FABULOUS FOUR

Happy Birthday, to our 4 year old Henry James!

(as of April 24th - better late than never)

Round 1

Friend party with Elizabeth

Henry wanted a Chuck E Cheese Party this year for his birthday, with some slight influence from his big sister.  Megan had gone to one of her friend's parties there, and came home with glowing reviews of the fun to be had. From then on out, listening to his older sister's advice for fun, Henry only wanted a Chuck E Cheese Party.  We told him if he had it there, only one or two friends could come, and he didn't even think twice. It was Elizabeth ("my best friend") and Ms. Megan. 

I was a little leery of the Chuck E Cheese party at first, but in the end it turned out really fun.  Henry had a great time with just Elizabeth, he loved all the games and tokens, and loved getting a rainbow slinky at the end.  It was the easiest party I have ever thrown.

Round 2

Family party with Ms Megan

Ms Megan is Henry's nanny/helper, and we love having her be part of our family.

She brought what every party needs BALLOONS, but not just any  balloons, balloons filled with money.  Henry LOVED it.

We started off the party playing outside. 

 His new t-ball set was a hit.

As the sun was setting we went inside for a birthday dinner, with all of Henry's favorites -- chocolate milk, cheetos, hot dogs, and cake.  Henry has never eaten so well.

Happy Birthday, to my sweet, funny, joking, loving, chocolate milk lover, tv/computer monster, hard working, smart, clever, playful 4 year old Henry James, who has all of Arlington memorized because "my bus goes here" (can it really go everywhere in this city?)

We love you forever and always.

Seven Year Old, Queen Bee

Megan turned 7 years old in March!

We love having Megan in our family, she is a great big sister to her brothers, she is very helpful, she wants to be good and do good,she is always excited for the next thing, and always planning something great.  She loves playing with her friends, she loves riding her bike and scooter, she loves school.

When Megan has a birthday she really knows how to celebrate.  

The Family Party

Here she is on her official birthday March 6th, celebrating with the family.

She requested a black forest cake and dinner at Outback Steak.

Both were very yummy.

Her new scooter.

Seven is such a fun stage in childhood.

Eli loved the scooter.

Even though he is only 15 months, he thinks he needs one too.

The birthday fun continues with the...

The Pajama Party

Megan invited eight little girls over on a Friday night from 6:00-8:00pm for a Pajama Birthday Party.
It was wild and crazy.  The party started out with an impromptu pillow fight, then the girls made glow-in-the-dark beaded bracelets (these worked better in theory -- the beads where way too small, and didn't even glow very well). Next, the girls had to find the glowing bedbug to receive a big surprise (silly string), then they had to complete an obstacle course, which included jumping in their sleeping bag to the popcorn treat (one of Megan's favorite treats).  After a little late night snack, the girls got to go outside and have a silly string fight, which everyone loved.  When the girls came inside, we got into a big circle and made up a funny/scary story in the dark with a flashlight.  This age is more into funny than scary. I was going to get the book from my childhood "Scary Stories to Tell in the Dark", but Megan saw the cover and said she was to scared to read that. Heck, I was to scared to read that book to the kids. We opened presents, sang Happy Birthday and ate donuts (another Megan favorite).  We closed the party with a quiet game called Mrs. Sandman that I sometimes do with the kids to help them fall asleep. It worked like a charm -- those girls where calm as can be after that game.  Last of all a goodbye and everyone sleeping in their own beds.

Sweet Party and Sweet Dreams.

Before the Craziness

Megan ready for FUN!

The kids waiting with anticipation 

What's a pajama party without a pillow fight?

Mr Henry, loved being the only boy at the party.

So Fun!

P.S. Henry's birthday was yesterday, posting soon to come, maybe on Mike's birthday.

Blue Ribbon Science Fair Project

Megan came home a couple of months ago telling us that there was going to be a Science Fair at school and she wanted to do it.  I casually said "great", not making it to big a deal.  Hoping she would forget about it, because I knew what it really meant for her to be a part of the Science Fair, Mike and I would be a part of the Science Fair, and I wasn't quite as committed to the Science Fair. But over the next month she keep bringing up the Science Fair, and what projects she could do, and how great it was going to be, and how she wanted to win (a true Frost). As timing would have it, this is when she started watching  "Jimmy Newtron, Boy Genius" on Netflix, science was on the brain.   So we did it.  Megan  entered her very first Science Fair. 

I like to call it:

Frost Family Science 101

 We (I mean Megan), choose the science of Popcorn.  

The Research 

(It was really cute, she wore her googles the whole time she worked on the project)

The Hypothesis 

(Megan really worked hard on her project and she was so excited the whole time)

The Testing

(Her favorite part)

The double blind study 

(Isn't he the cutest taste tester.)

The Findings

The Scientists.

(Mike and Megan make a great team) 

  Drum Roll, please...........

 The Barrett Elementary Science Fair

 Blue Ribbon Winner

 Megan's project really was awesome.  It was a project the whole family was proud of.

.....and family.

P.S. We found out later that everyone got a blue ribbon for participating.  I mean what kind of science fair is that. Where is the competition, the rivalry, the honor, the prize?  Well I guess now days everyone is a winner.

But I really do think Megan's/family project would have WON!

Bring on the next elementary project this Mom and Dad are ready. 

Our Little Mutants

Mike and I make the cutest little mutants.  And being a mutant in our house is seen as a good thing -- all the X-Men and Spiderman are mutants and look how cool they are.

We've dated since high school, and who would ever have known that all that time, Mike had a misspelling on gene 95 of the RYR1 gene, and I had a misspelling on gene 65 of the RYR1 gene, and when put together we have a significant chance to have (cute) kids with a rare RYR1 muscle disease (uncommon enough that it has no name), with possible risk for malignant hyperthermia (a severe side effect to general anesthesia).  To our siblings: this means that you might have a  misspelling as well, so when you go to have surgery and there is a little box that asks if you or anyone in your family has had a severe reaction to anesthesia or malignant hyperthermia, make sure you check that box and highlight it.  

It's all in the genes, at least Mike looks good in his jeans. HA HA.

Think back to your 1010 biology and genetics.  RYR1 myopathy is inherited in an autosomal recessive manner, and therefore with every pregnancy, you draw a two-by-two table: there is a 50% chance that the child will be a carrier (like Mike and I), a 25% chance that the child will be neither a carrier nor affected (like Megan), and a 25% chance that the child will be affected (like Henry and Eli.)  It's the luck of the draw.

And I guess if you have to have a neuromuscular disease, this is one of the better ones.  It doesn't affect life span, it isn't degenerative (which was our biggest fear going through this), and major organs aren't affected.  There is a wide spectrum of severity of what the myopathy looks like.  With this particular disorder jumping, running, and climbing steps will likely always be hard for them to do.

We finally received the diagnoses of recessive RYR1 myopathy in May/July when Henry was 3 years old, and Eli was 6 months.  I didn't blog at the time we got the diagnosis because there was a lot to process, and just waiting to trying to get a diagnosis physically and emotionally took a lot out of us, especially discovering that Eli had it as well. I had feared he could have the same thing Henry did since he was around 4 months, but we had hoped he didn't.

We are so happy with how well Eli is developing. His case seems to not be as severe as Henry's, and he is starting to cruise around furniture, pull to stand, push a walker and use the parallel bars (yes we have a set of parallel bars).  Our house is like a little gym with all the exercise equipment and therapists that we have coming by on a regular basis.  We should set up a class at our house.  And yes, we still have Ms. Karen, Henry's physical therapist in our lives, who worked with him from birth to three, and now works with Eli once a week.  We love her.

Super power of Cuteness