29 Responses to “Special Needs Discussion – Bone, muscle, and joint conditions (including missing limbs)”

1. lojeslj Says:
   March 16th, 2011 at 8:02 am

   Ds had bilateral clubfoot and arthrogryposis (AMC). He came home at 21 months, and we began casting using the Ponseti method 2 months later. His AMC made his cf severe. His ankles were basically fused. Due to this, it took several more casts than usual. The standard treatment is 5-9 casts and ds had 12. The casts are changed every 5-7 days. Ds could crawl in them, and by the end was walking, running, and dancing in them. He then had a tenotomy, to lengthen the typically short achillle’s tendon that cf kids have. That is usually an office procedure done under local anesthetic with babies. Because ds was older, we did it in an OR under general anesthesia. I did not want him traumatized by being held down, etc. He then wore a special brace which yokes the two feet together and holds the feet at a specific angle. First he wore the brace 23 hours/day, but as he had been walking and running prior to casting, he was quickly transitioned to bracing at nights/naps only. Walking on the feet will prevent relapse better than just the brace. He wore the brace while sleeping until he turned 5. It was not an issue with him, and just part of his bed time routine.

   He now runs and jumps like any 5 year old. His ankles are still very stiff, and he has little movement in them due to the AMC. That is not correctable, but it does not slow him down at all. He has skinny bird legs, also typical of cf kids. Their calve muscle is also underdeveloped. His ankles are a bit funky looking, but not bad.

   A consideration for Ponseti treatment in these kids is that there are not as many doctors with experience treating older children (older than newborns). We traveled 4.5 hours each way, once a week, for almost 20 weeks to ds’s doctor. That was not in our plans originally, but no one closer was capable. There is a very good yahoo group nosurgery4clubfoot which can give recommendations on doctors.

   A big argument in cf circles is surgery vs casting. As a surgeon myself, I think casting is vastly superior. Much less trauma to the tissue, and a more anatomic correction can be achieved. With that said, some kids need surgery regardless, and even Dr. Ponseti had a 5% surgery rate.

   Ds’s AMC has not been an issue either. It was undiagnosed in China, but was apparent to us within 24 hours. His wrists do not bend backwards at all. Not an issue unless he is crawling or playing the piano. He will not be a world class gymnast. He has one shoulder that does not extend the entire way up. His wrists could have been treated by splints as a child. It is too late now and anything we do would compromise his otherwise very good joint function in all other directions.

   Ds does not have any other syndromes, nerve damage, etc, that can sometimes be found in cf kids.

   We considered cf a minor need. While it was time intensive early on, it is now a non-issue. He will see his doctor once a year until he stops growing.

2. strawberryshortcake Says:
   March 16th, 2011 at 10:40 am

   We adopted Big Girl 3 1/2 months ago at 9.5. She was listed as: Agenesis of left upper and lower limb. We had photos that showed her left arm didn’t straighten.

   Drs quickly refuted that diagnosis as saying that they wouldn’t have grown at all then. They cautioned there could be CP at play. They believed her arm joint was fused and wouldn’t rotate.

   We got home and this is what we found: They had the wrong leg. The right leg was the shorter one, by 3.5cm. Her arm was not fused. She has a congenital condition called radial bone dislocation. We found a slight scoliosis curve also, not uncommon considering China never corrected her gait with orthotics of any sort. We had the word “syndrome” thrown about…a lot. She also had a shortened middle finger bone in her hand causing her middle finger to be of different length.

   If the limb diff is over 5cm, the kids have to have their limbs lengthened – a procedure of 6+ months. It’s a hard hard procedure to go thru.

   Luckily, yesterday, Children’s memorial ruled out genetic issues. And she’s a prime candidate for a limb shortening of the good leg – an outpatient procedure where they stop the growth of the long leg at the point it hits the length the short leg is going to grow to naturally. We got lucky – China did not document anything at all really.

   She wears a 1″ rise in her right shoe right now, and she’ll have her surgery when she’s 13 or 14. Her orthodontia, eyeglasses etc are way more time consuming right now.

3. dajnd678 Says:
   March 16th, 2011 at 11:54 am

   We have a daughter who is missing her entire right arm and shoulder. When we got our referral for her, the information said she was missing her arm at her shoulder joint. The pictures of her weren’t clear, but we went ahead anyway.

   She just turned 4 and she is amazing. She has a partial scapula and partial clavical, but has no other issues. She has had both Occupational and Physical therapy through our local ESD and they have been great. She no longer qualifies for ESD help because she is doing wonderfully.

   We take her to Shriner’s Hospital in our area once a year to assess her and talk about Prosthetics, but honestly i don’t think at this time prosthetics would be helpful for her, and our Doctors at Shriner’s agree. Someday she might want a Prosthetic arm, but not now. She uses her left foot as an arm and is pretty comfortable with that. She can do so much with her one arm and it doesn’t slow her down at all.

   I consider her limb difference a minor need. No surgeries expected and no other issues with her LD at this point. The biggest issue we have had regarding her LD has been finding the right shirts to stay on her since she has no shoulder.

   We adopted her at 2 and have had more issues with attachment than we have had with her LD.

   I do know that with some LD kids, there can be syndromes, but with our daughter there is none.

4. chrisnstefanie Says:
   March 16th, 2011 at 11:54 am

   We have adopted two boys from China with a Dx of unrepaired bilateral clubfoot. Both had straightforward cases of clubfoot – one son required 7 sets of casts and the other 6 sets to achieve full correction.

   For us, it was best to travel straight to the one who founded the Ponseti method, Dr. Ponseti, who was still treating patients in Iowa when we brought our sons home. We were very concerned that our local provider would struggle with treating an ‘older’ child correctly and we didn’t want to take a chance with our sons feet! We worked with Dr. Ponseti and Dr. Morcuende, who studied under Dr. Ponseti for years and worked with him at U of I until Dr. P died in 2009. Dr. Morcuende was/is fantastic with both our boys, the result achieved is amazing, and our boys have no limitations or pain.

