OH, YES SHE DID!!! It took about ten minutes of footage to get this on tape, but she finally did it and I can prove it. I was so amazed to see how "easy" it was for her to stand up on her own. She did so good and I am so proud.

I know she's not quite there, but she is on her way. More so then EVER before. A year ago I would have never dreamed she would be standing up and taking steps. The parallel bars give her a confidence we have never seen in her. Someday she just might step away from those bars and begin walking across the floor. If I've learned anything about Ashley Kate its that anything is possible. Anything!

Enjoy.

Ash's skin wounds around her stoma aren't healing quickly. Its amazing how fast it can change from normal, healthy looking skin to red, inflamed, oozing and bleeding. It literally can change over night.

She has been going without an appliance since Friday afternoon trying to give her skin the best chance at healing. She is lying on towels, diapered with a towel around the stoma, and Sensi Care Cream(a skin protectant) is covering the injured area. I'm doing everything I was ever trained, taught, or shown how to do. I've tried every single suggestion and at this point don't know what else to do.

We have an appointment with a wound/ostomy nurse, but can't be seen until Dec. 3. Usually these things heal or improve in just a matter of days. My hope is that our issues will be gone by the time the appointment rolls around. I can't imagine her dealing with this for that long. I really can't.

How did this happen? Well, she's 4 years old. When she gets itchy or irritated by the ostomy bag she pulls it off. Sometimes this happens during the night and I don't find it until time to fill her feeding bag or change her. The content in the bag is coming out of the small intestine. The job of the small intestine is different than that of the large. The small intestine's function is to use enzymes to break down the food we eat in order for the body to absorb the nutrients from that food. So those enzymes which work to break down the food can be very acidic and damaging to the surface of the skin. This results in skin breakdown. Since we are bypassing the large intestine(which happens to be where the majority of fluid is absorbed) the content(or stool) that is coming out through Ash's stoma(from the small intestine) is very liquidy. The liquid runs underneath the wafer the ostomy bag is attached to and sits there, damaging skin, until we see that it has happened and can clean it off of the skin. Its not uncommon. In fact it is one of the major issues most patients with an ileostomy face. Its very painful, burns really bad, and takes days to heal.

The hope is that we can keep the skin dry, protected from further breakdown, and clean. The problem is that without the ability to wear an appliance to catch the stool coming from the small intestine then it is still coming in contact with the damaged skin. I don't know how to keep it off of it. I'm using everything I know to absorb the stool, but the bowel empties a continuous stream of stool. Basically we are stuck between a rock and a hard place. Its miserable!

I've got lots of other, good, exciting new to share. Some great video footage which will bring tears of joy to your eyes, and photos of Ash in her new chair, but at this point I'm up to my elbows in poop. Literally! I'm hoping to get Dave to post the video sometime today. Or at least before we leave town.

Thanks for all your suggestions. I'm trying them all in hopes of helping her.

This post goes out to any other transplant moms whose kiddos still have an ileostomy and to any of my favorite transplant nurses(you girls all know who you are:) if your reading today.

Ash's skin is breaking down in the worst way around her stoma. It has actually broken down all the way into her transplant scar(which is midline) and down to her upper thigh under the stoma. I can't get her bags to seal NO MATTER WHAT I try and she is in a lot of pain. Its making me crazy. Last night I actually left her ostomy bag off for three hours, placed a wet wash cloth around the stoma, and held her in the recliner just so she could sleep.

I don't know what else to try. We use the Hollister one piece bag, with an adapt seal(made by Hollister), we have the stoma adhesive, stoma powder, and barrier wands. I've tried all of it in many combinations trying to get it to seal against her skin, but the problem is that her skin is weeping and oozing and is really not in tact enough for anything to seal too. This in turn causes more of stool to leak onto the wounded area and cause more damage. We are using multiple bags(up to 5 or 6) a day. I have cleaned, bathed, dried, and prepped the area in every way I know how to. Nothing is helping.

Ash is miserable. As the stool leaks it burn and sets her skin on fire. She is screaming and crying and nothing helps. If you have any tips, any advice, or any new products out there please let me know. I'll do anything to get the skin to heal and make her life easier.

Thanks guys. Trish

Swallow hard, fight the tears, and refuse to allow my heart to sting. Thats my plan.

Focus on the freedom, the ease, the independence it brings to her. Thats my plan.

This morning its not working, but I'm trying.

In the beginning I never dreamed this day would arrive, but for the past year or so I have known we were inching this direction with each inch she grew and each little pound she gained. We have been preparing our hearts, the children's hearts and our home for this day. I think more than anything its fear that we are facing. Just afraid of how life will work now. Afraid that others will look and KNOW she's disabled. Afraid of labels, and stigma, and questions, and finding the courage to share without shedding tears.

I still struggle with wanting normalcy for Ashley Kate, but truth be told she is so much more than just normal. I wouldn't trade this beautiful, amazing, miracle for anything. Not even legs that worked without a fight. I wouldn't. I couldn't love her more if I tried.

At some point today her chair will arrive. It will be here. In our home. I wonder what we will do then? I'm just not sure.

