"Look what I found"

Early this morning on his way through the nursery(he has to pass through it to get in or out of his part of the house) Blake must have stumbled upon our smiley baby wide eyed and ready to start her day. He emerged from there with a soggy diapered, crooked pig tailed, purple pj'd, four year old with a smile as big as her face in his arms. He announced, "Look what I found", and my heart swelled. The sight of her smile and the sound of "bubba" drew him in and he rescued our little one from her crib. He brought her over, sat her next to me on the couch, and watched her snuggle in close pushing me out of my spot. He smiled wide, shook his head back and forth and said, "She's just really, really cute." Again, my heart swelled. Its going to be a beautiful day. I can feel it.

I wish you could see the mess in her nursery this morning. I didn't remember it looking like that. I asked what happened and he shared with me that last night she was signing for a book and he told her, "you have to go get them for yourself." So he sat her down across the room from her book shelves and she fussed at him a time or two and then proceeded to scoot her little self all the way over there. He told me he watched her pull out every single book and look at the cover to see if its the one she wanted. She would pull it off, hold it up, then throw it behind her and look for another. It took her a little while to find the right one, then he said she just sat there for an hour in her pile of books and read the "one" she had been looking for(Dave and I went out to see a movie last night:) It made him really proud to watch her with her new found independence. He told me he sat there on the nursery floor with her and watched the whole thing. That made me smile. He's proud of her. He loves her. He tries so hard to be tough with her, but his heart is very, very tender toward his little sister. He is an encourager and an optimistic when it comes to Ashley Kate.

Blake's going to be 14 this week. I can't even believe it. I am so thankful for this child. He is a joy to us. Always has been. Not a difficult day in fourteen years of parenting him. Honest. I'm so proud to be his mom. So proud of who he is. He has his dad's heart and my competitive nature. He is well rounded, driven, compassionate, loyal, smart, athletic, and fun. I love him so much. Its going to be fun celebrating with him this week. Really, really fun!

Three Years, Forever Grateful

September 26, 2009

Its been three years, and I know you haven't forgotten. We haven't either, and I promise that we never will. I woke this morning just moments before the time and thanked God that I didn't oversleep. I laid very still just remembering the moment that the call came in and as the clock hit 7:46a.m. I smiled as tears formed in the corners of my eyes. "She's here. She's still here. Thank You Father that she is still here."

I wonder if you woke this morning and wished that "she was still here. Why God is she not still here?" My heart broke for you. It still does. I don't know how you found the strength to even wake up this morning. I just hope you could feel His presence wash over you as I prayed for you. I truly hope you did.

What do you say when what you feel in your heart is so much more than gratitude? Thank you seems so insufficient. It doesn't go far enough. It doesn't reach deep enough. Surely it can't mean enough. I feel so much more than I find the words to describe.

I spent today looking into Ashley Kate's eyes. I found myself peering as far into them as I could and wondering what part of your little one can be found in them. Her eyes sparkle. They shine. I would even say that they twinkle more than any star I ever gazed upon. I know its partly because of the piece of yours that is inside of her. I just believe that it is. If you could only know her. How I wish that you did. She smiles so wide. She giggles so much. She lives so fully. I pray that knowing these things would bring you some amount of peace.

If I could know you, had I known you in real life and not just in my heart I would have come to you today and hugged you so tightly. I would have brought our sweet Ashley so that you too could peer into those sweet, sweet eyes. I would have tickled her so that you too could hear the joy spill out of her. I would have. It was my hearts desire. Just to allow her to be close to you so that you could see the gift you gave that day.

As my heart felt joy, I know yours felt sadness. As my heart praised our God, I imagine yours might have questioned. As my heart ached for your loss today, I know yours broke more than I have ever known. I'm sorry for that. I really and truly am.

Today we remembered your little one. Ashley Kate sat outside in the wonderful autumn air and released three balloons in honor of the life that gave hers to her. One... two... three... she let them go and she watched as they floated toward heaven, toward your child. She's had three full years of life because of what you have given. I just wanted you to know. I'm not even sure why. I guess I just needed to say "Thank You" once again, and let you know that we remember. We always will. God bless you today as you remember.

