Friday, June 21, 2013

A Birthday, Swan Boats, Father's Day and Stuff

So, we've been home about a month now.  I'll be the first to admit that a month is not a long time to get used to living with two crazy people being a mother to two toddlers.  P called today from work to check on us.  The call went like this:
P:  What's up?  How are things?
T:  [Over the din of screaming and dueling Dora microphones.]  How are THINGS?  It's Friday after a week of medical appointments every single day, and the girls got up extra early today, just for fun.  What are you calling for?  So help me God, if this phonecall has anything to do with what's for dinner, I'm going to...
P:  I was really just calling to say hi and see how things are.
T:  OK.  And don't you dare come home late.
Call ended.

Whew.  So, I'm a little stressed at the moment.  Every time I run into one certain person, she always says to me (as if it's the first time she's saying it), "Do your girls nap?  Because if they do, you should REALLY take a nap when they do.  You REALLY should."  Um, OK, thanks.  I guess my miracle powder called "Well Rested" is not living up to it's name.  Whatevaaaaaa...come to my house for a few days and see how fancy you look.

This is a tame breakfast at our house.

The girls had their first dual transfusion this week.  We're still not sure that we'll be able to get them on the same transfusion schedule, but we are surely going to try.  The transfusion itself went well, considering what a long day it is for all of us.  We had a longer shift than the nurses do!  We were really lucky to be offered a visit from some of the Patriots, but it sort of went downhill when E started SCREAMING when they came in to the room and she saw how huge they are.  Apparently, as strapping as her Baba is, she's never seen anyone quite so enormous before, nevermind 6 enormous people.  So, we missed that photo op.  Unfortunately, R had a small allergic transfusion reaction (3 hives) at night, so it looks like we are joining the pre-med ranks.

We had to deal with our first post-placement visit (especially after being in China longer than expected, it really snuck up on us), lots of medical appointments, and several early intervention assessments.  Throw in starting R on Exjade, keeping E on Exjade, and getting my PhD in Sibling Rivalry and we're a little tapped out.

Baba's birthday!  The cake totally sunk because I clearly missed an ingredient
due to the chaos of trying to bake it with the girls.  R threw everything into the batter that she could
get her hands on, including a lobster cracker, a bottle of amoxicillin (unopened) and a bottle of lotion (also unopened).
R was TERRIFIED once we lit the candles.

Boston Public Garden.
Go Bs!

Swan Boats

Caffe Vittoria.

Baba with his girls on Father's Day.  The girls made him a handprint tshirt.
In other words, my house was covered in paint.  I still have some blue in my hair,
but it looks kinda cool.  Hip Mama.

Petey's in Rye, NH for fried seafood for Father's Day.  R is LOVING the clam chowder!
A girl after my own heart!  Well, except that I didn't end up with any clam chowder!

"Where's my fish and chips?!?!!?"

A perfect Father's Day!  A handmade gift, fish and chips, relaxing at the coast,
and ending the day sharing a HUGE sundae with his girls!

Saturday, June 15, 2013

Just Bein' a Family

P's been back to work for two weeks now and it seems I've survived dealing with the gals on my own.  I will admit, come Friday night, put a fork in me because I'm DONE.  As in, counting down the seconds until Baba walks through the door.  Yes, of course, I adore my girls and they are the best, but anyone who spends 24/7 with two toddlers will tell you that they can be a bit--ahem--demanding.  And I'm still new at this...trying to figure out how to go about the day with two little shadows instead of one.

We just celebrated one month since we met R, and we have only just been together in this house longer than we were at the Holiday Inn in Guangzhou.  We would like to think that R is starting to realize that this is her home, not just another stop on her World Tour, but she really has no way of knowing that yet.  Like with E, we're cocooning pretty seriously, and of course there are the people who respect and understand this, and those who don't.  Either way, our agency supports this, as does our social worker, and we definitely believe it works so that's what we're doing.  The cocooning adds it's own layer of stress for me because I can't call in any assistance when I need a hand.  For instance, my China illness keeps dragging on and on and I needed to go the doctor with R in tow because there's no way I would ever leave her with anyone right now.  So there I am, peeing in a cup, with R as my audience probably saying to herself, "This woman gets weirder by the minute."

