A
lot of time has passed since I last updated. Nathan continues to battle
seizures. At the end of April we put him on the Ketogenic diet. It seemed at
first that this was going to help, but just like when we increase or add a
medicine, it works for a little while then they slowly come back. We have
kept him on the diet. In July he began having “jerk” seizures along with his
“normal” frontal lobe seizures. He seemed to be either running fever or sick
when he was having these so I kind of let it go for a bit. We finally added
a fourth seizure med-Vimpat. Nathan was on it for 3 weeks. We didn’t see any
improvement with the seizures, they had even possibly gotten worse and he
was very irritable.
Early August we went and talked to the neurologist. At this point he was
having possibly three different types of seizures and they were occurring
off and on all day and night. If he wasn’t sleeping, he was fussing or
screaming. We took him off the Vimpat and switched to Clonazepam. After a
week on it we could see a decrease in the seizures. Although, ten days after
he had started it he woke up running 103. We took him in to the doctor and
he began having the “jerk” seizures. They are myclonic seizures. His eyes
roll back and his arms flare out and he shakes just for a few seconds. It
looks as if he is getting an electrical shock. He had them the whole time we
were in the waiting room and some when we got back into a room. We counted
133 of these in a time span of an hour and ten minutes.
The doctor put him on an antibiotic. Since early July Nathan will run a temp
every three weeks. One day it was 105 and they did chest x-rays and blood
work. The blood work showed elevated white blood cells, so they put him on
an antibiotic. He is actually home with me today because of a low grade
temp. It seems some days that there is a lot of seizure activity going
on….the jerks, blank stares, eye fluttering. It has got to the point where I
just don’t know what is and what isn’t.
We have discussed another 48 hour video EEG just to see what all is going
on. Hopefully we can get this done and determine how much is going on and if
it is as much as I think it could be we are leaning towards a surgery. It is
called VNS-Vagus Nerve Stimulation.
 With
him being on four seizure meds and a diet for seizures and he is still
having numerous seizures, we have to look elsewhere for relief for him. We
believe the seizures are holding him back developmentally. He continues to
roll all over and drag his milk bag behind him or wrap all up in the tube.
He still does not sit on his own.
We have gone through a period of frustration where we cannot understand what
he wants or is trying to tell us and he loses patience with us. One day he
had my ear with one hand and my hair with the other and pulled me down to
his face and let me have it. I don’t know what he was telling me but he
meant what he said and all I could do was apologize for not understanding
what he wanted. It was kind of funny and cute but sad that we can’t always
figure out what he wants.
He moved up a classroom at his school and all the kids love him and
want to help with him. They all call him NA-NA. He even has a little girl
that gets jealous if another girl is close to “her NA-NA”.
We continue to take each day that we are given and enjoy it and thank God
for our many blessings!
Amanda Shepherd
 11-
0-08
At the end of February we put Nathan on continuous feeds. The difference it
made in him was amazing. I didn’t realize how bad he sounded trying to
breath until it cleared up after a few days on the pump. We were able to
take the boys to the beach for the first time. It was so nice not having him
throwing up all the time. In mid April the neurologist had us decrease his
Keppra because it had been almost a year with no seizures, I wasn’t happy
about doing it but I thought “well, he is the doctor”. Nathan began having
seizures. We had to increase his Keppra above where he had been to get the
seizures under control. In July he began having a different type of seizure.
By the end of July he was having 1 to 2 every night and they were lasting 4
to 5 minutes. After a few weeks of this they added a third seizure medicine.
He is now on Topamax, Keppra, and Zonegran. They finally did an EEG and they
called back saying that it was normal. I was a little frustrated because he
was still having the seizures and I didn’t know how much more he could take
or how many more I could see him go through. At the end of August they did a
48 hour video EEG and they were able to record two seizures. They increased
the Zonegran and he was now on the maximum dose of three seizure medicines.
The seizures decreased and eventually disappeared. In mid-September he had a
scan on his left ear. He has partial atresia. The ear canal narrows to just
a small opening and there is just a piece of an ear drum. The doctor is
going to check on it every six months and will surgically repair it in a few
years. We wanted to try to get Nathan some more time off the pump through
the day. We have tried several times to increase the rate but he just can
not tolerate it.
He is growing well. He is 31 pounds and is 3 feet tall. His newest thing is
to blow raspberries, well half the time his tongue is out and he is just
plain spitting! He will keep at it until his chin is covered in slobbers.
What a joy he is. When you pick him up you just expect to get a smile and a
hug or maybe a new hairdo! He is definitely a love bug. With Thanksgiving
coming up I have so many things to be thankful for and have been blessed
with so many things but I would have to say that I am most thankful that
Nathan is here with us for another holiday season and that he is doing so
well.
Amanda Shepherd
- - -
1/14/08
 Nathan
had his palate repaired in June. He had a rough time breathing afterwards
but as always he fought through it. Since his repair it has been a struggle
getting him to eat orally. In July we began tube feeding Nathan Pediasure
instead of formula. He seemed to tolerate it well. Nathan developed a cough
and I noticed him refluxing more. We began to increase his meds. He began to
throw up. He was losing weight. It had got to the point where we would put
him in his chair to feed him (which would take about 40 minutes) then we
would have to leave him sitting there for about an hour afterwards because
if we moved him he would throw up.