A new day

Ashley Kate slept for 14 hours. 14 hours! She woke this morning with a sparkle in her eye, an ornery streak, and a smile. I don't know if that means things are going to be better, if whatever it was is over, or if its jut a fluke, but I do know that I really appreciate your prayers for our gherkin. I hesitated to post about her not being well all week. You know that whole put it out there thing that haunts me? Anyway, she just wasn't improving and so I did and I knew you would pray and this morning she seems to be a different kid. So, thank you. Thank you for still being around, for continuing to check on her, and for your faithfulness in praying for her. I don't know what we would do if we didn't have this opportunity to share her with all of you. I really don't.

Dave and Allie have already left for church, Blake is on his way back from a youth retreat this morning, and Ash and I are confined to the house. Yep, its that season again and thats what she and I do. I try to keep her home, away from the "public" and all the germs as much as possible. She does get out to ride in the car with me as I shuffle the kids around each day, but other than that she is pretty much at home. Dave pushed her around the outside of the soccer fields yesterday during Allie's game just so she could enjoy the sunshine, but other than that she's been in the house for the whole week because of the rain. Just hanging out and feeling icky.

After church and after Blake arrives home we plan on doing some work at the office this afternoon and then I think I'll get a head start on the laundry for the week. I need to lay out the kids schedule for the week so I can figure out which direction I'm heading and how I'm going to shuffle Ash with all their activities. Then I'm going to sit and enjoy whats left of Dave's day off before he heads back into a busy week. Thats my plan, and I plan on sticking to it!

I thought I'd leave you with a few pics of Ash riding Friday morning. She wasn't quite herself and was feeling pretty yucky, but she perked up once she got settled on the horse and we were all so surprised at how well she did. She seemed to enjoy it and we hope it becomes one of her favorite activities. The benefits of riding therapy could really bring about some changes in her development and we are so hopeful to get a full season in for her this year. Enjoy!


This first picture I included just so you could see how big the animal is compared to Ashley Kate. I know she's tiny, but when I see her on top of the horse she looks REALLY tiny to me. Her horse is actually a pretty small one, very calm, with a pretty soothing gait. Each of the horse has a different personality and the trainers match the horses personality with the needs and goals of each rider. Its really amazing how it all works.


This next picture shows you the whole team during the session. There is a therapist, a volunteer, a trainer, and a rider. Our volunteer in on the left side, our therapist on the right, and the horse trainer in front. Its really very safe. Trust me, I was SO nervous about the whole experience until they assured me she was safe. Once I watched a session I was convinced.





This picture made me laugh. Ashley is asking them to please make the horse go. She wasn't ready to stop. You can see she's not feeling that well, but she was enjoying the therapy as long as the horse was moving. When the horse was instructed to stop, she would sign "please" over and over again trying to convince everyone she wanted to go. The starting and stopping of the horse is an important part of her therapy. She has to adjust her balance each time the gait stops and then again when it starts. Ash did so well. Last year this was very, very difficult for her, but this year she was a pro. Just showed us another step in the right direction for her. She is making HUGE progress. I know it sounds like no big deal, but it really is a big deal. We were very proud of her.


The end. The session was over. She was sad which we took as a positive sign. Our hope is that when we return each week she will continue to enjoy it. If you are interested in seeing the facility or in learning more about the therapy you can go here: windridgetexas.org

We feel so blessed to have the opportunity to let Ash experience this form of therapy. We have high hopes that it will do big things for her.

Not right

She's not right. Something is still not well with her. My heart is struggling today as I fight the urge to allow fear and past experience to take over. I just want whatever has invaded my beautiful girl this week to disappear.

Ash hasn't had any more fever, but she is having a few episodes of vomiting. She is clammy and yucky. She is so fussy and unhappy. She's not her playful, smiley self. Yesterday her stool output was too high. She required replacements for the first time in months. She is signing "hurt, sorry, hurt sorry" over and over again and continues fuss and fuss. I'm hoping its just a stomach bug, but my heart has a hard time getting believing thats all it could be.

Its just been so many weeks since we have seen her be achy or unhappy. It is breaking our hearts as we watch her just be plain old miserable.

