Easter and Sunday's

For the first time in my life, I spent Easter away from family.  Jeff is usually here with us and my mom has come (where ever I've lived) since I moved from home.  This year, Jeff was in NC and my mom postponed her trip until June for Hannah's graduation.  One would think it would be lonely, but it wasn't.  God in His goodness provided sweet time with my children and my church family.

We spent some time on Easter Americana.  My girls still love the cute, traditional stuff and we have fun with it.

I spent Friday morning at the beach with Hannah and Sarah.  It was a much needed break from all things medical.  It went by unbelievably fast, but we were all grateful.

We had fun with Easter eggs, although Abby wanted no part of it.  I love coloring eggs with them :))

Through all of this Abby continues to struggle with the belly, but she is gaining strength and endurance. We'll probably make more changes this week to try to get her stomach working better. I'm ready for the IV to go. She's not, but I am. :)

I didn't realize she had gotten so TALL!

On Friday night I watched The Passion of the Christ at church.  If you have ever seen that movie, you know how hard it is to watch.  I sat there and felt such sadness over the cruelty of humans toward one another, knowing that even today there are those who would do the same, and laugh at the persecuted. The knowledge that ultimately, it was not the hands of Pharisees, but my own sin that nailed my Lord to that cross is unfathomable. 

That crucifixion was not about the will of a blood-thirsty crowd, but a means of forgiving the sins of the fallen world.  I can so easily excuse "little sins" in my own life, or less than purposeful omissions and sinning in anger is just so easy to do (surely God understands anger, right?).  Watching the way my Lord suffered and died so that I might find absolution and relationship with the Father brings me to my knees. 

I am watching my own child suffer far less a burden than the Son of man suffered and I would do anything to take it from her.  I would move heaven and earth it if were within my capabilities to ease tummy pain.  God allowed his only son to be sent to earth to die for the very hands that killed him.  To suffer for the sin of the world. 

Thankfully, it doesn't end on the cross.  On Sunday, my Jesus walked out of the tomb, and so I have the opportunity to live a Sunday life.  My Dad sent me this link, it's very powerful!  Do you live the gift of Sunday or in the sin and death of Friday?

I often quote to my children "to those whom much has been given, much is required" (Luke 12:48 NKJ).  This is true, as far as I'm concerned with our talents, words, resources, time...whatever we have falls under the category of "much" in an individual life, and therefore much is required.   We have all been given much in the gift of life and the promise of life eternal.  It makes me stop and ask myself; am I fulfilling the requirements of all that has been given to me?  Is my life worthy of the calling which I have received?  I think I owe my Savior a great debt and will have to more actively seek ways to honor it. 

I hope and pray you all have had a blessed Sunday and remember that you have been greatly gifted!
 

But they found the stone rolled away from the tomb.  Then they went in and did not find the body of the Lord Jesus.... they said to them, “Why do you seek the living among the dead?  He is not here, but is risen!

Luke 24:2-3,5 (NKJ)

Quick Abby update:

She's the same. 

There!  That was quick.  And not true. 

She is mostly the same, still on the new formula, though we might change it this week again.  Still running at 45, still has the IV every night.  Her intestines are still very slow, her belly still puffy. 

I'm still trying to figure this out, as are the doctors.  Abby is an unusual little girl, so there is no real standard of treatment for this problem.  We have to just wait for her belly to work again.  It's been 9 weeks now.  We're still waiting.  The Dr.'s  tell me gastroparesis can last for years in children with severe neurological impairments.  Abby obviously has higher brain function, so they don't anticipate it lasting so long for her, although they didn't anticipate it lasting as long as it has. 

For her, it's not only her stomach but her entire digestive tract that's the problem.  Her swallow isn't good, her stomach doesn't empty well, her intestines bloat, and she has a very difficult time with bathroom issues.  Eventually, It'll all start working again and we'll be in business!

I do think she's made some improvement.  Her belly wasn't nearly as big today as it has been.  She's also taking small bites of yogurt everyday.  That's the only food she's interested in, but that's fine with me because she doesn't choke on it and it's easy to digest. 

I've been on a roller coaster of emotions from frustration to exasperation to quiet moments of acceptance.  The hardest times are when it's difficult to imagine her being able to recover.  She's so far from where she's spent her whole life.  No more can I imagine her being back to her normal than I could have imagined being where we are.  I am praying that God would allow something to change.  For better or worse according to His will.  This limbo is not my happy place.  I recognize that God isn't always interested in moving one to a happy place, but it's my prayer none the less. 

I know she won't go back to school this year.  Oh, this is funny.  I got a truancy notice,  I was going to have to appear before the truancy board because she isn't enrolled in the hospital/home bound program yet.  That made me laugh. We did have to enroll her in home bound, but it's taken care of.

If it weren't for our planned move this summer I wouldn't feel so much pressure for her to get better.  We do need to move though.  I can't wait to see what the Lord has in store for all of that.  Since Jeff lost his job, I've known that God wasn't surprised and felt strongly that He was purposely moving our family.  I have to continue to trust that. 

