Briefly Blue

We were sitting at the practice field when the playful sound in her voice changed. I turned around to see why she was fussing and thats when I noticed she had begun to tremble. Her entire body was shaking and then she got very, very pale. I called Dave at the office and asked him to meet me at home. I left the kids at the field and called another mom to let her know I had to leave and couldn't really explain. In the few minutes it had taken me to get to the house she began to vomit really violently. I unloaded her and placed her on my bed to look her over. As Dave walked in the house he said, "She's blue. She's turning blue." We grabbed the pulse ox and got a reading of 55. Then 72. He grabbed her up off the bed and we took off running toward the car.

On the drive to the hospital(its literally 5 minutes from our front door) he made a call to a friend of ours who is an ER physician to see if he was working tonight. Thank you God that he was. He got us in immediately through the ambulance bay with no wait.

We we left the house Ashley Kate had no capillary refill on her fingers or toes. That's what scared us the most.

In a matter of minutes she settled down. Her color came back. She began to sat at 100%. Her trembling stopped. She looked normal. In fact she looked great. So great that it has left us all a little confused. Its not very often that Dave and both get alarmed at the same time. We pretty much even each other out when it comes to the ups and downs of Ashley's life, but tonight we were both scared. Really scared. Then it was gone.

I'm home now with Blake and Allison and Dave is spending the night at the hospital with Ashley Kate. When I left a few minutes ago she was coloring pictures and signing farm animals. She has no fever. No signs of illness. Her lab work actually came back better than it has in months. Still we all know that something happened. We just don't know what. Our best guess is that some type of vegetation, bacterial more than likely, must have been sitting in the line or maybe on the end of it and when her IV fluids began running right before practice started it got flushed into her blood stream. This is the physicians best guess based on what took place. At that time we think her blood pressure must have plummeted as response to her immune system attempting to ramp itself up as it noticed the "intruder". Until we have a positive blood culture(which we do not at this time) we won't know if our guesses are correct or not. In some ways we are hoping for a positive culture so that we might have some answers, and in others we are hoping its negative so that we can get her out of the hospital and back home tomorrow. As our physician told us on the drive there, "This is the last place you wan't to bring her to tonight, but we have no choice." Dave and I agree. We want her home and as far away from all the germs up there as possible.

Its so hard to explain how things can go from normal to so not normal in just a matter of minutes. Ash was sitting in her car seat coloring with markers and banging on the window with a baseball just minutes before this all began. She showed no signs of illness today. She's played, been happy, silly, and sweet. Then it all fell apart and now its all back together again. I just don't get it so trying to explain it is a little hard. All I know is that I'm thankful her body is getting oxygen again, that she has no fever, and that her blue skin color was only a brief thing. I much prefer her in pink. Not only her clothing, but also her skin.

Things I love...

The most beautiful 5th grade girl in the world climbing into my car at the end of a school day. She truly is a beauty and as I watched her grin grow wider and wider with each step yesterday I was mesmerized by her face. Oh, how I love that sweet girl!

The lashes that curl so long and so dark under the eyelids of my sleeping baby girl. Something about that sleeping baby that melts me and I can't help but tiptoe up to the edge of her crib and just stare multiple times each night.

The 13 year old who rides "shotgun" next to me each and every day. That kid is amazing and there is NOTHING about him that I don't admire. Yesterday as he and his friend climbed out of the car for youth group I reminded, "Be kind" to which his friend turned to me and said with a laugh, "Blake is the kindest kid I know". Oh, how I loved hearing that. No matter who you are or what you do or don't have in this life you have the opportunity to show kindness to others. Its important to me that the children are kind to others. Its the least they can do for another person.

The hand of the man that reaches for mine underneath his pillow each and every night of our lives. I don't know how to describe how good and how comforting it feels to hold onto that hand.

The candle burning on the mantle this morning. Nothing makes me happier then to be in a room that smells absolutely delicious!

The bright red gerbers that are now planted firmly in my front beds outside of this little yellow house. Never thought to plant those before, but I am definitely LOVING them this morning. Only one more, HUGE, flower bed to go in the front and then its off to work on the back ones. I love me some flower gardens!

The house when it is shiny clean! Boy, that feels good.

The knowledge that tomorrow is my birthday. I love my birthday! Always have and probably always will. My favorite phrase? "You have to be nice to me its almost my birthday." I start using it around May 2nd and use it all the way up to the 1st. You know your going to have a good day when its your birthday. How could you not? I mean if your anything like me(and trust me its not because I'm shallow or anything. Its my love language. Its been documented) a present just makes life a little better. Put a big bow on top and my excitement immediately doubles!

Canton, Tx. Everything girly and embroidered was and is thought of and sold in Canton, Tx on the First Monday Weekends. Guess where I'll be tomorrow? You guessed it. Dave is taking Ash to her 1st dental appointment and to school all by himself tomorrow and I'm going shopping all by myself. Sweet! Happy birthday to me, happy birthday to me.

The thought of watching my kid hit the ball this weekend. We start counting down the days as we pile back into the car for the ride home each Sunday. Last weekend he played incredible. Our Tarheels went all the way to the championship game and lost in the last inning 6 to 3. It was such a great tournament. They got every possible "at bat" available last weekend and thats why we were there. To hit the ball. Winning is nice too, but the experience that comes from playing that many games is what keeps Blake smiling. When he's smiling, I'm smiling.

The 5th day of the week. Yep, that would be today. Thursday. Dave will be home this evening, kick of his shoes, stay up late with me, and not have to think about the office again until Monday morning. Thursdays are something I have come to love.

The Easter story. I've been reading through all the accounts of it in the gospels since Easter morning and have been truly captivated by the words and events recorded. Taking in and trying to absorb it all piece by piece. Oh, to know that we are so loved!

The invention of the Sonic Route 44 cups and the happy hours between 2-4 each day. To score an extra large ice tea with a dash of peach for only 99cents? Does it get any better than that? I find myself stopping on the way to pick up the kids from school each day(well not literally each day, but almost) and then kicking and screaming on the drive home until I can run to the bathroom. Not sure why I'm putting myself through it, but it is helping me to kick the Diet Coke habit which has the potential to kill me if I don't stop drinking them. So you know, its kind of important.

The excitement I'm feeling over the planning of a certain someone's 4th birthday approaching in a mere 3 months. Got to start early to get it all done in time! She's going to be 4! I LOVE that.

The internet. Ours has been down this week and that means I can't talk to you guys. Man, that makes me crazy, but its back and here I am! Love ya'll.

And last but not least, the empty laundry hampers. Can I get an AMEN? Yes, I know they will be full again by the end of the weekend, but for this moment each bathroom is sporting an empty one and that is something I LOVE.

So, I'm off to finish flower beds, pack the kids for the weekend(Allie has a choir competition at Six Flags and gets to spend the weekend with friends and Blake is playing in Terrell this time so once I've finished shopping tomorrow afternoon I'll come home and load up in the RV with Ash and the boys and turn right around and head back that direction), make beds, clean a couple of bathrooms and play with my almost 4 year old beauty. Hope you have a wonderful day and are surrounded by blessings.

Unanswered?

Last night I stood in the nursery as Ashley Kate played and Allison sat close by reading a book. The following conversation began.

"Mom, does God give you what you ask for if you prayed?"

"Well, Allie, He's not a genie and doesn't promise to grant us 3 wishes." I thought she might giggle at that statement, but her heart was much heavier then I had suspected. When I didn't hear her giggle I turned around and asked her,

"Why do you ask that?"

"Never mind."

"Tell me what you are praying about and maybe I can help you understand."

"It doesn't matter. I'm not going to get it and He didn't answer my prayer. Why does He answer some people and not others?"

This conversation was quickly becoming difficult for me because I didn't know the right answers to her questions and I have often wondered the same things myself.

"Allie, its not that He answers some people and not other people. He might just answer us with a "no" instead of a "yes" because He knows whats best for us even when we don't. What are you praying about?"

