Ashley's Story

She will leave fingerprints all over your heart

9/29/2008

Reflections

Ash and I were on the run for most of the day. She love, love, loves to go "bye, bye". As soon as I say were going she begins to clap and reach for me to pick her up. The moment we step outside the door she giggles all the way to the car. She does this every single time we leave the house. That in its self is absolutely precious to me, but its what I see each day as we are in the car that touches my heart.

My rear view mirror holds the most beautiful reflections. I glance at it and find her face. Sparkly eyes, rosy cheeks, and gorgeous smile. She spends a good deal of our driving time staring out her window. I have no idea what brings them on, but the smiles. Oh...my...goodness the smiles she shares with me. This child absolutely melts me every single day. I love hanging out with her. She is the happiest baby! No matter where we go or what we have to do she just plays and giggles the whole way there. She loves for me to roll down her window. The wind blows her hair and causes her to squeal in delight. Her little eyes sparkle with excitement. She is so much fun! I roll it up and down and up down just because she loves it so much. My heart is so full of thanksgiving as I watch the joy she gets from such simple things. I make mental notes each day to never forget the way she looks in that mirror. Her little face is changing every day. She is growing and maturing with every single day that passes. Her hair is getting thick and starting to grow. Her face is thinning out and her expressions are so, so sweet. Its like I'm peeking into her world. She has no idea I'm watching her. I pray for her as I stare and I thank God for giving me this child. I can't imagine who I would be without her.

We got a lot of the errands done today for Blake's birthday. We were so blessed to stumble upon a clearance sale when purchasing the necessary water guns to pull off this party. Super Soakers for $3!!! Ash and I both squeeled as we loaded our basket to the top! I know the clerk thought we were crazy when we unloaded them all onto the counter. She has no idea how happy it will make those boys to be able to "drench" the opposing team! Tomorrow we will make an early morning run to Home Depot and then come home to finish our painting before time to pick up the kids and make the runs to ball practice. Wednesday we will pick up the main items of Blake's birthday surprise during Dave's lunch hour and by the evening while Blake is at youth group and Allie is at soccer practice we should load them in and complete the finishing touches. Thursday I will concentrate on the buying of the groceries that it will take to feed 30 12 and 13 year old kids during the party. Friday we will spend the day setting up the command posts, the refill stations, the ammo drops, the mess hall, and filling those water balloons(the amount has increased from 500 to 1000!). Then we will spend the evening running through the woods snapping pictures and taking video to capture the whole event. I can hardly wait!


Although I'm tired I can't help but feel so blessed. Life is wonderful at our house. Its just fun. God is good and we are grateful. Ash is home and she is happy. I couldn't ask for anything more.

The Busiest Ever!

We're off to a late start on one of the busiest weeks we have ever had! Unbelievably the alarm wasn't heard this morning and so our tiny pickle woke around 7:40 and thankfully was heard over the monitor alerting us all to the fact that we had overslept. Dave and the kids jumped out of bed and took off for school and the office and the pickle...well her diaper was changed and by the time I came back in to pick her up from throwing it away was sleeping with her little hands tucked behind her head. Guess she figured she did her job and didn't need to stay awake.

Anyway, Blake will be turning 13 this Thursday. That is even more unbelievable! We are planning a huge birthday surprise here at the house that can only be worked on during the day and late at night while he is sleeping so that we don't alert him as to what is coming his way. Needless to say its a little difficult hiding such a huge surprise from him and even more difficult working on it while I am taking care of Ashley Kate. Our hope is to have it completed some time Wednesday evening and allow him to walk out to find it Thursday morning before he leaves for school. If we don't finish it then I suppose it could wait until Thursday evening, but he won't be home until after 8pm. He would go the entire day thinking we were doing nothing for his birthday. Then Friday evening we are hosting the ULTIMATE game of capture the flag in the woods at his grandparents house(I get to fill 500 water balloons by 5pm on Friday). The party is scheduled to end around 9pm and then we will be leaving that night( I assume by midnight) to his baseball tournament.

On top of all the birthday plans Allie is going to be playing as a guest player with another soccer team in a tournament in two weeks. In order to do this we will be adding 2 more soccer practices to her weekly schedule. This makes for a total of 5 soccer practices, 2 soccer games, 2 baseball practices, 2 Tae Kwon Do classes, physical therapy, riding therapy, a huge birthday party, and a baseball tournament all in 1 week. Oh yeah, and the completion of the birthday gift. Whew. I'm tired and its only 9am on Monday. Dave will be working late most nights this week giving and preparing for lectures in the community. He will be available to help during a few of his lunch hours. All of our normal helpers with Ash are out of town(our mom's and his grandma) so his dad is jumping in to help run the kids on the nights that their schedules over lap each other(most nights this week!).

I'm so excited about Blake's birthday. I just know he's going to love what we have planned. I can't think of a more deserving kid than our son to have such a huge surprise awaiting him. Ashley Kate and I have missed his last two birthdays and he has had to give up those two birthday parties. She was transplanted in 2006 just 6 days before he turned 11 and then went into rejection 10 days before he turned 12. He never complained, never made me feel as though he was missing out on anything, never said a word about it either year. His only concern was Ash. He is an absolute joy to parent and has been since the day he was born. I love him so much and can't wait to see the look on his face.

Well, Ash and I are off to begin the taping (did I mention I have to completely paint a room for this surprise?) and to get started while the kids are in school. We only have a few hours before the running begins so we better make good use of our time.

Have I told you how much I LOVE living at home? We are so,so blessed. Have a great week. Trish

9/26/2008

Although we've never met...

...I feel as though I must write to you. Something is leading me to share my thoughts with you here. Maybe, just maybe someday you will stumble across them and know that I have not forgotten. That I will never forget.

