11 Responses to “Special Needs Discussion – Neurological issues and Brain Trauma issues”

1. TomKat Says:
   March 18th, 2011 at 8:56 am

   We adopted our daughter MM in June 2010. She was a little over 2 years old. We had waited 4 yrs on the NSN list and in March decided to go SN. We got her referral in late March. Her SN is tethered cord syndrome with a fatty mass at the base of her spine. She was with her family until she was 9 months old and then they left her outside a hospital. They said due to economic issues that they could no longer take care of her. She was taken in and operated on in Shanghai. After her surgery she went to the orphanage and then to a foster home and her referral was posted.

   When we received her referral, she had healed from the surgery and was walking with no problems. Her paperwork was pretty thorough and our doctor thought she would be a girl with a scar on her back. Our biggest concerns were with scoliosis and incontinence (caused by nerve damamge).

   When got home, she was seen by an orthopedist and had an MRI of her brain and spine. The orthopedist said her spine had healed “jumbled” which was stabilizing it, so he thought she was at low risk for scoliosis. He said he thought she might be small waisted,but that would be an issue with clothes. Over the year, her spine has actually straightened out some and she is walking so much better.

   The MRI did not show anything to be concerned about. Her brain looked good. We were told that 85% of kids with her diagnosis have a shunt to relieve fluid that runs from the brain down the spine. There was one small pocket of fluid on her spine that we are keeping an eye on, but they said it could have always been there. We also learned that she is not incontinent. We were able to potty train her with no problems.

   We are doing well and she has bonded with us. She was worth the wait.

2. 1chinawish Says:
   March 18th, 2011 at 9:50 am

   We adopted our daughter shortly after she turned 4. She is 5 1/2 now. She has a form of Cerebral Palsy called right side hemiplegia. At the time that we accepted her referral we knew that she had learned to walk late after some physical therapy and that her right side was weak (it was very unclear about whether her leg or arm were both affected or not) but her referral also said that she could walk up and down stairs and jump. I had no idea what to expect in terms of how much function she did or didn’t have on her right side…..

   She arrived to us as an active 4 year old, but quite weak with her right arm. She also couldn’t stand on her right leg alone without holding something to balance. Today, she has a slightly abnormal gait (she swings her right leg from her hip a little differently and she doesn’t place her heel fully on the ground). She also neglects her right hand. However, she CAN place her heel on the ground and with some concentration, she has some dexterity with her right hand. I would have to say that given what we were told, her level of neuro-muscular function is really best case scenario – I think the description provided in her file could very well have fit a child with less muscle function than she has- which would have been fine too!

   Lots of people are surprised when they find out she has hemiplegia (even her kindergarten gym teacher didn’t notice until I talked to him about how she was doing). She is so gregarious and outgoing that any differences in her gait when she is playing would be just considered by most observers as ‘running funny’ on purpose. And you might not notice how little she engages her right hand unless you really watch her for a few minutes. People we see regularly (at church or school, for example) are always commenting to me – “oh, your daughter is left handed” and never say anything about how she doesn’t even use her right hand. I am not sure if her gait issues will become more of an issue as she ages into a young woman instead of a ‘wild child’ little girl. But at that point, she may be willing to work harder on improving her gait. Right now she hates anything that is obviously ‘physical-therapy-ish’.

   In terms of managing her CP, I
   1. have to keep her in appropriately fitting shoes

   2. have to be aware that she is somewhat clumsy and will likely always have skinned knees or scraped up palms and a bump on the head. I am not an overly anxious mom, so I don’t stop her from running wild with her brothers if she wants to – BUT I keep the bandaids handy. She also takes a little longer to figure some things out, such as climbing monkey bars or riding tricycle because she needs more practice. But she has succeeded in all of it so far!

