Another Surgery and a New School

Little House on the Prairie reproduction on the actual location; arriving at the same time a grass fire raged in the field less than 50 yards from the log cabin; putting the kids to work cleaning the house for Ma; incredible feeling of standing right where Pa and Laura stood when he dug the well; seeing Pa's fiddle in person at her house in Mansfield and so many other actual items from the stories; amazing. If you have any doubt, I definitely enjoyed it more than the kids and can't wait to go back when Millie is 10.

We have had an exciting and exhausting summer.  We sold our house, found and moved to a rent house, spent a lot of time at the pool, had another surgery, went to the Little House on the Prairie and a new school year has started.

A New House

Somehow we crammed all of our stuff into a house half the size of our last house.  We got rid of at least two U-haul truck loads of things we don't use, hadn't remembered or had out grown.  We had a 6 by 10 foot room in the basement alone that was stacked from floor to ceiling with baby stuff from 8 years of babies and a thought that we "never new when we might get another baby." Finally, decided to donate all of it with the pacification that if we adopted another baby/toddler it that we would splurge on new things.

Somehow I packed and unpacked without going totally insane.  It's smaller but the layout is so much better and we know we will be comfortable until the new house is built.

The Pool





We bought a summer membership to a local club for use of their pool and spent every moment from open to close baking in the sun, snacking, swimming and diving.  A great way for a mom of five to not go crazy with kids home all day, all summer.  Lukasz learned to paddle around the pool by himself with a special floatie that goes over the arms and under the chest.






Surgery

Home from surgery without missing a beat.

At the end of July, Lukasz had surgery to remove the skin tags on the right side of his face. As always, Dr. Kane did a great job and Lukasz recovered almost immediately after the anesthesia wore off.  I drove down with all five of the kids and our babysitter, the brave Sarah, and we stayed in a hotel the night before the surgery and the night after the surgery.  It was an outpatient surgery but Lukasz had a pre-op appointment the afternoon before the surgery and we did not know when we would be discharged from the hospital after the surgery.

The other kids were completely satisfied to swim in the pool all day while Sarah laid by the pool keeping an eye on them.  And I'll admit it was nice for me to have a few hours of quiet in the waiting room.

Lukasz woke from surgery ready to hop right back into the crazy life with his siblings and within an hour of discharge he was in the pool at the hotel with everybody else.  We were supposed to avoid the pool for two weeks but we kept his incision dry.

Body Awareness

This surgery was much more emotional than the cranial vault reconstruction in February.  I knew it would change his face.  I also knew that it was not absolutely necessary for his physical well being as his cranial vault reconstruction.  I didn't want him to think we didn't think he was beautiful.  I didn't want him to think he needed to change his face. However, we acknowledge that the reality is that we did it to make his life easier around people--so he would not be faced with repeated questions like "what's that on your face?", and maybe see a few less surprised looks.

Yes, this does sound like a surgery to conform to society; to help Lukasz "fit in". I don't mind answering the questions about his face or shielding him from the horrified face of a two year old a million times a day, so long as he never notices.  And there are things we will always get questions about and parts of his face that will never be close to normal.  His face has always been beautiful and I don't care if the world does not see that or agree, but we decided we wanted to minimize his very real pain when he does become aware of the stares and questions.

I guess this is one of those decisions that parents make everyday that we know that no matter what choice we make, our teenaged children will disagree, despise and scream about.   We are still torn and still concerned about how he will feel over this surgery and the conversations we had with Lukasz make us wonder even more.

"My Ear"

For a couple of weeks before the surgery, we explained to Lukasz in sign and speech that Dr. Kane would be cutting the tags off of his face.  We pointed and touched the area so that he would understand what part of his face would change.  We did not want him to wake up after surgery to suddenly find that part of it was missing, no matter how small.  We asked him what was going to happen and he told us by saying that "Dr. Kane cut this off" and pointing.

About a week after the surgery, I told Lukasz that we were going to see Dr. Mitchell (our ENT in Dallas) for a follow up on his tube surgery in December.  Lukasz looked at me with a scared face, touched the incision, then pointed to his good ear and said, "NO!  I don't go. Dr. cut off my ear!"  He didn't want the doctor to cut off his other ear.

I was stunned.  In Lukasz' mind, those skin tags were his right ear.  And remembering back, we always thought it was funny and cute that when he "covered his ears" he had always covered his good ear and the skin tags.  If he was putting on head phones he had always tried to put the right side over his skin tags.  Even though the skin tags were no where near the normal location for an ear.

I explained over and over that Dr. Mitchell was just going to look inside his ear and at odd times during the days leading up to the follow-up appointment I would ask him what Dr. Mitchell was going to do.  He would say, "Just look" and point to his good ear.  However, every so often for weeks he would randomly tell us, "Dr. Kane cut this.  Cut this one?" and point to his good ear.

