February 27, 2015
by marfmom


The New Orthopedist

After our fall appointment out of state, I decided it’s time for J to have a local orthopedist. There’s no reason to see Big Name Doctor until J is closer to needing surgery. We can do regular x-rays here and send them to our other hospital if necessary for a second opinion. I called our local Marfan clinic this week and magically got an appointment to see their orthopedist two days later (yesterday).

Now, the doctor himself is fine. I have no doubt he knows the spine inside and out, though some of what he said in terms of Marfan-specifics is a little different from what I’ve heard elsewhere. Still, really nice guy who was great with J, and I feel like we’ll get good guidance from him. Plus, it sounds like this hospital is doing or will be doing the Magec rods soon, and I think I’d want to go that route if he needs surgery at a young age (I believe they’re approved for ages 10 and under).

Specialist aside, the other people we met with today were a little more questionable. J’s nurse asked if he’s on losartan for aortic stenosis. Ummm….how about the opposite?! Clearly orthopedists aren’t cardiologists, but if you’re going to specialize in Marfan you ought to know the most basic part of it, right?

The “best” was this conversation that J had with the resident though.

Resident: So J! Are you going to be the next Michael Jordan or Lebron James? Going to be a basketball star?

J: No.

Resident: Why not?

J: My mommy won’t let me.

Way to self-advocate, son! Even at 4, he knows the rules. I was both proud of him, and ticked at the resident. His stupidity rubs in what J can’t do, and he’s already sensitive to that!

“That’s right, I won’t let you and more importantly your cardiologist won’t let you!” I said.

The resident asked if that’s because he has a PDA. No. Again…Marfan = aortic aneurysms.

Like I said: I don’t expect every doctor to know everything about Marfan. But if you’re working in a Marfan clinic, no matter the speciality, you ought to at least know that the most dangerous part of Marfan is aortic aneurysms/aortic dissection.

Luckily, the actual doctor knew enough to ask about his aorta and eyes. We went over J’s xrays and his scoliosis isn’t at the point of needing intervention yet, but we’ll go back this summer to continue to monitor.

I’m proud of J for handling appointments that are scary for him (like this one), and for starting to advocate for himself.

February 23, 2015
by marfmom


The Menininho & J Rate Oscar 2015 Fashion

Menininho (6) is my red carpet-watching buddy. As he gets older, he gives some great commentary, and I thought it would be fun to share some of that with all of you. J (4) also wanted to chime in.

Let’s hit it!

Jennifer Lopez, in Elie Saab

M: It is like, amazing. Her dress is so big. I like the way her hair is on the dress. It’s super sparkly.
J: Awesome! It’s cooler than my shirt.

Zoe Saldana, in Atelier Versace

M: It looks like a normal dress to me.
J: It’s cooler than (J-Lo’s) dress.

Marion Cottilard, in Dior Couture

M: WOW! Her dress looks like a bed cot.
J: It’s embarrassing!

Laura Dern, in Alberta Ferretti

M: It looks like glittery metal. It’s so dark I could compare it to a dark, dark night.
J: Well…it’s better than the statue.

Felicity Jones, in Alexander McQueen

M: Wow, that face looks like my aunt Gabriella! That dress looks like a soft, soft cloud.
J: It’s better than play-doh.
Me: Actually, she does look like my sister from this angle…I also love the skirt here!

Neil Patrick Harris, in Brunello Cucinelli

J: I hate it. Cause I don’t like it.
Me: M couldn’t be bothered to comment on this. I actually don’t mind the suit!

Patricia Arquette, in Rosetta Getty

M: She looks like a super dress fixer. That means she can fix any dress, any time.
Me: This is where J started to get antsy and very particular in which outfits he’d comment on.

Lady Gaga, in Azzedine Alaia

M: Her hair looks like a wig. Her gloves look like cooking gloves. Her dress…looks like…very, very…um, it looks like air. Dark air.
J: It looks like a cloud and a red balloon!

Solange Knowles, in Christian Siriano

M: Yah…I don’t like it. It looks like a shirt. A very. big. shirt.
J: It’s so ugly.

David Oyelowo, in Dolce&Gabbana

M: His suit reminds me of red velvet cake. That’s a good thing. I like the bow tie.

Chrissy Teigen, in Zuhair Murad

M: Her face makeup is ugly but her dress looks amazing. It looks like ice.
J: Blue is my favorite color! I love that dress.
Me: Forget anything else my kids have said. They clearly have no taste.

