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Ni Hao Y'all

when east meets south

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Calling all special needs parents

I am compiling a list of special needs, agencies and resources. I would be SO grateful to you guys if you would take a minute and send me any or all of the following:

1) your child’s SN (and if they are home, approximately when they came home)
2) your agency and contact info if necessary
3) any resources that you found particularly helpful when researching your child’s SN

Feel free to leave a comment or email me privately at chrisnstefanie@gmail.com.
Did I mention how stinkin’ grateful I would be if you helped out? Because I really would be, really.

THANK YOU so much!!

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11.13.08 · Uncategorized 59

Comments

  1. Tammy says

    November 13, 2008 at 9:59 PM

    I’d be happy to help!

    Madilyn Grace
    Home: 3/08
    SN: Unrepaired Cleft Lip/Palate
    Agency: Lifeline Children’s Services
    Helpful Sites: Yahoo AdoptCleft Board, http://www.cleftline.org, http://www.widesmiles.org

    BTW, http://www.ourchinesechildren.com
    is a great database of children adopted from China (NSN and SN).

    Reply
  2. Lindsey's mom says

    November 13, 2008 at 11:20 PM

    HI
    Lindsey Li
    Home 7/07
    SN unrepaired CL/CP
    Agency: ASIA of Oregon
    Helpful info: cleftline.org
    Shriners Hospital of Portland

    Reply
  3. Stefanie says

    November 13, 2008 at 11:37 PM

    Perfect!
    Thank you Tammy and Kathy!! I am so grateful for your help on this ๐Ÿ™‚

    Reply
  4. Jodi says

    November 13, 2008 at 11:49 PM

    Our SN girls from China are:
    Jailyn Hope
    Home 2/07
    SN: Unrepaired Cleft Lip/Palate
    Agency: Lifeline Children’s Services
    2908 Pump House Road
    Birmingham AL 35243
    http://www.lifelineadoption.org

    Jorja Noelle
    Waiting to be united!!! TA 07-24-08
    SN: Hep B
    Agency: Lifeline Children’s Services
    2908 Pump House Road
    Birmingham, AL 35243
    http://www.lifelineadoption.org

    Reply
  5. Denise says

    November 14, 2008 at 12:09 AM

    Maggie Mae
    Home 4/11/08
    SN: repaired VSD/possible Hep B
    Agency: AWAA
    http://www.awaa.org
    Helpful sites~
    China Heart Children yahoo group
    Waiting Children SN China yahoo group
    hbv-adoption yahoo group
    *all of these I think you are a member of?

    Reply
  6. a Tonggu Momma says

    November 14, 2008 at 12:30 AM

    Do you want medical special needs only, or would you consider SPD as part of that group?

    Reply
  7. Sherri says

    November 14, 2008 at 12:40 AM

    Here’s my contribution:

    Mia Eliana
    home: 4/07
    SN: Missing left arm entirely (probable amniotic banding)
    Agency: Lifeline Children’s Services
    http://www.lifelineadoption.org
    Helpful sites: Yahoo group Adopting Children With Limb Differences

    Sherri

    Reply
  8. The Sharp Family says

    November 14, 2008 at 12:42 AM

    Hi!

    Norah Catherine
    Home 07/08
    SN: Hemihypertrophy/Hemihyperplasia
    Agency: CCAI
    Sites:www.hemisupport.com

    Glad to help! This is a pretty rare SN… Ask away if you need to!!

    Penny

    Reply
  9. Mom to five says

    November 14, 2008 at 12:53 AM

    Fengmei
    home 9/18/06
    SN: club foot
    Agency: Villa Hope

    Xin Jie
    home 9/5/2008
    SN: cleft lip/ palate
    Helpful sites: Yahoo cleft board
    Agency: Wasatch International

    Reply
  10. Stefanie says

    November 14, 2008 at 1:07 AM

    Wow, guys, THANKS for taking the time to share your child(ren)’s info, it’s a HUGE help ๐Ÿ™‚

    Reply
  11. Jill says

    November 14, 2008 at 1:09 AM

    Not a problem!
    Lucy LiKun
    Home 5-07
    SN: HepB+
    Agency: CCAI
    Helpful places: Sorry, no sites. Mostly from the International Clinic at Children’s Hosp of Columbus, Ohio and other families.

