First Surgery and Christmas!

This update is long overdue.  We've had a phenomenal few months since my last post.  Lukasz is making drastic strides everyday and the differences we see in him from week to week is crazy. He's actually running all over the house!  He plays with intricate toddler and preschool toys, pays more active attention to his siblings, engages in their antics (to their absolute thrill), mimics more and more activities and started saying "uh-oh".  We are especially happy about that.  The speech pathologist is excited, too.  She says it means he is in the sound mimic stage and will likely start taking off with more words soon.  Just yesterday he mimicked "e-i-e-i-o" when we sang "Old McDonald".

We hope she is right but we admit he has no problem making his wants and needs known LOUD and CLEAR. He signs and if he doesn't know the sign, takes a hand and drags the adult in the direction of the object of his desire.  And now that his can communicate we have learned he is very particular in his eating.  He fusses in a way that we open three or four kinds of baby food (or other soft food items) and then directs which he wants first with pointing and screaming (working on that), takes a bite or two, then directs to the next few bites he wants, and so on. He can also feed himself now which is great.  Although, the little stinker is sometimes just in the mood to be fed.

Medical Stuff

Lukasz had a tube put in his ear in September.  He was "papoosed" because every Dr we saw recommended avoiding anesthesia except for major surgery.  We couldn't let his hearing continue to be impaired by the effects of cleft palate on the muscles that control the Eustachian tube (a cleft permanently impairs the function to prevent fluid build up in the inner ear resulting in repeated ear infections).  The procedure, from the time they took him from my arms to bringing him back to me, was less than 10 minutes.  His hearing was dramatically improved and the Dr told us he suctioned massive old mucous out and expected us to see a lot more drainage.  He was right.  We even went back because he had drainage past the stated number of days and the Dr said it was still all the nasty old stuff that had built up. It's all better now.We got the CT scan report (images in last post) and saw Dr Jeffrey Marsh in St. Louis for his reconstruction opinions which was basically the opposite of Dr Fearon's.  Dr Marsh recommends jaw surgery to open Lukasz' airway and relieve his sleep obstruction/apnea IF a tonsilectomy doesn't resolve it.  Otherwise, he'd wait until 3 or 4 years old to do the upper half of his head. Dr. Fearon recommends doing head now, jaw at 3 or 4 years old.  So we have a lot to think about with two very respected Cranio surgeons recommending complete opposite surgical philosophies.

First Surgery

Because Dr Marsh is more conservative and Lukasz is doing so well, we decided to at least see if a tonsillectomy would help the sleep issues.  Plus, Dr. Marsh wanted an endoscopy (a look at Lukasz' airway) before he did surgery because if Lukasz' airway had other anomalies affecting his sleep oxygen levels, Dr Marsh would not do the jaw until 3 or 4 yrs because he doesn't like to do surgery that provides no benefit.We saw Dr. Digoy, an ENT at OU Children's Hospital.  He is an amazing, doctor.  Instructed his surgery scheduler to over book him so Lukasz could have his surgery before the end of the year (Dec. 27) so we could take advantage of already meeting our deductible.

Walking into surgery.  Note Lukasz' not so happy face
compared to my optimistic smile.

Turns out that Lukasz' adenoids were causing 100% blockage, so they came out, too.  Also, they found a condition caused by small jaw that during sleep collapses the esophagus on the voice box causing blockage.  Dr. Digoy said that in 3 mos we will repeat the sleep study and if there is still a problem we can try to remove some of the tissue around the voice box.  He really wants to prevent jaw surgery because of the potential complication of the jaw becoming locked.  Something we had never heard of!!! And we totally agree with avoiding major surgery when Lukasz is doing so well intellectually and a locked jaw would really stink.

Despite the surgery going very well,  Lukasz was pretty hysterical and clingy after the surgery.  I stayed with him and held him, hoping he'd go to sleep sometime.  He didn't sleep until 10:00 pm when he just collapsed.  Then his O2 stats dropped and stayed down.  We had to put him on oxygen but every time the mask went near him he'd wake up screaming.  Finally, the wonderful young nurse assigned to us thought of a "blow-by"--an open 1" diameter tube blowing O2 softly at his face about six inches away.  She wrapped the end of it in several washcloths to weight it and allow for wedging into the crib rails to hold it in place.  Worked like a charm but Lukasz moves all over in his sleep so I had to stay up and move it around whenever his O2 dropped.  Exhausted mommy!

The worse news was that the Dr. on call that night was totally worried about Lukasz and adamant that we would stay other night.  We did. 

Even though we had to stay an extra night, Lukasz made the most of the extra day.  He dragged me out of the room by the finger to walk the halls on our floor over and over for TWO hours!  He made friends with everyone, trying to get every adult we passed to take his opposite hand and walk with us (his favorite thing--walking between 2 grownups and their ring fingers). When he was successful we walked and he laughed and laughed.  When the adult couldn't because they were working or had their own child in a room, his threw himself on the floor in a and cried getting all kinds of sympathy and regret from the adult. New behavior for him but I think it's age appropriate.  Whether they walked or not everyone made friends with him.  The nurses loved him.

The second night went much better.  He only needed the O2 once.  And his levels stayed above 94 most of the night.  His sleep study was much worse than that. The nurse woke him up at 5:15 am doing vitals so we were up walking the halls and cafeteria for 2 hours again.  Lukasz definitely enjoys attention and having grown-ups fawn over him.  And his crooked smile is pretty good at getting a smile out of people who have a lot on their minds.