This date, Sept. 26th, means a lot to us both. Its the anniversary. I know you haven't forgotten this day. Its because of this that I just can't shake this leading I feel to write to you again.

I'll start by saying Thank You. How small those words sound, but yet how huge they are when I pull them from my heart. Not a day, not a single morning goes by that I don't think of you and pray for you. As I scoop her up into my arms, I remember that your arms had to let go of your child. As her sleepy eyes twinkle at me in the early morning hours, I remember that its been two long years since you looked into your child's eyes. As she smiles at me, I remember that its been so long since you last saw that same smile. Please know how sorry I am for your loss, and how grateful, how eternally grateful I will forever be that you thought of me on that day.

I just wanted to thank you for allowing us to hang on to our baby. I wanted to thank you for allowing us wake up every day for the past two years and touch her face, hold her hand, and smell her hair. I wanted to thank you for being willing to be used by our Father in such a selfless way.

I wish you could see her. I wish you could have the opportunity to see how her eyes sparkle. I wish you could hear her giggle. I wish there were a way for you to know what a difference you made in our lives. I don't know if it would bring you comfort or pain, but I pray that it would somehow bring peace to your heart to know that your gift has done so very much for her.

Ashley is 3 years old now and she is finally home. She has fought so hard and come so far. I know you would be proud. We make every day count. We allow her to experience new things, go new places, and live. She has been to the top of the mountains and looked across the tree tops. She has felt the warm sand of the beach underneath her toes. She has been to the ocean and watched the sea gulls. She has seen a majestic waterfall and was mesmerized by the sound. She has dipped her toes into the hot springs in Colorado as she sat surrounded by the most beautiful mountains. She has walked along the banks of a river as her daddy carried her in his arms. She has felt the rain drip onto her hands. She has closed her eyes tight as the wind rushed across her face. She has been to a baseball game. She has ridden a horse. She has snuggled up close to her big brother as they napped on the couch. She has giggled with her big sister as they played together on the floor. She has felt the kiss of her mommy on her forehead while she slept. She has taught us to live, to be content, to be happy. She has shown me that the God I believed in and thought I knew was so much more than I had even allowed myself to imagine. She has helped so many believe in miracles. She has been an example. She had done all of these things and still has so much more to do.

When I say thank you, I truly mean it. Without your presence in our lives she would no longer be. You mean so very much to this family, and you are loved.

As I celebrate her 2 year anniversary tonight, I realize your 2 year anniversary is not a celebration. My heart aches for you and I'm praying for you tonight. Thank you from the depths of my heart.

Still Remembering, 2 years later



Two years ago this very minute our phone rang as we were loading Blake and Allie in the car for school. That phone called changed her life and ours. This morning we remember the little life that was lost the morning our little one's was saved. Happy 2 year Anniversary baby gherkin!

9/24/2008

We're Having Issues

Lots of them.

Mostly with the computer which doesn't want to allow me to be on line for more than a minute or two. I can type pretty fast, but not fast enough to write a post in those two minutes.

Some issues we are having in other areas. Areas like...her glasses!

There supposed to be on her face helping her little eyes to see. Yeah right! They stay on her face as long as mommy or daddy are sitting in front of her keeping her hands off of them, but the minute we step out of the room you can hear them sliding(lenses down of course!) across the hard wood floors. I'm telling you if I step foot into that optical center one more time with her glasses they are going to take that warranty, tear it into little pieces, and throw it AND me out the door. They had NO idea who they were offering a years warranty to!

Another area? Therapy. She doesn't want to "play" our little game. Learn to crawl? What for she wonders. Stand on her own two feet? Why in the world would she want to do that when she has a mom to carry her around from place to place. After all that is her job, right? Oh, she's moving across the floor and making progress in that area except that her method of movement is the most unconventional method you have ever seen. It is not going to lead to crawling, let alone walking. It basically scoots her little self anywhere she wants to go in the family room so that she might get into trouble by pulling things off the table, or rocking large, glass pumpkins against the tiles on the fire place.

One more area? Lets just say when she's done, she's done. With her food that is. She can slap a spoon full of food out of my hands faster than I can see it coming and what a mess she leaves me to clean up. If it didn't have that element of surprise then I might not laugh at her and make her feel as though I'm encouraging this behavior, but you try not to laugh with peas and brown rice on your glasses and hers! This child is such a mess!

My biggest Issue as of late? I just love her more and more and more. Flash those twinkly eyes and that big smile at me and I melt. Clap those tiny hands at her own accomplishments whether they be naughty or not and I can't help but applaud too. I love her so much and she is the cutest thing around. I'm really struggling with discipline and correction where she's concerned. After all she is 3 and she is as ornery as can be. You would think some of this behaviour would warrant a "no, no" every now and then , but she cries the biggest, wettest tears you have ever seen every time I say those words to her. She shakes her head no, no and spanks her own hand and it absolutely breaks my heart, her daddy's, and Blake and Allie's too. None of us are any good when it comes to correcting Ashley Kate. Last week, Dave actually cried more tears than she did as he attempted to correct her. All I could do was laugh as he held her and wiped the tears from her cheeks and his eyes. He looked up at me and said, "I can't do this." Honestly, I had to laugh out loud. I'm telling you we're having issues.

