Journeys with Jamie

Happy Birthday to Us!

2011-02-10T07:37:00.000-06:00

Has it really been over a month since I've posted anything? Oh my...I'm such a slacker!! I have things to say and pictures to post, just haven't posted for all to see!

Today's post is to celebrate the birthday of my sweet daughter and I.
-- 34 years ago today, at 11:45am, I was born.
-- 8 years ago today, at 12:08pm, Amanda was born.

It's a special day that I am blessed to celebrate every year. A day that I can reminisce about the pregnancy that led up to this day. The worry, wonder, and excitement. Awaiting for her arrival, was peaceful yet intense -- I'll never forget the feelings I had after she was born. She was ok with perfect 10 Apgar scores, I was crying tears of joy!

It's also a time to reminise about the last 8 years...

Last week it was her turn to be a celebrity at school. It was all about her. One assignment during the week was for us to write a letter to her which would be read to the class.

I sat there with a blank screen wondering what the heck to say! I decided to focus on our special day as it just seemed fitting with it right around the corner.

Due to the wonderful weather we had last week (not), Celebrity week was postponed to this week since school was closed for 4 days.

Her teacher read the letter and they all laughed and said that was the best one yet as nobody else had pictures included! I imagine she was grinning from ear to ear!

Since today is the day, I thought I'd share what I wrote to her and riminense (again) about the 8 wonderful years I've had with her so far!

Enjoy!

{Project Life} Birthday Card - Created by Amanda

2011-01-06T19:36:00.004-06:00

I've slated Thursday nights as project night with Amanda for us to work on Project Life together (I promise...more is coming for her little book soon!) Anyways...

Tonight we digressed a little as tomorrow is her teachers birthday, so we first sat down to create a card for her.

As I sifted through the overflowing supply of scrapbook 'stuff' that's been collecting dust, I passed right by the 'perfect' embellishment. But...Amanda's eye caught it and said "Mommy, wait!...that's perfect!" and she proceeded to look back through the stack I had placed in the 'nah' pile.

When she found it, she held it up and exclaimed "See...LOOK! It's a Dragon with a birthday hat Mom and it says Happy Birthday...duh...Daulton Dragons!" (school mascot)

Oh my...yes my dear daughter of mine, you are right...that is perfect.

So she decorated and I captured the moment...she even had the creative idea to place music notes above the mice playing the trumpet and she was SO proud of herself!

The point to the story...stop trying to do for them and just let them do for themselves...they are growing up and mom's don't always have the 'perfect' idea for creativity. Lesson learned!

And...I put this same collage of pictures in the card for her teacher...the perfect gift!

{Project Life} Just Another Reason Why

2011-01-06T13:21:00.006-06:00

This is so inspiring! Can you imagine finding something like this? Can you imagine if the images you're taking today had a similiar impact on those around you?

Street Photographer’s Work Discovered A Few Days After Her Death
Vivian Maier’s street photography was recently “discovered” just a few days after she died at the age of 83. The Chicago nanny took over 100,000 photographs and many say she may rank among the top street photographers of the 20th century.

(Source)

Consider this...not only should we take the pictures and store them for safe keeping, we should be sharing the stories that go along with them. Project Life is the easy way to accomplish this. If you aren't a scrapbooker, that's OK! All you need is pictures, a pen (or a keyboard), and a story to tell.

Would you rather send future generations (of your family perhaps) on a wild goose chase to learn more about you so that they had a deeper undestanding of who they are and where they came from, or would you rather tell the story in your own words so they aren't left wondering?

This is your story...your legacy...how will you choose to leave it behind for those that follow you? Will you leave it locked up on a hard drive or have stacks of photo albums somewhere without any names or stories to go with them?

Just some food for thought...

Note: The paper version of the Project Life kits are currently sold out...more are on the way and should be available in a few weeks! There is also a digital version available.

And no, I'm not affiliated with Project Life other than the fact I love and support the idea!

{Project Life} Pursuit of Data Recovery

2011-01-05T12:30:00.004-06:00

As I reflect on the eve of what would have been Brianna's 9th birthday, I'm reminded of a careless mistake I made in November 2005.

I was so caught up with what was going on with Jacob, (at least that was July onwards, can't remember the reason prior to that) I neglected to backup my hard drive from March until October/November of that year. The drive became non-bootable, unrecognizable. Most likely a mechanical failure.

You can imagine the heartbreak I instantly acquired:

6-8 months of Amanda's life in pictures...gone
Pregnancy pictures of Jacob...gone
All of Jacob's life...gone (I was saved slightly on this one as a result of this blog. Documenting his life frequently in an online form provided me a backup of his precious images. Granted, it's not all of them, but it's at least some of them. If I didn't have at least this I probably would have paid whatever price they gave me in 2005!)
Not to mention tax documents and whatever else was important at the time

I researched data recovery options in November 2005 and was told the cost would be somewhere between $500-$2700 with a minimum fee of $200 if the attempt was unsuccessful. Not something I really could afford at the time.

Almost 6 years have passed now and as I look back at pictures, I'm reminded of the gap. Being a person that is all about capturing life through pictures, well, this just tends to eat at me.

Now I can't even remember all the memories and moments of those months. What pictures did I take? What activities did we do? What memories have been lost?

Today, I dug up the hard drive and I searched for data recovery services (again). I found one local where I can drop the drive off and not worry about it getting lost in the mail.

I even found the original emails I had sent to the other company in 2005 detailing the directories on the drive I was most interested in (I was surprised I still had this!)

With the make/model/size of the drive in hand, I submitted an inquiry at www.securedatarecoverytx.com. They responded within 15 minutes by email as well as called me. This is what they said:

The analysis is free
Cost range is $500-$1700
They will provide a quote and I can decide to pursue or not. If I don't pursue at this time, the drive will be returned in tact and all I pay is $25

Ok...great!, I think. Maybe I can finally get the 'what if I can recover the data?' answered. But what happens if I can? Where do I come up with the funds to pay for it? How much are these pictures worth (priceless right?).

So then I'm stuck with knowing I can get my hot little hands on those memories again and not knowing how to pay for it and when. I've waited this long to get the answer, what's another year if I have to save for it, right?

Sigh...what can we all learn from this? Backup your important data! Being in the computer industry myself, you think I would have done that, however, life can get in the way for us geeky folks too sometimes and that's what happened to me.

So...do I make the attempt? Do I find out at least if it's possible or do I just wait some more...save some money and then figure it all out at once?

Knowing I can and not being able to get them now may be worse then just not knowing if I can!

{Project Life} Angry Birds

2011-01-05T09:14:00.003-06:00

“Angry Birds” Hits 42 Million Free and Paid Downloads (as of December 2010)

What is Angry Birds?
The survival of the Angry Birds is at stake. Dish out revenge on the green bigs who stole the Birds' eggs. Use the unique destructive powers of the Angry Birds to lay waste to the pigs' fortified castles. Angry Birds features hours of gameplay, challenging physics-based castle demolition, and lots of replay value. Each of the 210 levels requires logic, skill, and brute force to crush the enemy.

Angry Birds on the iPad is so much more fun! This is just one example of how we spend our free time! Have a minute...angry birds...have 10 minutes...angry birds. It's fun, it's addicting, and it causes you to 'arrgggg', 'shooottt', and yell back at the screen! Now that is liberating!!!

Apps in the iTunes store is just one of the advances in technology these days. How did we ever live without all this technology at our fingertips? I wonder what the next great invention will be?!?

{Project Life} Gun Show, Nintendo, and Project Life for Kids

2011-01-03T21:26:00.011-06:00

January 1 - Ken attended the gun show with Brian today...maybe he's coming home with a new toy...we'll see! I guess this is what happens when I buy him a years membership to a gun range! (verdict, he came home practically empty handed...just a mat to clean them...shew!)

January 2 - Blending the old and the new. Graphics and technology have come a long way since I played Super Mario Brothers on the original Nintendo, some 20 years ago! Watching Amanda play the 'old school' games really brought it into perspective for me!

January 3 - I wanted a way to include Amanda in the Project Life adventure as a means for us to have some quality time together doing something we both love...being creative. When I told her we were going to do a year long project together, her eyes beamed with excitement! Today we searched out the perfect album for her to capture her memories, a basic photo album to store the pictures until they make it into the perfect album and a few embellishments to go alone with it! She couldn't wait to get home and start on it right away...love her enthusiasm...it's contagious!
(I'll be sharing more ideas on how I'll be helping her achieve this goal soon...stay tuned!)

20 years later...2011

2011-01-01T11:07:00.002-06:00

It all began 20 years ago while I was on summer vacation in California visiting my mother. You see, my mother had a friend, Monica who had a son named Kenny. They thought it would be cute to have their 12 year old kids meet, so one night shortly after I arrived, we met at Sizzler and I was introduced to Kenny.

That first night at Sizzler

We were inseparable those 6 weeks I was there. We played Super Mario Brothers (the original!), watched The Little Mermaid a million times with my little sister and brother, pictures in a photo booth, and even went to Disneyland (where we were tortured into listening to "It's a small world" more times than I care to remember!

The photo booth

Disneyland

Those were carefree moments and we dreaded the day I'd go back home to Alaska. No matter how young we were at the time, the feelings were real. There were tears when I left and we had no idea if we would ever see each other again.

We kept in touch throughout high school, but eventually the phone calls and hand written letters to each other would dwindle away as we went about our daily lives. I never did see him again.

I went on to marry, divorce, marry, have 3 kids, divorce. He went on to marry, divorce, marry, have 3 kids, divorce.

20 years after that summer, we were reunited thanks to the technology, Internet, and a social network site - Facebook.

He had just a couple friends on Facebook as he had only joined the network recently. He started to think back through the years for others he could look for. He thought of me and when a search turned up empty, he started looking for my family...first my mother...nothing...then my sister and there, staring back at him was my name.

I imagine his heart skipped a few beats as he stared back while proceeding to write the first email message to me...

It was titled "Blast from the Past". I'll never forget the feeling I had as the message showed up on my phone. Seriously, I thought? After all these years...oh my heck!! I was giddy as the memories and feelings came back to me.

The "what ifs" started going through my mind.
- what if we had stayed in touch?
- what if we had lived closer all those years ago?
- what if the feelings we had then are still there?

We were reunited in the fall of 2009 and sparks went flying. We reminisced and shared hopes, dreams and just tried to catch up on lost time. We even took a new photo booth picture!

Photo booth

With the Uhaul packed, January 1st, 2010, Kenny and his buddy Richard started the long drive from Wever, Iowa to Grand Prairie, Texas. It was the beginning of a new adventure...one that should have continued all those years ago.

2010 brought us many challenges financially and emotionally, but despite it all we pushed on through and I'm very happy to have married my soul mate this year!

Our Wedding (more layouts to come soon!)

2011 is the continuation of our new beginning and in July, our first child together will be born into this world. I don't know what kind of trials we will face this year and in the years to come, but I do know having him by my side, holding my hand, makes it so much more bearable.

I wonder where we will be 20 years from now? What kind of life will we have shared? What dreams and goals will have been attained?

Time to go make more memories, beginning on this 1st day of January 2011.

Which brings me to a hobby I love so much but haven't taken the time for these last few years. I haven't felt creative or motivated to document my story, it was just too painful to relive the moments that were already stripping pieces away from me day by day.

I'm slowly regaining my passion and desire to share my story again...and it feels so liberating. I have a lot of catching up to do and I don't know how or where I'll begin, so I'll just have to dig in...stop procrastinating and stop thinking about how and just start doing!

So here's to 2011...to capturing the moments and sharing them as we go along so that we can reflect back on them anytime we want or need to. Here's to Project Life, just one way I'll be going about documenting our life this year.

I haven't blogged since May 2009 and I haven't scrapbooked in I don't know how long! To all those who used to enjoy my blog updates, well I'm back! You can look forward to many more this year as I restart my quest to capture the memories and spread the joy of scrapbooking and life!

The most beautiful gift I can leave behind for my loved ones is...my story...my legacy. It's one thing to live it, it's another to share it for future generations.

Happy New Year, from our house to yours! Here's to living life this year and documenting the stories both past and present.

The 1st Tooth is Out!!

2009-05-11T10:14:00.013-05:00

The story went something like this…

We had just arrived at the Macaroni Grill for dinner and Amanda started wiggling one of her 2 loose teeth.
“Mommy look, it’s really loose!”
“Wow”, I said. “You know what would be really cool? If you would pull that tooth out on Mother’s day, I would always remember when you lost your first tooth!”
(reached in, gave a yank, and out it came)
With eyes real wide, she looks amazed at her talents!
“MOMMY, IT’S OUT!!!” “I DID IT!!!”

She couldn’t stop talking about it, she was so excited she lost it on Mother’s Day!

When we arrived home, we carefully placed it in a container, and headed upstairs to bed. She placed on a plastic part of her headboard, so the pillow wouldn’t move it around too much! Once there, she sat on her knees and started clapping, smiling with so much happiness!

Fast forward to this morning…”MOMMY, the TOOTH FAIRY CAME!! She CAME MOMMY!! And guess what?!?!? She took my tooth and left me $5 dollars!!!!” (when did teeth become so expensive?!)

As she stands by my bed, she seems to be sad all of a sudden, so I ask “What’s wrong?”
“I want my tooth back”, she said
I started laughing, and said “that tooth is gone forever! Time for the next one!!”

The tooth fairies were giddy as they replaced her tooth with money, I told Kevin I was so happy we were both in town for this momentous occasion – so fun!

So there ya have it – enjoy the pics! The one of her eyes real wide is about the same look she had when she realized the tooth was between her fingers and the one where she is smiling wide reminds me of her reaction as she placed the tooth under her pillow.

Reflections

2009-02-27T08:21:00.004-06:00

Often times throughout our lives we lose sight of purpose. It's easy to do. We get caught up in our daily lives with the stress of our jobs, the duties of a wife & mother, and all the other roles we may play as we move along.

Recently, I've been doing some self reflection on my own life. There are so many things on my 'bucket list' that include both short term and long term goals:

* things I need or want to accomplish in my professional career
* make the household more efficient and organized
* spend more quality time with Amanda and be a better listener
* be more aware of finances
* healthier meals for the family
* get out of the house & meet people so this becomes more like home vs. a place I live
* travel more with Amanda both near & far so she can experience the world
* visit my long time friend Angela whom I haven't seen since I was a freshman in high school
* spend more time in the Word and allow God to lead the way
* me time -- where I can be creative, reflect on myself, and work on improving every aspect of my life
* grow in my marriage and be a better wife (not that I'm a bad one, but that's always a work in progress, right?!)
* share my thoughts with others more often!
* master time management skills
....

And the list goes on & on. How do we manage everything we want to do? How do we find time to complete everything that means so much to us? How can we continue to live life to the fullest day in & day out where we make a difference not only to those immediately around us but to others we may never know?

In my recent days of reflection, the above questions are just a sampling of what's been going through my mind. For the past couple of weeks, a radio advertisement for the Breast Cancer 3-day walk has been playing constantly and there is a song that plays in the background. I knew I had heard it before, but I couldn't place it.

