Monday, February 6, 2012

Goin' Back to Cincinnati

Well, we just returned from another trip to Cincinnati.  In a nutshell, Ella is doing pretty well, all things considered.

We flew in Wednesday night and headed straight to bed.  Ella’s first appointment was at 8 am Thursday morning.  Ella is NOT a morning person.  If she could sleep until 10 every day, but stay up until midnight she’d probably do it.  As much as I’d love to fault her for this, she takes after me so I have no one to blame but myself.

Her first appointment was with the dentist.  She did a great job showing them her “fancy” teeth (that’s what she calls her teeth that have been capped).  At this point all looks good and she doesn’t need any more dental work right now.

Next was the ophthalmologist.  Nothing new to report here either.  She gets new glasses (which is good considering hers are over a year old).  Ella has specifically requested the lenses that change into sun glasses, just like her daddy has.  I also need to start lubricating her eyes more to hopefully avoid more corneal abrasions.  We already use the eye gel in the morning and at night, but now we have to do drops in the afternoon.  I’m not looking forward to that.  Otherwise her eyes look good.  A couple of small scars from past abrasions, but nothing that really concerned the doctor.

After lunch we headed to the clinic.  This is the main point of our visit.  We get to talk to any other doctor you might possibly think of, and ask as many questions as we like.  Nothing really new to report here either, other than we all are in agreement (Joe and I included) that the time for Ella to get a g-tube is drawing near.  It’s not going to happen immediately, but it will be in the near future.  As odd as it sounds, I think we’re both kind of relieved.  We knew this was coming down the pike, and the past several months the stress of trying to make Ella eat more has really gotten to me.  It’s not that she doesn’t eat…the child eats (boy does she eat!).  It’s just that it’s impossible for her to take in enough calories to do all that her body needs to do.  She can’t heal, fight infection (wound infections and regular 4 year old infections like a cold), gain weight, grow taller, and cognitively develop.  She takes in as much as she can, but in order for her to get all of the calories she needs to do all of that stuff, she’d pretty much have to eat around the clock.  That said, we both feel like that is the right next step to take.

It was great talking to all of the medical professionals and getting their thoughts and suggestions, especially on getting things ready for school next year.  It’s so comforting to have those resources.  They work with more EB kids that anyone else, so it’s great to pick their brains.

Ella had been requesting shrimp for dinner, so after the clinic we headed out to a local hibachi place.  I have to be honest…the food was good, but it was no Hana Tokyo.  Anyone in Alexandria knows that Hana is the best hibachi on the planet!

Friday our plan was to go to the hospital to get Ella’s blood work, then head out for a fun family day.  Unfortunately those plans got ruined once we had the blood work done.  Ella’s iron level was really low…really low.  This is common for EB kids and it’s even common for Ella.  She takes A LOT of iron every day (and eats a lot of red meat) and had an iron infusion after her surgery in August, but due to constant open wounds it’s really hard to keep her iron at a normal level.  So we ended up spending the day in the hospital while Ella got another iron infusion.  Ella was a trooper through it all.  Hopefully this will give her more energy and help her heal faster.   The bad news is that it looks like these infusions are about to become the norm…at least for a little while.  It would be awesome if we could get her iron to a normal level and be able to keep it there.

The best line of the weekend was while Ella was getting her iron infusion.  She had already eaten tilapia, a hardboiled egg and a big, soft pretzel.  She said, “Mommy, I’m hungry.”  I asked her what she wanted to eat and she looked at me completely serious and said, “A steak.”  See what I mean…this child can eat!

I don’t want to sound negative, but I want to be realistic.  What is becoming clear is that while Ella is doing great with her EB, there are a lot of things that are starting to catch up with her.  She’s in a lot of pain all of the time.  Her body is starting to have a lot of side effects of EB (the iron just being one).  This horrible disease is really starting to take its toll on her little body.  Please continue to pray for Ella and all the kids who fight EB.  Pray for a cure.


Linda said...

Dear Katie: Thanks for the update on precious Ella. This one brought tears to my eyes. I hate to think of children being in pain, and these EB cuties sure do get their share of pain. Finding something to ease their pain is number one on my list.
Our introduction to this awful disease was 3 years ago this Friday. Leah would have been 3 years old Feb 10th. Miss that little girl so much.
Give Ella a big hug for me. She is always, always in my prayers. Take care. Love and Peace Leah and Tabby's Nana

FinsUp said...

She's the bravest princess I know, and I wish she didn't have to be.