FYI

I keep forgetting to mention that our website, www.ashleysstory@yahoo.org will be closing on or around the 1st of September. There are no fundraising opportunities going on , no real updates being made to any of the pages, and not much happening on the main site anymore so we decided to close it once and for all. We did not renew it and so if this is the way you come to our journal then you will need to begin accessing it by going to www.ashleyadamsjournal.blogspot.com

I hope this isn't too much of a problem for anyone. You are welcome to continue reading our journal through blogger and we would hate to see you go. I just wanted to let everyone know thats what is going on if you try to find us and can't.

I will post another reminder soon and continue to do so over the next week or so.

Thanks so much for sticking with us. It still humbles me to see the 1200+ hits a day and to hear from each of you who take the time to comment. Your presence is very much appreciated. Thanks again. Trish

Out "There"

Ash and I have been running Blake and Al around to all of their activities all week long. Its been a little crazy as we get adjusted to all the new schedules. Trying to get one here and the other one there is almost comical as we navigate our way around town trying to figure out what will be the best route to give us the most time. Anyway, she loves getting out and its a blessing to have her well and home so that she can do all this running with us. A blessing so big that I almost tear up each time I see her smiley face in my rear view mirror.

Along with the running around we do each afternoon and evening there are a lot of emotional situations I am learning to overcome. Things that will get easier with time(I imagine)as we all adjust to what the world "out there" thinks of our little pickle. She is now riding in her new stroller (even though Blake and Allie aren't thrilled about it). To be honest it has taken a couple of months and a few modifications for Dave and I to get "thrilled" about too. I have to admit that it has been much easier to get her around since we started using it. Its not really a wheel chair(because it doesn't have the large wheels) but its not really a regular stroller either. Its a cross between the two. I think thats what makes it so hard on the kids. We've had few talks about it. Like acknowledging out loud that "yes, Ashley Kate is handicapped". OUCH! Its something we don't see because I think our gratitude for her life and each accomplishment is just so large, but its true and when we go outside our little circle, when we go "out there" it is something that has become obvious to us by the way people react to her.

Tuesday evening was such an emotional experience for me personally. The reaction to Ashley Kate started at one end of the spectrum and I found myself in the car with my mind racing and my heart aching beyond description to a couple of hours later my heart bursting with gratitude for those that God has placed in our circle who LOVE our Ashley and see nothing but an amazing little girl. It started on the soccer field with Allison's practice. A new team, a new coach, a new set of people. No one knew me or Ashley as we sat on the sidelines trying to pay attention to Allie and not the little kids who were gathering in a huddle trying to figure out why Ash was doing the things she was doing. Ashley was being wonderful, but I can see how confusing and interesting it would be to those who don't know why she is the way she is. Anyway as Ashley Kate played she was humming, and whispering, and grunting, and signing. I encouraged each sound and acknowledge each sign as we had our little conversation. She was happy. Smiling and giggling. Little ones just learning to toddle were constantly being pulled away from us, older children were whispering and wondering why she couldn't talk and why she had to sit in that "chair". Parents apologized to me because they didn't really know what else to do, and I reassured them it was ok. By the end of it I was an emotional wreck, because it really wasn't ok. It was painful. It was awkward. It was just hard. I felt guilty for reasons I don't really understand. Maybe because I was thinking things like "if she could just talk, or if she could just get up and walk" maybe... It was crazy! I am absolutely, 100% not ashamed of who she is. She is beautiful and amazing and intelligent and wonderful. Why in the world would I being trying to make excuses to myself as I drove away from that field? Anyway, it was emotional.

The next spot on our agenda was the baseball field. We got Ash loaded into her stroller and as we approached our friends sitting outside the fence watching our boys hit the smiles on their faces and the excitement in their voices as they asked when she got her new wheels and how she had been doing absolutely melted me. We were no longer "out there" where she is different, but we had made it to the safety of our world where she is loved. Oh what a difference! They reassured Allie that it didn't make her look different, that it was just a stroller and that they were so excited that Ash could sit up in it like a big girl. It mended my breaking heart in a way that I desperately needed. Now I struggled to fight off tears of thanksgiving rather than frustration.

The thing about our Ashley is that she looks "normal". Until she is approached and spoken too you wouldn't know that she is different from any other 3 year old. She is smiley and adorable. She has caught up in weight and in height. She plays with toys and enjoys life. She is so, so happy and you would have no idea that she struggles in a few areas. She is no longer on her feeding pump during the daytime hours so we don't have anymore questions about her tubes or her pump. She looks so good and so normal. She's just Ash. To us and to our friends she is normal. They celebrate each and every bite of food, each and every sign, each and every milestone right along with us. They love her and appreciate the fight she has fought. Oh, what a gift it is to be surrounded by those who love her.

So along with our adjusting to our new schedules we find ourselves adjusting to being "out there" this year with our Ashley. I promise you it is better than a PICU, better than a hospital, better than being miles and miles away from all the running and going that is the norm for our family. It is wonderful to be able to load her up and take her with us. It is fun and it is a blessing. It may just take me another time or two of going "out there" to adjust to our new "ride" and all the questions that our noisy 3 year old seems to bring about. If they could know how precious that voice and those noises are to this mom's heart!

Look what she's been up to...

While mom has been recovering, Ash has been busy learning to swim. Over the weekend Dave and the kids got her ready to take the plunge and we all expected her to put up a fight. She HATES new things. Things like water, grass, concrete, and new surfaces tend to freak her out and make her scream. Much to our surprise she LOVED it! We had such a good time with her and we are looking forward to getting her back in over the upcoming weekend. She stayed in so long her little toes were wrinkly! It was so cute.

I'm finally starting to feel a little more like myself. Its been a slow recovery and thats harder for me than the whole not feeling good thing. Details of whats been going on are not really necessary because when we say it loud it just makes it way too scary. So enough of that. Just know that we are taking care of it and I'm extremely thankful to have Dave's knowledge and advice during this time. Thanks so much for your prayers.

