Lovely Photos

Recently, Natalie took some lovely photos of my sweet kids. I refrained from posting most of them since I was giving some out to the family as Christmas gifts. But, now I can share these truly lovely photos. I really just love how well they capture their unique personalities!

Traditions

Things have been so crazy around here lately, I have been hard pressed to find the time to post. Today, the kids got a lovely surprise package from their Mimi. In it contained silver ornaments that they have received every year just as Bryan and Michelle received them ever year when they were little. I love that these family traditions are able to be passed down to my children.

Blake isn't quite sure what to do with it. Luckily my instincts allowed me to save the ornament before it was used as a baseball.

Yes, if you look closely you will see blue eyeshadow on my child thanks to her wonderfully flamboyant teacher at school!

Last weekend, the kids and I went to the Children's Museum and made a gingerbread house. Mason and I started making them together starting when she was just 5 months old. I have to say, this was so much better; all of the fun and none of the mess to clean up.

Our lovely creation

Mason's First Haircut

Cutting all the blonde off. So sad.

Mason's First Dentist Visit

Mason went to the dentist for the first time this morning, and she was GREAT! She opened wide for her cleaning (she picked bubble gum flavored tooth polish), she even allowed her teeth to be flossed, and then sat perfectly still for her exam. It helps that she loves brushing her teeth, so I told her if she was a good girl she got a special treat of a new toothbrush. The dentist gave her 6 princess toothbrushes to choose from, she was in hog heaven. What a big girl!

Not quite sure what's going to happen

The light was so bright, she had to wear shades

Truly Inspiring

I've shared the blog I follow, Inspiring Hearts, with you all before. But, recently this was posted and it really inspired me and validated in my head the way we have been raising Blake. Many parents of HLHS babies isolate them, become overprotective of them, and treat them like they are different. It has always been important to us that Blake feels as much as he can like a normal kid, and sure I may let him get away with a bit more and baby him a bit more, but I'm just going to chalk that up to being the youngest! ;)
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Brooke
24 years old
Hypoplastic Left Heart Syndrome (HLHS)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven’t had a chance to? I would like to say that kids with CHD are normal. I think a lot of people feel like we needed to be treated differently or feel sympathy for us because of our medical history. What people don’t realize is that what we go through with our hearts may seem unusual or extraordinary to other people is completely normal for us. Parents of CHD kids need to remember this and treat their kids like they didn’t have a medical condition; they should have the same expectations and aspirations for them as their kids without CHD.

Give a short description how you perceive your life or felt about as corresponding with the following three words

Past: Growing up I was always a little different than kids my age; I was always more mature and had a hard time identifying with kids my age. I guess when you go through life-threatening events like heart surgery, even if you were young and don’t really remember it, it changes you; you learn not to take life for granted.

Present: Right now, my husband and I are living in Idaho while I’m finishing my graduate degree in Speech-language pathology. I’m itching to get out of school and start my “real life” but I feel incredibly lucky to be here, even if we’ve had to move far away from family and friends. The challenges have been well worth it.

Future: My husband and I are hoping to start our family in the next couple years. I was very excited to hear from my cardiologist that I could probably carry a child. I am looking forward to having a family and sharing these experiences with my friends and family.

If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be? I would want to tell those children that you are special. Your experiences will shape you your whole life. Never be ashamed for what makes you different. You bring so much hope to people who come after you.

What is or are your greatest accomplishment(s) in life (so far)? I would say my two greatest accomplishments have been getting into graduate school and marrying the love of my life, Matthew.

What has having CHD taught you? Never take life for granted. Don’t sweat the small stuff.

Briefly share your story of growing up with CHD Growing up, my parents were honest with me about my condition and what it meant for my future. My mother taught me that nutrition is extremely important for someone like me. Also, my mom and I were involved in advocacy; talking to parents of babies with CHD and participating in heart walks. I did a commercial for the American Heart Association and was in one of their newsletters. Today, I still talk to parents of children with CHD and it’s amazing to see how much hope it brings to them to see an adult with CHD. I am also doing my master’s thesis on the language development and play skills of kids with a history of early corrective heart surgery (ECHS).

How has having CHD changed your life (other then the obvious health issues)? It has taught me to value every day of my life. I think a lot of people my age are unaware of their own mortality and tend to waste this time in their live or at least take it for granted. I consider CHD to be a great gift. I would not be myself without it.

Obscure, but interesting

This week in history, 25 years ago, a baby born with Blake's heart condition received a heart transplant from a baboon. She died weeks after the transplant, but the encouraging piece of the article below (from 1984) is that it refers to hypoplastic left heart syndrome as a FATAL disease. Aren't we lucky that isn't the case anymore?!
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Stephanie Fae Beauclair, known to the world as "Baby Fae," dies on November 16, 1984, two weeks after an initially successful operation to replace her failing heart with that of a baboon.

