Journal the Journey

Inspired by Baby Jacob Designed by Jamie Aldridge

Our dream as parents is to have children that are born completely perfect.  When we are blessed with a different reality, we often times aren’t sure we can endure it.  Jacob Tyler was born on July 28, 2005 with an unknown seizure disorder.  His parents, Kevin and Jamie Aldridge, have already survived the journey of losing one precious child, Brianna Renee, to the same disorder and know the struggle first hand.  Sadly, Jacob joined his big sister, September 20, 2005.

Where some might find no strength to walk the journey again, especially after having a perfectly healthy daughter, Amanda, born after Brianna’s death, Jamie is able to find some peace in journaling Jacob’s daily progress.  Through him, she has been inspired to share with us the ups and downs, successes and setbacks.  Her journal entries are therapy for her and those that are a part of her family’s life.

In the midst of watching her little one struggle, Jamie felt led to find a way to help other families.  She believed in her heart that if everyone had a way to document what they were going through, the healing process would be so much easier for them now and in the future, too.  Thus the reason for Journal the Journey.

We all have journeys that leave a lasting impact on our lives.  These journeys come in all forms and can be happy, sad, dramatic, funny, exciting or a combination of many experiences and emotions.  Each journey teaches us a lesson and most often we want to remember as much about the journey as possible.  Journal the Journey is an album kit that helps you remember in more detail, the moments of the special journeys you have experienced.

Imagine a father deployed while his child is born, imagine the gift he would receive if the mother were to journal all the feelings, emotions & trials she faced while having to walk the journey without him day after day, allowing him to get a sense of what he truly missed.

Imagine the joy on the parents’ face of a journey written in their own child’s words of the ups & downs they’ve faced while dealing with a serious illness.  What a treasured gift they would have for a lifetime if the child doesn’t conquer the battle.  Imagine the confidence & self esteem the child would gain by re-reading the trials & tribulations they faced & how they overcame them.

Other journeys might include: High School Senior Year, First Year in College, Faithbooking, Marriage, Divorce, Adoption, Difficult Pregnancy, Loss of Friend or Family Member, and many more.

This kit was born out of one mom’s desire to help other people document the journeys that grow them as people.  Whether it be one of pain or one of hope, we all have experiences that are a part of who we are and who we will become.  May this kit help you to journal your journey, whatever it may be.

Thank you, Baby Jacob, for the inspiration you gave to your mommy and the impact Journal the Journey will have on lives around our world.

What previous or current journey are you going to journal?  What about the journey you might help your children journal?  Do you know somebody that needs a way to express what they’re going through?

Join us in carrying out what we 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 us.

Included with each kit are Jacob's footprints, help us to spread them across this country & allow him to continue to touch more lives then anyone could imagine.

Journal the Journey is an 8x8 scrapbooking kit that reminds us of 14 words to live by; Courage, Love, Trust, Honor, Family, Truth, Charity, Loyalty, Unity, Passion, Joy, Kindness, Humor, and Hope.  The kit includes everything needed to complete a wonderful 20 page album that documents life’s special journeys experienced by all.

Use the link below to purchase your order own Journal the Journey kit.

Thank you in advance for your thoughts, prayers, & support. 

Pictures of Brianna

Obituary printed in Anchorage Daily News, Saturday, June 22, 2002

BRIANNA RENEE ALDRIDGE, 5 months, died June 16, 2002, at Providence Alaska Medical Center.

A helicopter ride will be taken at 1 p.m. today to Mount Susitna to scatter her ashes. For those who would like to watch, they may do so from Point Woronzoff.

Brianna was born Jan. 6, 2002, in Anchorage.

The family stated: "Brianna has touched the lives of so many. She will be missed greatly. Although she never cried, she's singing with the angels now. Please visit her tribute Web page at: home.gci.net/~kevinandjamie/Brianna/Brianna.htm.

Survivors are her parents, Kevin and Jamie Aldridge; grandparents, Larry and Judy Hancock, Darius and Marjorie Aldridge, and Vicki and Paul Matusewic; great-grandparents, Alexander Buyers, Lillian Bertuccelli, Richard and Alice Hancock, Jean Hancock and Jay Matusewic; nine aunts and uncles; and five nieces and nephews.

Memorial donations may be made to Credit Union 1, 3500 Eide St., Anchorage 99503.