Ash is doing well. She had blood drawn this morning and that's always a nightmare for us both. I couldn't sleep all night as I anticipated the sticks and pokes she would endure this morning. Her blood work looks a little out of whack, but I haven't heard from her transplant doctors yet. I'm expecting a call from them to hear what changes they would like made. Our hope is that she will be able to go to monthly labs from here on out, but based on this mornings results I'm not that hopeful.

We are hoping to get an approval for her to begin hippotherapy in early September. Dave and I are really looking forward to seeing what might be "awakened" inside of her nervous system as she rides the horses and feels the different movements. We have read some incredible things about this type of therapy and are anxious to get her started.

Well, that's all I have time for right now. Allie has soccer tonight and Blake has baseball so Ash and I will be running between the two fields. I will share more about our "week off" later on.

I've missed you guys. Hope your all doing well. Trish

Silent

Just wanted to let you know our blog may be silent for a few more days. Trish has been down since Wednesday afternoon and it is going to take her a few days to recover. She struggled through her responsibilities with the children on Thursday, but is now going to rest for the weekend. She will update as soon as she is able. No need to worry. She will bounce back soon. Thank you for your prayers.

Its Raining, Its Pouring...

... oh how I WISH we were snoring(or at least sleeping).

Ashley Kate's new found mobilities are causing a lack of sleep in our house. She can now sit up and lay down all by herself whenever she chooses. Her maneuvers are a little unconventional and completely unique, but they are hers and she has figured them out on her own. Although we are all thrilled at her accomplishments, we are all exhausted on this very first day of school. Ashley doesn't have to go to sleep when I lay her in her crib. She can sit up and play and cause as much trouble for as long as she would like. Like around 1:15, and 2:00, and 3:01, and again at 5:00, and then she falls fast asleep. Unfortunately, I have to bounce in and out of her room all throughout the night to check to see what she is up to and what she has managed to tear up. Lets just say that at one point she dismantled an entire box of wipes that I had failed to remove from her crib in the middle of the night. She was decorating or celebrating with them by stringing them as if they were streamers. I kid you not when I say that all 250 wipes were beautifully hung around the nursery as she threw them out of her crib. There were rows of them still connected hung from end to end of the crib and there she sat in the very middle applauding the work she had done. The next item she grabbed a hold of was her sock baskets that so neatly hand on the outside of her crib on two little hooks. To add to her party she tore apart each pair and distributed them around the room as well. My sweet Allie is so very tired this morning. She eventually came and asked if she could sleep on the couch around 2am and I tucked her in the best I could. She still didn't rest much because of all the commotion of me running through the living room every couple of hours. For paybacks we all got to wake her up bright and early this morning(7:30a) to drive the kids to school. At first she was fussy until she realized we were going "bye, bye" and then her sleepy little eyes twinkled and her smile could not be erased.

Now that we are back home I was hoping for a few moments to rest, but she is sad about Blake and Allie being gone. She is sitting in the family room crying and reaching for the door to go "bye, bye". Honestly, she thinks she can convince me to get her right back out in this rain to go pick them up. Not in a few hours, but NOW.

She is supposed to have a public appearance with her dad during his lunch hour, but the rain makes me nervous. I hate to get her out and expose her to so much in this kind of weather. They are the guest speakers at the Ambucs Too meeting here in town this afternoon. I have no idea how Dave is going to pull this off(I have to pick up Blake and Allie during that time). He is going to be on his own, attempting to speak, while holding(he thinks) Ashley Kate. I'm giggling to myself right now at the thought of it. I hope the attendees are understandable when she starts to wiggle away from him. Its a little late to reschedule so I suppose they will go and make the best of it. My only instruction to him is that no matter what she does he has to make sure her hair bow stays in place(you know its the important things that matter to a mom). I don't want her first public appearance to be made with her looking out of sorts.

She has now taken the bag of formula out of her feeding pump and is shaking it trying to get the lid to come off. Its going to be one of "those" days after having one of "those" nights. I LOVE this life! I really and truly do. I think its wonderful that she is here and able to cause all the trouble her little 3 year old self can muster. I just have to giggle(as I yawn) at this child who can do all of this and still not walk. What will we do once she can?

The last update on Kylie told that her fever had climbed above 104 last night and that they were suspicious of a line infection. I hope this morning brings better news. Your prayers are being greatly appreciated. We just want her to recover, begin feedings, and come home. That is our prayer.

Hope you all have a wonderful day. I just love listening to the rain! Its the getting out in it that I don't really love. Take care my friends. Trish

Her and I

Tonight its just me and Ash. Its kind of like a trial run of sorts. Blake's been gone to a back to school retreat since first thing this morning and Dave and Al are at the meet the teacher event at the school. Classes start on Wednesday morning so Ash and I are practicing tonight. Let me tell you its REALLY quiet. TOO quiet for us. We've eaten dinner(she's eaten over 300 calories a day for the last 3. YEAH!) Put on our jammies. Played puzzles. Scooted around the floor. Watched a couple of Blue's episodes. Read a Dr. Suess or two and now we are...? Really bored. When are they coming home? I have no idea how we are going to do this every day for 8 hours a day for the next 9 MONTHS! We've been home now for 5 months and we have loved every single minute of it. Of course we especially loved the days of summer when the house was buzzing with the kids and their friends, but now its going to be up to the two of us to keep ourselves entertained.

This week officially began our busy season. Our family is going to be running here and there and everywhere each and every day. Although I hate having the kids gone for so many hours a day, I love the time of year when their activities get back into full swing.

Ash is on the verge of a major breakthrough. She is half-way crawling around the family room floor. I turn around for just a moment and find her in a completely different place than where I had left her. Its about the most exciting thing we have ever seen(and we have seen some really exciting things!) She has learned how to crawl with her hands but hasn't quite figured out how to move her legs along with them. Last week Dave and Ms. Sue worked on her cross crawl patterns and the top half just clicked with her. I'm hoping that after this weeks therapy the bottom half with click along with the top. I just can't wait until I have to chase this child!

