Aching

We are aching through this day. Abby is becoming unresponsive for longer periods of time. We took her outside for a few minutes this morning. It was sweet to have her out. She hasn't wanted to taste anything this afternoon at all.

I don't know how I thought this would go, but I'll say that generally its been awful. I don't want to do this, and every minute of every day I want to change my mind. I have to tell myself the story of what she's been through, and what she would continue to go through if we somehow were able to keep her going. I desperately want to pick her up and beg her to forgive me for not being able to fix this for her. There is nothing, and I mean nothing, on this planet worse than watching your child die.

If I only think of her, I know she'll be perfect and not in pain. I can't do that. I am completely surprised by how selfishly I love her. I want her here with me. I just want her here. There has been this abstract thought in my mind telling me she wasn't going to make it. There have been numerous tests and doctors telling me that her little body couldn't recover. I have seen her in pain, and with IVs and lines keeping her alive for a year and a half, and I still can not believe this is happening.

Can't I just scream STOP! Do over. Not this way. But it is this way, and when I trusted God with my life and hers, I trusted Him for this place I am in.  I trusted Him to have a plan greater than mine, and a place for Abby far greater than the place I am able to give her. 

As a mother, this breaks my heart.  I spent the evening with Jeff and I telling her stories of when she was born, and all the things we've done with her.  I told her about when I was carrying her and her little bottom planted itself under my ribcage and stayed there.  I spent months barely able to breathe.  Feels familiar. 

We told her of times in church, and at the beach, taking her to the mountains, and all the walks through the neighborhood.  We told her how much we love her.  And we do.  We always will.

We just put her to bed, praying for peace and angels to surround her. 

I called Pastor Keith and Nora tonight, to pray with me.  Such comfort there.  Thanks to them for being there for us, even on vacation.  There is nothing like a church family. 

There are also heavenly bodies and there are earthly bodies; but the splendor of the heavenly bodies is one kind, and the splendor of the earthly bodies is another. The sun has one kind of splendor, the moon another and the stars another; and star differs from star in splendor....

When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”  1 Corinthians 15:40-41,54 (niv)

Chosen

I read this on another blog today and thought....how true.


CHOSEN

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...

If God had told me "this soul will one day need extra care", I still would have chosen you...

If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...

If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...

If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..

If He had told me "our time spent together here on Earth could be short", I still would have chosen you...

If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you...

-~unknown

Today was a much harder day. I'm holding my girl knowing that the only thing special about my life is that she is in it. I was chosen, and how blessed am I?

Abby, the amazing

Abby is a wonder, through and through. I know I've said before how strong she is, but oh my goodness, that girl is simply amazing. The one thing we can count in with her is that she is unpredictable.

After all she's been through in the last year and a half, we all expected her to slip quietly and quickly from this world. I have been walking around with an elephant on my chest feeling like I can't breathe, and don't get me wrong, this is still sad, but she is just so Abby that I'm amazed. We are in awe.

She has somehow managed to mix her nights and days up. She's up all night, mostly unhappy because it's not daytime. She is running a fever, which is normal for this process, but she doesn't feel too bad. She also doesn't look bad. Without so much fluid swelling her up, she looks more like herself.

What is really incredible is that she wants to taste things the last few days. She was loving apple juice on the sponge. Then she wanted lemonade. Today, she had all sorts of juices, milk, and loved a grape popsicle.

After all the months of trying, begging, and bribing her to taste anything, I can't believe that now, now, she wants it. She's not getting much, and she can't swallow well, but the fact is she really wants it. At first, I felt awful because I thought she was thirsty, but she doesn't actually want to drink, she just likes the taste of things. It reminds us all so much of Abby before she got sick, that it's a very strange mix of joy and heartbreak. Somewhere in my brain, I can't help but wonder if she could actually turn around.




All the things she wants to try!

The doctor says that her body hasn't been processing fluids well in a long time and it placed a lot of stress on her organs. She is more comfortable without the fluid, and even though it's only temporary, she feels better. She feels like tasting for the first time. How weird is that? Hospice says they have never seen a child like Abby. She really is our Amazing Abby-Grace!

Jeff and I are exhausted with Abby not sleeping, but we can't help but smile at how unbelievably resilient she is.

Emily is on her second antibiotic, and her white count is still rising. She had a chest X-ray this morning. Jeff is back at the doctors with her now. She is still running high fevers. She is also still mad about not being able to go to school. I'm with her there.

