Take Me Out...

...to the ballgame!

We are loading up and then we'll be on our way. It's SO exciting to be going back to the ballpark with our beloved Tarheels. Its been a little over 3 months since they've taken the field and we are ready to kick off the season. Who knows what will happen, but like Blake always says, "Its not about how many wins we get, its about the amount of experience we gain each time we take the field." I love that attitude! He gets better and better each and every time he takes the field.

Ash looks really good to us today. Her new cube chairs arrived(just like the ones she sits in at the hospital) and she has been up and playing all day. We are super excited to have them. Our hope is that she will learn to stand up to her feet from the sitting position. This morning she did an amazing job with the assistance of her gait trainer. We don't have the room for more therapy equipment and the primary red and yellow doesn't match our family room decor, but whatever works right?

We are going to attempt to start some feedings up over the weekend. A very small amount, but enough to let us know if her coughing has gotten enough under control to keep anything down. We are really hoping it works. Her liver numbers are starting to show some effects from being on TPN over the last 5 months. Both the ALT and AST enzymes are elevated and continue going up each week. Her bilirubin is climbing just a small amount, but it is the first climb in this value since transplant. Just things were paying close attention to and knowing that we really need to get her back on full feeds.

Well, its time to get on the road. I'll talk to you guys sometime Sunday. We hope it will be a long day, a REALLY long day for our Tarheels, but you never know. If not, I'll catch up with you guys earlier. Have a great weekend. Take care. Trish

Snotty

Not our attitudes, but our baby. I have honestly never seen so much snot in my life! This child of mine coughs snot bubbles out of her mouth! I know its a little more than you bargained for when checking in on her this morning, but its true. I've never seen this before. She doesn't know how to blow her nose. I keep suctioning her as much as I can while wrestling her arms and long legs(I've got bruises on my chest from being kicked in mid suction). I'm giving her breathing treatments and the like, but nothing is changing. I keep telling Dave that I just don't get it. They prescribe her meds for EVERYTHING under the sun but no one can give her any thing to dry up this snot? I just don't get it. Until this snot issue is gone she will continue to cough and gag on it which in turn is causing her to vomit which in turn is causing her to become dehydrated. What a nasty cycle she is stuck in. She remains on 24 hour TPN and no feedings. Feeding her is pointless. Its dangerous and would only cause her more trouble.

Other than the snot, the coughing, the gagging, and the vomiting, I think she is feeling a little better. Last night she stole my heart as the lights were turned out and she was tucked in next to me. Her little face glowed in the dark as she smiled and played trying to convince me that sleep is not a necessity. She shared more smiles with me in the dark last night then I have seen from her in over a month. It was sweet and it was precious. I told her over and over again how much I loved her. Once she did drift off to sleep all I could do was stare at that face I love so much. Her long lashes, rosy cheeks, tiny nose, and red lips. I just love every detail of her face.

I'm so ready for her to get over this nonsense and just feel good again. I usually love the spring and all that comes with it, but this year summer and warm days can't come soon enough for us. I need her body to have a chance to be well and not be surrounded with all this RSV,FLU,COLDS, VIRUS', and ALLERGIES. This time of year is a nightmare for transplant patients.

I missed being home Monday of this week and so the laundry has officially taken over our house. I'm washing load after load each and every day trying to get it caught up, but honestly the more I wash the more it multiplies. The kids both have practice this afternoon( I love that!) and then Dave finishes up his week in the office today. Tomorrow he will be able to help me by watching Ash or folding laundry and then we will spend the afternoon packing the RV for the tournament this weekend. The Tarheels are playing in Euless this weekend and we are SO excited about the talent on our team this season. I think it may be the strongest team we've had in a while. I can't wait to see it all come together for them.

Life is back in full swing for us in this house. The only hitch is that Ash isn't quite as healthy as we would like for her to be. The whole TPN/no Feeding thing worries me more than I like to admit. It was the TPN that destroyed her liver a little over 2 years ago and almost took her from us. Knowing this necessary poison is all that is keeping her from fading away at this time is bitter sweet. I'm thankful for it, but hate it all at the same time. Well, Dave will be home for lunch in less than 20 minutes and I haven't even started cooking. Guess I better figure something out soon. For some reason he thinks he needs lunch or something. Guys are funny like that. Hope your days are busy and blessed. Mine are. Talk to you soon. Trish

Out the Door

Looks like Ash and I will be headed out the door and on our way to our front door this morning. As soon as the discharge papers are in order and I get us dressed then we will be headed home.

I look at this beautiful girl each day and I can't help but tell God how grateful I am for her. Everything about her reminds me that He is near. Close enough to listen to me cry when things fall apart and close enough to turn her situation around time and time again. He works on our behalf in the little and big things. I've made no secret out of our confusion in her status lately. There are moments that I just don't understand and even struggle to accept His plan for us, but I always know deep in my heart that He does have one. She came through this placement in such good shape and has shocked us all. The placement in October was one of the toughest we have ever witnessed for her and we all kind of expected the same course, but God had different plans in store for her. I am so thankful he did. Instead of 27 attempts with a temporary outcome it only took 2 with a more permanent result. What a blessing!

Ashley is not well. Her bowel is struggling to absorb feedings and she will remain on TPN for a while longer. She still has a cough that has turned from dry to wet that she just can't shake and it causes her vomiting. The combination of stooling out in her ostomy and all of the vomiting from the coughing sent her in the wrong direction. Her fluid status was in trouble last week and we had no idea where we were headed. We knew we were going to celebrate Allie's birthday with her and then we would be going somewhere. Omaha preferred us flying out there, but were willing to accept us deciding to stay local. Dave and finally decided that fluid balance was not a good enough reason for us to disrupt the family and leave again. Local is where we are. Her balance has now been evened out, but she continues to lose a lot of fluid so keeping it there is going to be tough. We will manage the best we can for as long as we can in our home and then if it goes the wrong way again we will be admitted. My hope for Ash is that this cough would leave her body allowing her to keep feedings down. Next I would hope that her bowel would recover from the damage it suffered from the rejection and begin to absorb more of her feeds rather than "dumping" them into her ostomy. Its a very long journey after transplant and it seems as though its never going to smooth out. I hope it does at some point, but lately its been a really rocky path. We came off of the best 7 month stretch in her life and have fallen into this difficult one for the past 5 months. Our desire for Ashley Kate would be to regain the "health" she had found last summer and only improve from there. When she is "healthy" she does learn knew things, achieves more milestones, eats a little by mouth, and is over all the happiest kid you've ever met. Its been a very long time since our little girl has been her happy self. We miss that part of her and hurt for her while she struggles.

Thank you for your encouragement, your prayers, your comments. I read them all and gain much strength from those of you who continue to follow Ash's story. Time to pack it up and get dressed. I hope to be home by noon. Have a great day. Trish

Sleeping it Off

I don't love...

...waiting rooms.

...recovery rooms.

...hospital rooms.

...and ridiculous HIPPA nonsense! That means absolutely nothing except that everyone employed at any level by the hospital(including some who aren't. For example: students) are allowed to know and discuss whatever they would like about your daughter with whom ever they would like, but you aren't allowed to have your own child's test results, lab work, files, etc. etc without signing your life away. I really, really don't love this one.