The run down of the week was something like this. Fever came on quickly Tuesday night as we celebrated Allie's Student Council Election at dinner. Ash sat very still and then began projectile vomiting. It honestly came out of nowhere. We had no warning signs. She spent the evening feeling weak and yucky. I canceled therapy on Wednesday morning due to the return of her low grade fever. It came and went quickly all day Wednesday. Then Wednesday afternoon she had one episode of projectile vomiting. Thursday she just felt yucky. No smiles. No giggles. No playing, but no more fever. I canceled all of her classes and therapies on Thursday as well. Friday morning we had to wake her very early for lab draws. It didn't go smoothly for her. She began fussing and being miserable from that point on. I expected her labs to pretty off, but was surprised when most of what I thought to show up did not. It did show us that her platelets are low. Lower than they've ever been post transplant and that her liver enzymes were elevated. past that nothing is out of the ordinary. We went ahead and took her to ride that morning. At first she was unhappy, but took to the horse rather quickly and seemed to perk up a little bit. She was fine as long as the horse was moving, but once it stopped she would be very upset. For most of the day she was just unhappy. Grumpy, fussy, miserable. Very out of character. From 9am till 9pm she was 120ccs over on her output. I replaced it over night. She had a few very small vomiting episodes through the night, but not much to be concerned over as far as fluid losses go. Her output the following 12 hours was very normal. Still today it remains normal. This morning she's just fussy and clammy. Not herself at all. No fevers, no signs of infection from her blood work. Just a personality issue from not feeling well is the only problem we can find.


Its really hard for Dave and I to not see her smiling and happy. We have enjoyed her so much the last couple of months. Its also hard not to allow our fears to overwhelm us. Its that time of year again for her. The last three years have been tough on her during this season and I know what can happen. I'm just praying it hasn't begun and that it doesn't. I am so looking forward to having her happy and healthy this fall.

I want all to be right with her. Its the "not right" feeling and behavior that has us on alert. We are watching closely and praying this is just a stomach bug picked up from all her contact with her teachers, therapists, or perhaps even something the kids may have brought home from school. That in itself is enough to make things go south. Remember any ramp up in her immune system can bring on an episode of rejection.

I have not decided what next weeks schedule will be. If she doesn't improve we may have to keep her classes and things canceled until she is more up to it. Although I hate to stop her progress, I find that we are in such a hard place.

More Rain?

Honestly, I like a good rain. EVERY NOW AND THEN...but for the 8th day IN A ROW? Its getting a little discouraging around here. Just a little. If it didn't have a way of wiping out all baseball tournaments in every vicinity around us for the last two weeks I might like it a little more, but we are going through withdraws in this house.

To top off the discouraging feeling we are trying to fight off this morning its lab day for Ash. That makes me crazy. It really and truly does. To know that for the rest of her entire life she will have to be put through it makes me crazy. I hate that she has to be stuck. HATE IT. I'm trying to concentrate on the knowledge that she's here and that its necessary because of the very transplant that kept her here. We are rapidly approaching the three year anniversary. Can you even believe that?

After her lab draws this morning we are headed out, in the rain, to watch her ride for the first time in almost a year(the arena is completely covered. Its a beautiful facility!). I wonder if she'll remember how much she hated it? She's done an awful lot of growing up this year so she might surprise us and like it. Maybe? I'll be sure and share some pics and maybe even some video later on today.

Ash has been battling a fever since Tuesday evening. Not really feeling her best so we have taken it easy the last two days. I cancelled all her classes and therapies to give her a chance to rest. The up side of her being well and stable is that we get to bring in the teachers and therapists to work with her. She is learning and doing so well. Getting stronger and stronger. The down side is that her system is still weak. It is still suppressed and she is very susceptable to getting sick from all the hands that are on her. Everyone washes up, uses sanitizer, and trys to be careful with her, but the reality is she's going to get sick. Its what happens with transplant kids. This morning she seems to be fever free. She's pretty sleepy and suspicious about being loaded up in the car this early, but looks to be feeling better. Her labs will tell us a whole lot more.

So the rain can stay I guess. We play soccer in the rain(Allies team won 6-0 last weekend and play again tomorrow). Play football too(Blakes team won 16-0 last night. It was really fun). Baseball? Not happening. Since the tournaments are cancelled it doesn't really matter if it dries up this weekend. We'll just take our umbrellas to the soccer field and enjoy watching Al do her thing. Hope your weekends are blessed. Take care. Trish

Oh, yeah...

...I forgot to say "just look at those straight legs!" She is starting to sit more and more with her legs extended out in front of her and no longer curled up. We are convinced this is from all the standing she is enjoying.