I have no idea about how the rest of this week will progress, but for today, I can only be grateful, albeit completely shocked, awed, and surprised by how it's been so far. Things can and likely will change quickly, but I wanted to remember this day.

Abby sticking out her purple Popsicle tongue.

Stretched thin

Abby is hanging in there. She is still herself, although she has very little energy and ran a bit of a fever today. She answers us, which we all love and appreciate. I didn't know what to expect and no two situations are the same, so hospice couldn't tell me what to expect. We all have had time with her throughout the day today. We hold her and talk to her. She likes the little tooth sponge dipped in apple juice. She sucks on it, and it seems to make her happy. She keeps her eyes closed a lot, but she's listening to what's going on around her. I thought she was sleeping on me today when Jeff mentioned putting Emily in the shower, but she quickly opened her eyes and fussed at him. Very Abby. Overall, she seems very peaceful most of the time.

Emily is my biggest problem right now. That is a completely insane statement considering where Abby is. This time with Abby is heartbreaking, and precious, but there isn't much I can do for her other than be sure she has meds and is comfortable. We hold and love on her, I talk to her and pray with her, and then pass her so someone else can have a turn.

Emily on the other hand needs A LOT! She is very upset that she missed her first day of school. She is fussing with me all day long about going to school, but the little stinker is sick. She is running very consistent 102-103 fevers. 2 hours before Motrin is due it's back up every single time. I'm sure she is not on the right antibiotic and under any other circumstance I would have taken her back in. She's trying hard to eat and drink, but she really doesn't feel well.

Tonight for the first time we heard a few coughs and she seemed to be breathing just a little harder. Thankfully I was able to check her O2 sats when the hospice nurse was here for Abby and knew she was hanging out around 94-95, so even though she's breathing slightly more labored,I feel like she's safe for now. We elevated the head of her bed, and continue to treat symptoms.

I would love to say what a wonderful faith lesson I'm learning, but so far, no. I am exhausted in every way possible. Emotionally, physically, and mentally exhausted. Emily being sick now has added another massive layer. I have to try to make plans for this to go lots of different ways. Hopefully a different antibiotic will turn everything around, but who knows? So far, I've been here and able to spend time with Abby, and I just don't want anything to change that. At the same time, I want to be sure Emily is taken care of. I know grandparents or Jeff could step in with either girl, but I definitely don't want to leave Abby, and I to be absolutely need to be sure that Emily is safe right now.

The pediatrician is coming over tomorrow morning, so hopefully she can help us out. Now, I'm going to get some sleep (I hope). Thanks for all the thoughts and prayers. Even with all that's going on, we can feel them!


- Posted using BlogPress from my iPad

Good news

Emily came home at 5am. Her ct showed left lobe pneumonia.

They let her come home, but we just have to watch her very closely. She was also dehydrated, so she got lots of fluids.

Overall, the best news possible for what we were all thinking. Still, weird symptoms for pneumonia. She has not coughed, not even once. No one heard anything in her chest, but that may have been because she was dry.

Who knows? Just so thankful to be home!


- Posted using BlogPress from my iPad

Twins

I'm trying to think of how to title this post. There isn't a single appropriate suggestion running through my head.

I'm in the ER with Emily anticipating a long night.



We visited the pediatrician today where we learned Em does not have strep, mono, infected ears, or congestion in her chest.

He did a blood count and her white count was 16,000. That's really high for her. He wanted me to take her to the ER and find the source of infection. I talked him into giving me an antibiotic and promised to bring her in if she got worse.

Welcome to worse. This afternoon her temperature spiked to almost 104. She's refused to eat for two days, but I thought I was getting enough fluid in her. At bedtime, Jeff and I realized she hadn't pee'd all day. 12 hours no pee= not good. Then she started moaning in pain and said her back hurt. We could barely touch her without her screaming. Her fever is barely staying down on Motrin, so I decided to leave Abby and bring her in.

I'm trying to think of how it feels to be in the ER with Abby at home and I guess just numb. I can't process this. We are running IV fluids, and waiting for CT to rule out appendicitis or other belly ailments.

I would love to sit in a corner and cry for a while, but I won't. I am going to take care of this child, and then head home and take care of the other one. Twins. I think that for today, that says it all.

