Ashley's Story

She will leave fingerprints all over your heart



So...I should have been prepared by now. Packed and ready. Loaded and waiting. Except for the fact that I have put all of this off until now. The day we are supposed to be leaving. Maybe it has a little something to do with the fact that the girls have been sick and so has Dave's mom and I have been waiting to see if everyone regained enough health to actually make this overnight trip happen or not.

Maybe it has to do with the fact that I don't like leaving Ashley Kate behind. I mean there are very few MOMENTS or MINUTES in her 3 years that I haven't been with her so knowing that I am on my way out of town for an overnight trip is a little overwhelming to me. Dave and Blake are going to be in charge of taking care of her and although I KNOW they will do a great job I'm still nervous about not being with her. I desperately need to get over this, but life is really, really unpredictable in Ash's world and spending more than 24 hours more than 2 hours away make me crazy. She's still on IV antibiotics every 8 hours and breathing treatments every 6. When you factor those new developments into her feedings, her TPN, her med schedule and poop journaling its an awful lot to keep track of. Especially if your not used to doing it all by yourself. Someday I plan on taking you guys through a pictorial of what it takes to "tuck in a gherkin." I've been planning it for a while, but to be completely honest by the time I 'm actually doing it I'm just too tired to take pictures. Anyway, life sure was a lot simpler last summer when all we did was make formula and give FK each night.

I'm getting sidetracked. I really am excited about this weekend. Its a girls weekend for Al. It was part of one of her Christmas gifts. We are on our way to Dallas to stay the night in a hotel with one of her cousins. Then tomorrow we have reservations in the Galleria at the American Girl store for lunch. Both of the girls received gift certificates for Christmas and they have been looking forward to this weekend ever since. Allie loves her doll she received last year on her 10th birthday. She loves doing her hair and changing her clothes. Its one of the last "little girl" pieces I can find in her. Some of her friends think its a baby thing and then she has a few friends who enjoy the whole American Doll experience as much as she does. I kind of love those few friends. They make me smile. When she comes home and tells me stories about how they don't care who makes fun of them for playing with their dolls it makes my heart smile. Character. Self Confidence. Individuality. Leadership. I see all of those things in her eyes as she shares the stories.

Allie did make it to school yesterday. Her face looks really, really good. Still dry and patchy in some areas, but you can't tell unless your right up on her. Her main issue at this time is her hands. The tops of them have sores on them and thats embarrassing. The insides of her palms have blisters underneath the surface of the skin and they are SO itchy. She claws at them and that makes them burn and sting. Homework last night included lots and lots of tears because holding her pencil is making her crazy. We struggled through an hour of makeup work and it was about all she could take. This weekend will attempt to finish it all as we travel and then again on Sunday. Her arms are really yucky looking because she claws them while she is sleeping. She wakes up every morning bleeding and has lots of sores from the poison ivy. She wears a sweatshirt every day so no one will be able to see them. Other than those few issues she is back to her normal self.

Ash is still working her way back from the pneumonia. Like I said still taking antibiotics and breathing treatments. She is coughing much less and has had two successful nights sleeping in a lying down position without vomiting. Thats progress! She has no fevers and other than a rattle in her little chest and runny nose looks to be getting better. She's dumping but that's no surprise. Still on TPN. Again not surprising to Dave and I. Its been a LONG road back for her bowel and we aren't anywhere near healed. She has gotten to 65 mls on her feeding with the goal being 80 without dumping. I don't see any increases coming in the near future. The important thing to our hearts in this whole process is that she is home. Allowed to do her slow healing in her own crib and not a hospitals. That makes this much more tolerable.

So I find myself continuing to procrastinate the actual preparation for this trip. My posts continues to ramble on and on and if I have noticed that I'm doing just that then I'm sure you have too. Sorry. I've got to have the house ready for the guys for the weekend and our bags packed and ready to leave by 3pm. This isn't accomplishing any of that. Guess I'd better get started. Have a great weekend. Trish


What is it ?

Could someone please explain to me what it is about boys and their fascination with liquefying objects?

For the past week I have been hunting. Each day I wake up and go to my son's room in search of it. "What is it?" is all I keep saying. Over and over again I have searched. As the smell becomes more and more intense the hunt has become more and more important to me. There is something in this room that is turning my stomach. I've asked everyone to help. I have cleaned closets, drawers, lockers, looked under beds, moved furniture, emptied his desk, searched in his backpack, everything. I tried hard not to offend him as I would ask every single day, "Why does your room stink? What smells?" I mean I'm used to the smell of bat bags, dirty uniforms, cleats, etc., but this was something different. Really different, but yet strangely familiar.

This morning as I opened my bedroom door it hit me. It had made its way into the family room. The smell had come out of his room and was slowly taking over my house. It's making me ill. I've burned every candle, plugged in air fresheners, and used Lysol on everything. The smell is so awful. I made up my mind this morning to hunt all day if I had to, but I was going to find out where the smell was coming from.

So let me just ask you this. How long have you been reading our blog? If you've been with us since the beginning then do you remember a post written in early November of 2006 about a little issue we had when the TSA guys at the airport searched my son's backpack? If you don't remember or are fairly new to this journal then let me direct you back. The name of the post was "SECURITY ALERT". Now let me warn you its a long one, but well worth the reading. Go ahead and skip on back and read it.

This morning I finally discovered what I had been hunting for. My son(who hasn't been bothered one little bit by the smell, but extremely bothered by my request for him to join me on my little hunt) will be surprised to come home and find that I have been successful. Oh, yes I have been successful. If your stomach is easily turned then let me warn you to stop reading right here. If your curious about what the culprit was then go ahead and read the next paragraph.

In the back corner of Blake's room, between his bed and his set of lockers sat a lovely little box. This lovely little box is something he is quite proud of. He purchased it and its contents with his own money. Next to this box he has two brand new poles leaned up against the wall. Again he is so proud. He purchased the poles also. One for himself and one for his sister. Honestly, why I didn't discover this little box sooner is beyond me. Had I found it last week when the smell first made itself known then I'm quite sure it would have never gotten this bad. Anyway, let me just share with you that I have NO intention of opening this box. Nope, I sure don't. You see I was the one who opened the backpack that fateful day in November 2006. I won't make that mistake again. I have gotten the box as far as the front porch and there it will sit until lunch time when Dave can come home and do away with its contents. I don't have to actually open this box to KNOW what has happened inside of it. Two weeks ago we took a little trip to Caddo Lake. Before leaving town I purchased Blake a container of live bait. Night crawlers. A little blue Styrofoam bowl of worms. Yes I did. Just in case he wanted to use something other than his new fishing lures. I'm quite confident that inside of his new tackle box we will find a little blue Styrofoam bowl full of content that once had the form of little, wiggly, crawly worms that made their way through the mud of East Texas. No longer in their native form( because they must be refrigerated and not roasted inside of our home) I know that once the bowl is opened it will contain a version of what once was. A LIQUEFIED version!

Honestly, I had no idea that liquefied worms and liquefied broccoli smelled EXACTLY the same, but please take my word for it. They do.

Thank you God for my son. This child whom I love with my whole heart. Without him I would have missed out on so, so much! Things like rotten broccoli and decomposed worms. My life would have not been the same.


The Heart of a Father

Last night as I was tucking Al into bed I told her we had decided today would be the day for her to return to class. "What? I'm still ugly. I can't go like this!" I tried to explain that yes she could go like "this" and that she was not ugly. I told her everyone knew what she had been through and they would be understanding. She wasn't going for it. She cried. I mean really, really cried, but I thought to myself that we had to go back sometime and today would be the day. As we were praying before bed she prayed hard for something to happen. Healing? She'd take it. Ice storm? bring it on. She didn't want anyone to get hurt on the ice, but she sure did want school to be canceled. She was serious in her prayers and just prayed that everyone would be nice and not even look at her. I couldn't help but smile even though her heart was breaking. I guess at 10 a crusty, peeling, splotchy face is still considered to be the end of the world even though the swelling, redness, and blisters were gone. She just kept saying, "You promised you wouldn't make me go if I felt ugly." She was right. I did say that, but I didn't think it looked that bad anymore. Oh, well. I closed her door as I assured her that I loved her and that we would make it through this.

Fast forward to this morning. Dave gets up before the rest of us. Takes a shower, then gets Blake in the shower and wakes up Al. When he comes into our room to get dressed I start to get up. My first thought was Allison. "Did you get her up?"

"Nope, I decided we couldn't do it."

"I thought she was going today?"

"No, not today."

I just smiled to myself because something had changed. Sometime overnight his heart had softened and he had changed his mind. Al would not be going to class today with her crusty face. She would not have to face her friends looking "ugly". She would be home for another day to work on her skin and try to salvage her "dignity".

Oh, my! The heart of a father! That's all I can think of this morning. Here I was ready to enforce our decision and send her back because technically she feels great. No longer in pain, itching, or "monster" like. Then he steps in and shows great mercy and compassion on his child. He made the final decision this morning and his heart couldn't take the breaking of hers. I love him for that. He heard her cries last night and listened and then made the best decision he could for his daughter. Reminds me of another Father I know. One who listens, who knows whats best for me and yet even still shows such compassion when my heart is breaking. Steps in, changes the circumstances for me and gives me a little more time.

