Post by mailyn on Jun 19, 2002 18:50:06 GMT -5
Well, Hello to All: This is my formal introduction for Josiah and I here at Uno Mas!! 
First let me say what a blessing finding Uno Mas has been in my little world! Thank you all for the warm welcome and inclusion!
Now for the INTRO:
Josiah was born in April 1997. He was a very healthy little guy: 5 lbs. 11 1/2 oz. 17 1/2 in. Diagnosed with DS - Trisomy 21. His initial cardiology report read: 1) pulmonary hypertension, 2) PDA, 3) PFO vs ASD. At 1 mo.his cardio ckup was: "structurally normal heart". Thank God! His development was astounding. He was reaching all milestones on time. Even advanced on some! He was TALKING at age 4 mo!! Could say Mama, dada, buba, and nay-nay (to nurse).
During his 1st mo. he had obvious sinus allergies; unfortunately for us we had a royal QUACK for a pedi. Which sad to say started us on a downhill slide of medical damage that nearly cost us his life. He sustained a tremendous amount of insult and injury due to various drugs and unwarranted medical procedures during the first yr and a half of life. But God has been merciful. Josiah has been a determined overcomer!!!
A list of diagnosis follows should anyone have any questions on any of them - just ask! If you'd like to post your concern privately feel free to send me an e-mail directly. I've done tons of research on them and various treatments so I'd be glad to share what I know with anyone interested.
Respiratory ALLERGIES @ 1mo.
GERD @ 2mo. - treated w/drugs which then caused...
SEIZURES - Infantile Spasm & Complex Partial
Seizures treated w/drugs which then caused...
COPD (lung damage) & SEVERE HYPOTONIA which resulted in ASPIRATION and further lung damage...leading to OXYGEN DEPENDENCY
Due to negligent and abusive doc. performed a completely unwarranted NISSEN FUNDO/G-TUBE SURGERY @ age 8 mo. Which triggered over a year of uncontrolled daily seizures, loss of tone, nervous system dysfunction, aspiration, chronic lung crisis, etc. etc. by age 15 mo. docs totally gave up on him and pushed repeatedly for us to institutionalize him. (of course it was in 'our' best interest they said) HA!
God had much bigger and better plans for us and our little guy! By age 20 mo. no more seizures! ;D ;D Next hurdle: AUTISM
But like all the rest we expect to see God's glorious power displayed in Josiah overcoming this challenge too!
Presently: Josiah just recently celebrated his 5th Birthday!!!
Health-wise: He is stable in all areas. He weighs 33 lbs. and is 38 in. tall. We use Comolyn nebs for his allergies. Though still tube fed we strive ever forward to get him off...hopefully one day we will. Still no more seizures (since ending in Jan.'99) - Praise be to GOD! Excellent muscle build and tone due to vit/min. supplements. Reflux under control thanks to good tone and use of Zantac.
Developmentally: Of course because of the long standing seizure activity he has marked delay in all areas. But that doesn't stop him from trying! He is a super sensitive little guy, very affectionate and has a really cute sense of humor! Everyday he strives to move ahead and is always making new strides forward! He has recently mastered mobility in a ring walker and is having a blast getting into new stuff!! Though virtually non-verbal, (can say mama, dada, buba, ni-nite) he communicates in sound vocal gestures. We have been working on sign gestures & PEC for the past couple of years - he is gradually beginning to participate in these areas of communication. He has been potty-trained since age two!! Our biggest trial is with the Autism and sensory dysfunction - overload; socially and going to public places, ie. church, Wal-Mart, etc. He loves being outside though, so we do 'Park Days' with our local Moms club playgroup.
About me and the Family:
I am 37. Dh is 45. I have been a SAHM since before the birth of our eldest son, Jon-Michael (his first name only/not first and middle) who will be 17 in July. Have been married to my one and only dh for the past 18+ years. And in addition to the beautiful blessing of our son Josiah, God chose to bestow on us a precious daughter, Tabitha, who will be 2 years old in August. And is a little toot much of the time! But is also a tremendous asset to Josiah ...and me too! And so very affectionate! God has richly blessed me with a very special family!
About Pics: Cathy has generously offered to post mine for me so they should soon follow this intro! THANKS A BUNCH Cathy!!!! ;D ;D ;D
Sorry for writing a BOOK, but really wanted to share the miracle of my 'little misters' life!