We still have no idea how we will be transporting it. We haven't found a lift system and haven't had the Explorer converted yet. I'm not even sure if it will fit in the Explorer, but thats our primary vehicle so something will work out. Somehow.

Hey, at least its PINK! ( Although, had I known she was going to fall head over heels in love with Lightning McQueen from the Cars movie I might have gotten it in red with his number on the base. Just kidding, not my baby girl!)

Swallow hard, fight the tears, ignore the sting. Stick to the plan. Stick to the plan. Stick to the plan. I can do this. We can do this. Its a blessing for her and for us. Its a blessing.

Swallow hard. Then repeat.

Then repeat.

If I could stay inside by the fireplace this morning and not go ANYWHERE all day I WOULD. If I could.

Since I can't, I think I'll follow a big yellow school bus 2 hours one way just so I might catch a glimpse of my kid on the basketball court. You know, its what us mom's do. Then I think I'll follow that big yellow school bus 2 hours back the other way. Just so I'll be able to pick up my kid when they arrive back home tonight. You know, its what us mom's do.

To tell you the truth I couldn't be happier about having the opportunity to do so. Even if I am longing for a "go no where do nothing but laundry kind of day".

Ash is going to grandma's house for the day(after therapy and all).

I am SO looking forward to next week. We need some down time and we plan on spending it with my favorite people in the world(next to my kids I mean). My sisters! Yeah, me. The holiday has me smiling already.

...our new home!

Its beginning to feel comfortable, like we belong here, know what I mean?

Its unusually chilly in Texas this week and its making us all smile. A fire is glowing in the fire place, stockings are already hung, yummy candles flickering, Christmas gifts needing wrapped, carols playing, and a happy baby girl(who's not so much a baby anymore) in her room and not a h________ room(dare I even say it out loud?) All of this and more makes this place feel like home.

Life is blessed. We have settled in and the holidays are all around us making this home feel like ours and our hearts feeling blessed to have it. Lights go up on the outside Friday and the wreath on the front door. I'm just so happy!

I'm taking a few minutes this morning to sit still, reflect on how good God has been to us, and enjoy the peaceful feeling that fills our family room at this moment. I'm out the door in just a little while to serve lunch at the school, coach P.E., coach a 2 hour basketball practice, then pick up Blake and his friends, take them to dinner, drop them off at youth group, and then jot into the sporting goods store for new basketball shoes for the kids, and then I'll make it back home around 8 or so to find my place next to Dave on the couch and settle in for the night. In between all of that Ash has PT this morning and I've got to pick up lunch for Allie. Its going to be a long, busy day and I'll have trouble walking after spending 3 hours running up and down the court with all my girls, but I like it this way.

So from my house in Texas let me just wish you a blessed day filled with all the things you love and hold dear to your heart. Trish

When they hurt...I hurt.

When tears sting their eyes...they sting mine too.

When heartbreak comes to one of them, any of one of my three...my heart breaks too.

When disappointment in their lives causes pain... my disappointment is multiplied a thousand times.

When their world seems unjust...I want so desperately to right the wrong.

When they cry themselves to sleep...I cry too and can't seem to find sleep.

Tonight I realized that being their mom is not enough. I can't fix things for them. I am not God, I am only mom. I can't protect them from the growing pains that all of us must endure, but I assure you if I could I WOULD. If only I could make each and every one of their days pain free.

Tonight I'm getting just a small glimpse into what it might feel like as the Father's heart breaks for one of us because He just wanted something better for His child. All I can say is that it hurts.

Tonight I'm praying for my kiddo because he/she needs it.

How I wish that loving them was enough to make it all better. Remember the days when a band-aid fixed all that ailed them?

In just a little over two hours Allie and I will be taking the court together for the first time. I'm nervous, so proud and a little too excited. I returned to the court and took on the role of middle school basketball coach for one reason and one reason only. Allison Brooke. She needed it. She deserved it. She's so worth it. All the "headaches" of coaching, the long hours in the gym, the added here and there to our schedules have been worth it. Even if we never win a game or if she never scores a point its going to be amazing to be the one who looks down the bench and says, "Allie, go in for________."

She's not the strongest player on the team. I think thats pretty obvious when its made up of 6th, 7th, and 8th graders(she's only in the 6th grade), but she's a strong part of this team. I'm so proud of her athleticism, her work ethic, her talent, and her drive to be the best. So proud of how she takes my instruction, how she listens to the older girls out there who are mentoring her, and how her face shines when she gets a rebound, makes a steal, or scores 2 points.

After years of having to be away from her, of missing her "this or that" due to a long hospital stay, and having to watch her swallow her disappointment in an effort to love Ash more than herself, today will be one we won't soon forget.

Win or lose I'm making memories with my daughter, helping some incredible young ladies learn how to play a little stronger, and teaching them all how to stick with something even when it gets really, really hard (like running 3 or 4 sets of lines at the end of a 2 hour practice). I'm honored to be their coach and as proud as I'm feeling two hours before the whistle even blows I can't imagine how proud I'll be of them once the game actually starts.

Its a pretty blessed life I'm living.