Last

What do I say about today? I'm about to start Abby's last bag of TPN. We didn't get a delivery today. A box came from the pharmacy, and my heart jumped. For a minute I thought they made a mistake and sent it anyway, but it was just meds. In the beginning of this week, the doctor told us it was best to finish what we had here and let that be it.

I know how sick she is, but there just aren't words for how hard this is.

Look at your child smile. See that sweet face light up, and ask yourself if that one, that smile, is the one you could let go.

Because Abby has CP, and we have been faced with the possibility of losing her since day one, I think sometimes this seems easier or expected. I feel like I should be prepared in a way that those with typical children aren't. I'm not though. That little girl filled my heart the second I knew she was coming, and as challenging as life has been, she still fills my heart.

She is really suffering physically, her body is shutting down system by system, and I understand what's happening. She is dying, and there is nothing I can do to stop it, but there is this awful weight in my chest because this thing I don't want to happen is happening anyway. This very moment I'm in started 14 1/2 years ago when she was born. The minutes that her brain was without oxygen ultimately brought me to this day. This day, I have to know in my heart that I have loved her with everything I have, and hold her hand until she is home.

It hurts, physically hurts, to begin to say good bye. I don't know why I ever thought I could do this if the time came. Their entire lives I thought I would let go so they could be healed and whole in heaven. I thought there were worse things than death. I still think that's true, but those left to go on without them, I had not considered.

To top off all of it, Emily had a 103 fever last night. Today she was just sick. The pediatrician came by today and thought it was just a virus. She just went up to 102 again, so I'm not sure what to think.

As I said, the doctor came today and saw both girls. So sweet of her to make a house call. We made a few med adjustments, but overall, comfort is what we are still working towards.

I know we have a lot of people praying, and I appreciate that more than I can say. Please pray Emily stays out of the hospital too. I don't even want to think about that scenario.

Letting go

Abby continues to show signs that her body is shutting down. Her kidneys aren't functioning as well. She is having a lot of trouble with fluid in her feet and she wakes up very congested.

We are at the point where fluids aren't actually helping her and are probably making her worse. Continuing IV fluids will just make her passing less comfortable. We have held on as long we could, but now her body is telling us all that it's time.

My consistent prayer through this entire illness was that God would take this decision from our hands. I don't want His job. Life is His to give and take away. What's happening now is our answer. She is continuing to decline no matter what we do. I know that the best thing we can do is let her go gently and peacefully.

Today, I was very, very sad because I will miss her so much. But I also felt very, very peaceful.

There are so many things to do each day, so many emotions coursing through me. I've often wondered where God is in all that business. Those things have to be done. They are the things in my life that make me feel like I have some measure of control over this.

I can (and do) run around like crazy, make choices every day, work hard, and move through many situations myself. I can handle just about anything. But no matter how hard I work or how successful I think I am, I can not have peace in any of those things without God. He is the giver of peace, and I have that about Abby.

She is an amazing little girl. I am so very thankful she's mine.

I read this today, and really loved it:

Giving Up and Letting Go
Giving up implies a struggle--
Letting go implies a partnership
Giving up dreads the future--
Letting go looks forward to the future
Giving up lives out of fear--
Letting go lives out of grace and trust
Giving up is a defeat--
Letting go is a victory
Giving up is unwillingly yielding control to forces beyond myself--
Letting go is choosing to yield to forces beyond myself
Giving up believes that God is to be feared--
Letting go trusts in God to care for me.
~Hank Dunn


- Posted using BlogPress from my iPad

Changes

Hannah moved back to school yesterday. It was bittersweet for all of us. She kissed Abby goodbye and had to go. It was so hard for me to tell her to say goodbye knowing it was probably for the last time. We all had heavy hearts leaving.

We decided to take everyone except Abby to move Hannah in. She rented a house this year with a roommate , so there was quite a bit of moving in to do. Grandparents kept Abby, and off to college we went. It was so busy there, and such a stark contrast to our home lately. There, life is moving on at breakneck speed. Kids are everywhere and it's excited and energized. Our house is quiet and what I hope is peaceful. I was overwhelmed with all the activity.

Hannah's place is cute, although small. It's good for her to have her own room and a little space this year. She's excited about her classes and being back. I'm happy for her. It was time for her to do something else. I just hope and pray she can push through and have a good year.