So in just about every free second we have together as a foursome, we've been trying to have some fun, and build memories as a family--especially for R.  (E already knows we are awesome, ha ha.) Going through these pictures, I realized we've been pretty busy at having a good time!

Memorial Day weekend.

Newburyport.  Baba and his girls.
June 1.  Rye Beach, NH.
After a late day picnic on the beach, we headed into Portsmouth
for ice cream and iced coffees!

Look at those smiles!

While R had a good time on her first trip to the beach, she would NOT
leave the "safe zone" of her towel and step in the sand or the water.

The girls.
June 2.  Castle Island on a CRAZY windy day.  We enjoyed a long walk and
watching the planes at Logan, capped off with some fries and frozen yogurt
from Sullivans.


Showing off her belly?

June 9...
...just over one month as a family of four!

Boston Dragon Boat Festival.

Pigging out on delicious Chinese food on the banks of the Charles River while
watching the Dragon Boat races.  Well, the girls pigged out and left us with crumbs.

Taking a long stroll along the Boston waterfront to end a great day.

Sunday, June 9, 2013

Good Morning

The coolest thing happened this morning.  I was up before the girls, putting my "face" on (as my Nana used to say) while Baba did yard work when I heard a peep from the other end of the hallway.  It was a little like a small cry or a whine, and then I heard, "Mama."  Again, "Maaaaama."  A little wimper, and "Mama?"  I dropped my Bare Minerals and scampered down the hallway and just as I was about to break right out of habit, I realized I had to break left.  Rosie was calling me for the first time!  Up until today, she would just lay there silently until I happened to check in on her.  But this morning, she called for me!  And, when I went into her room and saw her pretty ruffled face, I realized that she was actually happy to see me!  She smiled and laughed and put her arms up in the air and said, "UP!" and jumped into my arms.

I know this must seem tiny and inconsequential, but to me it's a good sign that R feels comfortable enough now to call for me.  Before, I would check on her a zillion times because I just hated the thought of her lying there, not feeling like she could call me, and wondering when someone would come and get her.  I told her how happy I was that she called, "Mama!" so hopefully she'll feel like she can call on me.  Not just in the morning, but any time.

Reading the Sunday paper.

Wednesday, June 5, 2013

R's First US Transfusion

R's first US transfusion is in the books!  And, I'm happy to report that it was MUCH easier than E's first US transfusion!  So far, R has had 3 lab draws and each time it was one stick!  Everyone is reporting that she has GREAT veins, unlike her sister who still needs the IV team to get her line in.  The first time R had her labs done it took 3 of us holding her down while she screamed and kicked and tried to wriggle away.  After that, she's been absolutely stoic (almost too stoic if you ask me) when it's time to get stuck.

As with E, R has fast become one of the favorites at Boston Children's.  When we went in for R's transfusion, we all went as a team, bringing Miss E with us.  Of course everyone was so happy to see her, too.  As she is with her own transfusions, E wanted to "help" with everything for R's transfusion.  Wiping with alcohol, getting out gauze, etc.  One of the cutest things ever was when the nurse said she wanted E to go with her to the blood bank to pick up R's blood.  The nurse said that E told everyone at the blood bank and on the way back that the blood was for her "little sister" and that she's the "big sister."  She came running into R's transfusion room and proudly plopped the bag of blood right down on R's lap.  Something about big sister bringing little sister her blood really touched me, probably in a way that only a mom of a thalassemia patient (or similar) can understand.

The girls just hung out together, colored, watched Winnie the Pooh, and ate copious amounts of snacks to pass the time during the transfusion.  We had a nice meeting with our hematologist and nurse and got the low-down on what we know about R so far.  She was hypertransfused--given a whole unit of blood at each transfusion whether she needed it or not, she has no spleen enlargement (a benefit of being hypertransfused, if there is one), she's got iron overload (a consequence of being hypertransfused), she's got no antibodies to blood at this time, and they confirmed her genotype via DNA sequencing and she is indeed beta thalassemia major.  Which is fine by us!  That's what we asked for, right?  We have lots and lots of follow-up appointments to make, and I requested that we start chelation therapy ASAP.  Can't imagine how fun it's going to be to get two kids to take Exjade...