The door just opened and the silence is over. Yeah us! Not its time to go catch up with the kids and get all the details. By the way, Dave scooped Ash up out of her crib(again)and now they are hanging out in our bed. Just a little FYI.

Good night. Trish

Prayers for Kylie and Joan

Kylie has taken a turn for the worse. Her tummy is hard and distended and her skin is pale. Things went yucky last night as Joan was in the ER. They took an x-ray last night and I believe they are taking her for a CT scan of her abdomen today. The doctors are rounding and will be looking at her shortly. Its such a bumpy road. Please pray for Kylie, please pray for my friend Joan who must be very frightened and concerned. I wish there was something more I could do, but if you would please leave a message for them on their journal letting them know you are praying for a quick recovery for her then I KNOW it would mean so very much to them. Her website is www.caringbridge.org/visit/kyliewalleser. Just click on guest book to leave her a message. Thank you guys. Trish

Update

Kylie is doing well. Her mom shared on her journal that she had moments of not feeling well and being in pain, but has also has some moments where she was in good spirits. The original plan was to leave the stoma opened and allow it to heal from the inside out, but some how she was closed up instead. The only reason they like to leave it open is so that there is less risk of infection while healing and also in case the bowel has a blockage.

My friend Joan also shared that she is not feeling well herself and I'm not sure what is up, but she is going to the ER to try and figure it out. I know she has had some gall bladder issues this year, but I am not sure if this is what is going on. Your prayers for both of them would be greatly appreciated.

For all of you who have inquired about Kylie I say thank you from the bottom of my heart. Your prayers for her mean so very much. Thank you for caring about our Ashley and her tiny friends.

My hope is that Kylie's recovery is very quick and that she is up and running the halls in a day or two. Have a great day. Trish

Different At Our House

Things are still different at our house. I'm not sure if I'll ever get used to sitting here on my couch on a Sunday morning as opposed to sitting on the pew in our church. Not because I believe that you have to be in church to have a relationship with the Lord, but because I think thats where you have to be to maintain a relationship with you church family. Things are just different.

Our struggle with going? Ashley Kate's health and level of abilities. What do we do? Nursery? Not appealing to me. I know without a doubt if she is placed in a nursery with other children she will get sick. Every little germ that strong immune systems fight off will jump onto her weaker one. We have been more than blessed with her when it comes to virus' and the like. I truly believe it is because she has very little exposure to groups of people and especially to groups of children. Nursery life is fun for children, but it is also a breeding ground for illness. On top of the whole ostomy issue and mic-key button issue. Honestly, it frightens us and makes us feel so guilty(and we are used to it and know how to remedy it) on the occasions when her button or feeding tube gets pulled out. I can't imagine how a nursery worker would feel seeing her scream in pain while stomach content flows from a hole in her gut. Not something I want to place on anyone else. Dave's dad accidentally pulled it out last weekend and I thought he was going to pass out. He felt horrible. It just happens. Then we have the whole ability/disability issue. Which nursery do you place her in? She doesn't creep, crawl, talk, or walk like the other 3 year olds. They would run over her! Then again she is a giant compared to the other babies in the nursery. Not quite a newborn at 3 years old and 28lbs. She just doesn't fit anywhere.

I think the best solution would be a cry room of some sort. Do they still have those in churches? I remember when I was younger our church had a room in the balcony that was sound proof for nursing mothers and their infants. They could see and hear the service, but yet they did not disrupt others when the babies cried or needed to be fed. I think that would be perfect for us. Dave or I or both(since worshiping together is what we want to do) could sit and tend to our noisy toddler(who is plenty noisy even though she doesn't toddle) and not have to worry about her being a distraction. Too bad our church doesn't have one, and I don't think it would be appropriate to ask for one to be built on our account.

So that leaves us sitting home on Sunday mornings, trying to adjust to our new normal, and wondering how we can remedy this hole that we feel in our lives. For now thats what we do. I just don't think placing Ash at risk is acceptable in order for us to stay in touch with our church family. I firmly believe that our relationship with Christ is stable even though we are not worshiping with other believers. Its not about that. Its about trusting Him, believing in Him, and repentance. I'm just saying things are different at our house and for now its still a little weird.

Big, as BIG as you possibly can

I've had a full circle moment this weekend. A realization of a dream come true. A dream so big I was almost afraid to dream because of not knowing if it were ever possible for it to come true. Tonight as she sleeps in her crib I am reminded why it is that I encourage our children to dream as big as they possibly can. It can happen. He is listening to those dreams. He cares. Enough to allow some of the biggest of them to come true.

Ashley Kate lay sleeping in that "closet" that I just felt would one day become a "nursery". She lay sleeping underneath the very item that brought my full circle moment to mind. As I folded and organized her blankets I ran across it. Its a quilt. A quilt that was purchased years before I knew of her. She was only a dream the day I bought it. My Allie was toddling around my legs as I chose it. Much to big to be cuddle underneath it. "A iiiicream" she said as she pointed. "My baby" she said as she touched the quilted face of the baby doll. "The raining" she called the rainbow, and on and on she chatted about the images on the quilt we were purchasing. For years that quilt lay folded in her drawers. Every once in a while I would help her wrap her babies up in it and I would smile at the sight of it.

"Why did you buy that?" Dave wondered. "Just because" I answered, never telling him it is was a piece of the dream we had been dreaming. I knew he was confused, but it was tangible. Something I could touch. Something I could feel. Something I could invision her sleeping under. I don't know if it makes any sense to you. It sure didn't make sense to him. At the time I'm not sure it really made sense to me, but it brought me comfort and hope. On the days when I thought the dream would never become a reality. In the moments I wondered if He even knew my hearts desire. The nights I would wake in a panic as I dreamed of rocking and holding our baby, but yet her face I could never see.