When Abby woke yesterday, I knew immediately that something had changed. Her breathing was slightly labored, her hands, feet, and face were swollen, and she was less responsive. I felt so torn leaving to move Hannah in, but decided to go. As the day went on the breathing evened out, but her feet remain swollen. She is far less responsive than she was even Saturday.

When we came home, she wanted to play with Sarah, but mostly slept through it. When I layed her down last night, she was taking two short breaths and then nothing for 12-15 seconds. I tried to breathe only when she did and felt starved for air. She seemed comfortable and peaceful though. I held her for three hours like that. I had to get up to shower (moving is sweaty business) and start TPN. I slept in her bed last night and surprisingly, slept well. Her breathing was much more regular by then.

As we suspected all along, the amount of pain medicine she needs to be comfortable makes her sleepy and changes her respiratory status. TPN is really irrelevant now.

Sarah and Emily start school on Monday, and again, I think this timing stinks. We've had all summer to focus solely on Abby. For weeks, she has been the center of the universe. Now the other children need to meet teachers and pick up schedules. We've had school shopping to do, and Abby is sicker everyday. Even if I had time to get the others settled in school and have each day to spend with Abby, it would be alright. She doesn't have that time, though. My feeble little human brain can't comprehend the how's and whys of now. But I still ask, why now?

I don't know, but I still believe there is a reason for everything.

There are many changes in our family everyday now. I'm not loving it.


- Posted using BlogPress from my iPad

Odds and Ends

~Good news first. Our family pictures turned out great. We got very sweet pictures of everyone. I am very happy with them. It's a relief to have that done. I thought I would have to give up on that particular dream. Having them now is something I'll always treasure. 

Emily, Sarah, Hannah, and Abby

We have a lot of them to go through so I'll post as we go. Thanks for praying with us for these. Thank you, God for this blessing.

~ Hannah had a root canal today. NOT fun, but again, thankful its done. That was not easy because Hannah strongly dislikes hates needles. This was attempt two. The dentist gave her Valium, which did the trick. :) 

She starts classes Monday. There is so much to do for her. I doubt we'll get even close. She'll have to make do for now. She has to move in this weekend.  When we have a little more time we can catch up. Another year of rushing her to school and running back home to a sick child is insane. We all seriously need some calm.

~ Sarah's doing well. She is loving on Abby all the time. She is a wonderful sister. As much work as Abby can be, she loves her and will do anything for her. At the end of photos Abby didn't feel well, but Sarah didn't care. She said she wanted her picture with her anyway because we would know Abby was in there. I love that little girl.

Sarah and Jaws--I mean Glory

~ Emily has been sick the last 5 days. She's running an on and off fever. She's needed break-thru seizure meds all of those days. Today she started throwing up. She didn't keep much down all day. I did manage to get 6 ounces of pedialyte in her tonight. I think it's just a virus, but we all know too well how awful virus' can be for my girls. I'm praying it's nothing, and so far she looks okay. Her nurse has been pampering her, which she loves. This is a cool washcloth on her head and her favorite snuggy. Lol

She's a princess

~ I found someone to design my new blog and I am so excited to work on it sometime in September.  I loaded a quick template because those pictures at the top were driving me crazy and somehow my pages got moved and I couldn't move them back.  Anyway, I am thrilled that someone who actually knows what they are doing is going to help me :))  So. Excited.

~ Abby Grace. She had her baclofen pump refilled today. It wasn't a good appointment. We had to wait 25 minutes just to check in, which made me unreasonably nutty. Normally that wouldn't bother me, but today it did. That was her last doctors appointment, and they know how sick she is, so I thought it shouldn't have taken an hour. It was hard on her physically, and very hard for me emotionally. Everyday, every single day, I still want this to be different for her. 

Today at the doctor.  And why most of our pictures are in black and white ;)

Her bowel sounds continue to be intermittent, with all sorts of other nasty symptoms of GI shutdown. She still has awful days and smiley, happy, Abby-times too.

It's breaking my heart every day. I want this to be over so badly, but I can't imagine life without her. I think of her healed and whole and smile. I think of her empty room and can't breathe.
 

Typical, Jeff and I smothering her with kisses while she yells at us. 

Jeff and I have very hard choices to make very soon. Knowing that and actually doing it are very different things. We love her so much, and simply can't help loving her a little selfishly. Through this entire process we've wanted to do what is best for her. I just don't want to miss her like that. I want to hold her. It's all I've ever known.  Accepting it might be time to let go feels like I'm really saying I'll be okay without her smiling face in my life, and that will never true. I feel like doing what's best for her would be the worst thing for all of us who love her.