June 22, 2002 - Rest in Peace Brianna

FORGET ME NOT

~Author Unknown~

Forget me not
When I am gone.
My memories in stone.
When day is done
And you are all alone
Forget me not
For good times shared.
The nights we were but one
Forget me not.
With each rising moon
And the setting of the sun
Forget me not.
As you grow old
The days, they just seem longer.
Remember with each passing moment
My love for thee is stronger.

All I can say is wow...what a day. It's midnight here & I'm still up. Just got done taking pictures of the beautiful sunset we had tonight (11:30). We did have some clouds over the mountain at 1:00, but tonight it was a beautiful sunset.

To look over there & 'see' my sweet baby girl laying there peacefully is just so calming. Brought tears to my eyes.

Today, there weren't very many tears. Although it was sad, it was a very happy day. Why, you may ask? Relief. I know she is in a better place. She is overlooking the most beautiful scenery I have ever seen.

We landed on Mt Susitna's head, in a spot that we knew we couldn't miss from far away. We got out of the helicopter & immediately saw a rock sticking up in the middle of nowhere. Perfect we said. A rock just for her. So we got in front of it, Kevin opened the urn while I opened the keepsake container that had the Alaska state flower, Forget-Me-Nots, & Pacific Northwest wildflowers in it.

We each spread the contents at the same time. The breeze was just enough to spread them all around. Did I cry at this point. No. I was so free. Free of pain for her, free of ups & downs, free of never-ending hospital stays, just free. Seeing the wind pick her up, I knew that she was free as well.

I picked some wildflowers that were blooming there along with a small rock, to keep in the trinket that had the Forget-Me-Nots in it. Just a little keepsake to treasure of our journey.

As I sit here typing this, I am crying. Maybe it's because it just hit me.

Brianna has done something for all of us. She has brought hundreds of people together. She has given us strength that nobody can explain into words. She is how I have made it through this. She truly was an Angel sent from God.

Brianna brought me many firsts. My first child. My first hospital stay. My first lear jet ride. My first helicopter ride. My first look into what life is really all about. But most of all, my first Angel.

I would like to share a poem that a coworker of my mom's wrote for her 8 year old son when he fell off of Flattop mountain while hiking & died. She has modified it for a little girl.

The Littlest Angel

The littlest angel in heaven
Loves puppies and rainbows of fun
Heaven will never be just as it was
Now that her life there's begun.

She'll turn fluffy clouds into snowmen
And swing on the stars up above.
She'll turn golden streets into playgrounds
And fill up God's home with her love.

She'll make dandelions out of sunbeams
And find grassy meadows for playing
Her laughter will ring where great choirs sing,
But she'll hear me whenever I'm praying.

The littlest angel in heaven
Is the one I am longing to see,
For the child that belongs now with Jesus
Is the child that belonged once with me.

I love you Brianna with all of my heart. Every time I close my eyes I hear your tender voice & see your sweet beautiful face. Mommy & Daddy will greet you again at Heaven's Gate, but for now, we will just have to wait.

Thank you all from the bottom of my heart.

Kevin, Jamie, & Sweet Angel Brianna Renee

Brianna's Guestbook

View Guestbook

Mommy and Daddy

Author Unknown

I have left you now,
But please do not cry
For I am with God,
And with great Joy I am here to tell you

I am your special angel
On the wings of pure love
One of exquisite beauty
From heaven above.

I have been sent to you
Just so you will know
I care so much about you
And wanted to tell you so.

I am your special angel
To call upon as you need me,
even though you can no longer see me
To comfort, love, and guide
In everything you do.

My soft wings will gather
Close around your soul
When you feel that touch
from "no where'
Then you will know.

I have promised to protect you
To keep you safe from harm
To take away the dark fears
To make your heart light and warm.

Trust in me - your "angel"
And you will feel me all around
In your time of loneliness
Is when I will be found.

5 Months 10 Days - Farewell Sweet Brianna

Kevin & I have been camping out non-stop at the hospital. They have moved us to a private room where we are the only caregivers for her. I gave her a bath today & she smells really good now. Family & Friends have been coming by to visit & keep us company. It has been a rough couple of days.