"I've just been praying for a long time that He would let Ashley walk or even talk to us while she is 3 and she's not going to be 3 much longer so He's not going to answer me."

I had no wisdom to share. No real answers myself. Just a HUGE ache in my heart for the disappointment I saw on her face and the disappointment I personally held in my own heart over the same issues.

"Allie, I don't know all the answers, but God does. I don't know why He is doing what He is, but I know that He is doing what is right for us because I trust Him. He promises us that if we love Him with our whole hearts and ask things according to His will that He will give them to us. The key is "according to His will." It might not be His will for Ash to ever walk or even talk."

"I'm not going to get what I want because I didn't ask it the right way. I didn't know you had to ask according to His will. So its not going to happen."

Her heart was clearly disappointed and I'm not sure I helped. The only thing I am sure of is that Blake and Allison both struggle with Ashley Kate's disabilities and they hold onto such hope that its going to be different for her someday.

Blake discovered the new "handicapped" parking decal in the car yesterday. It caused him to become very upset. "Why do we have that? Can you put it away please? I don't want to see that. Its not fair". I tried to explain that the reason we got it was to make things easier for Ashley when we were at the hospitals or doctors appointments or her school. I tried to tell him how hard it is to get her and her chair unloaded and situated in the rain and that we would only use those spaces when it benefited Ash.

"Thats fine mom, but I don't want to see that and I don't want it on our car. There is nothing wrong with her."

With the search for a new home that has hallways wide enough, spaces enough to make more accessible, and rooms for therapy and classes we have had a lot of explaining to do. Getting Blake and Allison to accept where we are with Ash and that we aren't giving up hope of things changing has been difficult. I love that they look at her with blinders on. When they hold her or play with her or rock her to sleep they only see "her". They love her so deeply that it protects them from seeing that she is different. I know they know she is, but they pretend that she's not and thats ok with me if thats what they need to do.

Both of the children have a "best friend" if you want to call it that. Two friends who have spent more time with Ashley Kate and in our home then all the rest of their friends. I love to have them with us. They too see Ashley with the same blinders. They sit and study signs with her and learn to communicate with her. They play and interact with her. They are comfortable in our home and with our baby. It makes me giggle to look in the rear view mirror and see two 13 year old boys tending to the needs of our 3 year old and doing their best to figure out what signs to use to help her. My heart is grateful. So very grateful for these kiddos who embrace our life when they are with us and make it easier for Blake and Allie to do the same.

What I'm learning is that this is a process. I have good days and bad. Dave does too. Moments when we long for change for our Ashley. Blake and Allison are not any different. Learning to accept what is to be and what is not to be hasn't been easy. My hope is that somehow we find peace when our hearts need it, understand that it is alright to allow the tears to fall when we need to, and keep giving Ash all that she needs to succeed in this life. We love her more than words can express. She fills our home with such joy.

I encouraged Allie not to give up. I want her to keep praying for Ash and for the desires of her heart. I shared with her that we all pray the very same things for Ashley Kate and that we won't stop. Perhaps someday we might see that the Father has indeed said "yes" in one of these areas. I would love nothing more than to see our little one "walking and leaping and praising God" just at the lame man who was healed did. What a day that would be!

Big girls don't cry

...but Ashley Kate does. Her first day was a little traumatic for her, but overall she did great. Dave and I hid at the back of the room behind some easels and watched our big girl from afar. I can't even describe how it felt to see those little feet dangling off the floor even though sitting in the smallest chair they had available. It is so hard to believe that she is here. Even after all this time I stare at her and am reminded of the miracle of her life. So many times I thought I'd never see this day and yet here we are. I'm proud of her. So very proud.

The cutest thing about the whole experience was her new eraser. Dave wanted to get her a new back pack, but I reminded him that she has about 6 of them already(for her pumps) and that it wouldn't be that exciting for her to get another one. He opted for the run of the mill pink erasers and she LOVED it. She held onto it tightly the whole day and is still playing with it now. It makes me smile to see her with it and makes me smile that Dave is beyond excited about his gherkin being well enough to be in school. Life is good.

At one point during her lessons we couldn't help but giggle when Ash signed to her teacher, "sshhh...sleeping...bye, bye". We laughed so hard about that. Her teacher politely told her that it was not time to go to sleep and that she wasn't ready for her to go just yet. Then she asked Ashley to turn the page in the book and our girl defiantly shook her head no. That was pretty funny too. Not so much the defiance part(we'll work on that another day), but the stubborn streak that Ash has within her. She wasn't interested in turning pages for her teacher she wanted to leave so she could go to sleep.

We are on our way to DeSoto tonight. Blake will be playing there this weekend and so its off to the ballpark for us. Wish me luck, Dave is working in Dallas this weekend so its me and Ash on our own without any help at a baseball tournament. In all honesty I'm exhausted just thinking about it, but so excited to be watching the Tarheels this weekend. I'm sure it'll work out fine. Hope you all enjoy your weekend. I'll catch up with you sometime Sunday or Monday. I'm hoping its a long weekend for us. Long weekends=lots of games. That'll mean were winning. Take care. Trish

No Judgement

Not from me anyway. A few of you were questioning whether or not I was making a judgement against those who do in fact drop their kids off at pre-school and enjoy that time. In no way was I passing any form of judgement on anyone. So sorry if it seemed as such. Honestly and truly I was not and do not judge anyone for their parenting decisions. Its a HARD job and I choose to believe that we are ALL doing our very best to make the best decisions we can when it comes to raising our kids. I was just sharing that even had they wanted us to drop Ashley Kate off at the front doors that it wasn't likely to happen with this set of parents. Its just not what we do. Never have and probably never will. I didn't blame them one little bit for not being thrilled about a central line, a mic-key button and ostomy bag and even though they mentioned that they might be able to get a nurse to follow her around and have her trained to care for Ash I knew it wouldn't be necessary because I had already spent my time away from this child and it wasn't going to happen again. Those first 16 days of her life that we were not allowed to be by her side as she literally lay alone fighting to live as we waited for court orders and the whole bit were enough for me. So now I choose to spend each and every moment with Ash and LOVE that we are fortunate enough for me to do so.

We made decisions early on in our marriage about the whole stay at home mom thing. I can't express how wonderful it has been for our family and I would highly recommend it if you can figure it out. We never really had to choose if we could afford it or not, we just made sure that it was the priority. That's what works for us. I know it doesn't work for every family and I don't pass judgement on those that it doesn't work for. Like I said, we are all doing the best we can. How does it work financially? We make it work. Modest homes. Older cars. No credit cards(been there and done that whole thing and what a waste! With age comes wisdom. Ha, ha!).

Blake, Allie and Ashley have been my job. I'm a mom. My attention isn't divided. All I do each and every day of my life is concentrate on raising the children. I began home schooling early on in Blake's life. He was 2 years old when we started organized learning, and we stayed with it until the year Ashley was born. It was never my intention to teach the children in high school. My goal was to raise morally confident children who were responsible, respectful, and developed good character. Plain and simple. It was also never my intention to start them in school before they were pre teens. The way things worked out when Ash was born changed my plans. Had she been born healthy I'm sure I would have kept on teaching them until they were middle school age. Ash was born, she was very sick, we lived(she and I) in the NICU two hours from home for the first 6 months of her life. We brought her home with the knowledge that she was dying from liver failure and that a transplant would be the only option. That next fall we enrolled the children in their school and it has been such a blessing on our lives. A few weeks later we got "the call" and Ash and I moved away once again to battle for her life. You know the story from there. Its been up and down, back and forth. The time we have at home and together remains the most precious thing in our lives.

