Christmas, Fevers, Infections, and Labs

I want to start this post with a few(ok, several) pictures of Christmas in our home this past week.  We were so blessed to have all three of our children together for another year.  Having Ashley home this Christmas has once again solidified in our hearts that we are making the best decisions for her that we possibly can at this time.  I truly believe had we jumped back into transplant early on as we once thought we would that she would not have been here with us celebrating yet another holiday.  This years holiday pictures are bitter sweet.  I think I use that phrase a lot when describing life with Ash, but its the best I can come up with to describe how very sweet it is to have her in our lives and yet how very bitter it is that her little body is so broken.  Its becoming more and more evident in her photos that her skin has turned yellow, she is swollen, and her the whites of her eyes are now gone.

On Christmas Eve we took Ash for a drive to see Christmas lights.  We've done this several nights the last few weeks.  She is happiest when riding in the car and as we drive through the light display she always signs "more, more, please" as we approach the end.  Of course we take another turn right back through it again.  Some nights as many as three or four times.  She was feeling pretty good on Christmas Eve.

Since Ash was having a good evening we decided to come back to the house and open gifts rather than waiting for Christmas morning.  Our big kids were happy to oblige and had no complaints about our little plan.  We don't usually open gifts on Christmas Eve but we decided to go with it since we didn't know how she would be feeling Christmas morning.  I'm so glad we spent the evening doing this.  

 Ash was very happy to finally be opening the gifts she'd been trying to get into for days.  She smiled a lot and enjoyed the whole process.  We stayed up late into the night playing with her toys and I don't think she actually settled down for bed  until after 1am.  Sweet memories.

Blake and Allie were so very thankful for their gifts.  They never ask for much and so Christmas is always a little bit of a struggle trying to figure out how to bless them in the best way.  The smile on his face and the

tears in her eyes were enough to let me know we had done our job well.

By Christmas morning things with Ash began to take a little turn.  She wasn't feeling very well and did not want anything to do with Christmas stockings or gifts for a while.

The look on her face pretty much sums up how awful she was feeling that morning.  Not a lot of joy or happiness to be found.

Ash just felt crummy for the first few hours.  Eventually she did begin to perk up and enjoy her self some.  

Looking through her stocking with Daddy.

Finally tearing into her packages.  Slowly, sweetly, with little tiny, "yeahs" as the contents were revealed.  Precious holiday memories I was making mental notes of with our tiny girl.

Surrounded by race tracks and cars she was a happy girl.  Despite her fevers and feeling crummy she did her best to play all afternoon.  

By evening we were all in for a magical surprise when snowflakes began to fall in TEXAS!  It was so beautiful.  Very fun and a perfect way to end my favorite holiday.

This is one of my favorite photos of Christmas 2012.  Our sweet girl, snowflakes still in her hair, warming up by the fire.  Something about the image makes me smile inside my heart.  Yellowed skin, swollen face, broken body...I still find her beauty breathtaking.


By late evening Ash began having fevers.  She was feeling crummy and wanted to be in her bed.  Her fevers are concerning since she is on and has been on some very strong IV antibiotics.  She continues to battle two very ugly bacteria in her central line.  One of them is a gram negative and the other is a gram positive bug.  The fever lasted all through the night and for the entire day yesterday.  She spent most of yesterday sleeping through them.  They did break for a little while through the night, but by this morning they had spiked again.  Along with the line infections and the need for antibiotics her liver numbers have gotten significantly worse.  The lives is struggling to process the drugs needed to clear the bacteria from her line.  We have watched what little progress she was making in her liver disease over the last two weeks slip away as we read over her latest set of labs.  My heart hurts over this, but I am hopeful that once she is off the antibiotics she will once again show us some improvement.  Any level of improvement is cause for a celebration at this point.

In light of her illness, her struggling liver, line infections, and fevers I feel so very blessed that she remained stable enough to spend Christmas at home.  We have a very good local team of professionals who do everything they can to keep Ashley at home where she is happiest and most comfortable.  I can't thank them enough for coming on board with us to give her the best quality of life that she can possibly have.

I would have to say it was a very Merry Christmas and we are so blessed.  I thank you for your prayers for our little one, for our family, and for clear direction as continue to navigate our way through this very messy time in Ashley's health.  Your presence in this place along beside us is felt every single day.  Thank you for loving us.

