|
Nate's has 2 Primary Diagnosis. The long list
of others are Secondary....
Nate was diagnosed on 9/19/2005 with
Chiari Malformation 0 (from a head MRI done 10/04) and he has a
Syrinx (on T2), a small tumor on his spinal cord referred to as
Syringomyelia (MRI done 9/9/05)..Click here for info:
~Syringomyelia~ or ~Syrinx or
Syringomyelia~
This is causing him to have reoccuring
headaches, back, hip, and leg pain. And what they feel is
irreversable Neurological damage (ie. eye rolling, and no sensation
to hot).
Nate also has a Rare Auto Immune Disease known as
Eosinophilic Gastrointestinal Disorder or EGID Click
Here:~What is EGID?~
It effects his entire GI Tract, top to bottom.
Nate is unable to tolerate any foods, and relies strictly on an
Amino Acid Based Formula known as Neocate One Plus as his sole
source of nutrition.It is not known if Nate will ever be able to
tolerate food of any type again (to date he has failed apple x4,
banana, green bean x2,cantalope, rice x2,watermelon, grapes,kiwi,
sweet potatos, green peas, brown sugar and
marshmallows).
Nate also has Chronic GERD, Chronic Aspiration,
Chronic Lung Disease,Asthma,Right Upper and Right Medial Lobe
Atelectisis,Laryngomalacia, Tracheomalcia, Delayed Esphogeal
Emptying, Anemia, Many Food Allergies, Inhaled Latex Allergy,
Multiple Environmental/Seasonal Allergies,Heterochromia (eyes of 2
different colors),Recurring Headaches, Hypotonia, Mild
Hyperlordosis, Hypermobility of Joints,Disruptive Behavior Disorder,
Obsessive Compulsive Disorder, Cognitive Delays, Moderate Sensory
Integration Dysfunction, and Moderate to Severe Speech and
Developmental Delays(age equivalent 30 months). He's been
hospitalized 34 times. With 20 being for Respiratory Distress
Syndrome. Nate also takes 14 various medications a day, and requires
frequent breathing treatments.
Nate recieves OT, Speech,
Physical Therapy,Aquatic Therapy and soon starting Mommy and Me
Gymnastics (for whole body strength building). He has severe
Hypotonia. His Developmental Pediatrican told us that most children
with this degree of low muscle tone do not walk. Nate was a late
walker, but bless his heart he did it. Nates speech is still pretty
impaired. Zachary and I are the only ones that can understand him
most of the time. He has about 30 words and he's beginning to use
them in hard to understand sentences, and is improving weekly. He's
been recieving therapy services for 24 months. I decided to stop the
Behavior Modification for now. Nate is now going to
~Angel Heart Farm~ for Equastrian Type Therapy. He loves all the animals
there!!. After much thought, research, and support I decided to give
the medications a try for his problems, but we had first tried lots
of extra love and hugs, lots of therapy, and just prayer. After a
followup with his DP, Nate finally received a diagnosis of
Disruptive Behavior Disorder and Obsessive Compulsive
Disorder.
Nate is a happy fun-loving 3 yr
old.. He LOVES Trains, Thomas the Train, Spiderman, Scooby
Doo,Incrediables, Sponge Bob, Spy Kids, and Stitch. He is the light
of our lives, and he and his big brother Zachary have a very special
bond. Nate brightens everyday, and he's my shining star in the night
when he's awake because he feels bad.
Nate attends preschool 2 days a week
for 4 hrs each day. He's at the same school as his big brother, but
in the Special Needs Preschool. He LOVES going to school, and they
are doing really good with him :)
Update:
March 22, 2006
Nate's Upper GI is tomorrow at 1:45, and Zach has already been up twice with a tummy ache..OH NOOOO!!!
I had to cancel the last Upper GI because Zach had that weird rash, and now he may be getting sick. This has to be done by Monday at 2:40, before the surgical consult.
Holy Cow!! One kid at a time here...LOLOL
Just wanted to update real quick. I will update again tomorrow with test results.
Love, Ashlie
|