I heard it again this morning, and looked it up. As I listened to the words and read the lyrics, it took me back to 2003 when Amanda was a baby and the Crop for Cancer journey began. How much joy was in my life at that time for all the good things we were doing to make a difference. How successful we were with the event and how proud I was to be a part of it.

We all need things like this to give us perspective. Reflecting back on this this morning has brought more clarity to my above bucket list which has led me to post my thoughts and share this song with all my family & friends, as well as those strangers I may never meet.

There is always hope among our daily struggles & triumphs - let this be a reminder to you as it has for me.

~Jamie was here

2008 Christmas Card and Letter

2008-12-28T21:21:00.007-06:00

Here's hoping you and yours had a wonderful Christmas!

I Spy 2 Blooms

2008-09-29T09:57:00.001-05:00

Huge Scrapboooking Sale! Don't Miss It!

2008-09-10T17:51:00.011-05:00

If you want to participate in the blog train for your chance to get even more goodies, post this code on your blog!

Kindergarten Update: Part 1

2008-08-27T09:42:00.009-05:00

I think the verdict is, she loves school! She can't wait to go to bed every night just so she can wake up early for school. We drove the first day since we had all the school supplies to take with us. Yesterday we rode our bikes, and today we drove because she wanted to wear a pretty dress. It was so nice to be able to drive up to the curb and watch her exit the vehicle all by herself! Little Miss Independence!!

She came home on the first day with a cute poem that I thought was worthy of sharing.

And on the back, she had written her ABCs

Enjoy!

Gratitude

2008-08-27T09:00:00.001-05:00

Challenge layout I created for Faith Sisters.

Childhood Home

2008-08-27T09:00:00.000-05:00

Another challenge layout I created for Faith Sisters!

Lake Arbuckle with the Garcia's - 2008

2008-08-25T16:14:00.003-05:00

Soccer 2008

2008-08-25T16:06:00.006-05:00

1st Day of Kindergarten

2008-08-25T10:28:00.003-05:00

Yes, I know, I am very behind in updating this blog. I can't believe its been since March! Crazy how fast time flies.

Amanda was very excited to start school today. I think I was more anxious & nervous then she was! When we arrived at Ms Gunter's classroom, she immediately went to her teacher to give her a picture she had colored for her. After about 10 minutes of getting her all settled, she looked up at Kevin & I and said bye mommy and daddy!

I wasn't ready for that! I can't wait to pick her up this afternoon to hear all about her first day of Kindergarten!

I am dependable when...

2008-03-31T19:06:00.004-05:00

This morning was one of those days...you know the one...where the children don't want to listen to a word you say so they throw a complete fit?

Here's the play by play this morning

8:00am - Pitter patter feet enter my bedroom, sniffles begin when she reaches my bedside...
8:02am - I finally roll over, asking whats the matter? why are you crying?
8:04am - after asking repeatedly, "I don't want to go to school"...yes you have to..."noooooo"
8:30am - please go get dressed so we can go to school, "I don't want to GO TO SCHOOL"...Yes you are going to school!
9:00am - I decide to shower while she is crying and screaming, which she continues right outside the bathroom door.
9:10am - In my towel, I promptly get her attention and yell "go to your room", apparently she thinks the living room is now her room, so I follow behind "go to your room" and point her in the correct direction. She now determines the bottom of the stairs is where she sleeps every night. I quickly get dressed so I am not running after her in a towel...
9:12am - Return to the stairs, "I said GO TO YOUR ROOM!", pick her up, place her on her bed and close the door. She continues to scream, attempting to get my attention.
9:20am - I don't hear anything, so I open the door to check on her...she is fast asleep.
10:15am - Pitter patter feet coming into my office, "do you feel better, I ask?", she nods yes. Come here, so I give her some hugs, some lovins etc.
10:20am - OK, lets go get dressed...sniffles begin "I don't want to go to school", here we go again?? I start asking her questions as to why she doesn't want to go, when she replies with nothing valid, we proceed to get her dressed. She's crying the entire time.
10:25am - Once we are in the truck and on our way, she is silent.
10:35am - Arrive at school just as her class is going outside to play. I stop the teacher, is there anything I should be concerned with? Is she doing ok while at school, causing any problems? The teacher assures me she is doing great and is only upset for a few minutes after I drop her off.
10:37am - I get back in my truck to go home...

I've been thinking about this behavior all day. She's 5 years old now, why does she throw tantrums like this? Is she trying to pull one over on me thinking I'll just let her stay home? Kids!

6:30pm - Kevin and Amanda arrive home, she's happy and had a great day at school. She sheepishly smiles when she sees me...then shows me the coloring she did at school...

so...does this mean I need to start feeding her ice cream for breakfast so the day can begin on a better foot???

Oh yeah...and wouldn't ya know she actually asked me if she could have ice cream for breakfast this morning...

In Honor of Judy Valentine

2008-03-28T11:35:00.010-05:00

I am so saddened. A dear friend of mine from Alaska has been battling cancer for over a year and I just received some devastating news.

This is a hard thing for me to post so please bear with me. Judy will not be with us much longer. She had to go off her IPT treatments for awhile and the cancer took advantage and spread to her liver and bones. She is bed ridden and cannot talk very well. She communicates through nods and extreme low whispers. She is being well cared for with an in home nurse and hospice is meeting with the family today to help with her medication. She is no longer able to swallow her pain medication so they will be setting up a liquid method.

She weighs less than 100 lbs and it can be a shock if you are not prepared. She can have visitors but don't plan on staying long as she is heavily sedated and will not be able to stay awake for long periods. I know it is hard to visit someone in this condition, it was difficult for me. If anyone cares to see her but needs support please call me and I'll go with you. I wouldn't wait too long as I doubt she will be here too much longer. ~Celeste

Judy is an amazing woman. She's always there to help when needed, she's got a loving heart and a wonderful family. She's been a team member for the Crop for Cancer - Alaska team since day one and can always be counted on.

Please lift up your prayers to Judy, her family and her friends in the days and weeks to come. I encourage you to leave a comment for Judy and her family as they will be read to them to encourage & reflect on past memories.

Here is a layout of an album I did showcasing the Alaska Crop for Cancer team in October 2006.

~Judy at the Alaska Crop for Cancer event October 2006.

Easter 2008 Family Pictures

2008-03-24T22:33:00.003-05:00

My family celebrated Easter with our friends the Garcia's all weekend! On Saturday, we went to Dallas Blooms to take family pictures (and then some!)

It was a gorgeous day and we had a great time together. Here is the first of many layouts!

Still He Walked

2008-03-24T14:22:00.004-05:00

For God did not send his Son into the world to condemn the world, but to save the world through him.
~John 3:17

Created this layout for the Easter Challenge at Faith Sisters.

I hope you all had a Blessed Easter! More Easter layouts coming soon...

{Eye-Fi} Wirelessly Save and Share your Memories

2008-03-20T10:35:00.003-05:00

Have you seen this? This is a totally cool gadget that just might be a must have!

The Eye-Fi Card is a wireless memory card. It automatically uploads pictures from your digital camera to your PC or Mac and to your favorite photo sharing, printing, blogging or social networking site.

No cables, no waiting, no hassles. To learn more, visit eye-fi.com

Wow! I'm intrigued, are you?

Happy Valentines Day from RefresHER

2008-02-18T15:09:00.003-06:00

My sister-in-law sent this to me. This is my pastor from my church back home in Alaska. Love & miss these people SO much!

Sing it Dan!

Graduation? For Preschoolers?

2008-02-17T12:23:00.006-06:00

Life is so different here. In Alaska, there isn't a graduation ceremony for preschoolers, but here, there is. Cap, gown, flowers, ceremony and all the other details that go into a graduation. First I must say, I can't believe my baby is 5 YEARS OLD and 'graduating' to Kindergarten!

Where has the time gone? I was always warned to savor the moments as it would vanish before your very eyes, but my goodness, nobody said at the speed of light!

Amanda was sick the week the pictures were taken, however, she was feeling pretty good picture day, so I took her in just for the pictures. As she was dressed in her royal blue cap & gown, the lady said "what do you think, mom"? As Amanda turned around, I felt the tears welling up. WOW! She looks SO grown up! Right then & there, I saw infant to 5 year old in a matter of 1.2 seconds!

I received the proof last week and although her eyes could have been a little more open, I'm still blown away at this whole process of preschool graduation!

And...just in case you need a little reminder...

February 10, 2003

2007 Christmas Cards

2008-02-03T22:19:00.000-06:00

Here are the Christmas cards we sent out last year. Loved creating this one!

Friday {Freebies} at Faith Sisters

2008-02-03T20:12:00.000-06:00

Here are the latest Freebies in the shop...including a new design by yours truly!

ICE! at the Gaylord Texan

2008-01-31T23:02:00.000-06:00

One of the things we did this holiday season before heading off to Oregon was checking out the ice sculptures at the Gaylord Texan. Wow they were SO amazing! Here is a layout I did to showcase our time there.

Snowflakes Quick Page - Freebie!

2008-01-31T22:57:00.001-06:00

Just uploaded a quick page freebie for you in the Faith Sisters shop!

Add a little snowflake fun to your layouts with this eye popping quick page!

Contents include 1 Quick Page in both psd & png formats.

Update & Cutie Pie Denim Kit Released!

2008-01-31T17:47:00.000-06:00

Gosh...I can't believe how much time has passed since I last posted. Since it has been so long since I last updated, I've got quite a bit to talk about!

We spent the holidays with my parents in Oregon and had such a great time. It was so relaxing! We didn't have anywhere to be and many of the days I was there I never even left my pjs! Which, I know doesn't come as a surprise to some of you seems how I work from home & you can find me in my pjs more often then not! I also read through TWO books while we were there. I haven't read so much since high school!

Amanda was totally excited to be there with her Nonie & Papa, especially since it snowed a bunch! She finally got to make a BIG snowman & was tickled pink about it.

The new year has brought Kevin & I some very busy days with our jobs, including, more travel planned. Kevin will be leaving for a week in February to Paris France, without us, for work. I just couldn't see spending so much for airline tickets for us to go when he would be working. I told him since I had been there before, it was ok for him to go once without me...but he better not go up the Eiffel tower since I hadn't done that yet! Have to save something we can do together when we do have the chance to go as a family!

I'll also be traveling to Livermore CA in April for a week to spend some time 'in the office'.

Amanda celebrates her 5th birthday next weekend (which means I'm another year older too). I can't believe she is 5 years old already. We are planning a joint party with her best friend from preschool, Dakotah, who has a birthday on the 12th. Rather then have 2 parties for the school kids to attend, we decided a combined party would be more fun. I'm sure they will exhaust a lot of energy as we are having the party at the YMCA swimming pool! Amanda is so excited she gets to wear her new swimming suit we just got for her from the Gap this last weekend (thank you Grandma!!)

In other news, faithsisters.com continues to grow by leaps & bounds (just reached over 500 members today!) The friendships that are being built over there are amazing and its such a blessing to be a part of a community that designs for Him!

Speaking of designing, I just released my first ever paper/element digital kit in the faithsisters.com shop today!

This kit was so much fun to put together and I can't wait to get started on my next one.

Since I have so much to get caught up on, I'll be posting every day for the next week or so with recent layouts I've done, pictures of whats been going on recently and much more! Its time to get back on this 'blog train'!!

Who Am I...Casting Crowns

2007-12-12T12:15:00.000-06:00

This is so cool! I just had to put it here for you guys to see.

Faith Prevails

2007-11-19T16:22:00.000-06:00

Challenge layout I created for Faith Sisters.

My Place of Worship

2007-11-19T16:19:00.000-06:00

Here's another challenge layout I created for Faith Sisters.

2007-11-09T12:14:00.000-06:00

Take 25% Off Print Services -- both on LifeTimez Online and in the TLC shopping cart. All Photobooks, Board Books and Calendars are now on sale thru December 13.

Get your books and other personalized photo products ready for Christmas, including Photo Cards, Greeting Cards, Posters, Chore Charts and more for LifeTimez Online subscribers.

Order your photo products by December 10 to get Christmas delivery.

CHRISTMAS TIME
Wrap your memories this holiday season with the festive papers and embellishments that celebrate this joyous time of year!

This 28-page photobook album, by Karma Holoboff, lets you capture the Christmas spirit!
Included with all Standard and Premier accounts.

Print this design as a Photobook, with prices starting at just $19.95 (US retail).

You can see all 28 pages at http://www.LifeTimez.com Be sure to use my ID 428579 to sign up for your FREE 10 day trial!

Happy Halloween

2007-11-07T12:55:00.000-06:00

I completed the Halloween album today!

Veterans Day -- In Honor of Kevin

2007-11-07T08:49:00.000-06:00

Kevin emailed me yesterday asking if I had any photos scanned of him while he was in the Marines. His employer is honoring veterans who work there today & wanted it for a slide show of some sorts.

Well, me being the scrapbooker that I am, couldn't settle on just a picture...so here's the layout I created!

Kevin's reaction was: Big grin...smile goes away...looking intently...smiles big again..."This is Cool!"...

Then after really loving it...says..."there should be a bronze star in the middle of the Sea Service Deployment Ribbon"...and "I'm a traditionalist...if you're going to have the Creed of the US Marines, you have to have the whole thing!" Finally he said, "I enlisted in May 2001, but didn't actually ship off until January 2002."

Ok, fine! I'll go fix it for you! All in all, his reaction to the work I did was priceless!

Online Digital Scrapbooking -- 50% Off Photobooks!

2007-11-01T08:41:00.001-05:00

LifeTimez Online is an exciting internet-based service, featuring Top Line Creation's exclusive digital designs. Subscriptions for using the complete digital service can be purchased for just pennies a day!

Active subscribers have access to the entire LifeTimez library. There are scores of LifeTimez albums and designs to choose from, with more digital content releasing weekly.

The service allows you to easily insert photos and text to complete one of several projects available. Exciting project possibilities currently include Photobooks and Board Books -- with several other photo products slated to launch for the holiday season.

Many of you have seen our incredible printed Photobooks, board books and the new 2008 calendar. All of these and more are available through our new online service at www.LifeTimez.com.

And now through November 6th, all of our print services are 50% off - just in time for holiday shopping! Our already low prices are even better so now is the time to try LifeTimez Online to create some beautiful and memorable gifts.

LifeTimez Online- Free 10 day trial plus 50% off printing prices

Our new web-based print Photobook service, LifeTimez Online, has the best designs available online! You can simply drag and drop photos into pre-designed layouts to create -

* Custom calendars
* Photobooks
* Board books - perfect for babies and toddlers
* Cards
* Invitations
* Posters
* Chore charts

You know how much I love our desktop software, but one of the advantages of LifeTimez Online that I can't deny is how quick and easy it is to create gifts with your photos. No uploading huge files, no need to understand what jpg, zip files, or bits and bytes mean! Take a few minutes and give it a try now for FREE!

To try LifeTimez Online for FREE:
1. Simply go to the website - www.lifetimez.com
2. Click on the 10 day free trial link
3. Enter my ID number for Designate Consultant #428579
4. Enter your information
5. Upload a few photos, select a project, and have FUN!