We were home by 9:00am. And we have seen such a change already.  He seems so much more alert after two good nights of sleep and his sleeping is much quieter.  The real test is if he starts really growing and gaining weight which was the real problem with the sleep obstruction.  And the threat to brain development.

First Christmas!

Last but not least we had a great first Christmas with Lukasz.  There was a threat of being snowed in and an ice storm on Christmas Day so we went to my parents' house Christmas Eve evening.  We had planned to see Matt's parents and his mom's "Polish" themed Christmas on Christmas Eve as well but his mom was sick and didn't want Lukasz to get sick before his surgery.  Christmas Day was freezing temperatures and icey roads so we were glad we at least saw my parents.

The kids loved all their gifts and helping Lukasz enjoy his first Christmas in a home with a family.

All in all, it's been a great two months.

Lukasz' Head

Images of a Bare Skull

CT Scan

We went in on Monday (Nov. 5) for the sedated CT scan with 3d reconstruction.  However, they told us that there had been an error in scheduling because they only do sedated CTs on Tuesdays.  They said that they had already talked to our Family Doctor for another "more clear" CT order and scheduled us for their only opening on Tues. But we needed to be warned that the PICU (Pediatric Intensive Care Unit) doctor may not be comfortable sedated a child with "complicated" issues like Lukasz, in which case they would "try" to get an MRI anesthetist to put him under general.  And Lukasz could come in at 2:00 p.m. but could not eat after 6:00 a.m.  That's crazy for this eating machine!  Especially since he's learned how to sign "eat" and is VERY demanding about it.

On Nov. 6, I woke Lukasz up at 5:45 a.m. and fed him.   All day I was faced with insistent "eat" signing and pulling on my arms and legs with with pointing to the kitchen.  He was "starving"! At 1:30 we arrived for the CT.  As expected, the doctor listened to his cute little-engine-that-could breathing while he played with the exam room toys and said he thought with his breathing and history of sleep obstruction that sedation was not worth the risk and he would talk to the MRI anesthesia people but we should really think about it because surgery isn't scheduled yet and it is an elective CT (meaning "it's not as if he was in a car accident and the CT is an emergency necessity").  As our Family Doctor, who is also a dear family friend, said, "They were trying to gently talk you out of doing it at all because they were uncomfortable, but they didn't know they were talking to Susan Kane."

I told them I was fine with whatever anesthesia they needed to do because the surgeon needed the CT scan to look at on Monday, Nov. 12, and would schedule the surgery ASAP after he saw the CT and Lukasz.  Then, I had a brilliant idea.  I asked how long the scan would take.  "About 5 minutes."  And I said, "Well, he had an ear tube put in a few months ago while being "papoosed" because we did not want to wait for his major surgery to put the ear tube in to clear up his hearing and we knew he would have a local anesthesia and the procedure would only take 10 minutes.  If you want to "papoose" him, we are open to that since it would only be a few minutes."  The doctor, the nurse and the CT tech gave me such a look of appreciation and relief, you would not believe.  The doctor said, "That is a brilliant idea and such a wonderful option for Lukasz.  Sedation or general would just be such a risk for him, if "papoosing"him can keep him still enough, it removes all risk for him."

So that's what we (me, nurse and CT tech) did while he talked to the MRI anesthetist in case it didn't work.  We were done with the scan in under five minutes and before he was even done discussing options with the anesthetist!

Lukasz didn't like it, but it was over super fast and as soon as I picked him up, and showed him the jar of baby food I brought, he was laughing and happy.  Poor kid, couldn't understand why I wouldn't feed him all day after he worked so hard to learn how to sign it.

The nurse said it was the easiest CT all day. She and the Dr both said they wished more parents were open to the idea of "papoosing" as it removes the risk of repeated sedation or any sedation for kids with sleep/breathing issues.  Personally, Matt and I both think that if a procedure is going to take under 5 minutes, what is the point of putting your child through the risk of sedation/general anethesia?  Trust me, when Lukasz is a teenager and tries to guilt me over being "papoosed", I will not feel guilty AT ALL.  "One, it was safer, and, two, I knew you were tough enough to take it."

Here's what the five minute process looked like:

As you see, above, his CT scans were available immediately.  Kudos to OU Children's Hospital.  I opened the disc today for the first time to send images to the surgeon in St. Louis (Dr. Jeffery Marsh--another highly recommended surgeon who also happens to be in our insurance plan).  The first image at the top was the first I saw and I have to say that it really depressed me.  I am used to seeing his happy face and there is a stark contrast with the image of his bare skull. 

Halloween

On a happier note, lots of exciting things happening in our house with Halloween just past and the holidays coming.  We had a great Halloween, the kids trick-or-treated and went to bed fast and exhausted.  Even though Lukasz is almost two, this was probably his first "real" Halloween since most countries do not celebrate it like Americans do.  He tolerate the costume pretty well and really loved the candy his siblings were happy to share.

He got his Certificate of Citizenship in mid-October (a couple weeks past the USCIS estimated 6 weeks) so he has proof of the citizenship he got entering the US.  And we took that certificate to the Social Security office to apply for his SSN right away.  A week later he got his social security number--what's an American without a social security number?

