Ashley's Story

She will leave fingerprints all over your heart

8/30/2007

My First

Last night Ashley Kate gave me my first hug. It was the sweetest moment of my life. I watch her hug and squeeze her daddy over and over again and it warms my heart, but to have those tiny arms squeeze me with all the love she can muster was so very sweet. I thought my heart would burst! My eyes filled with tears as I told her over and over how very much she is loved.

Things went very well today. I was so scared about the removing of her central line. When Ash was in the NICU we watched as the doctor removed a central line in one of her roommates and it was brutal. It was the only experience we had to draw on and it was very frightening to think that Ash would have to endure that today. Her experience was nothing like we had witnessed. It was quick. It went smoothly. It was better than I could have hoped for. For the first time in two years I did not have to care for her line before tucking her into bed.

Our clinic visit went very well. Ashely is no longer taking ANY steroids! YEAH!!! We were able to stop three more of her medications and by the end of September she will only be taking her anti-rejection. We have gone from a list of 15 to 1! We are so excited for her! We will also be down to taking only one set of labs a month. This was such good news to us. That means that Ash will only have to be stuck for blood draws one time each month. This makes me smile. I really did not expect them to say yes when I asked, but when they did I smiled inside. We discussed the possibility of using horses in Ashley's physical therapy and the answer was no. They said that she has been immunosuppressed for so long that it would not be safe for her right now. Their answer was no for now but not no forever. We will re-visit the idea in a year. As we were leaving they said to us, "We would like to see you back in clinic a year from now." Can you believe that? A year from now? YEAH ASH!!! We will consider the possibility of her take down surgery next spring but we really have no idea if we will be ready to go through it at that time. We will just wait and see.

Its been such a positive visit. We met with friends each day and enjoyed their company so very much. How blessed we are to have met them all. Most of the people we came into contact with while in Omaha were absolutely wonderful and I believe with all my heart that it was not an accident that we came here. We will forever be changed by the friendships we made.

Well, we have decided to begin our drive tonight. We are going to lay down for an hour or two and then get up and drive as far as Oklahoma. We hope to be on the road by midnight. I am going to join Ash on the bed and close my eyes for a couple of minutes before heading out. I will visit with you all tomorrow. Goodnight and God Bless. Trish

15 Comments:

At 11:06 PM , Anonymous Marlain said...

Hurray for all the great reports I just read! I hadn't checked in over a day... I was so excited by all the good news you have gotten in Omaha. I imagine you are driving by now and that the whole way home you will be driving with a smile across your face that will make people wonder about you!
Praise the Lord!

Marlain, Jeff & Madison

 
At 12:02 AM , Anonymous Anonymous said...

Amazing update! Tears of joy are streaming down my face as I read this. I am once again reminded of the blessings that our children are to us everyday. Praying for you two to have a safe trip back home (and through oklahoma~I know some people here will be awefully happy to see you two!). ~Chan~

 
At 3:55 AM , Blogger Suzy said...

I'm soooooooooo happy for you all!! :-D Fantastic!!

 
At 6:56 AM , Anonymous Dee Dee in NC said...

Such wonderful news! God just keeps marching on with whatever He is doing in Ashley's life, to glorify Himself through her and His love for her. I am so glad your family is having such a time of sunshine (what is it your husband is all about, rainbows & daisies, or something like that??)... after so many scary and heart-wrenching days of storms and barely being able to see your hand in front of your face yet just purposing to walk in complete faith.
May the time of sunshine go on and on, the dark days behind you, and Ashley THRIVE. God Is big enough for that, and I pray it is His will to help her to advance in her developmental timetable by leaps and bounds in the months and years ahead.

 
At 7:23 AM , Anonymous tamara cosby said...

SO awesome!!! Can I ask a silly question? Ok, two, ha! What is the take-down procedure, what does that mean? What is left ON Ashley? I am not up on my terminology so I apologize if this repeatitive.

 
At 7:36 AM , Anonymous Anonymous said...

So glad to get yet another incredibly encouraging update! Praise God!
We love you all so much.

 
At 9:19 AM , Blogger Amy T said...

Awesome! Praying you are home safely (or almost at least). That is such an awesome amazing report! Who would have thunk it a few months ago, huh? :) How far she has come! I can't imagine how much farther she will go in the upcoming months. God bless you!

 
At 9:51 AM , Anonymous Brenda in N E said...

Yay! Congrats on the good report! I'll bet that now that she's down to so little in the way of treatment that she'll just take off developmentally in a million different ways... almost like taking her little finger off her "pause" button. You'll all feel so free, and she'll just thrive under a life with so much normalcy to her days! :) What a joy and a relief it must be to have had prayers answered so fully.

 
At 10:17 AM , Blogger Chuck said...

Just wanted to let you know that I announced the Good Report concerning the Cancer last Wednesday night to the church. They were all excited and praised God. We have also begun our 'next phase' and have been praying that Ash could walk.
We can't wait for that answer to come back to us as well!!!

 
At 5:12 PM , Blogger Morgy's Mama said...

thank you God for such a good visit

 
At 11:11 PM , Anonymous Anonymous said...

What beautiful news....God how can we praise you enough and thank you for your great faithfulness....A first HUG! How priceless, how amazing! A growing girl who is almost free from meds, soon she'll be walking:) I believe it. I rejoice for you! Colleen PS The tumors are smacked down too, the news we've all been waiting for...

 
At 1:35 PM , Blogger Karen said...

What fabulous news! Praise God!! Love and blessings, Karen

 
At 1:45 PM , Blogger Amanda said...

Miracles and more miracles! I'm so excited for Ash!

 
At 5:17 PM , Anonymous Anonymous said...

I am so happy that the scans were negative and the central line removal went smoothly. I am elated that she is doing so well. That just makes me so proud! God is so good all the time! She is such a precious little baby girl. I am just so glad that she is heading into a more positive status with her health.

I am truly sorry I have not posted in awhile. You have all certainly remained in our prayers. It has just been so crazy after our grandbaby passed away. I had to enter the hospital week before last due to severe depression. Then I came down with an infection and I am on steroids. Then my hubby, Matt had an apendectomy this past Wednesday.

So after saying all that I just wanted you all to know we have not forgot y'all at all. Praying for you steadily. God bless you.

Love Always,
Cindy Adams

 
At 9:19 AM , Blogger Wendy said...

Finally catching up on reading blogs this morning. What wonderful news! Ashley truly is one of God's miracles!

I was sorry to see the Hippotherapy is not possible right now - but it sounds like it is a possibility in the future as Ashley's immune system gets stronger. She has such a wonderful future ahead of her that anything is possible :)

 

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