Saturday, August 22, 2015

I'm Published!

My book is finished and available on Amazon. I encourage you to use and choose Cooleys Anemia Foundation will receive a donation from Amazon.
Blood Sisters

Wednesday, March 11, 2015

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!

Friday, January 9, 2015

And I think in your 40s, you land a little bit, physically and mentally, you arrive at a place where you feel you've learned some stuff. Having children at that point meant I had something very useful to do for the next 20 years. Mark Strong

"So are you done?" I get that question every so often. I have 6 kids ON PURPOSE, that surprises/shocks/horrifies some people.  Sorry, I'm not sorry.
When asked my answer is,
 "I've been done 3 times."

We were done after the twins.  3 boys in 2 years=tired, stressed parents.  We were DONE!

We were done after Serenity.  We finally had a daughter, our family was complete.

We were done after Belle.  We were getting older and this would be it for us.

Hello #6.  

Lesson learned. We have learned to never put a period where God puts a comma. Are we planning to expand our family with more children? No.  We have no plans to adopt again. 
 But to take a verse out of context
 "Nevertheless, not my will, but yours, be done.”"

To summerize: Don't ask people if they are done having kids. 
 #1 Its rude.
 #2 It's not a short answer.

Tuesday, December 30, 2014

“What if Christmas, doesn't come from a store. What if Christmas...perhaps...means a little bit more!” ― Dr. Seuss, How theGrinch Stole Christmas!

Oh December, the only winter month that warms my heart.  For the rest of winter I am more grinchy than I probably should be.
But December, oh sweet ,sweet December, How I do love you.....Usually.

This December was a crazy, frantic month for Team Dailey.  Let me give you the quick tour.
Dec 3-5 Philadelphia for semi- annual visit to CHOP and Philadelphia

Dec 9 Betty June had 13 baby teeth taken out, 2 permanent teeth crowned and 2 permanent teeth filled. We had to be at Children's at 6:30 for her 8 AM surgery under general anesthesia but because of hgb issues and low platelet count due to enlarged spleen they wanted standby blood so she went to surgery at 2pm.  We got home at 7.

Dec 10 Surgical consult about Betty June's enlarged spleen.
Dec 12 Matt and I dental checkup (no cavities)
Dec 14 Put up Christmas tree with the whole family

Dec 15 Transfusions in Pittsburgh. Well for Betty June at least.  Belle's hgb was 10.1 so the hemetologis would not transfuse her.  We are in process of changing hemetologists.

Dec 16 Belle and Betty June audiology appts back at Children's
Dec 17 Betty June echo-cardiogram back at Children's.
Dec 18 My grandmother's birthday so the little girls and I went to see her and have cake with my mom and  aunt.

Dec 19 Serenity's play
Dec 20 McFadden Christmas party in town.  The girls sang three songs at the party.  Jingle Bells, Jesus Loves Me and Mama Hao.  That's a pretty big accomplishment for Betty June,(only speaking English for 3 months) and Belle (just 3 years old) and long suffering big sister Serenity.
AND it was Belle's 3rd birthday and my sister's 43rd birthday so after the family Christmas party there was cake and ice cream at our house.

Dec 22 Belle and Betty June pediatrician appt with 2 immunizations each and Betty June got to visit her   school classroom in anticipation of starting after the first of the year! She was suppose to go back the next day for their Christmas party but....
Dec 23 BACK TO CHILDREN'S for the blood transfusion Belle should have got a week ago.  Her hgb was 9.1 and she had had a miserable week. But when we got to the hospital the girls were each given a HUGE gift bag full of gifts.  There was at least 10 Barbies in the two bags. Betty June's had an Elsa dress (from Frozen for those of you hiding from pop culture) Belle's had a 'Frozen" ukelele and small Elsa doll.  There were slippers and puzzles, they each got a baby doll and too many gifts to list.  It was both overwhelming and humbling at the same time.

Dec 24 Christmas Eve at my house for 16.  I was so happy my son and his wife came late in the evening and spent the night to be here Christmas morning. And we were able to get our annual 'Girls only matching jammies' picture.

Dec 25 Christmas Day at my house for 12.  Same son and his wife made Christmas breakfast for us.  It was awesome!