   I do strongly recommend anyone considering clubfoot as a SN to be aware that surgery is most often not the best course of treatment, but it is necessary in a small percentage of instances, as lojeslj posted so well above. Honestly, we were shocked by how many “Ponseti trained” docs were telling us our boys, at 16 and 19 months of age, were “too old” for casting and that surgery would be necessary… without even looking at their feet! Both of them are living proof that this is NOT true. They are successfully casting kids past age 10 now, amazingly. So, please parents, do your homework. Get on the nosurgery4clubfoot yahoo group, ask questions to other clubfoot parents, doctors and providers, and don’t assume that just because your local doc recommends surgery, that it is the best/only option for your clubfoot child. Doctors prefer surgery because it is less time consuming and more lucrative, but for the child, surgery has all sorts of long term implications… future surgeries, early onset arthritis, etc.

   While clubfoot casting is laborious in the early months, we feel like has been an extremely easy special need. Once the casting/bracing phase is over (4-6 months) then the child goes into a night brace until age 5. Other than that there is NOTHING required. We visit the ortho once a year. Our boys can do anything they want now… it’s a true blessing to see the changes that casting can achieve :)

   You can see our little guys at our blog: http://nihaoyall.com

5. mariposac Says:
   March 16th, 2011 at 12:13 pm

   Our daughter ( 4 1/2, home one year) has fibular deficiency (fibular hemimelia), which means she is missing her fibula bone.

   The medical information in her referral stated “right limbs shorter than left, missing digits”. The photos showed only three toes on her right foot, four fingers on her right hand with two being partially fused.

   There were no xrays or scans in her file, so the IA doctors who reviewed it came to the conclusion that we would just need to have her shoes lifted and they may be able to correct the syndactyly of the fingers. After doing research on my own, everything pointed to Fibular Deficiency. We could have requested more medical information and hope her file wasn’t locked by someone else, but we were confident she was our daughter and decided we were comfortable with all scenarios.

   Fast forward to a few visits to Shriners Hospital and our suspicions were confirmed. She is missing the fibula. The length inequality of her legs is considerable (8+ cm) and would continue to increase. The lack of fibula means she has no ankle, so the lifted shoes do not work well for her since she has no stability.

   We were given three options. 1) do nothing, lift her shoes or use a brace for stability and deal with back and hip problems and possible scoliosis later; 2) leg lengthening surgery (which sounds horrific) but she is not a good candidate due to the large inequality; 3) amputation of her foot, leaving the heel pad intact and fit her for prosthesis.

   The tough thing for us is that she has adjusted amazingly well – this little girl can do anything and everything other kids can do. She jumps, runs, plays, climbs…nothing slows her down. She has a visible limp but most people don’t even notice. But, of course we are concerned about the long-term effects on her back and hips.

   The doctors at Shriners have encouraged us to proceed with their recommendation (prosthesis) sooner rather than later, definitely before she starts Kindergarten. We are introducing the concept to her now and she will soon meet other kids who have had the same procedure and are now proficient with their prosthetics.

   Feel free to contact me if you have any questions or just want to connect. My forum name is the same.

6. portlandval Says:
   March 16th, 2011 at 12:20 pm

   Hello to everyone…my DD was 31 months at adoption and was described in her medical report as having an extra thumb on her left hand and surgically corrected imperforate anus (IA) with vaginal fistula repaired. We have been home 2.5 years now.

   Upon meeting her, we noted immediately that her extra thumb was on her RIGHT hand and that she was quite delayed in her behavior. In the first year we had her medical condition worked up at my insistence because extra digits and IA can indicate a cluster of malformations in seven different systems. It is NOT called a “syndrome” because these are not expected to affect cognitive development or physical growth into adulthood. The development of the child in the first trimester goes haywire and all the systems forming at that time are affected.

   The acronym VACTERL association is often given to our children. V=vertebrae malformation, A=anal anomoly, C=cardiac, TE=trachea-esophagus, R=renal (kidneys) and L=limb differences. The National Institute of Health in the USA is trying to determine whether this cluster is due to biological, genetic or environmental issues. If you have 3 or 4 malformations you are considered to have a label of “VACTERL.”

   The medical report from China indicated that she had a repaired anoplasty at nine months. After a several month period of work ups we determined that she had:
   V=tethered spinal cord also known as spina bifida occulta where the bottom of the spine is tied so that nerves cannot float freely during growth. Left untreated it causes nerve damage. A little dimple in her back gave it away that she had to be looked at for this condition. Surgery corrected this problem for her 9 months home by neurosurgeon.
   A=her anoplasty was slightly misplaced and her continence unlikely. She also needs reconstruction of the vaginal wall because the fistual was never really closed and infection is possible. Surgery scheduled this summer at the #1 location for medical treatment of anorectal malformations in Cincinnati Children’s Hospital in Ohio. This ensures her the best chance of continence. We will travel across the country for this because local doctors/nurses do not have the knowledge that this center has for this condition.
   C=she had normal cardiac function and formation
   TE=by chance we discovered that her small intestines had not properly rotated into her abdominal wall in the the first trimester. Though she did not have the more common hole or lack of connection in the tracheoesophagus region, lower down she had a “malrotation” which could lead to twisting and cut off of blood supply and death. Urgent surgery for this was the #1 priority 6 months home once discovered
   R=sometimes these children can have urine backing up or reflux back into kidneys, damaging kidneys. Her urinary system is normal and she is continent. Many children with this condition also have urinary incontinence.
   L=extra thumb removed during spinal surgery by orthopedic surgeon. The extra digit we thought of as big in referral became quite a minior concern after work ups were done!

   Even with all these specialists and surgeries, the biggest challenge BY FAR were her delays and rages. I finally realized at some point that she would dissociate when she went into rages, meaning that she was no longer consciously there with me. All of her issues were PREverbal and I had to do NONverbal behaviors to reach her. As a big talker, this was very hard for me. I was fortunate enough to have a 3 month leave when we adopted her and I spent every waking hour with her then. After that I went back part-time. I only returned to full time work two months ago. But, this summer for her re-do anal surgery I will take a medical leave of 12 weeks because of my concern over regresson and the recovery in Ohio where we will stay away from our home for weeks and weeks.