Talk to everyone later!
God bless,
Love,
Lyn
First let me say what a blessing finding Uno Mas has been in my little world! Thank you all for the warm welcome and inclusion!
Now for the INTRO:
Josiah was born in April 1997. He was a very healthy little guy: 5 lbs. 11 1/2 oz. 17 1/2 in. Diagnosed with DS - Trisomy 21. His initial cardiology report read: 1) pulmonary hypertension, 2) PDA, 3) PFO vs ASD. At 1 mo.his cardio ckup was: "structurally normal heart". Thank God! His development was astounding. He was reaching all milestones on time. Even advanced on some! He was TALKING at age 4 mo!! Could say Mama, dada, buba, and nay-nay (to nurse).
During his 1st mo. he had obvious sinus allergies; unfortunately for us we had a royal QUACK for a pedi. Which sad to say started us on a downhill slide of medical damage that nearly cost us his life. He sustained a tremendous amount of insult and injury due to various drugs and unwarranted medical procedures during the first yr and a half of life. But God has been merciful. Josiah has been a determined overcomer!!!
A list of diagnosis follows should anyone have any questions on any of them - just ask! If you'd like to post your concern privately feel free to send me an e-mail directly. I've done tons of research on them and various treatments so I'd be glad to share what I know with anyone interested.
Respiratory ALLERGIES @ 1mo.
GERD @ 2mo. - treated w/drugs which then caused...
SEIZURES - Infantile Spasm & Complex Partial
Seizures treated w/drugs which then caused...
COPD (lung damage) & SEVERE HYPOTONIA which resulted in ASPIRATION and further lung damage...leading to OXYGEN DEPENDENCY
Due to negligent and abusive doc. performed a completely unwarranted NISSEN FUNDO/G-TUBE SURGERY @ age 8 mo. Which triggered over a year of uncontrolled daily seizures, loss of tone, nervous system dysfunction, aspiration, chronic lung crisis, etc. etc. by age 15 mo. docs totally gave up on him and pushed repeatedly for us to institutionalize him. (of course it was in 'our' best interest they said) HA!
God had much bigger and better plans for us and our little guy! By age 20 mo. no more seizures! ;D ;D Next hurdle: AUTISM
But like all the rest we expect to see God's glorious power displayed in Josiah overcoming this challenge too! Presently: Josiah just recently celebrated his 5th Birthday!!!
Health-wise: He is stable in all areas. He weighs 33 lbs. and is 38 in. tall. We use Comolyn nebs for his allergies. Though still tube fed we strive ever forward to get him off...hopefully one day we will. Still no more seizures (since ending in Jan.'99) - Praise be to GOD! Excellent muscle build and tone due to vit/min. supplements. Reflux under control thanks to good tone and use of Zantac.
Developmentally: Of course because of the long standing seizure activity he has marked delay in all areas. But that doesn't stop him from trying! He is a super sensitive little guy, very affectionate and has a really cute sense of humor! Everyday he strives to move ahead and is always making new strides forward! He has recently mastered mobility in a ring walker and is having a blast getting into new stuff!! Though virtually non-verbal, (can say mama, dada, buba, ni-nite) he communicates in sound vocal gestures. We have been working on sign gestures & PEC for the past couple of years - he is gradually beginning to participate in these areas of communication. He has been potty-trained since age two!! Our biggest trial is with the Autism and sensory dysfunction - overload; socially and going to public places, ie. church, Wal-Mart, etc. He loves being outside though, so we do 'Park Days' with our local Moms club playgroup.
About me and the Family:
I am 37. Dh is 45. I have been a SAHM since before the birth of our eldest son, Jon-Michael (his first name only/not first and middle) who will be 17 in July. Have been married to my one and only dh for the past 18+ years. And in addition to the beautiful blessing of our son Josiah, God chose to bestow on us a precious daughter, Tabitha, who will be 2 years old in August. And is a little toot much of the time! But is also a tremendous asset to Josiah ...and me too! And so very affectionate! God has richly blessed me with a very special family!
About Pics: Cathy has generously offered to post mine for me so they should soon follow this intro! THANKS A BUNCH Cathy!!!! ;D ;D ;D
Sorry for writing a BOOK, but really wanted to share the miracle of my 'little misters' life!
Talk to everyone later!
God bless,
Love,
Lyn
