You have to be prepared to take a spill. Shaun White

"What would you say to a family considering adopting a child with Thalassemia?"
"Do it!"
There has been some talk lately on on what one needs to consider when adopting a child with thalassemia.  I wanted to sit down and think long and hard about that.
How prepared was I when I saw Belle's picture for the first time and fell head over heels totally and unequivocally in love with her?

What is 'Not At All',Alex?
I did all my searching and learning AFTER we decided to adopt her.  I Facebooked, I Googled, I Yahooed, I even Binged in an effort to educate myself. I called and emailed and texted to reach out to others who knew more than me.  I lead with my heart and let everything else fall into place.  I got lucky.  I live an hour from an awesome Children's hospital and 6 hours from a Thalassemia Center.
For those of you who lead with your head and want to know how to be prepared I wanted to list some things out.

1. Where do you live?  Do you have access to a decent hospital and hemetologist?  Your doctor doesn't need to be a thal expert(it would be nice but unless you live in an urban area it's not likely).  Having a doctor that is willing to do a little research and learn from those that are experts is awesome.(We have THE. BEST. PHYSICIAN'S ASSISTANT. EVER! He read the Standards of Care while on vacation. ) 

2. How willing are you to travel?  It's a good idea to visit one of the  Thalassemia Centers at least once a year. They are:
Children’s Healthcare of Atlanta
Atlanta, GA 

The Children’s Hospital of Boston
Boston, Massachusetts 

The Children’s Hospital of Los Angeles
Los Angeles, California 

The Children’s Hospital of Oakland
Oakland, California 

The Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania 

Children’s Memorial Hospital
Chicago, Illinois 60614

Weill Medical College of Cornell University
New York, New York 10021

That being said, you don't need to be near a big city .  I have met family's at thalassemia conferences that lived in other parts of the country more rural than where I live and they make it work.

3. How's your insurance?  My girls require blood transfusions every 3 weeks that includes blood tests, plus there in lots of yearly testing that needs to be done, not just blood tests but MRIs, eye exams, hearing test etc.  After so many transfusions there is an unavoidable iron overload that has to be dealt with, that means a daily chelation medication.  Suffice to say it is a very expensive medication.  Insurance comes into play here in a big way.  Some states have a chronic care insurance(Katie Beckett is a wide spread one). A little research would pay off in a big way.  Pennsylvania has an awesome program.

4. How comfortable are you with medical things?  This maybe should have been #1. But if you are considering a special needs adoption I'm assuming you have thought about this.

 Personally, I am pretty comfortable.  Hubby is working thru his aversions.  My girls get stuck ALOT!  Belle has a port, Betty-June does not so there are varying levels of sticks.

And it doesn't pay to be squeamish.  If you are considering adopting, you are planning to be a parent so you know there will be different things you have to deal with along the lines of pottying but how do you feel about blood?  Just let that sink in.  

At Belle's last transfusion she fell asleep(as she sometimes does).  And when she sleeps, she sweats.  This particular time she sweat so much it dislodged the dressing around her port and she deaccessed it in her sleep, all the while the iv machine was pumping.  Pumping. Pumping.  When I noticed it her shirt was soaked.  I called the nurse and picked Belle up.  We took care of it, the nurse was able to reaccess the port, we got Belle changed and it was really no big deal.  After the 'crisis' passed the nurse and I noticed I had blood all over my hands.  I took a diaper wipe and wiped it off, then washed my hands with soap and water.  The nurse commented on how calm I was.  I told her,"We are putting that blood IN my kid, on my hands is no big deal."

5. Can you commit time? My girls go to Children's Hospital for a whole day every 3 weeks.  At least.  There are also other test that happen annually such as  MRIs, EKGs, Echocardiograms, Opthomologist, Audiologist etc.  But at least 1 whole day every 3 weeks. We get there between 9 and 10 the girls get accessed and have blood drawn for type and cross as well as other test.  The blood gets there about 2 hours  later and runs for 3 hours. Some, who live closer to their hospitals, get the blood draw a day or 2 before and the blood is waiting for them when they arrive an transfusion day thus eliminating several hours.
But those transfusion days, at least to me are not so bad.  The girls and I snack, watch movies, play games, color and just have a grand old time.  I don't have to worry about laundry, or cleaning or anything else except them. And on the way back to our small town from the big city we stop at the Asian grocery and load up on frozen dumplings, noodles, mild drink and other goodies.  