I DO LOVE...




... Ashley Kathrine Adams and every single day I get to spend being her mom.

and this quilt that was sent to her by one of our readers. Its wonderful and Ash loves to point to all the cats and sign "kitty cat". The colors make me smile! Thank you so very much.


If I look at the big picture then the things I don't love about these days pale in comparison to the the little girl that I do love.

She's been in surgery for exactly an hour and I haven't heard anything other than that they are working on placement. I'm not good at this part of our life. Especially when its just me and Ash on our own to work our way through days like this. You would think I'd be getting used to this type of thing, but I'm not. Call me stubborn.

We have lots going on this week. I was supposed to help serve lunch at the school this morning for Allie's class fundraiser. Blake has his first batting practice this afternoon with the school's baseball team and I REALLY wanted to be there to watch. Allie has soccer Tuesday evening. Ash has therapy on Wednesday. Blake has hitting lessons that night. Allie has soccer again Thursday. Then she has a slumber party on Friday at a friends. We're supposed to leave for the baseball tournament on Friday evening. Allie's first soccer game this season is Saturday and the Tarheels season opener is Saturday and Sunday in Dallas. Ugh, I'm out of breath and that's just the extras.

Ok, this little ramble did the trick. Ash's surgeon just popped around the corner and he did get a broviac placed in her right sub clavian that exits the center of her chest. Whew! Its not a pic line. Its a more permanent central line that is much more difficult to pull out. They are working on getting her extubated and then will move her to recovery. Eventually I will get to go sit with her and then we will make our way back up to her room. Now, we just have to work on her fluid status and once she is back in balance and no longer dry we might make our way toward home this week.

I love home. Its my favorite place in this world. Talk to you guys soon. Trish

She has no idea

Our sweet Ashley Kate is sitting in the middle of the bed, IV in the left arm(the one with her good vein), a quilt across her lap, and Blue on the DVD player. She is signing and pointing to me this morning and has no idea what she's done. The little stunt she pulled the other night has not only gotten her and I this unplanned "vacation" to Shreveport, but has also caused a whole lot of trouble. For her. The IV went in with no trouble. Our nurse was excellent and only had to stick her one time. She drew her blood at the same time and so yesterday was about as easy as it can get. Today may prove to be a whole different story.

They will be coming in here in just a few minutes to attempt to get blood drawn. I don't know if it will go quite as smooth as it did yesterday. Like I said the good vein already has an IV in it and all of her major veins are off limits due to the scheduled line placement. They have no idea what vein will give them access so nothing on the top half can be used other than the tiny vein in the top of her right hand. That leaves them her feet to choose from if the hand won't give up blood. Her veins are so tiny. Her little hands and feet are the thinnest, tiniest things you've ever seen. She has not "meat" so to say. I've watched this nurse(the one we have today who is really, really good) attempt blood draws from Ashley Kate when we here in October and it didn't go so well. She's not an easy stick and even the best can get stumped when attempting. The only thing that kept me from hurting some one that day was the fact that Dave was here keeping Ash hidden from me as the dug around attempting to get blood. He's not here today and I'm hoping to keep my composure, my testimony, and my mind all in tact as we attempt to get through the day ahead.

The line placement has them all worried. The surgeon has been in and isn't feeling that confident as he remembers the nightmare of very little open passages throughout her veins. He said "I'll get something. I just don't know what." He mentioned making an incision in her neck and attempting to gain access inside there. I have no idea what will actually take place. I only remember the same nightmare Dr. S is referring to. A 20 minute procedure lasting 2 hours. 27 attempts all over her neck and chest. Bruising and swelling that lasted for a week. It was so awful! My hope and prayer is that today will prove us both wrong. I pray for an easy procedure that results in a line that will allow us to go home as opposed to going well, you all no where.

Your prayers for Ash today would be appreciated. I know many of you continue to pray for her each and every day and you will never understand how grateful my heart is for each of your prayers. I'll let you know how the day progresses as soon as I can. Surgery is calling for her already and I haven't even gotten to shower yet and they failed to do the ultra sound showing what access is available. Hmmm... I wonder how this will work out? Gotta at least run and get dressed. Take care. Trish

Some Times...

Originally written Saturday evening posted on Sunday evening

...your just so tired and hurt so much that it seems that waking up and facing yet another day is impossible. Tonight I am finding myself in this place.

We almost made it. We were so close. 5 months of protecting it, babying it, keeping it infection free. Just a week ago she was less than 10ccs away from her goal of full feedings. Just days away from not needing it any longer and then... it all fell apart. We stopped her feeds. Put her on TPN full time and tonight she pulled out her own pic line. Ripped it out of her arm. I had just turned off the lights and climbed into bed when I heard her fuss for a second(literally) and then begin to applaud. Loudly, over and over again. I thought she was playing. For a second. I had to switch on the light to see what had made her so happy. Thats when I saw it. A little white catheter that had been inserted into her arm, into a vein, that lead toward the heart. NO longer inserted, but pulled out from its place. Dressing still in tact. TPN still dripping from its end. Unbelievable. We were so close, but instead of being finished we are starting over.

My heart sank. The kid's hearts did too. We all knew she had to have this line.

I just can't find the words to explain how it feels to be pulled between our two lives. The life that keeps us home and the life that keeps drawing us away from our home and into the world of hospitals, procedures, illness, etc. There are no books, no instruction manuals, no tried and true volumes of advice that tell you how to parent a chronically ill child and how to remain a parent to your healthy children at the same time. I am constantly, every moment of every single day, the moments I am awake and the moments when I close my eyes, trying to figure it out. The weight of the stress, the burden, the pain is so great on some days that I find myself struggling to breathe. If only she could wake one day and be allowed to grow up as a little girl with no greater hurts than what a kiss from her mommy and pink band aid would fix. I dream of that life for her all the while knowing that it is not what will be.

I don't pretend to understand the will of God or the plan He has for this journey our sweet Ashley is on. I've never been one to say that I "know this or that was God's will" because I believe that is a very serious statement. One that should not be used lightly or thrown around as often as it is. I make one exception to that belief in my life. In this one and only thing do I know without a doubt that His will has been revealed to me. I KNOW that I was called to be her mom. I KNOW that I am doing what I was created to do. I KNOW that this was and is His will for us. If only I could share with you the evidence of this then you too would understand why Dave and I can confidently say this is God's will for us. In all of the confusion of this life we are living we are not confused about this.

So tonight we wait on a room in the PICU to open up for our Ashley and then we will take our tiny baby to have a new line placed into her veins so that we may begin this leg of her journey over again.

We are tired. She is too. We are weary. She is too. We are hurting and confused. She is too. I didn't get to read the end of this story and even if I had I would have still picked up the book and began the journey. In between the pages of it I have found great joy. Such that I had never experienced. I have learned lessons that have changed me as a parent, as a partner, and as a person. I have loved so deeply that there is no turning back. Obviously He still has more work to do in our family.