Later on…

Brianna gathered all of our family together tonight to say her farewells. I had either received a phone call 10 minutes before or 10 minutes after from family members that could not be there. All other family members were present when she passed. We were getting her ready to go outside for some fresh air. I had just put on some socks to keep her feet warm. I lifted her up from Kevin’s mother, gave her a kiss on the cheek & took a look at her. I began to hand her to Kevin, when I stopped to look at her again & noticed her eyes were open. I said ‘Kevin her eyes are open’, then I heard her take her last breathe. I looked at Kevin & then her again, & began to cry even harder. There were 2 requests that I asked of her, that she open her eyes one last time so that I can see them, and that Kevin or I be holding her. She did one better, we were both holding her.

Kevin & I stayed with her for 3 hours after she passed. She looked so peaceful. I know that she is not hurting anymore. Like my mom said ‘She never cried, but she is singing with the Angels now.’ How true that is. She will forever be my guardian Angel.

Died June 16, 2002

8:40 pm

15 lbs

24 1/2" Long

5 Months 8 Days

Brianna still hasn’t woke up. Her Phenobarbital Level is now in the 70s. We would have thought she would have been awake by now. We did a CT Scan today & found out some very disturbing news. Brianna has a massive hemorrhage in her brain. She is classified to be in a coma & will never wake up. The Neuro-Surgeon came to talk with us & said there was nothing surgically that could be done to help her. It was only a matter of time before Brianna wouldn’t be with us anymore. It could be anywhere from a couple of days to 2 weeks. We are hoping for the shorter time frame.

5 Months 6 Days

We took Brianna back to the hospital today. She has been asleep since Saturday morning. Her Phenobarbital Level was 120 on Monday & she is beginning to have respiratory failure. They had to put her back on the nasal CPAP to help her breathe. We are hoping we will only be there a day or two, just long enough to help her get over this hump & wake back up.

4 Months 21 Days

The past week & a half has been pretty rough. She was taken to the operating room to have the breathing tube taken out on Thursday. The doctors were pretty for sure we were going to have to do a tracheotomy. They thought there was a pretty severe obstruction in her airway since she was so hard to intubate in the first place.

They put a scope down her throat to check things out...and GUESS WHAT?!? All was PERFECT! Not a thing wrong. She came out of the OR with no breathing tube & no trach! We were so excited I could hardly contain myself.

Oh and about her seizures. The shots are WORKING! Her Phenobarbital level was 77 a couple of days ago. Now, as you may recall we were trying to keep that between 90-100. We are now weaning her off of her medications too! Can you believe it?!?! The ACTH shots were just what she needed. No nasty side affects of medications anymore (like too much sleep time!)

She is having wonderful alert time & sleep times. Talking up a storm! In fact, Saturday night she decided it was her turn to keep us (me) up. She talked all night long & then slept most of the day on Sunday. Crazy girl! She has got it turned back around the right way now though.

She is doing so well that we came home Saturday afternoon & she is almost completely weaned off of the oxygen! She went 9 hours today without ANY whatsoever. I plugged her back in this evening because she started to show some low numbers & I wanted to give her a break throughout the night. But 9 HOURS!!! Prior to this, she wouldn't even last an hour before needing the oxygen again, so this is major improvement. This included taking her for a ride & having to be in her car seat. Which normally she doesn't do very well in her seat.

Lets keep our fingers crossed that the shots continue to work. Normally these shots are only a 2-4 week treatment. When you stop them, the seizures are supposed to be under control for a while, sometimes forever. If the seizures continue, you repeat the treatment. We are not sure what is going to happen in her case, seems how hers are so hard to control. Only time will tell.

Thanks for all of your continued prayers. I'll send another email again soon.

4 Months 10 Days

...back in the hospital. We took her back yesterday morning. She was having more bradicardia episodes (stopped breathing). She had them at the hospital and they have re-intubated her. Ironically we were heading there to see the Pediatric Neurologist from Seattle anyways, so he got to see her at her worst.

Once she stabilizes again, they are going to try hormonal steroid shots to try & control her seizures better. If that doesn't work, then we are going to try the Ketogenic diet. The shots will take about 2 weeks to get an idea on whether they will work or not. The diet will take a month or 2. So we are looking at a while before we will know for sure.

She will at least be in the hospital for a week while they start the shots. Kevin & I are pretty devastated. I go back to work on Monday & we just moved into our new home this past weekend. All was looking pretty good, & now we have another set back.

Well...off to the hospital. Please keep us in your prayers.

