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July 1993



Born on Monday, July 26, 1993.Weighing in at 4lbs 14ounces and 17 1/2 inches long. He was the biggest premie in the NICU.
 
Diagnosis
July 26, Pauli was diagnosed with Hydranencephaly.
He was wisked away after birth for an MRI and CAT scan.
(www.hydranencephaly.com)
 
August 93'


Pauli's head circumference grew too fast in his first few weeks of life.
In late August he had a VP Shunt placed ( at 4 wks old), to drain the spinal fluid that would get trapped in his little head. He came thru with flying colors, that same shunt worked for him his entire life- no revisions were ever needed. (http://www.divideclassic.org/Documents/ShuntInfo.htm)
 
June 1999, G-tube
Pauli's feeding really became an issue for him about the age of 5. He started to take a very long time to eat, we were get much less in him, he was ill more often so it was struggle for both him and I to get him to eat enough to substain his weight. So a gtube was placed just before his 6th birthday. We also found out Pauli had severe reflux. So severe, that when he refluxed it came all the way back up to the top of his throat and he was aspirating everytime causing pneumonia. So a nissen fundoplication was also done.
(http://www.remedyfind.com/rm-3172-Fundoplication.asp)
(http://www.nlm.nih.gov/medlineplus/ency/article/002937.htm)

What a difference the g-tube made in his quality of life! Pauli was able to get enough nutrition to gain and keep on weight, his meds metabolized better, we were able to get a ton of fluids in him without worring if he was going to aspirate on them. . . He respiratory issues became almost non-existant! If he was sick we could now feed him throught the g-tube and he could rest or sleep through it!!
He was healthier all around and much more alert.
 
Children's Wish Trip
When Pauli was 4 yrs old Children's Wish Foundation granted him a wish! We help make the wish for him, to go to Disney Land! What 4 or 5 yr old wouldn't enjoy that trip?
We waited almost wait almost a yr before we took the trip, Pauli's great grandma was dieing of cancer. We didn't want to leave and have her pass while we were gone. Pauli's health also was very stable at this time so he able to fully enjoy the trip.
His grandmother and mom went with him. He enjoy a full week stay at the Disney Institute and we visited a different park each day! It was also the first time any of us had flone on a plane. Pauli visited Magic Kingdom, Universal, MGM Studio, Animal Kingdom and Sea World.
(see photo album for photos from the trip!)
This trip turned out to the be the only family vacation we were able to take with Pauli. I will be forever gratefully to Children Wish Foundation for granting Pauli such a grand trip!
(http://www.childrenswish.org/)
 
Dancing with Angels. . .

Pauli left us on May 14, 2003 at the age of 9 and a half. He was two months shy of his tenth birthday.
He had not been feeling well the past week (was lethargic and quiet). So we took it easy with extra therapies and school. Sunday we went to Kay’s (restaurant) to spend Mother's Day with family as we did each year. Pauli was quiet and slept while we were there, even with his favorite little cousin Aly, trying to play with him. On Monday he stayed home from school, he was not acting right but really showed no signs of pneumonia. He didn't need any extra breathing treatments and his lungs sounded clear. By Tuesday morning his breathing be came a bit labored, he was very tense and he would moan softly with each breathe. So off to the pediatrician we went. His ped. felt we should stop by the ER just to get a x-ray of his hips and lungs. He was acting like he was in pain so we thought his sub-plexed hips were bothering him (causing the fast breathing and uncomfortablness he was feeling)and the chest x-ray was a precaution. His hips were over time dislocated and we knew surgery was in the future. Until he was in pain I did not want to put him through hip surgery.Turns out his lungs were so full of fluid they sounded clear when we listened to them. All four lobes were full; he had never had pneumonia that badly. So he was admitted to the PICU Tuesday Night.
By Wednesday morning he was struggling so hard to breath I had decided to have him put on a ventilator. The vent would allow him to be sedated & comfortable and his lungs to have some help while they had a chance to heal. As the PICU doctors were trying to vent him his little heart gave out. The doctors and I were not expecting that, we all thought it would be another "regular" hospital stay, we would get him on IV meds , aggressive respiratory therapy and he would be home in a few days! They worked on him for 35 mintues but his little body was just to tired.
He is dancing with the angels now. . . someday we will meet again.

 
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