Thankfully, he has not been permanently traumatized.  And we tease him, asking, "Is Dr. Kane mean?" He laughs and says, "Yes!  Dr. mean, cut my ear!" But now he is not afraid or sad.  And he does not mind that we are going to see Dr. Kane for his surgery follow-up appointment.

These conversations told me so much about my son.  He understood what we were telling him and could make connections between the past and future.  He had an internal body image that was fixed and changes to it could scare him.  My instinct to tell him about what would happen was right but I had no idea that Lukasz' some how biologically identified his skin tags as an ear.  In fact, they were; or would have been if his face developed properly.  I find that amazing.  I am not a biologist or doctor but to me this is fascinating.  We never told him that was an ear.  Those tags never looked like the good ear that we always pointed to and identified for him in the mirror.  How did he come to think of those as his right ear?

If nothing else, we know that it is imperative that any time he has surgery we be mindful that Lukasz is aware of all the parts of his face and how he sees them may be different than how any of us see them.

School

I know that the 2013/2014 school year is over and this is well past due, but it is important for me to share our first experience with enrolling Lukasz in a regular school.  As always, Lukasz surprises and awes me.  Why must moms worry?  And why must we always be faced with the inaccuracies of our anxieties? And why must fathers always be right when they tell us to "just relax and wait and see"?  It's infuriating when they say it and even more so when they turn out to be right.

Frog missing right eye, gift from Padraig's teachers at
OKC Zoo Nature Explorer's Pre-K

Anxieties

Since my last post, we embarked on one of the biggest and most frightening steps (for me).  Lukasz started attending "real" school. Once he turned three, he officially aged out of the SoonerStart early childhood intervention program and needed to start receiving his speech therapy, etc., through the school system.  This step has been a source of anxiety for me since before Lukasz came home. I imagined a daily gauntlet of emotional torture that I would be responsible for dropping him off to every morning.  I worked myself up into nausea on more than one occasion worrying about this.

The best possibility would be the Oklahoma School for the Deaf's extension pre-k at the University of Central Oklahoma in Edmond (where we attended the Toddler/Parent Group every Friday) but they would not have a spot for us until the 2014/2015 school year.  My next hope was that that perhaps I would be able to get Lukasz into our home neighborhood school where he is known and loved by students and staff alike. He'd have the added back-up of a gang of Kane kids to love and defend him; surrounding him as they walked down the halls, a group not to be messed with. We work very hard to instill the idea that "Kanes cannot be in any group or associate with any individuals that will not accept every other Kane".

Unfortunately, I learned that in Oklahoma City, deaf/hard of hearing children all attend a deaf education program housed within a regular elementary school.  Separate classrooms with speech therapy in groups, not individual as with the SoonerStart program.  I have issues with this program and it's implications for adequate education in the post-pre-K years but that is for another post.  

We learned that he could either attend this Deaf/HH program with a whole day of education in total communication, growing his language for hours with a half hour of group speech therapy once a week or get nothing but a half hour of group speech therapy once a week at his home school until he is old enough to attend regular pre-K and then if he can't hear and speak well enough he would go into a special education program. Of course, he would not be able to hear or speak well enough because he is hard of hearing (even medically qualified as deaf) and would not have had the intensive total communication (ASL with spoken word) for two years that he would get at the other program.  Issues with whether this "choice" complies with the IDEA are for another time.

In any event, there was not much choice. We wanted the best possibility for him so we chose the Deaf/HH program. 

Monroe Elementary School

Gregarious as always, Lukasz completely defied my worries.  He won every heart he met on the first day.  Before classes started, all the children would be sitting in a line against the wall along the hall by their classroom. Lukasz' class was at the far end of the hall. By the second day when I took him to school, he ran down the hall to shouts of "Hi, Lukasz!" and waves.  He ran as fast as he could, so excited to get to class, throwing waves randomly from side to side at the kids in the hall.  

At pick up, I pulled up to see the teaching assistant waiting with him on her lap and surrounded by 5-15 older, non-deaf/hh students talking to him.  When it was time for him to go, they all had to have hugs.

At pick-up. They see me coming.

And they have to get hugs good-bye.

I know it may be different as he gets older, but I am so happy that all those teachers and students loved Lukasz from the first minute and never made me or him feel like it was out of pity. If we are right, it maybe that Lukasz' personality wins people over and beyond his different appearance. And the added benefit beyond the positive experience?  He came home every afternoon signing things I had to look up and guess at and his speech was following along, too. Whether by speech or signing, his communication took off exponentially.

This Year

Lukasz will be attending the OSD extension pre-K at OCU this year.  And it works out really well for our family as we unexpectedly moved to Edmond in July due to an offer on our house without it going on the market.  So, I will not be driving kids to schools in different cities.

The changes and experiences of moving to an new neighborhood with Lukasz and our gaggle of five are for another post when I get another 30 minutes to type in peace. Not to mention our soon to be started adventure of building a house on our heavily wooded 6 acre plot of heaven.