    Reply
  12. Michelle says

    November 14, 2008 at 1:17 AM

    Hi Stefanie,

    Mia An Qi
    Home: 12/06
    SN: VSD & ASD (Known VSD; ASD found once we returned home)
    Agency: FTIA
    http://www.ftia.org
    Resources: I found the International Adoption Clinic at our local children's hospital to be the best resource.

    Reply
  13. beck says

    November 14, 2008 at 1:22 AM

    Nola Ann Chu Qi
    Home March 2007
    SN Brachial Plexus Injury to Right Arm
    Agency FTIA Families Thru International Adoption
    Shriners Children’s Hospital in Philly
    hope this helps!

    Reply
  14. beck says

    November 14, 2008 at 1:24 AM

    Nola Ann Chu Qi
    Home 3/07
    SN Brachial Plexus Right Arm
    Agency FTIA Families Thru International Adoption

    Since home Shriner Children’s Hospital in Philadelphia has been amazing

    Hope this helps!

    Reply
  15. Jenn says

    November 14, 2008 at 1:31 AM

    Hey Stefanie! :o)

    Karleigh Mei–waiting not so patiently for TA

    SN: corneal staphyloma and partial absence of right eyelid
    Agency: AWAA http://www.awaa.org
    Wish to heck I knew of a helpful resource…anyone??

    Blessings!
    Jenn

    Reply
  16. Ashley and Mike says

    November 14, 2008 at 1:38 AM

    Piper QiuHan
    On Day 90 for LOA

    SN: Strabismus and most likely amblyoplia

    Agency: CCAI

    Helpful Sites: http://www.strabismus.org, http://www.preventblindness.com, http://www.aapos.com

    Reply
  17. Team Houston says

    November 14, 2008 at 1:46 AM

    I am emailing you now.

    xoxo Michele

    Reply
  18. Cara says

    November 14, 2008 at 1:52 AM

    I’m happy to help!

    Silas Charles Tuan
    Home: 7/08
    Special need: bilateral microtia and atresia (ear deformity of both ears)
    Agency: A Helping Hand
    Resources: http://www.microtia.us.com/

    Reply
  19. Valerie says

    November 14, 2008 at 2:23 AM

    Lydia, adopted 10/05

    SN: VSD (ventricular septal defect (hole in her heart))

    Repaired 11/07 at the Sanger Clinic in Charlotte, NC

    Agency: Dillon Int’l – http://www.dillonadopt.com/

    Resources: A very good pediatrician who took the time before we came home to explain the issue and the possible outcomes. A renowned pediatric cardiology clinic that even had a Chinese sonogram tech to help calm L when she had her first check-up at 1 week home.

    Reply
  20. Chad and Tara says

    November 14, 2008 at 2:28 AM

    Child’s name: Ava Lan
    Special need: cleft lip and palate, adopted at age 3 1/2, home for 6 months now!

    I enjoy your blog.

    Tara

    Reply
  21. Amy says

    November 14, 2008 at 2:52 AM

    Mina Faith Kangni
    Sacroccogyeal Teratoma
    (tumor and coccyx bone removed in China)
    CWA agency

    Not to many useful sites,,, I did find a few other parents and spoke with them. not a very common SN..
    I have been researching different SN and have been wondering about the ones that are not as common. I have been looking at the most current Shared lists and looking up all the ones that I have never heard of……

    Reply
  22. bytheriver says

    November 14, 2008 at 3:04 AM

    Stephanie – Do you need information on Thalassemia/Trait? I can provide a list of contact and organizations.

    Reply
  23. Stefanie says

    November 14, 2008 at 3:08 AM

    YES! That info would be GREAT ๐Ÿ™‚
    Thank you!!