So on to the next topic. Moving. Why would we leave our little yellow house? Not because we want too, but because it is becoming necessary. Remember those hard "pills" I talk about having to swallow? We have some of the biggest ones looming on the horizon and the older and bigger Ashley Kate gets the closer they are becoming. Dave and I are working on swallowing the idea of accessibility for Ash. Currently our home is not equipped for what she will need as she gets older. It is becoming more and more difficult and we are going to have to modify our home to meet our daughters needs. Things like wheel chairs, ramps, accessible bathroom, etc. Our little yellow house is not big enough to accommodate these things. As hard as it is for us to admit it, not because we are ashamed but because it feels as though we are giving up, our daughter is handicapped. She is. She does not walk. She can not lift herself in and out of the bath tub. She is not able to get out of bed on her own. She does not dress herself, feed herself, or in anyway care for herself. I'm sure I don't have to tell you that huge, hot tears are streaming down my face and that my heart is broken each time I share these things.

We need space. Big open space and lots of it. Currently we shift. Therapy equipment from room to room and corner to corner depending on what we are currently using. We have resigned ourselves to the facts. Whatever we find will have to be redone. Floors are the main issue. Then we have bathrooms to tackle. Extra rooms for Ashley's therapy and home classes would be a huge bonus. Its not a small job. Finding something that can be redone to meet the needs and that has enough space isn't proving to be easy. Its going to be a long process and then finishing the job is also.

So there you have it. Hope I answered your questions. Its time to get Ash up and moving. Have a great day and God bless. Trish

1st Day

Tomorrow will be Ashley Kate's first day of school. Its official. I have a child attending public school. Honestly, I NEVER dreamed it would be our tiny, miracle girl that would beat the other two to it. NEVER in my wildest, but it is happening. Sort of.

The school district has finished all of its evaluations of our girl and have developed a plan of teaching to assist us. Each Friday(even during the summer time) our Ashley(and her mommy and daddy. They aren't too thrilled about the prospect of changing ostomy bags or line dressings and we aren't into the whole drive your kid to school and drop them off thing.) will attend school where she will receive physical and speech therapy from the teachers there. In addition to this they will be sending another teacher into our home 2-4 hours a week to assist her in learning all of those things she's never learned while also using sign language while instructing her. On top of these things we will continue with our private physical therapist each week and also will be bringing in a private therapist who is fluent in sign language as well. She is going to be one busy little girl. Really busy.

Interestingly our groups of teachers and therapists will be approaching her from two opposite ends of learning. This cracks me up. One of the things we LOVE about our private therapist is that she agrees with us that Ash needs to learn to be a three almost four year old. This is where we concentrate our efforts. Our new therapists aren't too interested in that yet. They want to teach Ash how to do all those things she never learned as a 3month old, 6 month old, 9 month old, etc, etc. That's fine too, its just different and to be told that "no she wasn't ready to learn what a circle, let a lone a red circle is yet because she hasn't learned to stack a tower of 3-5 blocks" just caused me to chuckle because she's already smarter then what they are giving her credit for. So our in home teacher will not be including learning shapes and colors on her goal sheet. Instead it will say "needs to stack blocks". Just something I found to be funny.

In addition to other things the school will be teaching her and us something called PECS. Its a system of using pictures to communicate rather than sign. Since Ash is not deaf they believe she needs to learn using assisted devices such as picture boards and voice things(not the official name for it, but I can't think of it right now) to communicate with others. It kind of makes sense. They keep pointing out to us that the "world" doesn't use sign language to communicate, but everyone could understand what Ash is saying to them if she handed them a picture or made a sentence out of a series of pictures. So this will be something new for all of us. Ash will no longer be allowed to point to what she wants or to just sign an object. She will be required to pick up the picture and sign it to us. This is going to be one smart girl. I really hope she begins to speak. This is alot like learning a new language.

There are a lot of things going on around here. Ash continues her vomiting and intermittent fevers. Her liver numbers are looking yucky, but she continues on full feedings with no TPN. She is doing "ok". Not great, but "ok". We are also officially in the house hunt. We have outgrown our tiny house and are having to seriously consider moving on. Not something we want, but desperately need to do as Ash's needs continue to change. She requires more and more "stuff" then we have room to hold. We have actually found a house that is double the size of ours with more room then we would know what to do with, but it would require a lot of work. Something we are willing to do if all the numbers work out, but this is just the beginning of a long process. Our hope is to have a larger place by the end of the summer. Anyway, just something we are beginning to pray about and seek out.

Allie just called to let me know she forgot her lunch. Guess I'd better get it out to the school so she's not starving. Hope you all are well. Talk to you soon.

Bedtime Story

Fresh jammies, her favorite book, twinkly eyes, and ornery grin...I think she's ready for her bedtime story. No more whispers were heard today, but the twinkle in her eye would appear each time I asked for her to talk to me. That's enough for now. I'll take the twinkle. It assure's me that she's feeling more like herself.

Goodnight guys, its time to read a little bit of Goodnight Moon.

Whispered

Late this afternoon I sat in the floor reading a book to Ashley Kate. Dave was working in the recliner and Ash was snuggled up on my lap. I flipped pages and signed the words of the pictures she was pointing to over and over again. Then I began to sign "momma" to her over and over again. I would say "Momma reads the book" and sign "Momma, momma, momma". She was getting tickled by the whole thing. A little smile would cross her face and she would snuggle her head onto my shoulder. I just kept taking her hand and signing the word. I would say it to her as I signed. Then I began to say to her, "You say it and I'll sign it." We did this for a few minutes and then I heard a whisper. Her voice was the softest and quietest sound I think I have ever heard. It was so beautiful. The whisper of her voice took us by surprise. We hadn't heard from her in so, so long. Tiny and sweet that whisper stole my heart and has had it captivated ever since. I can't stop thinking of how it sounded. Of how she sounded. I didn't dream this. I didn't imagine it. Although I have dreamt and imagined hearing her say it just one more time more times than I can count. I know this really happened because as she whispered the word "momma" I looked up at the same time Dave turned to look at us and the surprise that was on his face I'm sure was a mirror image of mine.

"Did you hear it?" "She said it, didn't she?" I asked him again and again. He nodded and assured me that he heard her say it too.

"Momma, momma, momma."

I heard it three times then she snuggled into my shoulder again and it was gone. I tried over and over again to get her to repeat it even just one more time, but she was done. Only a whisper. Thats all she had to share, but I can't even express to you what that whisper shared with my heart. She is in there. I mean her voice is in there. It is. She remembers. She does. I don't know how to help her find it again. I wish I knew a way to make it easy for her, but I don't. So I will just continue to be patient, to ask, to try and teach, to pray and to hope with all that I have that her whisper will be heard by our ears again. Then again. Then again. Then again.

Oh, how I have missed hearing her say my name. I long to talk with Ashley Kate. To listen to her share what's on her mind and her heart. I dream of her chattering in the back seat. I try and imagine what it might sound like to her her tiny voice sing Jesus loves me or the ABCs.

Today we were blessed. Such a tiny voice, for just a moment, but a memory that will last a lifetime. I am so grateful.

Serious Consideration

It never fails. I just don't get it. If I mention, talk, or write about Ash feeling good, doing better, looking great then ...CRASH. All of sudden things change and I hear myself saying, "What happened?" Its getting so old.

Ash had one of her best weeks in a long, long time... until I mentioned how grateful I was for it. The moment I put it out there things changed and I honestly thought that if I shared it then I'd lose it. Sure enough she woke yesterday morning with fever. It lasted all day long. Then the vomiting started up. Full force. Projectile all over the car while I was driving to pick up the kids. It covered the back of the drivers seat and my hair! The diaper bag was full of it. Her car seat soaked, and she was scared. Really scared. The look on her face in the rear view mirror was awful and I couldn't get pulled over fast enough to help her. I think it was a total of 6 or maybe 7 episodes on the 15 minute drive. It exhausted her. Next came the high stool output. All of this fluid loss led to the need for IV replacements confirming in my mind that even though she has come off of TPN that we still need this crazy central line. Its much easier to give her fluids with one then having to run to the hospital for an admit, an IV, and re hydration. UGH!

