Wednesday, August 14, 2013

Cincinnati…our annual summer trip

We just got home from another trip to Cincinnati.  It’s always a bit awkward when people tell us to “have fun on our vacation.”  First off, it’s not a vacation.  And second, while it’s always good to go and meet other wonderful EB families and get much needed information from Ella’s doctors, our visits to Cincinnati are not fun.

The more we go to Cincinnati, the more often we go with 2 or 3 specific issues to address, and the rest is just icing on the cake.  This trip our 2 issues were 1) stronger pain meds for bath time, and 2) reevaluating her caloric intake.

Thursday started off with a trip to the dentist.  This actually worked out well because Ella was fasting all morning, so her teeth looked as good as they were going to look.  This was a good visit!  While she does have a small cavity on one tooth, and a couple of other issues they want us to watch, overall they were really pleased with how her mouth looks.  We’re really fortunate because even though Ella’s mouth was among her worst areas when she was on a bottle, now we’re fortunate that we’re able to use a gentle electric tooth brush on her teeth and get things pretty clean.  The dentist was pleased with how things look, so this made us happy.

Next Ella had a Dexa scan.  Nothing too exciting and we won’t know the results for a few weeks.  Basically it’s an x-ray of her spine to see what her bone density is.  The whole thing takes about 1 minute so it’s an easy visit.

Third she had a barium swallow.  She hasn’t had one in 2 years so we weren’t sure what to expect.  Fortunately since she’s always so hungry by the time we get in there, she’s really compliant and drinks the liquid without an issue.  The scariest part for Ella is that this is also an x-ray and she has to lay on an x-ray table with this little “tent” type thing over her.  She handled it like a champ, but it was definitely the most unnerving part for her.  The good news is that from the initial look her throat looks great!  It hasn’t regressed back to what it was 2 years ago and she has no problem swallowing or getting food stuck in her throat.  Again, we won’t have the official results for a few weeks, but as an initial assessment this was the best we could hope for.

We headed downstairs to grab a quick lunch at the cafeteria, then off to get a quick blood draw (if there is such a thing) then headed up to the EB clinic where we spent the next 4 hours sitting in a room meeting with doctor after doctor.

All of the visits were good.  Overall, Ella’s skin looks good right now.  Our biggest issue is that she’s not gaining any weight (again).  We’ve been put on a new regime where I give her an entire avocado (blended of course) at night through her g-tube and in the morning I’m going to start giving her full-fat Greek yogurt.  I am also going to see if I can gradually increase her pump feeds.  I tried to increase them in March (April?) and she didn’t respond very well, so I’m going to go up VERY SLOWLY and see if we can get her stomach stretched out and willing to accept more food.  Let me just say that this whole having a too skinny kid thing is for the birds!  I know there are a lot of parents who constantly worry about their kids being overweight, but I can assure you that the flip side is no picnic.  Joe and I are always praying that baby #2 is BIG!  We have 3 friends who have had babies recently that are over 9 pounds and we’re praying to be in the same category.  I know it sounds crazy, but I told the nutritionist that I don’t want to have to see her about weight gain for 2 kids.

Friday morning Ella had her visit with the Ophthalmologist.  She does not like getting her eyes dilated, so that’s never fun.  We got a new glasses prescription and look forward to picking out some cute new frames.  The bad news is that I need to be more intentional about patching her left eye so that her right eye will get stronger.  It’s hard because I don’t want her to have to wear an eye patch out of the house.  People stare and ask questions all the time as it is.  I don’t want to give them one more reason to stare.

Finally Ella had an ECHO.  This sounds terrible, and it kind of is considering I have to unwrap her torso and she has to lay on a table for an hour.  Unfortunately she has a pretty large wound on her chest which can complicate things.  Fortunately that’s the only wound she has so the rest of her torso is clear.  Once we get things unwrapped and the sonographer gets started, it’s actually one of the more enjoyable visits.  Ella laid in the dark room and watched a movie while Joe and I checked email and facebook, and chatted with each other.

After that we were finished and could move on to the second part of our trip…VACATION!!!

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