One month.
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....
Tuesday, April 26, 2005
Sunday, April 24, 2005
Medical Update & Summary
Evelyn is home with hospice care.
The hospice nurse comes every other day and makes sure we are doing OK, that we have medical supplies and anything else we might need.
The parietal encephalocele is a rare defect. The experts recommended against surgery. They can not fix it and may worsen things. The genetics doctor does not think this is inherited but a spontaneous happening. The best guesses of the pediatric neurosurgeon, neonatologist and pediatric geneticist that she will likely live between 3 and 6 weeks, maybe longer.
Her only special care is the bandage changes on her head. She is very quiet so we are concerned to make sure she is comfortable, but she does get irritated at time, so we are reassured that we will know when she is hurting.
She wakes up to eat, but mostly sleeps all the time and very rarely cries.
The boys enjoy loving her and helping.
She is cute, soft and cuddily.
She is well loved~!
The hospice nurse comes every other day and makes sure we are doing OK, that we have medical supplies and anything else we might need.
The parietal encephalocele is a rare defect. The experts recommended against surgery. They can not fix it and may worsen things. The genetics doctor does not think this is inherited but a spontaneous happening. The best guesses of the pediatric neurosurgeon, neonatologist and pediatric geneticist that she will likely live between 3 and 6 weeks, maybe longer.
Her only special care is the bandage changes on her head. She is very quiet so we are concerned to make sure she is comfortable, but she does get irritated at time, so we are reassured that we will know when she is hurting.
She wakes up to eat, but mostly sleeps all the time and very rarely cries.
The boys enjoy loving her and helping.
She is cute, soft and cuddily.
She is well loved~!
Saturday, April 23, 2005
Day 21.
Hi.
Week in review.
Things move along here.
-This week we have had a few hospice volunteers and they have been amazing.
-The hospice nurses are wonderful and are very generous listeners (they have even run errands after hours and in some cases with their own families).
-Now that Mom has been home since Sunday people are beginning to bring food and that has been a huge help (and yummy!)
-Friends are being very generous in transporting Timothy and Julian to preschool.
-We have had lots of caring visitors which is nice and often they bring kids with them so the boys have had playmates.
The outpouring of help has been such a God send!
Week in review.
Things move along here.
-This week we have had a few hospice volunteers and they have been amazing.
-The hospice nurses are wonderful and are very generous listeners (they have even run errands after hours and in some cases with their own families).
-Now that Mom has been home since Sunday people are beginning to bring food and that has been a huge help (and yummy!)
-Friends are being very generous in transporting Timothy and Julian to preschool.
-We have had lots of caring visitors which is nice and often they bring kids with them so the boys have had playmates.
The outpouring of help has been such a God send!
Thursday, April 21, 2005
Nothing new.
How about that?! First day without anything to report.
Evelyn is sleeping.
Timothy and Julian are outside playing the age old "Bowes with a hose" game and soaking everything in site.
I am back at work. I came home today and couldn't even get in the driveway because of all the cars!
Life is good.
Evelyn is sleeping.
Timothy and Julian are outside playing the age old "Bowes with a hose" game and soaking everything in site.
I am back at work. I came home today and couldn't even get in the driveway because of all the cars!
Life is good.
Wednesday, April 20, 2005
Day 18
Off to see the geneticist this morning. He said that there appeared to be no genetic inherited problem and that Evelyn's disease was chance.
Evelyn has been trying lots of new girl outfits which she has been given!
Evelyn has been trying lots of new girl outfits which she has been given!
Tuesday, April 19, 2005
Monday, April 18, 2005
A Debt of Gratitude.
We just received the most wonderful call.... from Iraq.
Dr. Yevsey Goldberg called from Fallajah to speak with us and sent his heartfelt thoughts and prayers.
I was happily able to tell him that Evelyn was asleep on my chest. Sensitive to him missing his own son, I was able to thank him for being there and affording me the ability to be with my family at this important time.
He is over there, as many are separated from their family, in harms way and his concern is for us and Evelyn.
The outpouring never ceases to amaze us!
Dr. Yevsey Goldberg called from Fallajah to speak with us and sent his heartfelt thoughts and prayers.
I was happily able to tell him that Evelyn was asleep on my chest. Sensitive to him missing his own son, I was able to thank him for being there and affording me the ability to be with my family at this important time.
He is over there, as many are separated from their family, in harms way and his concern is for us and Evelyn.
The outpouring never ceases to amaze us!
A New Week.
Evelyn remains about the same. She has some nice photos taken by Elizabeth Hague last night. She prefers to sleep in her boppy.
The kids are off to school today and wonderful friends are volunteering to carpool them back and forth.
Other friends are starting to provide meals this week (after the Engelbrecht's wonderful food lasted forever!).
The kids are off to school today and wonderful friends are volunteering to carpool them back and forth.
Brian is back at work today while the kids are at school.
Other friends are starting to provide meals this week (after the Engelbrecht's wonderful food lasted forever!).