With this special offer you can try LifeTimez Online for free for 10 days with complete access to upload photos, create projects and order projects. And to top it all off, you can get 50% off regular prices on all print services, now through November 6th. Create calendars for Mom and Dad, aunts/uncles, grandparents, kids- everyone loves a unique calendar for the New Year. Create board books for the toddlers in your life- they LOVE to see pictures of themselves! Create your Christmas cards now- no more last minute crunch to get them done. Create Photobooks of your family vacations, weddings, babies, pets and just everyday life- have copies printed as gifts and/or for yourself.

After the 10 day period, you can choose to continue with a monthly or annual subscription. The monthly subscription is $6.95/month or the annual subscription is $69.95 which also includes a free 8x8 Photobook, a $39.95 value. If you plan to create more than one Photobook or project, the annual subscription is a fantastic deal.

If you have ever used any online photo service, you will be familiar with how to use LifeTimez Online. Simply create photo albums and load pictures into your albums. Begin a project and drop your photos into beautifully created pages, add your own words and finish your book for printing. It is really that easy to create an unforgettable gift!

Get those photos off of your hard drive and into hard copy books this weekend to take advantage of the 50% price break.

Store is Open for Business!!

2007-10-30T18:29:00.000-05:00

Karma & I have a TON of scrappin supplies from previous direct sales businesses we have been involved with. It is currently taking up one of my bedrooms & we desperately need to get some of it out of here! For the last week, I have been a crazy women entering all this inventory into an online shopping cart!

I'm happy to announce our brand new online store is now open for business!!!

Disclaimers:
--Although we haven't completed the 'policies' and other mumbo jumbo stuff related to an online store, we are opening anyways!
--While you are browsing, you may notice duplicate entries for items. This is because there are 2 of us selling many of the same items. Select either option to add the item to your cart.
--While I have done everything in my power to ensure the quantities of our inventory, there may be a few miscalculations. If something you purchased is not in stock, we will contact you. You can either select a different item or receive a full refund on the item.
--Shipping will not be charged at the time of checkout. Once I pull your order, I will weigh the items & you will be invoiced for the shipping charges via PayPal.
--More product will be added, however, this is 99% of it!
--Extra surprise goodies in every order!
--At this time, we are only accepting payments through PayPal.
--All Sales are Final.

*****Free Shipping on the first 10 orders over $50!! (USA Only - International orders will receive $5 off shipping charges.)*****

LETS GO SHOPPING!

Inspiration Notebook

2007-10-22T11:42:00.000-05:00

Do you have a handy dandy notebook? (ha, couldn't resist!)

Do you have a notebook where you store ideas you find in magazines or the internet? I'm tired of lots of magazines sitting on my bookshelf, never to be looked at again when the next new one arrives!

So last week, I finally started to fix that issue. I spent some time this weekend & went through 99% of the mags I have & started tearing out the pages that caught my eye.

--Layout Design Ideas
-- # of photos
--Quote Ideas
--Topic/Subject Ideas
--Items I want to purchase!
--Technique Ideas
--Digital How To
--Color Combination Ideas
--Altered or Other Project Ideas
--Organization Ideas
--Templates

Now I'm going to create a notebook using the above list as dividers within the notebook. So when I'm in need of some inspiration, I can go to one place & flip through the ideas that have already inspired me once.

If I implement the idea, and its going to stay in my own collection of layouts, projects, etc. then it comes out of the notebook & in the trash, because I can now reference the layout/project that I created!

Do you currently do this? Do you sort yours differently? I'd love to hear how others deal with the mountain of magazines they have!!!

I went from this...

to this...

Wahoo! Got me some room for more scrap crap! Now I just have to sort those pages & file them in a binder.

A Day/Month in the Life

2007-10-19T20:12:00.000-05:00

Another Faith Sisters challenge.

Good Pails to Have

2007-10-19T10:39:00.000-05:00

These are so cute & would be so much fun to have storing your supplies. Tons of styles & pail sizes to choose from.

Good Pails

The Story of Jacob Tyler

2007-10-17T17:30:00.002-05:00

I finally put Jacob's story in a book! I was inspired last week by the Encyclopedia of my Ordinary Life project and three days, 64 digital pages later, Jacob's book is finished and being uploaded to have it printed and placed into a hardbound photobook as we speak!

It feels so good to have completed this, however, I still have one more to do for Brianna. I'm afraid to know how many pages that book is going to be since she was with us for 3 more months than Jacob was!

The kit that I created which was inspired by Jacob , is no longer being produced, however, I still have a limited number of kits!

Order today before they are gone!

Journal the Journey Kit
$20.00
On Sale for $14.00
Save 30%

Brides Against Cancer

2007-10-17T13:48:00.001-05:00

I finally got the courage to do it!

National Card Day

2007-10-10T20:01:00.000-05:00

I created these cards for the Faith Sisters National Card Day challenge.

My Testimony

2007-10-08T20:10:00.000-05:00

I have been trying really hard to put my heart & soul into the challenges at Faith Sisters. Really stretching myself & am so proud I've been able to get some of these emotions & thoughts down on paper.

4th Annual Crop for Cancer Results

2007-10-07T18:29:00.000-05:00

Aside from the fact that I wasn't there to help with the event this year, I'm so proud of these girls! I just received an email with this years numbers and am blown away!

Drum roll please....

$25,837.52** (doesn’t include 10% from store)

132 attendees brought in $11,351.40 in pledges!

$14,162 away from raising a total of $100,000 for the American Cancer Society!

Can't wait for the 5th Anniversary next year! If you'd like to know more about this awesome group of women, or to find out how to have an event in your area, please visit www.cropforcancer.com.

Congrats again girls!!

Pre-K Pictures

2007-10-04T20:00:00.001-05:00

One of the hardest things for a parent to do is pick which pictures you wish to buy. They have it down...multiple poses with multiple backgrounds for you to choose from...hoping that at least one of them will be 'good' enough for the parent to choose.

I arrive at school today to pick up Amanda with a big note on the door "Picture Pickup Today!" So before I enter the building, I go back to the truck for the credit card. Just inside the front door is the table setup, anxious parents ready to feast their eyes on their precious little ones picture perfect faces.

Last name?, she asks. Aldridge, I reply...few seconds later she is laying out 3 different poses where there is usually just two. Puzzled, I look down at the poses. Ohhh.....right...that day Amanda happened to have a cute matching jacket with the outfit she wore, hence the reason for one extra shot!

As I browse the images, trying to hard to figure out which ones I should get for the friends & family who I know are eager to see a recent picture of the smiling beauty, I am once again perplexed. How do I choose?

I like the way her skirt is laying in this one, oh but I like the way her head is tilting a bit for this one, the eyes aren't open as big as in these other two...etc etc.

This goes on for a good 5 minutes, meanwhile other parents are paying quickly & heading out the door, suddenly I look up & realize I'm the only one left...uggg now there's pressure!

$75.00 for all 3 poses? I ask. Oh no, she replies, $75.00 for 6 sheets, 4 magnets & 2 4x5 (which is just 2 poses)....$15 more for each sheet. GASP...decisions decisions.

So I look back down at the pictures of my sweet 4.75 year old & then back up at the women who's making a killing off of all us, then back down again.

OK, how much for all of it...give me a deal! I said to her. She thinks for about 2 seconds, $115.00 and thats with an extra $10 off, she replies. Gee, doesn't seem like much of a discount, I think to myself.

Ponder, pause, look them over again. OK, I'll take them all. The pressure! Its SOOO hard!

3 poses, 3 8x10, 6 5x7s, 3 4x5, 24 wallets, & 6 wallet magnets later...

Oh & did I forget to mention that 2 4x5 & 4 wallet magnets were black & white? When I asked, she informed me it was done by mistake & rather than reprint them they decided to see what the parents reaction was. Gee, thanks for adding more decisions to the ones I already have to make!

So, all my friends & family out there...the pictures are up for grabs...which ones do you want because I've made enough decisions already!

Pose #1

Pose #2

Pose #3

Memories....Stuck

2007-10-02T22:47:00.000-05:00

I've finally jumped on the bandwagon & started my own personal blog! Don't get me wrong, I've "blogged" for some major life events before blogging was really popular, so its not completely new to me.

As you begin to check out my new site, you may have noticed there is a ton of information for 2002 & 2005...thats from my other blogging days where I documented some major life events that were happening at the time.

Its funny the way my mind tends to think of life events. As I copied these entries from their previous location to include them here, I realized how much I have not done for Amanda and how important the 'other' life events really are.

As I attempt to remember the bits & pieces of her life the last 4 years, I feel as though I have totally cheated her! Where has the time gone? Where is all the important information that I've laughed, cried, & rejoiced in over the years?

I'll tell you where it is...its somewhere in the back of my mind...stuck...just waiting to be remembered, written down & shared with others, but most importantly, Amanda.

So this is my humble attempt to begin digging up the lost facts that surround my life & sharing recent ones as they come along before they too 'get stuck'.

Come along & enjoy the Journey with Jamie!

Mom's Overture

2007-10-01T14:30:00.000-05:00

Hilarious!

Pachelbel Bedtime

2007-10-01T13:56:00.000-05:00

I came across this a couple weeks ago & just busted a gut laughing! So much of what he says in this song is true!

Let Yourself Shine

2007-09-25T23:20:00.000-05:00

A Mothers Prayer

2007-09-16T22:29:00.001-05:00

A Mothers Prayer
Little Ones Bible Prayers ~ By Erin Colton

Light my candle Holy Spirit
Place thy Holy flame in me
Light my candle Holy Spirit
Shine for all the world to see

Let is shine upon my baby
Let it shine in his heart tonight
Guide each step oh Lord with
thy flame inside
And keep the candle burning bright

Light my candle Holy Spirit
Place thy Holy flame in me
Light my candle Holy Spirit
Shine for all the world to see

Let it shine up on this way Lord
Let it shine no matter what the cost
As the years pass away this one
prayer I pray
May it lead to thy precious cross

Light my candle Holy Spirit
Place thy Holy flame in me
Light my candle Holy Spirit
Shine for all the world to see

Let it shine upon my baby
Let it shine in his heart tonight
Guide each step oh Lord with
thy flame inside
And keep the candle burning bright

And keep the candle burning bright
And keep the candle burning bright

Remember - You are a Sister

2007-09-11T22:33:00.001-05:00

For those that know me & my children...this layout was very hard yet therapeutic for me. I was completely submersed in it, klove playing quietly in the background (via internet since Dallas area isn't fortunate enough to have it yet!)...suddenly I found myself listening to the radio...taken quickly out of my deep thoughts and heard Jake's song "We Live, We Love" by Superchic. As if I wasn't bawling enough already...that really set me off...as if He was with my kiddo's at that very moment sending their encouragement my way.

Thanks for the great challenge and for pushing me to do layouts that I knew I've wanted to do, yet couldn't find the words or thoughts to do them.

Amazing Beauty

2007-06-13T23:23:00.000-05:00

1st Dance Recital

2007-05-19T21:50:00.005-05:00

2005-11-20T17:10:00.000-06:00

Obituary printed in the Anchorage Daily News

Jacob Aldridge, infant

Anchorage resident Jacob Tyler Aldridge, 2 months old, died Sept. 20, 2005, at Providence Alaska Medical Center due to an unknown seizure disorder.

His family took a helicopter ride Oct. 9 to Mount Susitna, where they scattered his ashes.

Jacob was born July 28 in Anchorage.

His family said: "Jacob has touched the lives of so many. He was an inspiration to all of us and will be missed greatly. Although his time with us was short, his footprints have been left on our hearts forever.

"Jacob also gave the gift of life through organ donation to make life better for another child."

Survivors are his parents, Kevin and Jamie Aldridge; sister, Amanda Aldridge; grandparents, Larry and Judy Hancock, Darius and Marjorie Aldridge, and Paul and Vicki Matusewic; great-grandparents, Alexander Buyers of Edinburgh, Scotland, Lillian Bertuccelli of Castro Valley, Calif., Richard and Alice Hancock of Lincoln, Mo., Jean Hancock of Arvada, Colo., Jay Matusewic of Phoenix, and Roy Young of Van Buren, Ark.; aunts and uncles, Todd Silveira of Orlando, Fla., Wayne Silveira of Bend, Ore., Nicole Matusewic, James Matusewic, Darius and Regina Aldridge of Tacoma, Wash., David and Heather Aldridge, and Kerry Aldridge; and cousins, Jessika, Corey, Zachary, Kyle, Lyndsey, Shyanne and Sienna.

He was preceded in death by his sister, Brianna Aldridge; and great-grandparents, Roy Bertuccelli, Al Perry, Jessie Marie Young, Benjamin and Verlie Sue Aldridge, and Matilda Buyers.

Memorial donations may be made online at www.journalthejourney.com or sent to the Children's Miracle Network at Providence, 3200 Providence Drive, Anchorage 99508. Memorial tributes may be made at www.kreationstation.net/jacob.

Arrangements were with Kehl's Forest Lawn Mortuary.

...until we meet again sweet son, we love you & miss you...

Guestbook

2005-10-10T17:27:00.000-05:00

I'm so grateful for all the messages of encouragement we received while on this journey. Thank you again to each & every one of you.

View My Guestbook

Farewell Sweet Jacob

2005-10-09T17:09:00.000-05:00

Before I explain the emotions of the day, I want to express my sincere apologies to those that I should have called, emailed, or made some sort of contact with. Kevin & I found out late Friday that today would be the day to take Jake to his final resting place. I received the call while at the Hilton Hotel setting up for the 2nd Annual Crop for Cancer event that took place yesterday (which raised over $27,000) I had no time to think about making the necessary calls and I truly apologize. My parents didn't know for sure until 2 hours before departure & my closest friends weren't even called, I feel terrible about it, however, I also believe it was just as it was meant to be & I know everyone was there in spirit regardless if you knew that it was taking place.

If you happened to look out to Mt Susitna today, you'd have seen the most beautiful view I think I've ever seen. The entire surrounding area was covered with dark thick clouds, with the exception of Mt Susitna & the Alaska Range. It was amazing! The sun was peaking through & just lighting the area up.

As Kevin & I were getting ready to leave, I was in a flurry to find the aviation map that had the latitude & longitude coordinates of where we were going, and I couldn't find it. After searching 3 areas that I 'just knew' it would be, Kevin made mention of a photo box that has Brianna's name on it. Finally as I got to the bottom of the box, there it was. I stood up & hugged him tight. Thanked him for thinking of this little box, as I just couldn't stand the fact of going & not getting near the same spot.

My parents & Kevin's parents met us at Era, where we would take off from. We decided not to take Amanda as we didn't need the extra things to deal with, like her not taking to flying well, as she has never been in an airplane.

We were supposed to take off about 10am, but Winston, the pilot, was running late & got stuck in the McDonald's drive thru! haha I didn't happen to look at the clock when we did finally take off, but I do believe it was around 11:00ish. The view was breathtaking. I had forgotten how pretty this State is from the air. Those that were on the ground watching us from Pt Woronzoff could see the helicopter until we landed on Mt Susitna...wow!! I couldn't have asked for a better day. Even though Anchorage was cloudy, the view of where we were going was spectacular, as if God was saying, it may be dark now, but light is just around the bend.