My Girl

Eleven years ago this morning this beauty entered our world and changed us forever. Her brown hair, brown eyes, flawless complexion, and contagious smile. That's my girl! Allison Brooke kept me on my toes for the first 3 years. They were some of the roughest, draw a line in the sand, power struggling, learning who was boss, experiences of my life, but OH WHAT JOY this beautiful girl has given me. I love her so, so much and my life is blessed because of this child.

As I carried our youngest beauty out to the car in the early morning hours I paused for a moment and stared at Allie's face. She was sound asleep and none the wiser about us leaving for the hospital. Oh, how she has grown and matured. I look at her today with those sparkly ears, manicured nails, cute new hair cut, and try to find my little one in pink sponge rollers, enormous hair bows, and plastic high heels. Where is that little girl I remember so well? Eleven years goes by so quickly. She is on the verge of outgrowing the little girl and becoming the young lady. I'm the lucky one who has the privilege of watching it happen up close.

Allie B. your mom loves you so very much. What a joy it was to celebrate your life with you the past couple of days. I loved every minute of it and I know we will remember this very special birthday for years to come. Thank you for being so wonderful. Thank you for being as silly as your daddy. Thank you for being such a good student. Thank you for being a wonderful big sister. Thank you for being an ornery little sister(it has taught Blake so much). Thank you for being so strong, so independent, so determined. Thank you for being exactly who you are. I love that you know what you want in this life and that you don't stop until you achieve it. I love your never give up attitude on the soccer field. I love the loyalty you show to your friends. I love that you are a miniature version of all the best parts of your daddy and me. I love that you love all things sparkly, flowery, artsy, and creative. I don't understand it, but I love it that you have those things inside of you. I love you more than you will ever know. I'm so sorry I'm not with you today, but SO thankful we had time to do all the wonderful things we had planned. Happy birthday sweet girl. I'm thankful for you and for the privilege I have of being your mom and your friend.


P. S.

I had no idea that my camera had been dropped and broken as I grabbed it and took it along with us to document each and every surprise we had in store for Allie. I took picture after picture and when I arrived home last night all I had was 7 or 8 not so great shots of her eleventh birthday celebration. My heart is so disappointed! On top of that, things began to unravel with our Ashley Kate the last couple of days and we are currently in the hospital expecting to be scheduled in the OR sometime tomorrow. I'll explain late on today. Your prayers for this very weary set of parents, older siblings, and tiny pickle would be so appreciated.

A tiny box

I'm almost ready to load the car with heart shaped cookies, ice cream treats, and drinks for Allison's class this morning. I'm so excited! Not about the treats, but about the tiny box I have hidden inside of the cookie box for Allie. She has NO idea what today holds for her. I could wait. I probably should wait, but can't. I want her to have a fantastic day at school today full of jitters, nervous butterflies, and anticipation so large that she can't keep from letting it spill all over her face. So in a little more than an hour from now she will be made aware that one of her dreams will be coming true this very afternoon. I LOVE being a mom!

She has a surprise hair appointment, a surprise manicure and pedicure, and then the big event. We will follow that all up with dinner at her favorite restaurant and then come home to get ready for our day trip tomorrow. It too is full of surprises! My sisters are meeting us with my nieces(Allie has NO idea they are coming) and after a little lunch at her new favorite spot in Dallas( The American Girl Bistro) we will be spending our afternoon ice skating at the Galleria. With brand new sparkly ear rings of all things! I can't believe we are doing this!

Dave and I laid in bed last night and talked about how she has no idea that this dream of hers hurts. She is in for a surprise as they place a little plastic gun loaded with an earring next to her ear lobe and shoot it through! It gives me the creeps just thinking about it! I hope she has the nerve to go through with it twice! What if she wants to stop after one? What will we do with a half ear pierced eleven year old? Oh...my... goodness...! You would think this was transplant surgery or something! I mean I'm really nervous and a little scared for her. I know its not a big deal, but try telling that to my stomach. This is a girl who has NEVER even been poked by a needle! Not even a blood draw. I hope she doesn't cry. I hope I don't cry!

Dave is staying with Ash this morning and then again all afternoon while I run the girls around town to get "beautiful" before our trip tomorrow. I think I'm most excited about her getting to show all of her cousins(who have had theirs pierced for years) that she finally got it done. They are going to be SO excited for her. Try having not one, not two, not three, but FOUR little girls beg you for this for the last FOUR years! It can get exhausting.

Anyway, that's the plan and I'm ready to go. Hope you all have a really blessed day. My stomach is in knots and probably will be till its over. I'm seriously thinking about having Dave go to the actual piercing part for me. I don't want to get sick all over the floor, but I don't want to miss it either. I just wish it wasn't called "piercing". I think that's such a violent word! Then again so is transplant! Wish us( I really mean me) luck. Take care. Trish

Our new life

This is our new life. Or maybe its our old life? Somehow it all seems strangely familiar to me. Its like we've been here before. Like the year before transplant? When all that sustained our sweet baby was an IV pole with bags of fluids connected to a catheter that was inserted into a major vessel that lead to her heart. Yep, when I think about it we have lived this life before.

See that little bag(ok, thats not really true its the LARGEST one she's ever had) of yellow fluid? That's her TPN(it stands for Total Parenteral Nutrition). This is what is sustaining her while she is sick and unable to be fed. See the bag of clear fluid? That's her IV fluids that keep her from becoming dehydrated while she stools out in her ostomy bag. See that lump in the chair? Thats our tiny pickle. The gherkin. This is pretty much the way she looks for most of the day. She's worn out. I'm not sure from what. Maybe all the coughing? Our best guess is that she is still battling the RSV. Thankfully her oxygen is not being compromised and her lungs are clear. What a tremendous blessing that is!

We plan on keeping her on full TPN through the weekend and beginning feeds again (slowly) on Monday. We attempted some PT yesterday, but it didn't go that well. She did stand up 3 times, but they were short and shaky. She tried and thats all we can ask of her. We will try again tomorrow. Hopefully she'll start to turn around pretty soon. I miss her silly self. Her smiley, happy self. Those parts of her have been absent for so long. I can't wait to watch it come back.

Outside of Ash being so ill life is pretty good. We have lots going on this week with baseball practices, batting practice, a tryout(this afternoon) to play for the school, soccer practice, a girls trip this weekend to celebrate Allison Brooke's 11th birthday, an afternoon of surprises in store for her tomorrow, an out of town conference for Dave over the weekend, and then all the normal stuff we do each week. We are super excited because the Tarheels play in their season opener next weekend and Allison's soccer season begins as well.

Grandma is on her way home from an out of town trip to stay with Ashley Kate for us on Saturday as we leave to celebrate with Allie. I'm a little nervous because of the whole TPN issue, but its just a day trip and I'm sure with a little instruction they will do fine. I really hope she is feeling a little better by Saturday. Its always hard for me to leave her behind. I don't leave town very often without her and especially not when she's sick.

Well, thats pretty much whats going on in our little yellow house this week. One sick pickle, a very busy baseball player, and an almost 11 year old beauty anticipating her big surprise. Life is good. We are truly blessed, and Dave just walked in for lunch. Guess I better be going. Have a great day. Trish

Better Day?