Merry Christmas

From our home to yours...we wish you a very Merry Christmas.  May you feel the love of your Saviour surrounding you and yours as you lay your heads down this night.  Amazing love...God becomes man so that we might KNOW HIM.  A greater gift will never be given that the gift of Jesus. We love you all so very much and as we celebrate another holiday with our sweet girl we realize your love and your faithful prayers have given to us this very gift. 

Sweet and Sour Moments

This holiday season has been filled with several ups and downs involving Ash's health.  Some sweet and sour moments.

This morning around 2am the phone rang and once again we were alerted to positive blood cultures from Ashley Kate's line.  Not just one bug but at least two.  We have a gram positive and a gram negative growing from both lumens.  Definitely one of the more sour moments.  Still though in the big picture of what the holidays mean to us and how very important it is for us to all  be together I can't help but be so incredibly grateful that we are celebrating Christmas at home.  She is sick, but she's table enough to be home.

Ash had two really, really good days this week in comparison to how she had been feeling over the last couple of months.  We enjoyed so much seeing her eyes sparkle and her smile shine.  We listened to hours of laughter and hung on every joyful sound she made.  Then yesterday morning she began to show signs and symptoms that told us something was wrong.  The changes come on so quickly!  Its hard to understand just how fast these little ones go from being fine to being sick.  Really sick.  I wouldn't believe it if I didn't live it.

We got orders to begin some really strong IV antibiotics this afternoon.  We don't have an id on what bugs she has or any sensitivities, but we began hitting them hard with some broad spectrum drugs.  This evening she seems to be feeling better than she did yesterday.  She's perked up some and eve asked to go for a drive tonight.  Her daddy took her to see the Christmas lights.  Again:)

She's very much looking forward to opening her Christmas gifts.  She's so dramatic when we tell her "no, its not Christmas yet".  She makes a little fake crying sound and scrunches up her nose acting like she's sad.  It cracks us up the way she is behaving about it all!  She asked Blake to let her open some tonight and he told her they would have to ask first.  She didn't like that answer and the whole act began again.  Fake cries, scrunched up nose, and signs telling us she was crying and sad.

So even though we are running meds round the clock and battling yet another line infection we are able to enjoy some sweet moments.  Our holiday season has been blessed so very much and we are very grateful for the sweet times we are being given.

Its Christmas Time Again

I wait for this time to come all year long and I can't help but be excited this morning.  The house is quiet.  My girls are still sleeping.  Blake had an early ball practice this morning and Dave left at 5:30 for the office, but by this evening everyone will be on break and all things Christmas will be a go.

We chose years ago not to get involved in all the hustle and bustle of Christmas time.  We don't do parties, social gatherings, and the running ourselves ragged during the holidays.  What we choose to enjoy and focus on instead looks like this... family.  It is the most blessed, most peaceful, most wonderful time spent doing nothing except concentrating on making memories with our kids.  The traditions have changed a little over the years as our big kids became young adults instead of wide eyed babies, but many of them still linger.  We work holiday puzzles, bake cookies, take naps, play board games, cook dinner together,visit, laugh, and slow life down. By this time of year we all need life to slow down!  Our everyday is so packed full that its hard to find moments to breathe between all the running and activity.

Last night I snuggled with and rocked our little gherkin by the tree.  The reflection of the lights in her eyes was a beautiful memory.  I sang Jingle Bells and she giggled at all her favorite parts.  As I spent time slowing down with my sweet girl I found my heart to be so very full in those moments.  There is something about the house during this time of year that brings my focus onto this family and all else in our lives just fade away.  I love that.  I think this may be the very reason I love the holidays so much.

I'm so looking forward to spending these upcoming days with my favorite people. There is nothing I can imagine I would rather be doing than listening to the conversations, the laughter, and the stories that spill out of the mouths and hearts of my teenagers.  Dave and I are SO enjoying these years with our kids.  We have been blessed with some amazing young people and a sweet, sweet 7 year old and life around this house is fun.

Life isn't perfect and I don't ever want to pretend that it is.  There are struggles and heartaches and lots of unknowns, but this week we will put all of that behind us.  Even if just for a little while.  I pray your holidays are filled with sweet moments, precious memories, joy, and laughter.  My gifts won't come wrapped and sit underneath our tree.  My gifts are more valuable than anything that can be bought.  They are a 6'1 handsome young man with a smile that melts his momma's heart, a 14 year old beauty with eyes that shine when she laughs who has a sense of humor that makes us laugh until our sides ache, and a  tiny gherkin whose laughter fills the rooms of our home and whose eyes  sparkle with mischief.  I'm just so excited that Christmas time is here again.