I have no idea what today will be like, but I'm hoping its better for her than yesterday. She has 2 evaluations this morning. One at 9am and the next at 11 and by 1pm she should be all done. I don't expect too many more. I think every one will have all that they need after today.

So it feels like I'm under attack. It really does. I almost feel as though I shouldn't share any details about Ash when she is well because as soon as I say I'm feeling blessed, good, or confident that she's turning the corner then it all falls apart. I get tired of sharing the ugly stuff. Really tired. It exhausts me to live it and I can't imagine how exhausting it would be to read about it. Not to mention discouraging. With all this going on I'm giving silence some serious consideration. Maybe I should just stay quiet? (Ok, I know Dave is cracking up about that last statement. He's been trying to get me to be quiet for 17 years and its never worked. I'm not so sure quiet is the solution. Maybe quieter?)

Hope your day is blessed. I'm fixing to jump into mine. Have a great one.

Our old Ashley

What joy flooded my heart tonight as I listened to her giggle. Her smile still melts me and that twinkle in her eye that just shouts how happy she is captivates me. What a blessing it has been the last few days to see our old Ashley coming back to us. My sweet, sweet girl, the one who forgets and forgives so easily all that she has gone through. I love her. So very, very much.

It looks as though this might be the 3rd night in a row that she has slept well. After so many long months of struggle, of coughing, of gagging, of fevers, of vomiting she is getting a break. It keeps me awake at night. The sounds of peace. The gentle sounds of her breaths rather than the miserable, uncomfortable whimpering that I have listened to for so long. My sweet, sweet girl. I love her. So very, very much.

I can't help but be grateful for the good days we are stringing together. Again today she needed no IV fluids. Again no TPN. Full feedings flowing into her tummy and down through her bowel. Feverless days are wonderful. She is so alive and so very happy.

It was another silent day for my phone. No calls came in from Omaha. No news from pathology. Another day home with Ash. We are just so happy. Truly happy to be together. I love home.

Tonight I prayed that for sweet Emerson. Home. Where she belongs. With her brothers. I want it for her so very much. To grow up in her bedroom surrounded by all things girly rather than a hospital room. This is my prayer. She's been away for so long. I want her mom Erika to experience that feeling that comes over you the minute you carry your baby girl back through the front door. There are no words. When you have watched them fight for every breath and have kissed them good night over the cold metal bars of a hospital crib for months on end nothing in this world feels more welcoming then that first night home. Sweet Emerson, you can do this. I believe in you.

Thank you for praying for our friend. Your prayers are so appreciated. Good night. Trish

JOIN US...

...tonight as we pray for our sweet friend Emerson who will be going through her second transplant tonight(liver, bowel, pancreas, and KIDNEYS(2 of them). They received the call and she is being admitted now. They expect to begin sometime after 10pm tonight. It will be a long night for her and her family. Please join us in praying for them. You can read updates on her mom's journal at www.cotaforemersonw.com.

As always we hold the donor families close to our hearts. As we celebrate for Emerson we must grieve for another family who is saying their good byes.

Thanks for loving us and our transplant friends.

Trish.

Today I'm...

Thankful for this little girl and thankul she can do this...



I am reminded not to take what she can do for granted. There are many, many mommy's out there who would trade places with me in a moment just so they might see their little one have the ability to sit independently and play. My Ashley can do both of these things and as I sit and watch her this afternoon I am thankful. I love her so much and I'm so grateful she can sit up. She is not confined to her chair and she can move all of her limbs. She has a strong mind and the ability to communicate through her hands and I'm concentrating on all of those things as her final evaluation approaches.

She is having a really good day. She feels good, is happy, is playing, and looks great. Full feeds are agreeing well with her and I look forward to the day when she begins to take a little by mouth again. At this time she has fork in one hand and wooden banana in the other(from her kitchen set) and seems to be studying them intently.

We have a busy weekend coming up. Ash has a final evaluation with the school district to determine what services they will provide. Then we have a baseball and a soccer tournament on the schedule. Our plan is to watch a little of both the kids and run back and forth between Bossier, LA and Longview. What a blessing it would be if the game times worked out. Allie's is scheduled to play at 9, at 1, and at 5 on Saturday for pool play. I haven't heard Blake's bracket yet. Then tournament play will take place on Sunday. We're going have a great weekend and I'm so thankful Ash is feeling good this week.

Too Soon

So my last post "spoke too soon". I heard from Omaha today and they expected to receive the biopsies today. The whole over night mailing got messed up and they haven't even gotten them yet. UGH!!!

Once they look at them they will be calling with results. We will know something in the next few days.

The waiting makes us crazy!

No word

Its been a week since Ash's scope and we've literally heard nothing. I think that's good?

Pathology in Shreveport failed to look at the biopsies. I think it was just a communication error. The surgeon told me that they would block and prepare the slides, read them, and then send them out to Nebraska and that a report would be ready by last Friday. Yesterday, Dave spoke with the pathology department and found out they received the specimens, prepared them and overnight them to Nebraska without viewing them. Nebraska should have received them by Thursday. Its now Tuesday and its never taken this long for them to call us if they wanted us. So...I'm hoping all is well and they don't want us.

Ashley has been off of TPN for two nights now. She has required no IV replacements for the past 2 days. She is on full feeds at 80cc an hour for 24 hours a day. It took her 6 and 1/2 months to get back here, but she did it. Her stool output is double what the transplant team wants it to be, but it is half of what it was at the height of her rejection episode late last year. I'm taking that as a good thing also. Not perfect, but better than it has been when she is in active rejection.

These two things have me leaning toward the idea that perhaps she is not back in active rejection. I think?

She had gone for 3 whole days without any vomiting. Dave shared with me a little while ago that he used that as his praise this morning while driving the kids to school. Then I had to tell him that she had just vomited all over the bed. The decrease is still a praise for us. Any relief for her is a praise.

I'm hoping our phone doesn't ring. I tend to cringe each time the area code 402 comes up on my phone. I just never know if its going to be good news or bad news. I keep thinking of how quiet life was last summer and wishing for things to return to that. I didn't hear from Omaha for months and when I did all they would say is "How's Ashley doing, we haven't heard from you in a while." That was the best feeling in the world. I truly believed she had come out of "the woods" and was headed for only good days.

My hope is that we really are looking at span of good days that will lead her into months and months. I'm also hoping my phone doesn't ring.

Because you asked

Well, technically not everybody asked, but for those of you who did ask about the "gait trainer" and what it was I decided to answer you.

Please excuse our appearance today. I didn't plan on taking pictures when pulling that messy hair into a bun, but I did add the pink bow and in our opinion a pink bow ALWAYS helps. No matter how messy the hair is!




So this is Ash in her gait trainer. I guess you could also call it a walker of some sort. It had the word RIFTON on it and so I'm assuming that is the company who makes it. It doesn't belong to us. It actually belongs to our PT who has allowed Ash to "borrow" it for the last couple of years. Yep, I said years. Yep, we too thought she would be walking by now, but she's not yet and were not giving up on it. So its been a couple of years that we've been working in it off and on between illness' and such. Its really a neat piece of equipment. You can do all kinds of things with it. Like change the positions of all the supports, handles, seats(by the way the seat has been removed and she is standing without its support using only her legs:), straps, wheels etc. Its adaptable and just when I think we have adapted in all the ways possible Sue comes in and makes another adaptation and "POOF" it meets her needs. Thats why I love it so much.


So in the first picture you can see that she is wearing her glasses. Thats because she needs(or so she thinks she needs) to use her hands to hold on and thus can't remove them and toss them across the room. This is a perfect time to make her wear them. She is concentrating so hard on not falling that she forgets they are on. She looks happy enough, don't you think? Thats because I took these pictures before I made her start "walking". Then it got ugly, really fast. Not pretty pictures.