In the grand scheme of her life 5th grade means basically nothing. I hardly remember anything life changing taking place in my 5th grade year. I kind of think if we would have forced her to attend class today that this would have been a life changing day for my Allie. She may have never forgotten it. Not really worth it.

To be honest I'm thrilled with her progress. Last Friday the doctor informed me she would be out of school between 2 and 4 weeks. To see the amount of healing that has already taken place this quickly is really amazing. I really think that with one more day of moisturizers she may be ready to go back tomorrow and not feel quite so "ugly". So were really ahead of the game even if she didn't make it back today. If she only misses 8 days instead of the projected 10-20 then I'd say thats good.

The next thing I'll be asking you to pray for will be patience. For me to put up with all the tears and frustration that will surely come as she attempts to catch up from all those missed days. Its going to be a long, long weekend for our girl.



Its cold outside. In Texas. They are predicting an ice storm. Now I'm not real sure what that means, but I do know that we Texans don't know how to drive on it no matter what "they" might tell you. Surely it won't compare to the ice we've watched fall from a hospital room window in Omaha. Then again, a little bit of ice in Texas is probably a WHOLE lot more dangerous then the whole lot of ice that falls in Nebraska. Needless to say we are staying home tonight. Yep, thats what were doing.

The kids have already found their "spots" and are snugglin under their favorite blankets. I'm waiting on Dave to come home from the office so I have a partner to snuggle with.Then we are going to pop in a movie and wait on "dads famous chicken and rice"(not really famous except to Blake and Allie who decided to name it that many, many years ago) to be ready. I'm so excited cause I'm not cooking it. Yeah me!!! I hate it that he has to come in from the office and cook, but the kids like it better when he fixes it. I gave them a choice between a dish that he cooks and one that I cook. They chose his and I didn't even have to bribe them. Guess that means I'll be cooking tomorrow.

Ash continues to improve. Her coughing has slowed down, she's breathing easier, and is showing more and more interest in playing. All good signs that she's getting well. Al will be attending school tomorrow. Her face is still red, but no longer swollen. The skin is cracked and peeling but I'm afraid it could be that way for a long time. We are drowning her in moisturizer hoping for a big improvement by morning. Either way she's going.

For now Ash has control of the TV. She has no idea that as soon as dad comes home(in the next hour) that Blue will be banished. The kids are tolerating it for now, but I can feel a mutiny is in the works. Sweet baby has no idea its coming.

Hope your having a nice evening at home. Its my favorite place to be! I'm off to find a sweat shirt and get ready to do a whole lot of nothing. Take care. Trish


Standing, Showing, Signing

Look who's up and standing...


and signing to us.

Ashley Kate is starting to feel better and better each day. She is standing. ( Ok, I know she's wearing her leg immobilizers that won't allow her to bend her legs and not stand up, but in my book since its full weight baring on her feet then she's standing). She didn't have a choice since I wedged her between the toy chest(actually the family room chest that has been taken over by her toys) and the couch. Once she stopped her fussing at me I think you can see by the look on her face and the lack of tear stainson her cheeks that she actually did really well. This is the most she has been up on those feet since last fall! She stood and played for over an hour!

The second photo gives you just a peek at her favorite thing to do. She points (and sometimes taps) at things she KNOWS she KNOWS the sign for, but is too lazy to do. Instead she wants to point it out to us and have us sign it for her. It cracks me up. You can't get much lazier than that! Anyway the exciting thing to us is her desire to WANT to know the sign for everything. Even the things we have no idea what the sign is. She is so very smart and each day learns and recognizes new things. Dave and I have lots more learning to do. Currently we have the first 6 episodes of signing time, the 3 books and the flash cards and have those pretty well mastered, but its not enough. As soon as I get a little extra cash I have to get the other episodes for her. This weekend we had a family quiz over the signs in her books. It was really fun to see the kids race to sign each word Dave called out from the book. Its even funnier to see Ashley Kate sit on their laps and tap at each word she wants THEM to sign for her.

The last photo is a sign that as far as I can tell Ash made up. I have no idea what she is signing, but she does. She does this sign over and over again all day long and looks at me like I'm just not getting it. She's right. I'm not getting it. She (like most kids )puts her own little twist on lots of the sign,s but I can pretty much figure them out. Except for this one. I just don't get it.

The best thing about these photos is the way she looks. Can you tell that she's starting to feel better? I think it shows on her face. She smiled and played for a good portion of the day. She was so, so sweet and silly. We enjoyed her so very much. We've missed our silly baby as she's struggled with so many days of not feeling so great lately. She still has a cough and a rattle in her chest, but she is really feeling better. My heart is so blessed that she is surviving this round of pneumonia without being placed on a ventilator. Its the first time in her life that she's kicking it while still breathing all on her own. She still has 5 more days of IV anti biotics that are run every 8 hours and we will continue giving her breathing treatments every 6 for the next two weeks. Then it is my hope that she will be on the mend for a long, long time allowing her to feel better, get stronger, and resume therapy.

Its 11am and both of our girls are still sleeping. Oh, how I would like to join them, but its Monday and that means its laundry day. I mean every day is laundry day but Mondays is the day I commit to doing it all day long. I guess the buzzer on the dryer is calling my name beckoning me to drag my tired self in there to retrieve its contents. I just wanted to share some pics of our pickle with you and let you see how amazing I think she's looking. God is really, really good. Have a great day. Trish

My Girls

I lay in my bed this morning with one on my right and the other on my left. One so tiny and the other not so tiny any more. Their both restless tonight as they work their ways back toward feeling good again. I listen to Ashley Kate breathe with a rattle in her little chest and I listen to Allison Brooke as she scratches and claws her injured skin as it tries to heal. I lay there between them and feel the tears rolling down my cheeks.

Tears. Mostly out of exhaustion. The last 5 nights have been long as we care for Ash and Al. As my tears turned into sobs I found myself crying for different reasons. One of my daughters is growing up. The other is not. Tears fall from my eyes because the one my right is growing up too quickly and her little girl days are slipping out of my grasp, and then they fall because I fear the tiny girl on my left may never grow up and never become anything other than our baby.

My girls. They are so alike in many, many ways. Each with their dark hair and beautiful eyes. The softest hands and feet I've ever felt. The sweetest smiles and the silliest ways they bring laughter into our home. They both have a giggle that comes from deep inside of them and when it comes tumbling out it doesn't take long for my eyes to meet Dave's and then watch as the smile I feel across my face spreads across his. Each one of them have the ability to cause their big brother to stop in his tracks to assist, to help, to pester, but I know that if ever need be to protect them from harm. Yes, my girls are so alike.

Then I remember that my girls are so different. The one on my right can walk, and run, and jump for as long as her heart desires. The one on my left cannot. She has no idea that her heart could desire to do the same. The one my right can talk my ear off until I've forgotten the point she was trying to make. The one on my left never utters a word. The one on my right needs new shoes every other week. The one on my left has worn the same size for more than two years now. Yes, my girls are so different.

But yet I love them the same. My hopes and my desires so similar for each of my girls. My dreams for the one on the left are just as big as they are for the one on my right. My heart hurts for them equally and rejoices for them even more.

Each of their hands have sought out mine underneath the covers this night, and as I held them I cried because I was so grateful to be here under the covers for them to reach out too.

As Allison climbed into my bed around 3 this morning she asked me why I was still awake. I shared with her that I had to be to take care her of sister and her night time meds and to peek in on her and Blake. Before she drifted off to sleep again she said,"Its not good for you to stay awake for us all night long, but I'm glad that you do in case one of us needs you."

Tonight, my girls need me. One grown up and the other really not able to. Both of them needed their mom. I'm so glad that I was here. I'm so glad that I'm their mom. I'm so glad that their my girls.


Look Who's Home

Once again I find my heart full of gratitude for the little yellow house that we like to call home. Ash and I walked through the door, pneumonia and all, about 30 minutes ago and she's already sleeping more peaceful than she has the past two days. I'm not sure who loves this place more, me or her? No matter, we are all here and that is such a good feeling.

Our plan for the night? Order some dinner(I'm too tired to cook), pop in a family movie, and cuddle up next to Dave on the couch(as soon as her IV med is finished running). Allie's face continues to look better and better. We are finally seeing traces of her former self and are encouraged that sometime this next week her face will make its appearance out from underneath all the blisters, redness, and swelling.

It feels so good to be home, to have stayed in Longview, and to know that Ash is getting better.

Hope your weekends are blessed, full of all of those ordinary moments that make life so very extraordinary. Love ya'll. Trish

So Close

We almost have the discharge plans in place. Ash is still recovering from pneumonia, but she is improving. Her chest x-ray looks a little better, her energy level is coming up, and her color is back to normal. She is still coughing a tremendous amount and with all of that coughing comes vomiting, but we all feel as though she is going to beat this thing right here in Longview. You have no idea how good it feels to type that last sentence! It will be the first time EVER for us not to have to transfer via ambulance and med flight out of our local hospital.