On Sunday Blake timed her standing in front of her ball for 16 minutes and 7 seconds before she signed she was all finished. From 5 minutes the previous weekend to 16 this last.

Just forgot to mention those in the last post.


Yeah, I'm smiling:)

Praise

This is where I left her this morning while I ran to the kitchen to fill a new feeding bag.


When I came back into her nursery this is where I found her.



All the way across the room, playing on the window sill, behind the rocking chair that was behind her in the first photograph. I called her name after snapping this photo and she turned, waved, and then smiled at me as if to say, "Yeah, that's right, I got here all by myself."

Praise God!

Sunday she ate 170 calories by mouth. Yesterday she had another 90.

Praise God!

Last week she said the word "Up". Said it not signed it. In front of her teacher and her speech therapist. Two days ago I thought I heard her say "Bubble", but dismissed it as wishful thinking. Again, last night Dave and I thought we heard it, but still weren't sure. This morning in class the teacher pulled out a bottle of bubbles and we both heard her say, "Bu bble". Two distinct syllables. I asked, "did she really just say that?" "YES!!, SHE SAID IT. THIS GIRL JUST SAID BUBBLE!" was the answer I was given.

No explanation other than this,

Praise God!

Things are coming slow, but steadily coming. Every day something new is happening in Ashley's world. I can't say for sure that she will ever "live" completely in ours, but her world is expanding and all I can say is "Praise God! Praise Him for this miracle child. This child that I am privileged to call my daughter.

Just this summer we have now heard her say four words. Just a whisper on my shoulder the word "mama". An announcement each time he enters the room "Bubba". Laying on the rug while her teacher, her therapist, and myself were talking, she sat herself up and said "Up" with a very audible and distinct "p" sound. Then yesterday and today the word "Bubble".

Praise God, she's moving, she's eating, and she's speaking. Nothing consistent, but enough to give us all such hope. She's amazing. She just is.

Her Team

It consists of some pretty amazing people and we are so excited for her. Ashley Kate is surrounded by a group of teachers and therapists who all have a common goal in mind. Progress. Its humbling for us as her parents to sit in the midst of this group of people who want so much for her just as we do.

She has her private physical therapist, occupational therapist(who is fluent in sign), and hippotherapy therapist all through Kidz First Therapy. She also has her home bound pre-K teacher, physical therapist, speech and feeding therapist, and occupational therapist from the school coming to our home each week as well. Its a total of 9 sessions in 5 days each and every week. On the weekends we play and reinforce all that she is working on throughout the week.

Ash is happy. Feeling stronger than I can ever remember and making huge strides each week. She works so hard. She really does. Still opinionated and stubborn(I wouldn't have it any other way), but as sweet and silly as can be. She's beautiful and amazing. I sit and play with her each day, listen to her giggle, watch her sign and communicate, and I am in awe of all that our God has done in this child's life. I do my best to take nothing about her for granted. She is a gift, was given a gift, and continues to give gifts to all who work with her.

Our meeting yesterday was mostly good. Everyone was very positive and encouraging. They all set goals for her and Dave and I agreed with all the goals that have been set. At one point they gave their assessments and used a developmental age that shot me through the heart as though it were a knife. I could feel myself cringe inside and was hoping that it was not visible on the outside. The protective instincts kicked in and I so badly wanted to announce to the "world" that they had no idea what they were talking about. I wanted to yell, "do you have any idea what she has survived? do you even know what a miracle she is? do you know how blessed you are to place your hands on a real life, living, breathing miracle? Instead I sat there in my chair sitting on my hands as my insides raged against all the "assessments" and all the "necessary" paperwork. I so desperately wanted to argue, to insist, to inform, to anything, to them all, but it wouldn't have done any good. They were only doing what they were trained to do and they were only following the criteria they had been taught to use when assessing a disabled or a delayed child. They don't mean for any of it to be hurtful or offensive. Its just that as a parent of the child being discussed it does hurt. Plain and simple. It just does. It never stops hurting. It never becomes easier to hear. It never sounds "ok" to our hearts.

Her team is amazing. All wonderful professionals who want the very best for Ashley Kate. I'm not offended by them in any way. I'm offended by the truth. The truth that even though I know is the truth sneaks up on me when I'm not expecting it to. Still I refuse to have that truth define my daughter. I won't slap labels on her. I won't run from doctors office to doctors office just to have a diagnosis. Its not necessary. I will not allow her to be put in this "box" or that "box". She is who she is. She is more than amazing. More than intelligent. More than talented. More than capable. More than I had ever imagined.