   3. had her evaluated by an occupational and physical therapist right after we got home. This was through the local county early intervention program. Both were amazed at how well she did with both her arm and her leg. She was very close to on target for all developmental milestones for her age. Thus, she was not eligible for any services. I was not happy with this because she does neglect her hand (just leaves it hang loose while she is playing and doesn’t use it). This also presented some challenges for dressing herself. I know that if we can encourage her to use her arm some, it would strengthen the neural connections and result in a positive feedback loop where she would use it even more. Thus, I took her to a second private physical therapist who said basically the same thing as the first and that the best thing for her was playing with her brothers. She agreed to work with her if I wanted but felt that she would make great progress even without therapy. So – she wrote us a therapy plan to do at home and gave me some ideas of games to play to help her and sent us on our way. I now see that the therapists were probably right. Our daughter has made huge strides in strength and agility since being with us. I think it all comes from play with two active older brothers.

   4. have appointments to see a pediatric orthopedic dr two times a year. He just measures her dexterity and muscle tension and will recommend a brace or intervention (surgery, botox, etc) if he thinks her muscles are getting too tight as she grows. There is some risk that growth will exacerbate her muscle tone issues but so far, so good (she has grown inches since she has been home)

   5. took her to a consult with a neurologist at the suggestion of the ped orthopedic dr who told me something I had never heard before and didn’t run across in my research. The ortho dr said that hemiplegia kids are at higher risk of developing seizures. The neuro dr confirmed that there is a SLIGHTLY increased risk but said don’t worry she looks healthy – come back if you ever notice anything – so I guess (hope) we are done with him :-)

   Bottom line, I feel like her special need of “CP” is almost a non-issue with her physical health. In terms of her self-esteem, she explains to me sometimes that her toes or her fingers “don’t work” and I agree with her and then that is as far as her questions have gone. She is healthy and may or may not have to use braces and / or have surgery – only time will tell. However, I expect either intervention to be temporary and to have a positive outcome for her. She is a resilient kid – so I hope any interventions that make her different will be dealt with well. We will do everything we can to help her in the self esteem realm.

   Many people who adopted children of her age (4-5) previously told me that dealing with issues surrounding being brought up in an orphanage were more difficult for their family than dealing with the special need. That is because you prepare yourself well for dealing with their needs that you know about. I am not sure I totally believed them, but the best advice I can give someone is to have a plan for dealing with OTHER adoption -related things. Don’t be afraid to seek professional help for emotional issues. My daughter is really doing GREAT! However, she is emotionally immature for a 5 year old and is very needy and somewhat insecure in her attachment to me. She is attached well to all of us but she still asks me EVERY day if I am SURE that I will come back after work. She tries really hard to make friends at school too- almost too hard – some of the other girls have shied away from her intensity. We are seeking therapy for her and maybe the rest of the family just to make sure that her insecurity doesn’t turn into a bigger problem with trust in her relationships. This is really quite minor in the grand scheme of our everyday life though. She is just an awesome kid. She started kindergarten this year had has made fabulous progress with language acquisition. She only turned 5 in July though -so she is one of the youngest in her class and we recently decided to repeat kindergarten. We want to give her time to fully catch up. I was told once to expect a child who lived in an orphanage for 4 years to be about 1 year behind in development. I found her to be that far behind in some areas (emotional maturity) but not in others. And she is almost caught up after 1 .5 years. Not bad I think to progress close to 2 or 2.5 years in a year and a half! But we are going to do kindergarten one more time just to give her the best start possible.

   I am happy to talk to others about CP or adopting 4 year olds. I am ‘hannaros’ in the forum.

3. vacdeb Says:
   March 18th, 2011 at 10:25 am

   We have been home two years with our daughter whose special need is spina bifida.
   She was abandoned a few days after her birth and found by an American woman in an orphanage in a room where they had stopped feeding her because they had no hope for her. They needed the food for the other kids. She was fostered by the American woman who raised the funds for her surgery to have the sac at the base of her spine removed. When we received her file DD was 20 months, it was vague and a lot was missing. We knew she could walk but was not yet potty trained. We were prepared that she may need physical therapy and be incontinent. She is now almost 4, potty trained and taking a ski lesson as I write this. Her doctors here believe her neurosurgeon in China did an amazing job. We will take her once a year for a follow up and watch her closely. Her spinal cord could get caught in scar tissue and she may need another surgery later. Our greatest challenges did not come from her special need but from adopting a VERY active toddler.