So, I'm still here looking forward to the post where I tell you all Abby's IV is coming out.  :)

Tears

"Relieve the troubles of my heart and free me from my anguish."  Psalm 25:17 (NIV) 
 
Today, I want to cry.  I wish the tears would just come and yet they won't. 

I read a headline describing the Japanese people using the term "disaster weary".  I am in no way comparing my situation to theirs, but in the context of my own circumstance, I understand the sentiment.  I am disaster weary today.  So very tired of illness. 

Nothing is different.  Abby isn't any sicker.  Emily had her neurology appointment and I feel optimistic about the changes we decided to make.  There isn't any good reason to wish that I could just sit down and let go for a bit, but I do.  I need to.  I even found myself looking at the sky wishing for rain.  Let the heavens shed the tears that aren't there for me.

All that we've been through the last year few months hit me like a ton of bricks today. It began last night after I got up to try to make Abby comfortable for the kazillionth time. I couldn't fall back to sleep, so I thought about it all. I try very hard to not wish it away. I strive to accept what God allows because I know His thoughts are above my own. But I'm human and I want healthy, happy children.

I gently ran my hands over Abby's distended, tender belly today and wished some of the hurt I feel for her could leave my heart, even if only for a short time.  I change the dressing on her central line and see the hole that opens her chest to dangers of the outside world and can still feel the weight of the pen in my hand as I pressed it to paper to consent to it.  I ask her if she's afraid and she consistently answers "yeah".  I'm afraid too, but as I look into her eyes I want her to see hope shining back from mine.  I can't allow her to look at me and see the tears I feel.  If the first tear would actually fall, maybe they wouldn't stop.  Maybe I just can't right now, even if I want to. 

Oh how I desire in the depths of my soul for my girls to be alright.  I wish Emily never knew the fear or confusion of a seizure.  I can't stand that Abby has endured months of pain as we've worked to save her life.  I grieve for the uncertainty of their futures and the pain they will likely know.  I ache because sometimes it feels like I lose them one piece at a time until nothing is left.

As I'm writing, the words of my very first blog are coming to mind:

Their lives have asked me to bear witness to suffering, to do what I can to change it, and when I can't, to hold their hand. They have asked me without words to speak for them. They have asked me to feed and dress them when they can't. To patiently wait for them to do what they can for themselves. To encourage them when they try. They ask me to believe in them when no one else does. To carry them through, and to walk beside. They have asked me to be Christ-like. They have reminded me of what He did for me.

When the time is right, I'm sure I will have the tears and the words to help ease some of this hurt.  Tonight, I have this blog and a prayer.

Dear Jesus,
Thank you for loving me and my girls.  Thank you for consistently showing me that you are with me.  Help me to lay all of this down when I need to, and give me your strength to walk the path before me.  Give me the grace to be what I am not.  Above all, help me to honor you with my life.  I pray you grant us all rest and peace and when I need them, tears.

Monday, Monday

A new week.  Thank God!  I know most people aren't lovin' all over Monday's, but I could really use a new week. 

Jeff went back to NC yesterday.  This is it, the final count down.  He has two more trips home before the one he makes to bring us back with him.  This visit our conversations were filled with Abigail and real estate.  Where to live there and what to do with our house here?  Of course, Abby is the wild card in all of this.  We absolutely can not move until Abby is stable. 

Get your Abby fix here:
Abby looks great!  She's gained a little weight, her color's good.  Her temperature is reasonable most of the time.  Our biggest problem is exactly what our problem was 8 weeks ago when she got sick.  Her belly does not work very well.  We changed her formula this week and her residuals are down.  I think that's good, but her tummy seems puffier.  The new formula is heavier and doesn't come back the way the old one did.  I'll be glad to see the doctor this week and see what he thinks. 



I love her wild bed head <3

I'm working on raising the feeding rate a little.  This is extremely important.  We have to make progress here.  Abby looks so good because she is receiving a huge amount of IV support.  They have doubled the lipids and added a lot of calories and nutrition in the TPN in the last few weeks.  The problem with that is that we are going in the wrong direction.  She's digesting a little less than she was and getting more through the IV. 

I didn't think there was anything wrong with that, but the doctors are concerned because of the dextrose content of the IV.  It's 70%; if you compare that to a normal IV of 5% dextrose, it's easy to see why it's a problem.  All that sugar puts her at greater risk for infections.  Bacteria apparently love high sugar and central lines?  Not so fun.   We need to move her off of it as soon as humanly possible. 

It's frustrating because she looks pretty good.  I have to consciously remind myself that she's still sick.  I just want all of this to be over.  I want my life back.  I want my girl back in school.  I want this hard, exhausting year to come to an end.  I want to start again. 

OK, toddler tantrum over (for now). 

A little bit of Emily in your life?
My sweet Emily.  She just loved having Daddy home for the weekend.  She was so cute sitting at the computer with him looking for houses in NC.  She has definite ideas about what works and what doesn't.  She is the most excited out of all my girls about moving.  I can't wait to see how she handles the reality of it. 

Emily very excited about the fruit basket and Daddy

She's had many, many seizures over the last few weeks.  She needs a neurology appointment, but I don't actually want to talk about any more problems. I know I have to just deal with it, but ugh.

