Evelyn Adele Bowes

2006-03-17T16:49:00.000-05:00

Thanks.

2006-03-17T10:37:00.000-05:00

Dear Friends and Family,

Thank you for all of your love and support of our family and especially of Evelyn over the past year.

Knowing how many people checked Evelyn's website as part of their life's routine always brought great comfort.

This site will remain as is. I redirect you to our family webpage where I will start posting new photos today and adding to the archive.

Thanks again for all of your support. Please continue to remember my little girl, Evelyn Adele.

Love,
Brian, Elizabeth, Timothy and Julian

Click here for the Bowes' main family site

http://boweses.blogspot.com/

Day 341

2006-03-10T12:30:00.000-05:00

Evelyn Adele died peacefully at home in my arms this morning at 2:30am with Elizabeth by my side.

She will be greatly missed but ultimately were are joyous for her.

Thanks to absolutely everyone for your thoughts, concerns and prayers over these 11 months.

Love, Brian, Elizabeth, Timothy and Julian
bnbowesmd@pol.net

A letter from Timothy

2006-03-10T12:21:00.000-05:00

2:30am
March 1oth

Dear Evelyn,
I hope you have a good time in heaven. I always wanted you to live as long as you could. I want you to be my guardian angel. I love you so much.
Timothy

Funeral arrangements

2006-03-10T12:03:00.000-05:00

Visitation (closed casket) will be on Sunday from 2-4pm at Jacksonville Memorial Gardens Funeral Home, 111 Blanding Blvd (by Orange Park Mall).

Mass of Christian Burial will be 10:30am Tuesday at St. Catherine Catholic Church, 1649 Kingsley Avenue, Orange Park.

Please join us.

In lieu of flowers, we are accepting donations to Community Hospice Foundation to support Community PedsCare.

2640 Country Club Blvd.
Orange Park, Fl 32073

Evelyn

2006-03-10T11:53:00.000-05:00

Please continue to keep our little Evelyn in your prayers.

A slow decline

2006-03-09T14:46:00.000-05:00

Evelyn is having more seizures now.
She can only take a small amounts of liquid without choking.

She is still as sweet as ever.
PedsCare continues to be wonderful to our family.

Thanks for checking in and for all your thoughts and prayers.

Wonderful garment made in Alaska!

2006-03-06T06:15:00.000-05:00

11 months

2006-03-02T23:22:00.000-05:00

It has been a while since I left a status report.

Evelyn is the same little girl, now skinnier.

Medical update: She has always had difficultly eating.
Last month I intended to post an update as her weight dipped to 12 lbs 9 oz.
She had previously been 14+ lbs. Today her weight is down to 11 lbs 12 oz.
We have discovered that she likes vanilla custard, so maybe we can fatten her up a bit with that!

We are all in good spirits. The boys are doing great. Elizabeth is very
well and very busy teaching and taking classes about childbirth.

Thanks for checking in.

334 days or
* 28,857,600 seconds
* 480,960 minutes
* 8,016 hours
* 47 weeks

Sweet Evelyn!

2006-02-25T23:22:00.000-05:00

Evelyn Adele's Valentine's lollipop!

2006-02-15T18:52:00.000-05:00

TEETH!!!

2006-02-11T19:17:00.000-05:00

Grandma Dugan came today for two weeks to help out.
Elizabeth starts her annual Navy training, so she will be going to work for the next two weeks.

Evelyn broke her first tooth through today, just to show off for Grandma!

Evelyn with her Great Grandmother

2006-02-09T23:41:00.000-05:00

Day #302

2006-01-29T20:02:00.000-05:00

Or 9 months, 27 days
* 7,248 hours
* 43 weeks

Well here we are... 302 days. Who would have known. The reality struck Elizabeth and I when we looked at each other during the New Year. 2005 was the year of Evelyn and here she is still with us in 2006!

Things are largely unchanged. She is still an infant. Sleeps a lot. Makes little noise. Doesn't really cry. Doesn't roll over et cetera.

The last 2 months there does seem to be some awareness of her family. She fusses if we aren't with her which means she gets her way (of course) and is in bed with us lately. We can also get her to react to verbal stimulation and she will smile a bit.

She eats a good amount somedays and hunger strikes the next. Lately she has been having fevers but who knows if that is teething or an infection.

So it is still one day at a time. Most days just repeat themselves, but that is fine. We are in good spirits and thoroughly enjoy our little family.

Thanks to everyone near and far for their support, concerns, prayers, car pools, phone calls .....

Brian & Elizabeth

Our email address click here.

My Navy Cheerleader outfit

2006-01-16T15:14:00.000-05:00

2006-01-16T15:11:00.000-05:00

With Uncle Chris

2006-01-16T15:10:00.000-05:00

Evelyn at her friend Lydia's first birthday party!

2006-01-08T13:12:00.000-05:00

Playing with Mommy

2005-12-30T14:01:00.000-05:00

2005-12-30T13:59:00.001-05:00

2005-12-30T13:59:00.000-05:00

My first Christmas Eve.

