Tuesday, July 22, 2014

Who doesn't love a little ear? {Microtia Repair}


Right before surgery
I'll be honest--I kind of like his little ear. But...Christian has come to me a number of times asking if I can get him a new ear and a new hand.  He feels like is being teased by his peers. As a Mama Bear I wanted to head over to school and deal with this.  But the fact is that he will have to encounter with this for the rest of his life, and he will have to find strategies and support so that he is as sure of himself as possible.

We got him fitted for a hand and will pick up that baby next month. Easy peasy.

Getting casted for his.hand
But the ear?  Well, that is a bit more tricky.

There are very few surgeons in the United States that are considered experts in this field--under 10.  There are none that are local.  One local doctor said that he practiced the procedure in South America years ago, but he would not recommend that he perform the procedure.  I most certainly appreciate his honesty as one must be an artist at some level to create a new ear.  His friend in New York can do the rib graft procedure, but he does not take insurance and we will have to pay out of pocket.  Our insurance company MAY consider reimbursing us a portion of what they THINK the procedure should cost.  There are way too many variables with that scenario and I have no interest in dealing with our insurance company when it comes to reimbursement for such a large amount of money.  We consulted with another professional regarding a prosthetic ear, but after the second visit it was clear that he didn't know much more than I do about it.

I am no expert, but based on my research we have 4 options.

Microtia Repair Options Include:

Rib Graft:  A child should be at least 6 to consider this procedure. This will require at least 3 surgical procedures, the first being an incision between rib 6 and 9 to obtain some rib cartilage.  The rib cartilage will be shaped and suctioned to the skull.  The next 2 surgeries include lobule transposition and elevation.  If Christian was a candidate (he is not) a canalplasty would be followed for the atresia repair.

Medpor:  A Medpor can be done for a child as young as 3. With this procedure, a canalplasty can be completed prior to or after the Medpor procedure.  It is basically an implant that is placed on top of the scalp covered by living tissue. It does not require as many procedures and can be made to look almost exactly like the other ear.

Prosthetic:  A prosthetic ear typically involves two procedures in order to implant magnets that will hold the ear in place.  This is typically done for children ages 5 and up, and can be completed from start to finish in under a year.  The type of prosthetic ear that we consulted with a doctor about for Christian involved purchasing a new prosthetic every 2 years for the rest of his life.

Nothing.  A little ear is beautiful, and nothing actually has to be done.

None of these options improve hearing since we are just looking at a microtia repair.  We have yet to venture into the world of hearing aids as we are still trying to figure out if we should or should not. 

For insurance purposes, it is typically considered reconstruction rather than cosmetic, but there are only a small handful of professionals throughout the U.S. that are considered experts. Some offices don't either bother with insurance companies, and it is up to the family to pay out of pocket completely and hopefully be reimbursed a percentage of what the insurance company think the surgery should cost.  Our insurance company wasn't helpful.  The representatives that we spoke to said to look for specialists on their website, but the website does not give an area of specialty that is so specific. All we had was a list of ENTs to consider but none that listed that they actually had experience with such a procedure. 

With so many variables it can be difficult to figure out the right path. It actually took us years of discussion, medical consults, phone conferences, and connecting with our insurance company to figure out what path would work best for us.  For Christian.  

A fabulous resource for families that encounter microtia/atresia is The Ear Community.

In fact, we found a professional right on their website that recently worked on Christian's ear.  We chose the Rib Graft procedure and let me tell you--not even 2 weeks after surgery--his ear looks amazing.  The procedure itself was about 4 hours.  He was in pain for about 2 days, particularly in the rib area.  He stayed 1 night in the hospital and came home with a drain for 1 week and a headband with an ear protector to wear for about 3 weeks.   In about 6 months he will undergo the next procedure, where the ear is elevated and projected out.
1 day after surgery

Pet therapy.  No interest. 
A couple of nights after the procedure Christian wanted to see it.  I was concerned, since it didn't look healed and it is a process that is not yet complete--but he insisted.  He grabbed that mirror and beamed.  He beamed at his reflection in complete satisfaction.  It doesn't get any better than that.
2 days post-op

2 days post-op

6 days post-op


*Please note that again,  I am no expert and these are just my experiences as a parent relating to microtia repair.*



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Friday, June 27, 2014

Because strawberries are worth the effort

Some years strawberry season passes us by before we have the chance to go picking. 
This year we made it.
Twenty minutes and twenty dollars later,  we left with a box full of melt-in-your-mouth berries.