All of Our Kids

I have been asked many times about our other adoptions, so I thought I would post a summary of how each of our other kids came to us.  I have written about it in our county bar publications but I felt I should put it here, too.  And I have been meaning to do it for so long but have been too tired to write any posts.  So, here is the history of our adoptions.

When I was 29 (end of 2005), after years of swearing I didn't want kids, the biological clock kicked in.  Wow!  I didn't even believe in the "biological clock" but I tell you experiencing it is BELIEVING it.  Overnight I became a baby/kid crazy wannabe momma.  I didn't care if I had a baby biologically or adopted a baby up through 12 years old.  I wanted kids in my house and it NEEDED to happen ASAP anyway we could make it happen!

In Oct 2005, we started the adoption process with DHS.  We didn't want to foster because we had both represented kids in the system and seen how the state lets them down by giving bio parents chance after chance for years before sending them home to their bio parents only for them to end up back in the system not long after.  We knew we could not handle the emotions of returning a child to their bio parents if we did not think the bio parents had mended their ways.  So we did straight adoption--just kids that have already had parental rights terminated.  They told us we would not get a baby, that that never happens when you go straight adoption instead of foster to adopt.  That was fine--I just needed a child!

We also started trying to conceive at the same time.  We went through a miscarriage and two failed adoptive matches--one in which a relative decided they wanted the four toddler siblings after our match and one in which the file revealed extreme psychological/emotional issues that we could not handle because we knew we would have more kids and would be afraid to bring in more kids with these particular issues.  All three situations were heart breaking and took place all in one year.  Plus, our beloved dog died.  I still call 2006 "the horrible year."  But it ended with pretty great with the placement of our oldest son.  What I  have learned is that every adoptive parent has heartache on his or her journey.

Iain-First Adoption, DHS

In Aug 2006, our worker called my husband on a Wednesday to tell us there was a baby in the NICU at Mercy Hospital who had been abandoned by his bio mom (she gave birth to him, said she wanted him adopted and then left the hospital without signing TPR).  Our worker asked my husband if we would be interested in adopting him.  He told her he had to talk to me first.  Crazy!  As if he didn't know what I would say.  I told him he needed to call her back ASAP before they gave that baby to anyone else.  He laughed at me.  I called our worker and explained that I was about 3 months pregnant (I believe it was actually 3 months the day she called!) and that due to the previous miscarriage we had been waiting until the 3 month mark to tell everyone, but we still wanted him, "could we still have him?"  She told us yes, that they had picked us.  

He was 3 mos premature and drug exposed.  Weighed 2 pounds at birth and had been in the NICU for 6 weeks.  The hospital staff was so in love with him that they had insisted DHS place him with an adoptive family, NOT foster, as termination was definitely going to be sought based on verbal statement of abandonment and lack of contact for over 30 days.  We met him the next day, Thursday, and roomed in with him overnight and brought him home on Friday.  He weighed 4.5 lbs when we brought him home.  We had breathing, sleeping and feeding issues for the first two years including 2 hospitalizations.  I had to perform CPR and call an ambulance for the first time in my life when he had been home 6 weeks because he developed a virus, stopped breathing and literally turned blue.  But he's healthy now except for requiring daily growth hormone shots to grow.

The adoption was finalized about 8 months after he had been home (6 months after termination of all birth parents rights).

Learned-Our only Bio

In Jan 2007, we had Learned.  Not only did we have Iain with his feeding, sleeping, breathing issues, but Learned somehow dissolved or otherwise disposed of all of his amniotic fluid three weeks early and necessitated an immediate c-section--in an ice storm!  But he was healthy.  He and Iain are the best of friends and in the same grade at school.

Millie, Domestic Private, and Padraig, "Embryo Adoption"

In April of 2008, we decided we wanted another child and we had not gotten pregnant.  We knew adoption would take awhile (getting Iain took a year), so we went back to DHS and they updated our home study.  But our social worker had been promoted to a different area. For six months, I tried to call, email and show up at the worker's office to no response or contact.  Turned out that she had gone on emergency medical leave almost as soon as we were assigned to her and they had not informed any of her families as they were not going to work any parent files that did not already have an adoptive placement--meaning a child placed in the family for adoption but before finalization.  The other workers had too many files, which I totally believe.  We were so upset.  All that wasted time AND all those waiting kids that wouldn't be matched to parents waiting for kids.

So, in December we transferred all of our home study info and documents to Deaconess.  In January 2009 they came to visit the home and make an addendum.

We were convinced a birth mom would never pick us since we already had two kids, even though Deaconess assured us that birth moms choose families for all kinds of reasons.  Sometimes they grew up in a large family and want that for their baby or they grew up in small families and wanted their baby to have siblings.  We were not so sure.  And when I decide I want a baby/child, I don't mean "Oh, after a few years of waiting is fine."  I mean, the minute that I feel it, it is full force and I am on a mission.

While we had been frustratingly waiting for DHS to come through during, we had learned that it would be likely impossible to conceive another child on our own.  And now, I was pretty unconvinced a birth mom would want to give a baby to a family who had two kids already.  I was convinced every birth mom who looked at our book would think just like the the pregnant teen in "Juno" who is looking at an ad for a family with three kids and says, "And besides they already have three kids. They're just like greedy little b#%@&es."

