Tuesday, June 28, 2005
Friday, June 24, 2005
Thursday, June 23, 2005
Three month mark.
Hi.
We took Evelyn to see the Pediatric Geneticist and the director of PedsCare today. We are now at three months and are entering a new stage, so we needed some advice about the future and what may come next.
We had last been there when she was 2 weeks old. At that time the understanding was that she did not have much longer to live. Now she has lived much longer than expected. This is due to all of Elizabeth's mothering and our support from PedsCare. Truly. The Pediatric Geneticist was clear that the only reason she is still alive is because of Elizabeth.
With the three month milestone behind us we look ahead to the next six months when she will be between three and nine months.
This is medically unchartered waters so it is difficult to know what to expect. As she becomes more active she may injure her wound and it will become infected. As her brain grows it may run out of room and she will fall into a sleep and stop eating and breathing. This is also the time when 60-70% of kids manifest seizures which would interfere with her ability to breath.
So these are the things that are likely ahead. She will always be severely handicapped for the remainder of her life which may be as long as her first birthday.
In the meantime, for those of you who have met her, she is largely the same. She is getting very fat, likes to cooo and still smells good and is soft to kiss.
The boys love her so much it is wonderful.
She is a joy to have around.
We are all very happy and life is mostly normal.
Over then next few years we will thank everyone individually. Every day I could fill the daily postings with people who helped that particular day not to mention the people from Alaska to Okinawa to England and Iraq who pray for her everyday and that I am not even aware of.
We took Evelyn to see the Pediatric Geneticist and the director of PedsCare today. We are now at three months and are entering a new stage, so we needed some advice about the future and what may come next.
We had last been there when she was 2 weeks old. At that time the understanding was that she did not have much longer to live. Now she has lived much longer than expected. This is due to all of Elizabeth's mothering and our support from PedsCare. Truly. The Pediatric Geneticist was clear that the only reason she is still alive is because of Elizabeth.
With the three month milestone behind us we look ahead to the next six months when she will be between three and nine months.
This is medically unchartered waters so it is difficult to know what to expect. As she becomes more active she may injure her wound and it will become infected. As her brain grows it may run out of room and she will fall into a sleep and stop eating and breathing. This is also the time when 60-70% of kids manifest seizures which would interfere with her ability to breath.
So these are the things that are likely ahead. She will always be severely handicapped for the remainder of her life which may be as long as her first birthday.
In the meantime, for those of you who have met her, she is largely the same. She is getting very fat, likes to cooo and still smells good and is soft to kiss.
The boys love her so much it is wonderful.
She is a joy to have around.
We are all very happy and life is mostly normal.
Over then next few years we will thank everyone individually. Every day I could fill the daily postings with people who helped that particular day not to mention the people from Alaska to Okinawa to England and Iraq who pray for her everyday and that I am not even aware of.
Tuesday, June 21, 2005
Saturday, June 18, 2005
Tuesday, June 14, 2005
Sunday, June 12, 2005
Saturday, June 11, 2005
Thursday, June 09, 2005
Sunday, June 05, 2005
Saturday, June 04, 2005
Thursday, June 02, 2005
Beans on Julian
No new pictures today. Just busy taking Julian to the ER to get the bean out of his nose!
Wednesday, June 01, 2005
Monday, May 30, 2005
Saturday, May 28, 2005
Thursday, May 26, 2005
Subject: Mover and shaker
I found Evelyn on our bed with her head towards the footboard and a foot away from the boppy. I think it's time to pull out the pack and play.
Wednesday, May 25, 2005
Monday, May 23, 2005
Saturday, May 21, 2005
Thursday, May 19, 2005
This week.
This week has been very good. Evelyn has not had any agitation or seizures.
She is putting on weight and has lots of fat rolls. We took her Timothy's graduation from preschool yesterday.
She is putting on weight and has lots of fat rolls. We took her Timothy's graduation from preschool yesterday.