    Reply
  24. Lynn says

    November 14, 2008 at 3:14 AM

    Hi Stefanie,

    Chaislyn
    Home: 10/06
    SN: imperforate anus
    Agency: IAAP
    Helpful info: http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/default.htm

    Reply
  25. Anna 'B'anana says

    November 14, 2008 at 3:47 AM

    I would love to help out:

    Sarah Ann Bearden
    Home: 09/07
    SN: Complex CHD
    Agency: CCAI
    Hospital: Doernbecher’s Childrens Hospital in Portland, OR
    Helpful Sites: John Hopkins, Yahoo ChinaHeartChild Board

    Reply
  26. Rhonda says

    November 14, 2008 at 10:31 AM

    Sarah Lyn XiuYi
    Home: 6/07
    SN: Unrepaired Cleft Lip/Palate
    Agency: WACAP
    Helpful Site: groups.yahoo.com/adoptcleft, http://www.cleftline.org, http://www.widesmiles.org, Shiners Children’s Hospital in Portland, OR

    Reply
  27. Michelle says

    November 14, 2008 at 12:59 PM

    Makenna LinYin
    Home 8/08
    SN: VSD/ HEP B
    Agency CCAI

    Reply
  28. Paul and Chelsea Gour says

    November 14, 2008 at 2:44 PM

    Love to help!

    Claire Hope Kangtong
    Home:5/08
    SN:Repaired Myelomeningocele (spina bifida) and unrepaired right club foot and left vertical talus (opposite of club foot).
    Agency: Children’s Hope International
    Helpful Resources: Yahoo group-nosurgery4clubfoot. Dr. Dobbs at Shrinners, St. Louis, for the vertical talus- he’s an expert at this defect. Most doctors thought it was also a club foot so most children will not be diagnosed with vertical talus.
    Spina Bifida Association of America, ssba.org.

    Reply
  29. Amy says

    November 14, 2008 at 3:06 PM

    Hi been following your blogs for a long long time, Love them. very inspirational.

    ChuYu Rao (we have not chosen her name yet)
    Not home yet Gotcha day 11/23/08
    SN: CL repaired in China CP not repaired, Hep B
    Helpful Sites: Yahoo Adoptcleft, Widesmiles.org, myadoptionwebsite.com blogs

    Reply
  30. Barbie says

    November 14, 2008 at 3:14 PM

    This is a great thing for you to do!

    Ryan
    SN: repaired cleft lip, unrepaired cleft palate.
    HOME: 3/07
    AGENCY: Harrah’s
    HELP: widesmiles.org, cleftline.org

    Reply
  31. living4him5 says

    November 14, 2008 at 4:15 PM

    So happy to help!

    Linzhi Rose Xiao Li

    Home 11/07

    SN:Arthrogryposis (not diagnosed until we were home)

    Agency: Great Wall China Adoption (Kim)

    Helpful sites: AMCsupport.org; TAG.org and Shriners Hospital, Chicago.

    Reply
  32. One Happy Momma says

    November 14, 2008 at 7:18 PM

    Camie Yong Ju
    Home: 5/07
    SN: Cleft Lip and Palate
    Agency: American’s Adopting Orphans
    Helpful info:
    Center of Adoption Medicine
    http://www.adoptmed.org
    Shriners Children Hospital of Portland, OR

    Reply
  33. Donna says

    November 14, 2008 at 7:35 PM

    Cara Tianyu
    Home: 6/05
    SN: repaired cleft lip/unrepaired palate
    Agency: CHSFS
    Helpful info:
    http://www.cleftline.org, http://www.rainbowkids.org, Children’s National Medical Center

    Reply
  34. Rebecca says

    November 14, 2008 at 8:29 PM

    Maylee Hope
    (coming home next month, hopefully)
    Spina Bifida
    Agency: Hand in Hand, United in Hope Pilot program
    Helpful info: China Spina Bifida yahoo group

    http://www.livinginrainbowworld.blogspot.com

    Reply
  35. Nicole says

    November 14, 2008 at 8:34 PM

    Here is our contribution!