Speaking of issues...guess who has pulled off another ostomy bag tonight? Yep, thats right. I' ve gotta go clean up the pickle and the "pickle" she's gotten herself into. Take care my friends. Trish

9/23/2008

The last couple of days

...Ash has been struggling in a couple of areas over the last couple of days. In the grand scheme of her life these struggles are small, but still irritating and painful. She's been fussy and not too cooperative. Her ostomy site is inflamed and causing her great discomfort. She just can't seem to leave her bag alone and because of this we have discovered her covered in stool and blood for the last 3 nights. Two of those three nights it has been changed twice. Tonight we have already changed it once and from the sounds of it we will be doing it again very soon. I hate this for her. The more inflamed it gets, the more she pulls it off, and the more it has to be changed which in turn cause it to become more inflamed. Its an awful cycle and not one that much can be done about. The other issue is her mic-key button. It too is inflamed and has a large amount of what is called granulation tissue that has grown around it. Ordinarily when this occurs we use a wand of silver nitrate to burn the tissue off, but this time its different. The tissue hasn't formed around the button, but rather inside the hole in her tummy that the button is inserted into. We don't really know how to handle it this time. It looks as though the button needs to be removed in order to reach the tissue and burn it, but then the button would have to be re-inserted and this would push some of the silver nitrate into her stomach and the burning of that tissue would not be good. We brought it up with two of her doctors and they both just told us to burn the tissue, but I don't feel as though the really understand where it is located. I get the impression they think it is just around the button on the exterior of her tummy. Neither of them have taken the time to look at it so were kind of stuck. The button is very, very painful and connecting her feeding tube each night sends her into a screaming fit. I can tell it is causing her great discomfort and I don't really know how to remedy it for her.

In addition to these issues her feeding schedule has been thrown off. She didn't feel like eating much on Monday(I have no idea why) which caused us to increase her time on her feeding pump so she didn't lose to many calories, but the extended time on the pump caused her not to be hungry today. I again had to increase the feeding time on the pump tonight which is going to cause us more trouble with eating tomorrow. I need to allow her to get hungry enough to want to eat her calories by mouth, but I am afraid of her getting dehydrated and not nourished enough on that day. An ugly cycle.

On the brighter side of things Ashley and her daddy made a guest appearance at the East Texas Angel Network fund raiser tonight. That was an honor. Neal McCoy and his Angel Network are amazing. They have incredible hearts and they give so much to the chronically ill children here in east Texas. We are so honored to be a part of his group. If you have the opportunity to attend his fundraising concert this weekend then I encourage to go. You will have a wonderful time and on top of that you will be supporting an awesome group of people. Neal McCoy and his family and friends have huge hearts and we are so grateful to them and their organization. They have been there for us during some of our hardest of times in the past few years and have loved Ashley Kate from the start. It was fun for Dave to appear with Ash on his hip and allow them to see how far she has come. Last year Dave spoke for the Angel Network while Ashley and I were in the PICU as she fought for her life. I know having Ashley there with him tonight was a huge blessing. God has been so good to our family.

Ash has PT tomorrow and will attempt to ride again on Friday. In all honesty I have been too embarrassed to talk much about last Friday's riding lesson. Let's just say she was less than cooperative and not real excited about getting back on Hope. I told Dave I wouldn't be surprised if they told us "Thanks, but no thanks" after her un cooperative spirit last week. She spent the entire lesson screaming as she lay on her back on top of the horse. At one point we could hear the therapists singing the songs from Blue's Clues in an attempt to calm her down. We had to laugh at that because...well... it was just funny to see 3 grown women trying to remember the words to "We just got a letter" as they managed our screaming toddler on top of a horse. Anyway, were hoping for a better session this week.

We are busy planning a small celebration for Ash's 2 year transplant celebration Friday and Blake's 13th birthday party for next Friday. If you haven't figured it out by now I LOVE to plan parties for our kids. Nothing makes me happier than to have a few hundred lists scattered all over the table in anticipation of one of their birthdays. Too bad Blake won't allow me to scatter pink all over the place. Instead he has decided on a party in the woods at his grandparents and a competitive game of capture the flag with all of his friends. I know it will be great fun, but a few pink balloons in the trees might be festive don't you think? Oh, well...its his party.

I guess I should jump in bed. The rest of the house is quiet and I think I'll take this opportunity to close my eyes before the pickle pulls off that bag. Goodnight guys. Hope your day was blessed. Trish

9/22/2008

Recovering

I sat this weekend and looked around the room. My eyes landed on the couch across from me where our 13 year old(his birthday is next week! Yikes, a teenager!) and our 10 year old sat cuddled under a blanket playing a game and giggling together. Then I saw our 3 year old playing with a basket of toys in the middle of the floor. Next I looked at Dave and watched as he worked at the other end of the couch we were sharing and I thought to myself, "We've recovered."

It's taken a lot of time and a lot of tears, but I think we've done it. We're not as afraid as we once were. I don't think we live in fear of life being turned upside down at any moment any more. I'm almost sure that the whole process has brought us closer. Closer than we could of ever been without it all. Life is just precious and the mundane tasks of it almost seem as though we have been granted a second chance. We are very, very happy and even more than that we are grateful.

3 years ago last month our tiny pickle was born. 2 years ago this weekend she was handed over to a surgeon we didn't know and her life was placed in her skilled hands as God orchestrated what would surely become her second chance. 1 year ago this week as we began to relax our little one became very, very ill literally over night and what we thought was behind us began all over again as she fought to live and to breathe and to survive. I approach this week, this anniversary, this day with more and more gratitude as each moment passes and she continues to laugh and play in front of me. I think we've done it. I really do. I feel more joy this week then fear. I think that's a level of recovery for me.

I believe the children are more confident that she is home for good. I know they understand that it could change on any given day, but they no longer fear that it is going to be today. They love her so very much and I watch them with that baby sister they waited for their whole lives for and my heart is so blessed. She can put a smile on our Blake's face faster than anything these days. He never fails to stop and tickle her as he walks through the room. They giggle at each other and then go on their way. Allie loves taking care of her. Combing her hair, picking out her clothes, getting her ready for bed are her favorite tasks. You rarely ever find Allie sitting on the couch without Ashley Kate on her lap.

