’t care how many times a parent has to leave their kid in the operating room, it is always difficult.  No matter how big or small the surgery is, no matter how amazing the doctors are, it is heart wrenching to leave your precious child.  Joe and I cry every single time…and Thursday was no different.  I am convinced that they strategically plan the OR to be a long walk to the waiting room so that parents have several minutes to pull themselves together before going back into civilization.

I have to give a quick shout out to Joe’s sister Maureen.  We are beyond thankful that she was willing to come to the hospital and help us with AJ.  We really don’t know what we would have done without her.

In a nutshell, Ella’s throat was about 95% closed (insert another panic attack)!  It was a very good call to go in when we did.  As far as her teeth, we are running into a situation where she is losing her baby teeth, but her mouth isn’t big enough for her adult teeth.  Things were very crowded in there!  She had already lost 3 baby teeth on the bottom and the 2 adult teeth that were coming in were really cramming things up.  The dentist (who we had never seen before, but who we now totally love and will see every time we go for a visit) pulled 7 of Ella’s baby teeth, 4 on top and 3 on bottom.  The first few days of recovery were rough, but now that Ella is getting the hang of eating with her back teeth and now that her gums have healed, she’s doing great.

I am reminded, once again, of what a blessing Ella is and what an incredible little girl she is.  I was afraid that she would be upset about losing so many teeth.  That wasn’t the case at all.  In fact, she was very excited that she didn’t have to feel it when her teeth were pulled.  She is also beyond thrilled about the financial prospects with the tooth fairy.  As far as her throat, it was sore for the first day, but now she is very happy that she can eat anything she wants to and doesn’t have to worry about things getting stuck.

Joe stayed the night with Ella in the hospital while I went back to the hotel with AJ.  We left to come back home Friday afternoon.  Unfortunately AJ didn’t sleep well at the hotel and cried half the flight to Cincinnati and half the flight home, making our travel even more stressful.  We were all very glad to be home Friday night!  We were so happy to be home, that we didn’t even leave the house on Saturday.  Joe and I agreed that the kids could sleep as long as they wanted to, and all 4 of us stayed in our pajamas all day.

Ella had a lot to say about our trip and her surgery, but here are a few highlights:

 *  Before her surgery we were talking to Dr. A who was going to be doing her dilatation.  She pointed to her throat and said, "It's right here." showing him where the stricture was.  After the surgery he told us that she was exactly right.  Where she pointed was the exact place where the stricture was.

 *  “Hey dad, do you like my teeth?” followed by the biggest smile she could give him.

 *  While sitting in her hospital bed, Ella spent a lot of time practicing saying words.  Without your teeth some words can be hard to say.  Finally she said, “Well, at least I can say the important words; mom, dad, AJ, Sabrina.”

 *  Ever since the surgery Ella has been calling herself either toothless or snaggletooth.

 *  And of course, the most important thing she said was, "Daddy, you were right: even though I have to see a lot of doctors, Cincinnati is still a fun place."