Tonight my heart is blessed as I am reminded of His love for me and how much He must care about the desires of my heart.

My dream lay sleeping underneath that quilt at this very moment. She is real. Tangible. Tiny and soft. Sweet. Beautiful. Amazing. Proof that dreams, the biggest you can possibly dream, do come true.

Two Peas In a Pod

That's what they are. Dave and Ashley Kate. They share a special relationship. It makes my heart smile.

Last night we "banished" her crib back to her nursery(since she no longer has a central line for us to keep a close eye on). I thought I had tucked her in for the night only to find that when I turned around he had scooped her back up and tossed her into the middle or our bed.

"What are you doing?" I asked.

"She's not ready for bed yet. We still want to play." He answered with a smile that I still can't resist.

The two of them wrestled and giggled and played as I watched and listened. He doesn't stand a chance with this child. She has him so smitten. When it was time to really put her in bed her little heart was broken. Her cry came across the monitor and his heart was breaking too.

I'll give you two guesses as to what he did. No, he didn't bring her back to our bed, but yes he DID turn on Blue to make this child happy.

"Just to make her first night a little easier." He smiled and snuggled into bed.

So there we lay in our room, Ashley Kate in her room, and Blue Clues still being heard as we drifted off to sleep.

When I got up to check on her I found her big sister sleeping on the floor in front of the crib. Happy to have her back where she belongs.

What are we going to do about this child? She's gotten us all right where she wants us, and not one of us seems to mind.

Life is surely blessed.

Kylie Update

Kylie didn't go into surgery until around 1:30 due to a transplant that took priority. Her mom updated around 2:30 and that is the last I know. I am assuming she is still in surgery or possibly just getting into recovery at this time. I plan on calling to visit with her mom this evening. I will give you the update as I receive them. Thank you so much for praying for our tiny friend.

What is the "take down" procedure?

I'll explain it the best I know how with the information I've been given. To be honest it remains a little bit of a mystery until you are actually there going through it. It is not something that is explained in detail to you when you go through the transplant. I assume that is because it is so far out and there are so many other issues they must take care of post transplant. Dave and I asked our surgeon to explain it when Ash was last in Omaha and this is all the information we were given. Here goes.

When your child comes out of the operating room from transplant they have what is referred to as a "stoma". This "stoma" is a whole in the wall of the abdomen where a loop of the transplanted bowel is pulled through and is now external. This loop of bowel has a hole in the proximal(the upper end that leads toward the stomach) and the distal(the leading to the lower end towards the large intestine or colon). When Ashley was very, very sick last fall I posted pictures of her swollen body(probably around late Sept. to October? you are welcome to look back to see what her stoma is). The loop of bowel is left out so that scoping and biopsy are easier on the patient. Instead of having to enter the bowel from the rectum they are able to use the proximal and distal holes in the stoma to retrieve these biopsies. Anyway, Ashley doesn't stool in her diaper because of this stoma. The stool(usually) exits through the proximal end of her stoma into her ostomy bag. It is actually called an ileostomy because it is a loop of the ileum portion of the bowel that is pulled through the stoma.

The "take down" is the surgery(major surgery, there is nothing minor about this operation. I'll explain in a moment) where the surgeon actually cuts out this loop of bowel from the transplanted bowel and reattaches the two ends that are left allowing the stoma to be closed(eventually. I believe they leave the hole open and pack it for it to heal from the inside out lowering the risk of infection). Once the take down is performed the patient no longer requires an ostomy bag. It takes a little while(anywhere from days to weeks) for the patient to begin feeds again. The bowel is a touchy organ and it must recover from the "injury" before you slowly introduce feeds again. They start your child on TPN and the whole advance feeds dance begins again. As tolerated the patient's feeds slowly advance 5ccs at at time until full feedings are reached.

The danger of this operation is in operating on the bowel itself. The bowel is full of stool which is full of bacteria. If at any point in the surgery that bacteria gets into the blood stream you have trouble. Sepsis. Systemic infection which is very, very dangerous. In addition to infection the bowel can have strictures or blockages that cause major issues. It is also possible to have a perforation(an whole) in the bowel that once again would cause leaking of the stool and bacteria into the patients system.

In all honesty, I have known patients who have recovered quickly(2 weeks), some who have spent (8wks) recovering and returned home with no problem. I have also known patients who have died from complications of their take down procedure. After the bowel is reconnected it presents a whole new set of issues for the patient. Loose stool, severe diarrhea, rash and skin breakdown that you can't even imagine(worse than any diaper rash you have EVER seen). Potty training our children will be a nightmare. The transplanted bowel is fragile and picky. You quickly learn what foods and what types of foods can be tolerated better than others. The take down is a hurdle in the transplant race. We all know that some people clear hurdles in a race much quicker, easier, and smoother than others. My prayer for Kylie and eventually Ashley Kate(when I get brave enough to have hers done) is that they come through this race without even a scratch from the hurdle.

The earliest a take down procedure will be scheduled is 1year post transplant(Ash rejected her small bowel exactly 5 days before her 1 year anniversary so take down was ruled out for her at that time). They do not do take downs during the winter months when virus and flu run rampant in the hospitals. There is no need to expose them and their fragile immune systems. Usually the surgeries are done between April and October. Other patients choose not to have theirs done for years. Ashley Kate is approaching her 2 year anniversary in late September and we are considering a possible take down for her late next spring before Blake and Allie get out of school.

I will be the first to tell you that the whole issue TERRIFIES me. Ashley has never done anything the easy way. The thought of being hospitalized indefinitely does not appeal to us. We love being home with Ash. She loves not being poked and hurt daily. She is happy and content and beside the whole being 3 and not wanting the ostomy bag left on her issue the stoma doesn't really bother her that much. She occasionally has a really bad skin break down from the acidity in her stool and that can be painful for her.