We've been home a full 6 months. We were home a full 6 months last year at this time when she rejected her small bowel and we had to go back, but this year its different. I'm no longer naive, but I'm no longer afraid. I have a hard time explaining the place I find myself in this morning. I'm listening to her play in the nursery right now and a smile has crossed my face as I type.

This week holds a lot of memories for us. Some good, some bad. There are those moments that I remember where we were so very frightened we would never hold her again and then their are those moments where we tiptoed into the room to peek at her for the first time with her new organs at work. Bitter and sweet. We rejoiced as others mourned. We had hope and theirs was gone. There are those moments when the peace that the Father gives washed over us as we held her tiny hands and we could do nothing but trust He was at work in her little body as we sat helpless to make her better. So many memories, so many feelings flood across me.

Recovery. It takes a while. It took Ash months and months to recover. Each illness. Each insult to her body. She fought and never gave up. On the days that I felt I would never recover from all we were going through I would look at this tiny example He had handed to me and I kept trying. Giving up was not an option. She never did, and if she could recover so could my heart.

Our home, our business, our family, our daughter. It wasn't easy, but it was worth it. All have recovered and we thank God for that recovery each day. He was with us each step of the way and He still is.

Today I find myself looking forward to the week ahead. I thought I would be dreading it, but I'm excited about getting past the upcoming dates and making new memories. Memories of celebrations to replace the memories of separations.

Take care. Trish

9/18/2008

My sweet girl

If you had been in our home yesterday you would have wondered "where did she go". That sweet baby girl was missing. Instead she had been replaced by a very grumpy impersonator who tried to convince us she belonged here. Well, I've got news for that intruder...we don't take kindly to grumpy attitudes that want to hang around all...day...long!

Little did she know when she woke up this morning that I was going to refuse any of that behavior. I'm not sure what her little "problem" was, but its not welcome today. I've made it my mission to see her laugh and play and giggle for this day. Wish me luck!

Hope yours is full of fun and laughter too. Have a great one. Trish

9/16/2008

By the Way...

Pair number one was picked up at 1:30 this afternoon from being repaired.

By 4:00 they were ruined! Again!

I am about $300.00 deep into these first two pair because I was convinced to have a new, scratch proof, and different style of lens put in them that cost an additional $40.00 per pair. Yeah, right! I looked at her in my rear view mirror while I was driving to the school this afternoon and she was scraping them across her bottom row of teeth! I couldn't get pulled over fast enough to stop her. Our "new" lenses are ruined. Guess they will be seeing us again tomorrow at the optical store.

We will have them fixed, again, and tomorrow I will be ordering several, cheap, not as cute, pairs off of the internet(thanks for all the websites) to be worn at home and will be saving her "good" ones for when she is out and about.

She is a mess!!!

Its the Little things


Oh, how we have learned to appreciate and celebrate the little things in this life. Since our Ashley has been born Dave and I have gotten such joy out of the every day, take for granted, kind of things that most people would never even notice.

Just today as Dave was unbuckling Ashley's seatbelt he said, "I love that she knows how to do that." I smiled because without turning around I knew exactly what he was talking about because every single day I stop and appreciate that exact same thing. All she was doing was transferring what was in her right hand to her left so that she could slip that hand under the belt and then back again so that her left could be slipped out of it also. I know you must be thinking how trivial that is, but you truly have no idea how BIG it is to us. She also knows which side of a picture to look at and if you hand it to her upside down and backward she will examine it, turn it over and turn it right side up. We love that she knows that! Its those little things that we see in her that tells us how intelligent she truly is. Its those little things that show us she is inside there, thinking, learning, and figuring this life out each day. Its knowing that if she points to the door that the outside world is there waiting for her to go "bye, bye". Its knowing that the little gray remote is the key to getting Blue to come on. She will move "mountains" to get a hold of that thing. Its remembering where every single lift a flap piece is in every single one of her books. Its knowing that if she rubs her hand across a page then she will eventually figure out if there is a different texture just waiting for her to discover. Its knowing that when its time to get dressed one arm goes first and then the other.

Her daddy likes to say she's a "thing knower". Ask him to explain that and he will say "she just knows things".

They all want to label her. They all want to place her in a neat little box and tell us what she "has" or "doesn't" have. We aren't interested. Why in the world would we limit this child? Ashley Kate is Ashley Kate. She is who she is and we happen to think she's wonderful. Yep, at 3 years old I still have to carry as if she were an infant. Yep, at 3 years old I still have to feed her every bite she consumes. Yep, at 3 years old I am changing diapers. Yep, I may be doing all of those things for her for years to come, but guess what? Its o.k. I know Ashley doesn't talk. I know Ashley doesn't know how to tell you what she is thinking. I know Ashley doesn't have the ability to express herself to all of those around her. I know Ashley may not do a lot of things the other kids her age do, but Ashley IS a "thing knower" and there is not one thing that she learns that we do not celebrate or appreciate. Tonight I want to share with you a little piece of something that gives us hope, that renews our faith in her abilities, and that she has been working really, really hard to learn. You might hear her fuss and complain. You might see her wobble to and fro, but look past all of that and focus on the accomplishment. She worked so hard to get here and Dave, Blake, Al, and I are more than proud of her. So here it is...just one of those "little" things that happens to be a really "big" thing to us. Enjoy!

video

9/15/2008

2 Down, Now what do we do?


So this is pair number two of Ashley Kate's new glasses. The have a different shape to them and the metal is pink rather than mocha. Its hard to tell in this photo, but they are pink. In less than one week she has managed to damage not one but both pairs of her glasses. The first pair are at the optical store being remade, this pair is temporarily being used but will make its trip to be repaired tomorrow when we pick up the first pair.

Hmm... she's 3. She's ornery. She's a mess. How are we supposed to make her glasses stay in one piece for longer than a week? Any suggestions?