4. long4lia Says:
   March 18th, 2011 at 11:01 am

   Our daughter was adopted at 23mos. and she has been home now for three years. Our daughter has mild cerebral palsy also known as right sided hemiplegia. We did not know that was her dx. until we returned home and had a full evaluation here in the states. Her original dx. was arachnoid brain cyst, psychomotor developmental delay, and possible seizures. She went through a battery of testing when she first came home. From vision & hearing, to MRI brain scans, to Echo scan of her heart, X-rays and more. Most of the testing was to rule things out. She does have cystic pockets of fluid in her brain that is not causing any problems at this time.

   She had an EEG that came back normal and not a week later she had a full blown seizure in where she stopped breathing and I had to do CPR. The doctors warned me that she was at risk due to the abnormalities of her brain. Six months later she had another massive seizure and they repeated the EEG and found nothing. This time she was started on medication. She had one very small break through seizure last summer so we increased the medication but she has been seizure free since. I might add that she seems to only have them as she is starting to get sick.

   As far as what is affected. Her whole left side of her brain was completely damaged by stroke she had in her 1st moms womb. She really should not be able to do the things that she does. Her neurologist was amazed when he saw her. Her right side of her body is weaker. Her right arm has increased tone and we choose to use Botox therapy to relax her arm so it does not contract. Not everyone chooses to due this, it is a very personal decision. She wears a splint on her hand so her thumb does not stay tucked into a fist position. It helps maintain proper wrist position as well. We have done CIT (constraint induced therapy) in where you cast the good hand to make the child use the affected hand. She wears an AFO which is a leg brace for her right leg only. Lia walks great but swings her leg out. She does the tip toe run which makes it a bit more noticeably that she has a disability but you can not tell otherwise. If she was not wearing her braces you honestly could not tell she has CP.

   Lia’s main problem has been communication. The stroke damaged her speech center. She has what is called apraxia. We were told by our first neurosurgeon that Lia would never talk. Well it has been a very long road with a lot of speech therapy but she is doing wonderful. We have seen a huge explosion of vocabulary in the last couple six months.

   It is believed that she has Auditory Processing Disorder but they can not test her until she is 7yrs old. When she came to us she was not eating any solid food, could barely sit up, and had just started walking just weeks before. The doctors and her EI teachers thought she was Autistic but she showed them! She just needed time to adjust to her new world. Sensory issues, she has a ton! She can’t stand anything loud or an unusual sound, anything with her head (much better), and she loves to jump!

   Her CP is not an everyday issue. Yes she does have therapy and appointments but therapy is done in school. She is progressing everyday and is the happiest child in my home! I would defiantly do CP again if given the chance.

