Monday, April 23, 2012

New Belly Button

I forgot to add that if you want to send Ella a card while she's in the hospital (she'll be there at least 3 days) shoot an email to Ella's email address on the left, and I'll get the address to you, or you can send it to our house and she'll get it when she gets home.  Thanks.


When Ella was in the NICU and just a week or so old, the doctor who had been working with her pulled Joe and I aside.  He told us what little he knew about EB, how she had already beaten many odds that he knew, and he first mentioned a word that we would come to know all too well…g-tube.  I had never heard of a g-tube before then, nor had I ever known anyone who had one (or if I did they never told me they had it).  He explained that it’s very common for kids with RDEB to need a g-tube, and that while Ella was eating fine at that moment, just be aware that it might be something down the road.  As Ella grew, the more and more kids we knew who had g-tubes.  It became clear that within the RDEB community, it was almost more surprising for a kid NOT to have a g-tube than it was for a kid to have one.

Fast forward to last summer…we knew a g-tube was in our near future.  Ella hadn’t gained any weight in over a year, and her height growth had slowed down.  We were doing all I knew to do to get calories in her, but it just wasn’t enough.  In February Joe and I took Ella back to Cincinnati for an EB clinic visit, and that’s when we decided that it was time to get her a g-tube.  Our plan was to wait until this summer when school was out and she (and we) would have plenty of time to adjust to this new lifestyle.

That’s when the dreaded stomach virus hit.  After months of encouragement, nagging and Ensure, Ella had finally gained 3 pounds.  Within a week of the stomach virus it was all gone.  She was back down to 26 pounds, wouldn’t touch an Ensure with a 10 ft pole, and Joe and I knew that it was time for action.  We felt like we were watching our precious girl dwindle away.  I called the next week and scheduled Ella’s g-tube surgery.

Here are some answers to several questions that may be running through your head:

  • This surgery is not a surprise to us.  Like I said, we’ve known since Ella was a baby that this was most likely in our future.  We’re not upset that she has to get this surgery.  In fact, we’re all relieved.  Joe and I are relieved that her body is finally going to have all the nourishment it needs to do all that it needs to do.  Ella is more than relieved that she’s not going to have to take yucky medicine ever again! (She says that this is the best news!)  This is going to be GOOD for her!  Joe and I were talking yesterday about Ella’s life verse, John 10:10, “The thief comes only to steal and kill and destroy, but I have come that you may have life and have it to the full!”  This g-tube, in a lot of ways, is going to give Ella LIFE TO THE FULL!  She’ll have more energy, gain weight, and likely her wounds will heal faster.
  • Ella does eat…the g-tube isn’t because she’s not eating.  Fortunately Ella doesn’t face the eating issues that a lot of EB kids have.  Yes, she had throat surgery last summer, but that was the first step to getting a g-tube.  We wanted to see if that would help her gain weight before we went the g-tube route.  Ella eats, on average, between 1000-1200 calories a day, but her body needs 1600 to do all that it needs to do (heal, function, grow, learn, etc.)  She just can’t eat that much in a day.
  • Ella will still eat “normal” during the day.  Since eating isn’t the problem, Ella will continue to function normally during the day.  She loves food and there is no way we’re going to take the joy of eating away from her!  She will eat lunch at school with her friends, and will eat breakfast and dinner with us as a family.  She will just receive additional supplements overnight to ensure that her body has all of the calories it needs.
  • If at some point there is a cure, or Ella starts eating enough to sustain her weight, she could get rid of the g-tube.  I know many teenagers and young adults with EB who still have their g-tubes, but I also know several who have had them removed.
  • Our hope is that Ella will start to gain weight immediately.  I talked to a mom recently and her son gained 5 pounds in 5 weeks.  Within 6 months he had gained 10 pounds.  I can hardly imagine Ella with that kind of weight on her body!  I haven’t had to buy her new clothes in almost 2 years, so I guess I’m going to have to start hitting up consignment stores (I'll accept hand me downs too)!  Currently Ella is in the 3rd percentile.  We’re optimistic that by the time she starts kindergarten in August she’ll at least be on the percentile chart.
  • We aren’t exactly sure how her recovery will be.  I’ve talked to parents who have reported that in as little as 3 days their kids were back to “normal” and seemed to be completely fine.  Most parents I talked to said their kids were back in school within a week.  Obviously we hope to have Ella back to her old self as soon as possible, but we’re not going to push her.
  • At this point, Ella knows what she needs to know.  We have told her that she’s getting a very fancy new belly button and that with this belly button her yucky medicine will go straight into her tummy and she won’t have to taste it.  As the surgery gets closer we’ll explain more to her.  And after the surgery we’ll take great effort to explain how important this is for her body.  We don’t want Ella to feel like something is wrong with her because she has this, and we don’t want her to feel “weird” because of it.  Please choose your words carefully when asking about it and we’ll all work hard to keep this as positive as possible.
I hope that answers at least some of your questions.  If you have more please feel free to leave them in the comments section.

