Monday, April 21, 2014

Ferriscan...Redux

Well, this is where the rubber meets the road.  Emmie's first Ferriscan was scary because, well, I find general anesthesia to be scary and having your child "go under" is a million times scary.  But we sort of knew that the results would be less than stellar because she hadn't started chelation yet.  And, as promised, the results were in fact less than stellar.  (For you Ferriscan experts out there, her cardiac T2* was 21 and her Ferriscan liver iron was 25.  For you non-experts, that's pretty low for cardiac T2*, and way too high for liver iron.)

This year was scary times 10.  I was still terrified about the general anesthesia even though I knew better what to expect, but we were also really anxious about the results.  At the time of her 2nd Ferriscan, Emmie had been on Exjade for just about 12 months.  As you might have read here, we fought about it, cried about it, gagged over it, and struggled a LOT to find a way that was palatable for her to take the medicine.  In the end, Emmie took every dose of Exjade in yogurt or drinkable yogurt.  As I stated in my post about Exjade, I felt pretty good about this as it was recommended by our hematologist (one of the leaders in the field) and because there is one study and lots of anecdotal evidence to suggest that Exjade works in food despite the fact that it is not on the label.  However, now and again I have heard other parents saying that their doc doesn't recommend using Exjade in food, or that Exjade doesn't work well in dairy products, and so on.  Still, my stance has been that having Emmie take the Exjade in food seems preferable to her not taking it at all.  And, if it's not working, there's always Desferal....

So, the Ferriscan.  Overall, our experience was better.  The hospital allowed us to do pre-op for both girls on the same day, which was helpful.  Our experience in pre-op was NOTHING like our experience last year.  Last year there were literally patients everywhere, even flowing out into the hallways waiting to be seen. This year we were the only patients there, and we were in and out in an hour.  It would have been less if I didn't make a habit of asking the same questions over and over.

We got the call the day before the scan that Emmie would be one of the first scans of the day, arriving at 7:15 am.  We were so relieved to hear this, as it's less time for her to be fasting, and it's less time for me to be hysterical waiting.  We were taken back pretty quickly into what I'd like to call the "Scary Anesthesia Room."  This time, I wasn't the only one who was scared.  (You might remember last year Emmie was mesmerized by the TV, not noticing anything else in the room.)  Emmie's eyes were as big as pie plates as she watched the nurse fill syringe after syringe, laying them all out on the table in full view.  It seemed everywhere she looked there were more syringes or tubes or face masks or you name it.  It was so obvious to me how being just one year older made it so much scarier for her.  She knew something "bad" was coming, and there was NO distracting her.  Well, except for the Versed.  So we very quickly had the Versed/mask discussion with the anesthesiology team and we all agreed that since everything went well last time that we'd just repeat that.  (Of course we got the disclaimer that from one time to the next children can have different reactions to the same drugs, so we weren't totally in the clear.)  This time I let the nurse give Emmie the gross-tasting Versed in the syringe and she cried and gagged a bit, but then it was almost as if the drug started to take effect immediately.  I'd say in 5 minutes she seemed six sheets to the wind, slurring her speech, cuddling me, and calmer.  We laid her on the bed and put Curious George on and she kept asking if the people were "real" or in the TV.  At 8:20 it was time for us to leave the room, and even though Emmie was pretty well drugged, she cried such a sad cry that really broke my heart because last year she did not cry when I left.  We took comfort in knowing that the Versed not only relaxes you, but it also gives you amnesia, so she has no memory of us leaving her.  I could see through a crack in the window as we left that the nurse had the mask on her face and that she seemed peaceful.

As promised, we got a call at 9:15 saying that everything was going well and that she had about 20 minutes left.  They told me that she was given "laughing gas" at the beginning, and then had an IV inserted in her right hand, and then she received the general anesthetic.  They said she was comfortable and doing great, and that they were getting great pictures.

At 9:40 we were called back to recovery.  Emmie was extubated in the procedure room and woke up enough to breathe on her own, and then went back to sleep, likely from the remaining effects of the Versed in her system.  She seemed peaceful and after about 15 minutes she woke up normally and gracefully.  She was happy to see us, and right away asked me to get in bed with her so she could lay on me.  Her voice was a bit scratchy.  She asked for a popsicle and was looking for her Leappad to watch Caillou, both signs that she was feeling pretty good.  Three popsicles later she was doing great and given permission to leave.  That was probably before 10:30.  Emmie was chatty, hungry, and very clingy on the ride home.  She wanted me to somehow navigate the curves of Storrow Drive while reaching into the back seat to hold her hand.  Which, I was happy to do.

After that it was a pretty normal day.  She had a great lunch at Nana and Grampy's, played, and took a nap.  She woke up asking for spaghetti, so I made a tuna pasta puttanesca-style that she ate two huge bowls of.