All this seemed to start when we started the Pediasure so in October we
switched him to Peptamen Junior. It seemed good for a few weeks but then he
started throwing up again. On Nov. 12, I walked into the room and found
Nathan white as a sheet of paper with blue lips. He was shaking his head
from side to side trying to get a breath. I moved him around and he was
totally out at this point so I gave him rescue breaths and finally got him
breathing again. A week later we had an appointment with the GI doctor. They
scheduled him for an EGD (stomach scope) for December 27. On December 10,
Nathan threw up and immediately quit breathing. I did the usual moving him
and beating on his back. I got him to throw up again but still no breathing.
When I tried a rescue breath I could hear it hit fluid and make a gurgle
noise. I began to panic. I listened to his chest and heard rumbling. I tried
another breath then went to get the phone to call 911. I told her everything
and finally came to my senses and went to find the bulb syringe. It took a
lot of time and suctioning for him to finally take a breath. It was the
longest he had ever been out. When the ambulance arrived they put him on
oxygen and transported him to the hospital. He was running a temp, had an
ear infection, and bilateral pneumonia. He stayed in the hospital for two
nights. Because of the pneumonia they had to postpone the EGD. It is now
scheduled for January 17. Hopefully we can fix his stomach issue. "Nathan
makes us laugh every day with his little personality. He will definitely let
us know if we aren't doing what he wants us to or if he wants us to pay more
attention to him! And if he doesn't want you talking to him he can ignore
you like you aren't even there. Everyone can't help but fall in love with
him, especially when he gives you that big grin!"
He can pretty much roll and scoot to get where he wants. When the Christmas
tree was up he would get over underneath it and pull a strand of beads off
to play with. Just this past week he has started prop sitting on his own for
about 20 seconds. He is such a happy child when his belly is not hurting
him. He loves for his Daddy to toss him in the air. We are so proud of him!
Amanda
adeanshep@yahoo.com
- - - -
 Update 4-25-07
Nathan had some trouble with seizures but we finally got them under
control. He had a wonderful 1st Birthday. He was hospitalized on April 11
with a viral infection in his lungs and ear infections. He is doing much
better. He got his glasses and absolutely loves them! He is now exploring a
whole new world that he did not know was out there. He smiles and laughs all
the time. Keep him in your prayers for his next surgery (palate repair)
scheduled for June 14.
Amanda
Update 12/6/06
Our little flower continues to blossom and bring us much joy. It is amazing
to watch him grow and learn. He now weighs in at 16 pounds and seems to be
getting stronger every day. Nathan has been diagnosed with myclonic
seizures and is now on medication. On November 17 he had a definitive lip
repair done and his skin tag removed. The surgery went well and he looks so
good. We are looking forward to celebrating his 1st Christmas!
Amanda
Update 9-1-06
On August 1 Nathan had his g-tube put in. Two days after we got home I
Nathan threw up and the next morning his stomach was swollen. We took him
to the doctor who sent us to get an x-ray and they called and said he had
air in his abdomen that they were going to fly him to Arkansas Children's
Hospital. They were having storms so we rode in the ambulance. They said
it was pneumoperitoneum (free air in the abdomen outside of the
intestines). We stayed for two nights. On August 25 Nathan had his second
surgery. He had a lip adhesion, his tongue released, and tubes put in one
ear. The were unable to put tubes in the left ear because he has no space
in the middle ear. They also did an MRI on his brain and it came back as
underdeveloped corpus callosum, which is what we already knew from the CT
scan. His next surgery will be in November for a definitive lip repair.
 
Update 7-28-06
Nathan will have his first surgery on August 1 to put in a G-tube. His
second surgery will be August 25. They will fix his lip and put tubes in
his ears. They are also going to do an MRI of his brain will he is out. We
saw the ophthalmologist and he said that along with the coloboma in his left
eye he also has a small white spot on the cornea and he is nearsighted in
that eye. Nathan now weighs 11 pounds and 2 ounces.
Amanda
------
My
name is Amanda and my husband is Daniel. We live in Alma, Arkansas. I gave
birth to Nathan Andrew on March 15, 2006. He was born 3 weeks early and
weighed 6lbs 15oz. We did not know anything was wrong until he was born
with a cleft lip and palate. He was diagnosed a week later with full
Trisomy 13.
We have found out so far that Nathan has partial agenesis of the corpus
collosum, coloboma in the left eye, cleft lip/palate, ASD, and a small
polydactyl on his left hand. He is on medicine for reflux. He holds his
breath and turns purple/red and a few times I have had to give him rescue
breaths to get him breathing again. His episodes have seem to gotten less
frequent. We are dealing with ear infections right now. We are scheduled
to see an ENT specialist, a neurologist, and a surgeon.
Nathan is doing good. He now weighs about 9lbs. He rolled from his
belly-back and back-belly by 2 1/2 months old. He also smiles at us.
We couldn't decide on a name. My husband liked Jacob. About a month and a
half before he was born I decided to go with Jacob and my husband said he
wasn't sure about it any more. We started the search again. I said Nathan
and he liked it so we finally had a name. The name was perfect because it
means "A Gift From God".
Amanda Shepherd
adeanshep@yahoo.com
 Update 6/23/06
Nathan hasn't been eating because of his ear infections and had actually
lost weight. We went to our Children's hospital to see the ENT doctor. We
had a tube put down his throat and what he doesn't eat we are putting down
the tube. Now that he is getting full and is over his ear infections he is
a happy baby again. He had gained 10 ounces last week. We went to see the
cardiologist and she cleared him for surgery. He has a small ASD but it is
causing no strain on his heart. We go back to see her in 2 years. We have
a few more appointments before he has his first surgery. We are hoping to
have it done in August sometime. He will have tubes put in his ears, his
nose and lip fixed, his tied tongue snipped, his polydactyl removed, and a
G-tube put in.
  
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