Once we were in the air, I made a point to look down at Pt Woronzoff. I knew I wouldn't be able to see 'people', but I did see a few cars & flashes of light as they took pictures.

The ride over was full of both silence & laughter. Winston used to work with Kevin, and if you've ever worked for a good employer, you know the 'like family' atmosphere. I remember Winston turning around & looking at Kevin saying; "having you on board with me just isn't right! A bit scary!" We all couldn't help but laugh. It was nice to have laughter at a time that is so sad.

As we were approaching the mountain, we saw 4 Grizzly bears; mom & 3 cubs!!! It was the coolest thing! They were running around & looking up at us not knowing where to go or what to think. Winston took us up over the mountain so we could see the view on the other side, something we were unable to do the last time. It was so great. Then we circled around & started looking for anything that looked familiar. We had the longitude & latitude coordinates from when we took Brianna, but it only gets you 'close', not exact. Once we saw what appeared to be 'the rock' we found a safe place to land. I'm not convinced we were in the exact spot, but I have to force myself to think that it's ok. I know they have already found one another and are running around all over the place.

Once we got out of the helicopter, we soaked in the view, a view that was better this time then last as there weren't any clouds above or around us. Although it was freezing (43 before wind chill), we made the best of it. We looked down the mountain where we had seen the 4 bears & saw them looking up at us; we were about a mile away from them.

With Winston on 'bear watch', the six of us began to walk down to 'the rock' & proceeded to take Jake out of the urn. I was downwind this time, so Kevin asked if I wanted to release him. After swallowing hard, I agreed. At that time, my dad joined us & wrapped his arms around us both. All I could do is sob. I remember taking a moment to feel the wind on my cheeks & looking at the picture of his sweet face that I brought with us, while unwinding the twist-tie. I then grabbed a hold of the identification tag that was at the bottom of the zip-lock bag & let him fly in the wind.

Then, my dad moved in beside me & began to release the ashes of our childhood dog, Misty, who they have had in an urn for the last 13 years. So now, not only does Brianna have a brother with her, she has a puppy to play & run around with. I wish I could put into words how I felt during the time I was there, but it's just so mixed. I was happy, sad, exhausted, relieved, & now cold!

We took a few more pictures of the surrounding area & loaded back into the helicopter. I wish we could have stayed longer & just reminisce, take in the moment & relax a little, but it was so cold & since we weren't dressed in hats, gloves, & other cold weather gear, I knew it was time for us to go.

As Winston maneuvered us off the mountain, he circled around the area so we could have one last look & then started moving away from the mountain. With Jake's picture held tightly in my hand, I admired the view on the way back & cried.

I'm so grateful for that 'family like' atmosphere; if it wasn't for that, this event may not have been possible, or at least wouldn't have been free. I know what it meant to Winston to be able to take us there because he knew what it meant for us.

We arrived back about 12:15pm & afterwards we didn't do anything. We all arrived in 3 vehicles & we left going our own ways. Once Kevin & I got home, his sister brought Amanda back to us & we visited for a little while. Shortly thereafter, Kevin's brother arrived & joined our visit with his sister. We talked about the trip over & other non-related things that made us laugh. Once they left, we put Amanda down for her nap while Kevin & I laid in bed & watched the recording of our Sunday night shows. It didn't take long for me to just fall asleep. When Amanda was up from her nap, we went over to my parents house for dinner. All & all it was a relaxing day, something I desperately needed.

It felt good to have this big weekend behind me, I just wish I could have stopped the time to reflect on the events a little more closely.

I'm just a wreck...strength to hold my head up high is gone. I feel so much guilt. Guilt for not letting everyone know when this was taking place, how could I keep everyone so informed over the last 2 months, yet fail to tell you when we were doing this? Guilt for those of you that got the wrong impression of us not wanting anybody there to watch us.

Guilt for not video taping the event when I had the camera with me, guilt because I don't think we were in the exact same spot, guilt because I wasn't with my family the last few days because of Crop for Cancer, guilt because I feel I let the Crop for Cancer team down on Saturday as I slowly began to fall apart, guilt for letting Jake go...it's just never ending.

I hope I can get passed all the guilt that I feel...because I'm not liking it at all.

I do have some uplifting news. I heard from LifeAlaska (Organ Donor) last week & they tracked down when & where Brianna's heart valves were implanted, since I had never received confirmation (oversight). Ironically, they were implanted in a 19 day old baby girl from California in February 2003, the same month/year that Amanda was born. Jacob's heart valves will be on hold for a little while longer because of the autopsy tests they are running. I can only hope that one day in the future, I'll hear of another little one who is able to survive on account of my beautiful son.

I also hope that in time, we will have the answer we so long for.

Thanks again to each of you. You've helped us in many ways, and we thank you. I know that many couldn't have been there, even if we would have got the word out, so for all of you that weren't there, I hope you can get a small taste of what it was like by looking at the pictures that I've provided. Click on any one of them to view it larger.

Before takeoff

During Flight

See the four Grizzly's?

Arriving back

Jacob Tyler Aldridge
Born July 28, 2005
Passed Away September 20, 2005
Placed on Mt Susitna October 9, 2005

View from Pt Woronzoff

Natalie Grant - Held
From the album Awaken

Two months is too little
They let him go
They had no sudden healing
To think that Providence
Would take a child from his mother
While she prays, is appalling

Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair

Chorus:
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and know
That the promise was when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

Chorus:

If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior

Chorus: (2X's)

Final Preparations

2005-10-04T17:08:00.000-05:00

We are hoping to have the final arrangements planned by tomorrow evening. Kevin's mom had open heart surgery 2 days after Jacob passed away, so we've been waiting for her to return home from the hospital before making any final plans. Kevin was also gone on the slope beginning last Friday & returned home this evening. Now that he is back & mom is doing well, we are hoping to schedule the helicopter ride for Sunday, October 9th, in the afternoon. Kevin's previous employer has agreed to take us to Mt Susitna, free of charge. I will post another message once it is all confirmed.

Kevin & I are doing fairly well, better then most might expect. There is something that many of you don't know (imagine that!), that has been in the works since June, and that is a fundraising event that is led by me called Crop for Cancer. Because of the amazing individuals that help me organize this event, I have been able to put it on my back burner, while they have picked up the slack. However, since Jake's passing, I have been involved full swing, making sure all I's are dotted & T's are crossed.

The event is this Saturday & we have sold over 160 tickets! Not only that, but so far we have also raised over $14,000 prior to the event even starting! I'm also excited to say that this year a Crop for Cancer is also being held in 3 other states; Hawaii, Texas, & Oklahoma and I have guided them with their events as well. If you are reading this & would like to participate, it's not too late!

In addition to the Crop for Cancer planning, I've been working with the NICU on developing a curriculum, based on the Journal the Journey project, that will be used to help other families cope with their NICU experience.

Stay tuned, as I hope to announce something that ties this all together in the next few days.

Many of you wonder how I can continue doing what I do & I have a few things to throw at you:

--Because my husband needs his wife back

--Because I still have a 2 1/2 year old that needs me & has suffered enough of Mommy & Daddy not being here the last 2 months. The last thing she needs is to see me in pieces. She needs to feel the security she felt before all of this happened. I am happy to say, that in just a matter of 3 days, her attitude was MUCH better!

--Because the world doesn't just stop because I need to mourn & cry my eyes out...time is still ticking & lives still need to be changed!

--Because of the Journal the Journey project that I'm implementing in the NICU

--Because of the final planning for Crop for Cancer that's THIS weekend, and I'm being depended on to pull it together

--Because the preparations for the final goodbye to Jake still need to be completed

--Because Jake would want me to take this tragedy & the emotions that I feel, & make something of it. He wouldn't want me to feel sorry for myself, but rather to continue to be a positive influence of those around me & those I've yet to come in contact with.

And through all this what has this sweet & handsome son of ours done? He's reminded the closest members of my family as well as the many that have been sent to this website, the true meaning & purpose of life.

We all have stories that need to be told & have a lasting impact on our lives. It doesn't matter to me if you do it fancy like I do with journaling, photos & pretty paper, typed on the computer, printed & stored in a notebook, write them on regular blank pieces of paper, or pay somebody to do it for you; the important thing is that you document it & store it somewhere safe.

Best of all, God has a plan for each & every one of us. A plan far bigger then we can see, hear or touch. Stretch yourself & be somebody you think you can't; be the wife, husband, sister, brother, mother, father, or friend that God has asked us to be & then wrap your arms around your family & tell them that they are most important in your life. There is no job or hobby as valuable as family.

Life is precious & not meant to be taken for granted. Every moment that we are here on this earth is a gift from God as well as another moment for us to share our lives with those around us & make the most of it. Another moment for us to tell them we love them and another moment for us to document our lives as only WE can, so that after we are gone, our stories & lives are remembered & a precious legacy is left behind to those we love, forever. Don't let time slip by you...

"I can do all things through Christ who strengthens me."
Philippians 4:13

The Medical Team

2005-09-20T17:22:00.000-05:00

First Song: We're the Doodlebops - Tumbling - Blooper: Mat is too slick & she can't quite get the bridge to work!

Second Song: Dora - Get On your Feet - Tap Dance - Blooper: Oops...I have lipstick on!

Third Song: Never Alone - Ballet - Blooper: Couldn't keep from yawning!

Neonatology
Dr Emilio Avila	Dr Jack Jacob		Dr Eric Johnson	Dr Kenneth Kesler	Dr Lily Lou	Dr Anjali Parish
Pediatric Neurology				Pediatric Surgery
Dr Aaron Johnson		Dr Roderic Smith		Dr Stephen Jolley

2005-09-20T04:45:00.000-05:00

No words can describe the pain I feel in my heart right now. Jacob Tyler Aldridge joined his big sister, Brianna Renee, at 2:45 am (PST) today. Watching, holding & comforting him the last hours of his life was the hardest thing I will ever have to do. I had a vision in my mind of what it would be like having been here before, and it was nothing like it. I hope I never have to watch a friend or family member in their last moments ever again. I also hope, that over time these vivid images in my mind begin to diminish so that I can remember the happier times we had with him, although they are few.

I want to take this time to thank our friends, family & all the prayer warriors that gave us strength to endure this journey. I would also like each of you to consider purchasing the Journal the Journey kit that was inspired by this sweet son of mine. Join me in carrying out what I believe to be his purpose & journal an event that is dear to your own hearts so that it too can be passed down for many generations, as well as provide remembrance of happier times, or some sort of healing for the sad ones, as it's done for me. Included with each kit are Jacob's footprints, help me to spread them across this country & allow him to continue to touch more lives then anyone could imagine, including those children suffering from Hurricane Katrina.

Kevin & I aren't sure what kind of arrangements will be made yet, however, one thing is for sure, we are going to do our best to get a helicopter ride over to Mt. Susitna. He needs to be with his big sister.

It tears me up to know that you are no longer with us, Jake, but it warms my heart to know that you are no longer suffering.

Rest in peace my sweet son,

Love Mommy, Daddy, & Big Sissy Amanda

2005-09-18T17:07:00.000-05:00

Amanda came to see Jake yesterday & we finally took a family picture. Course, this was before the NCPAP was removed so we might have to take another one!
(click picture to see it larger)

Is this ride over yet? Jake is doing about the same. The NCPAP was replaced with Vapotherm on Saturday. Vapotherm, is a high flow nasal canula that works like the NCPAP, however, it's easier to maintain & doesn't sit on his nose like the NCPAP does.

He seems to be tolerating it. His seizures are not as controlled so over the last couple of days, his medications have been adjusted. He's still on Klonopin, Depakote & Keppra. While I was there today, he was having a seizure every 5 minutes. Some were brief, others were prolonged, lasting about 1-2 minutes. He's still having 'events' but is self recovering from them.

He doesn't seem comfortable to me at all. The pain I feel in my heart every time he seizes is indescribable. He has got to be so tired from having all these seizures. I'm just aching. I don't want to see him suffer any longer, but at the same time, I hate the thought of letting him go.

It's such a vicious cycle.

Overall Status: Stable with increased seizures

Visitors: Grandma & Grandpa (Saturday)

Dinner Provided By: The Newman Family

2005-09-15T17:07:00.000-05:00

I really don't know what to say about our little Jake. He is still having 'events' although they appear to not be as frequent. His CO2 level this morning was elevated, but normal for him so they are very happy with that. His oxygen requirements decreased throughout the night to 21-25%, down from 30-33%.

The NCPAP is still doing a great job with keeping his lungs expanded, it's just a mystery as to why he's having these events. Some speculate it's because he gets tired breathing & just decides to stop. Others think it's triggered by seizures, which sometimes it appears so, other times he's completely still & then goes blue.

At this point, we aren't sure what to do. The answer from God just hasn't been given to me yet, so I just keep truckin' along.

Pray that God will provide us a clear path, peace with whatever happens, & strength to continue this journey.

Overall Status: Stable

Visitors: Celeste & Judy, Noni & Papa, Kerry

Dinner Provided By: Celeste

2005-09-14T17:12:00.000-05:00

Increased seizures throughout the night. 4 or more in last 45 minutes. Heart stops & loss of oxygen. On my way to hospital now...pray pray pray.

Overall Status: Critically Stable

Visitors: Laura, Mom Cray, Grandma & Grandpa, Chris C, Sara

2005-09-11T17:05:00.000-05:00

Finally...my first night back home. Today, we've had a little setback. Jacob's CO2 level has started to climb & was increased over yesterday, however, it's still considered good. The fear is his body is starting to compromise because he just can't keep his lungs expanded enough. He also had an x-ray today that showed his left lung on the verge of collapsing again...arggg So, Jacob spent most of the day on his belly, which helps to keep the pressure off his lungs, and he seemed to love it.

Dr A. Johnson called for a status this evening & although his oxygen saturations are still doing good, we have had to increase the percentage of oxygen he's getting. Jacob also had some bradycardia (drop in heart rate) events today. It's unknown if it's his lack of breathing that's causing the brady's or if seizures have caused them, or a combination of both.

Instead of continuing to increase the oxygen, knowing that he's most likely compromising, Dr A. Johnson asked that we put the NCPAP back on. We will do another CO2 check & x-ray tomorrow morning to see if the NCPAP has helped to correct the problem.

We've also added Keppra back in the lineup within the past couple of days due to increased seizures. As of today, his seizures did seem to be less often, which is good.

Overall Status: So far so good!

Visitors: Celeste

Now onto something a little off the page. A couple weeks ago, you may recall in one of my daily updates, I had mentioned something that I was working on, but it was too soon to share it with everyone. It's now time.

Introducing Journal the Journey

2005-09-10T17:05:00.000-05:00

Jacob continues to do amazingly well! As of yesterday about 6pm PST he was downgraded to a nasal canula!

He is currently on 1L of flow with about 30% oxygen. He is also no longer under the radiant warmer...he's in a REAL basinett!

GO JACOB!

His CO2 last night at Midnight PST was NORMAL.

If all continues to go well, we might actually be taking lil' Jacob home soon...could it really be happening???

Continue to keep us in your prayers!!! God is hearing each & every one of them.

Overall Status: So far so good!