 The only thing she really gave me any flack about all day was taking her Exjade before dinner.  How yucky it tastes, how the stuff at the bottom of the glass is gross, how she needed an M&M to get it down.  And, as we fought about it, I had this sinking feeling in my stomach.  What if, after all of this Exjade stuff for a whole year, she's one of the 30% of patients who are non-responders to the drug?  What if those moms were right and Exjade doesn't work well with dairy products?  What if we haven't been crushing it enough?  What if the sprinkles and Dora yogurt and daily Exjade Happy Dance and now splitting the dose so we do it all TWICE a day...was all for nothing.

But it wasn't.

The NP called the next morning with literally some of the best news I've ever heard.  Emmie's liver Ferriscan was down to 5 and her cardiac T2* was up to 35!  I cried and cried and nearly dropped the phone as I asked her to repeat those numbers again and again while I waited for the report to show up in my inbox.  Yes, Emmie's ferritin had started to come down slowly, particularly in the last two months.  But I never, ever thought that we would see results like this--actually, some of the BEST results I have EVER heard of.  With her latest ferritin still at 2200, even KNOWING what I know about the lack of correlation between ferritin and total body iron, I never expected her to have a liver iron in the normal range.  And when the NP said to me, "Do you remember the Exjade non-responder study we worked on?  Well, I would classify Emmie as a responder."  To which I replied, "Yeah, you freakin' think?!?!?"  Very scientific of me.

So, she did it.  Well, being honest here...we all did it.  While the bulk of the burden was on Emmie to take the Exjade, I'd be lying if I didn't say that it was a team effort.  So we hugged her tighter than ever and went to The Cheesecake Factory to celebrate.  And when we asked her why we were having a family celebration, she said, "Because I did a good job with my medicine, and because my belly pictures were great!  And I don't even remember them putting the IV in!"  Spoken from a real trooper, a great role model, and our inspiration.

Relaxing while the Versed was taking effect.  Emmie, not Mama.
I was totally hysterical and could have used some myself.

This is just a few minutes after she woke up!  Lookin' great!

I was feeling SO SO SO relieved when this picture was taken.

Nothing like having my baby back in my arms.

Exactly one week later, we'll be back, doing it all over again for Rosie...



Monday, March 24, 2014

Maine Maple Weekend

Being a huge Maine lover and a huge maple lover, I have always wanted to participate in Maine Maple Weekend.  For whatever reason, we've never made it happen until this year.  What a super time!

I did a lot of research (typical for me, I OVER-research everything) before we went, looking for the perfect farm to visit.  My goal was to balance visiting an authentic sugar shack with finding some fun things to keep the girls happy.  Chase Farms was the perfect place for our family to visit!

Chase Farms is an easy ride from the Boston area, and near everything we love on Maine's beautiful southern coast.  The farm stand itself and sugar shack are pristine and very visually pleasing.  I felt good about eating food from their operation.

Given the super cold winter, we were very excited to see that they were boiling sap for maple syrup.  We each had a "shot" of warm maple syrup right from the evaporator.  Well, actually, Emmie ended up with 4 shots of warm maple syrup right from the evaporator.  She LOVES her maple syrup!  We also had samples of maple cream which was delectable, and free servings of freshly popped popcorn.

Warm maple syrup.
The website indicated that there would be hay rides, although we did not see any happening during our visit.  Which was actually fine with us because we felt that there were plenty of other interesting things going on for the girls.  Both girls participated in the free face painting, but the place where we actually spent most of our time was in the barn.

Being the "city folk" that we are, of course the girls walked into the barn and yelled, "PEEE-YOU!" about 10 times, embarrassingly loud.  In their defense, it didn't exactly melt my mascara, but it was rather stinky.  You get used to it, especially as you see the super cool animals and adorable baby pigs living in the barn.  There were workhorses, cows, and pigs.  I kept saying to Patrick, "Is it me, or are these animals HUGE!?!??!"  They were really quite impressive and kept the girls interested for a very long time.  Of course the baby pigs were the favorite of everyone.  All of the workers were friendly and patient, especially when Emmie was DYING to pet the horse, Bill, but was still a little shy about it.

Their "PEEEE-YOUS" turned to smiles once they saw all of the animals.

Rosie checking out the baby pigs.  She kept saying, "Oink, oink!"


Emmie petting Bill the horse.  She said next time she wants to ride him.
We told her it might be better if she started off on a slightly smaller horse...
They look like little ranch hands.

After all of the barn fun we warmed up in the sugar house and had some amazing maple syrup cotton candy.  It was being freshly made and was a HUGE serving.  Turns out, Emmie loves cotton candy.  Rosie, not so much.

