Ashley Kate is Doing Great

In comparison to what has been going on with our sweet girl the last 3 months I'm happy to say that Ashley Kate is doing great.

Taking all things into consideration, I mean she is still battling a staph epi line infection that won't clear, and her liver is still sickly, but overall she is doing so much better than she has been.

I held her on my lap last night and stared at her rosy cheeks and pink lips and smiled so wide because her coloring is returning to normal.  She had been so toxic and so yellowed from her high bili levels that I had almost forgotten what her beautiful complexion was supposed to look like. Her eyes are not yet white again, but they are so much brighter and I'm not afraid when I look into them anymore.  She is able to stay awake for longer periods of time and she feels so much better its unbelievable to me to see how much her liver function can effect her day to day.

What changed?

Her bilirubin had made a serious and concerning climb from a level of 1 up to 14.  It had gotten to the point that I dreaded her weekly labs and held my breath as I scanned over them because the rapid changes were so frightening.  This week her bili had come down 4.4 and although that is not a safe or healthy number it is SO much better than it had been just a few weeks ago.  In addition to the bili number her liver enzymes have dropped hundreds of points in the right direction.  Again they are not in the normal or safe range, but the changes have been drastic and encouraging.  We are starting to breath a little easier and our hope is beginning to return.

At the point in which her bili had climbed all the way to 14 and her liver enzymes registered in the 4 and 5 hundreds we decided we didn't have much to lose so we began treating Ash like we would if she were a patient in our own office presenting with liver struggle.  We began adding two supplements to her dose of Prograf daily and the changes in her liver function have been astonishing.  In the beginning we were nervous about stimulating her immune system too much, but there comes a point when nothing is working anymore and you have to do something different.  I am SO grateful that Dave is good at what he does.  SO thankful for the wisdom and education God has given him.  SO thankful that he is Ash's dad.

So this update is much different than the last two.  She no longer glows.  Her skin is not leaking anymore.  She doesn't smell toxic and she doesn't sleep the day away.  She is happy, smiley, giggly, ornery, and so full of life.

We are still concerned about her liver and its ability to continue functioning properly, but our main concern this week is trying to find an antibiotic that can penetrate through the slimy layer of bacteria that has colonized inside the wall of her central venous catheter.  We know its localized to the catheter and not systemic because she is not sick.  She shows us no sign of being septic. However there is always the possibility of it becoming more dangerous and so we need to find a way to clear it.  Our doctor is working with an infectious disease doctor and together they are trying to figure out something that may work.

I'm grateful every single day to wake up here in our home with her.  She is precious and amazing and we are so, so blessed.  We have an uphill battle ahead of us and I don't expect that it will ever get any easier, but for today I know that we are doing our very best for her and it seems to be working.  Its a good feeling to tuck her in each night and kiss those sweet cheeks knowing I'm doing everything I can to give her a childhood as free from pain and fear and struggle as I possibly can.  I love her so very much.

Thank you for asking about her.  Thank you for praying for her.  Thank you for still being here with us.  Its always a blessing to read encouraging words from those of you who love our sweet girl so much.

Just For Fun

So many of you have been asking if Allie was well enough to attend her first formal last Saturday and the answer is... YES.

It was such a fun night and a little stressful with two teenagers going to the same event, but we survived and they had a great time.  In the end all the long hours of planning, decorating, and clean up was worth it to see the smiles on their faces.  Dave and I loved every minute of it even though we were definitely feeling our age at the conclusion of Saturday evening and well into Sunday!

Here are just a few pics of our teenagers and their dates from Saturday.

This is Blake and Hayley.  She is... simply put...stunning and this beautiful every single day of the week.  She makes him happy and you can't ask for much more than that.  We like to laugh at them because they are both a little bit of a homebody and prefer to be in bed by 9 or 10 each night.  That includes most weekends too!  They make the cutest couple.

This was one of my favorite pictures of the whole night.  LOVE her shoes!  So fun!