Monday, June 9, 2014

DOSSIER REUSE?!?!?!?!?!

Our 6 month post-placement visit is quickly arriving.  It absolutely amazes me that we have come so far in such a short amount of time.  My children are little sponges and they are soaking in the language, foods, family life, and experiences.  I look back at the travel piece in awe--who in their right mind would travel halfway around the world to meet two little people alone?  So much could have gone wrong, and yet it all went perfectly.  Arriving home was by far the hardest piece of it all.  Jet lag, the lack of sleep, and the amount of work it takes to just get through the day-to-day stuff is enough to push one over the edge.  Add work into the mix and and a couple of kids that need some serious bonding time along with 4 other kids that still need lots of nurturing and are trying to redefine their roles in the family--well let's just say it was a wild ride. And yet...I feel as though we have turned a corner.  Things are far from perfect, but we have our routine down and it is difficult to imagine our family looking any differently.  It feels pretty normal actually--until I take the kids out in public and the stares and comments start--and I realize that our family is hardly normal.  Normal is overrated, anyway.  The other day at The Bronx Zoo we most certainly were on display.  Thank you, beautiful Chinese mommy that was so obviously snapping pictures of me wearing Jacob on my back.  You forgot to turn the sound off on your phone as you took the pictures--and I hope you were just appreciating his smile that lights up his whole face.  It's cool.

My agency typically requires 6 months to begin another adoption post-adoption/birth/big family change. If a family decides to adopt so soon after a recent adoption, they may reuse their dossier.  I know--if you are not an adoptive family you probably have no idea what I am even talking about.  A dossier is a collection of documents required to have notarized,  sealed at the state level, and sent to the Chinese Consulate prior to sending off to China. Documents include employment letters, birth certificates, marriage license, financial status forms, physical forms, non-criminal record, homestudy, and USCIS clearance.  Maybe more?  Shoot I don't even remember.  I completed my dossier over a year ago.  If we reuse, we can save money, time, and a whole-lotta-energy on prepping those documents.

I was thinking we wouldn't bother reusing since we tentatively discussed starting another adoption after taxes are done next spring.  Unexpectedly, my husband said we need to talk.  Well that's never good but I was pleasantly surprised.  He wanted details about how to go about reusing and thought that maybe we should start sooner than later.  As he was talking I quickly opened up the listing of our agency's waiting children.  Isn't it great that the password can be saved right on my phone and I could pull it up in the middle of our conversation?

So for now--a reuse may be on the table. Stay tuned...



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Sunday, May 18, 2014

The Z-Plasty ::WARNING--GRAPHIC POST-OP PICTURES::

What is a Z-Plasty?  

 

A Z-Plasty is when a Z shaped incision is made.  In my daughter's case, this was done on her leg and fingers. 

 

Why in this manner?  

So that the scars will eventually be less visible.

Is this necessary?  Well...yes.  We cannot treat her club foot until it is receiving the blood flow that it needs and she will have increased use of her fingers if they are separated.

Here is the band on her leg.  It is very tight, almost like an elastic band was wrapped around it as tightly as can be.

Why all of the pictures?  I was a little sad/terrified/anxious the night before surgery.  My little baby girl has never been treated surgically prior to this.  As silly as this is, I was feeling down that she would never look just like she did again.

However, this little one was content just jumping on the bed, and sharing a grinder with me.

We arrived at the hotel pretty late...

and we giggled and cuddled until almost midnight.