Dec 26 I DID NOT LEAVE MY BEDROOM!!! I am totally serious.  Matt took care of the little girls and I just hung out and watched tv, played FB games and de stressed.  I slept through breakfast but hubby brought me lunch and dinner.  By the next day I felt like I could face the world again,

As a result of our 'busy with life stuff' December I didn't have time to get overwhelmed by Christmas preparation.  I still had too many cookies and fudge for the holiday, and we had our silly games on Christmas Eve with scratch off lotto prizes(that I sent son, Mattie, to buy on Christmas Eve day and he had to go to 3 gas stations to find one that still had Christmas themed lottery tickets) and it's not like anyone suffered from lack of food over the holiday.  Christmas Eve and Day I was actually present in the moment instead of fretting about the next thing to come.  I wouldn't recommend that particular method to enjoy Christmas but it is what happened this year.  

Thursday, October 16, 2014

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 ( 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. 

Monday, September 22, 2014

From me to you.

Dear Chinese Adoptive Parent,
While in China,
I give you permission to:
1. Eat junk food you never would at home. 
Maybe you are vegan/paleo/whole food/lo carb/insert way of eating here. When you are in China it is ok to hide out in your hotel room scarfing down Pringles and twinkies. They call it comfort food for a reason. 
2. Watch tv shows you would never (admit to) watch at home. 
If it is in English and makes you less stressed go for it. Eating cup 'o noodles for lunch while watching Korean soap operas with English subtitles is ok. 
3. Overpay for souvenirs. 
Sometimes you can bargain, sometimes not. I personally am not very good at bargaining. I try, get a little discount and both the merchant and myself feel like we won. Plus how often will we be in China? I need that ( insert tacky item here). 
4. Think China is wonderful/weird. Probably at the same time. 
They call it foreign for a reason. Just remember they are older and bigger than us. 
5. Overpay for convenience. 
Upgrade to a bigger hotel room. Pay for executive lounge privileges. Whatever it takes to get you. 
6. Not wear makeup. 
At home maybe you never leave your house without full on face but on your adoption trip it is full in survival mode. You will never see most of these people again and the rest of the people in your travel group are too jet lagged/busy gazing at their new child to notice. 
7. Use or pass up a squatty potty. 
I promise you we all feel the same way about them. There is no judgement either way. 
8. Take food from the breakfast buffet for later. 
Yes that is a banana in my pocket. 
9. Ask stupid questions. 
We were all wondering the same thing probably. 
10.  Talk to strangers in elevators. 
        If you get on an elevator and see a Caucasian family with an Asian baby it is perfectly acceptible née even expected to make small or not so small talk. You have joined a very special fraternity enjoy it. 
11. Think you got the best kid in China. 
You'd be wrong because I got the best 3 in the whole country but go ahead and think that. 

One day left!

Today is our last day in China!  Tomorrow morning we leave the hotel at 5:30 am(5:30 pm for those of you at home) and take a van to Hong Kong. 
For those of you who know my sister, we tease her about having carcalepsy. That is if she is a passenger in a moving vehicle she falls asleep, almost always. Her namesake(she and Betty-June dare the middle name Dareline ) has the same syndrome. Unless we are on the bus with other kids she fall asleep. Hopefully tomorrow will be no different. 
3ish hours to the Hong Kong airport then we catch a flight just before noon(midnight) for Chicago, go thru customs and immigration and then on to Pittsburgh. Once we land in Chicago. Bett-June will no longer be a citizen of China but an American citizen. And Hallelujah we will be almost home!
And that is all possible because we had our consulate appointment yesterday morning. My girl was dressed in red, white and blue for this monumental occasion. The appt itself is a tad anticlimactic. About 50 parents crowd around an officer behind a window and take an oath. Then we are called up one by one give them our paperwork folder, then go to the first window again and get fingerprinted again. Then you leave. That's it. No flag waving, no Star-Spangled Banner, no John Phillips Sousa, not even any John Denver. But it gets the job done. 
Last night she and I went on the Pearl River Cruise with our group. Ya, that was an experience. The food was authentic. How's that for PC. Some if it was really good. We had ice cream for dessert. It was purple. One if the other moms and I made a game of guessing the flavor. Sweet potato?  Corn? Turns out it was taro. Close enough. 
Chen Ancestral Hall
Below statue is called Suffering From Indolence
Our grocery stash!