Ashley's Story

She will leave fingerprints all over your heart

1/12/2008

"She's still here."

This morning Dave and I were working together as we prepared Ash for the day. Things like meds, feeding pumps, ostomy bags in addition to the normal diaper changing and dressing can make it enough work for more than one person. She smiled and giggled at us as we sang our good morning song(its quite original) and greeted her. Then Dave said, " Sometimes I look over at her and I think to myself "I cant believe she's still here with us". Do you ever think about that? She's still our little pickle and she made it." I just nodded my head yes. I really have thought the exact same thing. On several occasions and sometimes several times a day. I am amazed that shes still here.

In fact, I had that exact thought first thing this morning as I looked at her. I had a very restless night. Filled with nightmares that involved Ashley Kate. Before her transplant I struggled with lots of nightmares. I would be afraid to close my eyes each night because I knew that somewhere in the night I would battle images of losing her. Its been a long time since I've had to struggle with thoughts like that, but for some reason the images of loss were all to real and I woke searching her crib making sure she was still there.

Things have been going well. I sat in the living room visiting with my mom last night and announced how much I love being home. I do. It feels so right to be sitting around the table, making dinner, folding laundry, attending ball games, sitting in carpool lines, etc. I love the normal everyday things that take place in our lives. Ashley Kate is so happy. She has learned many new things. Her favorite new things is playing catch. She will play with anyone. She is so proud each time she chunks something across the room. One of her other new favorites is rolling the ball. We use her big therapy ball that is actually too tall for her to see over, but she loves to push it across the floor to one of us. You should see the smile that comes across her face! She has also begun to roll from side to side. This is actually a big one to us. For the past two years Ash has used NO rotation of her trunk. So to see her twist from side to side on the floor is actually a lot of progress. This morning she had turned herself completely around in her crib from were I tucked her in last night. We are very encouraged by this. At last she is starting to try and get somewhere other than where we place her. She still has no tolerance for being on her tummy. Within in seconds of placing her there to work on therapy or new skills she begins screaming and flips her self over to her back. She has never gone from her back to her front, but with the new side to side rolling I can't help but think it is someday going to come to her. She is still as stubborn and ornery as ever and we are still hoping to turn those behaviours into something that will assist her.

We start therapy again this week. Hopefully with Ms. Sue(if we can get on her schedule) and also with a new occupational therapist for feeding therapy. Ashley has lost ALL interest in eating and drinking. We can't seem to persuade her to open that little mouth for anything. We will more than likely be battling this issue for many years to come. She still has a nasty cold. It sure is persistent. So each morning we cough and sneeze and gag for a few hours. Then through the day she sneezes and her nose runs a lot. At night the coughing and gagging begin again. I don't know how long she will have it, but as long as she stays fever free and her lungs stay clear she should be alright.

We are so thankful for Ashley Kate as well as many other things in our lives. She brings such joy and happiness to our home. Just looking at her makes us smile. I couldn't imagine things being much better for us than they are right now. God is faithful and loving. He blesses us again and again. Ash is still here and her daddy and I are still amazed by the God we serve. Take care guys and have a great weekend. Trish

16 Comments:

At 4:44 PM , Blogger Connie said...

I'm so glad things are going well and that you are still home. She is such a precious work of art. We are still praying for y'all and thanking Him for the blessing of your little one.

 
At 5:40 PM , Blogger Sarah's In the Midst of It said...

Ashley has worked her way into so many hearts the world over! I love reading your posts, especially ones like these that rejoice in some of her new triumphs! I'm praying for many, many more :)

And you've probably already been told about this family, but there's a micropreemie (1 1/2 lbs.) named Gwyneth who was born this week, and she and her mom, who has cystic fibrosis, could use all the praying and encouragement they can get. Their blog is at cfhusband.blogspot.com If anybody knows how to pray for a tiny baby, it's you Trish!

I hope your weekend is happy and uneventful :)

 
At 6:52 PM , Anonymous Grandma said...

I too am amazed by that little pickle and thank and praise God each and every day that she is still here. He is so merciful and mighty! I have also added little Gwyneth to my prayer list as well as her family. All these precious little ones need our prayers as do their families. I love you Ashley Kate and will see you soon. Hugs from Grandma

 
At 7:33 PM , Blogger Keri Ann said...

Smiling. Ear-to-ear, I'm smiling. This post makes me so happy! That's all I can say! :-)

 
At 7:38 PM , Blogger Laurie said...

Trish,

It brings such joy to my heart to come here after these months and read about you being at home. I know you are at peace being there with those you love the most. And I am so blessed that Ash is still here, so many prayers have been answered for her. With all that she has been through, I can sure understand her not wanting to be on her tummy. I know that she will test it out on her own and do it when it feels right for her. She needs her stubbornness right now. It is the only control over her little life and all the hospital stuff. Your heart sings through your posts Trish, and I am so blessed that you still keep us informed. Ashley is part mine too you know:) I have adopted her as a granddaughter with my two grandkids. I am so thankful for her grandparents also, as they can breath deep again and have you close. Have a most wonderful weekend and prayers continue daily for Ashleys healing in Gods time.
Be blessed and enjoy the Normal. You have all earned it.

Love, Laurie in Ca.

 
At 9:18 PM , Blogger sarahdodson said...

How wonderful that she IS still with you! So happy to read this post.

 
At 5:27 AM , Anonymous Follower in PA said...

Still praying for your little gherkin....thought you'd enjoy this!

http://www.youtube.com/watch?v=CT7x3VnrqbA

 
At 5:33 AM , Anonymous Follower in PA said...

http://www.youtube.com/watch?v=CT7x3VnrqbA

Not sure why this won't highlight but if you go to Youtube and search, search for the video "Who Am I" by Casting Crowns. It's worth your time and made me think of your little gherkin.

 
At 5:20 PM , Anonymous Kathleen said...

Yay Ashley! You can tell she loves being home.

 
At 6:03 PM , Blogger Gretchen said...

I am blessed at the Lord's work in your life. I'm so glad you all. The mundane things that we all take for granted are really not mundane at all. I'm so glad that Ashley and you all are doing well, and will pray for that cold to go away.

 
At 7:44 PM , Blogger Laurie said...

Trish,

Thinking about you today and wishing you a wonderful and uneventful week ahead at the Adams house. Praying for her cold to vanish and for her to get her appetite flowing again. One day at a time as we are so grateful that she is still with us. I know in my heart it is going to be for a very long time. She is healing at home with love. I love this.

Prayers continue,
Love, Laurie in Ca.

 
At 8:08 AM , Anonymous Stephanie - KCMO said...

Congratulations to Ashley for rolling from side to side. I know this is such an accomplishment for her. Keep moving those little muscles! Love, Stephanie

 
At 8:52 AM , Blogger hennhouse said...

Amen and amen.

 
At 1:14 PM , Blogger Sun said...

Praise God that she is still here and that you guys still allow us to read and follow along on her journey! Sunshine

 
At 3:46 PM , Blogger Laurie said...

Hi Trish,

It is Monday and I am still here too.
Praying for you to have a wonderful week and for Ashleys cold to go away and her little body to keep healing.
I am grateful for your family to be together under one roof and pray it stays this way for ever!!

Love, Laurie in Ca.

 
At 6:40 PM , Blogger Ivey's Story said...

I love these positive posts. You all have made it so far. Ash is one amazing doll baby.

And Trish, all of those things, except the ost. bag, we do every day too. Just come on over whenever you want to feel like it is normal to do all of that. We could rotate setting up the feeding pumps. I swear, that humm of it rolling over will stay with me until the end. I think I hear it in my sleep. Do you?

 

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