I think perhaps it might be a better day for Ashley Kate. I mean, she's awake and its not even noon! Yesterday she didn't wake until after 6pm. In addition to being awake she is sitting up on my bed and playing. All of these things lead me to believe that we may have made the right decisions yesterday.

She hasn't been vomiting since we stopped her feedings. She's still coughing, but if there is nothing in her stomach to come up with it then it doesn't produce vomiting. Running the TPN 24 hours seems to be giving her more energy and her color looks better to me today than it has the previous 3 or 4. I'm hoping in a few days, with a little bit of sleep and some more calories that she might start turning the corner and start feeling better. We will have to wait and see.

So I loosely titled this post "better day" and followed it with a question mark. It depends on what you put it up against. She's awake, has color in her cheeks, is sitting up, and isn't vomiting. That seems like its a better day. If you take into account the fact that the whole point of transplanting her bowel was so that she might take nutrition, absorb it, eat, and grow without the use of TPN and the side effects it has on the liver then you might not be able to call it a "better day".

I'm not going to look at the big picture today. Instead I'm going to take baby steps with Ash and be grateful to see her awake, interacting, playing, and watching Blue. The whole feeds vs. TPN issue will be tackled in a few days. First we need to give her a chance to start getting over "this" whatever "this" happens to be.

Just wanted to let you guys know that she seems to be feeling a little better this morning and that it looks like she won't miss out on today by sleeping through it. For those things I'm thankful. Have a great day. Trish

Plan of Attack

After talking to every one today, all of the decision makers in Ashley's medical care, we have decided to stop her tube feedings and to place her on full TPN and maintenance fluids for the next 48-72 hours. The vomiting and its potential to cause her lungs such harm is just too risky. Her lab work shows signs of a struggling liver, probably because of the virus that has invaded, the beginning signs of dehydration, and a panic value of low sodium. Everything is a little out of whack because of what she is losing while vomiting and her lack of ability to keep anything down long enough to absorb nutrients. In addition to these changes we are doubling her breathing treatments and adding a cough suppressant to the mix in hopes of giving her a little break from all the coughing. Her lungs sound clear and she is maintaining oxygen sats at 96-97%. Thankfully she remains fever free and we will remain here in our home. There is nothing that can be done for her in a hospital setting other than what we are doing here and so the only difference in her course of care would be the location. She's obviously more comfortable here.

Basically she doesn't have the ability to kick this thing and the lingering of it is only making other things worse for her. She hasn't been awake at all today after being awake for most of last night. She doesn't feel well and I'm hoping that making these changes for her will help that to change sooner rather than later.

Thank you for remembering her in your prayers.

Images

As I lay my head on the pillow and wish for the haunting feelings inside of my head to stop I try and concentrate on the images that I took in here in our home over the weekend. My heart is grateful to have had this time at home with our children to do the ordinary, nothing special, kind of things. Ashley Kate continues to be ill and the longer it lingers the more my head and I'm afraid my heart begins to worry about her and where we will be spending this spring. The tears well up in my eyes as I watch her through the night and a lump forms in my throat because I so desperately want for this precious child of ours to feel good for a change. I don't want to write about those thoughts. I don't want to share them because I know how tired everyone is of the hard times and I want to share the good with you, not the bad. Please know that I am trying so desperately to keep writing, to keep positive, to keep going. Its been a struggle lately, but I'm still here and I am trying.

Some of my favorite images of this weekend were of the not so special moments that make my life so incredible. The image of my teenage son snuggled under a blanket and talking his mom and dad's ear off late into the night. Far past his and our bedtime, but far to precious to get up and retire for the night. As he rambled on and on I couldn't help but stare into his face. No longer any signs of that little boy who used to pile onto my lap each day as we awaited the arrival of his "Allie girl" and snuggled in close for his afternoon nap. That little boy has grown into a young man who I couldn't love more if I tried and who I couldn't possibly imagine being any more proud of than I already am. I could have listened to him talk all night, but eventually the 3 of us did climb into our beds and I lay there determined to never forget the way it feels to be one of his friends. What an honor it is to know that he considers us more than just his parents. I love him so, so much.

Then there is our Allison. Beautiful Allison Brooke who has spent her weekend trying to convince us that she is old enough to have those tiny ears of hers pierced. She'll be turning 11 years old next weekend and she's been begging since she was 6 to have it done. There's just something about poking holes in her body that I thought she needed to be old enough for. I don't know. Call me crazy or even un cool, but I wanted it to be something she looked forward to, something special, a milestone or something. Little does she know that come Friday afternoon as I pick her up from school she has an afternoon full of surprises coming her way. I couldn't help but turn my head away from her to hide the smile that crossed my face during each and every plea she's been making this weekend. She has no idea we have finally decided that this is the year. I can't wait to hand her that tiny jewelry box and see the look on her face as she opens up the pair we have chosen for her 11 birthday. Friday evening she will finally be wearing a pair of real earrings. I can still see that little girl prancing around the kitchen floor in my high heels with rings on every finger and rows of beads around her neck and plastic clip ons dangling from her ears as she announced that she was moving to Canada. Of all places! I have no idea where she dreamed that up, but I'll never forget it. Purse thrown over her shoulder and baby in her arms they were on there way and she would see me at lunch time. I still giggle at the thought of it. She was barely 3 that day and just as beautiful as she is today.

My favorite image of the weekend came in the form of a tiny baby girl who just didn't feel good cuddle up on her daddy's chest. She had snuggled in so tight and drifted off to sleep as her rocked her. I sat and stared. The minutes passed and I couldn't take my eyes off of the two of them. How he missed her while she was gone. So many nights he would say over and over again how he wished he were there to rock her to sleep. I love to watch him hold her. He loves her so very much. He is just as helpless and lost as I am as we watch her struggle the last few weeks. She's not getting well and there is nothing anyone can do for her. Her little body doesn't have a chance at fighting off whatever it is that has invaded causing her to cough all day and all night, vomit each hour, and feel so weak that she won't sit up. She can't keep any of her feeds down and her throat is raw and sore from the coughing and vomiting. Her immune system needs a break. Just long enough to get over this, but its impossible to give it one. She must stay immunosuppressed to keep her organs safe. Its an ugly place to be. Its so discouraging. Its been months and months and months since she was "healthy" and she is so tired of feeling bad. I can count the number of her good day in the last 5 months on my fingers. There haven't been that many. Still she trys.

At this hour our tiny pickle is strapped into her car seat for another night. She coughs for most of the night and vomits about 50/50 of it. She's losing so many calories and even though her liver numbers are climbing I am thankful for the TPN. Without it she would be losing large amounts of weight which would have us packing our bags. For now I run TPN overnight and a continuous stream of IV replacements to keep her from becoming dehydrated. Her pic line is still working. I am amazed at how long it has lasted. She lost one set of the sutures last week during a dressing change, but again I am amazed at how long they were holding. It was placed the first week of October and here we are in the middle of February with the same line. What a blessing! We've had to baby it a little bit here and there, but again I am grateful to have it. It allows us to keep her here at home and out of the hospital.

