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.
Did I mention how stinkin’ grateful I would be if you helped out? Because I really would be, really.
THANK YOU so much!!
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).
HI
Lindsey Li
Home 7/07
SN unrepaired CL/CP
Agency: ASIA of Oregon
Helpful info: cleftline.org
Shriners Hospital of Portland
Perfect!
Thank you Tammy and Kathy!! I am so grateful for your help on this 🙂
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
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?
Do you want medical special needs only, or would you consider SPD as part of that group?
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
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
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
Wow, guys, THANKS for taking the time to share your child(ren)’s info, it’s a HUGE help 🙂
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.
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.
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!
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!
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
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
I am emailing you now.
xoxo Michele
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/
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.
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
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……
Stephanie – Do you need information on Thalassemia/Trait? I can provide a list of contact and organizations.
YES! That info would be GREAT 🙂
Thank you!!
Hi Stefanie,
Chaislyn
Home: 10/06
SN: imperforate anus
Agency: IAAP
Helpful info: http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/default.htm
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
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
Makenna LinYin
Home 8/08
SN: VSD/ HEP B
Agency CCAI
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.
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
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
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.
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
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
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
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
🙂
-Nicole
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
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.
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
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
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
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.
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
Colm Cole Geiger
Home 3/08
SN: Cerebral Palsy
Agency: AWAA
CHOP International Adoption Clinic
Happy to share 🙂
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.
Does strong willed count as a special need?? 🙂
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.
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.
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
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!!!
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 🙂
“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
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!
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.
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
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
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
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
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
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!
Ruby Ming Catherine Skubella
Home: 07/04/08
SN: Age (10 1/2)and language barrier
Agency: A Helping Hand