   Nevertheless, after all this, DD is WONDERFUL, a CUTIE and the LOVE of OUR lives. Her older sister is a NSN adoptee and loves her to pieces. Love truly knows no bounds. DD2 is much more than her diagnosis. She is a survivor and warrior princess. She will start kindergarten on time and the only vestige of her condition that people can see is her speech delay. Nothing else is seen or observed by others. I have to say that I had read ALL this info about VACTERL BEFORE the adoption and thought “China would have noted that problem or issue.” WRONG. I was very wrong about that. However, I knew that the little girl I saw in the referral picture was our daughter the first time I saw her….no others had reached my heart like her. We are so fortunate to have the resources and training to help her in my job and in our community. When I met her in China, I was very afraid of the future but no longer. Now, there are only possibilities and we are hoping all goes well in Ohio this summer for her. Bottomline…extra fingers can mean more issues and just be sure to work it up once you get home. Her pediatrician was clueless as to her complexity but allowed me to manage her medical case. We are very lucky indeed.

7. chrisnstefanie Says:
   March 16th, 2011 at 12:48 pm

   We also have a daughter whose referral included a Dx of bilateral clubfoot, bilateral arm deformity, possible Madelung’s deformity and possible dwarfism. She was adopted at 26 months and has been home for 14 months. And she is an absolute JOY!

   She started in OT and PT, understandably, but has graduated from OT completely, despite her radial deformity (curved, shortened forearms) and dislocated elbows – because she just doesn’t let anything stop her! She sees the PT every few months to check on her SMO’s, but other than that we are just watching her blossom! She had been treated for her clubfoot in China and evidently spent many many months in casts. So she was very behind physically at adoption. But now she can go up and down steps, alternating going up, even! She can jump, run, pedal a tricycle… and do all sorts of things we worried she might never be able to do with her issues.

   She does have skeletal dysplaysia (aka dwarfism) but even after several visits to the specialists, we are not sure what that will mean for her. She has a form that we haven’t been able to pinpoint yet, our docs and geneticists are sort of stumped, there are so many forms of dwarfism – our girl is something special for sure!

   We knew so little about skeletal dysplaysia before we brought her home, and she is the first child in our family that has a physical deformity. I expect that this will bring on additional emotional issues for her as she gets older and begins school, with teasing, etc. but for now she thinks she is queen of the castle :)

   We would definitely consider another child with these needs. She has given all of us a whole new perspective on being able to do things that are seemingly impossible, simply because you have the will and the desire to try!

8. miamari Says:
   March 16th, 2011 at 2:03 pm

   We adopted our daughter in October 2007, at 13 months old. She was diagnosed with microtia and atresia on the left ear, plus left hand polydactyly and syndactyly: two pairs of webbed fingers and an extra finger. There were also some minor indications in the medical reports that she might have hearing loss in her right ear as well.

   On gotcha day, we were informed that there was something wrong with her spine, but due to the language barrier, they could not really tell us exactly what. However, we were not too worried – her back looked just fine, and she was a sweet and healthy baby who seemed to be on target in all areas except for some delays in the gross motor skills. She had been in foster care and had obviously been well taken care of. She could sit well without support, but not crawl or stand up, and she could just barely roll over. She could walk if we supported her with both hands.

   Fast forward 3 1/2 years. She is now 4 1/2 years old and has been through two hand surgeries, one to separate each pair of webbed fingers. Her left hand now looks normal, except that she cannot bend or stretch her index finger very much, and she has, of course, scars – skin was grafted from her hip to replace what was missing on her fingers. She wears a hand brace at night to make the index finger a bit straighter. Sometimes she will look at her left index finger and say “I don’t want to have a finger like this!”, but most of the time, the hand is a complete non-issue.

   Her back still looks straight to an untrained eye. It has been x-rayed (she was put under sedation twice for the x-rays), and it has been determined that she has hemivertebra. This might lead to scoliosis as she grows, or it might not. If it does, she will probably need surgery. The last doctor we met said that her back will probably stay straight and surgery will probably not be necessary. Time will tell. From now, her back will be x-rayed (without sedation) once a year.

   She has had hear hearing tested several times, and she has full hearing on her right ear. We believe that she has some hearing on her left ear as well, but we do not know for sure. The only difference from a child with normal hearing is that she has a hard time locating the direction of sounds. She also seems to get tired sooner than other kids in noisy settings such as daycare, which might be because of the unilateral hearing loss.

   She has by now noticed that her left ear is different, but does not seem to think it is a big deal. We do worry a bit about bullying later, however. She will probably have surgery to create a new outer ear when she is about 7-8 years old. Most kids have the surgery at about 6 years old, but since she is rather small for her age, she has to wait until she reaches a certain physical size.

   When she is a teenager, she might, if she wishes, have another surgery to reconstruct the hearing canal, which will probably improve her hearing on the left ear.
   Her speech is fairly good, but slightly nasal and she has trouble with some sounds such as f and s. We have been to a few speech therapy sessions, and there are probably more to come. A specialist will soon examine her palate, since the speech therapist suspects she has some kind of VPI (Velopharyngeal Inadequacy), which might or might not require surgery.

   The polydactyly / syndactyly, the microtia, the hemivertebra and the possible VPI, plus a slightly underdeveloped right thumb, plus a hardly noticeable hemifacial microsomia, are all part of the syndrome she has been diagnosed with: Goldenhar Syndrome. While it might seem like a scary diagnosis and long list of issues to deal with, we still consider ourselves lucky. She is definitely on the mild end of the scale of Goldenhar Syndrome, which can, in some cases, be a serious syndrome. She does have several issues, but they are all manageable. Goldenhar is a syndrome that does not affect the lifespan or intelligence of those affected. The likelihood that she will pass it on to her children is low.

   In everyday life, she is just like any other child, and no one really notices her differences. She has caught up on the gross motor skills, is developmentally on target, outgoing, generally charming and has a sweet disposition. She is also very healthy – kids with microtia tend to get more ear infections, but she never had a single one. She has had a fairly smooth transition and no major attachment issues. I’m not saying there have not been problems, but compared to the attachment issues I sometimes read about here on the forum, things have been really easy.

