Monday, April 30, 2012

Not so good news

So we were on the way to the Dr. Office today and received a not so great phone call. On a side note the reason we were going to the Dr. turned out good. Macy's ears looked good and her throat. Her 'off balance' like behavior today of constantly falling must just be from her cold. we will wait a day or so and hopefully she'll be better. 

 But anywho, onto the bad news.  Her gene sequencing results came back and they could only find one mutation. The other could not be found. Since FA is an autosomal recessive disorder it means she inherited one mutation from me and one from Adam. In order for us to do IVF with PGD we need to know both mutations so we know which embryos have FA and which are just carriers, etc. So there is a good chance we might not find her other mutation at all, and if that happens then we cannot do IVF. Which in a nutshell means Adam and I can't have any more kids (biologically anyways) and no sibling matched bone marrow donor for Macy. So there goes our hopes of starting this spring, if we even can at all anymore. 

There are people that have been searching for their mutation for years and have not found it. I don't know what we are going to do; but I still feel like we HAVE to make this work for her somehow. We have to find a way, we just have to. 

 Take care, Jenn

Wednesday, April 25, 2012

Disney Vacation 2012!

We just arrived home from our Disney World vacation last weekend, and to say we had fun is a complete understatement!  Macy had a blast and was herself (especially her laugh) entertainment to many people.  She drew her own crowd a couple times.  I wish I could share some of the video but its to large of a file to upload and I'm not all that into youtube so I will do my best with pictures and explanations!

So here it goes...and on a side note: if anyone is ever looking for an awesome sunscreen that is all natural, chemical free, etc.  Loving Naturals Clear body works wonderful.  We bought the lotion for Macy's body and the stick for her face, and even being out in the 80 and 90 degree weather all day everyday, she got a zero amount of color (which was the goal).  

Macy loves Elmo so we bought her a plush one for her to find in her backpack on the plane.  She loved it!!!  (her first plane ride).  She did awesome on the flight.  Luckily it was a direct flight so for the 2.5 hours she sat quietly and played with her toys.

We stayed at Caribbean Beach resort and luckily stayed in Martinique which is not too far from the main building.  Here is the letter that came with our welcome package!

Of course there was a Minnie Mouse balloon for Macy too!  She loves balloons!  And our bag filled with tons of treats and goodies with our name embroidered on the front!

Our first day we went to MGM, or Hollywood Studios (whatever they are calling it these days).  Macy had so much fun running around in the 'Honey I Shrunk the Kids' playground.

She especially enjoyed climbing...this is where she drew her first crowd because she was laughing so loud having a blast.  She is so little running around people think she is just so cute!

Meeting Mickey!

Day 2 was at Epcot!  Here is Macy at the Living with the Seas pavilion.  She liked the aquarium and Nemo and Friends ride.

Meeting Snow White for the first time.  She is Macy's favorite Princess so she was super excited!  She is climbing on her lap in this picture!
 Getting ready to ride the boat ride in Mexico!  Trying on some hats and Sombreros!  
 Stopping for lunch at Sunshine Seasons!  Macy actually ate better on vacation than she does at home!  She did great!
 This was probably her most favorite.  This is the "What if" labs after the Figment ride at the Imagination! pavilion.  When you step on the square it lights up and play music.  Macy had so much fun running around in here with other kids.  Her laugh was so hilarious and loud she drew a pretty big crowd that just went there to watch her.  She is such a ham when she gets in front of groups of people, and her laugh is so contagious.
I told Adam since he is an engineer he needs to put these light up squares in her bed room!  :)
 Giving Minnie a huge hug!!!!

 This is from Spaceship Earth.  They take your picture and put it in a silly video about your future.  Half of Adam's face is cut off.  Funny!

International Flower and Garden festival was nice.  Very nice topiary's and flowers all over.

Day 3 was at Magic Kingdom, and Day 4 half the day was at our resort in the pool area and second half at Magic Kingdom doing what we missed the first day, and we stayed for the night show.
Here is Macy in front the of "new fantasyland" sign.  It opens later this year.

She loved running around and suprisingly loved all the rides in the dark like The Haunted Mansion, peter pan ride, snow white ride, pooh ride, and even The Pirates of the Caribbean ride.  She laughed through them all!
The infamous tea cup ride.  Those rides make me dizzy so I opted out, and took pictures and video!