Now then, I said they usually don't stool from their rectums when they have an ileostomy. Well, recently Ashley somehow has figured out how. The first time I saw it happen was in May when I went to change her diaper in the doctor's office. SURPRISE! I was shocked. Speechless(until I had to ask the nurse for some wipes because I had never had a need to travel with any in her bag until then). She currently stools in her diaper approximately 3-5 times a week and it still shocks me every time. I have no idea how she pulls this off! Anyway, that's my Ashley. She writes her own book and does things her own way.

I know there are parts to the whole take down surgery that we don't know about yet, but this is what we do know so far. Hope this helps explain it a little.



P.S. Cathy,if you read this could you please e-mail me your shipping address. I have a gift for Annabel that I would love to send you. My e-mail is ashleysorgans@yahoo.com. Thanks

Prayer Request

So many things are going on and I really want to blog, but the most important thing I could do tonight is ask you all to please pray for our dear friend Kylie. She is in Omaha tonight awaiting her take down procedure in the morning. She is scheduled for surgery at 7:30a.m.. I know her mom would covet your prayers It is a frightening reality that all of us who have been forced to chose bowel transplants for our children must go through. It should be a 2and 1/2 hour surgery. Please, please pray for our friend. I will update as soon as I hear anything tomorrow.

Thank you for praying for our Ashley and for her friends. It means so very much to my heart. Goodnight. Trish

Old McDonald Had a Farm...

eee i eee i oh!

Guess who ate an egg for breakfast this morning?

That's right. I said an egg! She ate "real people" food without gagging.

We are THRILLED!!!

Something must be...

...seriously wrong with me. Why am I NOT sleeping? Both of the girls have stepped out the back door to Nan's for the night so that Dave and I might have a full nights sleep without listening to Blue(yes, we are still having the whole issue with her favorite puppy). What am I doing awake? I should be fast asleep, but here I am wide awake wondering if the girls are asleep yet?

Ash has been hanging out until the wee hours of the morning just for the fun of it lately and we are pretty tired. Now that her central line is gone I allow myself to half way close my eyes while she is in her crib, but we still have her ostomy. Trust me, an ostomy bag and a 3 year old don't get along any better than an ostomy bag and a 2 year old. She pulls the bag off at least once a day. I find myself changing that silly bag up to 3 times a day. Insurance has approved her for 40 bags a month and you would think that would be more than enough. Yeah right! Not for Ash. While we were in Oklahoma for her birthday we quickly went through the supplies I had packed for the 2 day trip and we had to call around and try to order some. The bags were $85 and the adhesive rings were $56! YIKES!!! Her little habit of pulling those bags off is not cheap! I get so tempted to have her take down scheduled, but I am not afraid to tell you that the whole thing terrifies me. I love having her home and choosing to schedule surgery and go back to Omaha for an indefinite amount of time is not appealing to me. Ash likes to do everything the hard way and I just don't trust her to breeze through her take down. So in the mean time I clean up her mess(you have no idea what a mess I'm talking about unless you are familiar with ostomy bags and their content. I have decided not to make you sick by sharing all the details. Just imagine). I wonder if 4 year olds get along with their ostomy bags any better? Just kidding. We plan on talking about take down next spring long before she is 4.

I'm starting to yawn. Who knew rambling on and on could make me tired? I wonder if it would frighten my mom and the girls if went out and knocked on the door? Its probably not a good idea. Guess I'll go snuggle up next to Dave and watch him sleep for awhile. Good night. Trish

Going No where

(I'll explain this photo a little later in the post)


Its a "going no where" kind of day for us, and I couldn't be happier about it. Nothing on the schedule(although I NEED to buy school supplies for the children)so were just going to clean some bathrooms,do some laundry, maybe a little organizing(I'm serious when I say that Ashley's equipment is taking over this house!) and work on crawling. Tomorrow we will hit the ground running as we attend birthday parties, Tae Kwon Do, soccer practice, Walmart, Dillards, and Target. I'm tired just thinking about it. Dave called to let me know we won't be seeing him until late this evening so that gives me the go ahead to pull up a ponytail and get busy.

Blake(and all his friends) are absolutely exhausted! I saw him get up this morning, walk around the family room a time or two and then collapse back into his bed. I just giggled to myself. Playing for 48 hours straight without sitting down even once is hard work and by the end of yesterday those boys were all begging their moms to pick them up so they could take a nap. We had a wonderful time hosting the camp out and I think the boys really enjoyed themselves. We all agree we won't be doing another one until late October when the weather decides to be a little more agreeable to tent sleeping.

Ashley Kate has systematically destroyed the family room this morning. I had placed her in the middle of her play mats with a few puzzles, a couple of toys and some books after her breakfast. I dare say a tornado has hit and you can't walk through the room without stepping on a puzzle piece! She has been so ornery and difficult this morning. She has bit my toes(while I'm trying to type) and giggled hysterically as I yelled "ouch", stolen Blake's glasses and refuses to give them back, dumped over her cup of water, and now sits in the middle of this mess being as cute as ever and scans for her next victim. The nice little play mat area has been disassembled and thrown from corner to corner. What will she do next? The possbilities are endless. Picking up the mess is a waste of time, so I stand behind her folding laundry and loving every bit of it. I shake my head and my heart is grateful that she is so much trouble. Heaven help us the day she really decides to get up and move(the child does all of this while sitting!). Nothing in this house will be safe! I can hardly wait.

The dryer is now buzzing and the kids are too(they think they need lunch or something like that)so I suppose my break is over for now. Perhaps during her nap(I've just banished her to the nursery to rest?) I'll be brave enough to clean up behind her and hope she won't notice that her puzzles are stacked so orderly and her toys have been cleaned up once she returns. If she does notice it won't take but a few moments for her to get it back to the way she likes it. Hope you all have a nice day. I'm off to switch the laundry. Trish

P.S.