I always thought it took so much strength to hold on all of these years. Turns out, true strength will be found in letting go.

Same

I'm pretty sure I'm a broken record by now. Each week is the same roller coaster it always is. Saturday was a pretty good day. Sunday, in the top five awful pain days. She is simply sick and every day all of those around her ache through it with her. We love her so much, but hate how bad she feels.

Her Baclofen pump is being refilled Thursday, so hopefully she feels alright that day. I would love to take her somewhere else that day. I don't really want the doctor to be the last place we take her.

Tomorrow we are doing family pictures at our house and I am praying for just one Abby smile. Just one more. One more time I'd like to get that sweet grin on film. They are rare now. She smiles, but not often.

I can't imagine there is ever a good way to lose a child, but this seems especially bad. She really needs peace now. No more days with pain.

There isn't much to say that I haven't said before. Every word before now is still true. It's just very, very sad.

Please keep praying with us, and pray especially at 10:30 tomorrow that Abby would feel well enough for pictures.

Dream

I think everyone knew the Morphine pump would change things and it has.

Abby is definitely tired and more drugged. She does have better, much more consistent pain control. She still has pain, but it's not the same. Yesterday, they upped her overall dose to try to get it completely under control.

It is very hard to see her at this stage because we know her days with us are few now. Most of the time, I feel very peaceful about that. Thursday, Jeff and I looked at each other and knew the time stop TPN was near. It's still going for now, but her body is slowing down on it's own. Some mornings her breathing is different, then it evens out. She wakes up with a rattle in her chest. Sometimes her feet and face swell a little. The tummy sounds continue to be intermittent.

Everyone told us we would know when it was time. That didn't seem possible until we knew.

Thursday night, after the conversation about stopping I was exhausted. I fell asleep fast and hard. I had a dream that Abby was flying over lakes and creeks, and gorgeous green banks and landscapes. Everything was so beautiful. I was completely taken in by the joy in the experience. Then it suddenly hit me that she would hate that. She doesn't even like the tram into Disney. There is no way she would like to fly fast like that. Then I was sort of in her and could feel what she was feeling. I realized she could see. She was taking in all of the beautiful sights for the first time and she wasn't afraid. There was such peace in her that I instantly felt calm. There aren't human words for the overwhelming goodness of that feeling. She was so free and happy that I woke with tears in my eyes.

Of course I went to check on her and she was still okay, but I couldn't sleep after that. I kept thinking about how beautiful that experience was going to be for her.

Then I began thinking of the practical, physical details of death that had to be dealt with. Friends, there are many. One in particular is the Baclofen pump. Abby's alarm date on that is August 26th. Our appointment to fill it is August 23. She is very sick and may be too sick to go to the doctor then. We are trying to move her appointment up to early next week, but they only fill pumps on Thursday. That would mean keeping the TPN going until after that. Even if we stopped now, she could hang on until after the alarm date. That isn't a scenario I want to explore. We are still working on an early week appointment.

Then Hannah starts classes the 20th. I feel so bad that she will start school and then have to deal with the loss of her sister, then go back. I keep saying that I trusted God with the timing, and I have to trust Him with Hannah too. We talked to her about it to try to prepare her for a difficult situation, but I don't know if anyone can prepare for this.

The social worker encouraged us to have Hannah and Sarah write letters or select special items to put in with Abby after she passes. Both of them were in tears over the thought. We told them they didn't have to, but they could if they wanted. Their tears, above all else, breaks my heart. I shared my dream with them and spoke again about Heaven, but as Sarah aptly said "our house will be quiet without Abby, and I don't like that much quiet".

It's a very busy, difficult time here. But then there is peace too. Please keep praying for God's perfect timing and all of the details to work out.


- Posted using BlogPress from my iPad

Quiet, and not so quiet

I wrote a post two days ago that seems to be lost in the blogosphere. It's unfortunately gone, so this one has to be a condensed version, adding the last two days. :/

Quiet has described Abby's tummy for two days. All the normal gurgles and plops that a belly makes were gone for 9 hours Monday. It was awful to hear the silence in that tummy. We didn't know what was happening, and our (kidspath, pediatrician, and us) thought the ileus was progressing and it was the end of the road. All day Monday, I walked around with such heaviness in my chest. She played and didn't look too bad, which is typical Abby. She's not going to give up easily.