6 Days Shy of 4 Months

The past 2 weeks have been pretty rough. She has been sleeping 23 ½ hours a day & having bursts of seizures throughout the day, 1 every 5-10 min. I called her pediatrician on Thursday & said we have got to do something. What good is it doing having her all drugged up & I’m still seeing seizures? So, he called down to Seattle on Friday & they recommended another drug. When he called me back on Friday, she had been awake for most of the afternoon!

I went & got the prescription filled anyways. The past 4 days she has done a complete turn around!! Awake all day & I’m only seeing 2-3 seizures A DAY! So I called her pediatrician on Monday & told him the great news. Also mentioned that I DIDN’T start the other medication since she started to come around. He was happy with my decision. I also suggested that we should go get a blood level check to see where we stand with her medications so we know where we need to target her in the future. He said “great idea”.

So I went Monday night & got that done. We are still pending her Topomax level (takes about a week). Her Phenobarbital level was 96.7 (targeting 90-100).

I am just so happy she has turned around again! It’s all about juggling medications. She has been so alert, focusing, & talking up a storm!

Other good news!! She started to hold her head up on her own & move it around!! YOU GO GIRL!!

Anyways, I’m rambling, but just very excited that things are looking up again.

We should also be moving into your new house this weekend!! HOW EXCITING!!

Take Care Everyone!!

3 Months 13 Days

Brianna is still at home & doing fairly well. Since we have been home, we have had 1 pediatrician visit, 2 visits to the surgeon that did her feeding tube surgery, & 2 visits to the lab for blood work to make sure her Phenobarbital level is where we want it to be.

She has had a pretty rough week this week. Her seizures started escalating last Tues. I didn't worry about it too much because we were going to have a level check done on Wed. Sure enough her level had dropped. So we increased the meds. By Sunday night, her seizures had increase even more...having 1 every 5-10 min. After an hour & a half of this, I called the 24-hour line to my ped's office. Talked with another one of the doctors, & we decided to increase the meds again. I also had to turn up her oxygen from a 1/4 liter to a 1/2 a liter.

The next 4 days, she slept most of the time, was maybe up 2 hours total the last 2 days. Last night she finally had some awake time (of course now her days & nights are mixed up). Because of her sleeping so much she really hasn't handled her secretions well at all...so last night I got out the stethoscope & listened to her lungs (yup learned how to do that too!)

She does have some fluid in her lungs. Poor thing. So I have been doing CPT (chest therapy) with her to help open up her lungs. She coughed out a lot of thick yucky stuff last night...so I'm hoping that what I'm doing is working. Going to wait it out through the weekend & see how she does. She is already doing better today than yesterday.

We have started seeing the Infant Developmental people as of this week. We will be meeting every Monday to work on her developmental skills including feeding (my #1 priority).

As I said, this week was hard, but we managed to get by without taking her back to the hospital. I thought I was really going to break down (did a little)...the fear of taking her back was just too much for me.

In other news...

The house that we are building is almost done! The foreman said within a week & a half. HOW EXCITING! Our first home!

Also...I did a PartyLite fundraiser (with the help of a friend) while we were in Seattle. Sent out packets to 80+ hostesses of mine requesting their help in keeping my business going & also giving them the opportunity to see the new line. Total profit on that was $1200!! Which I thought was great considering only 4 people participated.

Anyways, I will try to post messages more frequently. But always keep in mind...if you don't hear from me...then things must be doing good, because I don't have time to post a message!!

12 Weeks 1 Day - Going Home to Alaska

Well everyone....we made it home! We took a commercial flight out of Seattle last night & arrived at 10 pm Easter Sunday. My wish was to be home for Easter...well I didn't get to celebrate the holiday at home...but I was for sure home before the day was over!

Brianna did a complete turn around the middle of last week & is doing great. She is still having some seizures but they are much more controlled now then they were when we left for Seattle.

There were a few road blocks on our way home that I would like to share with you...make you laugh a bit!

We were in first class & so far I was able to handle things on my own. We are in the air & it's time to feed her & give her medications. Well...some of the medications are tablet form & must be crushed & another is liquid. Since she is still fed through a tube in her stomach this can be a little tedious. I thought putting them down together & not letting them dissolve a bit first would be ok. Luck would have it...they got stuck in the tube. I tried to plunge them down, but Brianna reacted & out came the meds...all over her. The flight attendant kept asking me prior to this if I was ok & if I needed any help...well...now I did FOR SURE! We had to ask the gentleman beside me to get out of his seat & stand while the attendant helped me. Here he is...in first class for a relaxing ride...NOT! I felt so bad...but he was ok with it & knew that she was more important then his comfort. So we got all of that under control & went on our marry way.

