special need highlight: adopting a child with epilepsy

April 20, 2014 Central Nervous System, epilepsy, Family Stories 0 Comments

When my husband and I first decided we were going to adopt we were given the long check list of the needs we thought we could handle. I thought this was a daunting task as I knew there would be children we would essentially saying no to a child by not checking off that box, but I knew God had a bigger plan and we looked into all the needs we thought we could and could not handle.

One need I thought hard about was Epilepsy. The thought of having to watch helplessly as a parent while my child was having a seizure scared me to death! I could not wrap my head around how parents did not hover every move their child made in fear that now would be the moment their child had a seizure. But after reading and talking to a few friends who had kids with seizures, I learned how medicine and even time, can sometimes allow children to grow out of them, and could mean a completely normal life for our child. And besides, we checked so many boxes, what were the odds!

In October of 2012, we were sent our first file for a little 2 year old girl with…you guessed it, Epilepsy. We prayed and talked and prayed some more, and in the end, we saw no reason to not say yes. She was our girl!

referal picture of Nina

Later we decided to add a second child to our adoption and got the file for a little two year old boy (Isac) with Cerebral Palsy. This need was even scarier to me than the Epilepsy, but I knew Our God was bigger than our fear and he needed a home, our home.

png;base6412064720eb9a7cbc

Nina and Isac have been home since November 25th. Our Isac was running and dancing and playing, if he had CP, it didn’t seem to be affecting him at all. The day we got Nina, however, she was having seizures. She still is to this day. We learned she actually has Tuberous Sclerosis Complex, which is when your body has tumors on the major organs. The tumors on her brain are causing the seizures to happen. The main goal for us and her doctors is to be at a place where she is no longer having seizures. We are working hard at changing up her medicine, until we are not seeing them any more.

Upon getting Isac home we learned he does not have Cerebral Palsy. He is a healthy, happy, dancing little boy.

IMG_0012

Our Nina is a tough girl. Her seizures do make her tired and her change of meds can sometimes make her irritable. We still have a long road ahead of us to get her meds balanced out, but each and every step is another day to watching our sweet girl live a life with love and the freedom a family brings a child. Both our children are totally and completely worth every step of faith we have made!

nina

Just like other moms have said on this blog, when you see any child’s medical file, whether it be clubfoot or cancer, any and all special needs could be in a wide range from one doctors appointment to a lifetime of care. Epilepsy can range for a child who has one or two a week and becomes free of them on meds or ends up outgrowing them, to needing medicine their entire life and having them affect their brain. You really never know until you get them home. Just like when you give birth to your biological children, we have no control over the special need they may or may not have, as we experienced when we brought Isac home and he has no special needs at all.

1472939_10151975073588444_1704349082_n

~Guest post by Sara

Waiting Children

Gina, born in March of 2012 has been in care since birth. This pretty toddler is responsive to caregivers and rewards them with a big smile when they talk to her. Her report describes a child with very significant delays and a diagnosis of a neurological condition who is making steady progress. She turns over to play with toys on the mat and grasp them. Although her grip isn’t strong, her focus and desire to hold the toys or a caregiver’s hand is clear, and she has a robust chuckle when she’s amused. She’s said to be a calm child who entertains herself without complaint and rarely cries. She does have a temper though, especially when the food is late! There is a $4000 Promise Child Grant available for families who qualify to assist with this adoption. Contact WACAP for more information.

Gina

Huo was born in June 2004. He is very sweet and friendly. His left side is weaker than his right side. He uses his right hand much more than his left hand. He is diagnosed with CP and Epilepsy, though he rarely has seizures. He can recognize when a seizure may happen. He will sit down and tell his caregiver that he is not feeling well. Usually, it goes away in a few seconds. He is not taking any …medicine because his doctor does not think it necessary. He is a very well-behaved child. He has good manners, frequently smiling. He is not afraid of strangers. He is very attached to his caregiver. He can communicate well. He speaks clearly and is very organized when he expresses opinions. He can write his name and a lot of other characters. He can read. He has large vocabulary. He is doing very well academically in school. He likes school very much. His favorite subjects are math, Chinese and music. He enjoys learning. He is a fast learner. When asked if he likes English, he said yes because he wants to go to US to find a mom and dad. He longs for a family. View a video here. Contact FTIA for more information.

1

Dean is six years old listed with Madison Adoption Associates via an orphanage partnership. Dean is diagnosed with epilepsy and developmental delay. Dean is active and restless. He likes helping the nurturer do things and has a strong imitating ability. He follows her to clean the floor and put the chopsticks on the table. His language development is not good, but he can express his thoughts. He likes playing with other kids. The nurturer tells him stories about having a dad and mom. He expressed his willingness to have his own dad and mom. If you are interested in learning more about Dean, you can fill out a free family information sheet.

Dean

Update: My Family has found me! Precious 2 year old Tanner is diagnosed with 1. viral encephalitis; 2. secondary epilepsy; 3. external hydrocephalus. * A family who adopted a child with external hydrocephalus says that external hydrocephalus is enlargement of the subarachnoid space and usually resolves on it’s own by a year to 18 months, so it’s considered a benign finding. Watch his sweet videos here and here. Passport: Adoptmaa. Tanner has an account on Reece’s Rainbow account that is just now getting started. Tanner is listed with Madison Adoption Associates via an orphanage partnership, contact them for more information.

Tanner

For more information on beginning the adoption process contact The Advocacy Team.



Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.