Malia's Tongue Flap Surgery(and other stuff!)

 

 

 

It's been rather frigid around here lately, with temperatures dipping down to -43C with the wind chill!  Many of our days are spent cooped up inside, and for the most part we stay sane.  We do tend to watch more TV, drink more hot chocolate, and get more school work done.  So, all things considered, it's not all that bad!

 

The view has been nothing short of spectacular!  Nothing like an extreme cold snap to bring out the beauty of winter!

 

 

Wren has been begging me to put her hair up in a bun, like Tinkerbell.  It's not quite long enough just yet, but hopefully in a few months we can fulfill her wish.  She recently got a bit of a trim and is rocking her new look. She really didn't want a haircut, cause to her it meant cutting all her hair off.  After explaining we were only going to trim it to even it out, she was ok with it.  And she was very happy with the outcome.

 

Malia had her tongue flap surgery on New Year's Eve.  It sucked to bring in the new year in the hospital, but as I chatted with other families waiting as their loved ones were in surgery, and as I looked around...well, I couldn't help but be grateful for a lot of things!  The sweet walls in the PICU are so bright and wonderful!  The medical staff was nothing short of awesome.  But mostly, mostly I was so very grateful that our stay in PICU was short and not due to some major illness.  I honestly don't know how families spend days, even months with a child in the hospital.  So much to be grateful for!

 

Before I share about Malia's surgery, I want to mention that sharing is never easy, nor do I share without a lot of thought and prayer.  Malia is old enough to be self conscious.  Old enough to be embarrassed by what I share.  So, I had a good chat with her...about my blog, who reads it, and what I share.  I asked her permission on what I could share.  And for the most part she was perfectly fine with my sharing almost everything.  Even the disgusting picture of her tongue!  In her words..."why would I care if people see my tongue?  They might get grossed out, but what do I care?!? (insert a little mischievous grin!).  So if you have a weak stomach, be sure to avoid the last photo! She understands that, perhaps in some small way, another child may be encouraged by her story.  And that is really why we share.

 

This was Malia's seventh surgery since coming home and it was by far the most traumatic for her.  She HATES being put to sleep and in true Malia fashion she put up a good fight, yelling and screaming at the top of her lungs! 

 

The surgery went very well, however, it took longer than expected.  As a result, the surgeon and anesthesiologist agreed there was a risk of Malia's airway swelling and closing up if they removed the breathing tube, and re-intubating (not even sure if that's a word!...pardon my non medical jargon! lol!) would be very difficult due to the nature of her surgery. As a result, she was moved directly to the PICU to be closely monitored.  She was kept in a drug induced sleep for the first 24+ hours. 

 

Taking the tube out took 3 dozes of sedatives, and many strong hands.  Malia fought with all her might, even though her hands were restrained, almost hitting the doctor below his belt!  And almost giving a few nurses a black eye!  You really have to admire that kind of tenacity!  Who can do that while being restrained?!?  The nurses and doctor all marveled at her incredible strength.  And mama was once again left with shaky knees! 

 

Malia tried to watch a movie a few times, but promptly zonked out each time!

 

She wanted her teddy tucked in close after the tube came out.  At this point she still had a nose trumpet, and two IV's in her little hands.  A few hours after removing the tube, the nurse attempted to give Malia some Tylenol.  The poor girl once again fought with everything in her.  I soon realized we were dealing with some major trauma and our wonderful nurse volunteered to leave us alone for awhile.  It took a very long time for Malia to let me touch her and hold her. It dawned on me that in my attempt to be by her side, in my attempt to help the medical professionals do what needed to be done...I had lost her trust in me!  My heart still hurts knowing I did this!

 

Finally, she let me rock her.  We rocked for a long time...and then she was finally able to explain why she flipped out at having to take Tylenol...it was white and in a similar syringe as the sedative they used to calm her as they took out the tube!  She was NOT going to let them sedate her again!!

 

The crying, screaming, flailing with both arms and legs happened again as each IV was taken out. 