Growth Stats:
Weight: 8lbs 10oz

Visitors: Brooke, Colleen & Reid

2005-09-08T17:04:00.000-05:00

I'm staying at the hospital tonight to be closer to Jacob so I don't have the means to update his website, however I do have access to my email!

Jacob was extubated at 7:00 PST. As of right now, he is doing REMARKABLY well!!! We just did a CO2 check at 10:00 PST and its better then normal! It's right where it should be!

He's currently on a NCPAP (Nasal Constant Positive Air Pressure). This is in his nose similiar to a nasal canula, but instead of just flowing oxygen it gives a little pressure to hopefully keep his lungs open. He is also on his belly which he seems to really enjoy. Being on his belly will allow the secretions to stay more in his mouth instead of draining into his lungs. He's doing a lot of "eh heming" trying to clear out his throat which is a good sign, now he just needs to get the coughing down & he'll be clearing out his lungs in no time.

They won't do another CO2 check until 7:00 PST tomorrow morning, unless something tells them otherwise. Right now he is just doing wonderful. I'm not trying to get my hopes up too much quite yet, but so far I think he's amazed all the doctors...here's praying he'll keep it up!

He goes in for the 6 hour sleep study tomorrow morning at 10:00 PST as long as he continues to do as well as he is.

I'll try to come back again sometime tomorrow to update you some more.

Keep those hard core prayers coming!

Overall Status: So far so good!

Visitors: Colleen, Sara & Jared

Dinner Provided By: Colleen, Sara & Jared

2005-09-07T17:04:00.000-05:00

First let me apologize for not keeping you all updated, I'm sure many of you are very worried. I'm so emotionally drained, it's taking all I have to keep my head above water.

The good news is, it appears the pneumonia is gone & since the Klonopin was re-added within the last couple days, the myoclonis has gotten better. He has also been having a lot more awake time, but not as often as he should.

We had a care conference yesterday with two of Jacob's primary care nurses (Mary & Carol), Dr A. Johnson, Dr Kessler, Dr Parrish, spiritual care, social worker, case manager, and us. It was very emotional. Nothing was really said that none of us didn't already know, however, it was a time for us to lay it all out with everyone there; hash it out so to speak. We have devised a plan that goes as follows:

1) Jake has started a 24 hour steroid treatment as of today. This will help clear up any swelling in his lungs and/or airway to help with the extubation process.

2) They also started another drug that will help dry up some of his secretions so they aren't as bad. Hopefully this will make it easier for him to maintain his own secretions & not fill up his lungs with them.

3) Extubation will be attempted late Thursday or early Friday. If he immediately fails, reintubation will occur. At this point it will be clear to Kevin & I that he will never be able to breathe effectively on his own and we'll need to do some final soul searching.

4) If he can maintain, Dr A. Johnson will be doing what's called a 'sleep study' most likely on Saturday. This will help in determining if Jacob has Hypoventilation Syndrome, which is essentially another way of proving that he won't be able to breathe on his own.

5) If, over time, Jacob progressively gets worse, we will not reintubate.

6) Continue with any other genetic testing, if not for Jacob, for the sake of Amanda's children and others not within our family.

This is weighing very heavy on our shoulders. I can't stand the thought of looking into my sweet son's eyes & not giving him the necessary means to help him breathe, but at the same time, I know that quantity of life is not as important as quality of life.

With Brianna, she made the decision for us. She got a brain hemorrhage & never woke up. Jake's not in that position, however, I know in my heart he is suffering & will continue to do so as long as we medically keep him going. Is that really fair to do?

As I watch the ventilator draw a 'loop' of the machine breath vs. Jacob's, it's clear to me how he's going to handle being off it; I'm just hoping for that miracle & that he proves us all wrong.

Please keep us in your thoughts while we hit this head on. It's the second hardest thing we'll ever have to do in our life; the first being when we did it with Brianna.

All I ask is that God give us clear guidance on what the right thing to do truly is.

Visitors: Grandma & Grandpa, Kerry

Dinner Provided By: Valentine Family

2005-09-05T17:03:00.000-05:00

Visitors: Colleen, Grandma & Grandpa

2005-09-03T17:03:00.000-05:00

Have I mentioned lately how tired I am? I'm not sure how much more of this I can take...or how much more my family can take...or how much more I'm willing to let Jacob take.

It's Midnight right now & I'm really tired, however, I know many of you have been anxiously awaiting an update, so here is a short one until I can post more details tomorrow.

Jacob is still having seizures, although they appear to be better now that his carbon dioxide level has decreased. In fact, his condition got better as the day went on, so it's almost certain now what's causing the seizures.

Dr A. Johnson stopped the Klonopin altogether today so that we will finally know how much it might be contributing to this mess. The EEG is now running & will run for at least 24 hours.

Stay tuned for more information that I'll post tomorrow...

2005-09-02T17:02:00.000-05:00

It's official, Jacob has pneumonia. Poor guy, if it's not one thing it's another. The last 24-36 hours, Jacob has had in increase in myoclonis movements. About 4:30pm today, I was holding him & all of a sudden he began a vicious cycle of seizures. I could feel the progress of the seizures as they gained intensity. After about 4-5 in a row within 10 minutes, I called Dr Jacob, the neonatologist, to the bedside & asked that Dr A. Johnson be called.

After the doc's collaborated about what to do, a blood gas was drawn to see what his carbon dioxide levels were...result: in the 80's (normal range is in the 40's). Dr Jacob asked the respiration therapist (RT) to get them in the 60's...if you can't make it happen, come tell me.

RT made some changes to the ventilator settings & another gas was drawn an hour later...no change in the level...and seizures are still going. After about 2 hours of pretty much non-stop seizures, they finally started to settle down & Jacob fell back asleep.

It's unclear; either the seizures are causing the respiratory issues or the respiratory issues are causing carbon dioxide levels to sky rocket which in turn triggers the seizures.

Dr A. Johnson will be in tomorrow for observation & will be hooking up another continuous EEG.

Overall Status: Good

Visitors: Nicole

2005-09-01T17:02:00.000-05:00

Today was a fairly mellow day. Jacob did have some alert time, but overall it's still pretty much the same. Nothing really to report today.

Overall Status: Good

Visitors: Laura & Karen, Keith

Dinner Provided By: The Victory Family

2005-08-31T17:02:00.000-05:00

When I arrived this morning, Jacob was on more oxygen & the nurse informed me a sample of his secretions had been sent to the lab to test for infection. Jacob's secretions have gotten worse over the last couple days & he's been having a harder time breathing. The culture came back positive, he's got an infection, which isn't uncommon for somebody on a ventilator. So guess what? Jake got another IV put in today for the antibiotics & they also sent a blood culture to make sure the infection isn't in his blood stream. It will be a couple days before we know the answer to that.

What does this mean? There will be no attempt of extubation while the infection is there, which will most likely be 5-7 days. Uggggg

Dr Roderick Smith came for the consult visit with us today. He talked with us for a while & then reviewed Jacob's ever growing chart. When he returned, he pretty much said the same thing that all the others have...it's a mystery. He does have a few ideas for some additional testing that can be done. He's going to talk with Dr A. Johnson & compile a list.

We have scheduled a family care conference for Friday afternoon where both pediatric neurologists will be there. I'm not sure what exactly will come out of the meeting, but I do know it's mainly to get everybody on the same page as well as ask Kevin & I some tough questions that the doctor's need answers for in order to best care for Jacob if things turn for the worse.

Jacob did have a better day today in regards to jitters/twitching. He was pretty relaxed all day & his muscle tone was much better. Again, he showed no awake times. Maybe tomorrow I'll see those pretty eyes again.

Overall Status: Good

Visitors: Grandma & Grandpa

2005-08-30T17:01:00.000-05:00

Today felt like a little set back compared to yesterday. Dr A. Johnson was in, and at the time he was there things appeared to be ok, however, as the day progressed Jacob seemed to be a bit more jittery & his muscle tone was a lot tighter over yesterday. He had ordered the Klonopin be decreased again, but after I informed Dr Kessler about what I had seen, he called Dr A. Johnson & they agreed to leave the medication as is for another day or so.

Kevin finally made it back from the slope after being gone for 5 days. I was hoping he was going to see Jacob alert & relaxed, but no go. In fact, Jacob didn't have any alert time today. Ugggg

Overall Status: Good Day

Visitors: None

Dinner Provided By: The Emery's

2005-08-29T17:01:00.000-05:00

I'm so excited!! I couldn't seem to drive home fast enough to post all the great things today brought us. Praise God for the miracles he is doing!!

Where do I begin?! The EEG was removed this morning, but he still had the wires attached when I arrived so I still couldn't hold him. Since the monitoring equipment was now gone, I had plenty of room to setup camp right next to his bed, at his level, & scrapbook! So that's exactly what I did!

Did I mention he was awake when I got there?! Not only that, he was awake for 4 1/2 SOLID hours!! Eyes open & focusing on subjects for the longest stretch ever, and since his head was facing my direction, I was his main target! How sweet it was to look over with him just inches away & see him looking at me!

Around 5:00 the EEG technician arrived to tell us all the wires could be removed! Yippee!! Let me tell you what; after being hooked up to that thing for several days with a cap on him...he was starting to ssstttiiinnnkkk!! I couldn't wait to massage his little head & get all that crap out of it! Course, since he was hooked up for so long, he's got more scabs on his poor head...dang it! Good thing their skin heals quickly.

So I washed his head real good & gave the rest of him a bit of a sponge bath...then...I told the nurses I wasn't going to take no for an answer...get me my comfy chair & let me HOLD MY BOY! And that's just what I did! Ohhhh...that felt SOOO good & I can tell he totally loved it too.

Oh my gosh! I forgot to tell you some of the best news yet!! (see didn't I say there was a lot of great things?!) Jacob was virtually twitch & seizure FREE!!! He was barely having any myoclonis movements & I didn't witness ANY seizures today! He was loose & relaxed & didn't tense up to rock hard when he was moved around. He also startled as a normal baby would TWICE! I happened to drop my trimmer on the floor & it about scared the ba-jesus out of him! Arms & legs went flaring & eyes got wide looking around wondering what the heck that was!

He's also up to full feedings, 60 cc's every 3 hours, & the IV has been removed!

Dr A. Johnson arrived just after I got him in my arms to tell me the results of the last 24 hour EEG study -- only 2 seizures and they were so minor he almost missed them while reviewing! They were about 40 seconds...down from 4 minutes! wahoo!!

Then we talked a bit about what his future might be like. He honestly can't tell me. He gave me some percentages; kids that have uncontrollable seizures might have a devastating outcome, no real quality of life, etc....Jacob's seizures are under control. He can't say that he'll be normal either since he's had a rough start & does appear to have some developmental delays...doesn't suck/swallow well etc.

He also said that the entire NICU staff is feeling the same way he is. In some ways this is encouraging, maybe the future might not be so bad after all; in other ways it's frustrating not having a clue.

Dr Lou spoke with Dr A. Johnson before he came to visit me about getting his opinion on having Dr Roderick Smith come take a look at Jacob. They wanted to get Dr A. Johnson's opinion first, making sure they weren't stepping on any toes. Dr A. Johnson thought it would be a good idea, so I suspect I'll be seeing him sometime tomorrow, provided his schedule allows for it.

Finally, we talked about his respiratory issues. Currently the ventilator settings are set low enough where extubation could be attempted, the problem is they aren't sure Jacob will be able to breathe effectively or if he will be able to handle his secretions. Since Klonopin can cause respiratory issues as well as increased secretions, we are going to try & wean him off the Klonopin & see if the Depakote will handle the seizures by itself; which as long as we are clinically not seeing a decrease in Jacob's condition, he should be weaned by the end of the week. It's my understanding, once he's weaned & condition is still stable, extubation will be attempted.

SPECIFIC PRAYER REQUEST: I come to you today, Father, & ask that Jacob's seizures remain under control while he is being weaned from the Klonopin, that the secretions diminish so much that he's able to handle them on his own & that once the respirator is removed, he is able to breathe effectively over time. Amen.

This is the last hurdle to overcome before Jacob can come home!

Overall Status: GREAT Day!

Growth Stats:
Weight: 7 lbs 13 oz

Visitors: Grandma & Grandpa

Dinner Provided By: Noni & Papa

2005-08-28T17:00:00.000-05:00

Happy one month birthday little man! I can't believe a month has gone by already. I was able to drag myself to see Jacob today for about 3 hours. He looks so good!! He's a little swollen so they may give him another dose of lacex to help with that. I witnessed complete calmness, eyes open & looking around, some twitches & maybe one true seizure while I was there today. I was there for his 2:00 feeding and as milk was going in his belly, I noticed him sucking his ventilator tube and he did it consistently! Could this be a sign of eating the right way someday?! One can only hope! He is also up to 40 cc's of breast milk every 3 hours.

Dr Parrish stopped in to visit with me. She is going to ask Dr Roderick Smith to come down & look at Jacob tomorrow. He is another Pediatric Neurologist & although Dr A. Johnson has been consulting with him, she thinks it would be a good idea for him to come observe & read his charts, as he would be looking at things from a different angle & fresh mind, just in case we might be missing something.

They removed his Artery IV line today, this was used for a constant blood pressure reading, as well as a place to draw blood for lab work without having to poke him all the time. They also removed the IV that was in his foot. He has one IV left & if his feedings go well, they will remove it in the next day or so.

He is down to 21% oxygen, which is what we breathe -- so he's essentially on 'room air'!! GO Jacob! The breaths per minute are still at 20, however they have decreased the pressure to 17.

When days are good, there isn't much to report! Thanks again to all of you that continue to keep us in your thoughts & prayers...the power of prayer is magnificent!

Overall Status: Great Day!

Visitors: Nonie & Papa

Dinner Provided By: Sarah Hoffman

2005-08-27T17:00:00.000-05:00

More good news! Jacob was awake for about 25% of the time during the day nurses shift! Unfortunately, I wasn't there for any of it as I came down with some sort of crud during the night. Timing was terrible, as Kevin is on the slope right now. Thankfully, sister-in-law came to take Amanda so I could get some much needed rest to try & kick this crud to the curb.

The nurse felt Jacob had even less twitching/seizures today & she definitely noticed moments when he was completely still & in a nice deep sleep. As she would do his cares, he would wake up & twitch more, but not near as much as he was.

Dr Jolley gave the order for Jacob to receive 4 - 20 cc feedings of Pedialite this morning. As of this evening, Jacob was tolerating the meds & feedings just fine & will start breast milk again tonight.

Dr A. Johnson did stop by about 7pm and watched the EEG for about 20 minutes. The nurse reported to me today that he was very happy with what he saw during that time.

Overall Status: Great Day

Visitors: None

2005-08-26T16:59:00.000-05:00

Did I mention how much a difference a day makes? Oh yeah...yesterday I did! haha Well today is more good news! God is awesome! The previous 24 hours of EEG results are in...only 18 seizures! We are working our way back down again! Wahoo!!!

