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MOM TO A 1LB 12OZ 27 WEEKER
Leonardo's Mom |
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NICU REUNION 2008
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Sep 22, 2008 04:54pm (EST)
Leonardo had his 2nd NICU reunion on Saturday. It was so much fun for him and for us. We saw so many "miracle" babies and we also saw 3 of his roomates. They are beautiful little girls. It was nice to see them and their moms. 1 of them is expecting. how exciting!!
When Leonardo was in the NICU I met a mother who had twins a a girl and a boy. She lost her baby boy after a couple of weeks of him being born. On Saturday I saw her with her daughter and to my surprise she had a baby boy about a year old with her. That was also really nice to see.
We saw about 4 nurses who cared for Leonardo while he was there and the we really happy o see him. We took pictures, ate, and just had lots of fun. It was a LUAU theme. Leonardo entered a raffle and he won....he won a teddy bear that has a cute sweater that says I was born at Kaiser San Francisco.
I will post pictures later.
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Posted by Leonardo's Mom | Comments: (2) | Permalink
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I THOUGHT WE WERE DONE....
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Sep 19, 2008 12:33pm (EST)
Leonardo is doing well….
Its been a while since I updated and so many things have happened. He now speaks a lot more and signs more he is just so smart. I really think he is. The doctors well they think a little different. He had his High Risk Follow up and things didn’t turn out too well because Leonardo will soon be seen by an Educational specialist and he will also have some genetic testing to see if he has Smith-Lemli-Opitz syndrome. ** see info on this syndrome below. When I was pregnant I was tested and my results for this syndrome were positive and now with the problems Leonardo is having/had they want to test him. I am scared!!!! I don’t want it to be positive. I thought we were done…. but were not. 
In his case it’s a little harder to determine if his problems are from being a preemie or from this syndrome. We’ll see what the results are.
He starts speech therapy on Thursday and he continues to receive OT. He now weights 21 lbs 1.5oz and is about 32 inches tall. ( he is below the 5th percentile).
He is beginning to like TV…he is only interested in watching Elmo and Barney. He also loves the KIDSONGS dvd’s.
I don’t know what else to do for him. He is on Pediasure 3 to 4 bottles a day.He also takes 1 bottle of the Instant Breakfast carnation juice. Polycose powder (additional calories) and all high calorie foods. The bad part is that he is a picky eater.
I can not believe that in about 7 months he will be 3 years old. My 1lb 12oz baby boy will be 3!!! OMG!
He is fascinated with motorcycles and loves to watch them in person or on TV. He has many toy motorcycles. I really hope that he looses interest as he gets older. It scares me to think that he’ll want to have a real one.
His hugs and kisses are the best!!!
**Smith-Lemli-Opitz Syndrome (SLOS) is a genetic disorder that affects the development of children both before and after birth. The syndrome was first described in 1964 in three boys with poor growth, developmental delays, and a common pattern of congenital malformations including cleft palate, genital malformations, and polydactyly (extra fingers and toes). Although the name "RSH syndrome" (after the first initials of the first three patients) was first used for the disorder, the syndrome is now better known by the names of the three geneticists who first described it, Smith, Lemli, and Opitz. Although SLO/RSH Syndrome has always been known as a genetic disorder, the cause was not known for the first 30 years after its description. In 1993 scientists discovered that children with SLO/RSH Syndrome are unable to make cholesterol, an essential nutrient that is not provided by the mother to the baby before birth. Because the body also makes most of its own cholesterol after birth, children with SLO/RSH Syndrome continue to have trouble with development and general health after birth. The discovery of abnormal cholesterol metabolism in SLO/RSH Syndrome has made possible not only a laboratory test for more precise diagnosis of SLO/RSH Syndrome, but also provided a rationale for treatment of affected children. Given the advances of medical treatment, often the children can now live to adulthood.
In addition to growth retardation and developmental delay, many different malformations have been described in SLO/RSH Syndrome. The most common defects are:
- Microcephaly (small head)
- Extra fingers or toes
- Apparently low-set ears
- Small, upturned nose
- Webbing between 2nd and 3rd toes (syndactyly)
- Abnormal palmar creases (usually single)
- Cleft palate
- Hypospadias (genital malformation in boys)
- Cataracts
- Undescended testicles
- Blepharoptosis (drooping eyelids)
- Heart defects
- Micrognathia (small chin)
- Pyloric stenosis
- Short thumbs
- Hirschsprung disease (absent nerves in colon)
see pix below:
On his favorite sofa
On his play motorcycle....he loves it
This is his way of shopping....under all the clothes
Another play motorcycle
He was trying to get into this room....he went got a chair and a pencil and is tryint to open the door
DSC02414
DSC02434
DSC02454
DSC02500
DSC02485
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Posted by Leonardo's Mom | Comments: (3) | Permalink
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GO AWAY...GO AWAY
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May 20, 2008 10:10am (EST)
Ear infection.... again, but this time its his left ear. On Friday I took him in because it looked like he had some kind of infection in his eyes. 2 days in a row he woke up with his eyes shut-closed. He had white-yellowish discharge coming out of them. I took him in and Dr. A realized that he had an ear infection. She decided o put him on Amoxicillin because she says its a little stronger and it may help for both the ear and the eyes. Leonardo took it but about an hour or so later he was vomiting...and then about 20 minutes after that he was vomiting again. This happened both times that I gave him the medicine. I decide to call the hospital and they said to bring him in. Dr. checked him out explained to me that she doesn't believe that the medicine had this reaction that it must be a virus. She did decide to take him off the medicine since the ear infection seems o be getting better. He's so strong that he is acting like he has nothing. The infection has not affected him. It seems that its all viral...he did have a mild cold. She asked me to call and/or bring him back in if he looks like he's in pain or if anything changes gets worse. His eyes are better...whatever it was that he had is all gone. His cold is also gone. 
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Posted by Leonardo's Mom | Comments: (1) | Permalink
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I AM SCARED..
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Oct 15, 2007 01:31pm (EST)
When I was pregnant I got a test done…the one where they tell you if your baby will have a birth defect. I forget the name of it. Mine came back positive. I remember I cried so much that day. I was scared. I had the option to get more tests done to find out what the birth defect may be. We as a family decided that we didn't’t need to know. I remember my mom asked me what if you find out the baby has a defect are you going to LOVE him/her less? I said No. Then she said then you don’t need to do any more un-needed tests. My husband thought the same.
I haven’t talked about this in the past with anyone. Only my mom and husband know. I feel that sharing it here is ok because I know you guys will understand. Leonardo will be having surgery on the 31st of October and I am scare to death. I hate the fact that once again he will go through pain and discomfort. I hate thinking about it let alone talking about it. I cry everytime. I don’t understand why? wasn’t 3 surgeries enough? Why another 1? Leonardo has hypospadious and so he is getting surgery to repair it. Tomorrow we are going to have 3 different appts. All are pre-surgey appts. I know this isn’t a life threatening surgery but I am scared…..
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Posted by Leonardo's Mom | Comments: (4) | Permalink
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