Merry Christmas my precious friends.  May you feel the love of the Father surround you and may peace fill your homes and your hearts.

An early Christmas gift

Sweet Ash,

Christmas is only one week away and you are here...you are home...again.  My heart smiles at the thought of spending another Christmas with you my sweet, sweet girl.

We have had some harder days as of late and I wondered if we would be given another Christmas together this year.  Some days I wonder how many more we will spend together, but then I try so very hard not to get ahead of today.  So I want to tell you about today.

You smiled a lot today.  Your giggle was heard from room to room and Daddy and I talked about how very glad we were to hear it back again.  I don't know what was different about today for you, but you showed us that you, our sweet girl, is still capable of having good, good days.  My heart needed to know that today. Its not that life has changed so very much, its just that life is changing quickly for you and we have witnessed those changes and fought back the tears.  To be honest...fought back the fear too.

I listened to you play today.  From outside the door of your play room I peeked in to watch you just be you.  My heart could hardly contain the emotion that welled up inside of me.  Your beauty.  Your sweet, sweet spirit.  Your twinkle.  Your smile.  Your long brown hair that fell across your face.  I drank it all in.  Snapping a mental photograph as the lights of your Christmas tree glowed behind you.  I watched you play with your insect puzzle and giggled as I wondered how I was blessed with a tiny princess who loves all things not "princessy".  I watched you dig through your pile of bugs until you found the perfect one.  The one you love the most.  The fly...and I couldn't help but smile...because I don't get why you love that nasty thing...but I love that you do.  I listened as you raced your cars down the track and watched you dump them all out on the rug.  I scanned your beautiful play room and searched for something girly...and giggled again when the best I came up with was a lady bug.  Why is it that you love everything I never thought you would?  and why is it that you don't love baby dolls, or doll houses, or purses?

  Oh Ash,  I couldn't love you more if I tried!

Tonight I listened to you laugh and giggle with Daddy as he tucked you into your bed.  You laughed so hard and so loud I had to come and peek around the corner to see why.  Nothing special was happening...except thats what made it so very special.  You and Daddy were laughing just because he has missed hearing it so very much and tonight you felt like doing it.  So he joined you...and you giggled...and you laughed...and lay there together...he so big in your tiny bed...sitting by your side... laughing until your belly must have ached.  Oh...my...heart!  Such joy!

At 2:30 this morning I woke to your laughter.  I walked down the hall to see your smile...ear to ear...shining through the glow of your snowflake lights.  I told you it was time to sleep, you needed your rest, you were supposed to go night night.  Your response?  You asked for a book.  Not just any book...the book...our book.  How could I say no?  and so I sat and recited page by page from memory as you turned them.  The smile in your eyes was so bright...In the great green room, there was a telephone, and a red balloon...and a picture of a cow jumping over the moon...I remembered reading those words to you as lay so tiny, so new, in your little "incubator" in the NICU.  I couldn't help but picture you there as I stared at your long legs and precious hands tonight.  Hands that I had no idea would one day speak for you and legs that I would have never imagined wouldn't carry you through your life.  Tears rolled down my cheeks as the thoughts came to me. That story has served us well.  Through the years, many hospitals stays, and many nights.  Tonight we shared it once again, just as we will tomorrow I'm sure.  Oh how I love Goodnight Moon because of how much I love you.

Sweet Ash, you had a good day.  In between your long naps you smiled today and you laughed and you played.  As I sit here in the early morning hours of what has now become a new day I know that it was the gift I needed this Christmas.  Merry Christmas to you baby gherkin and thank you for giving me the memories we made together this day.  Love you sweet, sweet girl,  Mom.

Ashley Update

We've been treating Ash for a line infection since last Thursday.  The colonized staph that resides in her central line flared up and she began vomiting and spiking fevers Thursday morning.  She woke at 6 that morning soaked by perspiration so much so that her line dressing had come loose and she was hollering to let me know there was a problem.  Her cultures were drawn that morning and grew out rather quickly.

Ashley has had some sort of cold/ear ache stuff going on since the middle of August.  She has a cough and some drainage and just feels not so good.  It takes her forever to shake any type of cold or virus.  Her little immune system isn't strong enough to get rid of it so she's been battling it for almost 4 months now.