So what caused all this mess in the first place then? Here's our best guess...and a logical one at that:

1) Jacob is born & doesn't expand his lungs well, so as time goes by, C02 is getting in his system & condition is worsening.
2) He aspirates, which causes fluid to get into his lungs, causing more respiratory problems.
3) The Klonopin can cause more respiratory distress.
4) Lungs get so bad & lack of oxygen can cause anybody's system to react, with Jacob it resulted in massive amounts of seizures.
5) He gets put on a respirator to help him breathe which also helps to clear out his lungs.
6) He's on antibiotics for the surgery which is also helping to clear out the infection he has in his lungs.
7) Jacob's seizures get less & less as his body recovers from being 'sick'.

Does that make as much sense to you as it does me?! So here's the plan for the next several days:

1) Ativan was stopped tonight & oral Klonopin was put in it's place via the G-Tube.
2) Tomorrow, Depakote-IV will be stopped & begun via G-Tube.
3) Tomorrow, Breast milk should be started again in his new G-Tube, gradually increasing feeds as he tolerates (just like when he was first born).
4) Continue with EEG monitoring while the oral meds get back in his system to ensure nothing crazy is happening.
5) Continue to monitor his lung x-rays to verify the lungs are getting better.
6) Once we know he is stable with meds & feedings, as well as noticeably clearer lungs, we will attempt to extubate.

I think that covers just about everything that I discussed with Dr A. Johnson & the neonatologist tonight. We are all VERY happy to see Jacob going in the right direction, course we still don't have any idea what this means long term, we just have to take it day by day.

There is still a big question as to whether or not he will be able to breathe on his own effectively, only time will tell, but at least this time, we'll know that checking his C02 levels will be very important to make sure we don't end up where we were earlier this week.

He's also still not showing any good awake periods, however, as he starts getting off the Ativan, hopefully we'll start to see a change with that as well.

Overall Status: Good Day

Visitors: None

Dinner Provided By: The Stratton's

2005-08-25T16:59:00.000-05:00

I've said it once, and I'll say it again...what a difference a day makes! Jacob is doing MUCH better! Although he's still having 90-100 seizures a day, he is much calmer & not twitching near as much. How you might ask? The seizures he is having, are brief ones that don't always show externally. It's so nice to see him relaxed & sleeping soundly versus always moving around & never looking like he's in a good sleep.

They have also started to wean him off the ventilator!! His lungs x-ray was amazingly different today. Both lungs were clearly visible & much more expanded! By the end of today, he was getting 20 breaths per minute, down from 45; a rate of 20 for air pressure, down from 29; & 30% oxygen, down from 100%.

This is a HUGE difference...so much so, they are hoping to try extubating him tomorrow! Thank God!! It's thought to believe that he may have had an infection & since he was on antibiotics for surgery, it's also helped clear up the infection. I don't care what the reason...I'm just happy the near future looks a little brighter.

He is also no longer on the morphine or the two antibiotics, and they have removed the tube in his nose that was used for drainage since the surgery.

Go Jacob Go! Dr A. Johnson is much happier with Jacob's status. Again, he's still having a lot of seizures, but they are much more controlled in a lot of ways & not a life or death threat.

Overall Status: Much Better

Visitors: Cindy & Linda, Grandma & Grandpa

Dinner Provided By: The Curtis Family

2005-08-24T16:58:00.000-05:00

I spent the day at his bedside again. Since I can't hold him right now, I brought along a scrapbook project to keep me entertained. Jacob is still in a critical status. His lungs x-ray today was a big shock to us. His left lung is almost collapsed & his right lung is close to being. He has what's called a 'bell shaped' rib cage which is caused by the lack of proper lung expansion. He has a lot of fluid in his lungs, most of which is probably caused by aspirating prior to the surgery. We were told today that he may never be able to breathe without support. Argggg not something we want to hear.

He was hooked up to another EEG again today. Dr A. Johnson came to review some of it at his bedside & is very pleased with how the medications are working. He stated he looks better and when I asked define better "last week before we started Keppra, or before Sunday/Monday"; he said before Sunday/Monday, which is a good thing because the seizures he's having now aren't life threatening like they were earlier this week.

Once we can start putting fluids in his stomach again, which should be tomorrow morning, we can start trying some other medications. Since he is on an IV, there are only so many drugs you can try.

His night nurse turned off all the lights & closed the door to his room. Jacob really likes dark & quiet, he really calms down & goes into a deep sleep.

Overall Status: Critically Stable

Visitors: Colleen, Ivy, & Sara

Dinner Provided By: The Dilley's

2005-08-23T16:58:00.000-05:00

Wow, what a long day. Jacob's surgery went very well. They had a hard time intubating him. The first time, he had too much of an air leak around the tube & wasn't getting enough oxygen. They struggled getting the 2nd, bigger tube in & almost called off the surgery, however, they did finally get it. No transfusions were needed, thank God! I was getting a little worried as the surgery was only supposed to take 2 hours & we were creeping up to 3 hours before Dr Jolley came to tell us all was done, ok, & he was back in his room.

He was having quite a bit of twitching/seizure activity when he got back & Ativan wasn't really helping. They ordered another drug that is also part of the same family as the Klonopin, called Medazalam, that was finally on board about 5pm. It seemed to calm him a little more, but I'm still seeing some activity...sigh. He's also on morphine for pain.

Poor lil' guy has an IV in his foot & hand, an artery IV in his other hand, a tube down his nose, a G- tube in his belly, a bandage on his belly & his right quad, as well as on a respirator. Such a hard thing to watch.

He had quite a bit of swelling in his throat, which is one of the reasons they couldn't get him intubated very well. Swelling is also caused by him aspirating, which the Nisson Fundoplication will prevent from happening now.

When the EEG tech removed all the wires that he had attached for several days, the electrodes appear to have caused some scabs/sores on his poor lil' face...arggg

Kevin & I are pretty tired tonight & I'm not sure what my plan is for tomorrow, go to work, sleep in, or go see Jacob. So many hats to wear & not enough of 'me' to do them all!

Overall Status: Stable

Visitors: None

2005-08-22T16:57:00.000-05:00

Jacob had a really bad day today & we are emotionally drained. At 8:30am I called the hospital from work to see how he did throughout the night. I was scared to hear that he wasn't doing well. Since 6am he had 6 instances of bradicardia/apnea spells. Basically he would have a seizure that would cause his heart rate to drop & his chest cavity to tighten, causing him to stop breathing.

By the time Kevin & I got there by 9:30am, he had had several more. By Noon he was up to 15 or more of these events. It was very scary & we were uncertain what decisions we may have to make. Dr A. Johnson ordered that he be given a dose of Atavin, which is in the same family of drugs as Klonopin, however it's given via IV & is fast acting, but not long lasting like the Klonopin is.

The Atavin, thankfully stopped the seizure activity. It is now believed that Jacob's condition was progressing so rapidly that the Keppra was actually doing some good, just wasn't good enough. As the medication wore off, his seizures intensified & put him into constant seizure activity throughout last night. Dr A. Johnson put it this way: "his seizures were happening more often then he was able to rest". Once Dr A. Johnson was able to review last nights study, he came back & asked that we start a new medication called Depakote. This also looks like it's helping Jacob.

Dr A. Johnson thinks this might be Severe Myoclonic Epilepsy in Infancy (SMEI), also known as Dravet Syndrome. He hadn't mentioned it before because originally his seizures were so easy to control; now that they have progressed so much more, he's beginning to think it might be. At first, he said it couldn't be detected genetically, however, he then remembered that there is one gene where they can look for it.

When Kevin & I left at 7:00 tonight, he had had 3 doses of Atavin & one dose of Depakote. Although he is still showing signs of some seizures here & there, he is much more stable & thankfully, Kevin & I didn't have any life or death decisions to make today. Dr A. Johnson did reiterate today that he still doesn't feel as though they have done all they can do & just wants us to take it one day at a time.

We have received test results back from Wisconsin where they were testing for the Hyperexplexia Syndrome; this has come back 'inconclusive'. (figures) We have also received preliminary results from the Atlanta lab that is performing the spinal tap tests, these have also come back "although elevated in some areas, they are inconclusive".

As the doctor started to tell us the results, I jokingly finished his sentence for him. He laughed & I told him that I could be a doctor by now! Who needs nursing school or a doctorate? Just spend time in the NICU like I have & it's the best OJT you can get! Scary but true.

Kevin also made a funny tonight just before we left. He said, "somebody needs to invent wireless EEG's, where the electrodes use infrared technology". Wow...is that how we are going to make our millions? Get on it Kev!! *wink

Jacob goes in for surgery tomorrow morning between 10am-11am (PST), as long as he continues to be stable. Please keep say a special prayer for us during that time.

Overall Status: Critically Stable

Visitors: Grandma Cray, Grandma & Grandpa, Kerry & Jessika

Dinner Provided By: The Cray's

2005-08-21T16:57:00.000-05:00

I'll be so glad when this Keppra is out of his system. He had more instances of dangerous desaturations & heart rate drops today. Dr A. Johnson stopped by this afternoon to read the previous 20 hours of EEG information & reported that Jacob had over 100 seizures from yesterday afternoon until this afternoon.

I hope & pray these seizures are truly related to the medication & we aren't in for a really rough awakening come tomorrow.

Overall Status: Stable but Critical

Visitors: None

2005-08-20T16:56:00.000-05:00

There hasn't been too much change in Jacob's status. He's having well over 60 seizures in a 24 hour time frame. Dr A. Johnson was in today to discuss what the next approach will be. He is now feeling pretty confident that the Keppra could be the reason for the increase in seizures, seems how every time we increase the dose, the seizures multiply. We are going to wean Jacob off the Keppra by tomorrow morning. The medicine has a half life of 15 hours so by tomorrow evening it should be out of his system.

They were originally going to do a slower wean because they weren't sure what the side affects would be, however, my gut truly thinks the meds are doing him more harm, so I requested they wean him faster.

Jacob goes in for surgery Tuesday to have the gastrostomy tube put in, a nissen fundoplication performed, as well as a muscle biopsy of the right quad. He will need to be intubated & because his lungs aren't fully expanding, extubation could take anywhere from 3 days - 2 weeks (or longer), however, it's necessary for surgery.

Jacob is also having a harder time handling his secretions & I believe due to the medication, they have gotten thicker, causing a problem with his saturations. Sometimes it all gets stuck in the back of his throat, causes dramatic heart rate drops (to 40-60 bpm) and oxygen level saturations of 20-30%. VERY dangerous numbers.

That dang Keppra has caused nothing but more problems, I can only hope he starts to get better after this is out of his system.

He will continue to be on the EEG monitor until surgery so that we can keep a close eye on what the seizure activity is doing as he is weaned from the medication.

Overall Status: Stable

Visitors: None

Dinner Provided By: The Power's Family

2005-08-19T16:56:00.000-05:00

I arrived at the hospital at 8:30 this morning to give Jacob a bath. He still had all the gunk in his hair from the last EEG & with another one on the way this afternoon, we had to get it cleaned & ready.

He loves his baths! Eyes open wide for me today & I felt as though he was just soaking in what his mama looks like! It was a bit busy for him today. Dr Jolley, the pediatric surgeon came by to assess him & write orders for the prep work on getting the G-Tube done, i.e. x-ray to make sure there are no surprises.

Yesterday, I had informed Dr A. Johnson that I didn't think we were in any hurry to perform the surgery since it appeared Jacob wouldn't be coming home soon. Needless to say I was a bit shocked to see Dr Jolley this morning. Come to find out, there are only two opportunities for him to do the surgery, this Tuesday or next Tuesday, because he is going on a 3 week vacation. Although he has somebody fill in for him while he is gone, that I'm sure is perfectly capable of doing the procedure, I think I'd rather it be Dr Jolley. I already have a level of confidence with him since he performed Brianna's surgery.

Donna, his physical therapist was by. It was the first time in a week that she was able to work with his range of motion to loosen him up because of all the EEG's he's had this week. However, the EEG tech was there getting him hooked up today & we asked if we could please work with Jacob while these tests were running, which we now can.

His poor legs were so tight. As Donna worked with him, his whole body relaxed, as if to say thank you...I've been needing that for a long time! I did notice that after his legs were relaxed, he wasn't getting startled. He was really calm. Can't help but wonder if that might be a clue to what's going on.

The 'muscle' doctor also stopped by again to follow up with the procedure done on Wednesday. He wasn't able to get a good study of Jacob's muscle's at a relaxed state, so I suggested the possibility of running the tests again while Jacob is sedated from surgery. He thought that might be a great idea & is going to talk with Dr A. Johnson.

Dr A. Johnson also stopped by for a brief visit while EEG was getting him hooked up. I wasn't there at the time, but I don't think there was really anything that we need to discuss until tomorrow's EEG results are in.

The EEG tech hooking him up was not the same one that has done the others. She uses a different method of adhering the electrode's that is SO much nicer on Jacob. It sticks a lot better, but isn't pasty & no need for all the tape on his head. It can only be removed by using a special remover. What this means is, they can leave it all attached & run continuous EEG's without an inconvenience to Jacob. We will now be able to hold him while it's running, because the risk of the electrode's coming off is not an issue anymore. YAY!

Kevin arrived at 5:30 after work & we were watching the EEG monitor. Although I'm far from an expert on reading the monitor, I do know when Jake has a seizure. He had 4 of them in 45 minutes, so I don't think the increase in medication is making a difference. We'll just have to see what the results are.

Overall Status: Stable

Visitors: Grandma & Grandpa

2005-08-18T16:55:00.000-05:00

Today was a very moving day for me. God has put something in my heart that is truly amazing. While I don't want to go into too many details right now as my mind is still swarming with the ideas of how I want to make it happen, I will tell you that amidst all that we are enduring, my heart is searching for ways of how I can use this experience to help other families. Crazy I know, you'd think I would be concentrating entirely on Jacob, yet I ache to find a way to help other families deal with their own NICU experience.

This is something that has been brewing in my heart since Brianna, I just didn't have all the pieces to the puzzle until now. As I was in a cab with Brianna's nurse leaving Seattle Children's Hospital to come back home, she looked at me & said, Jamie, someday you will be helping other people. I don't know what you'll be doing, but someday this experience you are going through will lead to you helping others. Coincidence...I think not. Although life sucks right now in the eyes of motherhood & medically, through Jacob, God is making me stronger & leading the way. Could this be the 'why' we have been searching for?

There is a song that has been playing on KLOVE recently & the last 2 days it seems like it has been getting played a ton. I must have caught it playing 6-7 times today, on the way to work, at work, on the way to the hospital, and even coming home for the hospital. Earlier in the day, I was only singing the chorus, not really paying attention to the rest of the song. It was as if God was sending me this message all day & little by little I would hear more of it, until finally I really heard Him & listened.

The song is by Superchick, titled We Live. I encourage you to read the entire lyric, however here is the chorus:

We live we love
We forgive and never give up
Cuz the days we are given are gifts from above
Today we remember to live and to love

This is now Jacob's song. I find myself repeating the chorus in my head constantly. It's a reminder that I truly need to focus on the now, not what happened in the past or what may happen in the future.

I hope I can find the joy & feel privileged in knowing that God may have just sent me another angel baby.