At the end of the transfusion, the nurse removed R's line, and E donned her latex glove and applied pressure to R's arm to stop the bleeding.  E took the job very, very seriously.  R looked at E as if to say, "Hey!  Who's the nurse here, anyways?"  Another very sweet moment.

So, that's the update on the thalassemia front.  Things are pretty much as good as we could hope for, given the situation.  As much as we love the staff at BCH, our goal is to get the girls on the same transfusion schedule (if possible) so we don't feel like we are there all the time.  Although E may not be able to "assist" as much if she's getting transfused at the same time as her little sister...

Who has this much fun during a transfusion?

Snacking away and watching Winnie the Pooh.

Check out the look R is giving E.  I think she's saying, "Um, are you sure
you know what you are doing??"

Nurse Emmie.  SO cute!

Taking her job very seriously.  We had to tell her that she didn't have to
squeeze QUITE so hard.

Monday, June 3, 2013

Hard Work

The day I married P, I had one gray hair.  It was a strange hair, it never grew longer than an inch.  But it was stark white.  As crazy as he has driven me (ha ha), and as hard as E's adoption was, I never got another one for over 10 years.  Two weeks home with R, and I have 4.  Coincidence?  I think not.

OK, the fun's good!  It really is.  There are lots of fun times, and seeing my adorable daughters laughing together makes me so I happy I feel like I could explode.  Or die.  Or cry.  Either way, it's amazing.

But, this is tough.  Different tough than with E.  E had a horrible time in China.  Everyone and their uncle knows that by now.  But when we got home, things changed.  E cheered up, and we started to act like a typical family pretty quickly.  Her only real struggle was confined to bedtime.  But even then, when she was afraid and upset and grieving, she wanted me near her to help her through it.  E needed me, wanted to be comforted by me, wanted me near.  I could tell that E had a foster mama who loved her very much and took wonderful care of her.   I know E loved her back.  I read so much before adopting E that didn't quite apply. The lack of eye contact, the self-soothing, the disinterest in parents.  That just wasn't E.

R is different.  As we expected, she exhibits many more "orphanage behaviors."  She refuses to look me in the eye.  She doesn't look to us or for us nearly as much as E did.  When she's sad at bedtime or falls and hurts herself, she shoos us away and prefers to suffer alone, or soothe her own boo boo.  She's happy entertaining herself.  She eats and eats and eats and eats long after she must be stuffed.

Don't get me wrong...she's plenty happy and full of laughter a lot of the time, but she's put up a bit of a wall that makes it hard to show her how much we love her and care for her.  Right now, it's mostly just meeting her basic needs.  With E, I felt like I was her mother right away.  Or, more accurately, I could mother her right away.  With R, I feel like I am her mother in that I love her with all of my heart and I'd do anything for her, but I can't mother her.  She won't let me act like her mother yet.  And, I know it's still so soon, but compared to our experience with E, it's just hard.  I don't want to be pushed away when I try to hug her.  I don't want her to wriggle her tiny hand from mine when I try to hold it.  I want her to care that I'm trying to soothe her when she gets her transfusion.  It's OK...that's all what I want and not what she wants right now, and it's all about her.  But that doesn't mean it doesn't feel crummy.

So now, we are working to get R to understand what a family is, what a mother is, what a father is, and what a sister is.  We are showing her that it's nice to be hugged when you fall, coddled when you feel sick, kissed when you go to sleep at night.  These are things that E came to us already knowing.  R is starting from a different place--perhaps a more difficult place--and we will work as hard as we can to show her how wonderful a family's love can be.

Last weekend 5/26 (when it was so cold out).
R's first trip to the North End...she LOVED her hot cocoa at Caffe Vittoria!