ups and downs

I literally have 4 posts in the "draft" phase from the last 2 weeks.  I start writing in the morning and by night time it's not true anymore.  Some days are good--one post is even about 2 really good days in a row for Abby.  In one she actually drank 6 ounces of juice over the course of a single day.  I was so excited about it, but the post was about being afraid to hope sometimes because the let down can be so hard to take.  Before I published, she was up that night for 3 hours with belly pain and gagging. 

I have had some of the best days we've had since this mess started and then I've had TERRIBLE days with Abby.  She ran a fever on and off all week last week.  Some days it was 101.5, other days below 100.  I've been a nervous wreck.  I took her to the doctor 10 days ago for being very irritable and fussy.  The pediatrician didn't like the way the line site looked, so she sent us to the hospital.  We spent 7 hours in the ER waiting to see the surgeon who decided the line was fine, but they drew blood cultures anyway.  We barely made it out of the hospital that night because her white count was 7.0 and the irritability made them concerned she had something brewing.  A count of 7 is HUGE for Abby.  In the end, I agreed to come back if anything changed and if the cultures showed anything. 

She fussed and cried all day Friday and Saturday which is about to make me lose my mind.  I can't take all this crying.  The hard work, the worry, the struggles, the exhaustion...all of it....I can handle, but not when she's screaming at me like some-one's killing her.  It's part CP, part Abby, part just plain old temper that makes her do that.  The part I don't know about that scares me is wondering if something else is wrong.  And of course...the fever!  Just when I was about to take her back to the hospital, it was down today, and she was nice all day. 

It's been tough and I'm not going to lie, I'm tired.  I'm trying to find a place in all of this that feels comfortable and normal to me.  I honestly don't know where that is.  Even now as I'm typing my cat keeps attacking my hands.  Apparently absolutely nothing is easy. 

One thing I did realize this weekend was that I hadn't opened my bible in a while.  I was really struggling with the Emily and Abby screaming and began to pray.  I was feeling very much alone and wondering where God is in those terrible moments when I want to give up.  I was suddenly aware how little time I'd spent with Him lately.  I'm reading mindless books, watching silly TV and hoping that God would just fill that gap for me.  He meets me where I am, but He also needs me to look up from what I'm doing and take what He offers.  I opened my bible this morning and instantly felt peaceful.  I read about the faithfulness of God as we are faithful to Him. 

I have to stop now or my there will be nothing left of my hands, thanks to the kitty.  As usual, we are taking this life of ours day by day. 

A few highlights from the last few weeks:

Chocolate Cheesecake pop at the Lexington BBQ festival (GOTTA Love NC~!)

I have more, but they won't load.  So I'm going with it--hopefully I'll have time for a picture post soon. 

Please pray for Abby when you think of her.  Pray she stays calm, happy, and feels well--and NO fever.

Hard days

I spent yesterday in the ER with Emily.  Apparently she has a stomach virus, and it just wiped her completely out.  I took her to the pediatrician who sent her straight to the ER.  She had x-rays, CT scan, blood work, etc.  I think we were all looking for a very serious problem because she looked so awful, but there wasn't anything there.  Her white count was fine, so she just got fluids and we were able to come home. 

It was such a huge relief to walk back out of the hospital without having to stay.  She perked up some today, so obviously the fluids made a big difference.  She slept for about 24 hours and I started feedings back again today.  She's still a little weak, but not nearly as bad as Sunday when she could barely hold her head up.  Finally, a normal little virus!  Not that I want sick kids, but I'll take normal anywhere I can get it.

Abby is another story, as usual.  I don't know what in the world is wrong with that girl.  She is making me nuts though.  She has fussed, cried and been generally unhappy for the last two days.  I don't know if she's feeling bad, if she has Em's bug, or if she's feeling good enough to actually throw a fit.  She's not sleeping well, doesn't want to help me with house work like she normally does, and she doesn't want to play.  She doesn't have a fever and she isn't more swollen or nauseated than usual, so I don't know what to think.

All I know is that I am really, really tired of being around her right now.  That in itself produces a huge range of confusing emotions.  She's not doing very well and no one knows how to help her.  I don't know how long I'll have her with me.  Some days she seems like herself and I can't imagine that she could die.   Some days I can't even begin to imagine she could recover.  Then there are days when I want to throw in the towel and just be done myself.  I am so tired of taking care of her, especially when she is screaming at me. 

I have had several conversations with God about it.  I don't know how to feel.  I think I want all of this to end without losing my child, so essentially, I want a miracle.  I want her to wake up and walk to my room tomorrow morning and say something ridiculously casual like "hey mom...why are you still sleeping?" 
She won't though.  She'll cry until I come into her room and turn her over, place a pillow between her knees so she doesn't rub them together, stop her IV, hook up her feeding, medicate her for the nausea I know will come and dress her for the day.  I will put her in her chair and pray that we go back to sleep in our own home that night. 