Jacob's status hasn't changed. I had a long talk with Dr A. Johnson today about the results of the EEG. The number of seizures has not changed, in fact he had approximately 60 in 24 hours. He did say, however, that the seizures were in multiple areas of the brain on previous EEG's, but this last one they appeared to all be centrally located. He wants to double the Keppra one more time to see if it will stop them in this central area. It's not very hopeful, however, we'll never put him back on Keppra again, especially at this high dose, so we might as well try it now. He will go on another EEG tomorrow to see if the increase did anything.

If the Keppra doesn't do anything this last time, he will be weaned off it & by Tuesday a new drug will be tried. We are also working on getting a "Care Conference" scheduled for Monday afternoon. This meeting will include all of Jacob's care providers, Dr's, nurses, dietitian, physical therapist, etc. We will be talking about some tough issues, but it's necessary so the staff know what they need to do in certain circumstances.

I also felt much more comfortable talking with him about the direction Jacob appears to be headed & I feel like we are on the same page. He also said that the entire staff is so sympathetic to what we are going through, it's just not supposed to happen and doesn't. I felt as though we finally made a connection.

Although the big miracle we all want to see happen doesn't look like it will, I can't push aside the fact that a lot of little miracle's are, we just need to have our eyes open to see them.

Overall Status: Stable

Visitors: Cindy & Larry

Dinner Provided By: The Neuroth's Family

2005-08-17T16:54:00.000-05:00

I arrived at Jacob's bedside about 9am today. The Dr was already there for the EMG getting things setup. There are two ways they test the muscles, in both cases, there are wires attached to little strips of paper that are adhered to Jacob's skin. The first way is by using a probe that sends a shock similar to static electricity, the second way is using a needle that punctures the muscle & records what it does when it's relaxed & retracted.

Jacob was awake when I arrive, first time he had been that awake for a few days. Was great to see his eyes so open & alert. He was really checking out the Dr -- just wondered what was going through his mind -- quit poking & shocking me probably! hehe

The test took about an hour & a half. When all was said & done, the muscles appear to be normal. This means he doesn't appear to have any peripheral nervous system damage, it's all central nervous system. Finally, something positive.

After the test was done, I was going to head back to work. Then I remembered the tech would be down sometime today to hook him back up to another 24 hour EEG, so I decided to hold him for a while instead, since I wouldn't be able to later. Just as I got him all settled in my arms, the tech arrived. The look I gave her I'm sure spoke a million words! I asked if she could give me just 30 minutes. She said the Dr wanted it started 2 hours ago. I said, that wouldn't have been possible, he was undergoing the other test! She offered to come back after 15 minutes, I was persistent & said 30! She finally agreed & off she went. She ended up not coming back for an hour.

After the last couple of days, I knew Jake & I just needed some alone time. He calmed down as soon as he got in my arms, which of course makes me feel even more guilty for not being there more often, sigh. It was a sweet moment hanging out in our private room with the curtain closed. Very peaceful.

One thing I forgot to mention yesterday: While I was talking with Dr Parrish, I asked if she would get some primary nurses for him. Jacob needs consistency. It's very hard to report back to Dr A. Johnson Jacob's status if the same nurses aren't taking care of him, especially since I can't possibly be there 24/7. Today, his nurse on duty was asked if she would be one of the primaries, which she has agreed to! Hopefully this will help Dr A. Johnson tremendously.

Overall Status: Stable

Visitors: None

2005-08-16T16:54:00.000-05:00

Today was a rough day & I'm emotionally drained...so I'm going to bed. To those of you that check this before tomorrow morning, say some strong united prayers & I'll get the update posted in the morning. Until then, "May God be with our lil' man Jacob."

The next morning - I woke up this morning with a headache since I cried myself to sleep last night. I can't even begin to try & explain how we are feeling while going through all this again.

The results of the EEG are back, 54 seizures in 24 hours. Needless to say, we were stunned. Dr A. Johnson doesn't understand why the meds were working & now they aren't. I know that answer; because whatever this syndrome is, it's how it works. Seizures look to be under control on the surface, but the brain is still sending them off. It's the same way Brianna was. This syndrome worsens as time goes by rather then controlled or better.

Colleen was there while both Dr A. Johnson & Dr Parrish (neonatologist on duty), which I was glad for. It was a blow I wouldn't have wanted to take by myself, even though I held my head up during the conversation. As Dr A. Johnson continued to carry on about taking a more aggressive approach, trying new medications, continuing to run the tests that have been mentioned the last few days, etc.; I couldn't help but think out loud.

At what point do we decide enough is enough? How long do we allow Jacob to be a 'research patient'. Will we ever really find an answer or are we on paths that will lead to dead ends? Are the meds truly helping him or making him worse? Are we just prolonging the inevitable?

The doctors mainly just sat & listened. Dr Parrish was understanding where I was going with all the questions, however, Dr A. Johnson is still feeling like we need to keep trying, which I agree with...for now.

I brought up the possibility of brain surgery to remove the areas where the seizures are being generated. Due to the location of the seizures, which are in important areas of the brain, surgery isn't an option.

Once Kevin arrived after work, I asked that Dr Parrish come speak to both of us. I guess I just felt like I had more that I had to get off my chest & I didn't think it was fair Kevin wasn't there for the earlier conversation.

I started by crying, couldn't seem to say the words that were on my heart. Finally I just said...I don't know where to turn. I don't know what's right for Jacob & I just want to make sure everybody is on the same page. After the last conversation, I wasn't so sure that was the case.

She listened for a while before saying anything. Kevin asked if Jacob was considered critically ill; with Brianna, nobody ever came out & said it, Kevin read it in one of the daily progress notes written by a Dr in Seattle, so Kevin was just ready to get to the point. The answer, yes he is. What makes him critically ill is his lack of eating, lack of the ability to protect his airway, and his shallow breathing.

When asked what patients with advanced neurological problems, like Jacob, generally pass away of, her answer was breathing problems. Currently, the amount of oxygen Jacob is requiring, as well as the way he is receiving it, is not safe for a home environment. If he doesn't start breathing better, intubation is likely in his future, and if we want him home, that would mean a tracheotomy. With that said, I'm sure you now understand what we are really dealing with.

The current plan is to continue to treat Jacob's seizures by trying more aggressive medications that weren't tried on Brianna, while continuing to wait for test results that have been sent out. Dr Parrish also stated; because his brain is so busy triggering seizures, it doesn't have the time or energy to send off the signals that normally would happen, i.e. learning to eat or taking deeper breaths. So she is thinking if we can get the seizures controlled, we might start seeing some progress.

They doubled the amount of Keppra again last night. Another EEG was ordered for today to see what the increase in Keppra did. The spinal tap was done yesterday afternoon & is being sent off to a lab in Atlanta this morning & the EMG is being done between 9am-10am this morning.

I also asked Dr Parrish if the pattern for the next several days would be, increase/change the medication one day & EEG the next day, and if so, couldn't we just leave the electrode's attached & save him from removing all that tape every other day? She's finding out.

Jacob was moved to a private parent/baby room last night. Since he is very sensitive to stimulation, they felt it best to move him where a door can be closed & it's quieter. This also allows Kevin & I some privacy & a room to relax in that joins Jacob's room.

With all that said, I also informed the Dr's that as long as they are messing with medications, I don't want Jacob at home. Without knowing how he will react to them, I don't want to find myself in a life/death situation without the necessities to help him at home, nor do I want to send him home prematurely just to 'get him home', only to end up back in the hospital again like we did with Brianna.

So, it looks like he'll be there for quite a while longer. We are expecting the original test results back from Wisconsin by the end of the week, hopefully. Please just let the answers be provided to us. At least then we'll know what we're treating & how to best treat it. That's better then shooting in the dark hoping to find the target.

Overall Status: So-So

Visitors: Grandma & Grandpa, Colleen

Dinner Provided By: The Merriner's

2005-08-15T16:53:00.000-05:00

I went back to work today, my hours are 6a-2p. This will still allow me time with Jacob in the afternoon/evenings, while saving my maternity leave for when he is home. It was hard to go back, but I know it's what is best for right now.

Jacob was hooked up to another EEG today, beginning at Noon. It will run for 24 hours. He looked to be much calmer today, not near as many head/eye/mouth jerking movements. Hopefully that means the increase in the medication and/or the staggering of meds is working.

They are still trying to see if a lab in Portland, Oregon can do the testing with the spinal fluid, rather then sending it to Australia, so that is still pending. He is scheduled to have an EMG Wednesday morning. This is a test that is like acupuncture. It tests the tone in the muscles. Dr A. Johnson ordered this test be done because he's thinking his lack of muscle tone could be a factor with his shallow breathing.

So this week will be spent running more tests & hopefully we'll receive some of the previous test results back before the end of the week. Dr Jolley, the pediatric surgeon will be visiting us this week to discuss surgery for next week (most likely) for the G-Tube. They are also considering doing a muscle biopsy at the same time since Jake will be under anesthesia.

The geneticist came to chat with Kevin & I this evening about our family history to try & track down where this may be coming from. She concludes the same as Dr A Johnson has so far; based on our family history, this appears to be a 'recessive form' in that we are carriers the gene & it took the 2 of us to make this happen. She also reiterated that if that is truly the case, it's a 1 in 4 chance of it happening again. I'd say the odds are stacked against us.

Overall Status: Stable

2005-08-14T16:53:00.000-05:00

Not too much to report today. Jacob is stable & still sleeping a lot with the medication changes.

Overall Status: Good Day

Visitors: Kerry, Grandma & Sara D

Dinner Provided By: The Stillers

2005-08-13T16:52:00.000-05:00

Noni & Papa picked up Amanda this morning for the weekend so Kevin & I could spend some time together alone as well as with Jake. Jake is having a rough day. He's struggling to breathe & his blood has a trace of carbon dioxide. They have increased his flow of oxygen which will hopefully help him out a bit. We've also been placing him on his belly which appears to help him breathe better.

Dr A. Johnson stopped by to tell us the results of the EEG. He's been able to review 15 of the 17 hours. Jake had 13 seizures in those 15 hours, however, the video portion of the test failed so he was unable to tell us what movements he was making at the time of the seizures. He also stated that most of them occurred between 11pm and 4am. Once he received his medication at 5am the seizures stopped & he was relaxed. He's ordered that the medications be staggered a bit to see what happens with the seizures then. He'll receive medication every 6 hours now.

He's also doubled the Keppra medication in hopes to decrease the Klonopin, which he believes is the reason for the respiratory distress and he's ordered another EEG be done on Monday.

That's about all to report for today. Hopefully it's just a little hurdle to get over & more good days are to come.

Overall Status: So-So Day

Visitors: Laura

2005-08-12T16:52:00.000-05:00

Today was a mild day with nothing really to report. He was removed from the EEG & I gave him his 3rd bath, which he loved. He also proceeded to poop on the towels again, yet I escaped!! Still pending the results of the EEG. They weren't able to get the spinal tap done today because they were still awaiting a call from the lab in Houston to make sure it was done correctly. It has been rescheduled for Tuesday.

Have I mentioned lately how much I really hate this?

Overall Status: Good Day

Visitors: Barb & Nicole

Dinner Provided By: The Priddy's

2005-08-11T16:51:00.000-05:00

I can't believe it's been 2 weeks today since this journey began. It's been full of ups & downs that's for sure. Today seemed to be a pretty down day. I guess after 2 weeks of trying to hold my head up high, I finally collapsed. It's been quite an emotional one for me, as I just can't seem to keep it together. He's so sweet & innocent, I just can't stand dealing with this. I'm not ready for what the future might have in store for us.

For the last couple of days, Jacob appeared to be doing well, however, I began to notice some increase in head & mouth movements. Today it escalated & my gut just told me something isn't right. I clocked him for 2 hours & 20 minutes; constant head movements, jerking back & forth as he tried to fall into a deep sleep. He looked so uncomfortable & at times would let out what I would call 'his cry' as if to say "make it stop, I'm tired & just want to go to sleep".

After he finally got into a deep sleep & all parts of him were relaxed, I called the nurse over & said I wanted to speak with the neurologist. It took a few hours to track him down. When he arrived, he could tell I was distressed about something. I explained to him what was happening since he last saw Jacob. As we talked, it aroused Jacob & he began to twitch again. Head jerking back & forth, eyes jerking, mouth twitching. Dr A. Johnson observed for a few minutes & then asked that I un-swaddle him so he could thoroughly examine him.

Although Jacob's arms & legs were fairly stable, his head wouldn't stop. It was decided to get an EEG hooked up right away to see what was going on, which will run for 17-18 hours. It's unclear if they are seizures or not & he also stated that it's possible his movements are just migrating to different areas of his body. Grreeaatt

He also ordered the spinal tap be done tomorrow, as well as some more blood work for additional testing. He also wants to look at the area of his blood that came back abnormal the last time to see what it looks like now. Apparently it should be zero, meaning you shouldn't see it in the blood at all; Jacob's level was 16, clearly abnormal. Looking at this again, might offer some more clues as to what's going on.

Once the spinal tap & blood work is done, he will add Keppra to see if it helps with the myoclonic movements.

The good news is Jacob was alert again today & did take another 3 cc's by bottle; still not much sucking going on though.

They also decided to increase his oxygen to 100% & decrease his flow to .1 liter. This is a more standard mix for him to go home on, should he need oxygen, which I'm guessing at this point will be a given. We also talked a bit about the G-Tube today. Although we still don't want to do it right now, most of us are getting prepared for the fact that it most likely will need to happen in order to bring Jake home.

I can only hope we'll have some answers soon...if only I had that magic crystal ball.

Overall Status: So-So Day

Visitors: Jared & Sara

2005-08-10T16:51:00.000-05:00

I'm so happy to report another mild day in the NICU! Jacob had his usual alert times around feeding time & is continuing to show signs of sucking/swallowing. In fact, at his 5:00pm feeding, he ate 3 cc's by bottle! By the way, for those that are wondering, 1 cc=1 ml; 30 cc's = 1 ounce. So it's a very small amount but it is for sure a start. Although most of it was from the bottle dripping in his mouth, he did clamp down on it a few times & he didn't choke on any of it. I heard good swallows. I didn't see any Dr's today, so nothing more to report there.

While the occupational therapist was there today, he was alert & relaxed. He was doing so well that we had to decrease his oxygen & put him on room air for a while! Yippee!! Although when he went back to sleep, we had to turn it back on...he just gets too comfy while sleeping.

Jake & I rested in the lazy chair most of the day while visiting with our friends & family that stopped by. I did browse through some new scrapbook magazines while we hung out & even managed to strike up some conversations with a few NICU staff who are interested in attending Crop for Cancer this year...yahoo!! Speaking of, if anybody reading this lives near Anchorage & loves to scrapbook, I've got tickets & they go on sale August 15th! *wink

Well I think that's about it for this entry, let's hope for some more progress tomorrow!

Overall Status: Good Day

Visitors: Heather, Grandma & Grandpa, & Becky

Dinner Provided By: The Cagley's

2005-08-09T16:50:00.000-05:00

The increase in Klonopin appears to be working. Jacob's jitteriness decreased by late afternoon. He also had a big alert time from about about 11:00 - 2:00, where I worked with his suck/swallow quite a bit. I started using my finger so I could get a better feel for what he was doing. As I depressed his tongue, he would suck! If I depressed just behind his chin, he would give a good swallow. So I'm convinced that he has what it takes to do it, he just needs some practice! While I was working with him, his mouth area was less over-stimulated with no noticeable signs of jitters, big difference over yesterday.