During our wait through DHS, our fertility doctor told us pretty quickly that he thought the only way we'd conceive another biological child would be through IVF.  After taking the information class at the clinic we decided it was not for us. However, we were told during that class that couples who do IVF at our clinic have three choices as to what to do with their unused embryos:  1) freeze them indefinitely for future use, 2) transfer them elsewhere for destruction (our clinic would not destroy) or 3) donate them to the clinic which would allow other infertile couples to choose them to attempt a pregnancy.  We could not believe people actually would give up their fertilized eggs (their kids!) to unknown couples.  But it was perfect for us, as we were ready to adopt anyway and did not care if we had any biological relationship to our children.

We made an appointment to talk to the nurse in charge of embryo donation at the clinic and found that, indeed, many couples donate their leftover embryos.  And there is no real process to match you up.  The nurse just gave us nameless info on the biological parents including some health history of the bio parents, race, how old, or when the embryos were created, etc, and then the recipient family simply decides which group they want. We chose a group of four embryos (they do not split up donated embryos--all related embryos go together).  After a few months of injections, on January 26, 2009, during another ice storm, we went to the clinic for the embryo transfer.  They told us only one of the four embryos survived the thaw and that we only had a 10% chance of pregnancy.

On January 30, 2009, four days after the transfer and only three or four weeks after completing all of Deaconess' requirements, Deaconess called to tell us that a birth mother had just given birth and had just chosen us to be her daughter's parents.  We were elated! And my husband joked that it was clear I would be pregnant as well because that's "how we roll" at the Kane house.  :-)

Nine months later, our son, Padraig was born five weeks early.  I know the math seems weird but 40 weeks of pregnancy is actually 10 months.

And here we are on the other side of our adoption journey to bring home our fifth child!  Just shows that if you want a large family, you really shouldn't let infertility stop you.  Single minded determination.,

Our Announcement

Finally, I have completed our YouTube video announcing our adoption officially and documenting our journey and homecoming.

Born to be brave on February 7, 2011, we know our son's life will have challenges and he will face hurt we can never know, but we will make sure the joy in his life outweighs the pain and teach him to face all things with joy and confidence.  We love him with all our hearts.

He has kept his first name, given to him lovingly by the Adoption Center director and the Judge who finalized our adoption.  He was named after both of their sons--Lukasz.  For his middle name we gave him the name of the man who married us, also from Poland and who, having fought in the Polish Home Army and survived a concentration camp, was also born to be brave.

Watch this video for a full introduction.  Try to make it to the end for the best part--our homecoming! And please share it with anyone and everyone (especially family and friends I do not have email addresses for).  It is our great hope that our journey could help more children like Lukasz, here and abroad, find loving homes.

What's not to love?

Adorable!

Hard to believe that anyone could look at that face and not L-O-V-E him.  But it's true.  Some don't.  I prefer to think they are just too afraid to look into that beautiful hazel eye long enough to see the the boy.  And I'll admit, there are times that he isn't the most handsome.  For example, when he's crying or angry.  We call it the "squishy face".  But who thinks their kid looks his best when he's angry or crying?

Just angry because I put him down.

But we still find this expression gorgeous.  He's ours.  He's happy.  He's loved.

"That"

I just had to share something that happened a few days ago.  It was the first time anyone had really ever said anything negative about Lukasz.  We've had lots of looks of curiosity, some of concern and two of actual repulsion.

But one week ago, at Walmart, as we were pulling away from the cashier, a big lady in her motorized shopping cart behind us told the the cashier, "I am just glad THAT is hers and not mine."

I was stunned.  It was one of those moments when you aren't sure if you really heard what you thought you heard or that it was really directed at you.   I was thoroughly caught off guard.  And I admit I expected it to happen some time and I admit being pretty arrogant that I would be totally ready to handle it.  But I wasn't.  When it happened it was totally out of the blue, like a slap in the face and I responded in the same momentary paralysis I would have had if a stranger had come up and slapped me in the face and walked away before I could get my bearings back.  I could not believe what I was hearing.

When I came to from the shock, I was upset.  I wanted to say, "Guess what, I'm pretty sure he'd be happy to know he ISN'T yours."  But I just kissed him and in a shell-shocked voice said, "Oh, we're so pleased to have him."  By the time I got to my car I thought, it's just how a lot of people fee--not in mean way but, you know, counting their blessings.  I mean, no one WANTS their kids to have issues and if yours don't, you would be glad they didn't have the extra challenges and burdens.  

The thing that made me sad, hurt my feelings and got my temper up was that attitude of disgust and referring to my CHILD as "that".  As if he were a "thing" a monster or a mistake of nature not worthy to be called a human being.

In Poland there were two occasions that felt sort of the same but not nearly as bad.  The first was after Matt had gone home.  I was pushing in Lukasz in the stroller and stopped at a souvenir kiosk on the sidewalk.  A couple looking at items next to me looked down at Lukasz and had the most repulsed look on their faces.  The woman tugged on her boyfriend's arm to leave. 

The second occasion was at the Christian camp, Timothy (remember him?  our agency rep's son) took us to.  Everyone was so nice there.  They wanted to hear all about Lukasz and his adoption and how we heard about him.  But just before we went out for dinner,  I was standing with Lukasz outside the chapel waiting for Timothy to come back with his friends, when a young teenage counselor came up to see the baby.   Lukasz had his hood up and she came up behind him and pulled off his hood to coo over him.  She clearly had no idea that Lukasz looked "different" when she did it.