This next picture shows you a view from the back. I think it also shows you just how tiny her legs are. Very, very tiny. In all actuality Ash is a tiny person. Her arms, her legs, her hands, her feet are all very tiny. Her face? Not so tiny, but that is a side effect from the steroids she is on. I would LOVE to eliminate those nasty steroids from her life, but I don't see it happening in her near future. This whole rejection issue that rears its ugly head is keeping her on them and causing her face to be very, very large and not so tiny. Oh well.

I showed you this back view so you could see her safety net. The big green bar that goes across her bottom. She thinks she's needs this bar. When we switch everything around and put the bar in front with her facing the other direction then she refuses to stand up straight. Instead she bends at the waste while holding on to the handles. For now we have decided that having her full weight bearing on those feet and standing up straight is more important. Later on we will force her not use the bar as her "safety net". Once she gets better at standing up and becomes stronger.



As you can probably tell Ash is watching a program. This is what she gets to do while standing up. For two reasons. First it keeps her from screaming and distracts her attention away from what her legs are doing. Second, its a good way for me to keep track of how long she is standing up each day. On our good days she had been able to stand for two episodes of Blue in a row. On our not so good days she makes it through the first half of a Wonder Pets show. So anywhere from about 15 to 45 minutes consecutively. Then she sits for a little bit and we go again.

The shoes you see her wearing definitely would not be my choice for this outfit, but they work best for therapy. They are a high top leather shoe made by Strideright. I would never take her out of the house in this shoe. Just being honest. Ash only wears Keds. Occasionally a sandal. Most days her shoes only stay on until we get in the car and then once I'm driving off they come. Even when its cold. No shoes, no socks is her preference. I put them on each day and then end up keeping them in the diaper bag. Not sure how I got off on that tangent, but I guess it had something to with her standing therapy.

Well, I won't keep going. I think you get the picture. If you have anymore questions about how we get her to stand and walk and what equipment we are using feel free to ask. Tomorrow I'll tackle the whole communication topic and try and answer those questions too.

We still haven't' heard any kind of pathology report. I guess that's good news? If they don't call us they must not have anything to talk about. I hope that's what this delay means. Talk to you soon. Have a great day.

Steps

I struggled figuring out what title to write for this post. I couldn't write "baby steps" because she's not a baby anymore. That realization came to me as I kissed her as she slept last night. Her long legs stretching from end to end across the crib. Nope, our sweet Ashley is no longer a baby so the title "baby steps" wouldn't be right. I guess we'll never have any of those to record. That makes me a little sad. I typed the words "first steps" and then quickly deleted them because I thought that might be a little misleading. On top of that they weren't exactly what we want to remember as her first steps. So I settled on the word "steps" because technically they were steps of some sort and they are the steps that we pray will one day lead her to taking those first steps on her own.

During therapy on Friday Ashley took steps. She really did. It was the first time we had actually seen her bend her knees, pick up her legs and pull her feet forward. It was such an amazing thing to watch and yet one of the most painful things I've ever seen. Nothing with Ash is easy. Each and every achievement evokes such a wide range of emotions. Tears rolled down her cheeks as we pushed her to her max and tears stung my eyes as I felt such a pride and a pain well up in my heart.

Ashley was placed inside of her gait trainer. We had removed the seat from it weeks ago forcing her to stand up full weight bearing on her own feet. The standing hasn't been easy, but she's doing it. We have the side supports pushed up around her torso under her arms and the handles out in front of her. She stands on her legs and holds on with her hands. In the previous couple of sessions I would sit in front of Ashley and tap or pull the back of her knees encouraging her to move her legs or "take a step" toward me while Sue(our PT) would push the gait trainer forward. Ash would drag her foot forward with much "encouragement" from my hands, but was never able to pull her right leg forward at all. It was starting to concern Dave and I because she seemed to have no ability to bend that knee and lift that foot on her own. Well, on Friday we saw that she indeed does have the ability to move that right leg. It's not easy. It took all of her strength. She cried many, many tears, but in the end she "stepped" those tiny feet of hers all the way out of the house and to end of our driveway.

I can't explain to you what it feels like to watch your daughter struggle as hard as Ashley did that day to do something that should come so easy to her. There is pain, there is hurt, there is pride, there is admiration, there is joy, there is anger, there is a lot involved. I encouraged her as Sue pushed the trainer forward. I cheered her on. I would tap on her knees when she thought she couldn't go one step further. I cried with her. I hurt for her. I held her close at the end of the driveway and loved her more than ever. This child has been through so much and yet she wakes up each day and tries again.

It exhausted her to take those steps. I wish I would have counted how many of them it took for her to make it there. Along the path there were great moment where I watched her move her legs on her own in a left right left pattern. I saw her do that twice. Along the path there were awful moments where I watched her little body try to collapse through the trainer. I saw that happen to her twice. She wanted to give up, but did not. Along the path there were in between moments where the steps did not come quickly, but they still came. One, two, three. Right, left. I'm sure for my Ashley it was the longest path she'd ever been on. She wanted it to end. She wanted to finish. She wanted to be done and be picked up and carried off of that stupid path. As her mommy I hurt and I celebrated. As ugly as it was she was doing it. Through her cries, her screams, her tears she stepped her way all the way to the end of the path, and then I picked her up and I held her. I walked her back up the path and I told her how much I loved her. I told her how proud I was of her. I kissed her and comforted her and then I stood there in awe of who she was and how she walked along the path set before her.

In so many ways I feel like I've been on that exact path with Ash before. I feel like the picking up of my feet to keep going one step further had taken all of my strength and as the tears fell from my eyes I wished for it to end. To get to the bottom of the path so I could sit and rest and wait for someone, anyone to pick me up and hold me. I learn so much from my daughter. So very much. She is an incredible person with such a story. A story that continues to be written each and every day. I watch her smile and I wonder how she can keep smiling. I watch her reach up to me and I wonder if I could reach out for the one who made me work that hard day after day.

Oh, how I love this little girl. Oh, how I want so many things for her. Oh, how I watch little girls her age run and play and giggle and imagine what it would feel like to see my Ashley do those things. Someday. If Ash can find the strength to keep stepping one foot at a time then someday she will be one of those little girls. Never just like them because she will know too much. She will remember the pain of getting there, but I somehow think those memories will help her to appreciate it more. She won't take for granted each of those steps, but perhaps she will celebrate them. I know we do. Even if they aren't her baby steps or her first steps they are still steps in the right direction. For that I am more grateful than you will ever know.

Back and Forth

The phone calls just keep coming. I feel as though we're playing phone tag with our transplant team the last few days. Information is flowing back and forth, back and forth, but no word on slides, biopsies, rejection, etc. just yet. I feel confident that we will not be away from home this holiday weekend and that blessed my heart. Tomorrow morning I will call and here what pathology in Shreveport feels is going on, but as of this afternoon Nebraska had not seen any of the slides yet. So although I'll have a good idea sometime tomorrow morning, we won't know anything final until early next week.

Ashley's drug levels were so low on her lab work this week that they both came back as non detected. That's not ok. We are all under the assumption that because of her vomiting that she has been unable to absorb them properly. To be honest our nights have run together in my mind and I can't remember how much she vomited on Sunday evening. I'll just guess that it was one of the rougher nights seeing how none of her meds were found in her blood the next morning. We will be repeating those levels in the morning and hoping to find some present. When concerned about rejection the last thing you want to hear is that she had no evidence of immunosuppression on board.

The surgeons' have also decided to add Prevacid back into her med schedule to try and help with all the vomiting. That phone call made me giggle because we suggested or asked if that might be a good idea a few weeks back and were told no. Today they acted like it was a fresh idea and something that should definitely be done. Like I said, I giggled and said thanks. I really hope it helps her. The last thing we want for Ash is more medication, but in this case we are desperate for anything that can ease her discomfort in this area.