Em, we LOVED the shirts you sent. I laughed out loud and promised myself that I WILL for sure take pictures of her in the "no pictures please" outfit. We miss you and hope you guys are doing great. Take care.

Many of you asked what photographer we use for Ashley's portraits. I've never had a real photographer take her picture. Dave and I took Ash's 3rd birthday portraits ourselves. We used the same area out at the pond as we did last year. I love that place! I wanted to do something different, but its my favorite place to take photos so I used it again. Her dress was made by an elderly lady who sells vintage pillowcases and table cloths in Canton. It is what they call a "pillowcase" dress. Hope this helps. I'm so glad you liked them.

Now that I'm 3, It's time for Tea

Coming to an End

I guess its true that all good things must eventually come to an end, but in this home we are not too happy about it.

Summer is almost over for our kids and their mom and their littlest sibling are already pouting about it. Honestly, our kids handle the beginning of a new school year much better than I do. I know how exciting it is to get back to school, to see friends, to figure your way around to your classes, get a new locker, etc., etc., but it leaves our house SO quiet and So empty. What in the world will Ashley Kate and I do without the entertainment that Blake and Al provide for our days? I suppose we will count the hours to carpool and be the first in line each day so that we can see them just as soon as possible(I have a horrible habit of needing to be in carpool first. I've been known to wait there for 45 minutes before the bell even thinks of ringing! I know its crazy.).

With the end of summertime and the beginning of the school year our schedules are busy and full and life is just plain crazy, but we LOVE it when it gets like this. Tonight we are hosting a camp out for all of Blake's baseball friends( to quote one of our patients "I ain't scared" of a little rain. It seems to pouring down outside our windows this morning). The boys love the pond and the freedom they enjoy when they are out there under the trees in their tents. They fish all night long(literally) and wake with the sunrise. They don't shower(for some reason they try to convince me that the chlorine in the pool will fix whatever I think needs to be washed). They lose their shirts and run around in nothing but swim trunks and flip flops. They eat their own creations that they throw over an open fire pit and end the day with the messiest smore mess you have ever seen. It's great! I sit back and watch, sneak in a few photos, and enjoy the moment realizing that they will all be 13 by the years end and the days of sweaty, smelly, 12 year old baseball playing boys will be ending sooner than we would like.

Allie has other plans. A birthday party of a good friend and an all night adventure of her own. She is so excited. Her ear ache is gone and now all that remains is a little cough. She never got a fever and hasn't let the runny nose and cough slow her down. She is excited about buying school supplies next week and about being in the fifth grade. She earned to new stripes on her belt last night at Tae Kwon Do and she hasn't stopped smiling since. I have a feeling she is going to be really good at this.

Blake is playing ball for the Tarheels( of course) and also playing soccer for the CHS Sentinels. Allie is waiting to find out what soccer team she will be playing for this fall as well as continuing her Tae Kwon Do. Ashley is... well...lets just say we have some pretty big therapy plans for her this fall. She has no idea what we have in store, but it involves hoping to get her on those horses we tried for last year. She and I will spend our days practicing puzzles, flash cards, standing, gait training, and crawling. She's gonna wish it were summer time again.

Oh,well I suppose I should get the day started. We have lots to pack up for the boys camp out and lots of extras to get accomplished too. All of the back packs will be mailed out this afternoon so you should be seeing them show up at your houses in the early part of next week. If you would like to order your own here is the information :

Cutie Patuteez
Bettie Countrymen and Connie Bowden
903-962-4826

Their website is:www.cutiepatuteez.com (I haven't looked at it myself)

As for the cost of Ashley Kate's birthday party I'm not comfortable posting what we spent because if I have learned anything in my whole blogging experience its that someone, some where will not approve and they will be quick to attack and I'm just not interested in hearing their opinions of my parenting choices. I will be happy to discuss it with you privately through my e-mail if you are needing help budgeting the party for yourself. I will say that most of our materials were things we already had around the shop and I know that cut our costs tremendously. I know our biggest expense was the candy bar and the cake and ice cream. Anyway, just send me an e-mail at ashleysorgans@yahoo.com and I'll get back with you.

Hope you guys have a great day and a great weekend. Trish

Details

The theme of Ashley's birthday party was obviously Candy Land. Our goal was to transform the room into a life sized version of the toddler game. Dave and I were really pleased with the way things turned out and at how much fun our guests had at the party. Ashley was mesmerized by the bright colors and activity and she really had a good time. I'm going to attempt to share with you each of the individual areas of our room and give you a few details about each one. If you still have questions about how we made some of our props or how we played the game please feel free to e-mail me and I will try and help you. It took us two 3 day weekends to build and paint all of our props. We laughed a lot during those two weekends and I wouldn't trade those memories for anything. It was a family project that we all enjoyed. It took us about 6 hours for set up and another 3 the next day to inflate and tie all 60 of those giant balloons. The party lasted for a little over 3 hours.

This is a photo from above of the layout of part of the game board. We took large foam squares(bought at Hobby Lobby) and cut them in half making them the perfect size for the game board. On six pink squares we painted the picture cards from the game board like a candy cane, lollipop, gingerbread man, peanut, etc. and on 3 we painted large black dots for the licorice spaces. We laid the floor out in a winding pattern that took our guests all throughout candy land. The path eventually led them to the candy castle. Along the path we placed 60, individual, 17" balloons, tied to fishing line and anchored with clear treat bags filled with 1" gum balls. The balloons really gave the room a 3 dimensional feel and it helped to transform you into the world of Candy Land. I used the game cards from Ashley Kate's candy land game to play the game and I drew the cards for each guests as they made their way along the path.




The Peppermint Forest was our first stop along the path in candy land. Ashley Kate LOVED Mr. Mint. I'm not sure if it was his size or his bright color, but she definitely had a crush on this character. The snow in the Peppermint Forest was sprinkled with peppermints. When you arrived on the Candy Cane square you were invited to choose a peppermint from the snow piles. Each peppermint was marked with a 1,2, P, or C. You could win a prize with a P, a giant sized box of candy with a C, or advance along the path with a 1 or a 2.