5. sweetiee Says:
   March 18th, 2011 at 1:05 pm

   Our son has Spina Bifida. He was adopted at age 2 and will be 3 soon. We only had our initial information and surgery records. He had a mass removed at age 11 months in China. Our concern mainly was if he would/could walk. He was and does well. He is a little pigeon toed, but I’ve been told it is normal for toddlers and we will look at it more when he is 3. Our other concern was continence. Since he is still young we are still working on bowel management. He doesn’t have great control but will sit and try. Our main thing we are trying to work on is to get the right amount of fiber daily so he doesn’t get blocked up nor too loose.
   Doctors here think he does not have meningocile (as on his referral) but lipomeningocile. They are all amazed at how well he is walking and how well he is doing. His MRI showed his spine fine and there may be some tethering on the spine but it was something we will watch and check at his yearly visit to the clinic.
   For kids with SB, you will be visiting a SB clinic yearly or every 6 months while they are young. Check to see your nearby ones and research them. Be prepared for annual MRI’s and kidney tests. Our medical bills last year were high due to the huge cost of his sedated MRI’s. But we just paid what we could monthly. Our son also is in the local Early intervention program for speech. Funny that he didn’t qualify for PT but did for speech. The EI program provides funding for travel for medical visits. We were reimbursed up to $250 a year for gas, motel, meals for our medical trips. This did help. We have also applied for Easter Seals that will start when he is 3. We were told they will help with therapy or medical bills up to a certain amount. I think our local office does $1000 a year. They recently called us and told us funding became available to send pull ups to him now even though he is not 3 yet. They mailed 6 large boxes of pull ups to the house. This was SO helpful. So for those that might be worried about medical costs, research these agencies in your area to see what is out there. We have our own insurance that we pay out the roof for, have paid taxes and donated to so much, we figure we will use the resources that are out there for our son.
   For the record, the transition with our son was so much easier than our daughter who was referred through the traditional NSN program. She seemed to have more “issues” with sensory processing disorder than our son, who has a documented medical diagnosis. We were not able to get any help with our daughters many OT visits that we ended up paying $55 a week for out of pocket b/c insurance refused to pay. But OT was WORTH it for her due to her issues. She did the whole Early Intevention too. So in the end, we have had more difficulty with her and unknown problems than our son. And our son was in foster care and knew more about how to be in a family. He likes to wipe up after himself and he likes to help me clean. He also LOVES his momma!

6. zgirl1 Says:
   March 18th, 2011 at 2:40 pm

   This is my third post in this series!

   When we locked DS’s file in January 2010, his medical issues were listed as bilateral club feet and a repaired VSD. He wasn’t walking or standing (nor was he walking or standing when we met him three months later a 17.5 months of age), but we weren’t too worried about that for various reasons.

   When we arrived home, we took him to the orthopedic surgeon to start the next steps in his club feet treatment (DS was casted for 13 weeks before we met him), and the doctor immediately suspected neurological involvement. DS had very low muscle tone in his lower legs, he couldn’t voluntarily move his toes or feet (part of this was the club foot itself), and the “look” of his club feet was suspicious. The doctor did say that it was possible that there wasn’t neurological involvement, that these symptoms could be a result of a severe case of club feet combined with institutional delays and developmental delays that resulted from his open heart surgery the previous summer. But he wanted DS to see a neurologist before he started casting or other treatment.

   So flash forward three months after two MRIs, an EMG, a urodynamics test/bladder ultrasound, and an EEG–DS was found to have peroneal nerve damage in both lower legs and either a deformed or tethered spinal cord (the MRIs were ambiguous). It’s not clear whether the nerve damage was congenital or whether it was a result of too tight casting that he had before we met him. Most likely, it’s congenital, and it’s connected to the severity of the club feet. Due to the unusual nature of the cord appearance, it’s also not clear whether the spinal cord issue is a factor in his nerve damage and club feet. But given the location of the tether/deformity, it’s likely related to them. And the lower leg weakness probably added another layer to his inability to walk and stand.

   Because of the neurological component, DS needed surgery on his feet to get them flat and to regain ankle mobility. Then he was casted. Now he is in PT learning to walk and stand. Because of the nerve damage in his lower legs, he will likely have permanent lower leg weakness and an inability to move his ankles voluntarily (he can only move them manually now). He will likely need lower leg/ankle braces for the rest of his life.

   The spinal cord situation is being monitored. So far, no surgical intervention is needed given that there is no evidence that there is a definitive tether. So we just have to watch. If DS seems to regress with regard to his lower legs/feet, develop new lower leg problems, and/or develop incontinence problems, then they may consider surgery. But the neurosurgeon thinks that DS won’t have any new symptoms and that whatever damage is done is done. So he thinks that there is only a slim chance that DS will need spinal surgery at some point.

   At this point–eleven months after we adopted DS, we’re focusing on his PT, which is helping him learn to walk and stand. He’s been going twice a week since mid October, and we do daily PT at home. He wears splints at night and lower leg braces during the day. He’s learning to use a walker, and he should be walking on his own (with braces) by the time that he’s 4 or 5. DS is 28 months old, so we have a ways to go.