 

 

In true tenacious Malia fashion...honestly, she does everything with intensity!...she was released from the hospital on Saturday...a full day or two earlier than most children would be released.  Her surgeon was amazed at how quickly she recovered, and how well she was able to eat with little pain.

 

To give you an idea of what a tongue flap actually looks like....

 

Yup!  Poor girl! But somehow, she learned to drink her food and talk!  All with very little complaint or self pity.  She really is a trooper and continues to amaze us with her strength!

 

Tomorrow we head back to the hospital for another surgery.  This surgery will be to release the tongue.  We expect this to be day surgery, but were told to prepare to spent the night.  We should have a better idea tomorrow whether this graft was successful or not.  It looks good to my untrained eye, but if I'm not mistaken I think I do see a bit of a hole remaining.  Here's to hoping and praying that there is more than enough tissue to move on to the next procedure...the bone graft!



What a Month!!

This post is rather...umm...you fill in the word!...I'm tired and it shows!  lol!

 

 

This may go down in history as the busiest and craziest month ever!  We out-did ourselves with appointments this month.  We had 12 medical/dental appointments.  Plus 2 X-Rays and blood work...8 vials for Wren! Thank goodness they didn't fill each vial completely!

 

 

And then there was Christmas!  It was good!  But crazy!  Think of mixing sugar + late nights + appointments + adjusting + Christmas + a full moon....Ahhhhhh!!  Yup!  It was crazy!!!

 

Today was an unusually long day! I may have dozed off at the pharmacists, listening to Tonight's Gonna Be a Good Night!   HA!!!

 

 We knew it would be a long day, but at the last minute some medical related opportunities opened up and we couldn't pass them up.  Two days ago we got a call to have an EEG done for Wren.  We already had 3 dentist appointments, but with the EEG being at 9:30 and the dentist appointments at 12:30...we knew we could make it work.  The plan was for me to take Wren to her appointment, be home by 11:30 and then take the 3 other kids to their appointment.

 

However.....

 

The EEG tech felt it would be best to get Wren to see the Neurologist on call (at the hospital).  I kinda freaked out for just a bit, as I figured it must mean some bad news?  It didn't...only things we already knew were discussed.    The Neurologist ordered an x-ray.  So we did that right away too.  And seeing as Wren's pediatrician had already ordered a different x-ray and some blood work (that had to be done at the hospital)...well, we did that right away too!

 

So we found a sitter for the youngest 2 kids and Martin took the other 3 to their appointment.

 

As for the results of todays appointments....braces will be necessary for yet another kid.  We honestly excel in this area!  Seriously!!  Who has 6 kids that ALL need braces?!?

 

...meds for Wren's seizures.

 

...and now we wait to get the results from the x-rays and bloodwork.

 

So all in all, it was a very productive day.  I'm exhausted, but so at peace and grateful. Throughout the day, little things happened that just made me smile cause I knew the big man upstairs was walking with us, giving us little gifts here and there!

 

Today I was grateful for...

 

* an earlier than expected EEG because the secretary told the EEG tech a bit of Wren's story and in his words..."I just couldn't say no!"

* the friendliest EEG tech ever!  Seriously, I loved him!  It may have had something to do with the look of shock on his face when he found out that I had a 16 year old, cause surely I wasn't old enough for that!  lol!  (Gotta love 20 something kids that don't know what 40 something looks like!)

*a highly recommended Neurologist with the best reviews!

*my SIL willingly looking after our youngest 2...and then sending supper home with them!!

*my Christmas gift...a Starbucks card!

*the nurse that went out of her way to find us some Emla to numb Wren's arm for the bloodwork.

*and....our handicap parking permit!!!

 

 

Now to get a good nights sleep...before the crazy of tomorrow starts!  Malia is having her tongue flap surgery tomorrow.  As you'll recall, she has already had 2 failed FAMM Flap surgeries to repair her fistula.  This surgery has about a 50 % success rate for Malia's case.  It's hard not to be discouraged and I am worried...something I'm usually not. 