   Something that has really worked in our favor is that we live within a 30 minute walk from a hospital that has almost all the specialists we need. This is a factor to consider when adopting a child with multiple needs. We do have a lot of doctor’s appointments, and if we had had to travel far for each appointment, things would definitely have been much more difficult.

   A few things I have learned: 1. If a child has a limb difference, there is a risk that there is something wrong with the spine as well. 2. If a child has more than one deformity, there is a great risk that there is a syndrome. 3. Syndromes are not always scary worst-case scenarios.

   If you want to get in touch with me, I have the same username on the forum.

9. zgirl1 Says:
   March 16th, 2011 at 2:09 pm

   We adopted DS at 17.5 months of age last April. One of his needs was bilateral club feet. He also did not walk or stand yet, but we weren’t too worried about this. In addition to the club feet, he had a VSD, which required open heart surgery when he was 9 months old. We figured that the combo of factors led to his gross motor delays. Plus, we saw a video of him crawling like a pro, so things seemed okay.

   Before we left for China, we met with a Ponsetti trained ortho surgeon near us. He said that the expected course of treatment would be casting, followed by a tenotomy and braces. He had no problem casting an “older” child and was very knowledgeable about the casting of older kids, and as a surgeon, he thought surgery should be a last resort for club feet. He did mention that a small percentage of club foot cases were considered complex and would require surgery. Even though he said, based on the photos we received, that DS’s feet looked severe, casting would probably be the likeliest next step.

   We found out right before we left for China that DS was being casted in China. When we met him, he had just wrapped up 13 weeks of casting–which is a a lot of casts. Evidently, his feet were difficult to treat, hence all the casts. And even with the casting, his ankles were wonky and his feet were pulled in and to the side at a weird angle (the front of his feet were very straight, though–the casting worked on them).

   We got home and to make a long story short, the doctor suspected neurological involvement, so he delayed casting until we could do further testing. It turned out that DS has peroneal nerve damage in both legs, as well as a tethered or deformed spinal cord. This all meant that DS was one of the 5% of club foot cases that would need surgery. (Even the Ponsetti certified non-surgical orthopedist we consulted with agreed that surgery would be necessary).

   He had a relatively minor posterior release surgery and a tenotomy, followed by six weeks of casts. He feet looked great afterwards–his feet were flat on the ground and he had ankle mobility again. He now wears splints to bed and ankle braces during the day. He’s also in PT twice a week learning how to walk and stand. Even though the “problem” area is his feet and lower legs (weakness from the peroneal nerve damage), his glutes, core, quads, and hamstrings were all weak from never walking or standing. Plus, he did not know how to bear weight on his feet/legs. So he will require PT for a long time, and he is currently learning how to use a walker. Because of the nerve damage, his lower legs will always be weak and he will likely never be able to flex his ankle voluntarily (only manually). The PT thinks that he’ll be walking on his own (with ankle braces) by the time that he’s 4 or 5 (He’s 28 months now).

   So our son’s case was not what we expected, even though we knew a complex case was a possibility. Despite the extra complications, we would consider adopting another child with club feet again.

10. Mamman Says:
    March 16th, 2011 at 3:27 pm

    I have two sons with LD. They both have one hand that is underdeveloped. One has no fingers on his hand, the other one has one finger but the arm is shorter than normal and grows a little bent. Basically, both my boys’ limb differences are a non issue. The biggest concern is the psychological effects of looking different, something they will deal with on different levels while they grow up. To some it’s a biggy, to some it’s nothing. It all depends on the personality. They don’t use a prosthesis, that is not very common if there is as much of the hands present. These kinds of limb differences rarely are connected to any additional problems or diagnoses.

11. amazeingteacher Says:
    March 16th, 2011 at 4:47 pm

    My daughter was adopted in May of 2010 at 18 months old. She has/had a finger/toe deformity. On her right hand she is missing 3 fingers (she has her thumb and pointer) and her left had has all fingers, but the ring finger is “short” and has no fingernail. She has a bit of a short “stump” for her big toe on one foot with a larger second toe. And her other foot has a short big toe and second toe. She is missing toenails on some toes and has had some toenails removed due to them growing sideways and very thick.

    Her special need was/is a minor one and one that doesn’t impede her day to day life at all. She does have braces to wear on her feet each day that is supposed to correct her walk to make her feet straighten over time (they tend to turn inward). She had one surgery on both feet and one had when we returned from china just to separate the fingers and toes that she did have (some were fused). She did amazingly well from that and hasn’t looked back since!

    When she started daycare I began to see the signs of what will be hard in the future with kids teasing her and not understanding. She is too young now to realize, but for example one time during music class a boy didn’t wan’t to hold her hand because he said it was “broken”. Just an honest observations from another toddler, he didn’t mean it to be rude and Molly surely didn’t even realize what was going on. But it crushed me just a bit to know she will be facing even more of that kind of criticism as she ages.

    Amazingly she has enough spunk and independence to easily stand up for herself as she gets older. And I’m trying to foster than independence (as hard as it is) because I know it will come in handy one day. I spoke with an adult who also has grown up with a similar, but more severe, hand/finger deformity and she said her parents always told her that it is her responsibility to make people comfortable with her hands as she goes through life. I thought that was a really smart thing to do and say to a young child and when she gets older I will share that with her if I feel she needs to hear it.

    Besides that she is healthy, growing, and thriving at home. She is a true blessing and I never even look at her hands or feet as a special need anymore. She’s just my daughter.

12. Courtney Says:
    March 16th, 2011 at 5:27 pm

    We just returned home with our Joshua (2 yrs), who has a very minor limb difference. He is missing all the fingers on his left hand, and he is missing 3 fingers on his right hand. It is a complete non issue!!!! He’s just missing them. That’s it. He is 100% healthy and it doesn’t affect his daily life AT ALL. Today we walked into the kitchen and found that he had crawled up into his high chair and buckled himself in, all with his one hand! He also loves to draw. Joshua is amazing. Really nothing medically that can be done for him, so we don’t have to deal with doctors/surgeries, etc… He is just the way he is, and we love him to death!!! Very very easy special need to deal with.