Tuesday, May 17, 2005
Monday, May 16, 2005
Sunday, May 15, 2005
Saturday, May 14, 2005
Update
It is a beautiful Saturday here.
Things are quiet.
We are having lots of time together.
Evelyn is getting bigger every day.
The agitation we now believe are seizures.
They only last seconds and then she gets sleepy.
We are off to Dairy Queen as a treat from the Domes in New York.
Things are quiet.
We are having lots of time together.
Evelyn is getting bigger every day.
The agitation we now believe are seizures.
They only last seconds and then she gets sleepy.
We are off to Dairy Queen as a treat from the Domes in New York.
Friday, May 13, 2005
Friday
We are all home today. The kids go to Mom's Morning Out at church this morning. I do not have to go to work. We are going to find something fun to do this afternoon.
Evelyn is a little more aggitated lately. We started her on scheduled tylenol yesterday and that worked through the evening. Last night we tried tylenol with codeine and it made little to no effect. As a result she rested on my chest from the time I got home at 4:40 until 11:40 with the exception of 45 minutes around dinnertime. That was nice.
Evelyn is a little more aggitated lately. We started her on scheduled tylenol yesterday and that worked through the evening. Last night we tried tylenol with codeine and it made little to no effect. As a result she rested on my chest from the time I got home at 4:40 until 11:40 with the exception of 45 minutes around dinnertime. That was nice.
Thursday, May 12, 2005
Sunday, May 08, 2005
Saturday, May 07, 2005
We had lots of babies in the house today!
Today Elizabeth had her second Bradley class reunion.
Babies everywhere, little ones, with first time parents.
If I get a group picture of all the babies I will be sure to put it here.
Aunt Pat and Grandmother checked in from Allentown today by phone. We haven't spoken to them in far too long!
Timothy assisted with a goal in his soccer game. He grins ear to ear as he runs carefully at the back of the pack, being sure never to get TOO close to the soccer ball.
Of course, his cheerleader, Julian was there to cheer him on... ahem... actually see if there were any left over snacks at the end of the game for him to eat!
Timothy and Julian have been playing outside all afternoon. Poking fire ant hills and the like. We picked up another 100 pounds of sand, so their sandbox is nearing the 1/2 ton mark!
Babies everywhere, little ones, with first time parents.
If I get a group picture of all the babies I will be sure to put it here.
Aunt Pat and Grandmother checked in from Allentown today by phone. We haven't spoken to them in far too long!
Timothy assisted with a goal in his soccer game. He grins ear to ear as he runs carefully at the back of the pack, being sure never to get TOO close to the soccer ball.
Of course, his cheerleader, Julian was there to cheer him on... ahem... actually see if there were any left over snacks at the end of the game for him to eat!
Timothy and Julian have been playing outside all afternoon. Poking fire ant hills and the like. We picked up another 100 pounds of sand, so their sandbox is nearing the 1/2 ton mark!
Thursday, May 05, 2005
Links
for RSS Readerhttp://home.bellsouth.net/p/pwp-bowes for our Webpage.
www.boweses.blogspot.com Bowes Photo Blog.
Wednesday, May 04, 2005
Tuesday, May 03, 2005
Month #2
Hi.
I have been hearing from a lot of people that Evelyn is getting bigger. It is hard to tell when you see her everyday. She must be over 8 pounds, so she is bigger than average.
Grandma left this morning. It was fun having her around. I think the kids will need the dentist now that she is gone. Julian's favorite word is 'treat?'.
Evelyn is doing the same. Since she is the only girl in the family and who knows for how long, she gets to wear new outfits all the time. Her church clothes this past Sunday were particularly cute.
I have been hearing from a lot of people that Evelyn is getting bigger. It is hard to tell when you see her everyday. She must be over 8 pounds, so she is bigger than average.
Grandma left this morning. It was fun having her around. I think the kids will need the dentist now that she is gone. Julian's favorite word is 'treat?'.
Evelyn is doing the same. Since she is the only girl in the family and who knows for how long, she gets to wear new outfits all the time. Her church clothes this past Sunday were particularly cute.