I dreaded her lab draw this week knowing by her appearance that things had not improved.  The color of her skin and the whites of her eyes told me things were going to look much worse than the previous week.  Sure enough her bilirubin jumped by 5 points in just over a  weeks time.  My heart sank when my suspicions were confirmed.  I keep hoping for a miracle but have yet to see one take place.  There isn't anything that can be done to reverse the damage the TPN is doing anymore.  We continue to use Omegaven as her lipid source, but it is no longer holding her bili at a safe range.  I wish there was more we could do to save her liver from declining.

I think the opening in her transplant scar has finally begun to heal.  When I changed her dressing last night it looked really good.  We switched out her g tube and increased the length by half a centimeter.  It seems to have helped some of the discomfort the was experiencing.

We are living life as normally as possible.  Still allowing Ash to go out on the days she feels good enough too.  She loves going to basketball games or on car rides.  Dave and I took her out with us one day last week and allowed her to do a little window shopping.  She was so funny as she chose this or that and signed how much she loved it.  We took pictures on his phone and told her we would show them to grandma and she might get them for Christmas.  I never know exactly how much Ash is understanding when I talk to her, but we all just act like she knows what we are saying.  The next evening she proved to me once again that she is all there and that she knows whats going on around her.  When her grandparents came over for dinner she immediately signed to them that she was ready to leave and go shopping for the toys she picked out.  It was so funny!

Overall I'm thankful that she is feeling as well as she is at this time.  Things have changed even more since my last update on her medical status, but she continues to smile and giggle and do her best to be happy.  We are so blessed and so grateful to have her with us.  We've had so many strangers approach us lately to share a kind word, make a comment, or reach out to touch Ash.  Its been a little odd to watch the impact she is having on people these days.  Not in a bad way, just a different way.  I think the color of her skin gives them even more information about her condition than her chair or her IV or the fact that she is signing to us.  Something about seeing her causes them to pause in their days and take notice of her.  Yesterday two men were having lunch across from us.  As we got up to leave one of them spoke to ask me her age.  He then smiled and told me, "You all are very blessed."  I answered to him that we were very, very thankful to have her and he wished me a Merry Christmas.  I walked away silently wondering what about her made him take notice and what impact had she had on him in those brief moments to make him want to speak to us?   I'll never really know, but his words were kind and very appreciated.  I was comforted by his words because I know that God is still using her, and I know that as long as He still has people for her to reach that she will be with us.  My heart smiled at that thought.

 We love her so deeply and the thought of her not being with us someday is crippling.  I'm working so hard at staying focused on her today's and not worrying about her tomorrows.  Every once in a while Dave and I may have a brief conversation about where this is all heading, but its not often and its not easy.  We never discuss it with the older children.  They love her so very much I can't bare to break their hearts.  Not now.  I pray not ever.

A few of...

My favorite things during this holiday season:)

The Christmas Parade.  Especially when my favorite PTHS Cheerleader is in it.

The sounds of Third Day's Christmas Offerings CD playing in the house.

Our family Christmas Card.  A new picture of all three kids together every single year.  Smile!

The smell of a Yankee Christmas Cookie candle burning.

A comfy seat next to the tree.

Tiny evergreens wrapped in burlap with little white lights glowing.

Our Willow Tree Nativity on the book shelves.

The scattering of a holiday puzzle across the table in the family room.

A basket of fresh evergreens and cranberries on the kitchen counter.  It just feels like Christmas every time I go in there.

Jingle bells and pine cones.

Holiday wreaths and garlands hung on the front doors welcoming all who enter.

Ashley Kate's lollipop tree and the soft glow the lights from it cast in her bedroom each night.

Elf.  I play that movie at least once a day.  Seriously, I do.

The twinkle in her eyes.

A perfectly set table with holiday dishes.

The glow of a candle.

The peace that envelops me  each time I walk back in to what I know is our home.  Something about Christmas brings that feeling back each and every year.

Coordinated packages wrapped in brown paper and tied with up with a strand of jute and an occasional red satin bow.  Simplicity at its best.

This precious little man who remembers my sweet Ashley year after year and loves on her each time he sees her.  Be it from a distance with a tiny little smile and a wave, or a brush of his gloved hand across her cheek as he approaches her chair.  His gentle kindness towards her has made my holidays sweet the last few years. I wonder if he even knows?

Cranberries scattered throughout the Christmas tree.  The pop of color they add makes me smile.

Snowflakes hanging down from the playroom ceiling.  Its very festive and happy in that room.