The plan was to discharge this morning, but her labs showed a dangerous decline in her potassium. With a level so low the doctor is not comfortable sending her the few blocks to home until it comes back up. We will be giving her some through her g-tube in hopes of seeing it trend back up. With a level as low as hers is this morning you run the risk of irregular heart beat and the possibility of the heart stopping. Trust me when I tell you we don't want to take that risk. We've been there and done that already and its something I hope to never see one of my children endure ever again. Once was too much. If her levels come up by the 4pm labs then we will take her home this evening. If not, then we will remain until they recover.

Once we go home she will be on her IV antibiotic every 8 hours for the next 10 days. In addition to that she will be receiving breathing treatments every 6 until the pneumonia resolves and we are symptom free and cough free.

There are lots of things that need to happen for her today and one of them is a bath! She came in with shiny, clean, yummy smelling hair and this morning I walked in(Dave spent the night with her) and she has the yuckiest, stiffest hair I've ever seen. Its definitely not an Ashley look. So I will be wrestling her as soon as her TPN and antibiotic finish running. She'll hate the whole sponge bath routine, but once its done and she has pretty hair, clean jammies, and big bow she'll thank me for it. Well, maybe not actually thank me, but I can imagine it will make her feel better.

I spent the night at home with Blake and Al. Allie has eyes! That is a huge improvement. She is finally able to see. I can tell its getting better. She's not quite recognizable, but you can see it healing. Yesterday, the doctor shared with me that she could be home with this and out of school for 2-4 weeks! Until I saw her last night I was leaning toward the 4 week timeline, but she may actually make it back after staying home for just one more. I'm hoping so anyway. She's bored and really behind in her assignments. Now that she can see we will be spending the weekend playing as much catch up as she can tolerate. She might prefer to have her eyes swollen shut when she sees all those assignments!

It should be(fingers crossed) a nice quiet weekend at home. Dave and I will be tag teaming through the nights as we work to get Ash well. Allie will be doing lots of homework. Blake will be spending lots of time in the batting cage. That's the plan if all goes well.

Thank you for your prayers. We hope to have her pneumonia free and on the mend very, very soon. Have a great day. Trish


Not Needed

Our admission orders yesterday were to place Ashley Kate on oxygen support to keep her O2 sats above 95%. So far that order has not been activated because it has not been needed. Yeah Ash! For the first time ever we have been able to avoid what we all that was the inevitable. Her respiratory status remained stable all through the night and still this morning.

Her chest x-ray shows the pneumonia has settled in behind her heart in her left lung. We are currently treating her with a broad spectrum anti-biotic for the pneumonia and she was already on an anti-viral(thanks Shari, I accidentally typed anti-fungal) for treatment of the CMV she got last fall. So the RSV is covered as well. She actually looks really good. She's tired and breathing a little heavy from the weight of the pneumonia, but as long as she remains stable and doesn't decline today then we may get to go home tomorrow and continue IV treatment from there. That is our hope. We will of course be monitoring her symptoms and staying on top of her O2 sats, but as long as she holds her own we may be able to ride this out at home.

All other tests have come back negative. That is a huge blessing. To know what we are battling is such a huge piece in overcoming this illness.

Thank you for praying for our Ashley. She needs them. I truly believe the Father is hearing the many prayers prayed over her and that it speaks to His heart. Again I say thank you for being here and for caring.


Guess Where we are?

Ok, you don't have to. Yep, we're in the hospital with pneumonia and RSV. Yeah us!

Originally we thought we were going to give her a blood transfusion, but that has now changed. We're not going to. We are running some IV antibiotics and keeping a close eye on her O2 sats. I took her in this afternoon because her sats were running around 88 at home. In the doctor's office they were still at 88-89. Now that we have been admitted they are 94-96. Go figure. Anyway, I'm glad to know what we are dealing with. Anytime she gets a common cold it has a real good chance of turning into pneumonia. I had hoped it wouldn't, but it did.

So we are being our optimistic selves, living in Dave's land of daisies and rainbows and thinking this is the time we will just have a little pneumonia, a common cold, and get well and be back home in a couple days. Right? Surely this is the time.

Ash is SOOOOOO suppressed we knew she could pick up anything at anytime. Advice from transplant was to live life. It is what it is. Keep a mask on her(which we do), but you can't keep her from being suppressed. If there is a germ lurking about she has a real good chance of picking it up and what is nothing for you and me can be a big something for her.

I had to leave Allie home alone for a few hours today while I took Ash to the doctor and then on to the hospital, but she was so grown up about it. It made me crazy, but to see how well she handled the situation blessed me more than she will ever know. I hate that she is feeling so yucky, but so proud that she has grown up to be so unselfish. Dave's mom came to sit with her for a couple of hours this afternoon, but she leaves town tomorrow. Not sure what I'm gonna do then, but I'm sure I'll figure out something. She may get packed up to go into the office with Dave. I know she'll protest but we can sneak her in the back door and not let anyone see her.

Anyway, Dave is coming up in a few minutes and I'm going home to pack up meds, pumps, TPN, formula, etc. etc. I also need to put Blake's room back together before he comes home tonight(remember I started tearing up closets this morning? You can't even walk into the house!) Then Dave and I will trade places and he will go home with the kids and get Blake to school in the morning. Life is never boring.

Your prayers for Ashley Kate would be greatly appreciated. Our hope is to stay put. Not leave Longview and kick this pneumonia in just a few days. Lets hope it goes that way. Take care guys. Trish

Its Just Not a Big Deal

As Allie and I sat and sorted through her stack of missed work for this week in 5th grade I could see the slits of her eyes begin to fill with tears. She barely has the ability to open her eyes. What tiny portion that was opened was filled with worry. "I just really don't feel good and I can't see." I knew she didn't feel well, so I offered to read everything for her. Then I realized she can't even see well enough to write so I thought I would offer to write everything for her too. As we sat and tried to decide where to begin and my puffy, blistered, fevered 5th grader began to fall apart I made an executive decision(you get to do that when your a mom). Its NOT A BIG DEAL. Its just not. 5th grade will come and 5th grade will go. In the grand scheme of things keeping up with her class each day that she is missing won't matter to anyone. It won't change the world. It won't be an event that forever changes her life. She is an excellent student. This is just not a big deal. So I told her we would wait until her fever breaks, her eyes can at least open up again, and maybe some of the worst blisters have begun to heal. We will eventually catch up. The work will get done, just not on time and its going to be okay.

I've learned a lot the past few years. One of the biggest lessons I've learned is to let the small issues go. There is no time for stress and worry during the times that Ashley Kate and I get to be home. I want our home to be a place where my kids feel no pressure from the outside world. A place where they know they will be uplifted and supported. A place where they can breathe deeply and relax in the knowledge that some things aren't worth the tears or the worry. At the same time I'm teaching them about things that do matter. People. People matter. Kindness. The things you do to serve others matter. Family. Its knowing that the people in this home will always be there for you no matter what you've done, where you've found yourself, or what has happened. Those lessons are far more important than any history lesson I've found, math equation I learned to solve, or word I can spell. We also are learning to do our very best at whatever we do. Not to give it a half hearted effort. Its not acceptable when your representing God to this world, our family to this world, or yourself to this world. So when she can see again, we will buckle down together and pull out that stack of work that is only going to grow taller by the day and do our best to complete it. Then I will tell her to hand it in, walk away, and don't worry one bit about it being late. Its just not a big deal.

In the meantime our beautiful girl is hiding her face under cold compresses for about 20 hours out of each 24. She is miserable. I've never seen her in this condition. We are doing everything you can possibly do to make it tolerable, but even those things don't seem to be helping her. We get a few laughs out of her each evening when the guys come home because she just can't help but giggle at the crazy things they have to say about her face, but other than that she is resting for the majority of the day and crying during the times she is awake. Its pretty traumatic when your only 10 and your face has literally disappeared. She's right when she says she can't even find herself in the mirror. We can't find her either.

As for the littlest pickle, she spent another night sleeping sitting up. Her cough didn't seem to happen as often last night and she remains fever free. She did cough so hard a few times that she began vomiting which is precisely why she is strapped sitting up all night long. With her history of aspiration and the memory of almost losing her exactly one year ago because of something very similar to what she is doing now we are taking no chances. The new plan from our transplant team was to increase her level of allowed output and allowing her amount of needed IV fluids to decrease in hopes to straighten out her lab work. We are all banking on the assumption that perhaps she was receiving too much fluid causing her blood work to look watered down. That may also explain the trouble she is having breathing and perhaps be an answer as to why her face and neck are having trouble draining. She could be fluid overloaded. So we are hoping this is what it is and that when we repeat labs tomorrow morning instead of on Monday that things will look a little better. If not then we will be going in somewhere for a blood transfusion, an albumin transfusion, a chest x-ray and perhaps some more vascular studies. My hope for her today is a little more energy, less of a cough, and clear breath sounds. If things wanted to go my way then thats what I would want to happen.