We bought some delicious maple goods to remind us of our great visit to this super cool farm and were on our way.  We left smiling and super happy that the sun had come out (it was snowing at the beginning of our visit) and that we visited this great family farm.  All in all, we would highly recommend visiting this farm, whether it be for Maine Maple Weekend or any weekend.  The people were nice, their treats were delicious, and it was a beautifully kept place.






As we headed to Ogunquit, we noticed that Chase Farms actually has a farm stand right on Route 1.  We've probably driven by it about 1,000 times and never stopped...this summer, we definitely will be sure to support this local business.

After our great time "down on the farm" (yes, we love country music), we headed to one of our favorite places on the coast of Maine, Ogunquit and Perkins Cove.  It was so lovely out (ie, 45 degrees...I guess we are true New Englanders) that we were able to get some delicious coffee at one of our favorite spots, Breaking New Grounds Coffee, and sit outside on their adirondack chairs.  The house blend was perfect, and the view of the cold Atlantic waves crashing on the rocky Maine coast was beautiful.

Perkins Cove coffee shop.

Perkins Cove.


Perkins Cove footbridge.

Our final stop on our perfect Maine daytrip was to Bread and Roses Bakery on Maine street in Ogunquit.  We had a huge, warm chocolate chip cookie and a whoopie pie.  While the whoopie pie might not have been quite as fresh as during the busier summer months, the cookie was soft and gooey and sweet.  You can just tell they used great ingredients.  Now, even though I didn't think the whoopie pie was as good as they are in July, that's not to say that we didn't eat every last morsel of it.

We sat outside and enjoyed the last of the "warm" weather for I guess another week, chatting up some locals and eating our treats.  It was a perfect end to a sugary, smelly, happy, and amazingly memorable day with the girls.  Well, isn't every day a sugary, smelly, happy, and amazingly memorable day with the girls?  Yes, I think so.

Saturday, March 1, 2014

Rosie's Adoption Video

Here it is!  Long, long, long overdue.  Ten months of our amazing daughter.  From the first second we saw her sweet face in China until today.  We are so lucky to have these two amazing daughters in our lives!




Wednesday, February 5, 2014

Bringing in the New Year!

We had so much fun with two little dollies to help bring in the Year of the Horse!  We really try our best to make a big deal out of Chinese New Year, treating it almost like Thanksgiving for our family.  During the week leading up to the holiday, we are out and about at the stores every day picking up ingredients for lots of Chinese dishes.  One day when we were on about our 3rd store to pick up fresh veggies, I asked Emmie if we could make one last stop at HMart for some fresh lo mein noodles. "This is RIDICULOUS," she said, using one of her new and favorite expressions to complain about the number of stores we visited.  But when we found her favorite noodles and grabbed a milk tea to go, she was very happy.  We made a trip to Chinatown for some baked goods from some of the very best bakeries in Boston, and we also found a new scroll to hang up reading, "GOOD HEALTH."  Perfect for our family.  We also did lots of arts and crafts to help decorate and celebrate.  It all culminated with a huge dinner with lots of Chinese dishes.  I told P, it was like the Super Bowl for me as a cook!  Lots of fun, family, food, and good times to celebrate the new year!

Here are some pics of the girls in their traditional qipao that we bought on Shamian during Rosie's adoption trip...











Displaying lots of oranges for abundance and good fortune.

Showing the girls how I fold dumplings.

Cutting out dough for Hong Kong style egg tarts.


Just one of our traditional dishes.  We had homemade egg rolls, char siu pork, rice noodles,
lo mein, fried rice, shrimp with snap peas, broccoli with oyster sauce, and chop suey.
Since I was a little busy cooking all of this and the egg tarts, we bought lots of desserts.

With Baba opening her Lai See full of Lindt chocolate coins (yum!) from Nana and Grampy.

The girls made paper lanterns and we tried our hand and traditional Chinese
papercutting for the first time!  The symbol with the hearts is our "fancy" version
of Double Happiness.

We hung lots and lots of traditional Chinese New Year decorations including
lanterns, firecrackers, and decorative scrolls.  The scroll on the door says, "GOOD HEALTH."

Thursday, January 9, 2014

2 Years of Emmie

Today is 2 years since the day Emmie so bravely walked into our lives-what a happy day for us indeed!  I sort of want to stop doing these posts celebrating milestones for the girls because it makes me realize I have so much to say, that I can't possibly say it all in one silly blog post.  Most of all, I want to say thank you to Emmie for letting us love her and for being such an amazing daughter and now big sister.  Emmie is beautiful on the inside and out, and has taught us how to love in a way that we didn't even know was possible.  Being a mother--particularly being a mother to this resilient, emotional, smart, funny little girl--has changed my life in a million different ways.  A million different better ways.  And I can only hope that being our daughter has changed Emmie's life in many ways that are better, too.  Emmie lost something to gain something.  But for us, we gained everything.

