Thursday, January 8, 2015

Who doesn't love a little ear? {Microtia Repair, Part 2}

Over the summer, I wrote about my son's first microtia repair procedure, using the rib graft procedure here.  He recovered wonderfully, with some post-op rib pain.  



My son had the second stage of the surgeries 3 weeks ago.  

He received all sorts of toys both pre-and post-op.  The boy likes Transformers, and he also likes THREE Transformers.  But would you look at this gorgeous handmade blanket? It was donated to Shriners patients by the Berkshire Quilters' Guild. WOW.  Isn't it stunning?

This surgery was thankfully less invasive compared to the rib procedure, and did not require an overnight stay at the hospital.  My son struggled when he came to.  He was in pain where they took the skin graft, and confused as to why it hurt so much on his stomach, where they took the skin from.  The confusion (and even anger) ended after a few hours, and we went home to begin the recovery process.  


He wore this cup until just a few days ago for protection.  


So here we are, 3 weeks post-op.  


The skin is healing.


My boy is back to his goofy self.


He was thrilled to go back to karate and basketball, since sitting around apparently gives 6-year-olds lots of energy.  
I'm totally jealous, since sitting around just makes me tired. 

He has 1 more procedure left this summer, and that should be it.  
My son is not a candidate for atresia repair, but we also have an exciting related update:
his first BAHA has been ordered...and he is over the moon with excitement.


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Monday, December 22, 2014

Dossier Reuse--the update

What to do, what to do?  A few months ago, we were contemplating a dossier reuse, which I posted excitedly about here. We really have gone back and forth on the idea. We have looked at cute faces, considered other needs that we would be open to, and discussed moving forward with our social worker.

In order to move forward with a reuse, we would have to pick a Special Focus child and submit a Letter of Intent prior to the Gotcha/Family Forever date.  Since we adopted 2 last year, the date was the first Gotcha. In our case, that was December 18th.

We have not submitted a Letter of Intent, and as it turns out--we will not be reusing our dossier.

There was a little girl that my husband asked if I could call their agency right away on.  

There were a few little boys that I kept sending pictures of to my husband.  

In the end,  as much as I hate to say it, it keeps coming down to money. Or, in our case, lack thereof.

We are going to focus on paying off our last adoption, and some student loans that just won't go away.

Practical, right?

Meanwhile, we are researching our different options.  Different countries.  Determining what countries we qualify for, and which ones we don't.  We might end up back in China.  Due to some stellar advocates, I see the most adorable kids waiting from China. But, we might not. 

We have a small adoption fund thanks to 2 amazing people. 

China has changed the pre-paid post-placement requirements, meaning that we may get some money back or be able to apply the funds towards our next homestudy. 

So, this next adoption journey is to be continued...


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Friday, December 19, 2014

Caring Santa. He Rocks.

We go see Santa every year. 
But not last year, because I was in China.  
Actually, we didn't go the year before either. 

I don’t even remember why.  

The year before that my little one was a newborn and I don’t think we bothered that year either.  

Come to think of it, I believe that I only have some pictures with the big 2 kids sitting on Santa’s lap.  If I remember correctly, there was always at least 1 child screaming.  As I was searching for a picture this is the only one that I found.  
My gosh, no wonder why we haven't been in a few years. 

MmmmOK that was 4 kids ago.  Probably circa 2007.  We waited in line for hours.  It was probably naptime, and I’m pretty serious about not messing with naptime. I’m also pretty serious about annual traditions with the kids, and I think I’ve clearly been slacking in the taking the kids to see Santa area.

I started researching early this year.  I considered the Frozen experience at the local mall for a hot second, and just about laughed out loud at the thought of my SIX kids waiting line for hours.  We would likely loose a child or two if not strapped down.  I have about 3 runners right now, complicating the whole getting-out-of-the-house thing. 

If we survived, we just might need a drink afterwards.

Nope, not gonna work. 

Through Autism Speaks, I found out about Caring Santa.  We could go to the mall during designated closed hours and see Santa. It was supposed to be an easy going, sensory-friendly environment, with specially trained staff would be able to provide the Santa experience without the triggers that I was dreading:  the lines, the crowds, and a Santa that would be uncomfortable with my children.

