The State of Lukasz' Head

The Kane crew at the zoo.

This is the second post in 5 days.  Earth shattering speed here but I have to do it while I am motivated and have thoughts in my head—they so often flit in and out before I can catch them.

First, I want to correct any mistake the somber tone of my last post may created.  I realize now that it sounds as if those moments of battling negative reactions occur all day, everyday and that they are a constant pain like a bruised rib when you breathe too deeply.  The truth is that once those incidents happen; once they strike their glancing blow, they fall away.  I do not think of them again unless Lukasz mentions them (which is rare) or I am filling my husband in on the day.  I do not lie in bed at night turning these moments over in my head.

While many things annoy me, get under my skin, so many things, like these are easy for me to dismiss.  Life goes on and I prefer that it go on without negativity.  I don’t have to work at it or try; it just rolls away.  I accept that people are not intending to hurt us and children are goofy and only a product of their parents’ inability to handle uncomfortable situations.

Why carry other people’s stuff when my family, our friends, our doctors are able to carry on with a healthy smile and a good laugh?

Last week Lukasz’ surgeon mentioned that I had told him children are sometimes scared of Lukasz.  I remember having to reach deep into my dusty and cluttered mind to figure out what he was talking about.  Of course, I remembered, how could I have forgotten?  I know how.  Life went on.  Our days are filled with more joy, more adventure and new, interesting people and things.  The glad things push out the useless things.

  

And now for the happier news, as of September 2, there are no surgeries anticipated for another year!

The State of Lukasz’ Head

His head is good! In March, Lukasz had a CT scan and an appointment with Dr. Kane to follow up on his February 2014 cranial vault reconstruction.  The right side of his head had not hardened as expected so last week’s appointment was a follow-up to the follow up to see if it had improved.  Some improvement, but not as much as they would like.  None of Lukasz’ doctors were overly concerned, however. They told us they would need to place more bone on that side but that surgery could be done at any time.

His father and I had discussed the possibility of surgery before the appointment and decided that unless the doctors felt surgery was necessary immediately, we would wait.  Lukasz seems fine to us; why do one surgery when he is likely to need several more soon enough?  The doctors seemed to think that was reasonable.

It was decided that we would follow up in a year and decide on that surgery as well as the other procedures that are likely in store for Lukasz as he reaches 6 years old.  In the meantime, the focus is on his speech.  The speech pathologist has us coming in for a palate evaluation in October to watch how his palate is involved in his speech.  I apologize, my understanding is limited of what this procedure exactly is but it sounds very helpful.  Lukasz still has a great deal of difficulty making several speech sounds.  When he speaks in longer and longer sentences or full-on stories he finds personally hilarious, we often do not understand a word.  He often skips signs and goes so fast that his signs are not clearly formed.  I’d very much like to know what this little mischievous elf finds so funny about his day and I would like to see his frustration at not being understood disappear.

Next year, Lukasz will have surgery to close an opening that is reforming in his soft palate due to his growth.  I am not clear on everything else that is in the plans for the next year or so.  But Dr. Kane did tell us Lukasz would get a new ear.  More later on Lukasz’ refusal to accept that he can have two ears but not two eyes.  He both loves and hates Dr. Kane respectively.

During the entire appointment, Lukasz was taking some fantastic photos of the team.  So much joy in those people.  Wish I could post but I don’t post photos of non-family without permission.

Fun Fact: Third Row Seats are Popular to Dallas Thieves 

Our car was broken into the night before our appointment.  Just another unexpected adventure.  Nothing stolen but we learned an obscure fact about Dallas, so it was all good.

We stayed in a pretty nice hotel just down the highway from the clinic but the parking lot was a narrow strip between the hotel and the highway.  We went down to leave 15 minutes before the appointment--the back hatch had been forced open, the car seat had been tossed, and the fourth row seats had been partly pulled out.

The hotel manager asked what kind of car I had and then if they had taken the third row seats.  I told him it looked like they tried.  Apparently, third row Escalade seats are poplar with thieves. They didn’t expect the unwanted fourth row seats that Matt put in before our epic ten day road trip, though.  Even we can’t get them out with two people and a couple of hours.