Two years ago today...

...and now!




Here's one of our first family pictures...


..and two years later:



Here's Emmie's first "meal" with us.  She wouldn't leave her little perch by the windowsill where she could watch the lights outside...and cower away from us.


And here she is two years later, enjoying a LOT of food and smiles at the Chinese buffet (Emmie's choice!) to celebrate her day.




Monday, December 23, 2013

A Lopsided Tree is the Most Beautiful Tree

Before the girls came into our lives, we totally prided ourselves on our beautifully decorated tree and house for Christmas.  Nearly every ornament on our tree is hand selected from a place that we have visited, is handmade, or is very unique.  We've collected them over the years and I still have fond memories of P and I sitting in our teeny tiny condo, drinking Bailey's, listening to Dean Martin sing carols, and admiring the perfectly decorated tree.

Flash forward to now...our house is a mish-mash of decorations we purchased long ago and all kinds of fun handmade things.  Snowmen with their hats on upside down, Santa Claus with one short leg and one long, gingerbread people with too many fingers.  And then there's our tree.  Our once-perfect tannenbaum has a cluttered, jumbled ring around the bottom.  Branches with six ornaments, some facing the wrong way.  Limbs with ornaments laying on them because the little string loop was too hard to use for tiny, impatient hands.  At first, as I sat there watching it all unfold, I had to stop myself from saying, "Girls...not so many on one branch".  But then as I watched, it got more and more beautiful.  Further and further away from the trees we used to have, but more perfect in every way.

This is the first Christmas in two years when we are not aching for a tiny little girl on the other side of the world.  The season hasn't been perfect for us with Mama recovering from surgery.  Cards are going out late, decorations are going up at the last minute, and every single item on Santa's list will not have a check next to it.  But the most important things are right here, running through our house singing Rudolph and Jingle Bells and hanging up their drawings of blue Christmas trees and pink reindeer.  This is what Christmas is all about, and it's beautiful, in every way.






Wednesday, December 18, 2013

A Good Report

One week post-op and I got a clean pathology report from the thyroglossal duct cyst.  I look like Frankenstein with a crummy, swollen incision across the front of my neck (that people can't RESIST staring at!!!!), but the important thing is that it was totally benign.  (It's rare, but occasionally thyroglossal duct cysts can be carcinoma.)  I'm trying to keep it all in perspective as I continue to try to get movement back in my neck and get used to the ugly scar.  (I'm working on a post with the pics and details for any thyroglossal duct cyst enthusiasts out there.)

Despite my fears, the household  kept moving along during my time on the couch.  There were a few (OK, more than a few) moments that I just had to close my eyes and roll with things, but that's probably a good idea for me to practice, anyways.

A couple of moments made me chuckle:

Patrick:  "Rosie asked me for her usual egg for breakfast but I had no idea how to get them they way you do, so I just lied and told her we didn't have any eggs."  She still ate.

Patrick, after serving the wrong Exjade to the wrong kid:  "Emmie, since you just took a bite of Rosie's Exjade, we'll let Rosie take a bite of your Exjade, and we'll call it even."  It was a miniscule amount, no one OD'd.

Funny moments aside, he kept this crazy house running and took care of me like a pro.

My parents are most certainly in the running for both Parents and Grandparents of the Year after everything they did for us.  Every single day they ran errands, brought food, took the girls so Patrick could work and I could rest.  They chauffeured them everywhere, and even this week continued to chauffeur me around since I had to go out but couldn't drive.  The dance instructor, speech therapist, and neighbors all commented on how lucky we are to have so much help.  Even the staff at the infusion clinic thanked my Dad yesterday for stepping up and helping with the driving and care of the girls while I've been recouperating.  Little did they know that he's NOT a fan of blood/needles/etc. yet he still sat there with me and watched his little "imp" get her new blood.

I'm definitely on the road to recovery now and just so happy this is slowly getting behind me and I'm getting on with normal life.  Still, it's definitely going to take awhile to be 100%.  Given what I had done, I can see why this last part of the recovery can take months.

So, it's been a process, for sure.  Not great timing for anyone.  No one could put any effort into getting ready for the holiday, because everyone was putting their effort into helping me.  But I guess that makes me a very lucky gal.  A great husband and family, that's Christmas present enough.

Rosie delighted to be getting new blood.  Emmie delighted NOT
to be getting new blood, but still getting to play with the ipad.

Keeping it fun.

Man, I've had a few transfusions and they never made me smile
quite THIS much!

This kid loves her eggs.  Even hospital eggs.