Our days at home are still as precious to me as always. The endless piles of laundry, raking of leaves, shooting hoops with the kids, tucking them in, holding Dave's hand, trips to the grocery store, car pool lines, and ball practices. I love it all. The nights happen to be long at this time as Ash struggles to find rest, but I am so thankful to be in our home with her. She is surrounded by those who love her and by the things that make her the most comfortable. If she has to be sick at least she's at home. For that I am happy. There is nothing her team of doctors can do to help her get well. They can't make her body stronger, there is no prescription to be given for this cold or whatever it is, and there is no magic that will heal her bowel. I'm beginning to wonder if it will ever recover.

Well, I'm going to try again. Try and close my eyes for a minute or two before Ash starts vomiting again. I just took a break and cleaned her up, turned off her feeds, and emptied her tummy again. We might get 30 minutes or so of rest before the next round (if were lucky). I'm pretty tired tonight. I think I stay that way these days. I must be getting old. At least my hairs no longer gray. Still trying to convince myself I'm not as old as I feel. Hope your weekends were blessed. Goodnight. Trish

Around the House

Look what I found lying around the house this week...





My goodness, this baby is growing up! Look at how big she is(just ignore my unmade bed and pretend that I didn't tell you that I took this picture at 3:00 today!).





She's making up for the long nights at various times throughout her day. The crazy thing is that mom doesn't get to take those naps along with her.

Tomorrow I'm getting out for a while. An appointment with my hair stylist, a fresh set of nails, and an eye exam(I've been out of contacts since July of last year!). Yeah me!!! Dave is sitting with Ash while I run around and take care of those things. Trust me when I tell you the gray hairs are taking over! Happy Valentine's Day to me:)

Where Are We?

Still here. Exhausted. Past the point of needing a good night's sleep. Uninterrupted, deep, lost in my dreams kind of sleep. I can't tell you how long its been since I've slept more than an hour at a time because I've lost track.

Ash is still not feeling well. Her fever has not returned, her blood cultures have shown no growth. That' really good news. Her cough? Still here. Still causing vomiting. She is grumpy, and unhappy, and frustrated with all the coughing she has going on. I allowed her to be naked(except for her diaper) the first couple of days while she was so hot with her fever, but since it broke I dress her each day in hopes of her feeling as good as she looks. So far its not happened. Each day when she hears the bath water running or sees me walk in with an outfit piled in my hands she starts to fuss and shake her head "no, no" at me. I guess when your 3 and you don't feel good you wonder what your mom's problem is and why she insists on making you get out of bed and sit up. I'm just assuming that's what is going on in that little head of hers behind those eyes that tell me she' s really had enough of my issues. Anyway, that's how she's feeling. Not as bad as it has been, but still not good.

She has PT today. Not sure how well its gonna go, but I'm sure she can survive. We've had her standing a few times this week even though she insists she doesn't want to. Honestly, I'm not torturing her. She thinks I am, but I'm not. She does seem to perk up a little after she's forced to be dressed and out of the bed. If I allowed Ash to do nothing for the rest of her life she would. She's content with not standing or walking. She doesn't think there is a problem. It the rest of us would just get on board with her plan then life would be good. Problem is that she is weighing close to 30 pounds. Lifting her in and out of a bath tub, up into the car, etc, etc, is getting difficult. It this child refuses to walk then she will eventually be stuck in one spot and really dirty because I don't see myself having the ability to carry around a 50 pound child at the age of 7 or 8. Its just not possible.

Last night in my tired frame of mind I started to panic. About things that mean nothing in the here and now of today, but when my mind starts drifting into the future this tends to happen. Ash will be 4 this fall. 5 next fall. What does that have to with anything? Kindergarten. It makes me cry. It all makes me cry. I have more questions then I do answers. I have more panic attacks about the how the when and the where then I do plans. Dave asked me a simple question about faith and does it ever waiver in the midst of all that goes on in this world. OK, maybe it wasn't really a simple question, but it should have been simple to stay on task and just answer it. Instead it sent me down this path of what will I do and how will I teach her and where will we find the resources she needs and if I will know this or that. Its crazy. I think I'm crazy(or possibly just tired). Anyway, the whole point of this is to share what my husband reminds me of every once in a while. Its just a thought he's had, and it seems to calm me down when I chase these rabbits. Home school. Why did we do it for so long? Why did we choose to school Blake and Allie at home for 7 or 8 years?(Did you know we used to home school our children? I'm not sure if I've ever told you that before or not?) How did we stumble upon that path? Well, I thought I knew that answer. I've always said it was about character. Plain and simple. I wanted their character to be strong, unwavering, grounded before I sent them "out" there. That was the reason, at least I used to think it was. Until Dave shared with me that he thought perhaps it was one way God was preparing us to raise Ashley Kate. Huh? What?

When I start freaking out about how will I ever figure out how to teach Ash things like colors, numbers, phonics, etc. etc. he reminds me that I will do it just like I did when teaching Blake and Allie. I will start with the basics, and as she learns one thing we will go on to the next and then the next and then the next. Its easy. We just teach. We show her. We allow her to learn. That's all there is to it. It may take a little longer, it may be a little more challenging, it may never even happen, but we wake up each day and we teach.

So as I look across the room at my tiny baby girl bundled up in the recliner and pulling her lips off(because you know that she's coughing and something is to blame for it. Might as well be her lips) I think that today we will pull out our flash cards and keep on keeping on. I think she's starting to get it. Yesterday she was holding a red apple in her hand and a fish puzzle on her lap. I didn't get the connection between the two toys. As I watched her play with them both she began to tap, tap, tap on the red fish and show me the apple. I said, "Apple". She signed the word apple. Tap, tap, tap on the red fish. I said, "Fish". She pointed for me to sign "fish". Its one of those words she knows she knows but doesn't sign for herself. So I signed "fish" for her still not getting the connection she was so clearly pointing out to me. "Apple", "Fish". "Apple", "Fish". Over and over again. She was clearly trying to tell me something. Then all of a sudden I got it. Red apple, red fish. Colors! She was connecting it. She had a RED apple in her hand, and there was a RED fish on her puzzle board. I finally got it. She knew what the whole point of that exercise was the whole time. It just took me a while.

Now, who do you think needs kindergarten more? Me or her? Honestly, there are days when I think it me. This baby is smart. So smart that sometimes I miss what she's telling me because I'm not quite on the same level as she is.

She's going to be fine. No, our faith doesn't waiver in the midst of this crazy world, and yes I do need a good long nap. All is well in our little yellow house. We're all still here, and now its time to run her bath water. Wish me luck!

Heavy

That's the best word I can think of to describe where my heart, my mind, my thoughts are. Last night I admitted to Dave that I just feel such a heaviness all the time. It never gets lighter. Never easier. Its always there. Some days heavier than others, but always pressing down on me.

Ash is sick. She has been since Sunday morning. She was coming off of her 3 best days in over 4 months and I was starting to think that we were turning a corner. Just as my heart became light, the heaviness, the fear, the worry, the stress came back again.