   His medical situation was definitely more extensive than we thought it would be. It has also been more time consuming than we thought it would be. But we love DS and have no regrets. He’s awesome, and we can’t imagine life without him. We would also consider club feet if we were to adopt again.

7. monie Says:
   March 18th, 2011 at 8:42 pm

   Our son was adopted at 22 months. He has spina bifida, China referred to it as meningocele/myelomeningocele – the referral paperwork uses both words in different places. The neurosurgeon we see seems to think it was the meningocele form of spina bifida. His lesion was very low on his back, and he has a big scar right above his bottom.

   He has a tethered cord now but it is not causing problems, so our neurosurgeon wants to wait and watch. He might need surgery on it someday, or he might not. He does not have hydrocephalus – his head is bigger than normal (it is hard to get tee shirts on him sometimes, and some hats don’t fit well!) but the doctor doesn’t think he needs a shunt. We are still working on potty training (he is almost 3), but he does seem to be able to control his bladder and bowels. We’ve had some success on the potty chair, anyway. The Spina Bifida team at our local children’s hospital told us that he is “surprisingly normal” for a kid with spina bifida.

   We see the Spina bifida team every six months or so, and he takes a fiber gummy each morning. We avoid latex products because some kiddos with spina bifida are allergic to it, although our son hasn’t shown any sensitivity. He gets tired a little more easily than other kids his age when we walk a lot.

   I know that spina bifida sounds scary, and of course there are different levels of severity, but our son seems to have a very minor case. It has actually been pretty much a non issue in our daily life so far, a lot less so than our daughter’s cl/cp.

   My username on the forum is also Monie, please pm me if you have any questions.

8. portlandval Says:
   March 19th, 2011 at 12:51 am

   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.

   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. Upon reading about development in the first year of life, I saw that deprivation and trauma can cause the “mid-brain” or “amygdala” areas not to develop well. Amygdala is associated with ANGER. Put this together with surgery in China at nine months and not a lot of pain meds or comforting care and my belief is that her mid-brain development was STUNTED. How to deal with it…all my research pointed me in the direction of regressing her back to this younger period of time by holding her, feeding her from a high chair, feeding her with a bottle, (diapering her due to her continence issues), basically treating her as if she was a 6 or 9 month old. She seemed very, very angry and in pain when we met her. Over the months and years she has become very gentle most of the time. Her rages and dissociations are non existent now…she talks to me through her weeping which tells me SHE IS PRESENT!!

   These brain issues were PREverbal and I had to do NONverbal sessions to reach her. All physicial stuff like getting on the floor and playing, hugging, sensory play, etc. 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 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…the medical stuff seemed to be the EASY part. The hard part was her brain development, sensory health and speech.

9. daisy2 Says:
   March 20th, 2011 at 6:58 pm

   Our daughter was adopted at 16 months with a diagnosis of microcephaly. I had no idea what that was, I looked it up and everything I read scared me to death. Most children with micro have cerebral palsy, and that was the milder issue, but the medicals indicated that her development had been “normal” up to then, so we prayed for a misdiagnosis. Microcephaly means small head, small brain. The head grows because the brain grows, if your head does not grow normally it is because the brain is not growing normally. There could be a variety of reasons. When we went to get her, she seemed like a normal toddler, there were some delays as she did not walk without assistance but we knew it was just a matter of time.

   We came home July 11, 2008, she was 17 months, her appointment with the neurologist was 2 weeks later and he scheduled her MRI mid September. While we waited for the results she had a seizure. We received the results for the MRI while we were in the ICU as they tried to determine what caused it. They told us she had had a stroke probably during birth that had damaged the left side of her brain and she also had frontal lobe damage. They were shocked at all she was able to do. She looked, acted and was a normal child but her brain looked anything but. One neuro told me that had he not seen her before he saw the results of the MRI he would have thought he was reading the results of a vegetable. Oddly enough the EEG showed that she was not prone to seizures and this one was due to a fever caused by a urinary tract infection she probably had since China. I noticed early on that her right side seemed weaker than her left but the doctors ignored me until the results proved what I was saying. She started physical, occupational and speech therapy, she is now 4 years old and is a perfectly healthy child. Her speech is still slightly delayed but we also speak 2 languages at home. She no longer qualifies as delayed because her receptive language is above average and her expressive is not delayed enough, but we continue with therapy. She has no other symptoms, however, her head size is still below the 5th percentile so her diagnosis of micro remains. Although one neuro said it looked more to him like positional plagiocephaly rather than micro because the back of her head was very flat. (Not that much anymore).