My beautiful Allison and her date Lucas.  These two have so much fun together.  He makes Allie laugh...  a lot...and in her book it doesn't get much better than that.  Our Allie likes to have fun and finding someone who can keep up with her is a blessing.

This is another one of my favorite pictures of the night.  She's not even flexing those guns of hers and you can see the muscle!  She cracks me up.

                                                                                               

The theme of this years dance was Welcome To The Carnival...notice anything familiar?

So to those of you who prayed for our sweet girl to be well enough to attend I want to say thank you.  She had the time of her life!


I'll be posting an update on Ashley Kate sometime tonight.  See you then.

Praying for Emerson

I'm asking for all of you to come together once again and pray for my dear friend Erika and her sweet Emerson.  The details are many, they are confusing, painful, and really just too difficult to go into on my blog.  It is not my story to share, but I do know that my friend stood by last night and watched her little girl code.  She experienced what I had hoped NO one I knew would ever have to endure with their child.  It remains to this day the single most painful experience of my life, and it is the event that fuels my nightmares even 2 and 1/2 years later.

Sweet Emerson is very sick, very fragile, and very precious to our hearts.  Your prayers for my friend and her family would be very, very appreciated at this time.  Please take a few moments and bring them before His throne.  I know they will be forever grateful as will I.

Sick

Seriously, we are sick.  The whole house is or has been and is again.  In 20 years of married life and 17 of those twenty raising children we have never had this happen.

It started with Allie about two weeks before Christmas and it has made its way all the through the family and then back again to Allie and me!  We are on our second round of this nonsense!  I seriously would just like to breath normally again.  My head is about to explode!

My sweet Ash has stayed sick since August and has good days and bad days and then worse days.

Then this morning as if coughing, sneezing, and running fevers weren't enough Allie woke up yelling for me to come to her room.  I couldn't have imagined what I would find once I opened her door.  First of all the look of horror on her face was so alarming and then I got close enough to see why she had that look.  Her body, entire body, including her face is covered in a rash.  NOT EVEN KIDDING.  She looks awful!  Simply awful.  Tomorrow night is the football banquet...um...its a no go for her.  That dress and shoes will go unworn.  Then Saturday night is the Cheer leading formal.  Her first formal event of high school.  First time to have a real date who will be wearing a tux.  She's has been so excited about that.  We've had the most amazing dress for two months, and the shoes, seriously the coolest shoes, and jewelry...totally ready for this event.  Hair and make up and nail appointments have already been made.  I just keep telling her anything can happen in 6 whole days.  She could look normal by Saturday, right?  She is refusing to attend if there are ANY signs of what has happened to her left on her body.  I can't even believe this.  I just keep hoping she will wake up in the morning and look like herself again.  Dave thinks I'm crazy for thinking that, but there is no way this is going to last all week.  Right?  No way.  She's had a fever all day long, and things aren't looking good at this point.  But its only Sunday and the dance isn't until Saturday.

Oh yeah, and its finals week.  I know she won't be going to school tomorrow for sure and how many days after that is starting to make me panic.  I  guess they have to allow her to make up the exams.  At least I hope so .

I've been painting and building props for this formal for two weeks, and today I just kept on painting.  Trying to ignore thoughts of having to set up all day Friday for an event she may not even be able to attend.  My heart is so sad for her.  She's hardly come out of her room at all today.

She can't be anywhere near Ash.  She can't even touch anything that Ash would touch.  Taking care of Ash through this whole sickness has been difficult.  There have been days when I've drowned myself in hand sanitizer, gone through dozens of pairs of gloves and kept a mask on my face for so long that I've forgotten it was even there.  I'm trying to keep her from getting any sicker.  I don't think its working, but I'm trying.  Its been three days since I've slept because anytime I lay down I feel as though I'm drowing.  I can't swallow and I can't breathe out of my nose.  There is such a feeling of panic that comes over me when I lay down.

Anyway, I'm just trying to survive.  Surely this will all end at some point.

So I've been a little slow at putting up any posts lately.  Its really because I just don't feel well and didn't want to get on here and write about being sick every single day.  I figured I'd at least touch base and let you guys know that we are still here and trying to get things back to a status quo around here.