Lollipop Woods. One of my favorite areas in candy land! I love princess Lolli. She is so adorable. The giant lollipops were some of my favorite decorations. This is where Ashley Kate sat to open her gifts. The lollipops were something I definitely wanted, but purchasing them was proving to be quite expensive so we decided to make our own. We looked at Styrofoam, but the price was still really high($9.99 per disc!) so Blake asked me why I didn't use paper plates. Hum? Good idea. They worked perfectly! Be sure and use a heavy duty plate like Chinet so that they keep their form well. The grass bases made the look complete. Dave and his dad built them out of scraps from the shop and our moms painted them. We drilled a hole in them for the sticks(dowel rods from Walmart) and they stood up on their own. The whole area was so cute. If you look on the far left side of the photo behind Lolli you can kind of see our lollipop pull. We took a piece of peg board and cut it into a round shape, painted it yellow, added a large dowel rod and a base and then stuck lollipops through each hole. The guest that landed on the lollipop space pulled a lollipop and went forward or backward 1 or 2 spaces according to the color and number of rings we had painted on that stick.



Here is a closer view of the lollipops.






This is Jolly and his gumdrop mountains. The inside the mountains hid a jar of gumdrops. Each of the guests took a guess as to how many gumdrops were inside of the jar. The jar held 447 gumdrops and my brother won the jar much to the delight of his one year old who was caught quite frequently sneaking into the jar and filling her cheeks with yummy gumdrops. Jolly was created by Allie without any help from the rest of us. She did a really good job.




Queen Frostine and Snow Flake Lake. This is where the children went if they drew the ice cream cone card. A trip to Snow Flake Lake gave them an opportunity to play ring toss. We had five "poles" sticking through the "ice" and three glittery rings for them to throw. If they hooked one of them they were then awarded a pink, fluffy bag of cotton candy. The cotton candy lined the edge of the lake and by the end of the game all 16 of the children won a bag. It was so yummy!



Lord Licorice. The only villain in candy land. He stood in the middle of the game board ringing his hands and smiling at each of the children. He scattered three large black dots(sticky licorice spots) throughout the candy land path and if the children landed on one of them they lost their next turn. Needless to say he was not their favorite character.


Here's a photo of two unlucky players who got "stuck".




So here we have gloppy the chocolate monster. He was so cute! He sat in the chocolate swamp where giant chocolates floated(card board boxes painted to look like chocolates) and fudge sicle's grew(I love these!). His bottom lip was covered in chocolate telling all over himself that he had been enjoying a little of the swamp. Blake and David worked together to create this character. He looked adorable!




Here is gramma nut. I think she looks fabulous! She is in charge of caring for peanut acres. She was painted by Ashley's grandma who agreed to paint her as long as she didn't have to be her at the party. We promised no one would be allowed to call her that. She did an amazing job bringing her to life. Everyone loved gramma nut.




This is peanut acres. It basically consisted of 3 peanut bushes, gramma nut, and the pathway sign. In peanut acres you had the opportunity to win giant pixie sticks. The kids loved this part. There were a couple of brown paper sacks filled with real peanuts(still in the shells). The object was to toss a peanut through one of the holes in the bushes. If you made it you won the pixie stick. The bushes were decorated by gluing real peanuts to them making them look like they were really growing on the bushes.





This was King Kandy. He was Dave's project and he turned out better than any of our other characters. The detail in this piece is amazing. He stood and welcomed all of the guests into the candy castle. The kids were all thrilled to finally make it here and have their photo taken with him.


This was our Candy Castle. It was basically a 10x20ft. tent without the sides. I hand painted the back drop from an image off of the Hasbro website. There was also a hand painted "welcome" banner with Kind Kandy that hung on the front(I failed to get a good picture of it). There were also two candy striped panels that hung on the front framing the entrance to our castle. Inside the castle is where we set up our candy bar. The front 2 tables held candy jars(I bought at Target in three different sizes) that contained candies we chose to represent all of the charaters from the game(ex. soft peppermints for Mr. Mint, giant gumdrops for Jolly, etc.) as well as a few other favorites. The last candy jar held toothbrushes for all to add to their goody bags. The last table in the tent was our cake table. The table cloth on it was my favorite piece of the whole party(and I didn't even take a picture of it!). It was a hand painted copy of the game board and characters. You can kind of see it in some of the cake photographs.




The candy garlands were a really cute addition. We made them out of colored cellophane, styrofoam discs(from the dollar tree), glittered snow flakes(from Hobby Lobby) and fishing line. I love the way they turned out.

The candy castle was set up at the end of the room at the end of the path. The goal of the game was to make it to the end of the path to King Kandy's Castle. Once inside of it you had the opportunity to fill your treat bag with items from the candy bar. It was a huge success.



Here is a closer look at the inside of the castle and the candy bar. The striped table cloths are vinyl and I picked them up at a Dollar General.



Our guests tables were covered in pink, lime green and yellow table cloths. The center pieces were miniature versions of our life sized lollipops from Lollipop woods. I used foam circles in pink, purple, blue, orange, and yellow and clear cellophane to make them. Each place setting had an ice cream dish and spoon along with a freshly made cotton candy. We served peppermint ice cream along with the cake. Each layer of her cake was different flavor. Chocolate, strawberry, and white. We also had a smash cake(a small cake for Ashley to tear up), and a "kitchen" cake. This is the cake we served to our guests so that we could bring her actual birthday cake home for her birthday on Monday. My sister always bakes a smash cake for toddler and baby birthday's for photo opportunities and for large parties she makes a kitchen cake that is just as yummy as the actual birthday cake only it has been decorated. They all taste AMAZING!

I forgot to take photos of our tables and centerpieces but you can kind of get an idea from this photo.