6. Are you ready to deal with the variables? Kids coming home from other countries(in my experience China) will have had varying degrees and qualities of medical care. Belle was younger(19 months old) and appeared to have pretty good care.  Betty-June was older(7 years old) and her care was not as good, plus she has a different form of Thal.  Older kids coming home are going to be facing more significant iron overload.  Also some of these older kids have varying levels of PTSD from their experiences.  

7. How do you feel about research? You will be your child's best advocate.  Knowlege is power.

8. Are you prepared  to lose your heart?  Because these kids will steal it.

Our family has found this special need managable.  So much so we added another girl with thalassemia to our family.

     

 This face spoke to us.   Again we followed our heart and let things fall into place.

If you decide to adopt a child with thalassemia there are lots of resources available.  Cooley's Anemia Foundation is a tremendous resource. Eileen is the patient care coordinator that is really helpful finding  a doctor or just getting you good info.

The facebook group to follow my girls Thal Life is Blood Sisters Belle and Betty-June
And if you do decide jump in with both feet and get PA for a thal child there is an awesome facebook group of moms(and dads) ready and willing to help.  Contact me and I will hook you up!

Getting to know you, getting to know all about you. From The King and I.

My daughters are Chinese. But you knew that, didn't you. 

All three were born in China and came to us at different times in their lives. 

Serenity was 11 months old. Belle was 19 month old. They were just babies and as a result are ethnically Chinese but culturally American. 

Betty-June is 7. For 7 years she lived in China. She is both ethnically AND culturally Chinese even though she is an American citizen. 

What does that mean?  It means things are easier for everyone if I keep that in mind and let that be part if OUR lives. It means learning to make congee (http://m.wisegeek.com/what-is-congee.htm) so she can have something familiar for breakfast or lunch. It means finding Pleasant Goat on YouTube for her.  And it means cutting her a lot of slack when she gets out of sorts because everything is so different. 

As time goes on she will become more culturally in line with us and we will become more inline with her. She isn't the only one changing. All the girls are counting in Chinese and English and Chinese words pepper our conversations. Belle likes Chinese dumplings for breakfast and will laugh along to Pleasant Goat.  

All our lives are enriched. It's an exciting time to be on Team Dailey. 

Hello, Is it me you're looking for? Lionel Richie

I have neglected this blog as I have neglected too many other things this month.  But I have a really good excuse, I have been obsessing over getting Betty-June home!  And it looks like that will be happening very soon.
Her birthday was Aug 24th.  My goal had been to be with her for her birthday, but that was just my goal. When it became obvious that wasn't going to happen we arranged with Helen(one of our agency's reps in China) to send her a birthday party. Helen sent us some pictures from the party and a video.  That may have been a mistake.  Birthdays are not a big deal in China and she looked pretty overwhelmed, but that is a way cool candle on that cake.

 She is looking at the photo album we sent her.  In some of the pictures she is studying the picture of Belle and Serenity.  This one

See the doll she is holding?  That was a birthday present from us.

That's the photo album.  I emailed Helen the pictures and she put 

the album together.  Notice who is on the cover?  

I swear I had nothing to do with that.

So I was thinking how pale she looked and how overwhelmed, and I just felt so sad.  Sad for her, sad for me thinking I shouldn't have sent the party if it just was too much for her.  

Then a few days later I got our 'final update' with these pictures

She is happier and smiling and loving on her doll.  I really believe her birthday party was pre-transfusion and these pictures were post transfusion.  So now I am feeling a little better but still wishing she was with us.

And then last week it happened!  We got Travel Approval!  Well, sort of, the agency knew it had been issued and was being mailed.  They needed the TA in their hands before they could secure us an appointment at the US Consulate.  They expected it Friday or Monday. They had requested it be emailed but were told no. 