Sunday, May 01, 2005
Saturday, April 30, 2005
Friday night
We had a nice visit this evening from Kristi and Debbie who brought by a wonderful photo of Evelyn and a framed My Child letter of Biblical quotes. The matting is signed by all sorts of wonderful people.
Dr. McGee, who is an ophthalmalogist, came by this evening and evaluated Evelyn's eyes. This was by the geneticists request. The exam was normal which suggests that there is no genetic link.
Nice warm day. It is a joy to have Grandma Dugan around.
Off to T. Nelson's soccer game in the morning.
Dr. McGee, who is an ophthalmalogist, came by this evening and evaluated Evelyn's eyes. This was by the geneticists request. The exam was normal which suggests that there is no genetic link.
Nice warm day. It is a joy to have Grandma Dugan around.
Off to T. Nelson's soccer game in the morning.
Friday, April 29, 2005
Thursday, April 28, 2005
RSS Feed
Hi. You can add the links below to a RSS Newreader like Pluck or FeedReader or even to My Yahoo!
Click on the link to add or cut and paste into your Newsreader.
RSS:
http://feeds.feedburner.com/EvelynAdeleBowes
Click on the link to add or cut and paste into your Newsreader.
RSS:
http://feeds.feedburner.com/EvelynAdeleBowes
Wednesday, April 27, 2005
A Wednesday ... Day #?
Well 3 1/2 weeks have gone by.... April comes to a close.
I am surprised because everything is EXACTLY the same. I am not sure Evelyn was expected to live this long, but no one really knows.
So what is life like? A typical day?
Elizabeth is basically homebound. Due to Evelyn's wound a car seat is not an option and any other alternative would leave her lying on her belly on the floor of the car.....
So... Tiffany and Kathy take the kids back and forth to preschool on Monday through Wednesday and Denise or another wonderful person takes them to Church School on Friday mornings. Saturday mornings are soccer games. And Sunday is the big outting when Evelyn sits on Elizabeth's lap and we drive the short distance to church.
Elizabeth and Evelyn are alone after breakfast most days until 1:15pm and typically some one will come for a visit by late morning, usually a friend and sometimes someone from PedsCare.
Afternoons are typically filled by either Alison coming and playing with the boys or two different Hospice volunteers each come weekly and play with the kids late afternoon.
I usually get home between 3:30 and 5:30 pm. Timothy has soccer Tuesday and Thursday nights.
At times there is a hypersensitivity about, "Is she fussier than usual" "Is she sleeping more than usual?" "Is she eating less?" "Is she the same today as yesterday?" Which always brings the reality back right to the pit of your stomach. Then you kiss her fat cheek and the rest of your worries melt away....
I am surprised because everything is EXACTLY the same. I am not sure Evelyn was expected to live this long, but no one really knows.
So what is life like? A typical day?
Elizabeth is basically homebound. Due to Evelyn's wound a car seat is not an option and any other alternative would leave her lying on her belly on the floor of the car.....
So... Tiffany and Kathy take the kids back and forth to preschool on Monday through Wednesday and Denise or another wonderful person takes them to Church School on Friday mornings. Saturday mornings are soccer games. And Sunday is the big outting when Evelyn sits on Elizabeth's lap and we drive the short distance to church.
Elizabeth and Evelyn are alone after breakfast most days until 1:15pm and typically some one will come for a visit by late morning, usually a friend and sometimes someone from PedsCare.
Afternoons are typically filled by either Alison coming and playing with the boys or two different Hospice volunteers each come weekly and play with the kids late afternoon.
I usually get home between 3:30 and 5:30 pm. Timothy has soccer Tuesday and Thursday nights.
At times there is a hypersensitivity about, "Is she fussier than usual" "Is she sleeping more than usual?" "Is she eating less?" "Is she the same today as yesterday?" Which always brings the reality back right to the pit of your stomach. Then you kiss her fat cheek and the rest of your worries melt away....
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