The good news this week is that Ash has finally made it up to full feedings and should have her TPN discontinued. Except that we decided not too. After speaking with her nutritionist we thought it best to continue running it for the 8 hours until we find out what is going on inside of her bowel. Once we know if she's in rejection or not then it will be easier to decide. Honestly, the whole idea of stopping her feedings when it has taken us 7 months to get back up to full feeds is heart breaking. Its been a long process and now she is danger of having to begin it all over again.
Oh well, we will know more next week.

Ash has had a really good day. She looks great. Feels great. Is great. Only 2 episodes of vomiting and they were relatively small and short lived. She is snuggled up in the recliner next to Blake as I type and she just looks too sweet. I think they may be drifting off to sleep.

Well, that's all from our house today. Its time to start dinner. Dave will be home soon and since we have no practices tonight we are looking forward to hanging with the kids. Have a great evening. Trish

Coming Around

Our little pickle is up and around. After sleeping most of yesterday, all of last night(except for a little whimpering with eyes closed), and late into today, she is finally coming back around. I think she just had a hard time getting the anesthesia to wear off or perhaps it just allowed her to catch up on all the rest she had been missing lately. Either way, she's awake, eyes are opened, bow is in place, and she's trying to smile. Kind of.

We rescheduled therapy from today till Friday. Just to give her a little time. I think it was a good decision. Had I tried to wake her up and force her to work hard today it would have been a disaster. Instead she got to take it easy and just play with her books and puzzles.

Not much going on with us this week. No more ball practices, scrimmages, or games happening. A little time off for the holiday weekend. I was able to run over to Canton last Friday and pick up an Easter dress for Ash. Its just too sweet. I'm hoping to take some pictures of her this weekend. I might even convince Blake and Allie to go with us for some professional photos to be taken since everyone is going to be home. Who knows. Its been over 2 years since I've had anyone else take their photographs. It could be fun.

Tomorrow is the last day of school for the kids this week. Then they will have a 4 day weekend. I'm really looking forward to that. Its going to be nice to hang out with them. I'm dreaming up some fun activities and holiday projects to keep us occupied. Hopefully our phone will remain silent through the weekend and our Ashley will feel well.

Dave should be coming through the door at any time so I guess I need to get off the computer. Hope your day was blessed. Trish

Back Home

We decided it would be best for Ash to come home to rest tonight rather than staying at the hospital. I LOVE how her surgical team in Shreveport want her to be home. They truly understand the importance of her being as comfortable as possible. Including her emotional comfort. Home is always better.

She never feels good after a scope and biopsy. Today was not only the scope of her bowel, but also through her esophagus and into the stomach. She has been bleeding from all openings this afternoon. She is gagging and vomiting blood from her stomach each time she coughs. She is bleeding into her g-tube(feeding tube) from the stomach, and also bleeding into her ostomy bag from the inside of her bowel. Its not surprising. They removed 10 tissue samples(biopsies) from both the proximal and the distal bowel. Thats quite a bit of trauma for a little body. She has been sleeping comfortably in her crib for the last hour. We will be keeping a close eye on any fevers that arise. Not only can bacteria be stirred up during a scope causing fevers to rise but also there was some extra access and extra sets of hands going in and out of her central line this morning in the OR. If she spikes fevers then we will send cultures to cover all our bases.

Dave's mom took Blake took practice tonight so I could stay in with Ashley Kate. I'm so tired. Just absolutely drained. I think I need tonight to prepare my heart, my mind, my emotions for the just in case that may be coming our way. Of course my hope and my prayer is that we only have an infection and a few ulcers stirred up in her bowel. I truly hope that is all that is going on. Dave and Allie are on their way home and 10pm couldn't come fast enough for me. I want time with them. Time to just sit still and visit. All of us in the house together. I just want to soak in the moments, the conversations, the stories, the everything. When I'm done with all of that I'm going to kiss those foreheads goodnight and then cuddle up close to Dave and just be near him.

Its been a long day.

"Definitely Something is Going On"

The stomach is fine. The esophagus just mildly irritated, not a big deal. The distal bowel(leading down to her native colon) is fine too. Its the proximal bowel(the transplanted organ that leads back up toward the stomach) where the surgeon KNOWS there is something going on. What that is he isn't sure. He said it is irritated, sluffed, mucousal shifting, ulcerated, inflammed, and what more can be said. The preliminary reports will be in by Friday morning. Whether its rejection or infection or rejection-infection we don't know until pathology decides.

Personally I'm feeling sick. Really, really sick at this moment. Its going to be a long week and then it all begins again.

If it is rejection, and if they want to treat with steroids, then I will do everything humanly possible to have that treatment done here. Its going to be a battle, but one that I am convinced will be worth the fight. Whether or not they will want to begin treatment with steroids is a decision our transplant team will have to make.

Please pray for our Ashley, for our family, for everything. This ride is more than exhausting. There have been very few days of internal peace. Our hearts are continually burdened and heavy with thoughts of rejection and leaving home at any moment. I am doing my best to hold myself together on a daily basis and keep life as normal as possible for our children. All 3 of them deserve nothing less from me. Life, day in and day out, giving them the opportunity to grow up together in our home with two parents. I desire nothing more. I don't need a lot in this life. Just the 5 of us in the same state close enough to maintain our relationships. My heart is pounding out of my chest at this moment. I think I'm going to be sick.

She's a Pro

No, not in the major leagues(although with the strength and the spirit my youngest daughter was given she and her big brother could be drafted together and it wouldn't surprise us one little bit!), but at this whole surgery, procedure, biopsy thing. Not something most would aspire to be a professional at, but our sweet Ashley has become one.

This morning she sat in pre-op without a tear, not even one being shed from her eyes. She read her lady bug book, signed about all the crying babies and little girls surrounding her, and held tightly to her baseball. She signed "sad", "crying", "babies" and pointed to the sweet girls that were across from her. Not until the very moment the surgery nurse showed up with cap, mask, and scrubs on did a tear fall from her eyes. She signed for her to go "bye-bye" and shook her head no as I passed her off to the nurse. Then the tears stopped and she snuggled close into her chest with her head nestled under her chin just as she does to me. As they walked away from me, our baby, I mean our little girl, the professional, waved a tiny bye-bye to me and then disappeared through the OR doors.

She is now intubated and sleeping as they begin. Its 11:25 and I just received that information from the surgical staff.

Oh what I wouldn't give to have our little girl be a professional at toddling, at running, at skipping, at chattering, at hopping, at talking, at jumping. Just be so good at any one of those things that her daddy and I could sit back this Easter weekend and watch as she ran through the grass collecting Easter eggs or picking flowers. Or to have the privilege of listening to her chatter on and on about her basket, the chocolate, the bunny, or the surprises she found inside of it. To see her eyes light up as she came running out of her Sunday School classroom and presented us with a picture of an empty tomb, or of a shining Jesus that she had colored.

My little pro will wake up in an hour, eyes groggy, pony tail tussled, and will reach her tiny hands up toward me. When I pick her up she probably won't shed a single tear. She'll snuggle tightly into my chest and nestle her head under my chin. Then she'll point to the door and wave bye-bye letting me she did her job and now its time for me to take her back to her home. You know the one, the little yellow house where all those inside love her like no other and celebrate each and every moment of her life. That's the place. The place she'll want to go back to once she wakes up.

Guess what? I'll be wanting to back there too.

Here's hoping for NO phone calls to come our way the rest of the week. NO phone calls means she's fine and were going no where. NO phone calls mean she'll be celebrating the resurrection of Jesus with her big brother and big sister this Sunday in Texas. NO phone calls will mean her daddy and I can breathe a big sigh of relief and whisper our thanksgiving to the Father yet again.

Just Had To Show You

Our girl.

She loves her big brother. She loves to watch him hit in the cages. She loves baseballs and baseball games. She loves the batters circle(because she recognizes that its a circle) and never fails to point it out. She loves to sleep with a ball in hand, and some nights one each.

I can't help but grin each and every night as I kiss that beautiful forehead. It makes me giggle that our girl chooses to sleep with baseballs instead of baby dolls.