 

Anyhow, if you happen to think of Malia, and the rest of us as we try not to worry, would you please pray...for a successful surgery with as little pain as possible, for Malia as she hates the anesthetic, for me as I help put her to sleep, for the surgeon and his team, and for Martin as he spends the day with the other kids, for Wren as there is a very good chance we will be in the hospital overnight and she has never had to go to bed without me around.

 

Thanks so much!  I honestly can't thank you all enough for all your prayers!  It really has been what has carried us through this last month...and the meals we've gotten!  We couldn't have done it without those two things! 

 

Thank-you!!!

 

 

 



Finally an Update!

I've been meaning to post an update for the past few weeks, but each time I have a moment, I'm too tired!

 

We are doing well!  Very well!  So well that I keep wondering when this honeymoon stage will end.  But then I'm not sure it is just the honeymoon stage.  Perhaps, it is our new normal.  God has been so very gracious, and made this entire adoption an out of this world experience and I have a feeling this whole bonding adjusting thing is another one of His out of this world things! 

 

A few days ago I was chatting with a friend and mentioned how we know what to expect...how we feel like we're gulping water in a huge ocean for the first 3 months, how at 6 months we finally feel that we've learned to tread water, and by a year we can see that our new normal is very good and we love it.

 

It was only after our conversation, that it dawned on me that not only are we treading water most of the time, with a few big gulps of unwanted water, but that our new normal feels very normal!

 

I honestly think a huge part of this is the incredible support we have had.  Yes, there are still people who chose to ignore our new arrival.  That has always happened and I have come to the conclusion it always will happen.  The faces change, but the instigator doesn't.  Satan hates adoption and he will do whatever he can to make life miserable for as many people as possible. Understanding that this is a war against darkness and evil puts so many things into perspective.

 

Thanks to all of you that have prayed for us.  There are people around the world that have prayed for Wren and her forever family since she was an infant.  I have never met many of these people, but if you happen to read this...please know we send you a GREAT BIG "THANK YOU!!"

 

There are still people around the world praying for us...in China, USA, and Canada.  There are people in our local church and community that have and continue to uplift us in prayer.  Thank you!

 

And then there are the meals!  Oh, my!  We have been treated like royalty!  So very many people have brought the most delicious meals and baking. And it has been such an amazing relief and an incredible help in our bonding and adjusting process.  Thank you to each and every one of you!

 

Wren is doing well. 

 

What that means is this...she is happy.  She is grieving.  She is testing the boundaries.  She fits into our family perfectly.  Her siblings adore her...at least when they're not dealing with an episode of jealousy. 

 

And in it all, Wren is learning to trust...learning to cuddle, learning to be loved as only a mama, papa and siblings can love.  And we continue to fall more in love with our precious Wren each day!

 

 

 

Wren loves to play dress up with Malia and Raina.  She likes to play with her dolls and Barbies. She loves to colour.  She loves being outside, even in the miserable cold!  She loves bossing Jackson around...and he hates it! 

 

 

 

 

 

 

She loves "skating".  And the other kids love pushing her around.

 

 We've been busy getting ready for Christmas.  We scaled back a lot this year, but still managed to do a bit of Christmas baking and decorated a Gingerbread house.

 

One of the greatest blessings and most spectacular gifts of all, is having Carla and Nate lend us 2 chairs.  The one above, which we use when we head out; and the one below, which we use at home.  It has saved our backs, not to mention a whole lot of other inconveniences!  Thank you for being so gracious and thoughtful!



 

 

I really like how the lighting in this pic makes the basement ceiling look a little less ugly and unfinished!  lol!

 

But mostly what I LOVE is the awe and wonder in Wren's face as she admired that big, beautiful tree!

 

 







 

I had to post pics of this little guy.  He is struggling.  He has lost his position as being the one needing the most help.  And that's hard for him!

 

His sweetness melts my heart!

 

 

 

These three...who knew I would have not one, not two, but three gorgeous girls?!?! 

Be still my heart!!!

 

 

 

 

 

 ;)

 

We Are Home!!!!