    MCK (misscourtneyk)

13. inaboutayear Says:
    March 16th, 2011 at 6:22 pm

    Ohhhh, I finally managed to login to the blog.
    Our 5 year old, adopted at age 2, is missing most of his right arm. Although we don’t say it that way, we say he has a little right arm that is about 3 inches long. We had one unexpected surgery for bone overgrowth (his little arm bone grew through the end of his little arm) after we were home about 5 months. We had a number of bad doctors, but we ending up finding a wonderful surgeon, and we changed insurance to follow that surgeon when he left Shriners. I belong to a great listserve, so I can rely on other parents and individuals with limb differences for all our questions.

    Our son’s SN is a non-issue for us, aside for having to keep an eye out for bone overgrowth until he is done growing. He will likely need a surgery every 3-4 years to trim back his bone. I am so thrilled that I didn’t know about the surgeries when we chose to adopt him. We both work full time, and purposely chose to be open to SNs that did not require surgeries.

    DS is the most active, fun little boy in the world. He excels at karate and soccer and math and at making friends. He has had no delays. We had a prosthetic made last fall because he was asking for one, and he has received OT one a week for about 3 months to help him use it. But he is so functional that he never chooses to wear it. The only issue has been other people. We have had a few obnoxious comments from adults and children. At the other extreme we’ve had to counter many a comment along the lines of: I saw this amazing robotic hand on 60 minutes, you should get one of those.

    To summarize: I don’t know how we got so lucky to be the parents of our amazing little boy.

14. MommaP Says:
    March 16th, 2011 at 7:21 pm

    We have three children who were born with bone issues.

    DD, now 7, was born with “Pectus Excavatum” or “funnel chest” as it is commonly known. She has a “dip” at the center of her chest. In severe cases it can cause impingement of the underlying organs. But her case is, as we could tell clearly from the China photos, is not severe. There is nothing about this special need that has created concern of limited her in any way. She had a great foster home situation. The greater special need for us is that she is highly gifted, way, way, way smarter than her Dad and I…this is the area, all kidding aside, is of the most concern…how to manage a kid with an astronomical IQ keeps me awake at night!

    DS#1, now 3, has a LD. On his right hand, all four fingers are missing and his thumb remains. I was amazed when during the first day we had him, he used his thumb on the affected hand to open a bottle of fruit juice (one of those small tops that I sometimes struggle to get the right grip to open.) This SN for him as far as we can see now in the preschool where he is enrolled, does not limit him in anyway. He has several adaptations that he makes throughout the day, but they are automatic, and he has yet to ask me for help with anything that he cannot do because of the hand. Our biggest concerns are for his insecurity of being different. He is a really sensitive kid. Hard to tell if that is due to his awareness of his difference…or if he is just wired that way regardless. If he makes a mistake (on something totally unrelated to his hand) he gets really embarrassed and teary. I can only imagine how difficult it will be sometimes for him when mean kids or people, for that matter, react negatively to his hand. For now we just love him, encourage him, and let him loose to be everything he can be…and we’ll be there to help him during the painful times. He was in an awesome foster home, spoiled rotten, and grieved the hardest of all of our children. That nearly broke my heart. We speak Chinese and for us to fully understand his thoughts as he verbalized them during that first month…”why won’t you let me go home?”…haunting.

    DS#2, also 3, has a diagnosis of arthogryposis. This is not a diagnosis given by China. His paper work said “varus deformity in both hands and feet.” His feet are moderately clubbed (the right more than the left), and his hands at birth were, according to his file, nearly “sealed closed.” He was said to have had therapy on the hands to open them, but he still has contractures (consistent with arthogryposis) in both hands (meaning the digits cannot straighten all the way) and his hands are “swayed” a bit, or turned slightly “outward.” He generally cannot fully open his hands.

    His feet will be corrected this summer at Shriners. We have had to delay the repair for several reasons. The major element with this guy has been his severe institutionalization and attachment issues. He had two phrases he could speak when he first came home with confidence “Bu hao” and “Bu Yao”, meaning “no good”, and “don’t want.” He had rage issues, wasn’t potty trained, could barely walk (due to lack of muscle tone, NOT due to his clubfoot issue) and had literally NO interpersonal skills. Wouldn’t make eye contact, wouldn’t smile, generally never felt safe…and was angry with the world, all the time.

    This past year we have seen miraculous healing of his heart and his mind. His bonding has come so far and he is like a flower that is opening up to reveal its beauty within.

    His diagnosis of arthorgryposis is not degenerative. We have to make a decision as to whether or not we will have surgery on his hands to straighten the fingers fully. He has no limitations on the use of his fingers/hands. We have a good friend with this diagnosis, her hands have more contractures than our DS’s (her fingers are all flexed permanently in a claw-like fashion) and she is a hairstylist by trade and an accomplished pianist by hobby. She has encouraged us to consider not having the surgery that may have more risks than benefits for his hands.

    In all these cases, undoubtedly, we would consider these SNs again. Even for DS#2, his SNs are nothing compared to the ill-effects of his institutionalization. Those factors were truly debilitating. But we are so, so in love, and it takes our breath away to consider being without any of our precious children!

    Should anyone have any questions I can be reached at: mandarinmadelyn (@) hotmail dot (.) com

15. adempster Says:
    March 16th, 2011 at 7:53 pm

    We adopted our daughter in 2005 when she was 27 months old. She is missing her left hand, her arm ends just before the wrist. We did get a myo electric arm for her when she was 5, and though she caught on very quickly how to use it, she did not like it! It was heavy and awkward for her to use. She prefers to be natural, and uses her little arm for touching things, so she does not like it covered up. She can do anything she puts her mind to, including learning to tie her shoes, and she is working on learning to braid hair, not easy to do with one hand. Her friends are facinated by her little arm, and she is quite confident to show people when they ask her about it. Like so many others have said, it’s hard to consider this a SN, and we don’t even notice it!