She makes Blake so proud.

Tough Questions

I never know when to expect them. They just stumble out of their mouths every now and then. Usually we are doing nothing special that relates to the question and I often wonder "what brought that on?" when they ask them. I imagine its just the burden they carry on their young hearts.

Sunday morning as I was fixing Allison's hair she said, "Mom, you know how babies go to heaven if they die? We believe that right?"

"Yes, thats what I believe."

"Then what happens if Ash dies?" she wondered out loud.

That came out of no where! I swallowed hard and said, "What do you mean what happens?"

"Do we believe that she will get to go to heaven? I mean she's not a baby anymore, but she can't understand who Jesus is. Will she go to heaven when she dies?"

I assured her that yes, I believe Ashley Kate would go on to heaven to be with Jesus if she were to die.

"Good, cause I don't think it would be fair if she didn't. She doesn't understand and she can't ask Jesus to come into her heart. She doesn't even talk."

Wow. I wondered how long her heart held onto that burden and how many days she had spent thinking of it. Or maybe it just popped into her head that morning as I adjusted her ponytail? Either way, I assured Allison that I believed that God was a just God. A who God is fair and who would never allow a person to die without having the opportunity to hear the gospel first. I told her about how His word tells us that nature itself points to Him. I hope I answered her question the right way. I had never really thought about it. I mean the part about her not being an infant anymore. I'm not sure my answer was Biblical. I'm not even sure it speaks to this matter in the Bible, but I know that Jesus did say to allow the children to come unto Him. I guess thats where my belief comes from. All I am sure of is that He loves her. More than I can comprehend, and in that moment my answer gave Allie the peace that she needed to move on about her day.

Such heavy thoughts.

Ashley Kate will be going in for her procedures in the morning. We are scheduled to check in at 9:30 and they have added an endoscopy onto the ileoscopy. Two separate procedures taking biopsies from both ends. They will go down her throat, into her esophagus and stomach looking for ulcerations or abnormalities caused from all the vomiting. Next they will scope into her small bowel entering through ileostomy. Again looking for abnormalities, ulcers, and suspicious areas. The biopsies will be sent out to Nebraska and then based on those results we will develop a plan. As far as I know there is nothing that can be done to stop the vomiting, but if there are ulcers then hopefully we will be able to treat them and make her more comfortable. The other answer that will come from the tissue samples is whether or not she is still in rejection. That part makes me sick to my stomach. A clear biopsy is what we need. I don't even want to consider what will happen if its not clear.

Ash is still struggling with nausea and fevers today. She hasn't vomited since 3 this morning, but is very nauseated. She feels weak and yucky and just not that happy. She is especially cuddly and if there is a good side to her not feeling well it would have to be that. She just wants to be rocked. I kind of enjoy that.

I'm hoping to be back home in time to pick up Blake from school. The surgeon's office said that was the plan anyway. That is if things go according to plan. Dave and Allison will be home late tomorrow evening. Blake and I are looking forward to that. I know their having a great time.

Enjoy your evening. I'm going to rock my gherkin till someone falls asleep. Not saying who I think that will be, but its going to be a close race. Take care my friends. Trish

"Daddy, I want...

...that...

...PLEASE!!!"

More often than not our little pickle will point, and reach, and then bat those little eyes at her daddy and "POOF" like magic whatever she has asked for just "magically" appears in those tiny hands.

She's figured out it works with Daddy, Blake, Allie, and sometimes even Mommy. She just too hard to resist. Especially on the good days. When her eyes sparkle they really sparkle and that grin melts each and every one of us. We love her like no other. She has captured the hearts of every one in this house and we have a really hard time saying no to our Ashley.

Saturday was a pretty good day for Ash. She enjoyed a morning at the soccer field watching Al's team win 7-0. Allie played fearlessly(she usually does) and scored 4 of those goals. We were so proud of her. Then we headed on over to Louisiana to watch Blake and the Tarheels play. After their two wins on Saturday they were seeded first in tournament play on Sunday. In the first game we were tied 4-4 in the final minutes of the game with runners on and Blake at the plate. He hit a hard line drive and the winning run crossed the plate. It was a great game. Two teams so evenly matched. It could of gone either way, but we were blessed to get to watch Blake come through in a tough situation and the Tarheels went on to the finals. We were completely out of pitching and the first 3 innings of the game were fought hard. Such tough play. In one inning all three hits came at Blake at short stop and he got to make the play for all 3 outs. That too was super exciting to watch as his parents. Dave and I were really proud of him. He was enjoying himself and getting to do what he does best. Play ball. Such a blessing. In the end though we were out pitched, out hit, and out played. The other team deserved the win and they earned it. So we walked away this weekend as the runners up.

This morning on the way to school it blessed my heart to listen to my son pray and thank the Lord for the opportunity play ball this weekend and the blessings of the wins. He prayed for protection for this week as he faces a scrimmage, a game, and three practices. I'm so thankful he knows what a gift God has given him.

Dave and Al left before 5 this morning for the fifth grade field trip to NASA. Allie was super excited as we packed for the adventure. I know she'll have a great time with her Dad. He was pretty excited to be going too. I'm missing them this morning knowing they won't be home tonight, but I'm so happy they get this time together.

Ash was supposed to be scheduled for a scope and biopsy today, but the call never came for a confirmed OR time. I'm working on figuring out what they want us to do. I'm pretty confident it won't be happening today since we aren't there, but this week I'm sure it will take place. She's still struggling with those unexplained fevers and lots of vomiting and coughing. I wouldn't say she's feeling great, but she's surviving. I'm looking forward to having some great days come her way. Like I said, Saturday was pretty good, but then on Sunday she wasn't so good. She spent the entire day in the RV and didn't come out to the fields one time. The weather wasn't very good yesterday so it worked out just fine. I hope she'll be able to keep her feedings down today without any vomiting. The last time she had an episode was around 3 this morning. She will be staying home this afternoon with her grandma while I go out to Blake's scrimmage game.

Its a busy week for the kids. That means its a busy week for me too:) My laundry piles are seriously out of control and I'm trying to tackle some this morning. Wish it were summertime and Blake could stay home to help!

Hope your week is blessed. Thats all thats going on in our part of the world. Take care my friends and have a great day. Trish

Evaluated

We went, they observed, she cried, they evaluated, she waved bye-bye, and now we wait.

That's basically what took place in the two hour meeting this morning. There were 3 different therapists all gathering information on Ash and writing their own notes about her. Each one of them tested her in their own areas of expertise and then they did a lot of watching and question asking. It wasn't as painful as Ashley Kate would've liked for us to believe, but it wasn't a whole lot of fun either. Just being honest.

At one point they asked me to speak in English when giving them Ash's history and that made me laugh a little. There have been times that I felt like that, but I guess I've been doing this with Ash for so long now that I tend to speak in medical terms when repeating her history and forget that not everyone is going to understand what I'm talking about. So like I said, that part made me laugh and I started all over and tried to speak in "English".

In the end we found ourselves in a dilemma. They have no idea where they will place Ash and what services they will use with her. In some ways they would like for her to be a home bound student(in which we kind of agree), but in other ways she needs to attend "school"(which we kind of agree with too). Legally though they have to label her as one or the other and their not sure what they want to do with her. She can't be both. At least they don't think she can. They've never had a student like Ash(no surprise to us. we've heard that about her in almost every doctor's office or evaluation that we have ever been in).

In a perfect world if we could all do what we would like we would attend "school" outside of the house for a couple of hours a week working one on one with speech and then physical therapists in their classrooms. Then we would bring in a teacher to supplement her education for 2-4 hours a week in our home. She would still receive private therapy with our physical therapist here at home and still be taught by me as well. This is what we would all like to happen. Realistically it probably won't. We will have to choose home bound or classroom which will leave her lacking in one of the areas.