    Luke Kellan Gabriel
    Home: 5/07
    SN: cleft lip and palate, both repaired at adoption
    Agency: Lifeline Children’s Services

    Logan Elijah Christian
    Home: 10/08
    SN: Cleft lip and palate, lip repaired at adoption
    Agency: Heritage Adoption Services

    ๐Ÿ™‚
    -Nicole

    Reply
  36. Our 7 Blessings from God says

    November 14, 2008 at 9:14 PM

    Will
    Home: 1/06
    SN: Cleft lip/cleft palate
    (both repaired in China- thanks to the Philip Hayden Foundation!)
    Helpful sites: yahoo groups, adopt cleft & cleft kids

    Levi
    Home: 7/07
    SN: Congenital Ectodermal Dysplasia
    Agency: CCAI
    http://www.chinesechildren.org
    Helpful sites: http://www.nfed.org

    Reply
  37. Qiuqiu's parents says

    November 14, 2008 at 11:33 PM

    Flynn QiuQiu
    Home 08/06/08
    SN unrepaired cl/cp
    Agency: CCAI Colorado
    Helpful sites: Yahoo adoptcleft board, LWB’s cleft clinic blog, cleftline.org.
    Note: The single most outstanding bit of useful information about the condition, which is surprisingly NOT easy to discover, is that the vast majority of children with a cleft condition will need multiple surgeries in the course of their early lives…and I mean more than a dozen, including major and minor procedures. Speech therapy is also a big part of the equation. I’m not sure why most people don’t know this. It does not (at least to our minds) make the condition any more frightening – but it’s an important thing to know and be prepared for, both financially and emotionally. The child will get used to it, as will the parents. But it strange that you will not hear this basic fact, even from most medical professionals. It’s very important to go to a cleft clinic at a local children’s hospital BEFORE adopting your child, so that you really have a clear understanding of the various medical procedures involved.
    We found that the most difficult thing was to convince our families that there would in fact be many, many surgeries over the years, and that this was normal and manageable. To some people, this sounds shocking – like a “life sentence”. But it isn’t. It quickly just becomes a normal part of life, like taxes and chores. It is, however, par for the course, and people should know that.

    Reply
  38. Waiting for Mia Hope! says

    November 15, 2008 at 3:41 AM

    Mia Hope YiNan
    Waiting to come home
    SN: repaired cleft palate – cerebral palsy – extra digits on both hands
    Agency: Living Hope
    http://www.livinghopeadoption.org
    Helpful Resource:
    Adopting_Children_with_Cerebral_Palsy@yahoogroups.com

    Reply
  39. Chad and Sandy says

    November 15, 2008 at 4:14 PM

    Sydney
    Home:12/06
    SN: NF1(neurofibromatosis type 1),Concave Chest(pectus excavatum)
    Agency: A Helping Hand
    http://www.worldadoptions.org

    BTW Sydney was misdiagnosed – her original diagnosis in China was cavernous hemangioma. So I know a bit about that as well.

    Sandy

    Reply
  40. Becky says

    November 15, 2008 at 6:33 PM

    Here you go!

    Cassie Linghua
    Home 4/08
    SN: unrepaired VSD
    Agency: CCAI
    Helpful things: Yahoo China hearts site, Dr. lars Erikson (sorry, forgetting how to spell, have no time to look up!), CCAI SN group.

    My most helpful thing was to speak to real people who dealt with these things personally. I like to hear from Docs, but feel like another parent can tell me what it will REALLY be like!
    Btw-we researched tons of SN, and hands down, it was the personal stories that helped me.

    Becky

    Reply
  41. tiffany says

    November 15, 2008 at 7:18 PM

    Levi WenYu
    Ours 5/07
    SN:
    (as listed in his file):
    -PDA (heart condition)
    -external hydrocephalus (based on large head size)
    -possible atrophy to cerebrum

    (only the heart turned out to be an issue and required a surgery and is now considered repaired. the other issues simply do not exist in our little man)

    Agency- CCAI

    Helpful sites- none really. drs at Denver Children’s Hospital were our best resource.

    Reply
  42. familyof8 says

    November 16, 2008 at 3:42 AM

    Glad to share…
    Emily Wan Ye
    Home 8/8/08
    SN: Bilateral Absent of Thumbs
    Short Radius Bones
    Minor heart defect found once home will correct in cath lab.
    Agency:Lifeline did homestudy
    Madison Adoption Associates
    I found other parents an our international adoption clinic to be the most helpful

    Blessings,
    Christine

    Reply
  43. Fiona Geiger says

    November 16, 2008 at 5:01 AM

    Colm Cole Geiger
    Home 3/08
    SN: Cerebral Palsy
    Agency: AWAA

    CHOP International Adoption Clinic

    Reply
  44. Kim says

    November 16, 2008 at 7:45 AM

    Happy to share ๐Ÿ™‚

    Sophie Mei LuQian
    Home: 9/08
    SN: Repaired VSD, developmental delay
    Agency: CCAI
    Helful Information: CCAI website, WC Yahoo Group for CCAI, myadoptionwebsite.com, and blogs of families who had adopted children through the WC program.

