Tumacacori, Arizona
I am biologically Jody's paternal grandmother. My son's girlfriend walked out of the hospital and abandoned him because she didn't want a "sick baby." I took emergency guardianship of him when he was only 9 days old and adopted him 2 months short of his 4th birthday.
Jody was born 8 weeks premature to my son's 18 year old girlfriend. He was diagnosed at birth as having MDS and Congenital Leukemia. He spent almost a month in NICU and a total of 6 months after his birth in the hospital. He was treated for the CL with massive doses of Allopurinol and Prednisone (both steroids).
At one point he went from a weight of 4 pounds to almost 11 pounds...he looked like a miniature Pillsbury Doughboy...thankfully after he went into a "spontaneous remission," the medications were stopped and his weight went back to normal. Further DNA and chromosome testing were done and he was re-diagnosed as having Transient Myeloproliferative Disease instead of CL. TMPD is a "clone" and a precursor to a full leukemia. I was told that Jody had a 30% chance of developing true leukemia...probably no later than by the time he was 4 years old.
I enrolled Jody in an early intervention program sponsored by our state. He was doing physical therapy, occupational therapy, massage therapy, speech therapy, play therapy...any kind of therapy I could get him into. I then enrolled him in half-day 3 & 4 year-old-programs through our public school system for physically/emotionally/mentally challenged children.
The only physical characteristics that Jody has are simian creases in his palms, extra wide space between his big and 2nd toe, widened space between his eyes, thickness of his neck, and a tongue control problem.
His primary problems are medical and learning disabilities.
Jody has had more ear infections and upper respiratory infections than I care to remember but after having tubes put in the ear infections stopped totally. He has allergies galore. He had reflux until he was about 3 1/2. He had infantile seizures for about 6 months...but they stopped as quickly as they started. He also has a heart murmur.
He still has difficulty with low muscle tone in his lower body...he trips and falls quite often...has difficulty with running...cannot maneuver stairs without a handrail...and was just starting to get the hang of his tricycle when he was diagnosed with Acute Myelogenous Leukemia in early October of 1999.
He had just started kindergarten with an IEP in place when the AML was diagnosed. He is enrolled in a wonderful school system that sends a teacher to our hospital when he is inpatient and/or our home because he is feeling "yucky" after chemotherapy. She comes 3 days a week for several hours each session. He is working on his alphabet, can count to 8 so far, is working on trying to write his name but recognizes his name when we spell it.
He has a pretty good vocabulary. Some words and phrases are very difficult for him to master but he continues to persevere and improve those. We constantly sound out words that are difficult.
Everyday is a challenge with Jody...we strive to help him be the best little guy that he can be. I believe that the sky is the limit with him...we know that he will probably have some limitations...but only to the extent that Jody sets them!
Jody has just completed 6 months of high dose chemotherapy for Acute Myelogenous Leukemia and is scheduled to start a bone marrow transplant this coming week. He will be hospitalized for 6-8 weeks until his bone marrow engrafts again. We need all the prayers and support we can get to emotionally get through this difficult time.
Jody is undoubtedly our little "miracle."
At one point he went from a weight of 4 pounds to almost 11 pounds...he looked like a miniature Pillsbury Doughboy...thankfully after he went into a "spontaneous remission," the medications were stopped and his weight went back to normal. Further DNA and chromosome testing were done and he was re-diagnosed as having Transient Myeloproliferative Disease instead of CL. TMPD is a "clone" and a precursor to a full leukemia. I was told that Jody had a 30% chance of developing true leukemia...probably no later than by the time he was 4 years old.
I enrolled Jody in an early intervention program sponsored by our state. He was doing physical therapy, occupational therapy, massage therapy, speech therapy, play therapy...any kind of therapy I could get him into. I then enrolled him in half-day 3 & 4 year-old-programs through our public school system for physically/emotionally/mentally challenged children.
The only physical characteristics that Jody has are simian creases in his palms, extra wide space between his big and 2nd toe, widened space between his eyes, thickness of his neck, and a tongue control problem.
His primary problems are medical and learning disabilities.
Jody has had more ear infections and upper respiratory infections than I care to remember but after having tubes put in the ear infections stopped totally. He has allergies galore. He had reflux until he was about 3 1/2. He had infantile seizures for about 6 months...but they stopped as quickly as they started. He also has a heart murmur.
He still has difficulty with low muscle tone in his lower body...he trips and falls quite often...has difficulty with running...cannot maneuver stairs without a handrail...and was just starting to get the hang of his tricycle when he was diagnosed with Acute Myelogenous Leukemia in early October of 1999.
He had just started kindergarten with an IEP in place when the AML was diagnosed. He is enrolled in a wonderful school system that sends a teacher to our hospital when he is inpatient and/or our home because he is feeling "yucky" after chemotherapy. She comes 3 days a week for several hours each session. He is working on his alphabet, can count to 8 so far, is working on trying to write his name but recognizes his name when we spell it.
He has a pretty good vocabulary. Some words and phrases are very difficult for him to master but he continues to persevere and improve those. We constantly sound out words that are difficult.
Everyday is a challenge with Jody...we strive to help him be the best little guy that he can be. I believe that the sky is the limit with him...we know that he will probably have some limitations...but only to the extent that Jody sets them!
Jody has just completed 6 months of high dose chemotherapy for Acute Myelogenous Leukemia and is scheduled to start a bone marrow transplant this coming week. He will be hospitalized for 6-8 weeks until his bone marrow engrafts again. We need all the prayers and support we can get to emotionally get through this difficult time.
Jody is undoubtedly our little "miracle."
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