So what if we didn't get to start playing soccer this year, it doesn't mean we won't ever be watching her kick that ball across the field. Just not a four. So what if her backpack contains a feeding pump and Neocate instead of crayons and folders. Someday it just might hold those things. Just not this year. Not her pre-k year. So what if she's sitting in a chair this year instead of skipping across the playground. She has time to learn to skip. I close my eyes and try to imagine just what that image might look like. Pigtails bouncing up and down. Someday, just not today, when she's four.

Her team is ready. They've all been assembled. They are all excited to see how much progress she'll make this year. Her mom and dad are ready. We've been waiting for these days to come. The days where she's well enough, strong enough, and home long enough to really begin. Blake and Allie are ready. They so desperately want more and more and more for her. If this is all there is then they love her as she is, but they both believe in their hearts that there is so much more just waiting for her to discover. Its going to be a good year. Her 4th year. Her 3rd since transplant(wow, that amazes me every single day). Her pre-k year.

"I'm really starting to believe...

Ashley was busy standing and entertaining us all last weekend in the RV.
She kept us laughing as she signed and danced to the music. We love this girl! Just look at those legs stand there all by themselves!

...its no longer if she'll ever walk, but when."

I looked across the room at her daddy and nodded my head. "You really believe she's going to?"

"I do and I think its going to be soon. I'm not so sure about the talking, but I'm confident she's going to walk."


I'm going to admit to all of you that I'm starting to think that way too. Crossing over into the land he lives in, you know the one, "the land of rainbows and daisies" is kind of fun and exciting. For the first time in her life I'm starting to believe that our girl will walk. Someday. I think its that belief that made it "ok" for me as I sat and watched her be measured for a new wheel chair last week. I just kept reminding myself that this was so temporary. She won't be in that chair forever. I just don't believe that she will, and even if she never makes it out of it on this side of heaven I KNOW that she won't be in it for eternity.

Its heartbreaking and disgusting to admit, but Dave and I have had hypothetical conversations about what we would choose for her if we could. Able body or able mind? What would we wish for her if we could? Obviously we wish for both, but if you could only have one of those things for your daughter what would you choose. We both agreed we would want for her mind to be whole. For her to have the ability to think, to communicate, and to process normally. The able mind far outweighs the able body in our hearts, but we still desire for her to have both. There are no crystal balls and we have no way of knowing if she'll get either of the two, but she is definitely making huge strides toward an able body. I wouldn't wish these conversations or the silence that immediately falls between us after we've had one of them on anyone. I really wouldn't. Its one of the tougher parts of being us, but lets go back to talking about her progress.

Ashley Kate wants to get up and go. She is no longer happy and content to just sit and play. She has learned to sign "stand up" and thats what she wants to do ALL DAY LONG. Its an incredible feeling to look at her and see her opening up to more of the world around her. I can't find the words to explain it, but it is incredible.

She is not able to stand independently yet. She needs for us to hold on to her underneath her arms or to help her find stability in something behind her, but as the picture clearly shows she is standing and weight bearing in her legs, ankles and feet. We know she is going to require some type of bracing and we have asked for the referral. Nothing has come of it yet, but we are hopeful to get that referral so that she can be evaluated and fitted. Her right ankle isn't quite right. She struggles with it rolling to the inside and it is going to have to be corrected before she is able to master walking, but as we wait for that referral to come in she continues to use it. She is getting stronger and stronger every day as she works. This weekend we timed her and she stood for 5minutes and 36 seconds. OVER 5 MINUTES on her own with just the support of a ball behind her. I think its more her "security blanket" than anything, but for now we'll take what we can get.

Tuesday in therapy she took 5 steps. Tears burned my eyes as I watched her pick up her right leg and step forward with it completely unprompted by me. Her left leg doesn't work quite right and it has to be dragged along for her, but she very clearly and distinctly picked up her right foot and stepped forward with it. Do you have any idea what it feels like to experience something that HUGE with your child? I never dreamed this is where we would be. I never knew what one little step forward at four years old would do to this mommy's heart. It brings me to my knees. It literally takes my breath. I would do anything for this child. I would give her my legs, my ability, my everything if only she could skip all of this struggling. How I wish I could do this for her, but I can't do it. There is absolutely nothing I can do to give this to her. So I smile, I encourage, I cheer, I assist, I applaud, I praise, and I pray for her. This is what I do. Each and every day of her life.