It was really easy to make all of this happen. I know it seems like a lot of work, but it was enjoyable work. Knowing we were being given the opportunity to celebrate 3 years of Ashley Kate's life made is SO worth it. Late Monday evening as we tucked Ash to bed Dave reminded me that the Lord has allowed Ashley to be home and out of the hospital for all three of her birthdays. What a blessing!

I hope this post helps you with any of the details you were wanting to hear. I tried to mention everything I could think of. If you weren't interested then I apologize for such a long and boring post. Hope your all enjoying your day. Take care. Trish

Two Down

Ugh! Both of our girls are down sick with some kind of allergy drama. The nights with Ash are looooooong around here. I had hoped that Ash would not pick up anything, but unfortunately she has. She woke up Monday morning sneezing. A lot. I watched her through the day and wondered what in the world could make her sneeze that many times. Then came the runny nose. It never stopped. Last night the ear ache hit. This morning her little throat is dry and her cry is hoarse. Yikes! She and Allie sound just alike. Allison had been sick her entire visit to Oklahoma. We really think it was probably an allergy or something in the air from the change in environements. It began the evening after she got there. Ear aches, stuffy nose, runny nose, cough. Last night she continued to complain about her ear during Tae Kwon Do. She has been so careful not to touch Ash, not to breathe on her, not pick her up or cough around her. I'm so thankful Chiropractic does amazing things with ear infections. If it didn't I don't know what we would do!

The good news is that it isn't really slowing them down during the day. Their noses are runny and they cough but they still play. They have no fevers and now that Ash doesn't have a central line I think the worry is a little less than it would have been about infection. One of her incisions is a little red and irritated mainly because she is trying to remove the stitches with her own fingers, but other than that I think she is healing nicely. She did manage to remove the bandages over the incisions just 2 days after her procedure. (That's why she had band aids showing in all of her birthday pictures. I thought band aids looked better than stitches.)

Ash has PT today. I'm not too sure how well she will do since she isn't feeling that great, but were gonna give it a try.

I'm still working on the details post about her party. It's taking much longer than I had expected.

I picked up all of the back packs and they turned out sooo cute! The choices were a little limited so I did the best I could. I did get the information and name of the vendor so that you can order them yourselves if you would like. I will post it for you later on today. I plan on getting them all in the mail over the next day or two. Things have been a little crazy since the girls have been sick. I have not deposited any of your checks yet. I will be doing that early next week(just in case you were wondering why they hadn't cleared yet).

I know this was a random post, but without much sleep I'm afraid my mind is working in random mode. Hope you guys have a great day. Trish

Details are coming

Whew! It has taken hours and hours to sift through the 389 photographs that were taken over the weekend. I tried to give a brief over view of all the different components of her birthday celebration. I promise the details of the sets and the games that we played along the path are on the way. I just wanted to share some photos first since I know thats what most of you were waiting on. A few of you have asked for the nitty, gritty details and that is what I will be attempting to share with you late tonight. We have planned a small family get together tonight for a private celebration of her birthday and when I return from that I will attempt to post the details of each of the characters and the planning that went it to the party for those who have asked for help with their own Candy Land celebrations. I can assure you won't be disappointed with this theme and your guest will have a wonderful time.

I'm off to clean us all up for dinner and then to enjoy some of that amazing cake. Yes, my sister does make cakes professionally(she's been creating them for us for years, but has just begun to provide them for the public over the past year). She is amazing! Her business is Creative Cakes by Toni located in Edmond, OK If your in the area I would HIGHLY recommend her(Some people drive all the way from Dallas to get one of her cakes!). She can make anything and it tastes better than any cake you have ever eaten. I promise!

We still can't believe we are celebrating three years with our pickle! I get goose bumps every time I type that! Have a great evening. Trish

Candy Land Celebration

Happy Birthday Sweet Girl!

Sweet Ashley Kate,

You woke early this morning before the rest of us. I stayed very still and listened to you play in your crib. How precious you are! Your tiny feet poked above the rails and your hands applauded the day. I listened with tears in my eyes to your voice. The voice that had been silenced for over a year. The voice that I longed to hear again. The voice that I prayed had not been lost forever. You so proudly said, "b,b,b,b,b,b,b," this morning. You giggled and played with absolutely nothing. My heart rejoiced to be in the room with you enjoying the morning of your 3rd birthday.

Three years! I can't believe it! You are still here. You are still learning. You are still growing. You are still teaching. You are still the most beautiful person I have ever known. How thankful I am to be your mommy!

At this moment you are scooting your little self all around the family room. Your tea set sits before you and a saucer is placed in your mouth. The spoons have been strewn about the floor and the cups all sit empty but you don't seem to mind. Your attention has been captivated and so has mine. Ashley Kate, I could sit here in this moment and watch you for ever never needing anything more. I can't keep the tears from stinging my eyes. Will my amazement over your life and your every breath ever cease? I hope not. I rejoice in the Lord for you today. I thank Him over and over again. I am so happy.

Ash, We celebrate your life today. Your daddy and I celebrate and delight in every single moment of your life. You are such a blessing, such a gift, such a miracle! Thank you for surviving. Thank you for fighting. Thank you for being here with us. Thank you for giving us three of the most wonderful years of our lives. You are so loved. Happy Birthday Baby Gherkin! We love you today and for always. Enjoy being 3, you have surely earned it!
Love, Mommy

Our trip to Candy Land...

...was amazing! It came together even better than I had hoped it would. We had so much fun celebrating Ashley's 3 years with our family. She LOVED everything about her party. I am working on a slide show of the party complete with details of all of the different areas of Candy Land. Hopefully it will be finished by tomorrow morning so you all may take a little trip of your own.

I just wanted to share a couple of quick photographs of two of the most amazing things that were there. Our three year old and her birthday cake(my sister's cakes are INCREDIBLE!). Lighting those three little candles in front of her twinkling eyes is a moment I will never forget. Can you believe she's 3?