A boy who rocked my world in a 2014

Ok...now that I have your attention with that title... ;-)

We have officially had Luke in our family for a year!  Before I get into the past year, I wanted to recap how we got here: 

• In 2012 we welcomed Emma to our family
• In 2013 we welcomed Jake to the family
• In 2014, we welcomed Luke to the family

You would think we had this 'new parent' thing down pat.  Well, apparently, that was not really the case..

As many of you know, Luke came to us angry, sick, and confused. For the good part of 2014, this kid was on constant alarm. He was in fight or flight mode every day.  His blood pressure regularly dangled about 120 (which is dangerously high for a child).  He would scream and yell when he woke up -- I mean every single morning. And every single nap.  He would wake up and you could see it on his face "oh no, you people again?!"  He would throw his food in anger to the ground because we didn't understand what he wanted.  When he was really pissed, he would give us the Chinese 'index finger-hook' symbol for 'die' (see here for more information on that crazy thing!).  This kid just plain did not want to be with us.  He wanted to go to what he knew - his foster mom, his foster sister, his home. 

All that said, since Thanksgiving (about 3 weeks after his last surgery), Matt and I see a new boy.  A boy that loves us. A boy who wakes up and then says 'brother?' and goes to Jake's room to look for him. A boy who pushes Jake a plate of donuts to make sure he gets one before taking one himself. A boy who wants to teach his little brother how to put on his coat.  A boy who loves to read books. A boy who loves hugs and wants to give them to me when I come home from grocery shopping.  A boy who is healed. 

I don't know if Luke turned a corner now because we have been home a year, or because his final surgery is over, or because he is almost 3 (ie leaving the terrible 2's). In the end,  I don't really care why we are leaving this phase.... I just know that this boy has redeemed my soul. And my love for him is more overwhelming then I ever could imagine.

Some people say that I am 'pro adoption'. I am actually not. I am pro the reduction of orphans.  My preference would be for that to happen upfront in the process -- before the child is abandoned. But once a child is abandoned, adoption is the redemptive action that brings wholeness to the child.  It  understood this fact a year ago but I am now realizing that it also brings wholeness to the parent as well!

Reflecting on 2014, it becomes obvious to me why Luke was chosen for our family. We need to grow, to be challenged and stretched. Most importantly, we needed to learn to depend on God.  I can't say I was grateful for that opportunity during the year but I certainly am grateful now.  Now we have a son who we love, who is healed, and, in addition, I am much closer to God then I was a year ago.  I think that was His point the entire time perhaps.  Have I made mistakes this past year with him? You bet.  But I can literally see His handiwork shaping and molding me to be a better human.  I am not done growing yet!

I also should mention.... when we brought our 4th child home, I was so worried that my other children would have to 'give up' something.  Give up playing a sport, give up their bedroom, give up time with mommy, etc.  The reality, now that we are home, is that Luke has taught them so much more then anything they had to 'give up'. The girls now understand hurt, compassion, how to grow in  love, orphan care, and even the art of redirection of a toddler.  :-)  My 4 year old asks about the orphans left in China regularly and what she can do for them. She wants to make the world a better place.  I mean adorable, right?!!

For those of you just home with a new child (biological or adopted), keep up the good work!  Parenting, toddler life, adoption, and special needs are challenging. But that is the point, you will come out the other end a stronger and better person.

Merry Christmas from the Lillie Family!!

Oh how I miss that cleft!!

 

One year ago today, flying home from China with Luke!!

Good news from the ENT!

I just want to take a minute to celebrate the fact that this little guy passed his first hearing test yesterday!! There were a few slight variations from ideal hearing but the audiologist said it still fell in the normalish range. The ENT confirmed that his tubes look good too! 

We are so darn excited to, hopefully, see this kiddos mood improve as his ears continue to feel better!!  

Funny enough, jake - my 16m old - is getting tubes placed tomorrow. He has had ear infections up the wazoo so hopefully this saves me from the painful ad hoc doctors visit during walk in hours with 4 kids in tow.

The good news is we love the boys ENT doctor at U of M. After seeing Luke in the afternoon yesterday, we ran into him at the pool yesterday evening. We will see him again tomorrow morning with jake. Hopefully that's the last time for a few months!

But he is ok now, right?

These are the questions we get asked a lot. 'He's fine now, right?' Are is surgeries done?'  'Well he looks great!'
 
