Searching

Still so sweet and so beautiful

Ashley Kate's labs came back in yesterday afternoon. All things indicate some type of infection is brewing...somewhere. We just don't know where. Could be ears, throat, teeth, blood, bowel, or urine. This is so crazy!

WBC were elevated, all "cytes" mono, luko, etc. were elevated, sodium was low, potassium was high, platelets were high, BUN just slightly elevated( telling us she's getting dry but not dangerous we are somehow staying on top for now), creatnine low, and so on and so on and so on.

The consensus out of Nebraska? Repeat all labs this morning and compare, add to that blood and stool cultures to attempt to find the culprit.

Not sure if anyone other than the parent of a terminally ill or chronically ill child can really understand how difficult it is to locate peripheral veins anymore. Every parent of every child who gets sick that I have ever known has said, "he/she is a hard stick". Yes, I agree, children are a hard stick, but children whose veins have been accessed daily, weekly, monthly for their entire LIVES are really and truly a HARD STICK. Its a whole new ballgame when you add in those two words chronic and/or terminal. Add to that the fear, the knowledge, the anticipation of the stick, the searching, and the digging around in their unusually tiny limbs(from being gut transplant kids with growth challenges) makes for a miserable experience. Truly miserable for them.

Peripheral sticks for labs or IV still remain the hardest part of the journey for me as Ash's mom. Not sure if anybody gets that, but I HATE lab work and HATE IV's. I can handle packing and dressing a wound with my very own hands that literally split her tiny body in half more than I can handle watching someone stick a needle into her hands, arms, feet, etc and begin to "dig" in an attempt to get a vein to roll under the tip of the needle. I begin to pray like you've never seen the night before her labs, begging for "our girl" the one who has gotten the best at getting blood from Ash to be working the next morning. Begging for just one or two sticks rather than multiple. Begging for Ashley's body to get so tough that she doesn't even feel the sticks. I know the Father must think I'm crazy on those nights and then the next morning as she goes in. Dave takes her into the lab and I stay behind praying, pleading, and begging. Then I anxiously wait for her to return home so that I can interrogate him and her with the same questions I ask each and every time she goes in. Its a crazy cycle.

So for the second day in a row we sit and wait results. Results that will give answers and direction. I want her labs to say, "All is fine, she's good, nothings wrong". Thats what I want to be told when those papers come across the fax machine. The blessing in all of this is that she is still home and she is stable. She is surrounded by her things, in her room, and by her family. She is comfortable and not scared. If we can stay here then we can do this. Its when we pack it all up that life spins out of control.

Our prayer is for her recovery of course, but also for her to remain home. Where she is happiest. Join us, please. Take care, Trish

Peace? Can it be found?

Its so very easy to say. To talk about. To think you will have it when the time comes it is needed. Actually acquiring it, living it, breathing it, and believing it is something entirely different.

Our journey here has always been an honest one. In times we have felt an overwhelming peace that came from Him, and then there are those times when I can't seem to even find Him let alone feel the peace that can only come from him.

In word it is so easy, in walk I have found it is not.

The place I find myself in lately is an uneasy one. No rest. Only Fear. Anxious. The place I desire to be is in the middle of His grace with that overwhelming, unexplainable peace flowing over me.

My heart is so heavy. As I watch Ash slip from stability, normality, and living, to this weak, unknowing state, the heaviness in my heart is physical. I can feel the weight of the fear inside of me. I live on the verge of tears daily. Fighting them back, willing them not to fall in front of my children, my husband, my friends.

Trusting in God's plan is not always an easy thing to do. You can know in your heart that what He has in store is right and you can know He IS trustworthy, but accepting it is the hardest part for me. He knows my thoughts and so hiding them is ridiculous. I'm afraid. Afraid of what His will for my Ashley will be. I want her life to be easy, to be carefree, to be filled with joy and happiness. I am reminded today that what I want may not be what He has planned for her.

As much as I desire to be at rest and trust Him at this time, I have the memories and the experiences to remind me that my daughter's life is fragile and can be taken in a moments notice. You see, even though I trust Him I still fear Him and His power. Even though I know that if He did choose to take her from my home to His she would be ok, I still can't fathom not having her in mine. I want Ash to be well. I want our carefree days to return. I want to wake up and play all day, not watch her lie still from a lack of strength.

Its not about me though, its about HIM. Accepting that is hard when it involves the life of one of your children. It really, really is, and that's about as honest I can be.

Isiah 48

"Fear not, for I have redeemed Ashley Kate. I have summoned her by name, She is mine. When she passes through the rivers they will not sweep over her. When she walks through the fire, she will not be burned, the flames will not set her ablaze."

