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.