The reality is this:
 

• Luke has gone under 3 times this year for  8 different procedures.  He has 2 more scheduled sedations with one extended hospital stay in November.
• Luke has failed all of his hearing tests except for his newborn hearing screen (ABR). Meaning his permeant hearing is likely intact but his ears are so messed up all the time he can't actually hear anything. 
• Which leads us to speech...Luke's speech is delayed behind by 15m old.  When he talks he sounds hearing impaired for sure. We have speech twice a week for an hour each.  The goal is to get him speaking but not everyone agrees on how to do that - the dr says no signing, speech pathologists say signing helps alleviate frustration. What's the 'right' answer? There prob isn't one.
• Which leads is to frustration....Anyone who has spent time with Luke knows this, Luke is not an easy kid to parent. His anger trumps all and we run around trying to accommodate him and keep him knowing he is loved. He bites, throws, and hits all of us. Including my 15m old.  It's not always this way - We can see him changing..the more love we give the less aggressive he is but it's not easy.  We know the frustration is not his true identity and we are doing our darnedest to turn that around.
• Luke has food pouring out of his nose all day long. The dr asked that we actually stop wiping it constantly because his upper lip was so raw it was prohibiting healing of his lip repair. So, yes, we know foods coming out of his nose. Please don't say gross or point it out. We are aware and have bigger fish to fry.

So what is next?

• At the end of July, if lukes ears still are not functioning, they will finally fit us with a hearing aid. I am begging for it at this point. Anything that will help bring down his frustration level is welcome.
• Luke just left the house with hubby to go to the ER. Poor kid got his third set of tubes replaced 10 days ago in a last minute surgery and, since, has had green snot spread through his nose, to one eye, then to both eyes, and now to his lungs with a seal like bark.  He screams when we try to clean his ears like they tell us to. Owie is one of 5 or 6 words he says clear as a bell.
• In the future we have 5-7 more surgeries, at least. It's so many and it's hard to keep track. And the success rate on surgeries, specifically palate repairs, is not great.  So I would guess 5-10 more sensations before he is 16.  Here is an overview of the timeline for a kiddo with the best care born in the US.

 
In the grand scheme of things, yes he is adjusting. But this is anything but easy. His cleft is anything but cosmetic. It has caused him sickness, delays, pain, and frustration. So when you see him scream, run, throw, or hit, please don't judge him or us. He is such a lovable kid deep down. It just takes a lot if work to peel off that frustration layer to really see him. And you may only see him for a few minutes. But he is so worth it.

Holding his ear saying owie (while watching toy story on dad's phone)

Now officially one punching bag!

Luke just got out of 4 hours of surgery! This kid got the work up again and rocked it! 

He had an ABR that showed normal hearing in one ear and slightly under normal in the other. We will continue to watch his hearing and he may end up having him wear a Soft Baha band - 

http://www.firefliesandjellybeans.com/2012/05/can-you-hear-me-now.html?m=1

at some point to help his hearing in the short term, until the fluid in his ears stops. We will follow up every 3 months for a year with our U of M audiologist.

He had a tube replaced in one ear - they put in a titanium tube, pretty cool! Apparently they work better sometimes!

They put a steroid shot in his lip to reduce scar tissue. I think his lip will look better and perhaps this is something we can do at home in the future.

They repaired his soft palate completely. He now has  one 'punching bag' uvula - instead of the two split uvulas he had this morning. 

His hard palate closed 40 percent in 3 months. Amazing!! We will be back in December for the final palate repair. 

He is in some pain but we are staying on top of the medicine! Our nurse in fantastic. 

Thx for the prayers!

Christy

1 hr post surgery

Immediately post surgery. Kinda a sad pic, he really is doing well, all things considered! 

Luke at 14 days post surgery / jake 11 mos

14 days post surgery ...Amazing, right?!

14 days

7 days

4 days

Here is my other cutie yesterday .. He is now officially 11 mos!!

I just love my boys !!!

10 days post surgery

We are 10 days post surgery and Luke's nasal stents have fallen out. :-(He was playing and bumped his nose and broke the stitch that was supposed to last a month. Clearly that didn't happen.

Given the early fall out, his nose will more then likely not be perfect after everything heals up.  He is definitely going to need to have a nose job when he is 5. Not a huge deal and we will be able to do it before kindergarten.

He is getting back to his normal happy camper self. See a few pics below!!