He loves her more than I do. I'll never really be able to understand that love because there are not words to describe HOW MUCH I LOVE HER, but I trust Him when He promises me that He does.

We are waiting on lab results to come through. She may be dehydrated again. She may require an admission for IV fluids to help her through this once again. We just don't know what all she needs at this time. I'm desperately hoping her labs don't tell us she needs to go in. I'm hoping she will perk up at any moment and show me that she is in fact fine. I'm also hoping to find peace in whatever comes. At this moment I'm just consumed with heartache and fear of the unknown. Its exhausting.

Rewind

We have rewound Ash's recovery from this virus and it looks as though it has not run its course. She is once again tiny, weak, and frail. No smiles or laughter since the middle toward the end of last week. Each day she seems weaker than the day before. We just can't kick this thing. Dave and I are concerned and on the edge of worry, but doing our best not to slip over.

The attempt at bulking her up has back fired if you ask me. She is smaller than ever. Her spine and ribs showing from behind. Picking her up is frightening. You feel every single bone and her body aches to be touched. She hasn't been able to sit up that much the past two days. She whimpers in her sleep and seems tired all the time. She doesn't have enough strength to stand and she isn't able to take any steps even when assisted.

We will be running her monthly labs in the morning(two weeks early) just so we can see if any red flags appear. Her blood sugar is normal. She's had a low grade fever for the last couple of days, but nothing even close to being high enough to ask for blood cultures. I can't for the life of me figure out what is making her feel so ill. My last thought was a possible UTI? She's never had one, doesn't really have any signs, but maybe she has one? I'm just trying to pin point the cause for the low fevers. I'm just not sure.

I can't sleep at night. My thoughts are consumed with Ashley Kate. I pray until I drift off and then wake up trying to remember the last words I prayed. I just don't know why she isn't bouncing back. Something is wrong, but we don't have any idea what it is. Our hearts are heavy for her and the loss of all her hard work over the year is breaking my heart. She was doing so amazing. I really thought she would be walking by her birthday. Now, I know she will not. I would be completely content with just having my silly baby back. The one who scoots all about the house looking for trouble. Smiling all day long and laughing so hard and so loud that I can hear her all the way across our home. That's my heart desire at this time for my sweet Ashley Kate.

Bulking Up?

We are attempting to add a little of the lost weight back on to Ashley Kate's tiny frame. She lost a total of 3 lbs last month while in the hospital and those 3lbs seem to have been making all the difference between a frail Ashley and a strong Ashley.

We have added an additional 250 calories to her formula recipe and are trying to get her to take in some calories by mouth. Its slow going, but still going.

It is my hope that once the weight comes back that she will have enough strength to begin walking with her walker once again.

Other than this little bump in her road to recovery she looks WONDERFUL. She is happy and silly and thriving. We are just a little more than a month out from her 5th birthday and she loves for us to practice singing Happy Birthday to her. It makes her smile from ear to ear. She has no conceptual idea what its all about, but she does scoot to her play room, grab her felt birthday cake from her kitchen, and hands it to me so that I will begin singing to her. It makes my heart smile all over to do this for her. She is making the association between a birthday cake and the birthday song. I just love this. I really do. I don't know if she will ever understand just how special her birthday is and how excited she should be as it approaches, but those who surround her sure do. She is a miracle and each year of survival and living is cause for celebration. I am so very thankful for her life and for her presence in mine.

Today we are busy collecting building materials for the construction of her carnival midway. Tonight we are painting more banners, and tomorrow we begin baking the most delicious sugar cookies you've ever tasted for the center pieces. Each day I have plans of what needs to be accomplished in order to have everything finished for the big day. Thankfully I have sisters and a mom who are willing to help this summer :) So while we bake and paint and construct we get to laugh and giggle and visit. Its such a blessing to get to be together.

Enjoy the rest of your day. Talk to you soon. Trish

Summer's Here

In case anyone was wondering what the weather was like in our part of Texas I thought I would share with you that IT IS HOT!!! It may not be officially summertime according to the calendar, but let me tell you IN TEXAS IT IS.

I spent about an hour outside the first day of baseball camp watching Blake and that was all my skin could handle. I am so sunburned its ridiculous and so I have limited myself to not showing up until the last 30 minutes of the day. Then I follow it up with 3 hours of soccer camp with Allie each evening. Thankfully its just the first hour that is miserable then it starts to cool down.