Sunday morning Ashley woke up with a cough. A cough that caused her to vomit. Over and over and over again. By Sunday evening she spiked a high enough fever that we needed to send blood cultures. The fever lasted on and off for over 24hours. It finally broke for good last night, but the irritating cough remains as does the vomiting. The fever is scary enough in itself because of her pic line, but its the vomiting that brings me the greatest amount of fear. I asked Dave if he thought there would ever come a time in Ash's life that her vomiting did not send me into a panic, a sleepless cycle of sitting up and watching her for hours on end? He doesn't think it will come. I think I agree. Its been a year since she aspirated, but its the images of what followed that brief moment that haunt me. They truly do. She starts to vomit and I immediately drain her stomach, turn off her feeds and wait. She hasn't had hardly any feedings since Sunday. I am running everything IV. She is on TPN and a continuous maintenance of fluid trying to fight off dehydration. We drew labs yesterday and her BUN and Creatnine levels looked fine. No signs of dehydration.

Ash is grumpy, fussy, miserable. I have rocked and held her for 2 days straight. No sleep for any of us. Dave ended up in Blake's room last night trying to get some rest. I'm exhausted and stressed. My heart is heavy as I realize that it will never get easier for Ashley Kate. Its a continous cycle of ups and downs. A few days here and there of feeling good slipped in between each and everything that is going around. It wears on me. Which is why I haven't posted. I'm in a bad place right now and its so very hard to not allow the ugliness of the heavy heart I'm carrying slip into my writing. So thats the truth.

My prayers for her are so full of gratitude for her life and a pleading to protect it. I can't pray for Ash without falling apart. I so desperately want a normal life for her. Whatever normal can be achieved.

I think now that the fever is gone that she may start to turn around. I'm going to attempt feedings again today. Once the cough is gone we will have a little more sucess in that area. Ash has never been one to keep anything down once she starts coughing. That's the most frightening part for me. I know she needs the calories to help her body heal, but its the whole aspiration issue that scares me the most.

So I'm hoping for her to get well. She's on an anti-viral(has been since October) and I was hoping it would have given her some type of protection. She's already gotten viral pneumonia, RSV, and now this. Who knows what it is? It could be bacterial. It could be a line infection. It could be anything. I just want it to go away.

This is not the post I wanted to follow her standing video with so I have avoided it all together. I know how tired I am with the ups and downs and I can just imagine that you are all tired too. I'll be back soon. I think.

Better than Ever

Today she did better than she ever has! Ash had therapy and she looked better than ever. After the rough fall and winter she's had we never expected her to do this on her first day back,






but she did! If you watch closely in the first minute or two you will see her dance just a little when the music comes on. If you keep an eye on her you'll then see her start to grin just a little here and there. Finally she signs the word stars when she sees them on her episode of Blue. We missed the sign at first because she was a little off the first time. Once we looked up at the screen we knew exactly what she was signing. She's usually right on with this sign which is why we were a little confused but she knew what she saw and what she was signing. I'm SO,SO PROUD of this baby!

Ash has been so weak and shaky the last few months we had no idea she could stand this well. She has been wearing her immobilizers for about a half hour each day and playing in the toy chest. I guess it helped her strengthen those tiny legs. Our hearts ARE encouraged. Probably more than they have ever been. We have been praying each night as a family for her to gain the ability to walk and talk. I really believe its going to happen for her someday. Maybe even this year!

She looks so good. The last two days have been her best in months and months. Her bowel is still not as healthy as it was last summer and I don't know that it ever will be. Her stool output remains way too high and she continues to be on TPN support. I'm not sure how long her liver will hold out, but for now she is not on any lipid support. It is our firm belief that the lipids are what cause the damage to the liver. If she needs TPN support for a few more months then I think that as long as we keep her off of the lipids(the fat) then she may be ok. She began eating small amounts of baby food this week. A jar or two each day. Not much, but at least its something. Our hope is to get her back to eating between 500-600 calories by mouth and only have her on the feeding pump overnight. We have a long way to go, but she is proving to us that she can handle more and more each day.

My heart is so grateful. So very grateful for this tiny life that has been placed in our hands, our home, and our hearts. I love her more than I ever knew I could love anyone. She is precious. So very precious to us. Each day I fall more in love with her than the last. We are so blessed. The hard days, the long nights, the broken pieces of our hearts seem to disappear as I hold her close to my heart each and every night before bed. I rock her and she cuddles in close to me. Its an amazing life. A gift. One that I will never take for granted. Oh, how I love this child of mine!

A couple more question that have been asked today.

" Why doesn't Ashley talk?"

We don't really know for sure. The best guess is that she may have suffered from a brief lack of oxygen to her brain while they were working on her through her code. Her heart rate plummeted while they were attempting to tap the pericardial effusion(fluid around her heart in the pericardial sac. That is the sac that holds the heart.) that had developed. We were told it was an emergent procedure that could not wait to be scheduled in the OR. It had to be done immediately at the bedside and we were assured that there was a less than 5% chance of complication. At some point as the cardiologist inserted the needle to drain the fluid she went into cardiac arrest and a code was called. They performed CPR for 10 minutes as they worked to re-establish her heart rate. It was the single worst day of my life. I thought that we had lost her and they could not assure me that we had not. Ashley was saying, "my momma, my momma" in my lap minutes before the procedure and has not spoken since that time. Although the transplant team has never discussed or acknowledged this day with us, I was there and I witnessed it. They saved her life that day. Amazing nurses came to her rescue and doctors whom I had never met worked as quickly as possible to keep her breathing. 2 years later we have her with us and we work each and every day to learn to communicate with her.

"Why don't we publish any of our comments?"

Well, its a long story. After much struggle it became necessary for Dave and I to make our comments section private. We opened Ashely's story and our hearts to this world through this journal and although the majority of those who read it are amazing, loving, supportive people there are a select few who seemed to take great satisfaction in turning it into something ugly. We were forced to remove the public forum and make it impossible to send us an anonymous comment. Its worked out well. We may have lost a few commenters along the way, but since this time last year(it will be a year at the end of this month) we have still received around 8000 comments. Many people prefer the privacy and have felt the freedom to share more of their lives and their situations with us since that time. Every once in a while I think a comment or two gets lost along the way, but most of them come through to us.

The Signs She Knows

Last night we tried to come up with a list of signs that Ash has mastered and the ones she recognizes. Each day its getting tougher and tougher to keep up with her. Its amazing how just like a toddlers vocabulary increases each day that her signing vocabulary increases as well. Here is what I know she knows(like yesterday she hides some of her knowledge from us and then will just show us a new sign out of no where).

Words she signs for herself:
Walking
Signing Time
Time
Tree
Stars
Socks
Shoes
Cookie
Candy
Apple
Banana
Eat
Drink
More
Train
Yes
Clean
Wash Hands
Potty
Bath
Hurt
Cry
Go
Wait
Doll
Bike
Ice Cream
Car
Mom(when she feels like it)
Dad(same attitude as above)
Bear
Baby
Milk
Ball
Bird
Cold
Sun
Cheese
lettuce
and now Caterpillar!

Words she Recognizes and Wants me to Sign for her:
Strawberrries
Cracker
Moon
Flowers
Cereal
Bread
Dog
Cat
Fish
Airplane
Cloud
Water
No
Stop
Friend
Tiger
Elephant
Zebra
Giraffe
Outside
Butterfly
Rainbow
I know this list is much longer I just can't think of them all.