She immediately was shocked and reeled back in repulsion, eyes wide, holding her chest and throwing her arms out.  She spoke broken English but it was clear that she was saying she thought I should keep his hood on him and that she couldn't believe what she was seeing.  This went on for about 5-10 minutes.   It was so over the top dramatic, that I stopped being offended pretty fast and had to keep myself from laughing.  She clearly had more problems than Lukasz.  I had to finally actually tell her calmly but firmly, "Honey, you need to get a grip.  Calm down.  He's just a little boy, the same as everyone."  Finally, Timothy and his friends came back and we went off to dinner.

The last really bad reaction we have received so far was from our own US Customs official in the airport when we entered the US.  I handed him Lukasz' passport and he looked down at it.  He had a look on his face that said, "What am I seeing?  This is not good," and at the same time he said, "Oooooo, wow."  Not in a very nice way.  Stunned.  A customs official?  But I just said, "Yup, our little guy has got some issues but he's going to be fine."  Then he wanted to make sure I was aware of all of the medical issues listed in the immigration/adoption paperwork.  I said, "Yes, we know all about it and have medical care in-place."  He was very professional after that.

Crazy what people say and do.  I'll post about the more typical, nicer experiences next time.

“Just Go On Out There and Let it Go”

The above quote is from conjoined twins, Abby and Brittany Hensel, in the ad for the most recent annual special about them on TLC.   I love it because it has become the way I live.  And, really, if you have a “different” child, there can be no other healthy way for you or, more importantly, your child to live.  If we can’t just let the negative stuff—looks, comments, body language---fall away and go about our lives with the people who matter (friends, family, well wishing strangers, etc.) blocking out all others, how can we be happy?  How can we teach our children to be happy in the face of those negative, cruel people?

And I think it is important to also say that that quote, for me, implies a kind of self-imposed DECISION to NOT assume that every poorly worded comment or awkward, sideways glance rises from ill-will or intended cruelty.  I even go so far to say that maybe 1 out of 1000 such encounters arises from ill-will or intended cruelty.

My Experience

Lately, I have been thinking about my life before, during and after the decision to adopt Lukasz.  Specifically, how did I think, respond or talk to parents and children who look different.  Now that I am a parent to a “different” child, how do I want other parents to talk to me and how do I want to respond. 

The most important thing I realize from experience is that when you don’t have a “different” child in your life, whether he/she is yours, a friends or a family member’s, you have no context for what the “right” words are, no idea what the “right” way is to approach such a child and his parents, or what is the “right” way for your “normal” kids to act around them.  The result is a hyper-sensitivity and fear of saying the wrong thing and even more so of what might come out of your children’s mouths.  In turn, your behavior often manifests as avoidance, at best, or, at worse, fear, repulsion, judgment and, sometimes, cruelty, when you have no intention to come across that way.

I can only speak from my experience on both sides of this issue.  And I can only speak from the experience of a parent who KNEW her child would be “different,” and had the opportunity to prepare mentally and emotionally before he joined our family.  Not to mention the amazing amount of reading I was able to do before even meeting him.  Oh, and the fact that I am so often distracted chasing down four other additional kids that I don’t even register stares and comments from people I pass in public.

But the above quote is my basic truth.  I go out there with the attitude: 

“When all I had were “normal” kids, I never intended my behavior or words to be hurtful, so I will assume the same of everyone who looks at or talks to me in a way that centers around my child.  Everything else, I am just going to leave behind me so I can enjoy our lives together.”

Everything you retain in indignation, outrage, anger or hostility will eat away at you.  Let’s face, you’re likely to never see these people again.  If they are people you see everyday, simply tell them you are going to assume a mutual wall of silence about your children and walk away or “answer” your phone anytime they breach it.

It’s All About Attitude

So here it is, the mysterious answer to the question, “Uh, where do I look, what do I say and, OMG, what is my kid going to say to her about her kids?”

First, take a breath and recognize that these questions come from the thought, “But for the grace of God go I.”  Don’t worry, in my opinion, there is nothing wrong with that thought.  We have all been taught to count our blessings and it is TRUE that your child may have an easier road medically and/or developmentally than mine.

Now, take another breath and know that you would love your child no matter what he or she looked like, no matter what extra challenges or differences he or she had.  More importantly, understand that we parents of “different” children only know our child as he or she is.  If we are out at the Zoo laughing (or pulling our hair out as any parent), or at the store saying, “Stop that!” and “Sit down in this cart right now!” and also, “Ok, we’ll get you that toy,” you will know that we are loving our child just as you love yours and experiencing all the “joys” of parenting you do.  And we are out in public just like you.

So, you can look at my son. He looks different from anything you have ever seen.  Your brain needs time to process that and I understand.  Go ahead and look straight on. You CAN stare!  I understand, I have been there.  Just maybe, while you look, say “Hi” to me and that you would “love to say ‘hi’ to my baby.”  It’s only polite, you know.  Once your brain processes, “Oh, just a boy who only has one eye and one ear” I know you will be fine.

