Just Can't Get Enough

Just Can't Get Enough!  To quote the Black Eyed Peas song.....

Boy I think about it every night and day
I'm addicted wanna jump inside your love
I wouldn't wanna have it any other way
I'm addicted and I just can't get enough

I just can't get enough
I just can't get enough
I just can't get enough
I just can't get enough

So that's how we feel about Philly and because we can't get enough of that wonderful city, we (or some of us) are headed back out.  As many of you know, when we met with our surgeon late June during our family trip to Philadelphia, he thought it would be in KJ's best interest that we consider doing a scar/wound revision surgery for a few different reasons:

1. Due to what he thought was probably some scar tissue having build up around her scar, if that was left alone, it could cause some discomfort and possible mobility issues for KJ in the future as she grows (and for any of you that have seen her recently, she's not getting any smaller!!!).  

2. He was also realistic in the fact that her wound isn't a "beauty" mark and the more natural it can look, the better it will be for her as she gets older in social aspects and self-confidence.  Sadly but realistically, we need to be ready for those issues with lots of the spina bifida "stuff" as she grows older that there are going to be social issues (chances are she will have little to no bladder control and who wants to be that kid in 6th grade that pees their pants...yikes....she's not going to have Billy Madison/Adam Sandler to be there for her...not that we'd want him to be her savior....https://www.youtube.com/watch?v=8Wxhqc6wdH4).  Although, as a father and seeing what skimpy bikinis high school girls are trying to rock out on the beach, maybe having a daughter who isn't keen on wearing a two piece wouldn't be all that bad!!!

Dr. Hauer made it sound like a very routine surgery that he and the plastic surgeon he does many surgery's with could do and if that was ALL they had to do, it would be a night or two at CHOP for KJ.  He needed to get an MRI done to make sure that there were no other issues (and on visual eye test he didn't seem to think there were any) like teathering of the spine that occur with many kiddos with spina bifida or cysts.  If that were the case, it would be a much more serious surgery and would require a longer stay at CHOP for KJ.  

We quickly had an MRI done at Helen DeVos Children's Hospital in July and got the results out to CHOP so they could read the MRI and give us some dates that were open for surgery.  Our hope was to get this done ASAP as the school year was rapidly approaching and I'd be going back to work and our little Peyton (are you serious, our little man is going to be in school this fall!!!) will be off to school for the first time and we didn't want to be gone for the first few days.  Our hope was that CHOP, once they received the MRI, would get back to us within a few days.....not so fast my friends, right Shawna.  Our "choosing joy" motto/mantra/theme was tested as we (Shawna) ended up having to make numerous phone calls to get the MRI where it needed to be and to get the right people getting our schedule started.  But, hindsight being 20/20, we know they are dealing with some nasty issues with kiddos and families so our surgery was probably not priority #1.  

Finally, we got word a few days ago that there was an open surgery date Monday, September 12.  We jumped on that.  It's been a gentle, amusing, interesting reminder of all of the messy logistics we went through last fall about this time in planning for the few months we saw in our future.  I think our plans are that Shawna will fly out with KJ on the 8th or 9th for her pre-surgery appointment on the 9th, spend the weekend in Philly (hopefully at one of our homes away from home, the Philadelphia Ronald McDonald House!!!), stay with her through surgery and hope to be discharged from CHOP on Wednesday and fly home then.  I'll be home with the boys teaching, coaching tennis, getting them (or having others) to Ms. Jen's (Myles) and school (Peyton)....and doing those things we did all last fall (boys only sleepovers in dad's bed...chips and cheese in the bathtub...skittle for breakfast...and the list goes on....I don't think Shawna will ever truly know what went on in her absence).  Like I said, a little reminder of what last fall was like.  

We've gone over the 1 year anniversary of getting the knews of KJ's spina bifida and all the emotions and discussions we had about what our future could look like.  Now that she's almost 9 months old, we've said a few times, "Wow, seems like so long ago."  Funny, because so many of the great people that were out in Philly, especially at CHOP, said that would be reaction a year later....that it all seemed so overwhelming going in, but we'd make it and afterwards look back and see it as just a blip on the radar.  

We're still reminded on a daily basis of what this spina bifida deal is going to be, but that blip is becoming smaller and smaller as we move further along with our lives.  Like I said, there are daily (or weekly with appointments) reminders...but that's not a complaint.  I was able to go with KJ for the first time to Mary Free Bed and her physical therapy session...yeah, a little goofy that a 9 month old needs physical therapy but we know that the earlier we get her going, the more mobility that she could have when she's older.  Her physical therapist, as I expected her to be from the reports Shawna has given me, is awesome and seemed very upbeat and optimistic already about the progress that KJ is making with her core strength and other simple toddler benchmarks like sitting up on their own, rolling over, etc. (although what does any of that stuff mean...Myles didn't walk until he was 18 months...LAZY!!! Buche or Carlson?).  She's already showing signs of being one tough cookie and reality is she's going to need to be....but it was very cool to be there and see the opportunities that are available for our population with physical disabilities...let's just say she won't be sitting on the sidelines (has anyone been watching the Olympics...well, I'm addicted and this is the first time in my life I've watch rugby for an extended period of time...and our American society worries about football players and concussions - those guys wear pads and helmets - the rugby players have nothing on for protection...well, my point was that our physical therapist said they now have wheelchair rugby and that it's like watching a demolition derby!!! - great, just the sport we'll be pushing KJ to play).  

So, that's the latest.  Look out Philly, the Carlson ladies will be taking to your streets in a few weeks, this time with no wheelchairs to slow them down.  BuTT, first we will be celebrating KJ's BUTT BIRTHDAY (that's the initial date of the surgery she had done in-utero as technically, her backside was exposed...we were told all of the spina bifida kiddos celebrate their butt birthdays) back here in Zeeland on August 31!!  

As always...CHOOSING JOY

-Jeff