happy birthday to my favorite nephew!
today was my nephews 1st birthday party. he is an amazing little boy and i want to share his story with my friends out there in blogging land.
Weston was born last october 2005. my brother and sister in law already had one child a little girl named ella, and they knew they were ready for another baby. they got pregnant, went for the ultrasound, and were unable to find out what they were going to have cause he didn't cooperate.
we all waited at the hospital for him to make his arrival, as we do for all new babies in my family, he was finally born around 9pm, but once he was here it was apparent something was wrong. he was taking a while to get pink and his abdomen was very distended. there was a slew of xrays, we heard they were watching gas bubbles in his stomach and intestines to see if they moved all the way through his bowel. they started talking about moving him to a larger childrens hospital, and they did at 1 am. i was with my mom and sister in law in the delivery room when they brought him in to say goodbye, they had him in a "moon box" a clear box as long as a gurney with lots of equipment on it beeping and flashing.
he ended up having his first surgery at 9 hours old, my brother at the pediatric hospital, my sister in law at the hospital she gave birth in. he came out of surgery with a colostomy and feeding tube in his abdomen.
for the next few months he lived in the hospital, had several surgies, and hovered around his birth weight, he was becoming a failure to thrive, he wasn't growing, it wasn't until he was 4 months old that he was diagnosed with cystic fibrosis, and lactose intolerance. they started him on enzymes, changed his formula and watched him blossom.
he is now a little heavier than my son(and six months younger) he is starting to crawl and pull up on things, he has a few words, in other words developing normally. he still has a feeding tube but his colostomy was reversed months ago.
he is not out of the woods, cystic fibrosis is a disease that will take it's toll on him over time. it causes all bodily secretions to be thickened, so mucus and lung secretions, digestive secretions, and so on and so forth. people with cf end up needing organ transplants, and the average life expectancy is 30, with people living much longer or much less.
today was a day to be greatful for what we have, a baby who is not currently in the hospital ( to be honest i lost track of how many admissions, but the last one was two weeks ago)who is sweet and smiley and a chunky little love bug. we don't know how hard this disease will be for him, but to be honest i try not to think about it because it is just disturbing.
we do lots of fundraising as a family, the cf walks, whiffle ball tournaments, bike races, whatever, because that is what my brother and sister in law need to do. just to throw this out there you can purchase cf greeting cards for the holidays as well as other great gifts here http://www.cff.org/GetInvolved/ShopTheMarketplace/
and here
https://www.cff.org/GetInvolved/LimitedCollectibles/limited_collectibles.cfm
they also have those rubber bracelets everyone wears , it's a deep blue, i wear mine everyday.
so happy birthday weston! we love you!
Weston was born last october 2005. my brother and sister in law already had one child a little girl named ella, and they knew they were ready for another baby. they got pregnant, went for the ultrasound, and were unable to find out what they were going to have cause he didn't cooperate.
we all waited at the hospital for him to make his arrival, as we do for all new babies in my family, he was finally born around 9pm, but once he was here it was apparent something was wrong. he was taking a while to get pink and his abdomen was very distended. there was a slew of xrays, we heard they were watching gas bubbles in his stomach and intestines to see if they moved all the way through his bowel. they started talking about moving him to a larger childrens hospital, and they did at 1 am. i was with my mom and sister in law in the delivery room when they brought him in to say goodbye, they had him in a "moon box" a clear box as long as a gurney with lots of equipment on it beeping and flashing.
he ended up having his first surgery at 9 hours old, my brother at the pediatric hospital, my sister in law at the hospital she gave birth in. he came out of surgery with a colostomy and feeding tube in his abdomen.
for the next few months he lived in the hospital, had several surgies, and hovered around his birth weight, he was becoming a failure to thrive, he wasn't growing, it wasn't until he was 4 months old that he was diagnosed with cystic fibrosis, and lactose intolerance. they started him on enzymes, changed his formula and watched him blossom.
he is now a little heavier than my son(and six months younger) he is starting to crawl and pull up on things, he has a few words, in other words developing normally. he still has a feeding tube but his colostomy was reversed months ago.
he is not out of the woods, cystic fibrosis is a disease that will take it's toll on him over time. it causes all bodily secretions to be thickened, so mucus and lung secretions, digestive secretions, and so on and so forth. people with cf end up needing organ transplants, and the average life expectancy is 30, with people living much longer or much less.
today was a day to be greatful for what we have, a baby who is not currently in the hospital ( to be honest i lost track of how many admissions, but the last one was two weeks ago)who is sweet and smiley and a chunky little love bug. we don't know how hard this disease will be for him, but to be honest i try not to think about it because it is just disturbing.
we do lots of fundraising as a family, the cf walks, whiffle ball tournaments, bike races, whatever, because that is what my brother and sister in law need to do. just to throw this out there you can purchase cf greeting cards for the holidays as well as other great gifts here http://www.cff.org/GetInvolved/ShopTheMarketplace/
and here
https://www.cff.org/GetInvolved/LimitedCollectibles/limited_collectibles.cfm
they also have those rubber bracelets everyone wears , it's a deep blue, i wear mine everyday.
so happy birthday weston! we love you!
posted by ALI at
10/28/2006 11:00:00 PM
2 Comments:
My nephew has Muscular Dystrophy, so I speak from experience when I say that you are right to not dwell on his illness and how things will be for him. Dwell on his LIFE. He'll have a great one, with so much love in it.
Happy birthday to him!
By
Her Bad Mother, at 9:29 AM
thank you for your kind words, he is very loved and amazingly cute, you should have seen his superman costume at his birthday party! he takes enzymes with his food (creon) that his family has been calling kryptonite for quite a while now..he really is a superman!
By
ALI, at 2:31 PM
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