Our main goal was to try and get Ashley into the signing education classes to supplement her signing lessons. Much to our surprise we were told she does not qualify for this class because she is not deaf. We were a little stunned and really disappointed to hear this. Ashley's only communication is through sign. Even though she can hear, she can not speak. We don't know if she ever will. Only time will tell. Unfortunately our school systems will not teach her sign language skills even though she needs them since she is a hearing child. I am disappointed, but I won't allow it to keep us from pursuing more help. If I have to take classes in ASL myself then that is what I will do. We will figure something out.

At the end of the two hours I think everyone was a little confused. No one really knows where she will fit in, but we are all going to work together to develop something for her. She is very intelligent and I do believe that they were able to see that this morning. That is an answer to prayer. When we arrived in the classroom Ashley looked around the room, pointed to a bulletin board across the room that had apples on it and signed apple. This literally happened in the first two minutes of the evaluation. From there she went on to sign bug and point across the room, then cup, drink, ball, train, etc. as she located the items in the room. I was very proud of her. Very, very proud that she did that.

Gaps. That's pretty much what was decided on this morning. Ashley's development has huge gaps in it. She knows a lot of things, but is missing other things. When you look at the big picture of her life I think that makes a lot of sense. Once we manage to help her fill in those gaps then she will be able to progress further in her development.

This part of our life hurts. I don't pretend that it doesn't because it just does. Plain and simple. The key is to not let the hurt keep us from equipping Ash with all that she needs to overcome. When the sun goes down, when the house becomes quiet, and the children are all safe in their beds we lay next to each other and share the hurts, share our tears, and pray a lot for our sweet Ashely Kate. She is an amazing kid. She brings such joy to our home.

Whatever it takes. That's what we have decided. No matter what. We will figure out what she needs and how to get it for her. Thank you from the bottom of my heart for praying us through today. It was emotional. It was hard. It was necessary. I love you guys for loving this little girl of ours. Thank you. Trish

Listening In...

...I know its not polite, but I couldn't help myself. Its got me giggling from the other room hoping he doesn't catch me enjoying this escapade as much as I am. Its just too funny.

Beep...Beep...Beep...Beep...Beep..."What is going on in here?" "Why is everything beeping?" "What did I do wrong?" over and over again I'm listening to these phrases from the other room. I hear him get up and almost make it to the door and then...Beep...Beep...Beep. I'm so cracking up!

The baby is crying, the daddy is too(not literally, but I can here the frustration mounting) and I'm laughing. Really, really hard.

When I left the room the baby was all tucked in her bed, holding a baseball tightly in one hand(I've tried baby dolls and its just not happening. The girl prefers a baseball and it makes her brother smile from ear to ear.) and rubbing her sleepy eyes with the other. All she needed was to be connected to her TPN and fluids and kissed goodnight. I prepared the TPN and handed it off to her dad to hook it up. Thats when all this nonsense started.

At first I heard her start to cry. A broken hearted cry. Somehow she had her heart broken and the crying was just too much. "What happened to her? What did you do to the baby? She was all ready for bed."

"I told her no. She's grinding her teeth and there going to break off!"

"You can't tell her no. It breaks her heart. What were you thinking?"

"Well, I did and now she's crying."

Then the beeping started and the baby was still crying and the daddy was frustrated and couldn't figure out how everything fell apart so quickly. Me? I'm still laughing and typing from the other room. He broke it...he's got to fix it. The baby and the infusion pump.

Goodnight guys. Tomorrow's the big day. I don't imagine I'll be sleeping much tonight. You know with the crying, the beeping, and the thoughts running through my head.

Chronic

I'll never forget the first time I over heard a member of one of Ashley Kate's medical teams use that term when referring to my daughter. It offended me. Kind of like the time they shared with us that she was officially "failure to thrive". Again, I was upset. Call me protective, blind, or just stupid, but I wasn't ready to have people say and record such ugly things about her. Guess what? I'm still not. Swallowing these words, accepting them, has proven to be one of the harder things I've had to do over the last few years. Chronic. I hate that word. Chronically ill. I hate that diagnosis even more.

Chronic. That's what it has become. Chronic vomiting. Its not normal. Its not something that happens occasionally with an upset stomach. Something inside of her causes vomiting. Chronic. Continuous. Violent. Damaging.

It can occur out of nowhere. She's fine one moment and then the next I glance at her and begin to run for towels, blankets, clothing, whatever I can find to try and catch the aftermath that I know is on its way. Its amazing how I can catch a glimpse of her face or a hear a certain cough and announce, "She's going to throw up, hurry". Then the whole house starts running trying to collect something, anything to help with it all.

This whole vomit issue is a mess. Literally. It has destroyed her teeth. The content and acids from her stomach have eaten cavities into her teeth. They are ruined. Honestly, they are. She has a dental appointment one month from today. I have no idea if they can do anything to help, but we have to have the cavities dealt with before they start an infection we can't recover from. I see the damage to her teeth and I wonder what her inside look like. Her throat? Her esophagus? Her stomach? Her intestine? I know damage is being done. She screams before and after each emesis. She cries hard from the pain. She signs "hurt" over and over again. Its happening each and every day. Multiple times a day. Its happening all throughout the night. Multiple times. This morning between 4-5 am she vomited more times than I could count. Her daddy announced around 4:30am "Something has got to be done. She can't live like this!" I agree. She shouldn't have to.

I've tried to get a scope and biopsy scheduled today. No luck. The earliest they will see her is April 20th. That's not soon enough. They told me our transplant team could always call and speak to the doctor themselves. "Ok, thats exactly what we will do. I'll let them know." So tomorrow I will call the coordinator and let them know they refused to help us any sooner. Oh, did I mention they aren't saying they will scope her? They said they will bump her May 1st appointment to April 20th and then decide if they agree she needs a scope. Hmmm... that just doens't work for me. Yesterday I was assured by our transplant coordinator that a scope was necessary, the surgeons were recommending it, nothing could be determined to help Ash until one was performed.

Honestly, it has got to get easier at some point. Omaha, Nebraska isn't a mere 2 hour drive. Its a 14 hour drive. Not really condusive to scheduling our appointments there. I'm so tempted to try and switch back to our old team in Dallas. We were trying to make life a little easier by getting a team closer to home, but I don't know what to do when your first "line of defense" in a bowel transplant patient is the GI doctor and he doesn't want to see her. This isn't the first time its happened. Its happened multiple times. We need a pediatric GI specialist who is willing to take on a transplant patient and who actually has time to do scopes and biopsies when they are needed not when they are convenient. If you know of one PLEASE send me a message. We need help.

We are asking everyone we know to pray about this vomiting. It has to stop. We are one inhale away from life threatening issues. It is so dangerous, so stressful, so difficult. Please join us as we ask the Father to change this for her. All we can do is ask. It doesn't mean He will, but we're asking anyway.

Some of you have guessed that I'm having a hard week. Yep, your right. Its all related to this new evaluation coming up this Friday. I wish I could say that I have accepted all the issues Ashley faces, but I haven't. When dreams die it hurts. Plain and simple. Figuring out what new dreams I need to be dreaming for my daughter is difficult. There are lots of "big pills" coming our way and I'm afraid that swallowing them is going to be even harder than those words "chronic and failure to thrive" have been. Just issues I'm constantly trying to work my way through as her mom. Along with all of these issues comes the internal tug of war between my deep felt gratitude for what she has, is and has been blessed with, and the longing that remains for a "normal" life for her. I'll try and explain this last paragraph in another post in coming days. Just wanted you to know that I appreciate those of you who are reading through the lines and praying for the grace we need to make through till Friday.

Also wanted to let you know that she signed the word, "Mommy" today for the very first time! Next to the first day I actually heard her say that word it was one of the sweetest moments of my life. I knew she knew the word, she was just too stubborn to use it. Today, she did. She signed, "Mommy, bye-bye". It made tears sting my eyes and a smile cross my lips. I love this girl and I love being her mommy.