Baby Fae was born premature on October 14, in Barstow, California, with a fatal condition known as hypoplastic left heart syndrome. Fae's mother, Teresa, took her home for the few weeks the infant had been given to live, when she learned of the pioneering work of Dr. Leonard Bailey. Bailey had experimented with cross-species transplantation.

On October 26, Bailey successfully transplanted a baboon heart into Fae, an astonishing medical and scientific achievement. The baby was in good health for two weeks, when her organs began to falter. She ultimately dies of kidney failure.

The experimental operation was sensationalized by the media and widely condemned on moral grounds, from the Vatican to People for the Ethical Treatment of Animals (PETA). Fae's mother keeps her burial secret out of fear that a funeral will attract protests from animal rights activists.

Babies Growing Up

Blake has graduated from his high chair, and is now eating at the table in a booster. Mason really likes that he is sitting next to her at the table, and she coaches him on using his spoon instead of his hands while he's eating.

Big boy in his chair!

Over the weekend Natalie took some photos of the kids (mostly for fun, but I'm hoping to get a few Christmas card pics out of the deal), but looking at the couple amazing pics I have seen so far, it just really makes me realize how quickly they are growing up .

That smile just melts my heart!

Besties!

Hallowen Highlights

Here are some pics from our Halloween excursion with the Looneys. For those of you that may be confused, Mason trick or treated as Cinderella, but then wanted to wear all of Travis' costumes. Needless to say, we hit up Target's 50% off costumes today so she could continue her dress up fun at home. Thanks Looneys for a great time!

Razorfish Halloween Party

Great times had by all at the annual Razorfish Halloween Party. Besides the ensuing sugar high (and subsequent crash) that is!

Happy half birthday!

Happy 18 months Monkey!
We love you!

Safe!

As most of you know I have been super concerned about H1N1 (it's a
pretty significant threat to those with heart conditions). And,
because Blake is under 2, he's not eligible to receive the mist.
Today, the kids' pediatrian called and they got their first very
limited shipment of the shot and Blake and Mason are first on the
list. After tomorrow morning they should be safe.

The Pumpkins

Here are my pumpkins with our pumpkin. I think I did a pretty god job considering our usual pumpkin carver is in Brazil.

Good Report

Blake had his regular cardiology checkup today and everything about his heart function looks great! His oxygen saturations were in the lower 80s (normal for someone with his repair is 75-85, but he has consistently been in the upper 80s, low 90s), but that may just be because he has a little cold. We will go back in 3 months to check his saturation and 6 months foe a full visit (our longest interval yet!). And, we are down from three meds a day to two a day (yeah!)

Words, words, words

It occurred to me last night how much Blake's vocab has expanded since he has gotten ear tubes. It's like all of the sudden he wants to talk about everything. I thought I'd share a list of some of the words he's been rambling off lately.
Baby
Ball
Bath
Blake
Book
Bye Bye
Car
Cracker
Daddy
Deer
Diaper
Giraffe
Hi
High Five
Love You
May May
Mimi
Mommy
Monkey
Moon
Nonni
OK
Outside
Paw Paw
Please
Poppi
Thank You

Pics from Texas/OU weekend

Great news for the pooch

Stanley went for follow up blood tests yesterday. All his liver counts
were completely normal which indicates that he most likely ate
something which caused the acute elevation. We also got a mass on his
leg that we've been concerned about aspirated. That turned out to be
non cancerous. Bryan and I said a collective, "Whew," and gave the
pooch a few extra scratches.

Blake - Chase!

Blake is totally into chasing and being chased. It is just so funny what a kick he gets out of it. Here's a little video (sorry it's sideways).

Pumpkins!

Can't decide which pumpkin to pick

That's right, driving a tractor in a Cinderella dress with a spider painted on her face!

Sweet boys (Bryan will kill me for posting this!)

Pretty girl

Fun with tetherball

I had to post these seperately, because I haven't seen Mason have this much fun in a long time. If you can't tell, she's playing tetherball by herself, dressed as Cinderella (of course). The smile on her face is pure joy!

Ch, Ch, Ch, Changes

We've been going through a number of changes in our house the past couple of days.

Blake got his ears checked today, and they look perfect, and his hearing has improved by a full 20 decibels since getting his tubes. Unfortunately he hasn't been really able to enjoy his pain-free ears since he's moved on to getting four teeth.

He also decided this past week would be the one where he started running, and specifically running away from you. He thinks he's pretty funny when he does it too!

And in other news, Mason has gone two nights in a row without wetting her pull up. Although she's been potty trained for a full year, she (just like Bryan) is such a heavy sleeper, she just wouldn't wake up to recognize that she needed to pee. This is a huge milestone for her.

And now for some photos...

My silly Superman

My silly Cinderella

And an even siller Mason Bear

Fun on the slides!