1 week post cleft lip surgery

We are 1 week post surgery and things are going well. Like has these crazy looking nose Stints in his nose that will be there for the next 3 weeks. They ensure he can breathe, even if he swells. They also catch a lot of snot (and food) from a 2 year old. 

We just weaned him off the narcotics and he is pretty good with Tylenol, so long as we stay on too of it.

The doctor was unable to close Luke's soft palate so he still has a home between his mouth and his nasal cavity. We go back in July for another surgery where they will close the soft palate. Then in January of 2015 they will remove the prosthesis and close the palate. So 3 surgeries in one year. Not ideal but it needs to happen. We think he will then have further surgeries when he is 4 (nose),  7 (alveolar bone graph), and hopefully that is it. Elective rhinoplasty seems to always be an option at 16, if needed.

Speech evaluation is this week so we are moving right along!! 

Here are a few pics from this weekend..it's pretty rough going!! Hopefully this week we get to see more if his new smile!!

4 days post surgery - beuising gets worse before better 

                       In hospital

Surgery day!

Luke did great today! He had a rough start - up at 4 am local time and no food until after surgery. I did get him some chill drugs as soon as we checked in and things went well after that.  The surgery lasted about 3.5 hours in total and I got updates throughout.

He is eating and drinking (stir fry and a smoothie) and on a good pain mgt regiment. 

Thank you all for the prayers. / offers of help, etc. when you have 4 kids in 5 years, ppl either step up or step out of your life. I cherish everyone of you that has stepped up. If you are reading this you are a step up friend. And we want you to know that we appreciate all of you that are supporting and just loving Luke and our family!!

Before surgery

Directly after surgery

This evening -  he got the munchies, great sign!!

Utah - day 1 and 2!! (Surgery tomorrow)

We are in Utah, flight was good, albeit long with an almost 2 year old on my lap. 

At Detroit airport

On my lap - he's a big lap baby!

Little guy worked his way to the ground and took a nap on the floor of the airplane!

My sweet friend Amanda picked me up at the airport and drove us to our appointments yesterday. We then had dinner with her family. So blessed by this crew!

We are seeing an insane number of doctors...here is the line up..

ENT - suggested ear tubes. He also showed me that I can visually see my sons nasal cavity if he opens his mouth wide enough. I also got to see how lunch is regularly left in his nasal cavity due to the cleft palate.

Plastic surgeon - suggested we close Luke's lip, fix his nose a little, and close his soft palate. He said Luke will only need the prosthesis (fake plastic roof of his mouth) for 12m. The hope is that his natural bone grows behind the prosthesis over the next year.

Orthodontist - fit Luke for the prosthesis 

Speech therapist - told us to get started ASAP when we are home with speech using both medical insurance and our school system.

pediatric dentist - looked at one if his teeth that may need a filing.

Neurosurgery - consult for genetic markers given the cleft birth defect

We are on for surgery tomorrow morning at 8 mountain time. I am sad to see his adorable cleft go but happy he will be able to communicate better soon.

Please pray for skillful surgeons and a peaceful recovery!!!

2 years ago - gotcha day {the curtain has been pulled back}

Gotcha day...

Many adoptive parents think this is the best day of their life. They remember the first day they saw their child in this magical way.

Me......not so much.

After meeting the foster families that so loving took care of both of my children, gotcha day for each of them was, in reality, not magical. It was the day my child was ripped away from the only family s/he knew.  The day that my son crapped himself 4 times b/c he was so scared of us. I thought it was an intestinal bug...nope, just a freaked out 2 year old.  It was the day that the only family he knew was ripped away from him.  The day he looked up and saw...us.

It was magical for us b/c we love them now. And we are happy each of them is with us. But lets face facts here people, its not magical for our kids. Today is the 'celebration' of Emma's 2 year gotcha day.  It is impossible for me to celebrate this day and not recognize the loss that occurred on that day that when we gained so much.

I saw the hurt in her foster sister's eyes when she saw and hugged Emma. I saw how much she missed Emma and how loosing Emma had an impact on her.  It was kind of like seeing 'oz behind the curtain'.
Its awesome to know the truth of her foster family (that they loved her so much) but the fake adoption happy notions of how she came to our family that I once enjoyed are now gone.

I realize Emma coming with our family is what had to happen. She couldn't stay with the foster family in real life.  Too many constraints in the real world for that to happen.  So she is stuck with us - and for that we are grateful.