Ella’s surgery is just around the corner and we are asking that you all lift her up to her heavenly Father who loves her even more than we do.  Pray for an uneventful surgery and an incredible recovery.  Pray for Joe and me for comfort.  We know that this is the right decision, but it’s never easy to watch our precious girl have surgery.  Please also pray that we get good rest at the hospital (I know it’s a long shot) and that we’re able to take in all of the information given to us.  Pray for our insurance and that there are no hiccups with coverage.  Pray for the doctors and nurses who care for her.  Pray for patience for Ella during her recovery.

Thank you so much for loving Ella.

Wednesday, April 11, 2012

Last 3 weeks in a nutshell

Week 1:  Computer got a virus and was unusable for most of the week.  Finally got it to the shop at the end of the week.

Week 2:  Got computer back on Friday…week gone.

Week 3: Spring Break!

Yep, that pretty much sums it up.  Our computer got a pretty intense virus and was unusable for several days before I was able to get it to our computer guy.  It took a lot of work on his part, but after a week our computer was back in business.

While the computer was down we did one major activity that MUST be mentioned…Ella experienced her first circus!  She was very excited about seeing all of the animals do tricks.

Last week was Spring Break!  YAY!  Joe took the entire week off work, so we decided to get away for some much needed R & R.  Williamsburg here we come!  We attended a beautiful wedding on Saturday night (March 31st), then went to a precious 1 year old birthday party on Sunday afternoon.  Right after the birthday party we headed to Williamsburg.  Ella was very excited to get away and know that she had both her mom and dad’s full attention for an entire week!
Monday was spent at Busch Gardens.  This was our first visit to Busch Gardens, so we weren’t sure what to expect.  In the end, we all had a great time!  Ella rode a few rides with Joe and I, but many of the kids rides are rides they have to do alone, and Ella was not about to do that, so she was limited in her ride options.  We did go see 2 shows, which she loved.  While waiting for the first show to start Ella looked at Joe and said, “Daddy, when I grow up I want to be on a stage like that and sing and dance.”  This is a change from her previous life goal of being a princess.

I did play the role of bad mommy at one point.  You see, I love roller coasters…LOVE them!  Ella is a big chicken.  They had a mini roller coaster for kids in the Sesame Street section…it had something to do with Grover.  Anyway, I made Ella go on it.  Yes, I’m the mom that forced my 4 ½ year old child to ride a roller coaster.  She hated every second of it.  In fact, half way through she screamed, “Are we done yet!!!”  Afterward she and Joe rode a much calmer ride and she said to him, “Daddy, I did not like that Grover ride!”  Hopefully when she gets older she’ll appreciate all that roller coasters have to offer.

Since I’m a big fan of theme parks in general, we stayed and closed the place out (it closed at 8:00, so it wasn’t too late).  Toward the end of the day the crowd really thinned out, so Joe and I started going from roller coaster to roller coaster and taking turns riding them.  The first was The Griffin…all I’ll say is that at the first drop I stopped breathing.  It was like my body couldn’t do anything…not scream, not panic, not even breath.  IT WAS AWESOME!!!  We rode all of the roller coasters that were operating that day and enjoyed having a bit of a flash back to our youth.

The next 2 days in Williamsburg were spent relaxing and walking around Colonial Williamsburg.    It was so peaceful and Ella loved seeing all of the animals.  While we were walking around she said, “Mom, there sure is a lot of horse poop around here.”  She was right.

We came home Wednesday night and spent all day Thursday doing laundry.  Friday morning we headed to New Jersey to spend Easter with Joe’s family.  Friday was an Easter egg hunt at Grammy’s house, and Saturday was an Easter egg hunt with cousin Andrew at his other grandparents house.  Ella racked up on candy!  Then, Sunday morning not one, but 2 Easter bunnies came to visit!  Mommy had talked to the Easter bunny before our trip and let him know that we were going to be at Aunt Trishy’s house.  Meanwhile, Aunt Trishy also notified the NJ Easter bunny, so Ella had candy from both the VA Easter bunny and the NJ Easter bunny…that makes for A LOT of candy!  Add that to the candy from 2 egg hunts and you have a 4 ½ year old with way more candy than she can possibly eat!

All that to say that while we’ve been MIA for a few weeks, we’re still here and doing great!