Dr A. Johnson stopped by for another visit about 4:30, after he was very sound asleep. He was very impressed with the changes in his muscle tone over yesterday. The original plan was to increase his medication a little bit each day, after seeing him today, he's decided to leave it as is.

Jacob does appear to breathe a lot shallower while in a deep sleep, which requires him to have more oxygen. Dr A. Johnson said that we may have to make a compromise, see more jitters or have respiratory issues. We'll see what Jacob does over the next few days on the new dose.

He is feeling more & more confident that we may be getting to the bottom of this. He does feel that this is a 'recessive' mutation, meaning it took the exact 2 people to cause this. Like a 1 in a million chance of it happening again. He said the chances of it happening again to us is likely about 25%. It was just the right 2 genes at this given time between Kevin & I to cause the syndrome. Hopefully that made some sense to everything reading this! He explained it much better then I am!

He did mention that Jacob will most likely come home on a saturation monitor, so that we can keep an eye on his oxygen levels, which means he may come home with oxygen as well, maybe not for us to use all the time, but to at least have it here in case it's needed.

He's also been in contact with a Dr in New York that is very familiar with this disease. He's trying to find out where he can send a spinal tap for testing. Apparently, the spinal tap will give a more conclusive result then the blood test. Not sure how that all works, but that's what I know! Hopefully he'll get that information soon so it can be sent out & maybe return about the same time the other test does.

It was great to see him awake for such a long period of time. He cooed a lot & I think even let out some cries when it was around feeding time. There were a couple of other babies that seemed to cry a lot today & I think he reacted to that too. It was fun to listen to him!

Well that's all for today, more good news & more 'wait & see'.

Overall Status: Great Day

Growth Stats:
Weight: 6 lbs 12 oz

Visitors: Colleen, Mary M. & Celeste

2005-08-08T16:50:00.000-05:00

Jacob had another good day today. His muscle tone was more relaxed over yesterday. He was stretching out his legs on his own & didn't give me much resistance when I stretched his arms over his head. His oxygen levels were very good with no dips & they may drop him down to .2 liters this evening. His feeds have increased again to 55 cc's every 3 hours. His umbilical cord is about ready to fall off too! Dr A. Johnson, the pediatric neurologist, stopped by today to ensure that the lab work was done for the 2 genetic tests, as well as to check in with us to see how we felt Jacob was doing.

After chatting with him a bit, it was decided to increase the Klonopin a bit higher then the original dose. The goal is to get the myoclonic movements a little more under control, without compromising his breathing ability. Dr A. Johnson feels that he may be having myoclonic movements in his lip/cheek muscles, which could be prohibiting him from wanting to suck/swallow.

The nurses have begun to nipple feed him with a bottle to see what he does with it. The first try was during the 2:00 feeding. Although he was very aware that something was there, he didn't do much with it. He moved his tongue around, made a very weak suck attempt & some funny faces. The nurse did consider it as having an interest though, which is very promising. During this attempt, he was stimulated quite a bit & his lips began to quiver. I wondered if it may be a seizure, but when we pressed our fingers on his chin, the movements stopped. Had it been a seizure, you wouldn't have been able to stop it. This proves the theory of the reason why he may be lacking in the suck/swallow category.

The next several days may appear to be a bit of a setback with the increase in medication. The hope is that after the medication levels out, he will be back to waking up, have less or no myoclonic jerks & continue to show signs of eating. Depending on how well he tolerates the increase in medication, he may need to be intubated to get him 'over the hump'. Time will tell.

Both the Dr & I agreed that it was much better to try out this increase with him in the hospital then at home since he has 24/7 nursing staff. We also decided we wouldn't try the Keppra at this time & see what the Klonopin does instead.

One thing that I keep forgetting to mention, after reviewing the CT scan & MRI again, the Dr's have concluded that since the amount of brain atrophy is so minor, they are considering it normal. If you were to look at a perfectly normal person's brain, you might find the same amount of differences.

So far, I'm very pleased with Jacob's progress, and even though there may be a few steps back over the next several days, I have hope that things are looking better. The doctor told me today, the only thing keeping Jacob in the hospital right now is his lack of eating, & since nobody is wanting to rush to the surgery room to place a G-Tube in his lil' tummy, we'll just need to give him some time to respond & learn how to eat.

"If you permit yourself to let go of your worries, placing them in God’s hands,
trusting HIM completely, HE can truly lighten your load."

Overall Status: Good Day

Visitors: Pam, Melanie, & Sara

Dinner Provided By: The Keffalos Family

2005-08-07T16:49:00.000-05:00

Kevin & I didn't get to spend too much time at the hospital today, which of course, I feel guilty about. After church, Amanda's nap, etc. it was 4:30 before we got there. The nurse reported that he's had a great day! He's waking up just before feeding time & showing signs that he's hungry. She caught him moving his hands to his mouth & making some sucking gestures too! Since his next feeding was at 5:00, I worked with him using the pacifier; it took a little while to get him to open his mouth & once I had it in there, he did chomp on it a few times...nothing spectacular, but at least a start.

They also lowered his oxygen level this morning to .3 liters & he was tolerating the lower dose just fine! Here's hoping we can get him weaned off of that soon. Aside from that, he had an uneventful, quiet day.

Tomorrow morning the Dr on duty will be calling the lab to find out if they can run the test for Coffin-Lowry Syndrome at the same time they do the Hyperexplexia test. If all goes well, we'll meet the 1:00pm deadline tomorrow.

I had to force myself to go to church today, 1) because I was really tired & 2) because I'm still struggling with leaning on God right now. When I arrived, I found myself trying to avoid people I knew just so I didn't have to face the fact that I wasn't pregnant anymore, let alone hearing the next question "where's the baby?". After a failed attempt to avoid somebody, I realized I can't hide from those that are trying to reach out.

As we started to worship, the tears began to fall. "Show me the path. Give me direction, the doctors wisdom & Jacob the strength to get passed this. It doesn't matter if he's not perfect, he's just as you made him. All I ask is that you allow him to stay on earth with us & teach all of us the patience we'll need to care for him." This was my prayer.

A few minutes into worship, one of the singers made her way to the front of the stage & begins to tell a story, a story of her now 28 year old daughter, who is autistic. She went on to share how much God has changed their lives with the ups & downs of learning how to deal with an autistic child. One who can't speak, knows very little sign language, and uses body language to communicate most of the time. As I listened to her tell this story, I sobbed. I knew then, this is why I'm at church today. God wanted me there to hear this.

It's amazing how He uses other people to remind us to lean on Him, even when times are rough & we don't understand the why's, God knows what He's doing & He has some good to come out of this, even if we can't see it now.

Overall Status: Great Day!

Visitors: Kathy Beelmann; Grandma & Grandpa

2005-08-06T16:49:00.000-05:00

When I arrived at Jacob's bedside today, Dr Avila was there reading over all the documentation that Dr Jacob provided for the Hyperexplexia test. He was in awe of what he read. He thinks we might be on to something & reassured my initial reaction, that yes, we need to have this test done. Aside from the physical features that match this test, there is something that has come back as abnormal in his blood that also plays a factor with this disease. Could we really be on to something here? My only hope is that the test yields a positive result & is the 'sporadic' version vs. the hereditary version. Dr Avila also interpreted the information as I did, in that it appears that this disease only affects the first 1-2 years of life & the children are normal. Yes, there may be developmental delays, but they are by far, mentally retarded or anything of that nature. I can only pray that God will bless us with this & finally provide an answer.

There is another disease that the pediatric neurologist would also like to test at the same time, Coffin-Lowry Syndrome, that he informed us about yesterday. Dr Avila stated that the difference between the 2 Syndromes is 1) Coffin-Lowry is prone to have seizure activity (more so then Hyperexplexia) and 2) instead of becoming stiff later in life sporadically, the patient becomes floppy. While I didn't get the chance to read the information about this disease at the hospital, I started doing some research on the internet last night. From what I can tell, this disease doesn't match up at all in either case, so I'm a bit perplexed. Maybe the documentation that is at his bedside will help me understand why they feel Jacob fits this profile.

I gave him a 2nd bath today while Amanda was there. He woke up & not only did he pee all over his bed before his bath, he proceeded to poop all over the towels afterwards...and as I put his fresh diaper on, he decided to finish the job. However, in case you were wondering, he didn't get me at all.

Amanda is such a proud big sister. She was very excited to see him again & yes, the first words out of her mouth were "Handsome Boy Mommy"...that's my girl!!

As for Jacob's progress today, he had multiple alert times & tracked voices very well today. Things are for sure looking up.

Overall Status: Good Day

Visitors: None

2005-08-05T16:48:00.000-05:00

First, I think it's important that I give a big thank you to everyone that has either sent us an email, signed the guestbook, visited us, sent us something in the mail/flower delivery, and/or is reading these updates. Although I may not respond to each email or guestbook entry, know that your words of encouragement are very much appreciated. When I'm up at 2-3-4am taking care of business, i.e. feeling like a cow--mooooooo, I always tend to check my email & read the evenings messages in the guestbook. Nothing makes me happier & more relaxed as I head back to bed, knowing that we truly aren't alone in this & that so many people are praying for our family. So to our family & friends & the hundreds of you we don't know, THANK YOU.

It was another day in "Vegas"...as a friend of ours called it when he came to visit the other day, referring to all the alarms going off & lights flashing every now & then as the babies need attention for one reason or another.

The nurse informed me that Jacob had a long awake period this morning, and yes, I missed it. DANG IT! He was looking around quite a bit & talking back at her as she did her every 3 hour cares on him. They increased his feedings to 50 cc's today & he's tolerating it very well. I brought in his fuzzy blanket to keep him warmer, hopefully he can get off those heat lamps for good now!

I spent all afternoon holding him in a lazy chair with my feet propped up; even took a little snooze! Kind of hard not to when you have a baby bundle warming you up. Once daddy arrived, we put him back in his bed to change his diaper & check his temperature. Low & behold he decided to wake up for us! It was the first time Kevin has seen his eyes open since the moment he was born! Grandma & Grandpa also came to visit & got to see the lil' guy awake.

I did chat with both the neonatologist & the pediatric neurologist regarding testing for hyperexplexia. Without going into major details that I can't explain, we are still trying to determine if the test will be beneficial. The Dr that is in charge of the lab that does the testing in Wisconsin, doesn't believe Jacob's case will give us a positive result. Apparently there are 2 versions of this disease, 1) sporadic, just all of a sudden appears in families, & 2) hereditary & is common in families. The sporadic version has been pinpointed to a specific gene in the DNA, the hereditary version has not, so it ends up being a 10% chance of diagnosis. What's crazy to me is, doesn't hereditary have to start somewhere? At what point is it considered sporadic vs. hereditary? In my opinion, my case would be sporadic, as there is no family history whatsoever, but then again, when is it considered hereditary?

The test is $400, which is chump change considering how much the bill is on a daily basis with Jacob being in NICU, so that's not really an issue. My gut is telling me go with it & I'll have an answer in 7-10 days. I'll talk more about it with the Dr's this weekend & with Kevin. By Monday we'll have made a decision.

When Jacob first arrived in NICU, the neurologist felt this is what it may be, however, after he's seen Jacob for a week now, he's not so sure, but has no problem with having us run the test anyways.

He's also going to start him on a 2nd medication, Keppra, on Monday that he's hoping will help control his tremors a little more. Course it also causes sedation, so we may be back to square one next week with waiting for Jacob to level out & start waking up again...it's such a vicious cycle.

Overall Status: Good Day

Growth Stats:
Weight: 6 lbs 9 oz

Visitors: Celeste, Brooke & Cindy, Terri, Grandma & Grandpa

2005-08-04T16:48:00.000-05:00

Today was another mild day for Jacob. They have been trying to wean him off the heat lamps for the last day or so, but today he just couldn't seem to keep his temperature up, so they had to turn the lamps back on. They have however, moved him from one side of the NICU to the other side, which signifies that he's more stable & no longer necessary to have him on the 'critical' side. He did have some alert times today & I got to see his eyes a bit more. The swelling has gone down tremendously as well, we are thinking he may have had an allergic reaction to the medicine used for the eye exam.

He's up to eating 45 cc's every 3 hours & tolerating it very well. Since he is still on the nasal canula, they have moved his feeding tube from his nose to his mouth.

During his awake times, I worked with him on sucking the pacifier. Although I didn't get much response from him, he did grab a hold of it & give it a couple sucks. I also noticed that he's swallowing pretty good. All good signs that eating the right way just might be in his future. We also got some 'scrap' worthy hand & feet prints for his scrapbook.

Now on to something very interesting. Yesterday while I was reviewing the Dr's notes in Jacob's chart, I came across something that the pediatric neurologist said; he thinks Jacob may have something called "hyperexplexia" (stiff baby syndrome) which is a neonatal version of "stiff-man syndrome". After reading this, I decided to do a bit of research on my own to see what it actually means. I was amazed at what I read. Here are two links that talk in detail about the syndrome:

http://www.sbs5.dircon.co.uk/medtext/hyperex.htm
http://www.medterms.com/script/main/art.asp?articlekey=8297

To me, this fits both Brianna & Jacob almost exactly:

exaggerated startle response (Jacob)
hypertonia (stiffness) diminishing over the first year of life (Brianna & Jacob)
strong brain-stem reflexes (especially head-retraction reflex) (Brianna & Jacob)
some cases, epilepsy
hiatal hernia (Brianna; no testing done on Jacob yet to determine if this is an issue for him as well)

Other interesting points about the disease:

The evolution of the disease is characterized by a delay in reaching motor 'milestones' (for example, walking).
The hypertonia is reduced during the first two years, but abnormal reactions such as involuntary starts remain after the slightest stimulus.
hypertonia is linked to a hyperactivity of cortical neurons
evolution of the disease is benign when treated
There is neither mental nor neurological deficiency.

So today, I tracked down the neonatologist & asked him some questions about it:

Why hasn't the pediatric neurologist mentioned this to us? Why did I have to read it in the report to find out about it?
If he is leaning towards this, has he ordered the test for this exact DNA to determine if this is 'the one'? If not, how come?

The neonatologist was intrigued & appreciated me being so persistent about it. When I mentioned all the things that I had read & how it matched up with both Brianna & Jacob, he was very interested. He was going to do some research on his end this evening & get back to me tomorrow morning.

I never heard this terminology with Brianna. For such a rare disease, it amazes me that the pediatric neurologist has chosen this as the possible answer. How did it get missed with Brianna? I find it very fascinating.

There are a couple questions I have that I couldn't seem to find answers for on the internet:

What developmental issues do the patients with this disease have?
Was there atrophy of the brain?

I hope to have some of these questions answered tomorrow. Wouldn't it be nice to at least have a diagnosis?

Overall Status: Good Day

Visitors: Pastor Keith Lauwers & Colleen

Father's Love Letter
Pastor Keith Lauwers gave me this today.