Ashley's Story

She will leave fingerprints all over your heart


"Mommy, Why are adult birthdays....

...different than kids?", Allie asked me last night as she gave me a birthday gift. Her gift to me was a foot massage. I giggled as I tried to figure out what she meant. "Did you not think my birthday was very good?" She shook her head "No". "It isn't any fun to have a birthday when you grow up is it?"

"I don't know? I enjoyed all the things I loved today, and so I think it was a fun day."

"You didn't have a party. You didn't have a cake. You didn't have any presents, and I don't want my birthdays to be like that."

"Then I think you should stay a kid forever." Then we laughed together.

Contrary to what the kids thought, my birthday was a blessed one and I did enjoy it(except for the rain that continued to cancel the planting of my flowers and the removal of the unwanted tree stump).

Something is up with our Ashley and we aren't sure what it is. She is in some type of sleep-scream cycle and we can't figure out why. She continues to sleep for the majority of the day and then wakes suddenly and screams until she drifts back to sleep. We have looked at everything. Her central line sight looks good and it flushes well. Her Mic-key button sight is not red or inflammed and it looks good. Her bowel looks good and her output is normal. Her labs are good and show no signs of illness or trouble. Her tummy is soft and not distended. Her liver enzymes are fine. We can't figure out what is making her so tired and so uncomfortable when she is awake. Once you rule out all of these things then the rest of her is a mystery. She is so complex and we have no idea where to look from here. I am praying that it will pass and she will wake smiling rather than screaming at some point today.

Someone asked if Ash ate solid foods yet. When she feels good she eats organic vegetables (level 1 baby foods) about 3 or 4 times a day and drinks sterile water from a cup. She gags on anything that has any type of texture to it and has no idea how to take food from her hands and put it into her mouth. The process of teaching her how to eat again will be very long, but we are pleased and so proud that she remembers how to swallow. She is fed into her gastric tube (Mic-key button) for 20 hours a day. The goal is to someday be able to teach her how to eat like the rest of us and not have the button at all. In all reality that day will come years from now.

A couple of days ago another commenter asked us what the "take -down" surgery was we had referred to. This is an operation that usually takes place a year post transplant that puts the loop of bowel which is now on the outside of her back inside and reconnects everything. Once this is done she will no longer have an ostomy bag and will use her colon normally. At this point she does not stool into her diapers, but rather into her bag. The operation is not an easy one. It doesn't quite compare to transplant, but it does come with its own set of complications. I expect Ash and I to be back in Omaha sometime in August for this surgery and we will more than likely be there a couple of months as long as things go well. In some ways we look forward to this operation because it signals a part of the process being completed and she will live a more normal life. In other ways I dread the pain and discomfort this brings to her. Anything that makes Ash hurt bothers me, but I know it is a necessary part of transplant.

The road continues to be long and full of ups and downs. Sometimes her days are good and happy and other times they are more difficult. This week she is struggling and tomorrow we go for chemo again in Dallas. We will begin our day at 3:30 and be on the road by 5:00a.m. We should return by 7:00p.m. Your prayers for our little one tomorrow would be so appreciated. I am going to get back to holding her and I will attempt another post later if I get an opportunity to lay her down. Thank you so much for checking on her. Have a blessed day. Trish


At 4:28 PM , Blogger Sarah's In the Midst of It said...

Wow, I didn't realize you'd have to be in the hospital so long after her take down surgery!

I'm praying that your sweet girl perks up, and that this is no big deal. I'll be praying for you as you come to Dallas tomorrow for another round of chemo. :)

At 9:31 AM , Blogger Melody said...

Could it by any chance be teething or even growing pains? All of mine go through stages of sleeping a lot and it never fails that they seem to get taller during that stage. Two of them have woken up crying during this time as well. I know that your Ashley has some different issues and you may not be able to treat her the same way, but when mine do this, I give them a dose of Tylenol before bed. If it stops the crying, I know it is a minor ache like a toothache or joint pain from growing.

I hope all is well with your precious baby girl and that this will pass soon!


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