The good news about being in lock down with these girls of mine is all the time I get to spend staring at them and being grateful to be their mom. Also I'm getting a lot of long overdue cleaning done cause I can't leave the house. Closets, dressers, bathrooms, cabinets. All getting organized again. Thats good news because if it doesn't have a place in our house then I tend to get rid of it whether we need it or not. This house is too little to have things out of place. At this time I sure would welcome all of that therapy equipment to end back up in the family room though. Our Ashley hasn't had the strength or energy to touch any of it since last fall. Outside of being strapped into her stander on a few of her better days she hasn't done anything with any of it. Baby steps, right? Thats what I'm trying to convince myself of. She's home. She's breathing. Those things are important. The rest will just have to wait.

Well, I've rambled long enough this morning. I could probably find more to ramble about, but I realize I'm just wasting time to keep from having to switch the laundry again. That's not going to accomplish anything. Hope you guys are having a blessed week. Thanks so much for checking on us. Take care. Trish



That pretty much describes me this afternoon. A bundle of nerves.

I sit and watch Ash breathe and wonder just what is going on inside of her. No fever. Thank you God for that. A really bad cough. Its moved into her chest. I listen to her breath sounds and can hear air moving through the lungs. A little crackly, but still moving. She's grunting. Not something I like to hear her doing. Her heart rate is elevated and tacky, but her oxygen sats are ok. Not perfect, but well above what we would consider needing oxygen support for. So taking all of that into account I wonder if its a normal chest cold or something more.

Her lab work looks suspicious. All of her CBC counts are low except for her monophils which are more than double what they should be. Everything points toward some kind of infection, except the fact that she has no fever. Speaking with Omaha this morning as to wether or not her blood was perhaps diluted therefore not giving us accurate numbers. Her hemoglobin is pretty low and if the labs are indeed correct then she needs a transfusion. As always her albumin is shot. Only 1.3. Meaning she will also be needing albumin any day. I'm waiting on word from Omaha and our local doctor. Omaha should be giving us direction pretty soon. They wanted to speak to the surgeon to find out if he wanted her labs repeated today. We were promised a call back from our local doctor by noon, but still have heard nothing. I think we should get another chest x-ray. Last weeks was clear, but her cough has definitely changed.

Ash just isn't herself. Hasn't been for weeks and weeks. Bouncing back hasn't happened. This whole chest cold is just complicating matters for her. Our hope is to avoid pnuemonia which would land her in the hospital. If soemthing can be given, or something can be done Dave and are hoping to get it going as soon as possible before things go south. If nothing can help but time then we are happy to wait this out. Just nervous about the in between time.

I'm still waiting and wondering if those days of stability will return. If they don't then I'm going to have to figure out some way to handle this bundle of nerves that seems to be constantly knotting up inside of me.

2 years post transplant and still battling. Thank you God for her life. As fragile as it is, I thank you for it. She's an amazing little one and I'm so glad she's with us. Her body may never regain its strength, but the spirit you placed inside of her is stronger than any I've ever known. She snuggles into my chest and I thank you for her ability to breathe. Help me to breathe. Breathe deeply and know You are here. Please protect her. Get her through this. Thank you for allowing us to be home. Thank you, thank you, thank you.

Camping Out

Not at the lake this time but in the living room between our two girls.

One is on the right and one on the left. Both miserable. With me in the middle. I can't think of anywhere else I'd rather be at this moment than here in our home with our girls. (Even if the crying is enough to make you crazy!)

Actually, Allison slept better than I had expected her to based on the miserable day she had yesterday. She did get up at least 3 times which is unheard of for her. She sleeps like a rock and never gets up until we drag her out of bed each morning for school. Anyway, I was surprised that she slept as much as she did with her face hurting as much as it is.

Ashley Kate earned the privelage of sleeping sitting up in a car seat for the night. She tends to vomit when she has a cough and I couldn't take another sleepless night of worrying about aspiration from all of this. So we buckled her in for the night and she waved bye-bye to me each time I tended to her thinking we were really taking her somewhere. Silly girl, the only place I intended her to go was to sleep. She too did better than expected. I think the whole sitting up thing was a brilliant idea(it was her dads). Her drainage didn't bother her near as much as it had and she just might find herself buckled in for all of her naps today too.

So today's plan is to stay camped out between my girls and hopefully see them start to improve. Nothing else going on around here. Just a little poison ivy(its not contagious so Ashley Kate is safe) and a pretty yucky chest cold. Oh, yeah all the laundry that I failed to finish yesterday. Other than that were planning on a quiet day. You know how that goes.

Have a great day and take care. Trish


A great kid

He really is. If you don't know him, I really wish you could. He's just a great kid. I don't say that because he's mine. It has nothing to do with me. Its just who he is. God created an amazing person the day He created Blake. I kid you not. I appreciate my son for many, many reasons, but mostly just because of who he is.

He spent his afternoon and evening tending to his sisters. I watched him give selflessly, help whole heartedly, and feel great empathy for what the two of them are going through. He's always been this way. When they hurt he does all he can to try and make things better for them. Its a million little things. Bringing them drinks before they can ask, checking on them to see if there is anything he can do for them, playing games with them, reading books to them, etc., etc. the list goes on and on. I love this child. I love him so much.

Tonight as I tucked him into bed I shared with him how very much I appreciate him. Who he is. The big brother he is. I told him what an amazing person I believe he is and how blessed we are to have him. He's not only our son, he's our friend. That is such a blessing.

Blake is the whole package. He really is. Athletic, intelligent, kind hearted, good looking, humble, thoughtful, funny, dedicated, loyal, driven. I could talk about his many strengths for days. When I look at him I see his dad. Their cut from the same cloth. So much alike.

Today I had the opportunity to appreciate him for who he is and all that he does. What a gift he is to our family. What a blessing he is to his sisters. What a blessing he is to me. I love him. So very, very much.

It only gets better...

...why do I keep this blog? Well, other than the fact that your prayers have played a huge role in our tiny pickles life and I've grown kind of attached to most of you its because it always helps to know that somewhere in this world somebody else's life has more nonsense in it than yours. Its all about perspective here. So...

...I heard a car outside in our drive way about an hour ago and since I had warned you guys that this was going to be our "ugly" day of not answering the door I couldn't imagine who it would be. Then the door opened and the first person who walked through the door was someone I didn't recognize. Hmmmm. Then followed Blake and Grandma leaving me to assume that the person who was now crumpled up on my lap of freshly folded blankets and hiding under a towel would be none other than my beautiful Allison Brooke. COVERED IN POISON IVY! ON HER FACE! PRIMARILY HER EYES!

Oh my goodness!!! Her face is not recognizable. Her eyes have swollen to heights that I thought for sure only Ashley Kates could achieve. I kid you not, I could not make this stuff up. (She allowed me to take pictures but I had to swear not to show ANYONE and that includes all of you).

So just in case you were wondering, poison ivy is never dormant. Even if the vine has no leaves or foilage and even if it is shriveled up and camouflaged in the same shade as the tree trunk it has woven itself around. Its still very active and very much alive. Yep. It is. One of our Allie's many talents is tree climbing and it finally got the best of her. So as I type she is crying her swollen eyes out in there on her bed and wondering if her face will ever return and if the itching will ever stop. She is announcing that she will never be returning to school. We just read that she could look this way for up to 3 weeks( Just wait till the blisters show up. I don't have the heart to tell her just yet). Thats 21 days that she has vowed not to return to class(unless her face returns). Wonder how were gonna pull this one off?

I really do love my life. Its kind of fun and exciting and seldom ever boring. On top of all that I now have two daughters who possess the talent of morphing into creatures that you've never ever imagined. Now thats impressive!

Hope your day is going a little better than ours. I'm burning a few calories running from room to room and Al just asked me if I could pick her up a bell from the store. Honestly, I don't make this stuff up! Trish

Colds,Congestion, Crud

Yep, that pretty much sums it up. And since that's what our three year old is into these days then we will be sticking close to home today and not even bothering to get ourselves dressed(also because the kids are out of school and we don't have to). I have no idea how long she's gonna have this crud(and I have failed to mention that she's had it due to all the other nonsense I mention that is going in her body like facial swelling(which was great over the weekend, but back this morning) and dumping syndrome(which doesn't seem to want to slow down) so see why I didn't add this cold monster into the mix. Anyway, were staying home and being ugly today cause we need to and we can.

So its almost the lunch hour and Dave is due home soon and when he left this morning he was looking pretty cute and I was conscious enough to notice that fact and wish that I had a little more energy to at least put my clothes on, but since I don't I'll just ask him to keep his eyes closed during lunch(which he probably won't mind since he listened to Ash cough all night long on the monitor and to me getting up and down every 1/2 hour to check on her). This my friends is what 16 years of marriage will earn you. The right to be ugly and stay ugly all day long since you don't have to leave the house and a husband who won't even blink an eye at the whole thing cause he's seen you at your best and at your worst. I just love this whole married thing.