On this anniversary, I am praying for Emma's foster family and, frankly, her birth family.

• I pray that the foster sister feels peace with her foster family (she is not currently on the list for adoption).  I hope she can find a place in this world that keeps her safe and at peace.
• I pray that their family chicken gets replaced (they had to kill the one they had when they learned we were coming for lunch!).
• I pray that both families knows how grateful we are for what they did.  That they know that we realize we are not a better family then them. We are not....we are likely not at all what they had envisioned for the perfect US parents adopting their child.  We were just born in a country with more resources. 

Happy 2 yr anniversary with our family Emma.  We are ETERNALLY grateful for you in our family. You are a tiny, spunky, little sassy girl.  And we love you.

http://youtu.be/5cGS-DvAJy0

Re-Entry {Cleft Palate 101}

So...we have been home for about 1.5 weeks and things are starting to calm down. Jet lag is behind us THANK GOD.  My little sister stayed with us for the first 5 days which were plain awful and we owe her and her hubby a world of gratitude. We are absolutely trying to get into a groove and attempting to figure this 4 kid thing out. It is coming along!

Concurrently, I have been trying to determine Luke's next steps in terms of his cleft. As I briefly mentioned the day we met Luke, his cleft palate was significantly bigger then his referral indicated. His referral indicated his cleft was the soft palate only but when we saw him it was clear he had a hard palate cleft as well. Meaning a few stitches are not going to fix this problem.

So...I have been researching/learning a lot since we came home about cleft lip and palate children.  In terms of care, I have been looking at our local hospital (U of M), Beaumont in Detroit, and a hospital called 'Primary Children's' in Salt Lake City.

U of M is indicating we can see a nurse in January, a plastic guy in February, and we could schedule his 1st lip surgery for 4/1.  We could then schedule his palate surgery would be sometime in the fall. We could start speech therapy before fall but, in reality, it sounds like we have to wait for the palate to be fixed in order to start hard core speech.  Frustrating news of a mama whose child is almost 2 and cannot communicate besides yelling and pointing (we are teaching him signs too).  He has had substandard care his whole life and the best we can do is a palate surgery almost a year after he comes home?  To boot, U of M didn't have a clinic so I had to see all of the doctors separately. That would include a 1) Plastic Surgeon, 2) ENT, 3) Genetics Doctor, 4) Echo/Cardiologist, 5) Otolaryngologist (hearing/speech), 6) Dentist/Ortho.  That is 6 different appointments/visits that I need to make. For a mama of 4, not exactly an easy task.

Beaumont was a little bit better - they at least had a clinic so I could get in there all at once and see the plastic guy, the ENT, geneticist, etc. I have that appt next Wednesday.

Then there Utah.  This team does a specific type of cleft palate repair that, from my knowledge, is only done in Utah and a few places in Europe.  They have a DDS on staff at the hospital (he runs their cleft clinic) who places a prosthesis into the child's cleft palate.  It is basically a fake roof of their mouth.  They leave this prosthesis in the child's mouth for a few years while the child's natural bone  continues to grow.  Meanwhile, the child learns to speak, eat, etc using a 'normalish' mouth.   Then at 4-5 years, they take out the prosthesis and see what is left to repair and the palate is then closed. Lots of pro's to this method including less surgeries down the road. It also gets us into speech now vs when he is almost 3.  Because the palate is not forced shut at such a young age, less orthodontic repair/procedures will be required when he is pre teen/teenage years. At this point, it is looking like enough Pro's to cover the 'con' of traveling to Utah.

Amazingly, Utah had two cancellations/openings that allowed us to book a clinic appointment on Monday 1/13. They said that if we liked the team, they had a cancellation and could fit us in on Wednesday 1/15 for the prosthesis surgery, ENT, and lip repair. In surgery and appt land, this is a huge blessing! They had to line up a ENT, Plastic Surgeon, and a DDS for his surgery. But, it all worked out!

Due to the insane amount of travel I have taken lately, I also had enough points to cover the last minute flight to Utah without purchasing a ticket.  Luke is just under 2 so he can still sit on my lap!

To boot, one of my high school friends now lives in SLC and offered to pick me up from the airport and let us stay at her house. She has 3 kids so knows how crazy this is going to be but still offered. Seriously?!

We are feeling very blessed!!

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A few recent pics...

New Year's Eve

In our backyard/swap area!

Yum, Christmas cookies!

New Year's Eve !!