Goodbye, cute-little-tootsie-as-I-know-it.

Goodbye, happy-little-middle-of-the-night-silly-face.

The surgical team was fantastic. As she went under the music therapist played the guitar and sang sweet songs to her.  I held her in my arms right in the operating room until she was asleep.   I wandered around downtown Boston aimlessly for a couple of hours.  I couldn't just sit and wait.



When she woke up she jumped into my arms...and fell back asleep.  I held her for hours.

When she woke up she was ready to eat and inspect her boo-boos.

Her cuddly new animals kept her calm and content.  Miraculously, she did not need pain medication post-op.  She ate faster than usual. We took a walk and we watched a video with her new friend, another beautiful little patient--also a little lady from China.

The next day the nurse showed me how to dress her surgical spots.  This is about 18 hours post-op.

She was discharged a few hours later and we went home.


We struggled to keep her foot elevated over the weekend.  Julia Mei wanted to be worn so badly that she wrapped herself in my Beco.


We spent 2 full days sitting around.


There was no pain.

The tears only came as I cleaned and re-wrapped her fingers and leg.


And her we are, 3 days post-op.  Do you see the zigzag cuts?  As she grows those will barely be visible.  The blood is flowing nicely into her foot.  She moved her toes.  The color is matching the rest of her body.  Thank you for taking care of my baby, Shriners Hospital. 



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Monday, May 12, 2014

Run Mom Run

While in China, I was going back and forth with a friend.  I considered joining a gym with her. I downloaded their class schedule on my phone and figured out how many I could probably make it to weekly after the kids went to bed.  Really--what was I thinking?  Did I think I'd have all sorts of extra time once I got home? I must have been feeling pretty confident about parenting 6 kids while working full time while I was halfway around the world. 
There will never be enough hours in the day--a single parent or even a parent of 1 child could tell you that.  I will not have enough time to deep clean or finish laundry for at least the next 10 years.
While feeling completely confident that I could do it all, I did end up signing up for a 1/2 marathon.  I had another friend sign me up since I was on the plane back to the United States with two screaming children when signups opened. Once I got home I put off training. It was frigid almost.every.day.even.through.April. I put off training for exactly 3 months, until I could no longer wait for 40 degree weather to actually show up and for me to find the time to actually train. I stopped obsessing about beating my own PR (Personal Record) and focused on just finishing. I trained in a just 4 weeks (*obviously not ideal and please do not do this*).
I was up at 6 a.m. on weekends so that I could be home with the kids by 8 for breakfast. 
I dropped my daughter off at softball a few nights a week and ran until she was done.
After the race, I came home to my fan club of 6. I don't think any of them realize how far 13.1 miles actually is, but they were really excited anyway. We tried to take a picture but...well...you know how that goes. 

Life resumed immediately: grocery shopping,  2 soccer games and a baseball game consumed the rest of my day.

There is no rest for a mom with 6 kids, that's for sure. But sometimes a mom needs to just blast some music and run.

Time to just whip out the double BOB, throw a 3rd child on my back and just take some long walks for now. As long as it's not too hot or cold (or windy), I'll sign up for some more 5k or 10k races too--and maybe another half in the fall. Happy running!
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Saturday, April 19, 2014

Bye bye IEP

It was a Chinese Special Needs adoption.  

We didn't bother to review the file with an international adoption medical expert because we had no intention of saying no either way--and spending up to $500 for the consult just seemed silly.  Google was my friend, although some of the terms listed here didn't translate very well.  

Last month we reviewed his reports for his reevaluation prior to his PPT meeting and we weren't surprised at all.  

This kid does NOT have a special need.  

All of those scary terms from his Chinese file meant nothing.  

When we adopted him we knew it could have gone either way, and we were prepared for anything.  Finding out that other people realize how brilliant he is just happens to be icing on the cake.


Athletic
Helpful
Kind
Loving
Smart
Handsome
Able

Isn't that the kind of son that everybody wants? 







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