    Reply
  45. Blessed says

    November 16, 2008 at 8:37 AM

    Does strong willed count as a special need?? ๐Ÿ™‚

    Christian Liu – from Dong Guan
    Home – May 2008

    Repaired cleft lip
    Unrepaired cleft palate

    Agency: Nightlight Christian Adoptions

    We go to the Craniofacial Team at Children’s Hospital of Orange County (CHOC). We will meet with them once a year and they will monitor Christian’s progress, letting us know what will need to be done when.

    He’s already had surgeries to insert ear tubes and he’s had his palate repaired. Both surgeries were done at CHOC. They are great.

    Helpful Yahoo group: adoptcleft@yahoogroups.com

    It can take months to get in to see a Craniofacial Team. It’s a good idea to make your appointment once you receive LOA.

    Reply
  46. Lynn says

    November 16, 2008 at 1:31 PM

    Here ya go-
    Thomas
    Not home yet – hoping for Jan/Feb
    SN: Congenital Cataracts in both eyes. Surgery at 9 months.
    Agency: GWCA
    Resources: I’m with Jenn. Couldn’t find anything eye related. Talked with a Pediatric Opthamalogist.

    Reply
  47. anne & mike says

    November 16, 2008 at 2:33 PM

    Hi!
    Luke Jun
    Home 2/08
    SN: bilateral club feet, hernia, undescended testicle, stage three malnutrition, developmental delay
    Agency: CCAI
    helpful if in Atlanta area http://www.mypedsortho.com/ Dr. Stephanie Martin

    Hong Dai Jie
    Home ?
    SN missing feet from ankle joint, 4 shortened fingers
    Agency WACAP
    Helpful Site: yahoo group for chinese children with limb differences

    Reply
  48. Chris B says

    November 16, 2008 at 8:11 PM

    I hope I am not too late to help out…
    (I've been out of town for a couple of days.)

    Shea
    Home: Feb. 2007
    SN: Unrepaired cleft palate
    (cleft lip was repaired in China)
    Agency: All God's Children International
    Resources: Texas Children's Hospital & Children's Hospital of Wisconsin

    Avery
    Not home yet….:(
    SN: Abnormal Sleep EEG
    Agency: All God's Children International
    Resource: Children's Hospital of Wisconsin

    Can't wait to see what you are "cooking" up!!!

    Reply
  49. Anonymous says

    November 16, 2008 at 9:16 PM

    Sorry I’m late. Been out of town.

    MeiMei
    Home 8/05
    SN: above knee amputee/ PFFD/FH
    Agency: CCAI
    Resource: Limb deficiency team at CHOA-Scottish Rite-Atlanta

    Mac
    Home ’98
    SN: hearing loss
    Agency: CCAI
    resource: audiologists ๐Ÿ™‚

    Reply
  50. Melissa says

    November 16, 2008 at 9:56 PM

    “Wen”
    Awaiting LOA
    SN: Hearing Impaired
    Agency: Great Wall China Adoption
    Helpful Sites: Yahoo DeafHOH-Adoption Group; also I’m an Audiologist so I guess I’ve been a resource to myself!

    Good Luck with whatever wonderful thing you’re doing!
    Melissa Neyland

    Reply
  51. Patty says

    November 16, 2008 at 11:13 PM

    I may be too late but here’s another for ya!

    Brady
    Home 4/06
    Agency:WACAP
    SN: Limb difference–Missing two fingers, and two fingers webbed together.

    Most helpful resource:
    Childrens Hospital, Seattle
    Dr.Hanel–orthopedics
    And Ultimately our adult friend who only has a thumb on one hand. We really don’t even see it as a SN because of knowing our friend!

