Lately

Ashley Kate's interests have centered around being on her bicycle.

Every chance she gets! She has made such great progress, and as I run to catch up with her each day I fight back tears of joy. She has complete independence and is able to go where she chooses. If we say its time to go back home she turns down the opposite street. Its so much fun to watch her be a little girl. So much fun!

Each day she signs, "shoes...outside...bicycle...please". She signs it ALL DAY LONG.

Friday afternoon she rode for 4 miles! 4 miles!!!

There are moments in my days when I wonder if we are making the best decisions for her, and then there are moments in my days when I watch her doing all the things I feared she would never be able to do that I know we are making the best decisions for her. She's getting the opportunity to be 6 years old and that is an opportunity I feared she wouldn't have. On this side of our decision I'm glad to say she is every bit of 6.

In fact we are 4 short months away from celebrating her 7th, and we are in the beginning stages of planning her birthday party. Its so much fun to be her mom. So much fun! There are LOTS of details being worked on and my notebook is filling up with plans.

I love celebrating her life!

To Whom it May Concern...

...when referring to my youngest daughter be very careful what you say and who you say it too. Your unkind, cruel, thoughtless, ignorant comment, the other night didn't make you look cool in front of your friends. Quite the contrary...you looked like a fool.

Your words stung the heart of my 14 year old beauty and I'm so very grateful she didn't have to face your cruelty alone. She turned her head, hid the tears that stung her eyes, and allowed her friend to shut you up. I'm so very thankful that he did. Just like her daddy and I had hoped this young man would he did his best to protect her from anyone who would hurt her. He did his job well.

If you had ANY idea how amazing that, "...retard in the wheelchair" to quote your exact words... is or HOW much she is loved and adored you may have kept your opinion to yourself. If you had any idea how much your carelessly spoken words would hurt the girl you were trying to impress I can only assume you may have thought twice about saying them. You didn't come across as cool. You came across as heartless.

In the future I can only hope that you might remember this night, and how hard it was to swallow the taste of your own foot.

I'm thankful my son was on the field that night and not anywhere close enough to hear you run your mouth about his baby sister. For your sake...I'm thankful.

So to answer your question let me say that "retard in the wheelchair" is Allie's baby sister, Blake's favorite person in the whole world, and everything to our family. She will be attending many, many baseball games in the next 2 and 1/2 years so get used to seeing her there. She's part of our family and has EVERY RIGHT to be there cheering her brother on. As far as I'm concerned you can stay home!

Totally love...

...listening to our baby girl giggling as she watches Tinkerbell for the 1,000 time!

She's totally unaware that I'm standing at the door of the play room, taking it all in, and enjoying every single second of her happiness.

OH HOW I LOVE HER!

Life is far from perfect, her world isn't an easy one to reside in, and the struggle ahead of her seems an impossible one to survive...but...my baby girl doesn't know any of that. All she knows is that she is safe tonight, loved beyond measure, and tiny fairies in run away boats down the river make her laugh until her sides ache!

She is by far the best gift I've ever received. Thanks so much for thinking of me the day she was born. I'll be forever grateful:)

Congratulations!!!

Its my JOY to announce that our Allie...

is officially a Pine Tree High School Cheerleader!!!

We are ALL so proud of her!

Its been a very LONG week. Lots of hard work, sweat and tears. Not to forget the sleepless nights I've had as I prayed for my girl. I'm sooooo happy for her because this is something she wanted to prove to herself that she could accomplish. I knew she was capable, but some days I wondered if she thought she was. She spent many, many hours in the gym working on her tumbling skills this last month. There were days she could barley walk from all the extra hours of practice she was putting in. She worked so hard for this.

Its hard to put into words how good it feels to see your kiddos succeed in what they set out to do. I'm a very proud mom. My big kids are so amazing. As is my little one too! I'm very, very blessed.

Off to bed now that we are home. We have a 3 a.m. alarm set to be on the road by 4 for Allie's volleyball tournament tomorrow. Blake has a couple of games here in Longview and he's on his own since Dave is working out of town for the weekend. We enjoyed watching him play this afternoon.

Just wanted to document Allie's newest achievement. Again, we are so proud! Have a great weekend.

Reminded

A late night trip to Walmart with Allie to get hair ribbon brought with it a reminder of what is truly important.