 

 

Just a short post to let you all know we made it home safe and sound!  Our flights were as perfect as they could possibly be!  We landed a few minutes late in Vancouver, but had enough time to make it through customs (it's amazing what a child in a wheelchair can do for you!  lol!  Seriously, though, we were escorted to the short line all the way through in Vancouver!  Thank you so much to Canadians for seeing the value of our children!) time for a bathroom break, and a quick stop for coffee/mocha.  We heard the final boarding call as we hurried to our gate and were the last to board.  One of the airline gals commented that we could have had priority boarding, to which we laughed and said it really didn't matter...we were just so very happy to be home and to have made the flight! 

 

Our kids really missed us!  Even Malia cried!  This girl has never admitted to missing us before, and if she has, only a little...unless we insist she has!  lol!  She was crying!  Oh, God is so very good!  Her crying is huge, and we don't take it for granted! And here we were, worried that our absence would set our kids back.  It seems to have done the opposite!

 

Thanks to everyone that came out to welcome us home!

 

Thanks Chantal for coming out to once again document this important day for us!   I can't wait to see more photos!  For now, here's one I stole from Chantal's page.

 

 

 

Earth Has No Sorrow That Heaven Can't Heal

 

This song has been running through my mind the past couple of days.  Especially the one line..."Earth has no sorrow that Heaven can't heal."

 

It runs through my mind as I watch our sweet Wren.  I see her big smile.  It's a smile that comes easily for her, but I see more.  I see glimpses of her past life...the life lived in an orphanage.

 

In all honesty, I really don't know my own daughter just yet.  I know bits and pieces.  Some of what I think I know is based on my experience with adoption.  Some is what I see in her eyes.  What I do know is this...that what I see now is only a small piece of who Wren is.  I know I don't completely understand the grief and fear that I have seen in her eyes.  I know that once I know her well, as a mother aught to know her daughter, only then will I really understand these moments we are experiencing now.  For now, I am comforted by the words in this song.

 

This song runs through my mind as I think of our time in Wenshan....

Here's what I wrote last week while still in Wenshan, but didn't share cause my heart was too raw.

 

 

We arrived back in Kunming on Thursday night.  Friday was an open day, so we headed to Starbucks.  It's expensive, but we both needed a little bit of home, and a place to destress.  I'm not sure if that is even a word, but it's what we needed to do.

 

We sat in Starbucks for a few hours, enjoying our drinks and talking...and crying.  Once the tears came, there was no stopping them.  Trust me I tried, but it was like trying to stop a water main break with a small cap!

 

I cried for YingYing.  I don't know her well enough to say I really know what she was all feeling, but I do know that poor girls heart was breaking!  She deserves to be in a family!  Then again, which child doesn't.  My prayer is that her family will find her, if they haven't already; that their paperwork will be expedited, and that YingYing will soon be home!

 

I cried for all the kids living without a family.  You may think the orphanage we visited was awful, but it wasn't.  It certainly wasn't as warm and welcoming as the one we visited in Haiti a few years ago, but it also isn't among the worst.

 

What broke my heart is knowing that most of these kids will spend the rest of their lives without a family.  I don't know how to process that information.  I don't know what to do with that information. 

 

Sometimes I want to go knocking on doors in Canada, begging those I know to reach out and offer one of these kids a home.  I want to fight the evil that puts kids in these predicaments in the first place.  I want to shout from a mountain top that adoption is beautiful! It is hard, but the beauty of it far outweighs the hard. 

 

If I could have, I would have taken every single one of those kids home with me...and some of you would have gotten a most wonderful gift from China!  :)

 

As always, there are a few kids that stick out and will forever be in my mind.  The boy lying in the corner crib not making a sound.  The "mean" boy who REALLY needs a family that will show him what love is.  The little baby that I whispered to my hubby..."she won't be around for long".  Sweet Miss LuLu...I will be praying that you are deemed "adoptable".  The little girl, sopping wet, who grinned the moment I smiled at her.  The bigger girl who melted into my arms and wanted to be held forever...I'm so sorry I didn't hold you longer, but my little Wren needed me. 