Its far too hot for Ash to enjoy any time outside. Since transplant she's never been able to handle the extreme temperatures. Not sure why she just starts to fade fast either in extreme hot or cold temps. So she's still spending lots of her days indoors and only leaving the house for the occasional pick up or drop off of one of her siblings. She looks good. She's happy. Not sure I could ask for much more than that. Unfortunately she is still very skinny from being so sick last month. I thinks thats why she still seems so weak. When you pick her up you feel skin and bones. Every rib is visible as well as her vertabrae up and down her back. Her arms and legs are "stickly" looking. Other than that she does look good. She is asking to stand up and to walk again. She makes it a few steps before needing to sit back down, but she's interested and thats at least a place to start. She has ridden her amtryke a couple of evenings and looked so good doing it. We have tried a few more times and she didn't make it that far. We began feeding her by mouth again this week. Taking it very slow. She's only interested in a spoon or two at a time, but again at least its a place to start. We has some blood sugar issues over the weekend which was very, very un-like her, but they seemed to have resolved this week. She's silly again, and that brings a smile to our hearts. She is signing well, running the house again and getting us all back in line the way she likes us to be. Not much you can deny her when she looks so very sweet.

I love the carefree feeling that summer brings to our home. Its just about enjoying each other's company, having friends over, and playing ball. Thats what the kids are up to every single day. I love having them around with all the chaos that follows. I'm up to my elbows in paint and party supplies. I have lists made on top of my lists. I'm trying to prioritize and then place each detail of her birthday party into categories to stay on top of it all. Its busy and crazy during the planning phases, but the execution and celebration will all be worth it.

My sister is on her way for a visit later this week. My other sister just went back home from her visit. My mom is coming to play with Ash in the RV this weekend so Dave and I can enjoy watching Blake play without worrying about Ash in the heat. All is not always right in our part of the world, but life is just too wonderful to worry about the things that aren't. We are just grateful. That's the best word I can find to describe the state that Dave and I live in. Grateful for all that God has blessed us with. Grateful for the lives of our children. Grateful for the normalcy of our days. It doesn't get much better.

Hope you all are having an enjoyable summer with your kiddos underfoot. I can't think of a better place for them to be=) Talk to you soon. Trish

Under Construction

Its 7 Saturdays away and in the meantime Ashley Kate's 5th birthday celebration is under construction. We are in the planning and materials stage. Reserving props and hiring entertainment. I'm so excited! With all the sick days she's experienced lately my heart needed something to focus on. So the amazing 5th birthday party is what I've chosen. I just can't believe our girl is almost 5 years old.

This weekend I'll begin painting banners for all the booth fronts. The garage is being converted into my workshop for the next two months. When all is said and done this party is going to be her best ever. I know she'll love it.

Ash has been staying awake for longer periods of time. Each day seems to get a little better. Its slow in coming but she's starting to move some. Yesterday morning she came out of her room on her own for the first time in weeks. This morning she took about 20 steps while holding on to my hands. Her legs are tiny and weak, but she managed to get from the hall way to the ottoman which is not quite half way across the family room. My heart was encouraged. She's lost several pounds and on our tiny girl a few pounds is a lot. Putting that weight back on her is going to take months and months. Thats if we even can. I'm not convinced we will be able too. We allowed her to ride in the car with us to pick up Blake from church last night and it was the happiest I've seen her since she became sick. She's been in the hospital or the house for almost a full month now and that's not the way Ash chooses to live. She likes being on the go, but in order for that to happen she's got to regain her strength. Its happening a little more each day. Still no therapy. Dave and I are choosing to take it slow with her. I think we allowed her to jump back into the swing of things too soon last time and we don't plan on making that mistake again. She needs time to rest and seems to be enjoying her carefree days with no schedule.

In the meantime my sister came to visit and helped me finish the redesigning of the girls rooms. Allie's desk finally arrived, some items got hung on the wall and all that is lacking in her bedroom is the hanging of the chandelier we redid for her. Ashley Kate's room and furniture has all been painted. It is so incredibly cute! No pinks or pastels left. Instead its all been replaced by a bright red, sage green, and yellow pallet. We used a red gingham and green swiss dot fabric that ties in with her bedding on her big girl bed beautifully. It is definitely a little girls room now and no longer a nursery. All I have left to complete in her room in the awning that hangs over her bistro table. I hope to have it finished by the start of next week.

Next week the kids have soccer and baseball camps. Then my other sister will arrive and begin helping me sew the sides and tops of the carnival booths. She will also start baking the dozens of sugar cookie shapes that will make up the table center pieces. Sugar cookies freeze for up to three months and come out tasting as fresh as the day you baked them(it helps to have an amazing baker and cake decorator as a sister:) We've got to get a head start on them.

Does anyone know of a local clown for hire that makes balloon animals? I'm having a hard time finding one in our area. My other option is to convince Blake and his friends to take some crash courses and dress up for his baby sister. He's not thrilled about the idea since their girl friends are invited to the party. I'm hoping not to have to resort to that, but if I have to I will.