I got the kids dressed up.  Shoot, I even threw on a red scarf since I suspected that I might be getting cozy with the big guy—with a couple of kids on my own lap.  We drove to the mall and hoped for the best.  We found Santa…and an absolutely wonderful group of people representing the local chapter of Autism Speaks. There was no line.  There were no tears.  My 3 year old asked Santa endless questions, about his sleigh, his pillow, Rudolf, gifts, etc. The other children took turns chatting with Santa as well. My 6 year old is expecting a banjo. The 2 youngest were quiet and reserved, but there were no tears. It was so much better than I could have hoped for. We took our own pictures, and obviously you-get-what-you-get with 6 kids. It’s cool.  
Thank you, Caring Santa and Autism Speaks.
You both really hooked up our crazy family this year.
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Tuesday, December 9, 2014

Boots, Bars, and a Fancy AFO

Now that Tao is not rocking a cast, we can paint those cute little tootsies!

I have learned so much since the complex clubfoot diagnosis. We anticipated an amputation based on a not-so-favored international doctor's consultation. We were open to any treatment, but I must say that treating a complex clubfoot is hard on a family. It is time consuming, especially for a family with 2 working parents. There are so few professionals in the US that are considered experts in this area.  TWO, to be exact. At this point we are trying to continue with regional professionals. 

The ultimate goal is for Tao to lead a pain-free life with no limitations. 

Meanwhile, meet the Mitchell boots and bars. Post-casting, this is the typical treatment.  Usually, babies are in bnb for up to 23 hours daily.  Due to Tao's age, she only wears these at night while she sleeps. 

I'll be honest.  They are tough to put on.  Tao screams when she sees them and I still struggle to get her heel properly in as far as it needs to be.  

Her boots are currently set at 30 and 70 degrees. Only a few weeks old, they are already sporting a kitty sticker on the heel. 

During the day, Tao wears an Ankle Foot Orthosis, also known as an AFO. 

Of course, they have a pretty design with some girly colors.  For my girly-girl. 

She can finally wear a pair of shoes.  

For a girl that has been ooo-ing and ahhh-ing over her sister's glittery and light-up shoes, this is a huge deal. It took her a week or so to gain some confidence, and some strength.  
But now, she runs freely.  My girl is blossoming, both physically and emotionally.

As long as she has her baby and her blankie, she sleeps soundly. 

I got her her very own pair of squeakers, not for everyday use--but to encourage her to walk.  Now, she dances and prances throughout the house. 
I continue to be amazed by this little one that is so brave. 

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Friday, November 21, 2014

I *heart* Someone Rare


Rare disease:  
defined as a a disorder or disease that impacts fewer than 200,000 Americans at any given time (figure from Rare Disease Day) 

Rare Disease Day is just over 3 months away from today~February 28, 2015.

I will be wearing jeans this year to bring awareness to the importance of research and awareness about rare diseases.  

After meeting with our family geneticist, I discovered that someone that I love and cherish is quite rare.  So rare, in fact, that I cannot find any information online about his specific chromosome duplication. 

He is ONE of a kind.



He is HAPPY.

He is THRIVING.

He is RUNNING.

He is ENERGETIC.

He is LOVING.

He is GENTLE.

He brings JOY to all.

His LAUGH is contagious.

He is AMAZING.

Please consider wearing jeans on 2/28/15 to honor my son, and other unique little ones.

info-short



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Friday, November 7, 2014

Just because we like pumpkins and candy

We have been busy enjoying all of the Fall Firsts!  This is such a wonderful time of the year and there are so many fun activities to choose from.  October weather this year was perfect to set up events every weekend.

     
We found a local free fall festival that included a bounce house, free pumpkins and painting, free food, face painting, tattoos, etc. 




 We went out to a local park to play and found an excess amount of leaves.  Jumping into a big pile of leaves~making angels in the leaves~covering up big brother with leaves~it was a perfect Friday afternoon!



We got the costumes out a few weeks early this year, and Skully here enjoyed some yummy treats at a little party.


Last year we went to our first Trunk or Treat event.  It was great, so we tried out a local one during the day. It was HUGE!  It was a bit overwhelming for the 2 little walkers as they got trampled by bigger kids.  The little princess needed some space but the dinosaur and the unicorn on my back have fully mastered the art of the Trunk or Treat.  



We usually go on an Unhaunted Hayride but I don't think they were offering it this year.  We ended up going on a trolley ride to a pumpkin patch.  It was wonderful! 








And finally, the littles enjoyed their first Halloween, and the bigs are still at an age that they enjoyed it as well.

