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



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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Tuesday, September 30, 2014

Serial Casting is Serious Business {Ponseti Method}


The past 6 weeks have been quite busy.  Tao started serial casting utilizing the Ponseti Method in August.  Clubfoot treatment for a child over the age of 2 is different when compared to a newborn, and it is nearly impossible to keep this particular child still.  

The first casting day rough.  Tao screamed when the cast was applied, even though her foot was not initially manipulated much--so I don't suspect she was in much pain. 

The second week, she screamed as we entered the office. Every.single.30ish.seats in the waiting room were filled.  I sat on the floor and we waited.
We waited a few hours past our appointment time to see the doctor. I had enough treats to keep her from screaming, although she quietly observed every move the doctors made. 

Since the soft casts only come in white (WHAT?!?!), we invested in some permanent markers. Our new weekly ritual:  coloring the cast.

This was also the week that we discovered that she was done with sitting still. It's too fun being TWO to sit still.  

The third week also included a very long wait to see the doctor.  It turns out that this office is unbelievably busy. 

Either way, the whole family got involved with the cast decorating.  

This is the week that she really became a wild little thing.

She didn't want to stay inside while the other kids got to play outside.  

NO SWINGS!  Yeah right.

This cool little lady went right into week 4 with a foot that clearly looked manipulated. 

I think even Tao was impressed with her foot at that point. 

Week 5 came and went, and we scheduled a surgery date for her Achilles tenotomy. Even though her foot was facing forward, a tenotomy would allow her to have some range of motion in the future. By week 6 this pro was part of the team.  She was handing the doctors the soft cast materials one at a time.
She had her tenotomy last week. She came out of surgery in a lot of pain, and pain management was a struggle for a couple of days.  

Tao is back to herself now, and has figured out her own little way to scoot around. She is finally wearing a pretty pink hard cast for 3 weeks, followed by another hard cast for 3 weeks. 

Next up:  bnb and afo time. 

To be continued...



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Tuesday, September 9, 2014

The Dreaded Family Photo

 We tried again.  I think someday the children will thank me for attempting to document that all 8 of us were actually together in a picture.  Right? Hopefully?  Maybe?  

I took the kids to a preschool fair last spring and entered to win a free photo session with I am I Designs and Photography. We won! If I remember correctly I was there with 7 kids.  Alone.  This must have been the only thing that I entered since I had 1 or 2 kids on my hips at any given moment.

 After our Red Thread Session I was a little weary about the idea of gathering up the troops and trying to pretend that this isn't extremely stressful.  I 

 I finally gathered up the courage to contact the photographer Raquel to set up the session. 
She picked the most amazing location--Topsmead State Forest.  
~It's near a winery.  Good to know.~
About the outfits.  It started with the girls.
 I really wanted to order some amazing Matilda Jane outfits for the girls and actually for me.  
 I am obsessed, especially with the big ruffle pants...
but as it turns out way too broke to invest in the amazing world of MJ right now.  
I will have to start saving my pennies and a whole lot of bills. 
 I was stalking online for something Matilda Jane-ish...
and I found the most darling little handmade ruffled rompers for the girls, made by Chloe Belle's Boutique.
If they made these in adult sizes, I think I would wear them every day. 
 I found some chevron bows for the girls and even some chevron shorts for Jakie.
We were good to go.
The photographer brought a phenomenal assistant.
 She paid attention to the little details when I described my children prior to our session...
and she brought some bubbles, 
noisemakers, 
lollipops, 
and of course, a soccer ball.
There were no tears.  Actually, the littles just thought it was playtime. Besides the heat, it was as relaxing as a photo shoot can get.  Thanks Raquel!  You rock!


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