Then there are words that I KNOW she could sign, but CHOOSES not too because she's too stubborn. Word like: please, sorry, Thank you, etc. Honestly, how do you make a toddler be polite? I can't get her to understand that she needs to say please when she would like for me to do something for her. All she does is point, and point, and point and then if I still haven't done it for her she signs that I have hurt her and made her cry. No joke. Its just that dramatic!

I'm going to try and answer some of the question you asked. She uses the world of American Sign Language(ASL) and it has opened up Ash's world. She is able to communicate with us and does so all day long. She is constantly asking to know what different things are. One of our readers suggested a "dictionary" of sorts and I ordered it last week and it just came in. I keep it on the table in the family room for quick reference and plan on taking it in the diaper bag when we are out. Another reader asked about the flash cards. I ordered them directly from the Signing Time website. She loves to flip through them every single day. We love to drill each other to see which of us can sign the words the fastest. Where did we find the series? Well we didn't know anything about it. Ash's first DVD was sent to her when we were in Omaha. I have no idea who sent it. One of our blog readers. They didn't include their name, but she loved it instantly. She didn't start signing with it for a while, but once she did she just took off. Shortly after that a package arrived at our home, again with no name, that included 3 more DVD's and the 3 books, and the CD's to go along with them. Ashley again loved it all. The books are some of her favorites. They travel with us everywhere. Last Christmas Dave and I ordered her some more of the DVD's from the website, and then just last week one of our readers sent her 3 new DVD's and CD's(thank you Amy! What a surprise it was to find the package at the office! We are so blessed by them.) So to answer the question "How long has she been signing" Its been a little over a year. Had I known anything about the series or the possibilities I probably would have started earlier. "Has she ever said anything?" Yes. She was just beginning to talk before her transplant. It took her a few weeks after transplant to start saying momma again, but once she did she never stopped. Then Ash lost her voice after a cardiac arrest in January of 07. I begged the doctors to tell me if she would come back to us. The only answer they could give was, "Time will tell. We just don't know yet." Well, she did come back to us. Her mind is sharp and active, she just can't speak yet. I think she will at some point. "Do our speech therapists encourage her to sign?" Well, we currently don't have a therapist. When we did they discouraged it. Telling us they would rather us encourage her to use her voice. I understand that to a point, but she couldn't and so signing has given her a way to communicate with us. Actually today we are making calls to get a speech therapist to come out and evaluate her. She seems to be recovering from the pneumonia enough to have some people come back in. We've been home from Omaha for a total of one month this time. She's been pretty sick this whole time with clot issues, and then the cold, and the pneumonia. Today will be Ms. Sue's first time back with us(physical therapy) since Ash's rejection last October.

I think that was all of your questions. I'm so glad you enjoyed the video clip. She's not always so shakey. Like I said, its usually when she's taking Prednisone. It makes her crazy and a little uncontrollable. When she is holding something it is much better, but she couldn't hold on to a book and sign at the same time. When she's not on Prednisone she has no trouble with shaking or controlling her hands. Its a really crazy drug.

Well, its time to get her up, get her dressed, and get to work on this house. Hope you guys have a great day. Take care Trish

Just a litte Clip

Its not the best quality and she's not totally cooperating, but I was so pleased to finally get her to sign for you guys at least a little bit today. She really does know every sign I asked her to share, but she's 3(and officially 1/2 as of yesterday) and on top of that she's stubborn. She blew me away with her new sign. Caterpillar. We actually call it a "callipiller" because Allie coined that new word when she was only 2, but anyway I didn't know until today that she Ash new the sign. I knew she could recognize a caterpillar in a book, but had no idea she could sign it too. Every single day she learns new things. Her mind is so sharp. She is so very smart. She just can't convince the docs who only see her for a few minutes at a time of it. I don't need them to know it because we know it.

The list of words that she can sign is growing and growing. In addition to the words she actually signs there is also a very long list of words that she can recognize and knows there is a sign for even if she hasn't mastered it yet. She loves to point to those words and have me sign them for her. Then there are things she wants to know a sign for that we don't yet know. Each day is new. All day she learns. Thank you to those of you who turned us on to the Signing Time series. Through the years(since she lost the ability to speak. So hard to beleive its been 2 years since I heard her voice) you have sent pieces of it to her and given us advice on how to teach it to her. I truly am thankful for your help. Without it her world would be silent and we would be lost. She loves the DVD's, the books, the CD's, and the flash cards. Its totally amazing to watch her. Our hope is that when she finally does begin to speak that all of this knowledge will give her an edge on developing her vocabulary.



Anyway, enjoy the clip. It sure makes me smile. (Try to ignore all the shaking she does. This is just one of the side effects she experiences while taking Prednisone.)

Apology

I don't really know any other way to do this since I only have contact with most of you via this journal.

I'm going to take a moment to apologize to one of our readers and try to explain what may have happened. I have offended them by failing to post a prayer request for a friend of theirs and I need to let them know that it was in no way intentional. I would never try and hurt you and I have no reason not to like you. So let me say how sorry I am that you were hurt by me. I am happy to ask everyone to pray for J.J. So, let me ask you guys to please pray for this little baby. I don't know much about him, but from what I've been told he is very sick and in need of a liver transplant. Unfortunately, I know how painful it is to watch your baby begin to slip away from liver disease. Its not an easy road by any means. So if you would add him to your prayer lists. I know this reader would greatly appreciate it. I'm not sure how you sent the request, but not all messages get through for some reason or another. If you emailed it to me or sent it through blogger I have no idea what happened to it, but I am sorry you felt I ignored you intentionally. Forgiveness isn't always easy to grant, but if you chose to I would love to have your continued presence her on Ashely's journal. If you can't then again I'm really sorry you have been hurt.

I think its pretty easy to misunderstand some one's intent especially when you only "know" them through a blog, but if you really knew me you would know that the last thing I would want to do is cause you to be hurt. I love our readers. I appreciate their presence here. I probably depend more than I ever should on the prayers you pray for our sweet Ashley, but the truth is I only "know" you through your comments and you only "know me through my postings. Its such a small glimpse into who I am and who you are. I like to think of you as my friends and I do know some of you better because you post more often or share more detail in your comments, but other than a few moments spent in front of this screen we truly don't know each other. I think its unfortunate that we judge each other based on so few words. Again I'm sorry for offending any of you. It was never my intent.

Night and Day

Our older children are as different as night and day.

Allison was home bound for days and days. Homework? The farthest thing from her mind. I guess in her defense she didn't have the ability to see for several of those days, but still she wasn't the least bit interested in keeping up. Now she is paying the price each afternoon with several hours of work, many tears, and a few meltdowns. I think we are finally getting close to the light at the end of the tunnel, but its been an awfully long tunnel.

Blake has been home since 9:30 this morning. Before leaving school he went to each of his teachers to get assignments so that he wouldn't get behind. By 10:30 he was expressing to me that he wished his head would stop hurting so he could get some of the work started. Instead he fell asleep. He has been resting all day and just woke up, came out of my room and asked Allie if he could borrow some paper. I asked him if he felt good enough to do homework yet and he said, "I figured since my head isn't hurting quite as bad right now that I should get started. That way if it comes back I won't have to worry about my homework."