The kids are at the pond and its just Ash and I today. We're just gonna fold some laundry, make her dad some lunch, and watch Signing Time all day long. Yep, that's the plan. If you were planning to stop and surprise us with a little visit then I thought it would be nice of me to warn you that we won't be opening the door because of this whole "ugly" thing were doing today. Love you guys. Have a blessed day. Trish

P.S. Just thought I'd add that Ashley Kate is literally trying to pull her bottom lip off this morning. Best I can figure is that since the coughing is coming from her mouth she is holding her lips responsible and since the bottom one is easier to pull off than the top she's gonna start there. The not so funny thing about this is that she keeps signing to me that it hurts when she pulls on it and that it makes her cry. Honestly, I said this is not funny, but I can't keep from laughing cause it kind of is. Oh my goodness I love this baby!

The Sweetest Sound

I can still hear it if I close my eyes and concentrate hard enough. It truly was the sweetest sound in all my world. I sit here this morning in the early hours and find myself stunned that it has been this long. 2 years. 2 long years since I heard it last. Can you even believe that? I find it really, really hard to believe and I've lived it. Oh well, I miss it. More than words can describe. I wonder if I'll ever hear her say it again? or say anything again? If I had only known that afternoon that I would have to go years without hearing it again I would have recorded every second of that day leading up to those frightening hours.

Last week, Jan. 15th, marked two years since the day that our Ashley Kate said these words for the last time, "My momma". It was her favorite phrase. I remember she used to chant it all night long until sleep got the best of her. I lay in a room across from her with smiles across my face each night listening to the sweetest voice I'd ever heard. I miss it.

That afternoon she sat in my lap and as I read books to her she would interrupt by looking up at me and saying, "My momma" until her breathing became labored and her voice too weak to hear. As we rocked something inside of her began to change and our world has never been the same. It snuck up on all of us and tried to steal the best part of us. Thank God she survived that day. Her voice did not, but she did.

This morning in these early hours I'm grateful that all I'm missing is her voice and not my sweet baby. She sleeps silently in the other room. Her world is now silent, but she is still in it and I am grateful.

I miss it, but praise God I'm not having to miss her.


They didn't give us a book...

...the day we brought them home. I kind of thought they might, but they never did. We did it 3 times, and all 3 times they allowed us to pack up those babies and never once gave us a book about what we were supposed to do with them once we got home. Oh well, through the years we've just kind of made it up as we went along and so far so good. Of course there were days(and there still are) when we looked at each other and just kind of shrugged our shoulders because we were stumped, but then there were(and still are) those days when we look at each other and just smile because we can't imagine it getting much better. I think the key to it all is time. It doesn't really take much else. Just lots and lots of time. At least that's what works best for us as we learn to parent these amazing people God handed to us. The more time we invest in them, the better the result.

We really enjoyed our weekend. Just hanging out and having some fun with our 3 favorite kids in the world. I wish I could put into words how good it feels to hear your 13 year old say, "Hey, I love all of you guys in this room" or to hear your 11 year old say to your 3 year old, "I'm sorry your tummy hurts" then watch her kiss her tiny fingers that she signed with and say, "I hope that helps it get better." Or to hear those big kids laugh till they cried as they watched their dad have to go in after the canoe that had tipped over and was floating away. What a memory! All I know is the 3 of them came back from the lake wet, wet, wet(each in varying degrees with Dave being wet up to his armpits!) and we spent the rest of the evening drying out their clothes and shoes by the campfire. As the clothes were drying the kids made smores and even had a critter stop by and join them. Who knew that raccoons liked smores? I sure didn't.

Ash's favorite parts of the weekend were by far the campfire and the canoe ride. Two more experiences to put down in her book. I love watching her eyes as she sees and does new things. Its an amazing place to be.

I love my kids, I love my husband, I love my life. I really, really do. Hope your weekends were blessed. Enjoy the slide show. Take care. Trish


Its back

It was gone for three whole days. Ironically? the three worst days of Ash's swelling this week. Is that coincidence or just God giving me a little break by only having one pressing issue at a time and also giving Ash's body a break by only having one issue to battle at a time? I'll just say its God cause I kinda think it works that way. The way that I know He cares how much is on our plates at one time so He kind of puts something else on the back burner even if only for 3 days. Anyway, our little friend "dumping" is back and showing himself in a mighty way. Along with the swelling and dumping she's been battling comes a lot of hours and days of not feeling very good. That's the way we live at this time and seems to be the way we have lived the vast majority of her days since Oct. 5 of last year.

I'm trying not to get discouraged about it all, but to be honest I can't help but wonder if this is as good as its ever going to get. I mean, we have moments or possibly an hour here or there where she is back to being her "normal" Ashley self, but all of the in between moments are making me crazy with concern for our pickle. I so desperately want her to have happy, feeling good, growing, moving, learning kind of days again. Lots and lots and lots of them in a row. Will she ever be where she was last year again? I just don't know if she will. I honestly don't.

Last night we walked in from Blake's basketball game to find a happy, smiley, playing Ashley Kate full of giggles and signs and nonsense. It was wonderful and refreshing. I was so happy for her. We all enjoyed listening to her and playing with her. I was so encouraged. Then this morning we find ourselves battling to feel good once again. Its just so discouraging to see her be sick over and over again.

My mind is starting to struggle with a lot right now. We have so much to do. So much to learn. So much to accomplish. Will we ever be able to teach her what she needs to know? Will I ever figure out how to teach her even the basics of life? Dave and I have lots and lots of conversations about where and how we are going to do all of these things. Its a frustrating maze I find us in. Even if she doesn't walk, or talk, or eat she still has a very smart mind that wants to learn and grow. How do I learn how to teach our little girl to be all that she has the ability to be? I'm lost. Totally overwhelmed and lost in a world that I never imagined she and I would be trapped in. But we are in that world and I have to find and figure out what resources we have to make it the best possible world for her. Still in order to do all of these things she has to be well, and she's not. At this time she is struggling to feel good enough to even be out of her bed. If we can't get well enough to stay up then how are we to learn to read? or write? or move? or communicate? or function? Like I said I'm just so lost.

I feel like I'm drowning in my own thoughts this morning. I just need this child to feel good again so that she can start living again.

P.S. We are leaving town this afternoon and won't be back until Sunday evening. Just didn't want you to worry when you don't hear from us. Talk to you sometime Sunday or Monday. Enjoy your weekend. Trish



If you are reading this then I am asking for your help. Our friends are in desperate need of a few minutes of your time. Please, please help us. I'm not going to re-write all the details because I could not do it as well as Emerson's mom already has. So please go to their site as soon as you can and read the last few posts. Emerson has overcome more than any single person I have ever heard of in my entire life and she does not deserve to be denied a transplant because of an insurance nightmare from the state of Colorado.

Just imagine if it were your sweet baby. If it were your daughter in that crib in Nebraska waiting to be listed for her second transplant. Imagine if you had been living in a hospital watching your baby fight to survive every single day for the past year. Just close your eyes and imagine. I don't wish it for any of you. Its the hardest thing we've ever done and I know its the hardest thing Emerson and her family have ever done.

Your help for our friend would be more than appreciated. We have to make a difference. We don't have a choice.

Thank you for loving us, our Ashley, and our transplant friends. This life we live would be impossible without your support. I thank you from the bottom of my heart. Trish

She has eyes that open

For the first day since last Friday Ashley Kate woke up with the use of both of her eyes. Yeah! They are a little bruised from the all the swelling and don't look very sparkly, but she woke up able to see out from underneath both of her eyelids. The left one is still heavier than the right, but its open. That's progress.

She continues to lean her head to the right side and works her neck by rubbing her head back and forth across her shoulder. That tells me two things. One is that she is still having trouble draining the fluid and two is that she has figured out her own way of getting some relief.

She doesn't look great, but she definitely looks better than she has in days. The left side of her neck still has a heavy pocket of swelling underneath her chin and jaw area, but she is less puffy all the way around. I think its getting better.

She is up and dressed and out of the nursery this morning. That too is progress. The last few days I haven't been able to get her up until after 11am. She is in the middle of the family room and has a perimeter of toys surrounding her. We are tying to encourage her to get moving again and so I have placed absolutely nothing in her reach. She has to move to get to a book, a puzzle, or a toy. So far she hasn't budged. She just keeps signing to me that she want to watch a signing time DVD. That cracks me up. She tells me she's sad and that she's crying because I haven't put one in for her yet. I wish you could see her sign that she's crying. It is so, so sweet. I can't help but giggle every time she signs it when there aren't even any tears. I guess that means she's crying on the inside. Oh wait, now she is signing that she is "waiting, waiting, waiting". This girl is too funny! I just love her so much.

So without proof of a clot there isn't much that can be done. It could just be that she is struggling to drain because of all of the scarred veins, but the sudden way it came on is the indicator to me that there is or was some type of a blockage. Anyway, if she gets better thats all I'm concerned with. When this line was placed the decision was made to put Ash on 1/2 of an aspirin every other day to help prevent clotting around this line. Then the next day we were air flighted out to Omaha and things took a different turn. Honestly, I think that plan was forgotten about and so we are bringing it up once again. Aspirin is safer than coumidin and doesn't require the bi-weekly blood draws to monitor it. Its not good on her kidneys which already struggle from her required Prograf doses, but if it keeps her blood thin enough to flow past the line then it may be worth it for the remainder of the time we need this line. I don't know. Its just something Dave and I remembered them deciding back in October, but it was never actually started.