The reunion with Dad was great...since Brianna still requires oxygen, he was able to come onto the plane when we landed to switch out the tanks...the smile on his face was priceless, it was a great moment.

On to the next story!

So I'm in baggage waiting for Kevin to come with the truck...and all of a sudden her oxygen tank fell over & the piece that the tube fits on breaks! OMG Now what?!?! That was a stressful moment. We were able to get the tube to fit over the nut as long as I held it tight. So that's what I did all the way home. Talk about STRESS!

Next story ~

Coming home was stressful too. She needed to be fed again, we were all tired, she needed to be suctioned (hadn't cleared her secretions in 9 hours so she was desating quite a bit), and I hadn't pumped in 9 hours! Of course most of this I had to take care of because Kevin didn't know where I had packed everything. More STRESS! Calm Jamie, Breathe!!!

Next Story ~

We finally are getting to bed, Kevin has to get up in 2 hours, so he is quite tired (as am I). I get Brianna in her bassinette & start her feed....luck would have it again! The tube came away from the syringe & milk went all over her & the bed. ARGGGG KEVIN help!!!!

Finally got her situated again & we were able to go to bed. Talk about a welcome home party! YIKES! Once in bed, stress left & we went right to sleep.

Anyways...hope you all enjoy my stories!

Thank you to all for your continued prayers...though the journey is far from over I hope that we are at least away from in-patient visits!

Day 77

I did go out yesterday...took the bus to Northgate, went to a PartyLite regional & saw the new spring line! Also went & got my hair permed...something that I've wanted to do since before I found out I was pregnant.

I wanted to get a manicure & pedicure...but they are booked until Wednesday. I scheduled the appt even though it will be at night...not to keen on traveling at night...but I figure the bus should be safe.

Now about Brianna:
She is doing better but not great. She is no longer on the nasal CPAP. They took her off of the 3rd medication they had her on & she is starting to have awake times (kind of)...but her seizures are back. She also has to lay on her stomach all of the time because her secretions get too bad & she desats. Poor thing...she just looks so helpless. Her knees are starting to get a little sore too. :(

I finally got to hold her for the first time in a couple of days yesterday. She seemed to tolerate it fairly well. I sure missed being able to hold her & giving her whatever comfort that I could.

At this point I think the doctors aren't sure what to do about her seizures. We just have to keep playing with her medications, which is very time consuming. I haven't given up hope...just catch myself wondering what life is going to be like.

In other news...Kevin is home working with my dad today in putting in extra cable, phone, & network cables in our house that we are building. The house is coming right along. Never know...maybe I'll be in Seattle long enough so that when I go home...I'll be going to our new home. Gosh...I hope not...that would be a lot of packing for Kevin to do by himself (especially all the PartyLite stuff that's in my office!)

Well...I'm going to get some lunch. 'Talk' with you all again soon.

Day 75

Things were looking really good yesterday...now they aren't. I am so tired of this emotional roller coaster it's about to drive me nuts. Brianna has been put back on a machine that is like a ventilator. It's called a nasal CPAP (constant positive air pressure). Because of all the medication that she is on, it has made it very difficult for her to breathe on her own. This was the step to be taken before putting her back on the ventilator. On Wed they had to add another medication to her list because she started showing signs of seizures again. This has completely 'knocked' her out. She hasn't been awake since 6:00 Wed night. This was my wake up call this morning...I am completely devasted. We were on track to be coming home Monday or Tuesday...now I'm feeling we may never get home. I am trying to keep my chin up & be positive that she will pull through this just like she has all the other times...but it is really wearing on me. I have really begun to think about her quality of life. How long do we continue to help her? Are we really helping her or making her worse? So many things to think about. Nobody deserves to live the life that may be in store for her, but how do you, the parents come to that decision.

Since they have put her on the CPAP, she has started to turn back around. Let's hope that it continues. I will send another update today or tomorrow.

Day 69

I only have a minute as I haven't showered yet & I'm starved!

Brianna is still doing very good. I haven't sent out any updates
recently because there hasn't been anything to tell about. I caught
her awake this morning & she was up for 3 hours. It was beautiful.
She talked away & looked at me the whole time. I've been waiting for
that to happen again for days. Brought tears to my eyes.