Eddie Redmayne and Hannah Bagshawe, both in Alexander McQueen

M: They could win 1,002 of those awards. I like her hair and the feathers. I like his bow and his tuxedo, his smile, and his hair.
Me: Why yes honey…many women (and men) love his smile….

Jared Leto, in Givenchy

M: He looks scary. I want to skip him!
J: AAAAHHHHH! I hate his shadow! His outfit is scaring me.

Emma Stone, in Elie Saab

M: I like her hair. The dress reminds me of a yellowish greenish crayon.

Scarlett Jonahsson, in Atelier Versace

M: Her dress looks like a plant. I like her necklace; it looks like a Christmas tree.
J: What is that? [“It’s a necklace.”] It looks like a monster!
Me: “Throat fungus” came to mind for me, but a Christmas tree and a monster work too!

Keira Knightley, in Valentino Couture

M: (gasps loudly) I love it! She looks like a garden! A garden with lots and lots of flowers and butterflies. I like her hair and her makeup. I can’t read the words but I love looking at it all.
J: WHOA. I love the flowers on this dress.

Lupita Nyong’o, in Calvin Klein Collection

M: I don’t like that one, because it looks like a normal dress. It’s boring.
J: I like her dress, because it’s so fashiony.

M: Keira Knightley
J: Jared Leto
Me: Hannah Bagshawe, Felicity Jones, and David Oyelowo

Least Favorite
M: Jared Leto
J: Marion Cottilard
Me: Chrissy Tiegen

February 5, 2015
by marfmom


Our Adoption Story: The Match

I know it’s been awhile since I’ve updated here. Thanks for sticking with me! We’ve had a busy few months adoption-wise, which I’ll explain below.

In early fall we learned about referral agencies. These are companies that work with adoption agencies (they do NOT work directly with expectant parents). Adoption agencies send the referral agency situations that they want more adoptive couples’ profiles for, and the referral agency in turn shares these situations with their clients. If a client is picked, that hopeful adoptive couple then works with that adoption agency.

So, after a lot of consideration, in October we signed with a referral agency. [side note: many people don’t realize it, but you can work with multiple organizations at once, whether those are agencies, referral agencies, lawyers, facilitators, nonprofits, or a combination thereof.] Within days we were asked to send our profile to an agency, and were selected by the expectant mother who was due in January. It was amazing! My mother happened to be in town, so we were able to share the news with her in person. We spoke with the expectant mother. We told the boys. We (ok, *I*) shopped. And shopped some more.

Baby girls are awfully fun to shop for!

We were up front with the boys that there was no guarantee they’d be getting a sister in January, but we felt that with all the time to prepare we couldn’t hide the news from them, either. They took to calling her their “maybe baby.” The four of us bounced names off each other. J oohed and ahhed over clothes in the store, asking at least twice per visit to Target “can I buy THIS for my maybe baby sister?” The items in question were usually size 5T and character-themed.

Menininho helped me decide on the nursery bedding (purple and green). I forced Mark to sand down our old changing table/dresser so that I could paint the whole thing black to match the crib, because I’d always wished that we had a nursery with matching furniture so by gosh this baby girl would have that! I painted the blue stripe on the wall lavender, and found a shade of green to paint the photo frames to match the green in the bedding.

The diaper bag was packed 6 weeks in advance (you never know!), save for a few last minute additions the week she was due when I realized baby didn’t have enough pants. Oh and then again on her due date, when I couldn’t pass up a kitten hat and some mittens, because heaven knows I have no idea what happened to the mittens of 4 years ago.

But, things don’t always work out the way we hope and plan. Last week with suitcases packed, we got the news that the mother had decided to parent.

Adoption grief is a funny thing. I mean, once you’re matched you have to plan as though this child is yours. You get supplies, you think of a name (though I refused to settle on one, because if the match failed I figured the baby would be a little less real without a name)…maybe you tell some friends and family, or maybe not. But at the same time, you’re acutely aware that this child isn’t yours and may well not be. When an adoption match falls through, you’re grieving something that was never yours in the first place.

We’re taking it a bit at a time. The boys are doing ok. For me, it comes in waves. But, we’re not giving up. We’ve asked for our profile to start being shown again. If you know someone making an adoption plan, please think of us. Hopefully we’ll have a new little one to introduce to all of you soon.