As we walked to the back of the store I shared with Al the stinging in my heart as I walked past the over stocked shelves of all things Easter related. "My heart hurts every time I see all of this. How I wish Ash could skip, and run, and gather as many eggs as her little self could find to put into her basket."

"Mom, I'd rather her be as happy as she is and celebrate every day with her than just get excited about a few days of the year like all the rest of us. Life is better like this."

With that reminder I smiled inside knowing that without the struggle my kids would have missed out on the bigger lessons in this life. I love my big kids. Love them for being who they are because of the precious baby sister they were given.

Still the hurts of what we are missing with her seep into my soul every once in awhile, but they are quickly overshadowed by all that we haven't missed. Its a tangled web of longing for the life we are missing with her and yet still loving the one we are living.

An attempted Explanation

I feel as though I've explained Ashley's central line issues and lack of remaining central line access hundreds of times over the last year and a half. I'm not sure if I haven't done a good job of explaining the situation or if perhaps those asking again missed those explanations. Either way I'm going to give it another go today.

Just this past weekend as I was sitting at a volleyball tournament a physician overheard a conversation I was having with a friend about Ash's current infection and asked, "Why does your daughter have a central line?"

Its something I get asked repeatedly on the blog and it happened to be the fourth or fifth time that week. I don't know a good, short version answer for such a question. It seems that the answer leads to another and another and another question and before the conversation is done I'm asking myself if perhaps I should have answered the original question differently. You would expect I'd be good at this after 6+ years of central lines, but I'm not.

So...here goes...

Ashley Kate receives all of her nutrition via a little plastic catheter called a CVC or central venous catheter or central line.

She requires a central line because she never had a small intestine that functioned, absorbed, or moved food adequately enough to sustain her life. At this time she doesn't even have a small intestine. If you add up all the weeks of her life that she has been free of a central line it totals just over 1 year.

She was born at 28 weeks gestation with only half of the normal length of bowel that a full term baby would be born with. ( The length of bowel doubles in the last trimester.) 13 days after her birth she developed a condition called Necrotizing Enterocolitis. Referred to as NEC. Basically her small intestine was not developed far enough along to digest food. Part of the intestine died as a result and had to be surgically removed. They removed 32 cm of small bowel that day. On September 27, 2006, at 13 months old, weighing only 11 lbs, she had a small intestine transplanted. On July 31, 2010 that small intestine had to be ex-planted from her very sick body due to severe rejection of the organ.

Ashley Kate is not able to eat, absorb, or grow from food like you and I do. She must be fed a soulution of liquid nutrients called TPN(Total Parenteral Nutrition). It is infused into her veins through her central line.

A central line must be inserted into one of 6 access sites in the body. You have 2 jugular sites, 2 sub clavian sites, and 2 femoral sites. Once those access sites are used up(usually occurs from repeated access from central line placements) life gets very difficult and surgeons are forced to get creative with placement options(such as the hepatic vein placement Ashley came home with in Aug of 2010. Not ideal, very dangerous, but worked for a short time). Eventually there are no options left and the only outcome is the patients demise from lack of nutritional supplementation. I could go on and on trying to explain how they place the catheter, tunneled, non-tunneled, etc. but I won't. Trust me it gets complicated and pretty boring if you don't live in the world of "central lines". I'll just say that all of Ash's sites are used up, collapsed, not passable by wire, or no good.

Because she has been left without another access point for a new central line to be placed we are not able to pull out her current line with each infection. Instead we choose to treat it with IV antibiotic and so far we have been blessed. Even though we have been told she's had infections that are not treatable she has managed to survive each one to date and bounce back again and again.

Her current line infection is being treated with vancomycin over a 10 day course. At the end of 10 days we will draw blood cultures(if the line is working that day) and see if they come back clear or not. Its the best we can do.

It seems to us that she is doing well with this infection. I believe the meds are working and that her central line and her blood stream is being cleared of the bug. I base that opinion on her overall demeanor and appearance. As of today we do not have blood return in the infected lumen of her central line. It comes and goes as of late. I never know when its going to work and when its not.

Ash is happy. Feeling good this week. Sleeping well. She has gone to lunch with Dave and I a couple of times and attended one baseball game. She is holding her own with this infection. She loves to be out of the house and on the go. I'm hoping as we complete this course of treatment that she will be able to get out more and more.

Thank you so much for your prayers and your concern. I'm still so humbled with each and every comment that lets us know you are walking this path with us. What a journey we are on!