Sunday, April 17, 2005
Normal?
Life almost seems normal now.
We all made it to church. Mommy and Evelyn napped in the afternoon, while the boys played outside, gardened and made crafts in the garage.
The house feels really empty, but it is nice having the 5 of us and feeling almost normal again for the first time in what seems like an eternity.
We all made it to church. Mommy and Evelyn napped in the afternoon, while the boys played outside, gardened and made crafts in the garage.
The house feels really empty, but it is nice having the 5 of us and feeling almost normal again for the first time in what seems like an eternity.
Day 15
Sunday two weeks later. Sense of time is not what it used to be. The last two weeks have gone quickly yet been an eternity.
Mom Dugan and Allison left this morning at 630am, now it is just us.
Julian is demanding french toast, so life must be getting back to normal.
Time to short order cook!
Mom Dugan and Allison left this morning at 630am, now it is just us.
Julian is demanding french toast, so life must be getting back to normal.
Time to short order cook!
Saturday, April 16, 2005
Friday, April 15, 2005
Visitors
We had a nice visit today with Debbie H., Elizabeth M., Denise C. and Debra T.
Aunt Allison made it here safely from Annapolis and we finally got to talk with Uncle Chris (Julian's Godfather) from Palo Alto!
How wonderful it is to see all the emails, blog comments and wonderful sentiments being sent our way!
Thanks!
Aunt Allison made it here safely from Annapolis and we finally got to talk with Uncle Chris (Julian's Godfather) from Palo Alto!
How wonderful it is to see all the emails, blog comments and wonderful sentiments being sent our way!
Thanks!
Day 13
Life is finding a rhythm.
Evelyn has been exactly the same all week. She sleeps a lot and when she is not sleeping she is eating ... a lot.
It is fun to get her out of the basinet in the morning and let her sleep on your chest for a little while. (It is also an excuse to stay in bed!)
Evelyn has been exactly the same all week. She sleeps a lot and when she is not sleeping she is eating ... a lot.
It is fun to get her out of the basinet in the morning and let her sleep on your chest for a little while. (It is also an excuse to stay in bed!)
Thursday, April 14, 2005
Visitors!~
We are starting to have visitors. Great Aunt Evie and her daughters Christine and Lori are coming today.
Brian feels the need to get back to work so we will be getting extra hospice volunteers.
Timothy and Julian love to play games with Grandma.
Brian feels the need to get back to work so we will be getting extra hospice volunteers.
Timothy and Julian love to play games with Grandma.
Day 12 -- Cooing
It is difficult to go to bed at night not knowing if she will be alive in the morning.
But it is a wonderful feeling to awaken in the morning and hearing her squeaks coming from the basinet.
But it is a wonderful feeling to awaken in the morning and hearing her squeaks coming from the basinet.
Wednesday, April 13, 2005
Day 11 Prayer Service
* There will be a prayer service for Evelyn at St. Catherine's on 13 April at 7pm.
Tuesday, April 12, 2005
Week 2 Tuesday
Tuesday 4/12 Adjusting to 24 hours at home. PedsCare Hospice nurses are great. Unfortunately the IV never worked and her antibiotics go straight into the muscle twice a day.
Brother Steve and Juliana left today.
Mom Dugan still here. House is getting quieter.
Timothy understands all and is doing well. Julian doesnt understand and his behavior is more needy.
Brother Steve and Juliana left today.
Mom Dugan still here. House is getting quieter.
Timothy understands all and is doing well. Julian doesnt understand and his behavior is more needy.
Monday, April 11, 2005
Future?
Who knows how much time we have, we are told between 4 and 30 days. But she is such a joy to hold we are going to take every opportunity to be with her so all 5 of us can be together.
Friday, April 08, 2005
East and West Coast Boweses arrive
Brian's Dad flew in from New York and his brother Steve and wife Juliana (7 months pregnant!) flew in from San Francisco.
Day 6 Clarity
We decide to arrange for hospice care at home.
This can not take place until after the weekend.
Everyone at the hospital is wonderful. Especially nurse Amanda.
This can not take place until after the weekend.
Everyone at the hospital is wonderful. Especially nurse Amanda.
Thursday, April 07, 2005
Day 5 Decisions
Surgery is postponed. We read the surgeon as thinking it was futile and the neonatalogist's opinion is that Evelyn would not survive surgery.
Wednesday, April 06, 2005
Day 4
Final meeting in Dr. James' office.
Became excited about organ donation as we could help 11 other children.
Dr. Lim the neonatalogist tells us this is not in option in a baby so young.
Drs. Herman visit.
Became excited about organ donation as we could help 11 other children.
Dr. Lim the neonatalogist tells us this is not in option in a baby so young.
Drs. Herman visit.
Tuesday, April 05, 2005
Day 3
Met with Dr. Lim who was very concerned about Evelyn's outcome.
This was reiterated by Dr. James.
This was reiterated by Dr. James.
Subscribe to:
Posts (Atom)