Later that afternoon, her tummy gurgled a little again, and with its return came awful pain and nausea. Yesterday, she had intermittent bowel sounds, but a lot of pain. Too much pain. We made the decision to begin a continuous morphine pump today. The TPN will go for now, but we are nearing the end of our list of options. Her poor little tummy is so much sicker than her spirit. She wants to keep going. I feel so grateful that through all of it, she has remained herself. We didn't lose that part of her that made her who she was. Strong, smiley, feisty Abby Grace.

That may change today with continuous morphine around the clock. I'm preparing for that, but knowing Abby, I doubt it will bring her down too far.

As usual, I fell asleep last night questioning our decision to start the pump. This morning she woke up not so quiet, but screaming in pain. It took 40 minutes and every drug we have to get it under control. That answered any question I might have about what to do.

We don't know exactly what is going on inside her belly, but it's not good. The pediatrician called GI yesterday, but he just wanted to admit her to the hospital. We aren't doing that for any reason anymore, so we are just guessing that Abby is having intermittent, complete ileus. This is not the way we hoped it would go.

When we left the hospital after that BIG decision to stop TPN at some point, we felt confident that we were making the right choice for her. At home, kidspath thought we could control her pain and then see what she looked like.

Quite a bit of time has gone by, and she is still in daily pain. Kidspath sent Abby's case to pain doctors across the country, and what they learned was that this type of pain is extremely difficult to control. Although this downward spiral Abby is on is rare, it's not unheard of. There are very few things we can do for her, and frustratingly, it seems that even comfort is included in that list.

So that brings me to another day, I am praying for comfort, and good quiet for my girl.

As far as the other girls go, they can't wait to go back to school. It's very difficult for them to watch their sister in pain. Emily is doing much better, but she worries about Abby. Hannah and Sarah are bored because we can't leave the house much. They understand, but again, school is looking good to them.

This is one of those days I just don't want to do, but I will. I do have peace with where we are, and for that I am grateful.

- Posted using BlogPress from my iPad

Funerals

I may have mentioned in previous posts that we are trying to take care of the details of our inevitable situation now. We want to focus solely on Abby, and having those things hanging out there bothers me. I want to be finished with all of it. I'm not sure I can do this after she's gone. Right now, I make an incredibly difficult phone call, and then go hold her hand. I walk quickly by her and ruffle her hair. Little things that remind me I don't have to miss her yet.

I never went to a funeral as an adult until my friends baby died. Then a NICU baby in the room with my girls died. Of course, no one likes going to funerals. I might appreciate it less than others. Planning my own child's is more than surreal. It doesn't even seem possible.

Jeff's mom went to the mountains last week to mark the spot for the funeral home in the family cemetery. Its beautiful. She took pictures for us, and as sad as it is, we have some comfort in knowing she will be in such a beautiful place.




The little flag in the center marks her spot. Emily's is right next to it.




Looking straight up to the top of the hill.




The view looking down the hill from their place.




I love this. This is where my babies will be one day. This is where Jeff and I, Hannah, Sarah and the families they will have, will visit. This what we will see from a little mountain cemetery.

Again, comforting. It feels solid. That mountain has been there for thousands of years and will continue to be there.

I finally got up the nerve to call the funeral home here in town. Jeff and I will meet
there next week to choose a casket and finalize arrangements for transporting her (the mountains are 3 1/2 hours from us). This is very, very hard but the more we get done, the easier it is. I feel like making less emotional decisions helps me feel like I am doing what I hope to for her.

Because it's a little far from us, we will bury her quickly and privately when the time comes. There will definitely be a memorial service that I hope all of our family and friends will join us for.

Abby is doing relatively well, but as her kidspath nurse said this week, she is the definition of medically fragile. Every minute is so different. She requires intense care. Even home health nurses won't do most of it. They assist, but because almost all of her meds are IV now, and not compatible with TPN, they don't want to take chances on messing it up. That means I give almost everything. It's not very hard, but I am tired. She is fighting, so we are too. She is determined to really live in the time that she has. I am learning to do that right along side her.

We know that each day something could happen that would change everything. She can not recover from this. Having nonfunctional intestines is not compatible with life, and one day she will get sick. She's certainly hung on longer than the doctors thought she could, but as I've said many times, God has numbered her days, and He will decide which one of those is the day for a funeral.