I wish you could see the look in Blake's eyes, or the smile on Allie's face, or hear the excitement in Dave's voice. I wish there were some way to share with you the raw emotion that we experience as we celebrate with Ash as she stands up. I've never appreciated anything more in my entire life than. She brings such joy to our home. The twinkle in her eye as we applaud wildly for her is so bright. She is SO proud. I love her so very much and I'm so grateful for her life. Even with the struggles, I am grateful. She has changed this family. She makes us "us", and without her and all of her struggles we wouldn't be who we are.

Tomorrow I will attend a meeting. I'm going there to discuss what Ash can do and I refuse to talk about all that she can't. I just do. I can't change those things, but I can work with what God has given her. We will lay out a plan for the year. Her teacher, her therapists, the school system, will all set goals that we will work together on, and for the first time I'm excited about one of these meetings. God has blessed us with a wonderful teacher and I KNOW that she has experienced some amazing things with our Ashley the last 3 weeks and she's ready to share them. I'm so excited to hear her speak.

Ash is amazing. She really is. She's happy. So very happy. Yes, there is still a long list of things she can't do or things she has lost, but the list of what she CAN do and things she has gained is growing longer and longer each day. I love her and I'm humbled to be her mom. I just am. I wake up every day and wonder "how I got so lucky". Why am I so blessed?

Its coming...

...it really is. I mean, at some point I will have to slow down long enough to type some kind of coherent posting on this blog. Instead of taking the time to do that right now, I thought I'd just check in and say "Hi" to let you all know that Ash is well and we are fine.

She is currently resting in her crib after finishing up with her 3rd hour of therapy today. That's right, 3 HOURS today! She is amazing. Honestly she is, but very worn out. While she is resting in this 45 minute period before we start running after the kids, I have lit a delicious pumpkin pie Yankee and put on a relaxing instrumental CD and I'm now sitting here trying to catch my breath before the evening run has to begin. I'd do an official post now except that my brain is fried and I can't seem to write a complete sentence. So, I'll put it off yet again.

Just thought I'd say hi and confess to you all that I have surrounded myself with all things fall like inside our home(explanation of the pumpkin pie Yankee. I can't wait for the Christmas Cookie to come out) even though the weather outside is like still around 100 degrees(not really but too close to care). The mums have arrived in the stores, but I have fought the urge to buy and plant until the weather proves to me that it actually is moving toward fall. No need to waste my money and burn them all up. In lieu of planting my fall gardens I have settled for yummy candles, indoor decor, and soothing music to put that smile on my face that always arrives around the fall and doesn't leave until the Holidays are over. Its my favorite time of year and I can't keep from smiling even though the schedule is grueling for us at this time.

Hope your all well. Pictures of Ash standing to come and lots of details about her progress over the last few weeks in therapy. Can't wait to find the time to share. Take care guys. Trish

I guess...

...There is a first time for everything. Right?

Tonight we are on our way to watch Blake play in his first EVER football game. Like I said, "A first time for everything." I will be totally honest with you and let you know that I NEVER expected to be on my way to watching him do this. Just never crossed my mind. He's a baseball player and every one who's ever known him knows that. Tonight were going to see if he's a football player too. Kind of cool I guess.

I know NOTHING about the game. I'm still not sure where he's going to be on the field. Somewhere close to the end of the line on offense and in the back on defense. Thats what I've been told. This is going to be fun.

I dropped him off at the locker room a little while ago and on the way there I asked him if he was excited or nervous or anything. His answer?

"Not really anything. I mean its not a baseball game so I don't think I'm excited, but I guess its something to do tonight. I'd rather being playing football then sitting at home studying. Its still a sport and I like playing ball."

So there you have it. I asked him what everyone has been asking me today, "Is he excited?" and that was his answer. I think he'll have a good time.

I've got her pigtails pulled up and two huge raspberry colored bows in place so I guess Ashley Kate is ready for her first football game too. Not sure how long she's going to last, but we are going to attempt it.

