Ada's Story

Ada is our special little girl that joined our family in an unusual way.  So I'll start from where I got involved in Ada's life and go from there.  (I work with unwed mothers through an adoption agency.)  So here goes:

Ada was born to a teen-age unwed mother.  She was planning on placing Ada for
adoption until she was born.   Ada's birthmother had not received prenatal care until she was 71/2 months pregnant.  At that time the doctors did a sonogram and found out that Ada had severe hydrocephalus.   The birthmother carried Ada to full term. Ada's birthmother had decided to keep her and not place her for adoption, since her condition was so bad.  The doctors told her birthmom she would only live a short while (6-8 months). At birth Ada had a very small head (microcephalic).  A few days after birth,
she was diagnosed with hydranencephaly and encephamelasia. Hydranencephaly
means she was born with very little brain.  She has her brain stem and a little of her cerebellum.  That is about it. Ada also has cortical blindness - which means she can see but since she doesn't have the brain she can't process what she sees.    As a result of this her optic nerves have deteriorated, so now she doesn't see as well as she did before.

After two weeks Ada's birthmom called the adoption agency and told them she was going to place her for adoption.  The adoption agency started looking for homes.  After two homes turned them down, the agency called us to take Ada in foster care.  We got all of Ada's medical papers and took them to our doctors.  The doctors told us they didn't think she would live long.  We were told she would only live 6-8 months-if that. We were told she would always be a vegetable.  Never being able to do anything.   They tried to discourage us as best they could.

After having Ada in foster care for about 3 months, we were asked if we wanted to adopt her.  She needed a loving home. Our whole family prayed about whether to adopt her or not.  After a few days, we knew it was right.  We knew Ada had to join our family.  So in September of 1997 we finalized Ada's adoption. Now Ada has a dad, a mom, three brothers and a sister.  The other sibling's ages at that time were 10, 6, 4 and 2 years old.  Now you know why it took much praying to decide if Ada should join our family.  We wanted to be able to take care of her properly and still be able to take care of the other children.  It was great having such a special daughter of our Heavenly Father in our home.  The other kids just love on her all the time.

In the first few months, we got Early Childhood Intervention to come out.  She gets services here at home.  They do Occupational Therapy, Physical Therapy, Dietary, Vision and anything else we need.  They are great.  They really love Ada.

When Ada was about 4 months old her head really started to grow.  It had grown a full inch in one week.  I knew that was not right.  I had been measuring it every week from the time we got her.  I called the doctor.  We got into the neurosurgeon that very day.  Ada had a VP Shunt placed two days later.  The doctor didn't want to wait to do it.  I had no idea they would do the surgery that soon.  It was great.  Ada didn't have to suffer too long from her head swelling too much. After the shunt placement things seemed to change.  Ada had learned she could cry.  She never cried before that.  Even though her birthmom said she cried all the time, she never cried at home with us.  Ada cried every time we put her down.  Her shunt would back up also.  We were always in the
neurosurgeons office.  The doctor said it was normal for the kind of shunt he put in.   That was not much comfort though.  The doctor said it would quit filling up in about 8 months to a year.  I didn't believe him.  Everyone I talked to about it hadn't heard of that either.  And much to my surprise, the doctor was right.   Almost exactly at 1 year it stopped.

Ada was very well most of the time, until she turned a year old.    She had been in the Hospital about 4 times with dehydration up to that point.  Everytime she gets sick she shuts down and quits eating and drinking.  She then winds up getting dehydrated.  Then we usually get hospitalized for 3- 5 days and she is okay.

Ada's doctor thought that she wasn't fat enough.  The doctor wanted to put a G-tube in her for feeding.  We were opposed to this because we felt she didn't need it.   The doctor kept trying to get us to do this.  We finally told the doctors, if they could prove medical necessity we would consider it.  A swallow study was done on Ada at about 13 months of age.  It showed that she had no aspiration.  She did have a little penetration with thin liquids, but if we give her liquids that are nectar consistency she has no
problems. Ada hasn't had any trouble with her shunt.  It seems to be working just
fine.  Everytime she starts getting sick and vomiting they check it.  So far it is okay. At about 2 years of age Ada started having seizures.  She was hospitalized and an EEG was done.  She was having petit mal seizures.  She was put on Phenobarbital at that time.  She since has been having a lot of break through seizures. The doctors have just put her on Topomax as well as Valium for spasms.

Ada had started loosing weight and had stopped growing when she was just over 2 years old.  She had to have a gtube (feeding) placed July of 1999.  She has been put in the hospital every 5-6 weeks since October of 1998 (a total of about 9 times).  Since her gtube was placed she hasn't had to be in the hospital. She is tube fed only now, as she aspirates when she is fed by mouth.  She has started growing again.

Ada has done everything the doctors told us she would never be able to do.  She has outlived her life expectancy.  Before Ada started having seizures she could roll from back to side to the other side.  Since she has been having seizures she has lost a lot of her ability to control her movement.  She has lost most of her head control, her sitting ability, and her rolling over to her side. Even though she has lost a lot of her ability to do some things there are things she does now that make up for that.  She laughs and giggles.  She smiles the most beautiful smile you have ever seen.  She radiates love
through her whole body.  She has her own way of communicating what she likes and dislikes.  She loves to be played with.  She loves playing with mylar.   She moves her whole body (as best she can) to play with her mylar.  She loves her switch toys.  She loves her brothers and sister. Ada loves to hear some music.  She loves to be sung to most of the time.  She has many favorite songs. If she doesn't like the song she cries and won't stop till she can't hear it anymore. She knows when someone is a good person or not.  She has a special gift of discernment.  She will cry if a person is not a good person.  She wants nothing to do with them.  But on the other hand, if you are a good person she will coo and laugh and make noises at them.

She has been diagnosed with Scoliosis and Kyphosis.   I have managed to get
her into Scottish Rite Hospital.  I was first told that her condition was too bad for them to take her.  I had to tell them that I would only do orthopedics' there and nothing else, so they agreed to take her.  Now that she has a hip going out, they have agreed to let her go to some of the other clinics there.  She goes to the dental and vision clinic now as well as the orthopedic clinic.  She has had her muscles in her legs clipped, because her
legs were pulling her hips out of place.  That was done at Scottish Rite.  .

Ada is now 3 years old.  She is a joy to be around.  Everyone always stops us and wants to look at her.  Strangers who don't even know what is wrong with her stop us all the time.  We are always told what a Great Spirit she has.   Ada is truly a very special daughter of our Heavenly Father.