    Reply
  52. Heather Thompson says

    November 17, 2008 at 12:27 AM

    I'm excited to see what you're working on!

    Drew FuPeng
    Home- December 2008 or early January 2009 (waiting on TA)
    Agency- CCAI (chinesechildren.org)
    SN- microtia & atresia of the left ear
    Helpful Sites- CCAIWCP yahoo group; Microtia/atresia yahoo group; blog of another family SeekingOurSilas.blogspot.com to see how normal this can be to live with!; speaking with local audiologist at FSU regarding condition and treatments/options.

    Reply
  53. JShannon says

    November 17, 2008 at 2:44 AM

    Malia Jo
    Home 08/07
    SN-Cerebral palsy
    Agency CCAI/Co
    helpfull sites- hemi-kids list. various Cerebral palsy lists and lots of reading on the internet

    Reply
  54. MississippiZen says

    November 17, 2008 at 2:45 AM

    Stefanie,
    I’m glad to help with Raegan’s information but I’m out of town until mid week. I’ll send it to you then.

    Margie

    Reply
  55. bbmomof2boys says

    November 17, 2008 at 3:37 PM

    Hi Steph,

    You know Tiana’s stuff – we met in China when you and Chris were getting your precious son!

    Tiana Claire
    Home: 6/2008
    SN: VSD
    Agency: CCAI

    When we got her file we immediately sent it to a pediatric cardiologist at East Carolina University where I worked at. They are a very good hosptial for heart babies!!

    Please let me know if you need any help with anything for your special project. I’d be more than glad to help you out!

    Hugs,
    Carla

    Reply
  56. Mandi says

    November 17, 2008 at 3:44 PM

    This is a little late, but I wanted to jump on board as well.

    Mylee Zhao Lu-Ann
    Home: May 22, 2008
    SN: Club Feet and Hyper-extended kness
    Agency: Hand In Hand of Indiana
    Helpful Sites: Yahoon Nanjing Group, Dr. Ponsetti at Univeristy of Iowa (thanks Stefanie)

    I can’t wait to see what you have been working on. Knowing you it is going to benefit alot children.

    Mandi

    Reply
  57. HeatherMN says

    November 17, 2008 at 11:17 PM

    I'm just now getting around to reading your post and I would be happy to help out!

    Emma Elizabeth-Wei
    Home: 7/08
    SN: Club Foot (left)
    Agency: Children's Home Society & Family Services
    Helpful Sites: http://www.ponseti.info, http://www.six-feet.com, orthoinfo.aaos.org, chinaadopttalk.com

    There were many other sites that I used on a regular basis, but these were some that I found especially useful. I used Chinaadopttalk.com primarily to connect with other parents of children adopted from China, including those with special needs.

    Oh — and then there were things like this that helped me through my journey with secondary infertility, my decision to adopt, and my wait for my daughter:

    1. http://www.youtube.com/watch?v=IV9jiqS-74g&feature=related

    2. http://www.theinterviewwithgod.com/

    3. http://www.cmu.edu/homepage/multimedia/randy-pausch-lecture.shtml

    Reply
  58. Donna says

    November 21, 2008 at 10:30 PM

    As blessed parents of three, we believe that all kids have special needs to one degree or another. The difference with kids adopted from Waiting Child lists is that you have a little more advanced notice about the most obvious challenges your child will face. With that in mind, here’s our “SN” child:

    Maddy
    Home: 8/2006
    SN: Unrepaired Cleft Palate
    Agency: US Asian Affairs

    Additionally, we have dealt with other “surprise SN’s” such as undescended testicle, febrile seizures, sacral dimple, tied tongue and severe food aversions (not allergies).

    If anyone has any questions about any of this, please feel free to contact me.

    Donna
    Our Blog: Double Happiness!

    Reply
  59. Skubella Family says

    January 19, 2009 at 10:45 PM

    Ruby Ming Catherine Skubella
    Home: 07/04/08
    SN: Age (10 1/2)and language barrier
    Agency: A Helping Hand

    Reply

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I'm Stefanie. Wife to one, mom to 13. Occasional blogger and t-shirt maker. Wannabe photographer and exerciser. Constant grace-needer and orphan advocator. more
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