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Monday, October 6, 2014

Ahhh, To Be Two


It was only last October that we were obsessing over these cute updated pictures that we received of our 2 littlest. They were no longer tiny babies, and they were growing up halfway around the world without us. We were impatiently waiting for the final steps of the adoption to be completed, and we were waiting for these magical words:  Travel Approval. 


During our wait, we were anticipating how the addition of 2 children would impact our entire family. We were most concerned about our former youngest, our 2 year old.  Her position in the family would be forever changed. She would have to share her room, her toys, her clothes, her entire world with her new siblings.  She became a virtual triplet overnight if you will, and how does one really prepare for that?
As I reflect back to when I had only my first 2 children (I say only because sometimes 2 can feel like 10!), I was really into hosting and attending playdates.  I recall my first trip out of the house alone with 2 children.  I was still wearing my pregnancy clothes.  My son was 3 weeks old and I technically shouldn’t have been driving (per the doctor) but I HAD to make it out of the house.  I was young and still had the energy of a 20-something mom I suppose, even when completely sleep deprived. I went to a playdate with a bunch of moms that ended up becoming lifelong friends.  I got out of the car and wondered how the heck I was going to cross the street with a 3 year old, a newborn baby in a carseat, and a large ceramic dish full of watermelon slices?  Oh, and probably a diaper bag. Another mom swooped in to help, and I learned to juggle. I learned to reevaluate how to get things done, if I got things done.  I learned to accept help gracefully when it was offered.


I shouldn’t have worried so much about how my daughter’s role in the family changed.  She adjusted.  She dances and giggles with her little brother by day and chats and sings with her little sister by night.  She still has a very special role in the family, and she has a way of getting what she wants from her older siblings, her Nana, the neighbors, and even *ahem* her parents.

Perhaps this is what happens with larger families, but the playdates stopped.  My friends stopped having kids as our older kids got…older.   I never found a new group of friends that had children Ellie’s age, and I was busy with life as I juggled sports and activities for the 3 biggest.  Ellie’s interactions with kids her own age was minimal to none until the adoption.  She had Nana to herself all day and a bunch of big kids that catered to her on nights and weekends. 

She’s pretty sure the world revolves entirely around her.

She has declared, with certainty, that she is a princess.

I decided that it’s time to get her involved with some peers that she doesn’t happen to be related to.  As a working mom, my options are completely limited.  I ended up signing her up for a ballet/tap class and a weekly evening playgroup at the library~the only 2 options in town.

She was thrilled to finally be big enough to go to school (playgroup).  She wants to take the school bus.  My little girl is so ready to be big. However, she is one of the youngest kids in the playgroup, and struggles with some of the rules.  

She can only go under the parachute when it’s her turn?!

She has to raise her hand to talk?!
Isn't it puzzle time instead?!

She can’t hold the newborn baby that attends with his big sister?!

 Actually, she is having a fantastic time at playgroup.  The group ends past her bedtime, so I’m pretty impressed that she’s able to hold it together that late at night.  She is usually the last child there, fully entertained by her art project and anything that catches her eye as she walks through the children’s room.  She is raising her hand.  She is telling the class about Moosy-Goosy, her dog.  She is singing, dancing, and jumps up and down weekly when it’s time to head to the library.  She makes the other moms smile with her cute little voice and her hand-picked fancy outfits. She is still pretty obsessed with the baby, and every few minutes stops everything to just go and beam at the baby until he smiles. Thankfully, his mom doesn’t seem to mind. She has decided that this cute little baby needs to come home with us, or we need a baby of our own…a big family is completely normal for her I suppose.  Meanwhile, she can stare at this cutie pie as much as she wants during playgroup. I guess we all need a baby fix sometimes. 
Dance class started the same week as her playgroup.  She was thrilled about the idea of dance class until she got there and a gaggle of 2 year olds were screaming, completely terrified to be a room away from their mamas. She came out of the room at the end with her lollipop and said, “Mommy I do not want to go back to dance!” I paid for the first month, so we tried again the following week.  The initial screams were not as intense, but again, at least half of the girls screamed in terror as their mamas left the room.  I honestly give the teacher so much credit!  We just had show week, and my little one got to show off her skills. 

Should I worry so much about socialization?  Probably not. 

She's a pretty awesome little lady. 

Dance away, my sweet one. 
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