Anyway, thats whats up around here. Our girl is home, almost 5, and happy. I'll take it. We had really hoped she'd be walking around her carnival in her walker but she might be driving her chair instead. Either way its going to be quite a celebration!

Standing by

It's what we are forced to do. We stand by on the sidelines of her life willing things to go well but having no ability to make it happen. I wish we could do more. So much more.

Ash has not bounced back. It's been almost a week and she's not the same little girl she was. Our hearts hurt over what she's lost. She is so weak. Her strength is gone. She doesn't play. She doesn't move about the house. She doesn't smile very often. She doesn't stand for more than a few seconds at a time. We tried to encourage her to take a few steps in her walker, but she just can't do it anymore. There has been no swimming, swinging, or bike riding. Just lots of resting I'm so sad to see her feeling this way.

I guess it's just going to take her a little longer than it did last time. Our hearts are heavy as we stand by and watch her struggle. It's just so sad.

Pathology

The pathology results from Ash's biopsies are back. No rejection. PRAISE GOD!!! On the cellular level you can see that damage to the wall of the bowel has occurred. Sluffing off of the villi that will take time to heal. Her bowel took a hit with some unknown, unidentified virus. We will more than likely never know what made her so very sick, but the good news is that she is healing and looking better and better each day.

The thought is that she had two different viral infections. The original one that hospitalized her for the first 5 days. She recovered and remained well for the next 4. Then became very, very sick once again from something different. She more than likely caught the second round of whatever it was due to being weak from the first.

Ash is getting stronger every day. The first night she was home was rough. She was so weak and sickly. Just absolutely worn out. I was very, very nervous and worried. The next morning was a little better and each day since has gotten better . She is not able to stand for more than a few minutes, is not taking any steps, and has little interest in going outside to ride her bike. Its just taking time to recover. She did some swinging in her play room for the first time since coming home yesterday afternoon. She wears out quickly from any activity and is sleeping long and hard each night. She's not eating anything by mouth and we plan on taking it very slow in this area. Just giving her time to regain her strength and interest in her normal activities. She has had no therapy this week and will probably not have any next week either. Hopefully we can restart her slowly the following week.

We are so grateful to be home with her. She's very cuddly and lays her head on our shoulders each time we hold her. Although we are enjoying the extra closeness it does remind us that she is still recovering. Ash had gotten far to busy and active to have any interest in being held and cuddled.

There is so much I could share about her hospitalization but it would be very time consuming. I can't thank the team at Schumpert enough for taking care of our girl. We LOVE them and we TRUST them. Even when we don't agree. They are some of the best doctors we have ever met and they worked very hard to keep us close to home. Dave and I are so very thankful to have them on our side. I'm grateful that she has proven not to need the central line that was attempted. We truly felt she didn't need it, but caved and allowed her to be taken into the OR for placement. We were very clear that we wanted them to not be aggressive. If it went easily then so be it, but if it would require any trauma, incisions, or cut downs then we did not consent. Its a very scary thing to place a line in Ashley. The surgeons don't look forward to it because she is out of easy access. Both jugular veins are no longer options. Neither are the sub-clavian veins. All occluded and scarred down. They made one attempt in a vein that they thought showed flow on ultrasound and absolutely could not get it to go in. She does have both femoral veins. A line could be placed in one of them, but we are "saving" those veins. Ashley Kate is only 4 1/2 years old and we have a lifetime of chronic illness ahead of her. We NEED those veins and are trying to protect them for as long as we can. Once you are out of access you are out of options and you find yourselves at the end. I can't imagine being there. I hope we never arrive at that place. Therefore I would not consent to a line being placed in either of those veins. My hope and my prayer was that Ash would turn a corner and start to recover which she did. While she lay in the recovery room all I could do was sit next to her bed and cry. I cried my eyes out. Not knowing if we had made the right decision or not and just begging God to bless our efforts at trying to protect her remaining veins. He did. Ash began to turn around that very day and did not need that central line. The decisions we have had to make on her behalf are excruciating. I never know if they are right or wrong at the time we are asked to make them. I would never want any of you to be placed in these situations. Its miserable. It truly is. At the end of the day its my name signed on those consent forms and the responsibility for the outcome is all mine. Sometimes it goes our way and then there are those times when it doesn't(thinking back to Jan. of 07 the day of Ashley Kate's cardiac arrest. One of the worst days of my life).

I just wanted to check in with everyone and thank you once again for your prayers. I KNOW we would not have survived this long without them. We are hoping to keep her home for many, many months with no more admissions in her future. We made it for almost a full year. So close! Have a good night. Love you guys. Trish