Today her feeds will increase to 55mls an hour and her TPN will go down a little giving her a 10 hour window each day. That too is progress. Its been a rough week, but I'll take any progress in the right direction no matter how small. Guess I should get going and begin that DVD. It's not really considered to be "vegging out" if she's learning to communicate. Right? I hope so anyway. Take care guys. Trish


The Sweetest Thing

I came in this evening from dropping Blake and his friend off at youth group and stumbled upon the sweetest thing. In the recliner sat a daddy completely taken with one of the most beautiful little girls I've ever laid eyes on. Enormous pink bow, jammies, and lacey socks, there she sat snuggled into his lap. Her rosy cheeks just glowing. I stood and stared for a moment and could think of nothing more in this life that could be sweeter than what I was seeing.

Then it happened. Something even sweeter. After Dave left to pick up the boys from youth tonight I sat Ashley Kate and that enormous bow in her crib while I went to ready her things for bed and when I stepped back into the nursery my beautiful baby girl was fast asleep. Sitting up in the middle of her crib where I had left her. Rosy cheeks, pouty lips, swollen eyes and all. There she sat with her little hands folded in her lap. I laid that sweet girl down on her pillow and she immediately went into "classic Ashley" pose and placed her hands behind her head as she slept. I couldn't help but stare at her incredible beauty. Even as swollen as she is tonight I can still see her. I see that little girl who has through it all maintained her tiny features. Her long eye lashes, tiny nose, pouty lips and rosy cheeks. She looked like a baby doll. A cabbage patch doll to be exact with those huge cheeks and neck. I didn't have the heart to take her pony tail down and remove that hair bow. She was sleeping so well I didn't dare disturb her. We've had some really, really long nights lately with very little rest for her or myself. I just let her sleep the way she was. Thankfully I had already clothed her in her kitty cat nightgown before I left to get her things from the kitchen. Now each time I go into to check on her I smile at the image of her sleeping with that giant hair bow in place. Its shade of pink matches her cheeks tonight. There a little flushed.

The swelling remains. Today was the worst since it showed itself last Friday. Her little face is so swollen that her mask left imprints on her cheeks today. That's pretty puffy! By bedtime tonight her left eye had opened up to where she could use it although the eyelid was still heavy. I think I saw some improvement in her neck also. Her left side is more swollen than her right and its usually that way. Last year the blood clot was on the left side in her interior jugular vein. Her right IJ is already closed and had poor blood flow through it because of a central line that was placed in December of 07(remember that giant purple one?). It was too big and we lost access to that vein when it was pulled. So her blood return from her head and neck is already compromised even without a new clot forming. Why do I think she has a clot? Because of the way her swelling came on and the way it is reacting. In the early mornings after laying down all night long her eyes are so swollen they barely open. The amount of swelling is much worse in the mornings and then throughout the day as she is up it does a little draining and starts to improve. Its not just us who notice the swollen shape of her face and neck. Several people have commented on it the last couple of days. Its obvious when you look at her that somethings not quite right. Anyway, because of the way she is draining during different times of the day I know this is a blood flow issue and not the "moon face" shape that prednisone causes. Although she does have some of that from the drug, this is different.

The ultra sound was pretty inconclusive. The areas that they could see showed no clotting, but there were areas that they could not read because "baby crying". Remember? I won't say much more about disagreeing with this ultrasound because I just don't need to, but I will tell you that I knew it wasn't being done right. Why don't we just take her into the hospital? Its not that easy. You can't convince them that we know what we are talking about when they think they know what they are seeing. Its just not that easy. We can't make someone admit her and treat a condition we know she is struggling with when they have never seen her and think this could be normal for her. Anyway, its just where we are at this point. We just have to find a local team to care for Ash. Tomorrow I will make some more phone calls and try and get someone to treat this. Perhaps it will just resolve on its own. Perhaps it is just poor drainage from scar tissue and lack of access. Then again maybe it won't. Its the maybe it won't that is concerning to us. Last year she was on coumidin for 6 months while being treated for SVC. I'll be talking with the surgeon's office who placed this line for us in October tomorrow. I'm hoping they can help.

Outside of the swelling she looks pretty good. She is frustrated by the lack of ability to use her eyes when they can't open, but once they begin to she plays and looks at books all day. Her stool output has come down the last two days and we are so grateful. We have been able to advance her feedings twice this week and it looks as though we might again tomorrow. Thats all positive news. As soon as we can get her back to tolerating full feeds the sooner we can get this line pulled out and perhaps all the clot issues will be leave with it. She hasn't needed any IV replacements since Monday and that too is encouraging.

So all in all, we are watching her closely. Trying to figure out treatment for this latest issue. Enjoying our days here with her at home. Being thankful for this sweet baby that God has blessed us with. Attempting to settle back into normal life with some type of routine, and concentrating on just being together again as a family. I feel so blessed to be home tonight. All three kids sound asleep at this hour and me getting really close to doing that exact same thing. God continues to bless us. So undeserving of all that we have been given, but very, very thankful for these days. Good night my friends. Trish

You don't have to see it... believe it. We know, without a doubt, without even seeing the results, or hearing back from our doctor(which is proving to be more than frustrating) that Ashley Kate's SVC syndrome is back. Its MORE than obvious that her face and neck have lost the ability or have lost much of the ability to drain blood back out of them. Last night her eyes swelled almost completely shut. This morning the left one was. Its 2pm and she can see from her right eye, but the left eye has only a small slit open. She is leaning her head to the right side(where the pic line is) and doing her best to help it drain on her own. You can watch her actively working on trying to get some relief, some of the pressure to leave.

Problem is? The ultrasound done here in town yesterday was probably the worst one I have ever seen done on Ash. No disrespect intended, its just the truth. The results may come back showing us nothing even though we know there is something there. Through the entire, very long, ordeal the tech kept saying over and over again, "Baby crying. Messing up the screen." O.k., lets discuss this. She's going to cry. Thats a given. When you are holding her head to one side, pinning her arms and legs down, and pressing a probe into her swollen neck and on her chest, you can pretty much count on the fact that a 3 year old who doesn't trust you because of her life experience in this very situation is going to cry. Our pediatrician tried to convince me this was "moon face" caused by her prednisone. Ummmm, nope its not. Again no disrespect. She's been back on prednison since October 5th and it did not just cause moon face to appear on Jan. 12. I know her well. I know what her face looks like on prednisone and I know what her face does when she has a blood clot blocking the flow of blood from her face and neck. I just know.

Currently we are waiting on her local doctor's diagnosis. We've already called and again have been promised a call back. UGHHH!!! The last two days our return phone calls have come after 6pm. As if this is not an important or pressing situation. If he does nothing then its off to Shreveport we will go. If they can get us into clinic. It may be tomorrow.

All I know is that blood clots, although common in children like Ash, are dangerous. They just are. Plain and simple.

As soon as we know anything I'll let you guys know. Thanks for caring. These are the days that I wish our transplant center was just around the corner instead of across the country. They would have already started her on something to thin the blood so that the clot did not get bigger and bigger.



Ashley Kate's face took on a new, but unfortunately familiar look over the weekend. I had hoped it was temporary, but it lingers still and along with the lack of blood flow from her PIC line we are suspicious. The feeling is that she has a blood clot. Somewhere. Again. The question is this: Is it stationary and attached to the inside wall of the vessel? or is it traveling? We have to take a closer look.

Either way its not good news for Ash. Blood clots are dangerous. If it is stationary we will probably start her back on blood thinners so that it does not grow as the blood trys to flow past it(usually its coumidin and that drug in itself has a whole list of issues associated with it). If it has broken free and traveling(which may explain the temporary blockage of her line) then I have no idea what we do with it. I just know that blood clots in the major vessels are a dangerous complications of central lines. I also know that currently we have no choice but to have a central line of some type. Either a PIC or a broviac. The placement of those lines is getting harder and harder the older she gets because of the frequent access to her veins. Her access is becoming more and more limited making it more and more difficult because of the thick scarring in her veins.

We are planning a visit to her local doctor today and he is planning a vascular ultrasound for her at some point this afternoon to see if we can locate a culprit. It is my hope that there is not one, but I am prepared to be told that there is. Our goal is to do this local. If management can't be done local then Shreveport is my next goal.

Ash is currently on feeds of 50ml an hour with a goal of 80 being the ticket to getting her off TPN support and line free. We are a long way from 80 with only advancing 5ml at a time if her stool output meets the required guidelines. Thankfully yesterday it did(for the first time in several, several days) and we got to advance to 50 this morning. This recovery is proving to be very, very slow with lots of ups and downs.

So, I'm off to bathe a very puffy pickle, and then take my puffy pickle to the pediatrician. From there who knows what our day will hold? Talk to you soon. Trish


So Precious

There is nothing more precious in all this world than the words of a father crying out to the Father on behalf of his child. Each time Dave prays I get lost in his words, his tone, his pleas. What a gift it is to have a father who prays for you. I've got one, and my kids have one. We are surely blessed.