I came of the restroom this morning and found this pink pair in the nursery floor across from our Ashley with a 90 degree angle in the right ear piece. How in the world did she manage this? After inspecting them I conclude that she used her teeth. There are tiny little grooves on both ear pieces that fit the shape and width of her teeth that told on her. The paint is missing and the ear pieces have permanent impressions in them. I bent the metal back to its proper shape but there is now a crack in them. So I explained all of this to the optical shop and biting and bending will be covered under our warranty plan. I just smiled, said thank you and let them know we would probably be on a first name basis by the end of the year.

OH Ashley, you are a mess!

9/14/2008

Still a Miracle

Her daddy just leaned over and kissed her on the cheek, touched the top of her head and said, "Its still a miracle. A miracle to see her here, sitting in our floor, watching her play, and loving Blue."

Funny to here him say those words. The exact same words I found myself thinking this afternoon as I sat quietly on the couch and just watched her move around the room. "Still a miracle" is what I thought to myself. She was in her own world, unaware that I was even in the room, doing her own thing. She a had toy lipstick tube in her hand. She would throw it across the floor and then scoot, push, and lean as far as she could to pick it up so she could throw it again. She would repeat her actions, scooting, pushing, and leaning until she had made it close enough to pick it up again and then throw it even farther. I love to watch her. It makes my heart so very happy to see her "figure" life out without any help from me. Every day she pushes her little self farther and farther and it is still a miracle. 3 years later its still a miracle.

Its been a slow, relaxing weekend. Not much happening. Not much on our to do lists.

Ashley's GI appointment went well. We're not going to doing anything at this time about her bloody stools. We have opted to just keep an eye on them and see if they improve. The least invasive we can be the better. She has grown so much this summer. She is 35" long and weighs about 30 pounds. He doesn't want to see for 6 months unless there is a problem. I love that! When they say not to come back for 6 months then things are going well.

Her schedule is lighter this week. Therapy on Wednesday and riding on Friday. Outside of attending Blake and Al's games and practices we should just sit tight and not do too much of anything except the norm. Its going to be a good week.

I hope your all well. I hope my fellow Texans have survived the storm with little damage, and I hope to talk to you all soon. Goodnight and God bless. Trish

9/13/2008

One down, one to Go

It only took 5 days(actually thats about 4 days longer than I expected).

Pair number one is down and ready to go in for repair.

Pair number two is coming out of its case and is ready to be worn. How long they will last is anyone's guess.

Its times like this that I am thankful for extended warranties. It shouldn't cost us a dime.

Stay tuned.

9/11/2008

Her Eyes

I've made no secret about the surprise that came when we were told Monday morning that Ashley Kate would need to wear glasses. Thats exactly what it was...a surprise. I went into her eye appointment just to follow up with her surgeon since he hadn't seen Ash since last August just a few weeks before we landed back at the transplant center. I thought I would hear a new plan to attempt patching her stronger eye to strengthen her weaker one, but thats about all I expected. What we were told was a little shocking and now we are adjusting to life with a three year old who needs her glasses.

Ashley does need to wear her glasses all the time. If she is awake then her glasses need to be on her eyes. We were informed that her optic nerve in both eyes had suffered some type of damage. On a scale of 1to 4 her eyes are about a 2. Not healthy but not completely damaged. There is no way to repair the optic nerve. Many people go on to see 20/20 with damaged nerves once they have corrective lenses. What Ashley can and can't see is hard to know because she doesn't speak and can't tell us. When I asked what would have caused the damage I was told that extremely high or low blood pressures, lack of oxygen or cardiac arrest could have contributed. Ashley Kate has experienced all of those in last year to year and a half. Shocking? Yes. We were also told that her eyes, both of them, have a severe astigmatism and that is the main reason she needs to use her glasses. This is more than likely an inherited issue. Up until Monday mornings appointment the only issues we were aware of with Ash's eyes were the strabismus issues we have been addressing and correcting her entire life(due to her prematurity) with patching and surgery. We also discussed the need for another corrective surgery on her eye muscles to be done in the next few months. Ugh! It proved to be a very overwhelming appointment.

But... I would like to say how PROUD we are of her, and I know you are going to be just as proud. She has been amazing!!! Yesterday she wore those glasses for about 8 hours. I said 8! Today? Even longer. She is doing an amazing job! Oh, I have to be on my toes constantly because when I'm not looking she takes them off and throws them in less than 2.5 seconds, but I put them right back on and we go for another hour or so. I am in total shock that this child, our Ashley, ornery as she is, is cooperating with her glasses. Proud doesn't even do my feelings about it justice.

Her eyes have always been my very favorite part of her. You can see her spirit though them. They sparkle with joy when she is happy and they speak to me when she is sad. On the harder days in her life they have shared with me her pain and confusion and on the happier days of her life they have literally sung with joy. Its her eyes that I could stare into for hours on end and never grow tired. Her eyes are so much of who she is and peering at them through her tiny glasses does not change that for me.

Yesterday a stranger approached and said to me, "If that sweet baby has to wear those glasses then I am glad you chose the cutes one for her! Spare no expense!" That made me giggle because our eye doctor said not to spend much money on them because she would go through several, several pairs(we opted to buy a great warranty on them because we know her and all she is capable of). Our choices were pretty limited, but I think the ones we finally ended up with are fairly cute. I think she makes them cute. They look much better when her eyes, whether they be full of tears or full of joy, are behind them.

Her eyes are a gift. I know that they are. Although they may not be perfect, they are beautiful to this mommy and I am so very grateful she has them. If we have to endure patches, glasses, and surgeries in order to make them the very best they can be for her then so be it. There is nothing I would not do to give her the best life we possibly can.