 

 

The tears come and sometimes I wish that my heart could grow new skin..... 

 



 

 

 

Beijing 2015

 

After some confusion in Wenshan with Wren's ticket, and having our wonderful guide Lily rush us through the VIP boarding, hurrying to our gate, and then a delayed flight we finally arrived at our hotel in Beijing around midnight.  It was snowing and cold.

 

 Yesterday was suppose to be a relaxing day as we didn't care to go to the zoo.  Because of the snow and cold, plans changed and we ended up going to the tea house, silk factory, and doing some shopping.  Wren enjoyed the silk factory and the shopping and pointed at all the electronic devices she wanted and all the cute things she wanted.  I'm not much of a shopper, but did manage to barter a few decent deals.

 

We're both tired and more than ready to go home.  This last stretch is always the hardest!  My computer crashed yesterday and it left me longing for some sort of comfort from home.  A few of our kids at home are having a bit of a hard time and I can't wait to hug them all close!  Needless to say, last night we walked to Pizza Hut even though it was cold and miserable.  It felt so good to have a ham and pineapple pizza!

Today was a day to do some laundry, have a nap and relax.  This evening we went to the acrobatic show.  It was good, but not as good as I remember in past years.  Wren wasn't so sure of all the loud noise and ended up sitting on Martin's lap, "hmm" ing  a lot.
 

I'm finding it hard to blog.  My heart just isn't in it.  My heart is having a hard time processing all I have seen. But I know my kids and friends are waiting for updates.  So this post is bland, but hopefully the pics make up for it.

 

Wren is doing amazing!  She has fallen in love with Martin, but is still a bit cautious.  She loves to giggle and grunt and coo to communicate.  She understands a lot of what we say and has little problems communicating her needs and wants.  She has a young and open heart.  A heart that is ready and willing to trust and to love.  For that I am incredibly grateful!

This is our guide Lily.  She was the best guide we have ever had, taking the time to chat with Wren, tell us what she was saying to Wren and what Wren's response was.  She even bought Wren some candy several times!

The tea house...

The silk factory.  This is one of my favorite places to visit in China.

And the snowy streets in Beijing.

 



More of Wenshan

We travelled to Wenshan on Wednesday and returned on to Kunming on Thursday.  This post is rather random, but I want my kids at home to see some of what we saw.

 

 

As I mentioned in my last post, the drive from Kunming to Wenshan was gorgeous!

Wenshan is a busy city, but not as busy as Beijing and has more of a small town feel to it....if that's possible to say about a huge city!

 

This was our breakfast...a traditional Chinese breakfast.  We'd never had this before, so it was new and interesting.

 

 

I simply HAD to take a picture of our hotel in Wenshan!  You gotta love that window!  lol!

 

Thursday morning we headed to the orphanage where Wren spent the better part of her life.  We got to see the room she shared with a few other girls.

 

We saw the playground where the kids played.  I'm not sure if these cars are always out and about for the kids to play with, but Wren loved being pushed around in them.  There was a camera crew there during our visit, so perhaps that's why the cars were there?

 

Wren loved hanging out with Ellie, Mary and Cory's daughter.  She was such a good sport, pushing Wren around in the car and holding her hand as we walked.  You certainly made Wren's day Ellie!

 

We also met Whitney, who visits the orphanage regularly and does therapy with the kids.  Thanks so much for all you do Whitney! 

 

Katie travelled with the Miller family and was generous enough to become our personal tour guide while in Wenshan.  Without her we would have been lost!  She made sure we made it to and from Wenshan, found great places to eat and a place to spend the night. And she spent a good chunk of the bus ride back to Kunming with these 3 squeezed into her seat. Thanks so much Katie!

Our sweet little angel, all tuckered out after our trip!  She really is amazing!  As her Daddy said..."It feels like I've known her for a life time.  As though I knew her before we heard about her". 

 

Yup!  That man of mine really is a gem!  He has the biggest heart and his sweet little girl is slowly learning to see past the goatie that she despises!