Playing with her backpack in the room

In line for the haunted mansion ride.  It was the only ride we did twice.  Luckily we didn't wait more than 20 minutes for any ride our whole trip.  Did utilize the fast passes as much as we could which helped.

Getting ready to go to the pool!  I ordered swim material and made the pants and sleeves to make sure she was covered.

Checking out the kiddo playground at the resort

Getting ready to eat!

Adam and Macy hanging out in the kiddie pool

Second half of the day at Magic Kingdom.

It's a small world after all....

Buzz Lightyear space ranger spin.  She was racking up the points

Our picture from the ride

Transit Authority people mover in Tomorrowland

Macy meeting Stitch at the dance party

Mommy and Macy picture

The night show starting

Day 5 was at Animal Kingdom.  This picture is at night at our resort.  It is the first time Macy has played in the sand on the beach.  She was a little wobbly but loved it.

The bone yard in Dinoland at Animal Kingdom

Playing with her little Sleeping Beauty doll on the bus

Triceratops spin

Always bee-lines to stairs if she sees them

Macy's Peapod that she sleeps in when we go places.  It is an awesome travel bed.  Tent-like but comes with a sleeping bag, and an inflatable air mattress that zips in a compartment underneath.  It has windows that rolls up on all 4 sides if needed.  And there is no set pops up on it's own.

And it folds down to this little, flat, circle.  So easy to throw in the luggage.

Getting ready to go home...I made the shirt she is wearing.

On the Disney Magical Express on the way to the airport.  We brought the balloon as far as we could...till we went through security.

Hugging her blanket on the plane on the way home.

So that's it.  A small snapshot of our vacation.  It is a lot of work with an 18 month old, but Adam and I have been to Disney so many times we didn't care if we went on the "big" rides or not.  This trip was all about Macy, and we had a lot of fun!  We had one glitch where I dropped our food and drinks at Pecos Bill at MK, but the staff were really nice about it and replaced everything quickly no questions.  They cleaned up the mess pretty quick too. hehehehe....

Anywho, take care,

Monday, April 9, 2012

Happy Hoppy Easter

Hoppy Easter everyone!  We sure had a nice weekend, and had way too much sugar!  I am surprised Macy is sleeping so well tonight since she had nerds, chocolate, and ate an entire purple peep!  That's definitely not a common practice at our house, but for special occasions why not.  

Here are a couple cute pics!
Getting ready for Easter

Easter egg hunt

Hanging with daddy at Grandma and Grandpa's house

Loving the cozy coupe

Seeing what is in the egg

Loves putting her foot on the table for dinner...just as I did when I was a kid!  :)  so funny how those things get passed down!

Macy loves her tutu!

Taking a break (love her in yellow)

This is a random pic.  But the tree in our front yard blossomed in March this's only this color for a week then turns burgundy

Macy eating ice of the few things she'll feed herself with a spoon

Gotta have a Macy and mommy shot

Farmer Macy
So Macy had one appointment last week.  It was her hearing test and she passed which was a nice relief.  We haven't had any concerns with her hearing but she gets a hearing test annually just to be sure since hearing problems can be a side effect of FA.  Next appointment is not until May.

Macy's favorite things right now are tutu's and bathing suits.  She loves wearing them around the house; she is so silly.  I've been getting into sewing lately and purchased some swim fabric.  I made her a pair of swimming pants, and swim sleeves.  They turned out pretty good for my first "big" project.  We try to keep her as covered as possible in the sun and it is so hard to find long sleeve swim shirts for girls.  They have them for boys everywhere, but only short sleeve for girls so I have the sleeves I made her that we add-on which makes any short sleeve swim shirt a long sleeve one.  And she has the pants in lieu of the bikini style bottoms that come with.  I think we are set for summer now!  I can make an entire bathing suit for her for like $2.00 versus the $40.00 it is to order one online that is the long sleeve and pants.  She does have one of those too; but it won't fit her till next year.  

Not too much of anything else going on which is good.  Adam chopped his hair.  No more Justin Bieber hair-do...hahaha, or Haymitch as the BIL put it the other weekend!  :)

take care,