   She has never had a seizure again so we are hopeful she will continue to grow normally. If I were to describe my daughter today it would be that she is beautiful, extremely active, funny, sweet and smart, and I feel so blessed that God chose me to be her mom.

10. EugenieV Says:
    March 22nd, 2011 at 11:34 am

    We adopt our boy from Russia, at 11 months old. We filed all our paper work for NSN, as I’m a pediatric nurse, and I was so terrified of all the conditions and complications possible in orphanage in the East country (lots of them have Hep.C, AIDS, alcool related syndrome).

    The first time we saw our precious one, we fall in love… and fear flooded me too. He couldn’t stand, or crawl, or sit, or even stay in sitting position when we put him. But, his smile was wide, he had stars in both eyes, he look at us directly in the eyes, he was so hungry to be hug, and to learn, and to listen. His eyes where so bright and so clever. We decided to just go for it. But I guessed something was wrong, even if I couldn’t tell what exactly at the time.

    After few weeks back home, he started to talk like crazy… He was catching up with langage at tremendous speed, but still, no motor progress. I saw like 3 pediatricians, to whom I share my fear: he was a premie, he suffered IUGR, his progress were very eneven… I feared CP. All three of them told me that I was too worried, to just let him time. I suffered of insomnia for more than 6 month after our return, thinking “If it’s not CP, WHAT is it? Is he intellectally delay? What have we done to our live, to our family? What will happen to us?”. I really worried sick, and that came in the way of bounding in the first month betwen me and my son. I just couldn’t help it. I was very difficult time, even if I loved him with all my heart and didn’t regret my decision.

    And finally time prove me right. We received the diplegia diagnosis when he was 20 months. I was so releived! I knew finally why my son didn’t stand, or walk. It wasn’t our fault, it wasn’t alcohol related, he wasn’t unintelligent! He just couldn’t, because his motor center have been affected by anoxia at birth. MRI shows up really common alteration for preemie, and our neurologist told us to stop worrying. Judging by his speech developpment, he was sure my precious baby didn’t had any intellectual delay. He talked to us about a friend in med school with CP, and reassure us a lot about the future. “Stick to rehab program, and beleive”, was his advice.

    The thing is, we never ask for SN child, but now, we really think it was our path. At 4 years old, our son walk with a walker, and have some issue with fine motricity. But, he talk better than a 5 years old (he’s been tested by ST for speech delay, as it is frequent in CP child, as a routine procedure by our rehab facility before beginning school). He is a boy who just like to laugh, like to be with other child (having a ton of friends), have no attachment issue, slept (and always did) like a dead man for 11 hours in a row, eat like an oger, love to cuddle… Just like to Live.

    Like every other kids I read about on this blog, he’s a great survivor. And I tought his disability help him survive. Back in his country, because he moved with so much difficulty, and he was so cute, nannies in orphanage often kept him little extras: a little more milk, a bigger snak, a exta hug when they had a little time, etc. So, it contribute to make him who he was.

    Taking care of a disabled child is not a walk in the park, though. You have to fight strongly for many things: equipement, rehab services, daycare. We spend more time in therapy than at home the first year. Some night, I was exhausted, frustrated, sad. You need emotionnal support, and a hand from family and friend to handle the million things you have to take care of. But it worth it…So much. :)

11. aust2china Says:
    March 30th, 2011 at 3:38 am

    Has anyone had experience with a child with epilepsy? Is it possible for a child to have an unusual EEG (hence diagnosis epilepsy) but not have seizures?