Ammon Update 7/23/08

Thanks Amy for asking about Ammon. I guess I haven't posted an update in
a while other than letting you know he loves even those in legal
trouble. LOL! Ammon is a very good friend maker, hugger and kiss giver.
He loves people and people love him back.

Medically, he's not doing as well. He continues to have seizures weekly
and they are generally on Sunday. It seems to be his pattern. He is now
having more seizures that lead into status epilepticus which means they
are prolonged and requires us to give him anal diastat to stop. Its
highly unnerving for us and devastating for him.

Ammon still has the arachnoid cyst of his left cranial fossa and he has
abnormal electrical activity on both sides of his brain so disconnecting
part of his brain to stop the seizures is not an option either. Our
neurologist has not officially diagnosed Ammon as having a specific
diagnosis but in my research I keep being directed to Lennox Gasault
Syndrome. Ammon fits the markers so well. I can't really convince myself
he doesn't have this. I feel in my heart that he does. Let me share with
you what LGS is:

*What is Lennox-Gastaut Syndrome?*
Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually
begin before 4 years of age. Seizure types, which vary among patients,
include tonic (stiffening of the body, upward deviation of the eyes,
dilation of the pupils, and altered respiratory patterns), atonic (brief
loss of muscle tone and consciousness, causing abrupt falls), atypical
absence (staring spells), and myoclonic (sudden muscle jerks). There may
be periods of frequent seizures mixed with brief, relatively
seizure-free periods. Most children with Lennox-Gastaut syndrome
experience some degree of impaired intellectual functioning or
information processing, along with developmental delays, and behavioral
disturbances. Lennox-Gastaut syndrome can be caused by brain
malformations, perinatal asphyxia, severe head injury, central nervous
system infection and inherited degenerative or metabolic conditions. In
30-35 percent of cases, no cause can be found.

*Is there any treatment?*
Treatment for Lennox-Gastaut syndrome includes anti-epileptic
medications such as valproate, lamotrigine, felbamate, or topiramate.
There is usually no single antiepileptic medication that will control
seizures. Children who improve initially may later show tolerance to a
drug or have uncontrollable seizures.

*What is the prognosis?*
The prognosis for individuals with Lennox-Gastaut syndrome varies. There
is no cure for the disorder. Complete recovery, including freedom from
seizures and normal development, is very unusual.

*What research is being done?*
The NINDS conducts and supports a broad program of basic and clinical
research on epilepsy including Lennox-Gastaut syndrome. These studies
are aimed at finding the causes of these disorders, improving the
diagnosis, and developing new medications and other therapies.


Mental retardation and global developmental delay are the rule with such
epilepsies, since the brain has little chance to recover long enough to
continue developing in between seizures

We continued to hope that since Ammon came from such a deprived
environment until his adoption at nearly 4 years old that we would see
him making up for this with extra stimulation and lots of time. We
aren't seeing the huge jump forward in cognitive learning and
development that we so hoped for. It is physically painful for me to
say, "Ammon has mental retardation". Its not because I love him less
with his diagnosis or that I can't accept it but it seems to label him
as something much different or less than he is. There is SO MUCH more to
this happy, friendly, handsome boy and to describe him as mentally
retarded just causes a huge ache in my heart. I even HATE the word. Why
do doctors and educators still use this term? But they do. If any of you
with children who are labeled MR could share with me how you deal with
this term I would really appreciate it. I'm kind of lost.

What I do know for sure is that we cherish Ammon and he brings us
joy...stress too...but we are blessed to be part of his family.

Its Caden B. Ellison Day!

We have just returned from the courthouse and then a celebration
breakfast at Caden's restaurant of choice. He picked out Denny's.
Why the fun? Because it is Caden's Adoption Day!!

Of course I had everyone lay out their clothes last night and then 30 minutes before we had to leave this morning Caden decided he wanted to wear Chinese clothes. A quick change of clothes for many and there we have it!

The judge allowed Caden to sit in his honorable chair and Caden has
now decided that he will become a judge. The buzz of power radiating
from the chair was something Caden really enjoyed. By the time we got
home Caden had moved from judge, clear to President of the United States!

We've put his courtroom pictures on the blog today. WAHOO!

Now, Caden's big brothers felt that they better prepare Caden for any
of the judge's questions. They convinced him that he would have to
spell his last name without any mistakes. So, Caden was disappointed
when the judge didn't ask him and asked for the chance to spell it for
him anyway. On the official docket for the court it clearly shows
that Caden can spell ELLISON. LOL!

On the way out of the court room, Ammon the friend maker, hugged every
defendant and their lawyer who were waiting in the hallway to enter
the court. Ah, the look of shock on the faces of these hardened souls
was quite a chuckle.

It was a treat to have all our adopted children in the courtroom
today. They don't remember well their own adoption days and this was
eye opening for them too.

Happy, Happy Adoption Day Caden Bakos Xinhui Ellison! When I get time
I'll post more pictures on the blog.

Its the "NORTH OF JULY"

Lan is sure that this holiday is called the "North of July" so there you have it. Here are shots from our fun day!

Caden's birthday party pictures!!

And can you just feel the fun???

Caden has a BIRTHDAY!

Caden has his 8th birthday today! Here are some pictures taken at the campout with Yuyu his VERY GOOD friend who also had her 8th birthday just days ago. These two have become quite a companionship. It is very sweet.

More pictures will be posted later tonight after the birthday party. Caden is THRILLED that he has no chores today because it is his special day.

We hope that Indiana Jones and Star Wars characters end up in presents because he LOVES these two movies and heroes.

Why we should just BUY jelly, not make it

Life lesson #348 was learned today in the Ellison kitchen.  Due to
dramatically rising food costs, I decided that I would save money and
put up many bottles of strawberry jelly.  What I didn't factor in to
the cost was what a trip to the emergency room would add!

My son Aaron decided that it would be interesting to see what would
happen if he put his finger on the blade of the rotating electric hand
blender...while it was rotating.  The result?  His pointer finger on
his left hand became hamburger.  Ever seen what it can to do a
strawberry?  It does the same thing to a finger.  The finger was
shredded to the bone.  After Aaron passed out in the kitchen, we took
a very fast path to the emergency room where the doctor lost count of
the stitches after 25 of them.

Aaron is now resting in bed and preparing his speech to his siblings
on what happens when you are tempting to try experiments with sharp
blades.  WALK AWAY!!