Dave ran home to sit across the table from me for a few minutes over his lunch break. It was a rushed break because of staff meetings, errands, and a trip to the lab, but we took advantage of the time together anyway. Before we began to eat, he began to pray. Instead of just thanking the Father for our blessings and the food that sat before us he took the opportunity to make a plea for Ashley Kate and her line issues. How beautiful to hear his words. How precious to my heart to know that on his mind throughout his busy day is our little one.

Not more than 30 minutes ago, I decided to work on her line again. I didn't expect anything to change. I had worked on it for a length of time last night and again early this morning. We were still waiting(and remain waiting) for a return call from the doctor's office about the TPA and so I thought I'd try it one more time. Guess what? A drop of blood came back in the syringe. I thought my eyes were playing on tricks on me so I flushed with a new syringe and drew back again. Then it happened. The flow started. I was able to draw back 3ccs of waste and another 4ccs of blood. Just enough to run the tests that had to be sent today in order to get her TPN made this week. I wasn't able to draw for her drug levels(the ones her doctors in Omaha really want) because they have to be drawn at 7am, but I did get blood. Out of that locked up line it came. Go God!!!

I was so excited. I called Dave to share with him and this is what he had to say, "He's in the prayer answering buisiness." Just as matter of fact as he could be. He was thrilled, but not surprised that God answered this prayer with blood. Its what we needed and He gave it sparing Ashley Kate any pain that today would hold for her tiny body. I feel so blessed. So very blessed.

Its just like our Father to show up like that isn't it. Not really expected, but there all along. Its a Father's job to love his kids, to want to make life easier on them, and to desire to bless them. Thats what Dave does for our kids, and today I was reminded by just a few drops of blood that thats exactly what my Father in heaven does for us too. He loves Ashley Kate and He didn't have to spare her the pain of many needle sticks and pokes today, but He did. He loves me and He didn't have to spare me the pain of paying for my own sins on a cross meant for me, but He did. It feels good to be reminded of that every now and again. God loves us. He really and truly does.

We still believe her line requires a little work to keep babying it along until she can be weaned off of her TPN support(this is the same PIC line that was placed in early October. We are hoping to hold on to it until she can be line free to avoid another surgery). TPA(the clot buster) is still necessary. I'm not sure where or how its going to be done, but for today, for this moment, she's avoided the pain of a lab draw and I am so, so grateful.

To all of those who prayed over her line today I say thank you from the bottom of my heart. Those needle sticks are so hard on her and so hard on me. Her tiny veins are shot from the frequent access her life has required and finding one that will hold up to a needle isn't pretty for anyone whose involved. Today we are blessed. Take care. Trish

What now?

The line refuses to give any blood. It flushes just fine. For that I'm thankful. At least I can administer TPN and fluids. As far as her labs are concerned this morning? I'm not sure we can pull them off.

Its a new month and that means she has to be registered in advance before the hospital's lab will do anything with her blood. Dave usually stops in while taking the kids to school, gets the paper work going, then returns home to pick up her blood, then drops it off back at the lab before going in to the office. All this means that Ash stays home, comfortable in her bed, with no "owies" because I drew the blood from her line. Not happening today. As far her drug levels go, they can't be drawn today. Its very time specific and by the time we can get the paperwork done, even if they get blood drawn from one of her veins it will be too late to check drug levels. That has to wait for tomorrow or Wednesday. Her CBC, and CMP can be drawn at anytime so I imagine that she will be getting poked, perhaps many times today, at some point. Those lab results have to be turned in today no matter what so her TPN orders can be written and sent to the pharmacy. No choice on that matter. I need to have something called TPA sent into the line to try and get it to open enough to give back blood, but where is that going to be done? I'm not sure. Last time we did it here in our local ER, but trust me when I tell you it was almost impossible getting them to do it for us. The docors were more than willing, but honestly there was not EVEN one nurse on the pediatric floor,( and almost the entire hospital) that new how to do it or was willing to read the instructions and give it a try(there is really nothing to it. We've had it done to her multiple, multiple times). It was so frustrating. Dave and couldn't believe it. Finally,down in the ER, there was a male nurse who had just come back from a seminar on central lines and he had been taught how to administer it. Anyway, it worked and it saved us a surgery and we were so grateful. So, I guess we will attempt to have it done locally. If they can't then I will attempt to get her into Shreveport today. If none of this works, then she will have to have a new placed since she is still requiring 16 hours of TPN support a day.

Our day won't be playing out the way I had planned. Instead we will be in doctor's offices and hospitals. Nothing were not used to, just not really thrilled about. Sweet Ashley Kate just can't catch a break.


Much Needed Rest

We're home and the girls are fast asleep. Blake and his dad are hanging out in our room and I'm stopping here for a moment to catch everyone up on our weekend. It was well worth the 30 mile jaunt to the lake. We laughed, we played, we rested and re-connected after all of our on again off again time spent in Omaha throughout the last 3 months of the year. It was so much fun we're thinking of doing the same thing next weekend. Nothing blesses my heart more than to spend time with our kids. All of us together. Making memories.

Ash is doing ok. She's not great and I'm not even sure that she's good, but she's ok. Its been a long time since my head laid down on the pillow at night without a heaviness in my heart. It seems that the relaxing, almost comfortable place we found ourselves in last summer is gone. I just hope its not gone for good. She just isn't the same. Her body hurts. It aches a lot. We can't touch her without her bracing herself and wincing in pain. Not occasionally, but every time we go to pick her up, scoot her over, get her dressed, bathe her, or anything. That in itself is enough to break my heart. She hasn't had any sort of therapy since becoming ill in October and Dave and I know she needs it, but at the same time are hesitant to put her through it because of her physical discomfort. She has days where she laughs and giggles and then she has days that she just can't manage a smile. The heaviness in my heart comes from not knowing what exactly has changed inside of her. I know her bowel became sick. I know it is struggling to recover. I know all of that, but something else is making her hurt. I kind of think it has to do with the medications she is being forced to be on , but still with no end in sight my heart hurts wondering if this discomfort will ever end. I also wonder if healing will happen. If she will recover completely from this rejection or if we have seen it get as good as its going to get. Either way I'm tormented daily with fear of our return to Omaha and never knowing when it will come or if that sense of peace I had this past summer will ever come back.

She continues her dumping and need for lots and lots of IV fluid replacement. In addition to the dumping, we are suspicious that her SVC syndrome has returned. Her face became extremely swollen around Friday morning and has not gone down. I'm thinking she has developed another blood clot. Possibly around the PIC line that has been in her arm since the first week in October. She doesn't look any thing like herself which is why I haven't shared any pictures lately. Tonight after changing her line dressing and cap, I flushed her line and went to check on the blood return and had none. I worked on the line for over 20 minutes and still could get no blood return. It flushes well, but won't return blood. Dave and I are hoping that it will by morning(after her TPN and fluids are run over night) because her lab work is due to be drawn at 8am. If it doesn't then we will have to take her in and have the line worked on. I'm assuming in Shreveport since those surgeons put it in for us. In that case her lab work will be late and not drawn until Tuesday, putting everything behind for the week. It all makes me a little sick to my stomach since I know that we are meticulous with her lines and have no explanation for why it won't return blood.

Anyway, our time away together was much needed. We laughed. A lot. Dave and I found ourselves giggling late into the night as we discussed how much Blake was just like him, and how much he was just like his dad. The whole scenario that played out yesterday afternoon had us in tears as we laughed about it together. I couldn't help but pause for a moment and burn that memory of the two of us snorting with tears in our eyes snuggled up in our bed in the RV. I really love this man and I couldn't imagine a better father than he. He truly is an incredible person and my kids are really, really blessed.

I guess I'll go lay my head down and pray for some rest to come. The kind of rest that comes when your heart is light and no longer burden because you have learned how to lay them down at the Father's feet. I really need that kind of rest right now. I long to have our summer days back where Ash was well and not recovering from rejection. Although I tried to appreciate them while they were here, I'm wondering if I wasn't thankful enough for the gift of those carefree days? If only I could have have those days again. Or some like them.

Goodnight my friends. I hope your weekends were blessed and full of time with your families. Take care. Trish


A sad day

Its been a sad day at our house. If you happened to stop by you might actually think that tragedy had struck or something of the like, but in all honesty its just that our Christmas decorations are down, scattered about two rooms, and making there way back into our attic this evening. My heart is truly hurting over this and as ridiculous as it may sound when you look at the big picture in our lives I am honestly very, very sad. Christmas is over. I admit it. It has come and gone and I will now be forced to wait an entire year for it to return. Its just so unfair.

On top of that Ash is feeling yucky and that makes us all pretty sad. She has spent her day signing to us that her tummy hurts. It has to be the saddest thing you've ever seen. Our sweet baby can now tell us when it hurts and to look at her sad, sad face as the cramping rolls throughout her bowel is just heartbreaking. Her big brother sat across the room from her tonight and told her over and over again just how sorry he was that her tummy was hurting. It caused Allie to kneel down next to her on the floor and place kisses galore all over her face because her tummy hurting causes our hearts to hurt.