Finally, just talk to me and treat me like you treat any parent you see out with their kid. It's all about attitude. It's definitely OK for your kids to come up and talk to our kids--curiosity, friendliness are fine as long they are not being mean. Oh, and your kids are OK to ask why my baby only has one eye and one ear, it's even ok for them to say he looks funny or (GASP) “scary”. To them, he does look funny or even scary--they have NEVER seen anyone who looks like him and that is what most little kids define as "funny" or “scary”.

You’ll see in my next post that in every case I have been approached by a child, every child who asks about the way Lukasz looks simply responds to "He was just born that way, like you were born with brown/blonde hair" with "Oh, okay" and total acceptance, then happily continues their day.   Maybe not immediate acceptance, sometimes they hover around and once they have their bearings they accept him and start playing.

The last thing I want to say to parents/individuals who have no experience with “different” children is this:

I'm not ashamed of my child, please don't teach your child to be by acting as if he's someone to tiptoe around and look at sideways. I invite your and your child's conversation. So does my son.

Defensiveness versus Acceptance

Now, I realize that as my “baby” gets older, the kids will become more cruel.  That’s just the nature of kids—as they get older they learn more and more of adult biases and cruelty.  And I know that people use the wrong words and look at “different” people from across the room and sometimes throw what is interpreted as a judgmental look at us parents.  But let’s take a second to breathe and recollect before we respond.

For me, I am hoping that my openness with parents and children now will teach Lukasz that I accept him and that there is nothing to be defensive about as far as his appearance and medical issues.

Personally, my opinion is that if you are constantly on the defensive with people, that if you always lash out immediately as “mama bear” it appears that you feel your child is something every “normal” person would attack or act with ill-intentions.   One, there is nothing wrong with my son.  He is just different.   He was born that way.

Two, I refuse to believe that the majority of people intend to harm my child or myself—emotionally or physically.   OMG, if I had been held to every “foot in mouth” moment I would have been in a self-loathing humiliation hell since age 7.  As awkard, clumsy and downright oblivious as I have been in my life, I am willing to cut people some slack for using the “wrong words” or staring at us.

For example, is it appropriate for people to ask, “Now which one is your ‘real’ child?” when wanting to know which of our children is our biological child?  NO!  But they do not know that.  They are not INTENDING to imply that we love our adopted children less—they just DO NOT KNOW the CORRECT way to ask.  Why should I get upset and insulted and carry that feeling around with me?  I know many adoptive parents that go on LONG internet blog/forum tirades about this very experience and I just don’t get it.  Just let it go.

People, by nature, need to understand “different” and “why.”  I have no problem with that.  It doesn’t make me angry.  It doesn’t make me sad.  I love my child and I love talking about all my kids—how they came into our family, why they look the way they do, what grades they are in, etc.

If my child had disruptive behavioral or cognitive issues and no physical differences, I would explain that to people in common public areas (the library, mall, doctor’s offices, etc) who are likely to be disturbed just as I would explain with a smile of good will my other kids’ poor behavior due to waking up early from or missing a nap, or due to an illness.  I find that usually, most people, if you mention an actual diagnosis or reason are pretty understanding.  However, people are not mind readers. 

I mean really, if you had no experience with behavioral, neurological or mental issues in children and were standing in an elevator while some lady was letting her “normal” looking kids [insert, for example, Autism spectrum behavior here], wouldn’t you give her a look?”  Let’s be real.  Do we as parents of “different” kids really have the right to judge parents of “normal” children or childless people?

People who do not have “different” children have no more experience interacting with “different” children than we did before our children joined our families.  It is unfair of us to expect them to know the sensitive language to use or how to approach us or our child or how to interact with us.  We have the experience, they don’t.  Let’s cut them some slack and assume they are the same well-intentioned people we were before we had our awesome kids.

Anyway, that’s my humble opinion.

In my next post (it’s super late now), I will share many of my experiences with Lukasz out in public.

Great News!

We had our early intervention program's physical therapist out here yesterday and I am happy to report that she believes Lukasz is ON TARGET for his age!!!!  Amazing, given the institutionalization and his physical differences.  I guess the ticker is working just fine.  Now we can devote our attention to his vision, hearing, jaw and cranial issues.  Oh, and speech.  He's still just making sounds, but this is understandable considering everything.

Today we see another ENT to find out if he would be willing do place Lukasz' tube in the office under local anesthetic rather than in a full blown surgical setting.  We'd like to not wait 2 months for the tube to be placed during Lukasz' big surgery in November.  Two months is a long time in the speech development world.

Time Flies!

We have been back for a week and a half.  In some ways it feels we have been home forever and in others, like we just arrived yesterday.  The boys (Iain and Learned) started Kindergarten, we visited the surgeon just days after getting home, Millie and Padraig run me ragged making sure they are not too rough with Lukasz, Lukasz likes to be fed round the clock like a newborn, we took Lukasz for his first visit to Science Museum Oklahoma and he visited our family physician yesterday for the first time.

Iain teaching Lukasz who is watching intently.

Copying his big brother.

Dr. Jeffrey Fearon, Craniofacial Surgeon, Dallas, TX

On August 2, Matt and I drove to Dallas for the consultation appointment with Dr. Fearon that I had set up in April.  Unlike any doctor Matt and I have ever come across in our experience as patients or attorneys, Dr. Fearon had provide us with written opinions of Lukasz's medical records via email every time we got new and/or updated records from Poland.  We appreciated his candor and the phenomenal recommendations of other parents and various craniofacial organizations.