I just laughed. Laying around all day is getting to him. He wants to hit baseballs, attend youth group and be back in school by tomorrow. All of these things are really important to him. I'm afraid its not going to happen. I knew this would be hard on him. I'm not sure how long this stuff is lasting. All I do know is that there are several families in our school with kiddos feeling the same way. Hopefully it won't last too long for Blake.

Going Around

Update: Things are so crazy today that I'm having to laugh about it all. Honestly, if I don't find the humor in this whole mess then I'm going to cry. Once I finally got the keys I was on my way to the school and saw lights in my rear view mirror. Not kidding. I got pulled over because apparently the officer was randomly running license plates of the cars in front of him and mine came back showing an expired tag that hadn't been registered. It expired while I was in Omaha and I hadn't thought about. I received a nice little ticket this morning. He wanted me to turn around and go home, but I shared with him that I was on my way to the school to pick up one kid with the flu and that the one in the backseat was recovering from pneumonia hence all the surgical masks on our faces and scattered around our car.

I pulled up to the school with no intention of getting out of the car with Ash and Blake was waiting just inside the doors. It had been almost 45 minutes since he called. I've never picked the kids up early from school for being sick and had NO idea that I needed to go in to the office. I received a nice little phone call from the school explaining to me that I was supposed to sign something before taking him. Hmmm, I'm really sorry about that. Had no idea. Blake's head was hurting so bad he forgot to tell me until after the phone call came. I could tell they were irritated at me, but what am I supposed to do about it now? Laugh. That's what I'm choosing to do because leave it to me to NOT know the rules to the school that my kids have been attending for the last 2 and 1/2 years. I've been away for a good portion of it and reading the rule book had kind of fallen off of my list of things to do. I know I SHOULD have known, but I didn't. So I'm still laughing about not winning mother of the year award anytime soon. To be completely honest I still don't know the names to the majority of the teachers and parents who I see each and every week in our comings and goings up there. Like I said, no award for me this year and definitely not last and probably not next.



The flu is traveling around the kids school. Blake woke with a severe headache this morning. We tried to talk him in to staying home and he wasn't going for it. Guess who called and needs to be picked up? He lasted about 30 minutes in class.

This is a very scary thing for us. If he has the flu then Ash could be in trouble. Please pray for her protection. She has just now recovered from her pneumonia. The flu could be disastrous for her. Please pray for Blake. He just doesn't know how to slow down. Its going to be a long week for him. One of them will probably have to move out of the house for a few days. Ugh!

Unfortunately, Blake had my car keys in his pocket this morning after getting some things out of my car. He gave them to his dad on the way to school and now he is stranded waiting for me to pick him while I'm stranded waiting for Dave to find a break in his morning appointments to run me the car keys.

Life is never, ever, boring around here.

Its the little things

...like a tiny hand that pats my arm during bedtime prayers.

...like the requests Blake never fails to make to remember his classmate's mom in our prayers.

...like the giggle that erupts after the silliest of Al's comments.

...like the listening to the "chaos" that comes from ALL THREE children in our backseat. ( I still can't help but smile when I look in the mirror and see them all there).

...like a well shot basket in one of the big games.

...like the heart my husband has for a patient who is struggling.

...like the sight of Ash signing for something to eat.

...like the snuggling arms of a big brother wrapped around a baby pickle.

...like the feel of Allie's arms around my neck as I her kiss her goodnight.

...like the smile that crosses Ash's face when I tuck her in.

...like the joy we all share at the smallest of her accomplishments.

...like the feeling I get each time I remember were home.

...like the assurance I have of knowing how much the Father loves me as I experience each of these things in my life. Its the little things that remind me my life is good. Not perfect, but blessed. Not always easy, but so enjoyable. Not deserved, but appreciated.

A lot of things are heavy on my heart tonight. As I struggle to find the words to ease the burden of my closest friend and wish to take the hurt from her, I need to remind myself that He is near. On the days when it seems as though we are in this on our own, He is near. When it feels as though the distant between the Father and ourselves is just to far to walk, I need to remember the road that was traveled to Calvary. NO matter what our struggles are there is none so large, so ugly, so dark, so painful, so impossible that can keep us from the love of our Father in heaven. Is there anything that can offend Him so deeply that He stop loving us? I think there is not. He is near. In the dark, in the pain, in the impossible, in this world, HE IS NEAR and HE LOVES US.

Its the little things that He surrounds me with each day that don't allow me to forget just how much He must love me. He loves you that much too. He really, really does.

If your reading this then I pray you know how much I love you and how much He loves you. Its His eyes and with His heart that I see you with. Your brokenness and your struggle is so painful to watch. I love you and how I wish I could make you see the beauty that is within you. Hang on. I'm praying for you.

So Special

It was just SO SPECIAL! Allison Brooke is such a sweet girl and I love her with my whole heart. She's been through so much over the last few years as she has watched her baby sister's ups and downs that it blessed my heart to stand back and enjoy watching her on her special day. I could never thank Dave's mom enough for all she did for the girls this day and for making this trip happen. The girls had a great time and we had a great time watching their eyes sparkle and the smiles on their faces. We spent 4 hours in the store. Yes, I meant to say 4 hours. It was a girls only day and we made the most of it. Dave and Blake were THRILLED not to be included in this shopping experience. They made us giggle with their oohs and aahs as we showed them each and every outfit that Allie chose for her doll Mia.

Ash had a really good weekend too. She had her daddy's full attention and she made the most of it. He and Blake took really good care of her and it allowed me to focus entirely on my Allison. I don't leave Ashley Kate very often and it was really difficult, but so worth it to see Allie have me all to herself. The boys and Ash spent the Saturday afternoon at the practice field as the Tarheels had their first practice of the season. Only 3 weeks to go until the opening tournament. Blake was SO happy to be back with the guys and to have the bat back in his hands. Dave's report was that the boys were "crushing the ball" and looking right at home as they took the field. We are so excited!

Today Ash is having Grandma come to sit with her while I pick up Blake from school for the conference basketball tournament. Currently they are the top seed in the tournament. The Sentinels have only lost one game the entire season. I'm excited about watching them play over the next two days. Basketball is my first love and I miss coaching it more and more each season. Next year Allie will be playing junior high ball for the school too and I can't wait. GO SENTINELS!

Ashley Kate looks good today. She is recovering nicely from this pneumonia and has completed her IV antibiotics. That makes life a little easier for us. She still has a small cough and a little mucous each morning, but other than that is doing well. Her feeds are still at 65mls an hour and she remains on TPN support. The bowel is slow healing and her stool output remains high. Other than that I'm super pleased with where she is right now. She is up and playing. Signing more and more each day. Getting stronger and looks as though she might become interested in moving again soon. She continues standing in her immobilizers each day and is now putting up quite a protest about the whole thing. Our hope is to have her standing independently by summertime.

Well, thats the scoop. Lots of things happening this week. Its beach week in our office and that puts an even bigger smile on Dave's face as he leaves for the office each morning in his Hawaiian shirts and flip flops. Hope your weeks has started off well and that you are feeling as blessed as I am today. Nothing makes me feel better than looking around and realizing how good God is to us. Have a great day. Trish