2005-12-24T12:31:00.000-05:00

Merry Christmas from the Bowes Kids!

2005-12-24T10:22:00.000-05:00

"Mommy I can't believe it
she is going to make it to
Christmas....
her first Christmas!"

-Timothy

Evelyn and Jeanne

2005-12-21T15:05:00.000-05:00

Evelyn with her Hospice
Nurse Jeanne!

Elizabeth, Evelyn and Timothy during the Navy-Army Games

2005-12-10T09:34:00.000-05:00

Evelyn watching football with Daddy

2005-12-04T22:32:00.000-05:00

246 days

2005-12-04T22:12:00.000-05:00

Or 8 months, 2 days

21,254,400 seconds
354,240 minutes
5,904 hours
35 weeks (rounded down)

PedsCare

2005-11-29T22:20:00.000-05:00

Our family has really benefitted from the Community Hospice. Think about getting involved in Jacksonville or in your neck of the woods.

Get informed
https://www136.ssldomain.com/communityhospice/getinformed/index.htm

Get involved
https://www136.ssldomain.com/communityhospice/getinvolved/index.htm

Happy Thanksgiving!

2005-11-24T14:34:00.000-05:00

2005-11-22T17:58:00.000-05:00

Red Fridays

Evelyn

2005-11-19T08:30:00.000-05:00

Mommy and Me.

2005-11-07T19:03:00.000-05:00

2005-11-07T17:28:00.001-05:00

Looking cool!

2005-11-07T17:28:00.000-05:00

Evelyn at Disney World.

2005-11-04T16:42:00.000-05:00

Kids with Halloween loot.

Update day 215, 7 months 1 day.

2005-11-03T17:10:00.000-05:00

Hi!
We recently had wonderful visits from Granddad Bowes, GreatGranddad Hohmann and Grandma Dugan.

Evelyn is as sweet as ever. She eats, sleep and continues to grow.
The boys continue to dote on her.

The spot on her head is looking worse. It is getting big as she is getting bigger. Do not know if this means anything. Just reminds us we are on borrowed time.

As Hospice say, "each day is a blessing".

That's, the update. Thanks for checking in. Keep us in your prayers.

2005-10-30T18:50:00.001-05:00

Evelyn and Great Granddad enjoying Saturday brunch.

2005-10-30T18:50:00.000-05:00

Evelyn and Great Granddad

2005-10-30T18:49:00.000-05:00

Evelyn enjoying her first and favorite solid food... pears!

For the latest family photos check....

2005-10-22T08:36:00.000-04:00

Brian's family web site

Steve's family web site

2005-10-15T21:17:00.000-04:00

Here are the boys with their sister at Doors N More.

2005-10-15T21:16:00.000-04:00

Here is Evelyn with Belle and Donna her social worker at the Doors N More PedsCare charity fundraiser tonight! Fun was had by all!

Wide Eyes!

2005-10-08T21:22:00.000-04:00

Evelyn's TV debut

2005-10-03T19:43:00.000-04:00

News 4 Jacksonville interviewed us yesterday at Hospice of Jacksonville to help promote PedsCare. Evelyn's story was shown on the 10pm and 5am news. They did a nice job.

Links to Hospice of Jacksonville:
Donations
Volunteer
Get Involved

2005-09-29T17:53:00.000-04:00

Evelyn and her PedsCare nurse Jeanne.

2005-09-28T17:54:00.000-04:00

Evelyn is having subtle little seizures. She may have had them for sometime they are just so slight that they were not noticeable for a while.

2005-09-24T07:15:00.000-04:00

I am a turtle.

2005-09-24T07:14:00.000-04:00

Trying on Halloween outfit.

Day 174 or 5 months 3 weeks update

2005-09-23T19:18:00.000-04:00

15,033,600 seconds
250,560 minutes
4,176 hours
24 weeks

Hi.
Evelyn continues to grow and follow the growth curve. She is getting quite heavy to hold. People comment that she is small or they expect her to be bigger, but it is just because her head is small.

Developmentally she has not advanced past a newborn. She eats and sleep. We have been told she is blind but when you get close she knows you are there, that may be that she can see shadows or simply that she can feel your warmth or smell you or feel your breath. She does not socially interact. She will coo and if you tickle behind her shoulder blade some days you can get her to smile.

It is wonderful how her lack of development changes nothing. People are very sensitive and kind. She is a joy to have and a nice addition to our family.

2005-09-19T16:02:00.000-04:00

Recent

2005-09-17T19:44:00.000-04:00

Timothy and Evelyn

2005-09-14T19:41:00.000-04:00

Asleep on the table!

2005-09-12T07:45:00.000-04:00

Tickle, tickle.

2005-09-05T21:21:00.000-04:00

Smiles!

2005-09-03T16:22:00.000-04:00

Enjoying Timothy.