Snuggling on the cool December mornings with my girl.  We don't get a lot of those in Texas but the few we have are being so enjoyed.

A stack of freshly laundered, warm, soft, cozy blankets next to the fire place.  Love it when I walk into the room and everyone is cuddled up under one and the chair is empty.  Puts a smile on my face.  Ashley asks for a blanket off this chair every single morning:)

Baking Christmas cookies for my boy.  Even at 17 he gets so excited!  Nobody loves a warm cookie more than Blake:)

Christmas vacation.  I LOVE having my teenagers home for days and days in a row.  Possibly my very favorite thing about this time of year.  Time spent with my kids doing the nothing special that makes it so very special.

I could go on and on and on but I'll close with this one:

The gift of Jesus and the time to slow down and concentrate on what a gift He truly gives to each and everyone of us.  Christmas is the opportunity for us to focus on eternity and how precious it will be once we are all gathered together again forever and ever.  Those whom we have loved and have gone before us and those whom we have loved enough to share Him with.  The only thing we are taking with us from this world are people.  People matter and Jesus makes a difference in their lives.  Love on the ones who surround you this Christmas and reach out to some who just cross your path.  You will never regret a moment of the time you invest and perhaps we will make an eternal difference in someone's life.

Merry Christmas to you each one of you.  I hope your list of favorites grows by the day.  I know mine does.

She KNOWS they Love her..

 Because they SHOW her that they love her.

My favorite moments are those moments in which I stumble across an interaction between one of my big kids with our sweet Ash.  I don't have words that could even describe how blessed my heart is in these moments.  Ashley knows with every part of her how very much she is loved. 

Blake and Allison do a beautiful job of loving Ash.  They show me every single day what is to be the hands and feet of Jesus.  I stand back in the shadows and listen to the words they share, watch the help they offer, and make mental notes of the time they spend.  I am so blessed in these moments.  So blessed.

I could watch the interactions and never grow weary.  I try to be silent as I snap a picture every now and then and most times they never even know I was there.  I think thats what I love about it the most.  Its a choice they make to spend their time with her.  I love to over hear as they ask her how her day was or when they begin to share where they have been and what they did that day with her.  She loves them so much, and although those three little words have never been spoken from her mouth to either of them they realize that she loves them.  Its in her eyes.  Its in her smile.  Its on her face.  Words aren't necessary.  You can just feel that she loves you when you are with her. 

My favorite gift this holiday season is time.  Once its spent it can never be given back, and the one you spend it with may never forget that it was given.  My prayer this month is to be present in each moment and to give my time to those whom God gave to me. 

I hope your day is blessed.

Spirit

Although her body may be broken, her SPIRIT is not.  

As we walked away Santa reached out and touched my arm then whispered to me, "She just made my whole day.  Thank you."

Mr. Kringle, you have NO idea how you just made mine.  

Hope your week is filled with holiday spirit.  God bless.  

Medically Speaking

This post is long overdue.  I've been delaying it.  Its just not been in me to share the updates and the details of everything that has been happening in Ash's little body.  I guess the best thing to do is jump right into it, get it posted, and then try and not dwell on it any longer.  I know so many of you have been waiting to hear how she is and if she's getting well.  Its for you that I'm writing this post.

Ash is not getting better.  There... I said it.

I watch her feel a little less herself every week.  I see the color of her eyes and the glow of her yellowed skin and I know without even seeing the lab sheet that she is not better.  Her bilirubin is now as high as it was when we started her on Omegaven two years ago this month.  Brutally honest....its very frightening.

Along with her climbing bili one of the side effects is that she feels the need to claw at her skin to try and relieve the itching it causes.  As a result of this constant clawing and scratching she has opened up a portion of her transplant incision.  She has about a 2 inch wound that is draining a foul smelling drainage causing us to pack and dress the wound daily.  She has several other areas on her body that she is scratching raw too.

Another side effect of her liver struggle is the need to sleep.  She requires many, many more hours of sleep than she did just a couple of months ago.  I think Dave said it best last night when he said to me, "She's just getting tired.  Her little body is tired."  I held back the tears as I sat in the dark riding next to him in the car.  He's right.  She is tired.

As far as her liver enzymes are concerned they are showing some improvement.  I'm thankful for that.  The enzyme levels in her blood are checked each week to show us how well the liver is actually functioning and if its doing its job or not.  Just a couple markers that are used to give us an overall picture.  So  I look at those numbers each week and am happy to say that they are dropping closer to normal ranges.  The transplant surgeon we saw in Omaha told us he expected her bili to stabilize and return to her normal baseline, but he couldn't say why he thought it would or when it would happen.