16. JAG4 Says:
    March 16th, 2011 at 8:23 pm

    Our daughter, adopted at 14.5 months last August, was diagnosed with “skull dysplasia.” One translation even stated that she was “missing skull.” All of her development was listed as normal, and her CT was said to show only decreased ossification. Our ped and specialists couldn’t make heads or tails of it, so we took the leap of faith and locked her file (after missing out on it after the first try). With her being so young and so healthy, I can’t believe we were the first to say yes. I guess the words “missing skull” must have scared a lot of people away.

    We were lucky that a missions group visited her orphanage before we traveled, and were able to get “updates” from English speakers. The ladies that visited her said it just seemed like a very large fontanelle. When we got home with her and saw the neurosurgeon for a CT, we found that she is actually missing part of a bone in the skull. She will most likely get a prosthetic placed at age 4. That gives us time to see how much of it may grow in itself. The prosthetic will be a one-time, lifelong fix. Her development is normal, maybe even a little advanced in my very biased opinion! ;)

    The interesting thing about our story is that we were not even considering special needs at the time. Our agency just called us up out of the blue and sent us her file for consideration. It is truly a miracle that she has joined our family. She’s a spunky little sister to 3 older brothers and an older sister, and she fits our family perfectly!

17. mumarlene Says:
    March 16th, 2011 at 8:31 pm

    It has been a very long time since I posted on this site…we were logged in March 17, 2006 and received our referral June 2009 and our beautiful Mei Mei Sept 1, 2009. She absolutley has no delays of any sort or physical limitations. For the first 6 months she would cry when we left the room…we adhered to every thing they say about attachment..eg..DO NOT let anyone else hold her..comfort,….except us…and we stuck to that. As an RN with a Masters degree in Psychology..I understood the theory…and Knew what to expect…and never gave up and was consistent in our approach/care with our daughter…It was exhaustinmg..but neccessary….

    First, I commend anyone who committs fior a Special needs child….as prepared as I/we were for our daughter…her needs cannot even come close to a special needs child….I guess my point is …that prospective parents need to REALLY take an honest reflection as to what they can take on in order to parent. Recently, I know of two couples who switched mid stream to special needs in order to “jump the cue”…as they sited the “special needs not as intensive in China versus our country”…well…I would beg to differ…as speical needs knows no geographical boundary. The surgical intervention is often the least “worry” for these children..it will be the years of trauma and grief…that takes +++ tiem and therapy to lessen/resolve..or may never happen.

    Please do not make this decision ..thinking a couple of surgeries will “fix” a child…into a none special needs child..

    Best of Luck to everyone!!

18. Mom to 5 Says:
    March 16th, 2011 at 9:04 pm

    We brought our 13 month old dd home almost 2 years ago. She has a very minor need on her right of 4 short fingers with a normal thumb. I can’t believe she was on the waiting child list. She is a true blessing and her hand is a non-issue. She can pick up the smallest objects with her right hand. We’ve had x-rays and 3 of her fingers have one bone and her middle finger has 2 bones vs. the 3 normal. We had 3 surgeries with our bio son with his right club foot. We were matched within 2 months of switching programs.

19. dreamingof3 Says:
    March 16th, 2011 at 10:43 pm

    We adopted our dd at 29 months old. She was born with severe bilateral club feet (and mild arthrogryposis). She was cast in China and wore braces after the casting. We think she was about three months when she first began the casting.

    She was walking when we met her, but not steadily. She could not really walk up or down any slight incline, steps, etc. I think that she really hadn’t practiced much. It was obvious, though, that she was very well cared for. She lived in a loving foster home.

    We consulted with several doctors when we returned home. They all felt that her correction was very well done (although her flexibility was limited) and that we should continue with night bracing and continue with check-ups twice a year.

    Jump ahead about a year and a half… she started taking her night braces off (even with triple knots) and it only took about six months for her to regress. We went to see three specialists- two with Ponsetti training – and we got three different opinions. It was a nightmare. We live in a rural area and had to drive four hours out of state each way to see anyone remotely experienced with treating cf for older kids. Two suggested surgery. I emailed photos and talked to btdt parents. We researched for months and watched her continue to regress.

    I wanted to share our story, because we are one of the very few cf families that I know of that did go with surgery. The doctor we worked with trained with Ponsetti and was very clear why he felt she was in that 5% that would benefit. She had tendon transfers and lengthening of the Achilles. She also had to go through about three months of casting pre- and post surgery. They were full leg casts, which can be tough for a near five year old. She really didn’t move around much, but learned how to use a wheel chair pretty well when home.

    It was an extremely difficult decision for us to go with the surgery. I will never know if the surgery was absolutely necessary and maybe she could have issues later in life. But, her feet are now flat on the floor and she walks beautifully (although her ankles are still stiff). She runs and hops around and never complains of pain. Her doctor made AFOs (orthopedic leg/ankle braces) for her to wear after the casts came off and he has given her the okay not to wear anything now, but we still have her wear them –just in case.

    Our DD is the most well-adjusted, smart and funny little girl. I love her beyond belief! She plays well with her siblings and bonded with us quite easily. If I could (and I may – shh, don’t tell my husband) I would definitely adopt a child with club foot again. The weekly traveling was hard on us mostly because of where we live and the other children, but I would do it again in a heartbeat.

20. dreamingof3 Says:
    March 16th, 2011 at 10:54 pm

    Thanks mumarlene. I agree that switching to SN should not be considered lightly. Adding ANY child to a family is hard work, emotionally, physically and financially. We need to think about what is best for the child – always.

21. tearoses1 Says:
    March 17th, 2011 at 1:03 am

    rumor alert:

    forgive me for getting a bit off point here, but big agency says CCAA “is beginning to organize children’s paperwork to match families.” new verbiage. this is often the two-week alert to matches.

22. waitingchild Says:
    March 17th, 2011 at 1:24 am

    We traveled to bring home our amazing son 6 months ago. He has AMC-arthrogyposis, which rendered him wheelchair dependent. We’ve had many surprises in this adoption journey–it has been a long hard road.

