Another Day

We woke this morning one day closer to home. That's what keeps me waking up here. Each day we accomplish another step on this journey. So far its not gone the way I had hoped, but then again I never even hope to be back here. Its rocky and will probably remain that way for a while, but she is managing with an incredible amount of bravery and determination.

This morning Ash was put through another procedure to try and secure a way to draw the amounts of blood needed to daily manage and stay on top of what her body is going through. They placed another picc line, the conventional kind, at the bedside. So we now have a way to draw blood without the multiple sticks. I'm hoping and praying it remains functional. This is the 4th attempt at a line of some kind. Her body is so beat up and bruised. I will share with you that I have never known a stronger person than my daughter. She is the one I look to for strength, for fight, for determination to get through each day. This tiny four year old bundle of little girl is the most amazing human being I 've ever had the privilege to love. It is a privilege to love her the way I get to.

Today she is requiring another platelet transfusion as well as albumin. The thymo treatments are wiping out cells left and right and unfortunately it isn't picky between the ones she needs and the ones she doesn't. Her bilirubin is steadily climbing. This morning it was at 9.4. This is very concerning to me. Ash's liver is transplanted. It has never shown an increase or any damage from any of the times she's battled rejection. I'm so concerned about what is happening to this organ as well. Most of the issues we are currently dealing with are results of what the drug is doing to her body. I'm wondering if the thymo is hurting her liver too? On pathology this week we learned that the distal portion(lower end leading to the colon) looks like some healing may be taking place. A few villi are present down there that had not been. The proximal portion of the bowel(the part leading back toward her stomach and the majority of her transplant) doesn't show any changes. That means it is not healing and getting better, but it didn't get worse either. I'm focusing on the fact that it didn't get worse. Maybe the thymo is going to work and this could be evidence that it is slowing or stopping the progression of the rejection? That's what I hope. Her tummy is still very distended. The skin completely stretched to its maximum capacity. She seems to be dealing with the discomfort better today so I'm thankful that she has at least adjusted to the way it feels. My biggest hope for today is to hold steady and stay strong. Rest is what she really needs. Its not coming easily, but she needs it desperately.

Allison Brooke walked through the doors of this room last night and my burden instantly felt lighter. As I hugged that beautiful girl tight I could just feel a release of some of what my heart had been carrying. I am so grateful to Dave's mom for bringing her to me. I think I needed to see her as much as she needed to see Ashley Kate. It was a little rough and kind of crazy in here last night and at one point I looked over to see Allie cuddled up in the chair quietly crying. It broke my heart, but I knew this would be hard for her. She needed to be here to see for herself so that she might process the emotions a little better. I explained what all was going on and why. Shared with her how much stronger Ash is now. She's not that tiny baby lying on the ventilator Allie walked in and saw those few years ago. She nodded her head and let me hold onto her for a few moments as she cried. They didn't stay long last night. We were all so exhausted so they left and went to the hotel to sleep. Before leaving I was allowed to see what I had so desperately been missing. Allie stepped up to Ash's bed, kissed her several times, smoothed her hair and whispered, "Goodnight baby girl. I'll see you in the morning." What a soothing balm it was to my heart to watch my girls together again. Our big one loving on our little one. I needed it. They did too.

I'm feeling strong this morning. Perhaps its just that my Allison is here. I don't know what it is exactly but I'm ready to take on this week. Allie will be a beautiful distraction in the midst of all the hurt and pain. I'm so thankful to have her. She came to take care of Ashley, but I think she's really going to take care of me. God is good.

I am hoping to spend some girl time with Allie. Nails, shopping, lunch just to catch up with her this week. Grandma is happy to sit with our Ashley. The key will be stability. If Ash maintains then I feel like I could step out for a few hours with Allie. I'm praying for a stable week. We all need one.


Thank you for your presence here. Your kind, heartfelt, encouraging words. I cry as I read about the tears you shed for our little one. How blessed we are to have this group of people all across the world who love our daughter. Your prayers and your pleadings to the Father touch my heart in a way you'll never be able to really understand. That you would love a stranger and her baby the way that you all have is so humbling. Thank you so very much. God bless you today and may you have moments in your day to just enjoy the simple things.