P.S.  Ash is still positive for line infection and we continue treating every single day with IV anitbiotics round the clock.  I've lost track of how many weeks its been now.

Just Because...

these are some of the coolest pictures I've seen in a long time...

and because he is one of the coolest guys I know...

 He really is amazing!

Love basketball...love him...and love being his mom.

A new year

Its a new year and I find myself struggling to write even one word here in this place that has become so very precious to me over the years.  I have thought day after day that I need to write something... anything...just a word or two at least, and yet I put it off until the day is done and then I find myself thinking the same thing the next day.  Tonight as the date on the bottom of the screen caught my eye I see that we are already 6 days into this new year and I have shared...nothing.

I can't assign a reason or even come up with an excuse as to why.  I want to write...to share...to open the windows of my heart and allow so much to come spilling out on to this page and yet...I don't.  I'm in a strange place.

So where do I even begin?

 There is so much I could say.

 Probably should say.

  I could begin with all thats been going on in our world.

 I could share that Allie's knee is out...again...and we are struggling with what to do to best help her get through these hard,hard days of being sidelined...again.

 I could share that Blake is having an amazing basketball season this year averaging about 15 pts. a game and just how fun it is to get to be his mom as I sit in the stands and watch him play the game that I loved coaching so very much.

 I could go into detail about just how sick my sweet Ashley Kate has been and currently is.  There is much going on in her tiny body and staying on top of it is wearing me out.  I know I should talk about this in detail mainly because I need for you all to know how best to pray for her at this time, but to be honest it is draining me just to think about writing it.  Some days it is just so overwhelming and heartbreaking.  Just know that she is sick.  Really sick right now and needs your prayers.  Her liver is sick.  She is battling a very stubborn line infection, and she has an awful upper respiratory infection that is proving to be very difficult on her.  The needed antibiotics are very, very hard on her already struggling liver and its function.

I think what I will finally share here is this...We want to teach Ashley Kate how to stand.

Dave and I have decided to focus on this one thing this year to try and make her life and ours a little easier.  Our hope for Ash this year is that we will be able to teach her how to stand.  On her own little feet.

 Not walk.

 Not run.

 Not hop or jump or skip.

 Just stand.

 If we could master that one goal I believe the year of 2013 would be life changing.  For her and for us.  I don't think this is out of reach for her.  I don't think it will be easy for her either.  I know we face a huge challenge attempting it, but we need this for her.  Currently she is non weight bearing on her right foot.  Its been 2 and 1/2 years since her heel injury and she has never been able to bear weight on the foot since the incident.  I don't know if it is merely phsycological or actually painful for her, but she will not stand on the heel at all.  She keeps her knee bent in order not to have to put her foot flat on the floor.

So, God willing, this year we hope to teach our girl how to stand.  I think we have always just figured she could learn to walk and yet never even stopped to think  that she might need to know how to stand.  I'm not sure how this step was skipped over in all the years of therapy and such, but the other night Dave decided we might need to back up and start with her gaining the ability to stand on her two little feet before we push her to walk with them.  I sat there and thought to myself, "Wow, hes right.  How did we miss this?"   Once our sweet girl is feeling up to a little hard work we are going to get started.  Maybe, just maybe this could be the year.  After all, she did learn how to turn the lights on and off for us when we are entering or leaving the room.  It may have taken two years of working on it to get her there, but I can't tell you how very proud we all are of her for knowing how to help us.  Better yet, I don't have words to tell you how very proud she is of being able to do it!   Its the little things that make our hearts happy in her world.  What doesn't take a second thought for me to accomplish takes years of teaching for her to understand.

As we move into this new year with our little one we have so many hopes, so many dreams, so many desires for her and for what we want her life to be.  I find myself to be very, very emotional these days as I watch her struggle.  I also find my heart to be so very grateful. Its a complex balance between what I wish life was and what I'm so thankful that it is.  Maybe one day soon I'll get to the place where I allow it all to spill out onto these pages once again, but for today I think just scratching the surface is where I need to stay.