Days like the last few with Emily sick and Abby crying all day and night make me realize how fragile this little set up I have going is.  If nothing moves outside the lines I can handle it.  I can take care of the girls, the house, my marriage, my other children, and whatever else I do in a day.  Living outside of those lines sends me  for a loop.  I don't like it.  It makes me wonder where in the world God is in all of this.  I desperately want Him to step in and fix this.  Fix something.  Help me through this.  I'm sure He is, but I can't see it.

I just have to continue to choose to believe that He is with me because He says He is.  I choose to believe that He loves Abby and me when I can't feel it, and spend another day trusting a plan that doesn't make sense to me.  Noah built an ark without a drop of rain, right?  It doesn't do any good to try to build the boat when the water's up to your neck.  I. still. believe.  Especially on hard days. 

I know that my redeemer lives, and that in the end he will stand on the earth.
And after my skin has been destroyed, yet in my flesh I will see God;
I myself will see him with my own eyes—I, and not another.
How my heart yearns within me!  Job 19:25-27 (niv)

Skunks

Jeff started his day with Emily yesterday with her customary viewing of Clifford the Big Red Dog.  She likes Clifford and routine.  Both of those things should have kept her right on track for a good beginning of a school day. 

It wasn't though.  Emily was edgy and continuously threw her hand into the air, as if she was afraid.  Jeff wasn't sure if she was having some new, strange kind of seizure, but decided to hold her in the recliner until her "case of the sadies" passed.  Then there it was.  Nearly 20 minutes into the episode; the reason for the erratic behavior.  A skunk jumped out of the bushes at Cleo, and Emily went nuts! 

Emily has a well documented fear of skunks.  Even cartoon ones.  They often point their offensive bottoms directly at the screen (and consequently, my child) and "defend themselves". 

Poor, sweet, Em.  She couldn't say "hey Dad!  This episode scares me because it has a skunk".  She had to bear through it because we didn't know any better. 

Emily is otherwise doing fine.  She's actually doing great.  We took her to the Dixie Classic fair this weekend and she had an awesome time.  She is totally my roller coaster girl. 

We've had lots of visitors now that we're in NC.  We are so close to family that we have people coming by often.  I love being able to see people and let the kids get to know with their family again.

my mom, my aunts and my girls!  SO much fun :)

I'm missing my church family a ton right now.   I want to just get up and go to church on Sunday, and we don't have a place for that yet.  Abby has been so sick that it's tough to find somewhere, but I'm confidant that God already has it worked out. 

A few pics from her last hospital stay:

After her Broviac was put in

Getting her hair washed!  This thing was so cool.

feeling a little better

Speaking of Abby, she's still hanging in there.  We are finishing up the IV antibiotics, which was so much more work that I realized it would be.  It was also very stressful every time I hooked it up.  Each time the line is accessed is an opportunity to introduce bacteria, so it was difficult.  I'm just thankful it's nearly done.  It was my "skunk".  I know the possibility of infection is out there and waiting for it to jump out at us has me edgy.   

She's running a low grade fever, but we were able to meet with a GI who specializes in motility.  He said that any kid off the street with Abby's set of circumstances would be sitting where she is.  Dysmotility is a complicated and difficult problem to overcome.   He is going to put her in the hospital in a few weeks for some specialized tests to help determine the exact problem.  He gave me tons of information, but I think he's our best shot at making her more comfortable. 

So that's what's going on with us.  Emily and I are still concerned about our own respective "skunks" lurking about, but we are both trying to relax a little and enjoy what's in between. 

Abby

Quick update:

Abby's home and doing alright.  She's still on IV antibiotics and we have tons of Dr.'s appointments coming up. 

The line went in fine, and I'm over not wanting it.  What's done is done. 

Thanks for keeping her in your prayers!  She is a blessed little girl. 

Lines

Abby's in surgery right now getting a new central line.  I just didn't want it.  Jeff was here with her last night and signed all the consents.  I didn't realize he had done that, but I'm glad he did.  I dreaded signing it again as if I'm some how agreeing to what's going on.  I'm not.  I know she needs it, but I seriously considered just taking her home and working on feeds without it. 

I know that it's a plan that won't work, but I want it to just the same.  I want this to be over for her.  I want it to be over for all of us. 

I spent Saturday night and most of Sunday at home and Jeff stayed with Abby.  It was so nice being in my own house without having to think about feedings and fluids.  Emily woke up after 8 am (that's sleeping in :), but she woke up quietly and sweetly.  I fed her and gave her meds, then laid back in my bed and drank my coffee while she watched cartoons.  It was so easy. 

I got up, cleaned, unpacked a few boxes, and organized the house a little.  I walked around completely relaxed for a while.  And then it hit me like a ton of bricks.  I want this.  I want to relax in our home.  I want Abby to feel good.  She doesn't though.  She really doesn't.  I'm afraid that her little body can take much more than I think it's fair to ask her to.  I feel guilty for wanting it to be over.  I feel guilty for putting her through so much.  I don't want to feel any of it. 

If all goes well, we'll take her home tomorrow on IV antibiotics and fluids.  Her feed rate is back down to 30, so yet again, we start over.  We are still trying to keep her off of TPN, and so far, so good. 

So a new line it is.  Lines, lines, lines.  Tying us all to this situation.  Eventually it has to break, right?