Thank you so very much for your kind words. Your excitement over her glasses has made this whole experience fun. What began as a difficult week is ending as a wonderful one and much of that is a direct result of your encouragement and prayers. I am forever grateful for your love for our daughter. Thank you again. Goodnight and God bless. Trish

P.S.
Tomorrow she will see her GI doctor. She has been struggling with quite a bit of bleeding in her diapers over the last week and we will discuss this issue and make a plan for how we should address it. I am hoping it is normal, although I fear it is not. Your prayers are appreciated.

9/10/2008

Ride 'em Cowgirl

video


Here she is. Can you believe it? It brought tears to our eyes. To know that our little girl who lay fighting for life day after day, week after week, and month after month is now riding a horse brings me to my knees! How amazing is our God? Just watch and see.

Ashley Kate did so much better than I ever dreamed she would. She actually enjoyed herself. She never cried. She was never scared. She even went from her grandma's arms to the therapist without a tear! That was a first. The session was so amazing to watch. We couldn't help but feel blessed. Blessed to have this opportunity. Blessed to have Sue as our therapist who could make this possible for Ash. Blessed to live so close to this amazing place. Blessed to have Ash.

We are hoping for big things. I have no idea if we will get them or not, but are going to give it a try. We have heard so many encouraging stories, so many miracles, so many uplifting experiences that have come from this type of therapy. I pray this is our answer too. I pray this will work for our Ashley. If it doesn't produce speech or movement for our little pickle, then I will at least have the blessing of knowing that she enjoyed herself and had the opportunity to experience it.

Can you even believe that the name of her horse just happened to be...HOPE.

So perfect. That is exactly what today has given us. HOPE.

Enjoy the show. Love, Trish

9/09/2008

You Gotta Love this Girl!

There is no getting around it! Just look at her first attempt at putting on her own glasses tonight. She wanted to watch Blue and so we told her she had to put her glasses on. She protested. She cried for a while. She pointed over and over again to the T.V. trying to convince us to just turn it on, but we all stood firm and this is what happened. I LOVE this picture! We laughed and laughed at this child as she "wore" her glasses just long enough to watch her show.




This photo is another one of my favorites of the day. Allie got her ready for bed, put her jammies on her and didn't even lose the glasses during the whole process. Again, she was watching Blue, but we've decided that if it works for therapy then it can work for her glasses too. She successfully left them n her face for two thirty minute periods this evening. We are so proud!

I took Ash in to see her eye surgeon for a check up. I expected to be told she needed more patching to strengthen her eye muscles, but I didn't expect the whole glasses issue to come up. In her past visits we had been told that glasses would not help to correct any of her eye issues. I just never gave it a second thought. When he wrote the script and told me she had to be patched for 15 hours a week I thought, "yeah, right. He has no idea what he is asking." He proceeded to tell me I needed to not "baby" Ash anymore and just make her do these things. I sat stunned. If only it were a case of "babying" our daughter. If only it were that she had been spoiled. If only I had been a lazy parent or a "bad" parent. If only. Yesterday was hard. Not because she needed glasses, but because I was not sure her mind has the ability to comprehend and accept these things. She looks 3. In a lot of ways she acts 3. Her brain is not quite 3. You have no idea how painful it is for me to type that. To admit that. To share that. It was going to take so much more than "tough parenting and putting my foot down". On top of all of that I was informed that she would need another eye correction surgery in a few months. Some days its overwhelming. That is why I shed a few tears last night.

Today on the other hand has been nothing but fun! She is adorable(in our eyes). The kids response to her was amazing. They think she is "so CUTE"! They have worked with her, encouraged her and cheered for her all afternoon. Ash doesn't like those stinkin glasses one little bit, but she is willing to wear them in order to watch her show and that is cracking us up. It makes me want to tell all those doctors who want to remind us that her mental ability is not what it should be to think again. They have no idea who she is and what she does and doesn't know.

Anyway, we love her more than ever and continue to praise God for her life. We are so blessed.

You Guessed It!

After I ruled out all the early guesses you guys quickly got on the right path. Look what we did to our baby gherkin today:

As you can see from this first picture, its been rough. She isn't happy about this whole thing. She screamed and cried the whole time we were picking them out. Several people in the store were wishing we would learn to parent and enforce a little discipline for the fits, but they have no idea what this child has been through. On top of that Ashley's mind doesn't comprehend what we are trying to accomplish so of course she revolts and protests. The professional was almost in tears and didn't quite know what to do. I felt bad for her, but Dave insisted that she toughen up and just keep on keeping on. I giggled as I felt the entire store staring our way. Oh well.




For a few minutes this afternoon Allie convinced her to wear them, but I assure you it was short lived. I snapped this picture as fast as I could. The look on her face is absolute disguist! She is so mad at me for putting those silly things on her face.




This last picture is where I will stop. She has had enough of it all and at this moment she sits in the middle of the floor complaining and cursing those glasses that are no longer on her face but next to her on the rug. I think we will have a battle of the wills going on for quite sometime.
I'll share more pictures of her later in her other pair(she got 2. One pink and one mocha) after I return from running the kids around tonight.

Keep us in your prayers!

A Couple of Hints

Many of you have tried to guess what today brings for our Ashley and although they were good guesses no one has gotten it right just yet. I thought I would let you know:

We opted not to get a wheel chair for her because we believe she is going to walk one day, and emotionally none of us were ready for this one. At this time she has a medical stroller that is basically a wheel chair without the large wheels on the back. We are still adjusting to its new look, but have had it for a few months now.

She is not riding horses today. That is scheduled for tomorrow morning(if the rain lets up). I will post photos of that too, but be prepared for her to look ridiculous in long pants, long sleeves, and a bicycle helmet(because her riding helmet has not been ordered yet) in Texas in the month of September! It is going to be hot, hot, hot, but we do not want her skin to make contact with the horse for immunity issues because we aren't sure if the horses may carry something she might not be able to hold up to. She will also be sitting on the horse with a blanket acting as a barrier between her and the horse. Trust me, I know she will look silly, but its not the look we are going for its the therapy.