An ultrasound was done while we were in Omaha to help us determine whether or not there was more disease progression than when the last one was done two years ago.  As far as we were told it remained unchanged which did not fit with what we all had expected to hear based on her lab work.  It is a blessing to not see marked changes in it, but still gave us no insight.

Ashley Kate's skin has a toxic smell coming through it.  We've seen this happen to her before transplant when she was a tiny baby.  Its just something about the liver being sickly that has a very distinct odor.  No matter how much I bathe her or lotion her skin I can't get rid of the smell.  It hurts my heart so deeply.  I've never been able to fix much of anything about Ashley's broken body, but I've always done my very best to make sure she stays clean, smells good, and feels pretty.  Those are little things I do have some control over and to think that someone may come close to her and think that she smells bad is very, very hard on my heart.  I'm trying so hard to fix this, but I know I'm failing.

Ashley's calcium levels in her blood have been critically high for close to 6 months now.  Basically calcium is being "leeched" out of her bones and teeth and is registering higher than normal levels in her blood.  The answer we have been given is that its part of extended TPN dependence and disease progression.  Her teeth are very, very weak and they are all loose.  Including her permanent ones.  It breaks my heart to see this each time I brush her teeth.  I fear that eventually she will lose them all.  She bleeds quite a bit from them and over the Thanksgiving holiday we removed several, very large blood clots from her mouth due to her teeth that are pulling loose from the gums.  Blood is always scary.  No matter how many times you witness this happening the large amounts of loss are frightening.  We had watched her lose blood for several days through her g tube before it was determined that it was indeed coming from her mouth.  There were a few days when we feared she was bleeding inside her stomach.  I guess we were relieved to see that it was coming from her teeth.

Along with the calcium issue it is assumed that she is at high risk for bone fractures.  It has been discussed both in Omaha and in Shreveport that on her next hospital admission no matter what it may be for that a full body bone scan will be scheduled.

She has some ugly skin issues around her g tube and it leaks and bleeds daily.  It is so very, very painful for her when I clean and dress the area.  I am working to get scripts for a larger size to see if changing sizes might help with the issues we are having with it.  I hope to make some progress in this area this upcoming week.

Her eyes, her nose, and her bottom are leaking bili.  She appears to be crying sometimes when she's not.  Its just bili leaking from her sweet eyes.  Her urine is a very, very bright color due to the bili that is being spilled out along with it.

When I list it all out I know it sounds pretty ugly.  Daily life and cares are becoming more difficult.  Still though she is not in pain or showing us much discomfort from the liver becoming ill.  She does still smile and laugh and play every day, although it is not a constant in our lives as it has been the last 18 months or so.  We are noticing that she is not the same little girl she was 8 weeks  ago.  She's struggling a little more now.

But...there is still a lot of spunk, and fire, and attitude in her!  I smile and laugh at something she does or signs every single day.  We are still determined to allow her to experience as much as she can and allow her to live as fully as is possible for her in this life.  We are focusing on spending the holidays together with her and our teenagers.  She is still happy although tired.  She loves for the Christmas lights to be glowing and for the carols to be playing.  She requests both each morning when she wakes.  As I tuck her into bed at night she signs "listen" and then snuggles underneath her quilts as the music fills the air in her room.  I haven't bought or wrapped a gift yet and I'm not so sure that I will this season.  We are all so focused on what this holiday truly means in our lives and in our home the rest just doesn't seem to matter that much anymore.  There are gifts in this life that can't be bought.  Laughter...peace...joy...contentment...family...time.  How do you buy anything that can even compare?  I just don't think you can.  Somewhere along this journey we are all on with Ashley Kate she taught us to be thankful for the things that money can't buy.  There is a magic in that itself.  Finding how to be content in the moment that we are being given.  Its the sweetest thing I've ever been given and to think that our tiny baby gherkin was placed in our lives to show us something so profound.

I won't dwell on these things I've shared much more in the journal.  I put them out there because I know of your concern, but I simply can't be sad right now.  I have so very much to celebrate and not a lot of time to in which to do it.  I will focus on the joy of our holiday season for the next few weeks unless any major changes occur in her medical status.  I thank you so very much for your love and your prayers.  I know how much you love our sweet Ashley and that blesses this  momma's heart more than you will ever know.