    We knew about “Older Brother’s” arthrogryposis. He was 9, according to paperwork. When we got to China we learned he was Hep B positive, and he looked older. Our doctor believes he’s 12. He was misdiagnosed with cerebral palsy, and he was put in an orphanage for children with severe mental delays and left untreated until he was 7. No wheelchair, no assistive devices, no therapy-he just rolled on the ground to get around. He was transferred at 7 to a medical foster home and given an accurate diagnosis and attended school for several years.

    When we brought him home, we contacted Shriners. The Shriners Hospitals in Philadelphia and Houston are specialty centers for arthrogryposis. Since Thanksgiving 2010, we’ve traveled from Nashville, TN, to Philly every 2 weeks for Ponseti method serial casting. 5 of those trips I drove, because we couldn’t afford airfare. It has exhausted our finances.

    The tradeoff is this-our son, whose feet were clubbed very severely, who lacked the strength to feed himself just 4 years ago, will actually be able to walk using a walker and AFO’s because he’s finally gotten appropriate treatment.

    If you’re looking at a child with AMC, you need to understand that AMC is a spectrum diagnosis. There are lots of varying degrees–some kids have clubbed feet, some have no biceps/triceps, some have involvement of the spine or jaw. A great resource is the “Arthrogryposis Text Atlas.” It’s out of print, but you can download it online. Another great resource is AMC support, a group out of Saylorsville, KY. Shriners Hospital is great-I cannot stress that enough.

    There’s a lot more physical therapy than I expected. It has been harder to attach, because in addition to being older, our son has had to endure very painful casting. In December alone, we spent 20 out of 31 days in some doctor’s office or in transit to Philly.

    I had quite a different plan in mind when we came home. I had public school lined up for him and a job for me. Our younger son, adopted 2 years ago, is 5 and was going to be in Kindergarten. All that changed. Our 5-year-old suffered huge setbacks developmentally and in attachment, and we had to begin occupational therapy and withdraw him from Kindergarten. The treatment at Shriners meant OB missed a lot of school, so we had to renegotiate with the school system. My husband has not been able to help with travel or therapy, because he is working day and night to make ends meet. Both of our parents live 6 hours away, so we have had to do a lot on our own. Our Sunday School class provides a lot of support in the form of frozen meals.

    It was a VERY hard choice to make-whether to let him bond with us and settle in to our family for months before seeking orthopedic treatment (and I don’t mean in hopes of walking-AMC joint contractures tend to worsen over time if left untreated) or to start treatment right away when we learned he was 3 years older than we’d thought. Once we started treatment, we were surprised to learn there was a chance he could walk with assistive devices. We are thrilled, but I would discourage parents to go into adoption looking for a miracle cure. We even downplayed our excitement to him about the chance to walk initially, because we didn’t want him to associate that with approval-as though we’d love him more if he could walk.

    There is a lot of stigma in China against AMC kids. He’s told us many buses refused to let him on if his ayi had to take him to the doctor, and it was hard for his foster home to find a school for him-they had to raise funds to get a tutor for him initially because no school would accept such a “deformed” child. Many Chinese people said ugly things to him in Chinese in our presence, and several openly asked why we would want a “deformed” child. (I use “deformed” because it is the direct translation of the Mandarin word they used.)

    We have a long road ahead. Next month, I have to take both sons up to Philly and live there 3 weeks, because Older Brother has been accepted into an intensive PT program at Shriners that will help him learn to walk. He has a lot of attachment/emotional stuff that he hasn’t even had a chance to sort through. But I would not change our family for anything. I am so proud of our sons, and I think Older Brother is the kindest, bravest boy I have ever known, and it is an honor to be his Mama. PS-He’s a math genius-with roughly 4 years of school, he’s working on a 6th grade math level.

23. RayinVA Says:
    March 17th, 2011 at 6:39 am

    We adopted Leah in May 2010 when she was 22 months old. She had bilateral club feet which were not corrected at all in China. At first, she could “walk” on the outsides of her feet, which were very calloused. We were referred to a pediatric orthopedist at Children’s Hospital in DC who specializes in club feet. He recommended 6 weeks of Ponseti casting (above-the-knee, replaced every week) followed by a tenotomy on both feet to lengthen the Achilles. The surgery was recommended because of her age and we never questioned it. She came through surgery fine (a two hour procedure) and had to wear heavy above-the-knee casts for four weeks. Once out of those casts, she wore ankle-foot orthotics (AFOs) 23 hours a day for 3 months. About 2 ½ months after her surgery, and about 1 ½ months into her AFOs, she started taking her first real steps on the bottoms of her feet. After 3 months with AFOs, her doctor said she could go to part time use, meaning she only wears them at night now.

    Leah is 32 months now and walks quite well. Lately, she is almost running which is quite scary. She cried a lot at night when she first got the AFOs, because they keep her feet a set distance apart and it was quite awkward at first. But now, she asks for her “boots” when she goes to bed. It’s just part of the routine. She does have skinny calves, which is common for cf cases, and her feet are quite small for her age. Still, she is just the happiest kid you could ever meet.

24. cksmama Says:
    March 18th, 2011 at 10:45 am

    We adopted our daughter last summer at 2 years of age. She is missing 3 fingers on one hand and had a clubfoot. Her foot was successfully corrected using the Ponseti Method by Dr. Lund in the Dallas/Ft. Worth area last summer. Dr. Lund and his staff are absolutely wonderful and we will be forever indebted to him for his expertise. He is seeing wonderful correction using the Ponseti Method with older children. Our daughter required 2 castings and will wear a brace at night until she is 4. She was walking within 4 months of the castings and is now running, jumping, and skipping faster than we can keep up with her. She is an absolute joy. We echo chrisnstephani with regards to surgery. Our pre-travel consultation with a pediatric orthopedist proved to be inaccurate. He advised that multiple surgeries were the only way to achieve an “acceptable correction” and that she would never walk normally due to her age/late intervention. Thankfully, we took her to a Ponseti trained doctor for a 2nd opinion. We are finding that fingers are highly overrated too. She has great use of her hand and can pick up anything. We have consulted with a hand surgeon and mapped out a few procedures to give her additional functionality. None of her “unique” qualities stand in her way. She is indeed a blessing to our family.