She is not being fitted for leg braces either. We already have a set of leg immobilizers that we use for independent standing and to straighten out her legs while she sleeps.

All of those were very good guesses, but keep trying. Its something else.

Hope your having a great day.

9/08/2008

Stay Tuned

Something big is happening tomorrow. Something I never really saw coming. Its something I was told early on would not be helpful for her, but as she has grown things have changed.

Its gonna be tough. There will be lots of tears. I'm sure we will go round and round and round over it, but in the end she will understand thats its going to be ok.

If you remember what I said we would be doing this morning then you might be able to guess what is going on. If you don't remember then stay tuned because I plan on sharing pictures of it tomorrow afternoon.

Please pray for us. Its gonna be quite an adjustment for all of us, but especially for our little pickle.

I cried a tear or two this evening as I poured my heart out to Dave about her having to learn to deal with one more thing, and then in all of his wisdom he shared this with me. "I'd rather be picking out____________(I almost let the cat out of the bag) than caskets, and theres been more than one day that I feared thats what we would be doing." I cried some more because I knew that he was right. I'll take this over many, many, many alternatives ANY day. Then he shared this, "Remember our prayer? What did we ask for her? That she would give and receive love, and look how good she does that. She does that better then anything else she knows how to do. I'll take it."

So tonight I held that little pickle and I looked into her eyes as they sparkled back at mine and I knew that she would be fine. In time she will adjust. In our eyes she will always be adorable, and we will continue to live each and every day of her life with more gratitude than we had the day before because God is good.

Stay tuned, and I'll show you what's going just as soon as I can.

9/07/2008

The Game of Life


I used to love that game as a kid. The little cars, getting married, every once in a while you would pick up a new piece that announced you could fill your back seat with a kid or two, the buying of houses and insurance. Remember all that fun stuff? Well, guess what? I'm still playing that game and still loving it only this time its for real. There are days when I have to brace myself for whats coming my way, just Blake did here in this photo.

Then there are those days when I just hit the ground running, keeping the ball in front of me and the world behind me to the best of my ability. A lot like Al is here in the next photo. The game has kept us busy, busy, busy. Every week I find myself in the thick of it and every week I find my that my heart is so very grateful. I love the running and going. I love the having 3 kids part. I love the discussions that we have about keeping this house or moving to that. I love our profession,the office, the patients, the whole thing. Life is just blessed!

The best thing about our house this time of year is that our Ashley is in it! God has been so good to us. Oh, how incredible it has been to be here for the past six months. Can you believe she's been home six months next week? We are approaching her 2 year transplant anniversary this month. We are also approaching the one year mark since her episode of rejection( it happened a mere 5 days before the anniversary). Ashley Kate and I haven't been home for the fall season even one time in her life! Since August of 2005 we have spent every single August, September, October, November, and December in one hospital or another. We have missed out on planting our fall gardens, hanging our fall wreath on the front door, making our pumpkin patch, visiting a pumpkin patch, celebrating Blake's birthday, and eating Thanksgiving dinner with family. This year we are so excited to be home as we approach the time for each and every one of these events. The weather here in Texas has been bearable because of all of the storms in the gulf and it is almost causing us to believe that fall is just around the corner. The nurseries have gotten the first shipment of mums in and I even saw pumpkins at the grocery store this afternoon. Although I was so tempted, I knew better than to be fooled by their arrival. The temperatures won't last and the plants would die. The pumpkins would rot before the first of October because of the heat and I would be sad. Instead of being suckered, I decided to settle on a new pumpkin spice Yankee and am now sitting in the family room dreaming of Ashley's first fall at home and making plans for a photo shoot.

Each day Ash is looking better and better. She has grown so much this summer and I just ordered her fall clothes from Gymboree. She is so,so happy and silly and I love her so very much. She has a really busy week ahead of her. It begins with an eye appointment at 8am tomorrow morning and ends with a GI appointment in Shreveport on Friday. In between she will have her first riding lesson Wednesday morning(we are so excited!!!) and therapy on Thursday. She will attend 3 soccer games, 2 baseball practices, 2 Tae Kwon Do classes, 2 soccer practices, lunch at the school with the kids and a few other odds and ends thrown in there. She loves all the running and going and is taking wonderful two hour naps every afternoon. Her appetite is getting better and better and she now adds $50.00 of her very own to our grocery bill every single week. Dave and I agree it is the most exciting $50.00 we have ever spent. She is eating between 8-10 jars of level 2 and 3 foods a day. I'm really excited about finding out how much she has grown at her doctors appointment.

So much is going on in this household, and Dave and I are busy trying to figure out just how to sneak off with the kids for a trip or two before the end of the year. We aren't sure of where we are going but have a couple of plans in the works. Blake and Allison aren't little anymore and we are trying to make as many memories as we possibly can with these two young people before hanging out with mom and dad isn't all its cracked up to be. Just the planning stage has them buzzing with excitement and its really fun to watch. Blake will be turning 13 in under a month and is now attending youth group with some of his friends. His eyes light up when he talks about baseball, cars, or college and the only one of those things I'm ready to listen to is the baseball part. I just hold my breath when the others come up, and I try to slow time down as much as I possibly can. Allison is as beautiful as ever. The other night she passed in front of us as Dave and I were visiting on the couch and her daddy said, "Man, she's really beautiful isn't she?" I had to agree. A touch of lip gloss and it somehow transforms our little girl into a young lady. I can't even describe to you how frightening and exciting that is all at the same time. She and her dad have planned a date night this week. Again, trying to slow down the hand of time and make as many memories as possible while their still little enough to want to.