  We are pushing up against a major Chinese holiday.  The consulate is closed from Oct 1-5, so no appointments those days and Chinese offices are closed Oct 1-8 so nothing can happen then.  I'm told the only days we could get our consulate appointment are Sept 22,25 or 29 because the 23 and 24th are full.

Oh the drama, oh the angst!  I was so worried travel would get pushed back another month, if I didn't get an appointment on one of those days I wouldn't get to meet her until Oct 13.  But our agency person told me to go ahead and contact a travel agent because when it happened it would happen fast.  So I did, talked to a very nice agent discussed routes and he gave me instructions on what to do when I found out my consulate appointment.

So I went to bed Wednesday night with all this on my heart and mind.  While I was sleeping someone in China decided they COULD email the travel approval.  Thank you, whomever you are. 

Our agency was able to secure us a Sept 22 consulate appointment meaning I will meet Betty-June Sept 15 meaning I leave Thursday to fly to China.  Did you hear that THURSDAY!! After months of waiting it is happening this quick.

Stay tuned......

Happy anniversary Serenity

Ten Years.  Ten very short years.  That's how long we have known Serenity.  I'm not sure where the time went.  My sweet girl will be 11 this month.  HELLO!  Not sure how that 11 month old they handed me in China turned into an 11 year old.  

Look how scared she looks.  She was not very happy at all to be handed to us.  She was sick and scared and well, just plain mad to have her world shook up.  She would not eat solid foods for us for a couple of months.  She would only take a bottle.  Her first solid food with us?  Fudgesicle  Behold the power of CHOCOLATE!

On the anniversary of joining our family we try to do something special with her.  This year we took a train ride. We took a trip on the Oil Creek and Titusville Railroad  It was a good time with the whole family minus Dean and Nikki.  

On the banks of Oil Creek

Big Brother and Big Sister

My beautiful daughter.

Happy Anniversary

“How can there be too many children? That is like saying there are toomany flowers.” ― Mother Teresa

When Matt and I got married we wanted 6 children.  We were young and full of hope and vigor.  After being married 3 years our first son was born.  Matt was 24, I turned 23 the day after Mattie was born and our whole lives were ahead of us.  Mattie was a wonderful, easy baby.
Less than 2 years after Mattie was born along came Dean AND Donovan.  Identical twin boys born when Mattie was 22 months old gave us 3 boys in less than two years.  Life was hectic to say the least.

I'm not gonna lie.  We had fun.  I loved being the mom of boys.  They earned the nickname
'The Boybarians'. The idea of six kids seemed less than ideal while they were little.  It was fun but hard.

Fast forward to the boys getting a little older and we think maybe we could handle one more.  God's plan for our family was to add a daughter born in China.
 
Serenity was 11 months old when she came to our family.  Matt was 38, I was 37, Mattie was 14, Dean and Donovan were 12, and we thought our family was complete.  3 Boybarians and our Girlzilla.  Maybe our plan is to be a family of 6 instead of having 6 kids.

Life goes on as life does.  There were first dates, first days of school, and drivers licenses, proms, birthday parties and graduations and then this happened.


Dean got married!  We were happy, we were thrilled.  His wife, Nikki, is a great gal and we feel so blessed to have her in our family.  But where did the time go?  When did we stop being a young family?  We weren't ready to start the empty nest.

So last summer we added Belle to our family.  She was 19 months old when we brought her home.  By now dad is 47, mom is 46, Mattie is 23, Dean and Donovan are 21 and Serenity is 10.  Our claim to fame is having one child in each of the last 4 decades(89,91,91,03,11).

We discovered something about ourselves, we like being parents alot.  More than we thought we did. We liked raising our boys.  Our best times involved our family.  

28 years ago our family plan was to have 6 kids.  Time to finish that plan.  

This fall we will add Betty June to our family.  3 Boys, 3 Girls.  3 bio, 3 from China.  3 adult, 3 still children.  All miracles, all blessings, all ours.