Better?

The last two days have been a roller coaster. 

Abby slept some Tuesday night--not great--but sleep.  She woke up Wednesday with the same tightness and fussiness she'd been having.  I was really concerned about her Baclofen pump because I haven't seen her muscles so tight since the pump was put in. 

I made a series of phone calls trying to figure out what to do.  I was on the phone for more than an hour trying to find someone to evaluate the pump.  The Dr. who does the pump said that what we were seeing could be Baclofen withdrawal.  Suddenly stopping the medicine can be life threatening, so they called the neurosurgeon.  We got a call back a few minutes later telling us to come right in a be prepared to go to surgery. 

That was a panic moment.  About 15 minutes later as I was about to walk out the door, they called back and got more details of what was going on.  They decided the Ortho Dr. who does Baclofen should evaluate her first.  We ended up at her regular pediatricians office, who ordered all of the x-rays we needed.  We went for those and then went home for the night. 

We saw the ortho. today.  She didn't see any obvious kinks in the tubing, but she said it is very flexible and can be compressed.  I think Abby has gotten very thin, and her bony little hip might be pressing on the line when she's in bed.  That is entirely possible, so we are going to try to establish a pattern to see where the problem might be.  They removed all the medicine from the pump and put new in, just to be sure the medicine itself is good.  Then she gave her a bolus of Baclofen in case there was a little blockage in the tubing itself, the pressure of the quick medicine might be able to clear it.  We also increased her overall dose. 

I am hoping this helps her.  She really doesn't need a big surgery.  She's very thin, and those stiff muscles are burning calories she can not afford to lose. 

So far she is looser and seems more comfortable.  This has been a crazy-stressful week!  It's 8:30pm and the twins are fed and snuggled up in bed.  Hannah and Sarah are chillin' out, and as we all know, THAT is a huge blessing!  I have tons to do around here, but I'm going to relax and enjoy a few quiet minutes :)

I'm cautiously optimistic that Abby is either going to feel better with what we already did or we will be able to figure out where the tube could be compressing. 

Oh--and good news!  Her hips looked GREAT!

Whispers

"Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.  That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."  2 Corinthians 12:8-10 (niv)


Well, I doubt it's necessary to state the obvious, but I will anyway.  I only made it four days into my 'writing daily' goal.  I'm not going to beat myself up too much over it because I'm too tired.  That's one blessing of total exhaustion.  It takes a reasonable amount of energy to be really hard on yourself. 

The last few day's have been hard.  Really hard. 

I have struggled with myself, my kids, and my God.  I spent last week feeling lonely and very much alone.  They are not the same.  Lonely needs a friend, alone needs a spiritual pit stop.  Living with such intensity and responsibility had me struggling with God.  How could He think I am capable of this?  How could He think I would want this?  How could He ask me to watch my children go through so much.  It was as close as I've ever been to saying NO.  No, I don't want to do this.  I know you are bigger than everything I am or could ever dream of being, but I do not want to do this anymore.  Even if you ask me. 

Conversations like that with God take a toll on the whole person.  I felt tired and empty.  I wanted it to all go away.  I wanted to be like everyone else.  I wanted to go to church and not look for stairs or worry about access (Churches--We have got to do a better job of welcoming our disabled friends!).  I wanted to be able to just get up and go, but I couldn't.  I was frustrated that the Lord was so quiet in my heart lately. 

Then Abby got sick.  She started crying.  All the time.  Sunday, Sunday night (all night), Monday, Monday night (all night).  Screaming, out of control for hours at a time.  Yesterday her muscle tone changed drastically.  She was suddenly rigid and difficult to move.  We thought the Baclofen pump had failed.  Baclofen withdrawal can be very serious.  We got up this morning and took her to the ER.  By the time we got there she was completely different.  Floppy and lethargic.  They did a full work up and agreed that something was wrong, but they didn't know what. 

It could still be the pump because they were unable to interrogate it, so we have to follow up about that.  But the belly was normal for her, her hips were ok, the blood work, urine, throat and ears were all ok.  The only abnormality was a heart rate in the 140's (which it still is).  So why do I have an altered child?  The short answer is we still don't know.  The ER's best guess is seizures, or pain somewhere we haven't identified.  Jeff and I decided to bring her back home and see how she did.  She's still lethargic, so we don't know what to do. 

During all of this, Emily fell off her bed.  She knocked her front tooth loose, and of course it bled terribly.  She also has a bruise on her cheek.   I was immediately grateful that she wasn't seriously hurt.  I was also thankful that the tooth was still in, but it has some healing to do.  I'm praying it's okay.  It was scary because of her seizures and because of everything going on with Abby. 

So much.  So, so much.  As I was dealing with all of this, I thought about feeling so alone.  Can you imagine what it's like for people to deal with life without a belief in God?  I wondered what it would be like to be truly alone.  How would I have the strength to be typing on 3 hours sleep in the last 3 days?  I haven't slept more than 30 minutes straight since Saturday, Abby's still sick, everyone and everything needs something from me.  And suddenly I don't feel alone.  I know He is with me. 

I love that in our weakest moments, we see God so much clearer.  As C.S. Lewis says "God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains:  It is His megaphone to rouse a deaf world". 

Abby's starting to cry again, so let's pray that just for tonight, God whispers to me in my sleep. 

Ground Hog Day

Since I am trying to write daily, just for one month I am acutely aware of the reason I do not write daily.  I'm living Ground Hog day. It's basically the same over and over. 

I wanted to do this for me.  I thought if I could look at my life day by day, I would understand more about myself and what I'm filling my life with.  It turns out it's mostly laundry.  Boring, huh? 

Emily and Sarah went back to school, and I gave Abby a shower this morning.  She absolutely hates the shower.  I don't know why, and I don't know how to make it any better for her.  We've struggled with this for most of her life.  She has never liked it.  We do it because we have to, but none of us look forward to it. 

As usual, she started screaming her head off the minute she realized what was up.  My only goal was to not get horribly frustrated with her.  I prayed, then stuffed my ears with toilet paper and calmly gave her a shower.   It turns out that without being able to hear her quite so loudly, I stayed very calm.  I didn't speak to her or try to talk her out of a fit, I just let her go and did what I needed to do.  Without me to trying to reason with a howler monkey (aka: Abby), she just stopped.  She gave up the fight in the middle of the shower.  Who knew?

I changed the dressing on the Broviac which looked remarkably good, and then she and I went on to have an uneventful day. 

She is complaining of hip pain lately.  I guess she needs an x-ray, but I don't want to deal with an ortho doctor right now.  Kids with CP often have hip problems.  We have been blessed to not have major issues there, but that doesn't mean it won't happen.  If she keeps complaining, I'll have to do something.  Obviously, I'm hoping she doesn't keep complaining. 

That's pretty much my ground hog day.  Tomorrow I will have more laundry to do.  Abby will be taken care of.  The girls will go to school, and like every other day I will do all I can to trust God in a situation that makes no sense to me. 

Baby tooth

It was a baby tooth.  Thank God.

They pulled it and thank you Jesus that's one thing that won't be a problem.  I am so relieved.  I really thought that was a permanent tooth, but it wasn't. 

Okay, now to move forward with my day :)