As I type Ashley Kate sits in the recliner curled up under her blanket watching Frosty the Snowman. (This whole letting go of the holidays is a family affair.) I know I should probably pack the movie away with the rest of the holiday fare, but I don't dare cause her anymore pain today and the removal of Frosty would do just that. So I'm fixing to push play on that silly movie for the 10millionth time since early October and sit with her to enjoy another round.

And then if all of this wasn't enough to bring tears to my eyes I read that one of my favorite fellow bloggers was retiring from blog life and that made my heart really sad. I completely understand why the retirement was necessary, but if she only knew how much her words have spoken to my heart over the last couple of years. Anyway, I decided to try and share it with her, but I don't think my words did my sentiment justice. Update: Sarah changed her mind sometime today and won't be retiring after all. Yeah for all of us who love to read her words!

To ease the pain of the day I believe that we got an a email sent to us straight from the hand of God. Ok, not really the hand of God, but it could have been orchestrated by Him to be sent to us on such a sad day. Anyway, the Tarheels will be resuming practice by the end of the month and our first tournament will be the end of February. That's so great! We are so excited and if anything could make me smile on the day that Christmas is disappearing from my home it would be that the baseball gear is returning. I mean it really never went anywhere, but it will be returning to being strewn about the house. Blake is on cloud 9 and when my kids are happy I'm more than happy. On top of all of that, registration for Al's soccer is tomorrow and then she'll be on cloud 9 too knowing that the season is just around the corner.

As a way to escape all that is making our hearts sad today Dave has decided that an overnight jaunt in the RV is exactly what this family needs. A day of fishing, long toss, geo caching, game playing, and movie watching will heal our hearts. "Time is slipping away and if we stay home then all we will do is work, work, work. We need to do some playing this weekend with our kids." I couldn't agree more. So as soon as I finish this post I will be loading the RV with what we need to run down the road a few miles and make some memories. Its all about priorities. Right?

Sad days come and sad days go. This time I'm hoping the sad day goes quickly. I want Ash to begin feeling better and better as the days go by and not struggling with each and every one. At least she is able to manage a smile here and there to let us know that although she's hurting she's still happy. Just wait till we climb in the RV. Its one of her favorite things to do. Nothing makes her happier then playing in her room inside of there. I don't know why but this girl loves to travel.

So we will be absent until Sunday evening. Just didn't want you guys to worry. Hopefully the mournful period will have ended. Have a great weekend. Talk to you soon. Trish


I know it sounds awful, but thats what they call it. When your bowel puts out to much stool into your ostomy its called dumping. Anyway, I've come to hate that word. Really, really hate it because once it starts it usually means bad things are headed our way.

This morning I woke to find Ash's bag full. Really, really full. Dumping. Ugh!!!

I hooked up replacement fluids and began them immediately. She hasn't required any replacement fluids for over a week so healing was on its way. At least I thought it was. So what do we do now? We hold our breath. We wait. We don't panic. We pray. We do everything in our power to will the dumping to stop and then realize that its only by His power that it can.

So this morning would you join me in praying that her dumping would just stop. I mean just stop! I can't take this emotional roller coaster her poop drags me on. One day she's fine then the next she dumps. Its wearing me out. To think that poop rules our world. It really and truly does.

She's comfortably sleeping and unaware of all this nonsense. Thankfully one thing I've learned is that she can dump in Texas just as good as she can in Nebraska and they have no magic or no tricks to make it stop(contrary to what some would like us to think). Trust me we've spent the majority of the fall and winter there this year because of her dumping and all they can do is wait it out. We are just praying it slows down enough to keep us here and not put anyone on alert. Your prayers would be greatly appreciated. Trish


Could she be one of them?

Last night I found myself still exhausted. I'm not sure why. Perhaps the stay in Omaha, then the drive home two days before vacation, then the trip to Florida, interrupted by the next 9 days in Omaha and then the marathon drive home? Yeah, now that I think about it thats probably why I'm sleeping so deeply once I lay down. Anyway, I had a dream last night. Not a new one, but it was so real and so vivid that I hesitated to wake up this morning. I've dreamt this before as has Allison and Dave and I believe Ash's grandma has too. We all find ourselves dreaming at some time or another, but last night it was more real to me than any dream I can ever remember having.

Ashley Kate was walking. All over the house. I stood her up one afternoon and she took off. Like it was no big deal to her. I sat back in shock. Not sure what exactly she was doing in the beginning and then the excitement that spread throughout me was so, so real. I could actually feel the smile on my face. My heart was racing as I watched our very tiny, but very tall 3 year old walk around our home. She acted like it was something she had always known how to do. Then the alarm went off and I laid very, very still trying to get back to the place I was before I heard it. It didn't happen. I went into the nursery to find our beautiful 3 year old baby with her legs curled tightly up underneath her blankets while she slept. Nope. She's not walking. Not today anyway. I'll be honest and tell you my heart was let down and I felt an actual disappointment come over me. Ash doesn't walk and no one knows why.

There is no known medical reason to explain why our little one does not stand or walk She just doesn't. I guess I could try and explain it away by reasoning that a little more than half of her life has been spent in a hospital bed with a very sick little body. Honestly, that doesn't work. Most of our friends have done the same and all of them walk. We know not one other child in our "hospital" world who does not have the ability to stand and walk. Only Ashley Kate. Why? I wonder that often. We work just as hard as all the other families in therapy. We pray like everyone else. We try with her over and over and over again. Daily we work on getting well and learning to crawl, stand up, take steps, and walk. Its just not happened.

Yesterday I was reminded of a passage of scripture as we drove to the school to pick up the kids. John chapter 9. You know the story? The story of the blind man that Jesus and the disciples came across at the gate? The disciples asked Jesus, "Master, who did sin, this man or his parents, that he was born blind?"

Jesus answered, "Neither hath this man sinned nor his parents, but that the works of God should be made manifest in him."

Hmmm. I read that this morning and thought to myself, "could she be one of them?" You know who I 'm talking about? Could Ash be one of those people whom God has allowed to struggle for no other reason but to bring glory to Himself? and if she is then why is it so hard for us to accept that not only can she not walk, but she can't talk either? You would think that if this is the case it might be a little easier for us to accept the disabilities she faces. Shouldn't it? Shouldn't it be ok with me if I know God has a plan and that His plan just might include all of this to bring glory to Him? Shouldn't it be ok with me that my daughter isn't "normal"? I mean she's not even transplant normal. I know no other transplant children who can't walk and talk. Many of them struggle with the whole eating issue. I mean that's just part of the game we are playing, but walking and talking? They all can do it.

To admit that Ash has handicaps has been one of the hardest struggles for all of us. We see her as normal. She's just Ashley Kate and we love her. We love her so deeply that all the rest doesn't really matter. I mean we all know that she has disabilities, but its not something we focus on in our home. The only time we really have to focus on it is out in public. Like swallowing the fact that loading Ash with the wheel chair lift was going to be much easier on her tiny body then transferring her each and every time we got on and off the buses at Disney World. Talk about a hard pill to swallow for our children. For them to see that people were staring at us wondering why she just didn't get out of that chair when she looked to be normal. Asking us and them "whats wrong with her?" and struggling to come up with an appropriate answer. As far as we concerned Ash is fine. She is a miracle and amazing. We are all so grateful for her life. But try and get Allie's 5th grade class of girls to understand that Ash is just fine and to stop questioning her each and every time they see Ashley, "Does she talk yet? Why can't she walk? How come she still eats with that tube? Is she ever going to get well?" They mean no harm by asking. I know these girls. They all love Ashley Kate and have grown up praying for her daily, but the questions still hurt. Allie desperately wants her friends and the whole world to see Ashley like we see her. She's fine. Even if she never walks, and talks, and eats. There is nothing wrong with her. She's her sister and she is loved no matter what she does or doesn't do.

So that's why I ask if God is going to use Ashley's life to bring glory to Himself, shouldn't if feel like an honor to those of us who love her so deeply and not hurt so bad when we see her struggle? I'm just wondering. Why it is that we continue to dream so vividly only to wake and have to fight off that twinge of disappointment that creeps in realizing it was only a dream?

I believe deep down that the day is coming where our sweet Ashley Kate takes her first steps and says her first words. I really and truly do believe it will happen. And I know that when those days arrive that there will be much rejoicing and praising of God whom we will know has done a great work in her life yet again. I do have hope. There is no reason why these things can't happen for her. It has yet to be proven to us that it can't happen in her life. So again today, I will strap the stabilizers on her little legs and stand her in front of her kitchen and encourage her to forget about the pain, forget about the fear, and play. Play so hard that eventually she can no longer feel the stretch and the burn in her legs and just get lost in our world of pretend. Lets pretend just for those moments that last night was not a dream and that our 3 year old is standing and playing just like the other kids do. Eventually it is my hope that we won't have to keep pretending and that she will indeed stand there on her own accord and bang those pots and pans.

Until then I'll keep dreaming and waiting for God to reveal His glory once again in the life of our child.