Gave her a full bath last night to wake her up a bit. Then massaged her & did range of motion. She really loosened up & enjoyed it. I think massage is a good thing for her. In fact I'm going to get trained on how to do it the right way on Monday by the physical therapist. She has started to hold her head up a little bit too. Way to go girl! She is still having some problems maintaining her secretions, but she is starting to master coughing so hopefully that will help.

I bought a baby Bjorn front carrier yesterday at Babies R Us. Put her in it last night while I was cross stitching (yup took that up to...switch between knitting & cross stitching!) It was great. She was sleeping the whole time, but it allowed her legs to be spread apart a bit & kept her arms out too. She seemed to be very comfortable & so was Mom. My arms didn't go to sleep from holding her & I could do something else while still keeping her close to me. It was great!

I am holding up fairly well, just staying positive & hope that we will be back home soon. Well...tummy is growling & hair is feeling pretty gross! So I will email again later. Feel free to email me anytime...I look forward to getting emails from
everyone. Brightens up my day & makes me feel a little closer to home.

Day 65

Brianna was taken off of the respirator today. She is doing GREAT! She is having a hard time dealing with her secretions & has to be suctioned quite frequently. We are hoping that this will pass & it's just due to having the tube in her throat & the swelling. So she may just be a little reluctant to swallow. (Keeping our fingers & toes crossed.)

We spoke with the attending neurologist today & so far everybody is very pleased with her progress. They have many tests out & one of them has already come back (negative!) If all goes well, our stay here will only be a couple more weeks.

That's all of the news for today. Going to get some dinner now.

Day 64

No diagnosis as of yet. They have many tests out but take a while to come back. She is on a really high dose of Phenobarbital. The normal level is 20-40, hers is at 100. As a result they had to put her on a respirator & they are hoping to get her off of it tomorrow. The first time they tried to take her off, she didn't handle it very well, so hopefully this time it will be better. They are going to do a skin & muscle biopsy to determine a specific metabolic disease. They are also looking into doing another spinal tap for another type of disease. This will probably not take place until sometime next week.

Her seizures are currently under control & the neurologists are very pleased about that. The first few days she was pretty doped up, but the last couple of days she has had some alert times & the nursing staff seems to be very impressed with her interaction.

The goal is to keep her seizures under control by finding her maintenance level. Once they feel they have enough tests in process & she is stable, she should be able to come home. Some of the tests that they want to run take 8-12 weeks to come back, so it will not keep her here.

I will say however, that we definitely made the right move coming here. They are much more proactive instead of reactive. Even though we don't have any answers (and we may never), at least they are testing for more rare diseases & not just settling. This is the first time her seizures have been completely under control, that alone is an accomplishment.

Kevin is planning to fly back Wednesday afternoon. I am staying here with Brianna for a while to hopefully give them more time to get some answers.

Day 61

Finally getting on to a computer. I know that Kevin sent out an email this morning, but it didn't get to 'everyone'!

Everyone arrived in Seattle ok. Brianna & I came down on the private jet, but Kevin had to catch a commercial flight because there wasn't enough room on the plane for all of us.

Brianna is in VERY good hands. I am very impressed with the doctors & nurses. They seem to be proactive rather than reactive. Within an hour of arriving at the hospital, I had already spoken with about 8 people regarding her care. Most importantly the chief neurologist. He was not impressed with her seizure control & order more medication immediately. They kept pumping the medication until the seizures were stopped. And I mean PUMPED! The poor thing is still so drugged she hasn't really even been awake since we got here. But sleep is good, she really needed to give her brain a rest.

Because of the high dosages of medication, she was unable to exchange oxygen & carbon dioxide effectively, so they have intubated her (tube down her throat to breath for her). They have started to wean her off of this slowly, but currently is still on it. She is retaining a little bit of fluid, but that is one of the side effects of the Phenobarbital, especially at the level she is currently at.

They are running more metabolic tests to try & find a diagnosis. They have also suggested that Kevin & I speak with a geneticist (once some of this is figured out), to determine what the chances of this happening with future children may be. Keep in mind, at this point we don't know if it is a genetic issue or not. This would be a WAYS down the road.

They have started giving her breast milk again today & will slowly increase it if she tolerates it. Oh...some good news (I think). It appears that her brain is smaller all around instead of portions of it being smaller.

Well I think I am starting to ramble a bit! Kevin & I are doing well & are staying in a room here in the hospital, until the Kids Village is available.