      Cranial Pressure

Dr. Fearon told us that he has found in the past that with the children he treats who were adopted, surgical complication rates were higher than his normal complication rates.  However, once he started recommending that that adopted children spend a minimum of three months adjusting to their new home, they did much better due to the improved nutrition, development and immune system.  So, told us that he would prefer to wait the three months before performing the craniotomy to correct Lukasz's fused cranial plates or any other surgeries that may be necessary.  He also believes in doing as many necessary procedures as possible at the same time so children do not have to go under anesthesia multiple times. 

This makes sense as far as the nutrition/immune system but we were very concerned about intracranial pressure.  Dr. Fearon assured us that Lukasz's open cranial area did not demonstrate a level of pressure to be concerned about--that it was much better than he thought from the CT scan we sent from Poland.  Matt asked what to watch for and he told us for the derma (sp?) of the brain protruding from the soft spot BUT he said, "It's not going to happen.  It would have happened already if cranial pressure was going to be an issue."  Very reassuring.

    Apnea:  Lukasz sounds like a freight train at night.  

Dr. Fearon was much more concerned with the issue of is sleep oxygen levels than the intracranial pressure.  He recommended that we have Lukasz undergo a sleep study as soon as possible because if he has low oxygen levels he will need a tracheostomy.  Of course, I knew this was a possibility as many children with Lukasz' various craniofacail issues require a trach, but both Matt and I took deep breaths at that.  Dr. Fearon went on with very rational reasoning that, "Although no one wants their child to have a trach, if he is not getting enough oxygen, you WANT him to have one--it's too important for brain development to not do what you need to do to make sure the brain gets the required levels oxygen."  Rational, but we want to avoid it if we can.

He explain that because Lukasz' is missing one side of his jaw and his throat is placed differently due to the lack of development of the right side of his face, the best position for him to sleep is on his stomach.  If he sleeps on his back or side, his jaw and tongue fall back towards his throat obstructing his breathing.  Dr. Fearon suggested, the "lazy man's cpap" of tying a tennis ball to the inside of the back of a footed sleeper with a rubber band, then every time Lukasz turns on to his back in his sleep, he will naturally turn back to his stomach.  We will be trying this to get him oxygen at night without the trach and to "cheat" on the sleep study.

If the sleep study results are bad enough, he will go ahead with surgery earlier than 3 months to place the trach and do the craniotomy (and anything else).

Another thing we like about Dr. Fearon is that he believes that if you can get good, more affordable services close to home, you should do it rather than travel to Dallas.  Of course, there are no craniofacial surgeons of his caliber in Oklahoma but we will be getting Lukasz' sleep study, ear, nose and throat evaluation, audiological and opthamological examinations, etc., here.

     The Eye

A lot of friends and family have asked about whether a prosthetic eye could be placed in Lukasz' right orbit.  He does have a functioning tear duct.

Dr. Fearon's opinion is that Lukasz's orbit deficiency is too great to make an insertable prosthetic possible.  We may be able to do an external one.  I am very unfamiliar with the types of prosthetic eyes so I am just relating what I remember.  He suggested that we may have to consider a patch but that he would refer us to a brilliant prostheticist (?) when Lukasz is older.  

Personally, his lack of an eye is really low on my priority list.  He sees with his "good" eye and the other is just a cosmetic issue.  As far as the eye patch, he can were one if he wants to; I really have no desire to protect society at large from the appearance of his missing eye.  And I hope my indifference to the opinions of strangers teaches him to feel the same.  I have confidence that the people worth knowing in the world will be able to get used to and accept the way he looks.

     The Cleft Lip/Palate

Dr. Fearon thought Lukasz' corrected cleft lip looked really good.  He also thought the corrected palate looked OK.  We were concerned as to wether the palate had been fully corrected because Lukasz tends to have food come out of his nose and not like normal toddlers that just snort it sometimes.  Dr. Fearon says this may be because when there is some paralysis in one side of the face (like Lukasz), the muscles are sometimes weakened.

    The Jaw

Finally, Dr. Fearon said that to correct the missing lower jaw, one of Lukasz' ribs would be harvested and placed as a "spacer" (his term).  However, he does not typically do this surgery until the child is 6 or 7 as it is quite invasive to harvest a rib.  This would also allow for the removal of the trach at that time if he has to have one.

I completely forgot to ask Dr. Fearon about Lukasz' upper jaw.  The clefting of his lip and palate were so extensive that his upper jaw is separated.  When they were corrected, the surgeon did not correct the upper jaw so Lukasz has a large separation between the right one-third and the left two-thirds of his jaw.  But I am sure we will have plenty of opportunity to ask him about this.

Dr. Naidu: Our Amazing Family Physician

On Monday, August 6, Lukasz saw our family doctor for the first time.  Dr. Naidu treats all of us and there is no other doctor we have ever had as much faith in.  Lukasz gained 2 lbs since our Visa health exam just under 2 weeks ago.  Great news that the constant feeding is paying off.  He's clearly making up for lost time.  Dr. Naidu still wants him to gain 4 to 6 lbs by the time we see him again in one month.  Lukasz is 31 inches tall and head circumference 44.5 cm.  So, his weight is about the 5%, his height is 10% and his head is about 2% for his age.  Hoping that everything increases and becomes more proportional.