Dave and I are excited. Anytime you get to spend an evening watching your kid play ball is a good evening in our book. Even if its not baseball. We are super proud of him for giving this a try and for making the team. This is a new adventure for us all and who knows if he'll ever play again after this season. I think he might, but we'll just have to wait and see.

I'm off to the football stadium. See you guys later.

Tonight

My prayer tonight is that today and all it held for our family will "grow strangely dim in the light of His glory and grace." We need to do nothing more than be still, look into his face and allow the rest to disappear. My hope is that we can find rest in Him.

Some days I don't know what else to do. Its been one of those days for us.

The important things that I'm reminding myself of are these, we are all here together in our home and He loves us. Not one thing will happen, not one tear will fall, not one concern will go unnoticed. Thats what IS important. The rest of it doesn't even matter.

Sneezes, Snoozes, and Such

Our sweet Ashley is struggling with a head cold too(Blake is feeling much better). I haven't mentioned it in the journal before now, but she's had it for over 3 weeks. Its just a fact that transplant kids don't "get over things" as quickly as non transplant children. I was hoping for this not to be true this time, but alas it holds true. She still has the sneezes, lots of thick snot(sorry for being so graphic) and it causes her to "snooze" very loudly once she finds sleep. She had seemed to be holding steady over the last few weeks, but the past two nights she is struggling to find rest. Her nose is stuffy and yucky making it difficult for her to breathe. At this time she is snoring, loudly and breathing hard. I don't fear that anything other than this cold is brewing. Her chest is clear, she does not have a cough or anything like that. She has no fever. Just trouble breathing through her stuffy, stuffy nose. I'm allowing her to sleep as late as she possibly can. She has OT and sign this morning at 11 and then a PT evaluation from the school district this afternoon at 1pm. I was tempted to cancel on her behalf, but thought twice about it. It seems that once she is up, bathed, bow in place, etc. that she does a little better and even though I know she could use the extra rest I also know that she needs the therapy as well. My plan is to not wake her until 10:30 this morning. Hope I'm making the right decision.

In other news, explaining the "such" in our title, Blake made the "blue" football team at his new school. Thats good news. There are two teams. I think the blue team is considered the A team or first string. Thats what I've been told by friends. So he may turn into a football player after all. He is playing wide receiver and safety. I have no idea what either of those things mean except that one is on the defense and the other is on the offense( I'm sure my good friend Lou Ann is smiling at me about now. Her son is a college football player). I'm really proud of him for going out there and giving it his all. Even though he doesn't really like football I knew it wouldn't keep him from working as hard as he possibly could. His first game is this Thursday and I have to admit I'm looking forward to watching and trying to figure this game out. He is itching to play baseball. We always take the month of August off and so his first tournament of the fall season is a week from this Saturday. Not playing in August is considered a tragedy in his mind and he can't wait to get back on the field.

Allie had her first practice of the season with her new soccer team. As always she was incredible. I love to see her play. She jumped right in and I think it should be a good fit for her. She knew no one and had never met the coaches, but I don't think it will take her long to find her place. She loves the game and is absolutely fearless. She came home from school with a smile on her face as she shared a story about playing soccer at recess and facing another player(the star player on the boys team according to Blake who used to play on that team) down. From what I hear only one of them was left standing and I'll just tell she isn't the one who ended up without the ball. She had a grin from ear to ear and so did her brother. He followed up her story with this little comment, "They should have let her play, they sure do need her on that team. " To which I had to laugh. I just did, cause I think he's right.

We are experiencing some changes in our office causing Dave to have to be at work for 12 or more hours a day lately. Its not been a lot of fun to be him, but I am so grateful for the care he provides to our patients. God is using him and our staff to change people's lives and I'm humbled as is he for the opportunity he is being given. I know that even though this is difficult on us all(especially the children who are missing out on time with him) I believe that God has something in mind. Please join us in prayer as we seek to find the right staff members to add to our team. It takes a special person who loves people and who is dedicated to helping others to make our practice work. I'm praying God leads us to them and them to us. In the meantime I'm praying for an extra measure of strength and energy for Dave. He is passionate about his work and his patients. I love that about him!

So that's whats happening in our piece of the world, sneezes, snoozes and such. Lots of all of the above. Hope your piece of the world is just as you like it and if its not then I hope that the Father is carrying you through. Take care my friends. Trish