Day 152: Doctors' visit.

2005-09-01T16:51:00.000-04:00

We had our second visit with the geneticist on Thursday.
Evelyn continues to grow. She is longer and heavier. Just about 14 pounds.
At some point something will trigger her decline but they do not know when that will be or how so meanwhile we continue to enjoy her presence in our family.

Bath time with Jeanne!

2005-08-30T22:40:00.000-04:00

Family Beach photo

2005-08-27T22:24:00.000-04:00

Us at the beach.

Older photo, but still cute.

2005-08-22T22:23:00.000-04:00

Getting her feet wet.

2005-08-19T17:24:00.000-04:00

With Mommy.

2005-08-17T22:23:00.000-04:00

With Mommy and Daddy.

2005-08-15T22:23:00.000-04:00

Evelyn and her brothers.

Eyes wide open. 19 weeks.

2005-08-14T15:00:00.000-04:00

2005-08-07T10:34:00.000-04:00

Snack time.

Movie

2005-07-30T17:04:00.001-04:00

Click here for Evelyn at the beach!

2005-07-30T17:04:00.000-04:00

Playing with her stuffed animal.

Day 115

2005-07-26T20:44:00.000-04:00

Life is settling down now as the St. Augustine beach vacation is over. The Bowes family is very grateful to Elizabeth's parents for allowing us all to have fun at the beach and share our time together.

Baby Evelyn is back in her normal surroundings. Surrounded by her brothers, their kisses and silly faces.

Evelyn has grown quite big in the past four months. It is wonderful to see. She has a dimple on the left cheek and if you kiss it just right it shows. She is still wonderfully easy to care for and a pleasure, although she is getting more difficult to feed.

Our PedsCare nurse continues to be a treasure and we are wonderfully thankful for their support and the terrific healthcare the Navy provides for us.

Thanks for checking up on Evelyn and our family!

2005-07-22T19:38:00.000-04:00

Evelyn

2005-07-21T00:38:00.000-04:00

Sleeping at the beach

Some Family

2005-07-17T22:36:00.000-04:00

Grandpa Dugan

Kathryn Hantske

Evelyn

Julian and Evelyn

2005-07-13T20:45:00.000-04:00

Don't they look related!

Beach vacation

2005-07-13T20:41:00.000-04:00

Hi!
We are at the beach in St. Augustine this week and next with the Dugan family. Sister Lisa from Alaska and her kids as well as sister Allison from Annapolis and her kids are here.
More family will be coming in over the weekend and we are having a blast!

2005-07-09T13:45:00.000-04:00

Happy times with Aunt Lisa

2005-07-07T12:09:00.000-04:00

Sleepy and 13 pounds!

Sophia Bowes July 5th 8#2ounces 21 1/2 inches

2005-07-06T14:37:00.000-04:00

Click here for pictures of Sophia!

2005-07-02T15:30:00.000-04:00

Evelyn is 13 pounds!

2005-06-28T23:46:00.000-04:00

new picture!

2005-06-24T21:19:00.000-04:00

Sleepy time.

Three month mark.

2005-06-23T18:09:00.000-04:00

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.

2005-06-21T20:52:00.000-04:00

Almost 12 weeks, almost 12 pounds! (11 pounds 15 ounces) Happy Summer!

2005-06-18T14:59:00.000-04:00

Fun visit with Aunt Lisa!

2005-06-18T02:12:00.000-04:00

Friday.

2005-06-14T17:58:00.000-04:00

Car seat! Yea! Thank you PedsCare!

2005-06-12T22:18:00.000-04:00

Sunday before Grandma leaves.

2005-06-11T09:30:00.000-04:00

Saturday's outfit.

2005-06-09T18:50:00.000-04:00

Just taken.

Weigh in!

2005-06-09T17:29:00.000-04:00

10 pounds 11 ounces!

2005-06-05T19:21:00.000-04:00

Getting chubby, almost 11 pounds!

2005-06-04T15:06:00.000-04:00

Bouncy chair.

Beans on Julian

2005-06-02T22:36:00.000-04:00

No new pictures today. Just busy taking Julian to the ER to get the bean out of his nose!

2005-06-01T16:35:00.000-04:00

The kids! Happy June.

2005-05-30T00:09:00.000-04:00

First smile!

Click here to Email Us!

2005-05-28T21:49:00.000-04:00

2 months. 10 pounds, 4 ounces

2005-05-26T23:23:00.000-04:00

Subject: Mover and shaker

2005-05-26T15:30:00.000-04:00

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.

2005-05-25T14:50:00.000-04:00

Evelyn

2005-05-23T19:45:00.000-04:00

Evelyn with Mommy

2005-05-23T19:38:00.000-04:00

Evelyn

2005-05-21T10:39:00.000-04:00

Pucker up!

9 pounds 10 1/2 ounces!

2005-05-19T20:42:00.000-04:00

6 weeks and 4 days old.

(46 days old)