The Sentinels( Blake's soccer team) have won their first two games and the Cyclones( Allie's team) won their season opener yesterday with a score of 2-1. Allie blocked an incredible 3 attempts at goal with her body and one time I thought they were going to kick her in the face. She never backed down and when she came up with that ball and the other team came up without a point we all went crazy on the sidelines. It was so much fun to see her play! We are anxiously awaiting our Tarheel tournament schedule, and in the mean time Blake is hitting so well! As I watch him at practice I can't believe how much the guys have grown and how strong they have all become. We can no longer practice at our old field because they hit the ball too hard and too far and the cars that pass by are in danger of receiving a baseball in the windshield.

Life is busy. Just like in the game. Some days everything is going great and then out of no where a problem arises and we have to figure out how to get back on track. I'm just thankful that our little problems that like to pop up lately haven't had anything to do with our baby gherkin. For that we are more than grateful.

If you stuck with me this long then I am amazed! Sorry its been such a long and rambling post. I felt really good this weekend and think I'm finally back to myself. I promise not to go so many days without posting this week. Look what happens if I don't jot things down each day! Anyway, hope you all are busy playing the game and loving it as much as I am. Take care. Trish

9/03/2008

Attitudes

Sometimes there good...sometimes there BAD! Yesterday our baby gherkin had a BAD one. It began early in the day and lasted and lasted and lasted. She was absolutely the most disagreeable I have ever seen her! I just couldn't figure out(and still can't) what the problem was. Anyway, I went to bed last night at 8:30 with a terrible headache from all the growling and yelling that had been directed at me and guess what? I woke with the very same headache this morning and even worse than that is our Ashley woke with the very same attitude!

I saw small glimpses of her happy self once Blake arrived home from school. He had her giggling uncontrollably for a few minutes as he threatened to tickle her. That was enjoyable. Then this morning as she was growling at me for changing her diaper I told her we were going bye bye to take the kids to school and she smiled and waved the whole way out the door. Now? she is sitting in the middle of the floor screaming at her shirt and trying to pull if off over her head. I saw her go through this exact same fit 3 times yesterday and finally I just allowed her to stay in nothing but her diaper. At lunch time she ended up with green beans in her transplant scar(it is rather deep) and I allowed her to smear them all over her tummy because it made her happy for the moment.

Anyway, the best thing I can figure is that we all have good days and bad days and from time to time our attitudes can just plain stink. It looks like her attitude is going to be same today and I'm just gonna love her through it cause thats what my family does with me when I'm feeling that way.

At this time she has managed to remove her diaper but not her shirt. So here she sits, naked on the rug with a basket full of laundry strewn about. I thought the laundry might distract her for a while but it only took about 2.5 seconds for her to dump the entire thing and scatter it around.

I don't think she's sick or anything. If she is I don't see any signs of it right now. Its just a little unusual for her to be this grumpy for this long. Hopefully something will pass(whatever it is that is bothering her) and she will begin to have a better day. If not then my headache is sure to linger as well.

Hope your day is starting out a little better than ours. Have a great one. Trish

9/01/2008

Still hanging on...




... and loving it! Ashley Kate is having so much fun as she experiences her new found freedom from her line. She's had one her entire life except for that brief 3 weeks last summer before she went into rejection. Its been a month now since her line was removed and the stitches are all gone and all that remains are two new scars and her new love for swimming. She absolutely hates water. Unless its in a swimming pool? We have no idea what is going on in that head of hers. She kicks and screams and cries floods of tears during each bath, but put that little girl in a swimming pool and she acts like she's been swimming her whole life. We are having so much fun watching her as she learns to kick and splash and float around. The pictures of her swimming are so adorable so I decided to share once more.

We have the paperwork! All applications are signed, scripts have been written and now we are anxiously awaiting our first riding session. I still can't believe I'm going to allow this child to ride a horse, but I am. I will do anything to give her whatever it takes to make her life as full as possible. The research and results that we have read about from the use of horses in therapy for children are amazing. We have huge hopes for Ash as she sits a the top of this huge animal. I have no idea if it will work for her, but we are going to give it a try. I think her first ride will be at the end of next week. I know she'll think I've lost my mind as I allow them to take her and place her in that arena, but I hope it won't take long for her to learn to trust not only the trainers and the therapists but the horse as well. I'm scared for her and excited all at the same time.

Ashley is making slow but sure progress in the crawling department. She's not quite doing it, but she sure is showing us that she just might take off one of these days. Dave and I love to sit back and watch her as she figures out how to get this toy or that. She has even started to try and pull up on the sides of her crib a few times. She doesn't get to her feet, but she does pull up to her knees and it amazes us each and every time. She has come so far this summer and she looks so very strong and healthy. I kind of shake and tremble as I type that because I know how quickly it can slip away, but I can't help but feel so extremely grateful.

Life is slipping back into that normal pattern that I love so very much. Day in and day out its the 5 of us living in our home, hanging out on the weekends, and experiencing the day to day family events that make up the memories I hold so near and dear to my heart. The children are so grown up now and its really quite exciting to see who they have become. To say that they love their baby sister just doesn't express what they feel for her. It is so much more than just love. Its almost like a blend of love and appreciation and enjoyment. She adores them and they take such good care of her. You never find her without one of them. Blake is always willing to snuggle with her on the couch and Allie loves nothing more than to have Ash ride around life on her hip. Their relationships are so very sweet, and I love them so,so much.

The house is quiet as the children are now tucked in and sleeping. In a few short hours the week will begin and they will be off to school and Dave will be off to the office. Ash and I will spend the morning organizing our schedule for the week making sure we can fit it all in and that we don't forget where we are supposed to be each evening. I'm tired just thinking about it so I guess its time for bed. I hope your weekend was blessed. Take care. Trish