25. inHistime Says:
    March 18th, 2011 at 3:03 pm

    Our child, adopted 6 months ago the age of 22 months, has been a pure joy. She is missing the lower part of her left arm from the elbow, her right arm is short (missing the radius and ulna) with a small hand and only 2 fingers (that do not come together), she is also missing her left fibula bone and one toe on the same foot. SO…3 limb differences altogether. She amazed us at what she was already able to do. Thankfully there are no other physical or mental dissabilities with her. She is now able to walk with a slight limp. Shriners said that we could amputate or do the leg lengthening. For now, leg lengthening looks like the best possibility for us. But that will be much later on. I would do it all over again. The hard part will be when she gets older and we deal with the looks and attitudes of others. Right now, everyone only notices how cute she is.

26. china mom 2b Says:
    March 19th, 2011 at 10:44 pm

    We adopted DD at 22 months. Her original diagnosis was dislocated left hip. Two days before travel we were told she had thigh problems and would never walk.

    We were told she had never had solid food. What was evident to us was that she was severly malnurished. She had no hair, could sit with support, had never been on her tummy and had severly atrophied arms and legs.

    In China we fed her and worked with her physical development. Once home the Children’s Hospital did a full work up including neurology and orthopedics and came back with the diagnosis of severe malnutrician and neglect.

    DD began to walk after 6 weeks at home. She has been home 2.5 years and physically is normal. She is a tallented gymnist and enjoys physical activity. She is age appropriate academically and receive speech therapy. She talks easily at home but says she doesn’t like the speach therapists so she doesn’t talk with them. She is spoiled and strong willed!

    We have two adult sons and thought we were well prepared for DD. The challenges of a SN child are greater than we expected. While were are blessed that she does not have the physical challenges we anticipated, we have been through a lot as a family from sleep and diet issues to severe attachement problems. The last 2.5 years have been the most difficult of our married life but most certainly the most rewarding. Our precious DD brings us so much joy!

    When researching a SN you really must be prepared for almost anything.

27. Lily Dad Says:
    March 21st, 2011 at 3:47 pm

    My daughter was adopted November 2008 at 11 months of age.

    She was diagnosed as human growth hormone deficient in July of 2010. She has only grown about 3 inches in 28 months. After applying for HGH treatments with my insurance, being turned down, appealing and being turned down, her file was reviewed by an impartial medical expert and treatment was approved.

    We started the shots about a month ago and are still trying to get the process perfected. She asks if she is getting her medicine as soon as we pick her and we have started giving the injection as soon as she asks about it. She gives no sign that the shot hurts. I have stuck myself with the needle and you really can’t feel it.

    She has not grown yet, which is to be expected we are trying to get her HGH to a “normal” range which will allow her to grow. She is happy, healthy, lots of energy, takes Chinese dance etc..

    She also has strabismus with her left eye. We had surgery in March 2010 to correct. She will need to have another surgery when she gets older to completely fix. The first surgery was to get it close to right but allow for variation as she grows and it helped alot.

28. SDmom Says:
    March 27th, 2011 at 9:53 pm

    We brought our daughter home in August 2008, she was 19 months old. The fingers on her left hand are shorter than her right and she had syndactyl of the 4th & 5th fingers (they were fused together). Someone in China had tried to separate them shortly after she was found, but they are still connected about 1/4 of the way. China doesn’t usually do cosmetic surgeries, so I wonder if they thought they could “fix” her hand and put her on the healthy child list. I’ll never know for sure but that’s my theory – because she was otherwise perfectly healthy.

    We took her to Mayo Clinic in MN to be evaluated and the doctor said she has arrested distal development – a congenital disorder where the fingers just don’t grow at a normal rate. He x-rayed her hand and noted her growth plates – he assumes the fingers will grow a little more but he’s not sure how much. He said that there are procedures we can do to help her fingers appear longer, but he wants to wait until the fingers have stopped growing. He also had a plastic surgeon look at her hand to see if the 4th and 5th fingers could be further separated.

    She’s now 4 and she doesn’t have many issues with her hand. She can do zippers and buttons and even dangle from the monkey bars a bit. She’s taking violin lessons and holds the bow in that hand (we had them string the violin “backwards” so she could place it on her right shoulder).

    I’ve watched her respond to kids who ask “what happened?” and she doesn’t say much, just giggles and pulls her hand away. When they ask me I say something along the lines of, “Nothing happened, she was just born with her hand that way, just like some people are born with birthmarks.” I’m trying to give her the tools to respond in a matter of fact, positive way because I know she will be confronted with the question her whole life.

    The hand makes my heart ache for a number of reasons. The biggest is that I am pretty sure her hand was the reason she was given up…so therefore, it’s the reason I was blessed to become her mother…and for that, I am eternally grateful. I just wish I could shield her from every tough comment or question that I know she’ll hear in the years to come. I know that in the big picture of life, it’s a little problem, but it will be hers to bear. It will also probably be something she thinks about a lot when she begins to question why she was given up.

    Thank you, Rumor Queen, for being such a fabulous mom to your girls and for allowing people like me an outlet in a forum like this. You were one of my only comforts during the long, ugly wait and you provide even more support now that we’re home with her.

    Oh – and for those who might be waiting and in pain – hang in there – it is ABSOLUTELY worth it. We feel like the luckiest parents in the world.

29. jessica54 Says:
    March 29th, 2011 at 3:10 pm

    We finally got our baby girl, Hope, this past January. We switched to special needs in China last August. In September, we got our referral. They told us she was polydactyl in both hands and one foot. After consulting with a couple of pediatricians, we accepted. You have no idea how happy we are, every day, that we’ve made this decision. What a blessing she is! We are lucky to have one of the best orthopedic pediatrician hospitals in the country nearby. Her foot and one hand have already been corrected, and she goes in for her other hand within a month. She won’t even remember any of this. I think it’s much harder for us than it is for her. ;)