Dr. Naidu told us he would call in the referral for the sleep study immediately and once we had the results he would get a referral for a ENT.  However, I just got a call from the Mercy schedulers with appointments for a pediatric endocrinologist (I didn't know we were even doing that!), pediatric ENT, and information that the sleep study people would be calling me directly, as well as SoonerStart (Oklahoma's early intervention program).  So we are on our way!

Anyone in the Edmond/Oklahoma City area looking for a great doctor can find more about Dr. Naidu here: http://doctors.mercy.net/directory/profile.asp?dbase=main&setsize=6&display=Y&integrated=false&last=Naidu&specialty=13&pict_id=2011484

Lukasz' first trip to Science Museum Oklahoma!

I didn't realize the similarity between the kids' pose
and the mural until just now.

The tops were a big hit for Luksaz.  He couldn't spin them but he tried
and he loved the idea.

Last Days in Poland and Home at Last!

New U.S. Citizen, as of going through Customs/Immigration in Minneapolis.

Last Days in Poland

It only took four days to get Lukasz' Polish passport and the US immigration visa.  The US Embassy gave me a sealed envelope of documents to give to customs at our first US destination (Minneapolis).  That was on Thursday.  We had three free days before leaving for home.

We walked around Warsaw for the last few times.  I bought some last minute souvenirs for the kids.

 Repair being done to a road in Old Town Warsaw. The stones are huge.

I wanted to take a picture of Lukasz next to the stones.

to give a perspective on how thick they are but he was

having none of it. He was perfectly happy until I tried

to stand him there. I think he thought I was going to

leave him there.

Superman was Adopted.  Great t-shirt.
In our apartment's back garden.

On Sunday, we were invited to our agency rep's home for the afternoon.  Their house is in a little village outside of Warsaw and the large backyard backs on to a forest.  The translator who worked on all of our documents and her family were also there.  Ewa, the translator, has two boys aged 7 and 9.  The 7 year old was born with a disfigured left arm so it was nice to get her experiences with how her boys react to strangers' and other children's comments and stares, as well as school experiences.

Both of the boys are extremely interested in all things nature.  And apparently everyone in Poland has an interest in collecting wild mushrooms to eat.  Even the boys were very familiar with the different types of mushrooms, poisonous and edible.  They were anxious for the season to start so they could hunt mushrooms.  So, after a lovely dinner outside, we all went for a long walk through the forest and the boys picked mushrooms--mostly poisonous.

I spent the rest of the night cleaning the apartment and packing.  We woke up at 3:00 a.m. and headed out to the airport.

Getting Home!

When we arrived in Minneapolis, we went straight to Customs with everyone else and I handed the precious sealed envelope to the Customs official.  He stamped Lukasz's passport and told us that he is now a citizen, we can apply for his social security card at any time using the passport as his identification and that we will receive a Certificate of Citizenship in the mail within 6-8 weeks.  Hurray!

Starting the Journey from Warsaw.

We made it home on June 30, 2012, at about 5:00 p.m.  Lukasz was great on the plane except he really hated being restrained on my lap during take off and landing.  He was perfectly content to sit on my lap throughout the flight, it was just when he felt like he was not allowed to move that he screamed.  Which was for the 20 minutes before, during and after take off (and landing) that we had to wait for the seat belt light to go off.

Note to all the passengers who gave us dirty looks and made nasty comments about his screaming:

       If you were strapped in a car seat during all your waking hours in the "play room" for the ten months after  you demonstrated an ability to roll over and move independently, you would also resist any attempt you perceive as a withdrawal of your newly acquired freedom of movement.  The resentful silence and few hateful comments of the plane full of people during his terrified cries are an allegory for the indifference and apathy of his caregivers, specifically, and the rest of the world, generally, which fails to acknowledge the unacceptable life conditions of so many children domestically and abroad.

Awesome Greeting

Matt and the kids and both of our sets of parents were there to meet us.  Lukasz and I exited the terminal at the wrong end of the airport so we weren't in the right spot to see everyone as we came out but we all ran to meet each other.  The kids crowded Lukazs immediately.  He was so tired, he did not respond as enthusiastically as the other kids had hoped but that did not seem to bother them at all.  

I don't know why they covered their faces.

On the ride home, we learned that Lukasz is terrified of balloons.  The metallic Elmo and "Welcome Home" balloon kept floating into his face and his one eye got so big and he had such a look of terror I had to twist around and shove them back before they did lasting trauma.

Meeting their new brother.

The adjustment is a little rough.  Nothing too bad but Lukasz does want me to hold him almost all the time.  That is good as it means he is attaching to me.  And he has woken up every morning at 3:00 a.m. and not gone back to sleep until 5:30.  We're following his lead and doing our best.  We want him to know that we will be here to meet all of his needs and we know that this is his third home in 2 months and that has got to be scary and unsettling.

Yesterday I thought he had FINALLY figured out the "more" sign while we were eating lunch.  He repeated it between almost twenty bites of food.  I was so excited that he was learning to communicate with language rather than screams and pointing.  But later in the day I could not get him to do it.

Walking with their new brother.

"Helping" Lukasz open gifts from Daddy and the kids.

Edible arrangement from the Great Aunts!
A huge hit.  Thanks!