She starts FCAT (Florida standardized testing) today.  She uses special computer software to read, which is not allowable on FCAT.  We have been in litigation for 4 years with the state of Fl. trying to get them to properly accommodate her.  They still refuse, even though it violates Federal Law (they were cited for it, but I'm not sure what good that did).  Emily will sit through a week of tests she has no hope of passing because she can't read from the booklet.  It frustrates me.  Actually, no, that's way too nice.  It makes me mad.  Education is hard enough without so much adversity.  Assistive Technology and standardized testing do not work well together.  I will send her to school everyday this week absolutely hating that I'm putting her in a position that she can not possibly succeed in. 

~Hannah~

Gorgeous Hannah had prom this weekend.  After mad dashes and a last minute dress change she looked beautiful.  This is why we stayed here.  These were the moments I didn't want her to miss and the ones I didn't want to miss seeing.  I'm thankful for the opportunity for something normal and fun.  It was a nice break from medical-land.

                                                    

Sarah Elizabeth:

There's not much new with Sarah.  She's the same funny, smart kid she's always been.  She's the comic relief around here.  She's moving right along with the resiliency most children possess.  I need to find a way to spend more time with her; for her, and because I miss her.  Even when she's here everyday and I get to be her mom, I don't want my time with her to pass by me because the twins have such significant needs.  As Hannah is graduating in June, I am very aware of how quickly it goes by. :)

All in all, we continue to hang in there.  I have more to do than I know what to do with, but that's nothing new either.  I'm beginning my week with an expectant heart.  I'm praying for progress for Abby, clarity for what to do about a house in NC and the one here.  I'm praying, as always, that His will be done. 

Happy Monday!

Random thoughts and Abby update

I just finished putting Abby and Emily to bed.  I am slowly settling in to our new routine.  It still takes me an hour to get all of Abby's stuff together, but I'm not as overwhelmed by it as I was in the beginning. 

 Sleeping Beauties!!

Abby's doing alright.  She struggles everyday with nausea and it's always a numbers game to be sure that she gets enough fluids in, but she is definitely happier here.  Being with family heals the heart; all of ours. She started therapies this week (PT, OT, Speech) to help regain some strength.

I am regaining some strength too.  I get to snuggle-buggle-huggle (cush-word) with my Emily.  She needs her Mama home every day.  She's a mama girl for sure, thankfully, I'm an Emily girl.  I just love being here with my kids.  I'm starting to get it together as much as I ever did, although I'll admit it was much harder than I expected. 

~The laundry did not get the memo that I am very busy now.  Come to think of it, I don't think anything or anyone around here got that memo.
Actually, my church did.  Despite my repeated proclamations of being fine, they extended the meal deliveries for a while longer.  It has been very helpful, to say the least.  As hard as it is to be on the receiving end of so much extra help and love when I'd rather be the one helping and loving, I'm grateful for my wonderful church family. 

Yummy!!

~Jeff and I had the opportunity to attend church this week.  I have missed it more than anything else in this situation.  It is such a source of strength and renewal.  Beyond teaching and molding, it supports and nurtures.  If someone is reading this without a good home church, I pray you find one.  There is nothing else that can fill  the place in your life where the Lord and His body of believers should be. 

~Abby saw the Dr. today.  I love her doctors.  I know they are doing everything they can to help her and that is an unimaginable comfort.  She's doing slightly better as far as residuals go, but not enough to increase her feedings.  We have decided to try yet another plan.  We're changing her formula again.  The new one is a more elemental formula without the milk bases.  She has never had milk-based products in her life, so I think that has a big part to do with her lack of digestion.  I also started her on probiotics and some digestive enzymes from the health food store.  I also chose to replace the 20cc water flushes with carrot/celery juice.  I feel strongly about giving her some "live" food.  I can't stand everything going in her being processed and artificial.  Someone should come up with an organic, non-milk based, healthy (but high in calorie) formula.  Any takers?

~She's been running a low grade temp the last few days which had her Dr. worried about a central line infection, but besides the fever, she looks great.  We did blood cultures today, but I'm sure there's nothing there.  She looks way too good for a big infection to be brewing.  We're watching her closely though.  Her Dr. reminded me not to ignore any changes in her right now because she's still so fragile.  I probably needed to hear that because I'm ready for her to be well and done with all of this.  The temp didn't concern me in the slightest.  It still doesn't.  She just needs more fluids than her little belly can handle.  I hope we're finally on the right track with the changes we're making now. 

~Hannah has prom this weekend.  It's senior week at her school too.  How do I have a senior in High School?  Wasn't I just a senior yesterday?

~Um, no.  I had a birthday last week to remind me that I am not a high school girl anymore.  This is my birthday present.  I LOVE it, but I feel a little old getting so excited about a coffee pot!  Who am I kidding?  I love my coffee. 

~My parents bought this Jelly Bean machine for us while Abby was in the hospital.  I've kept a stash of change nearby to get into the candy.  It's really cute and kind-of fun.  I bought replacement jelly beans today to refill the machine, then when I couldn't get the top off, it occurred to me...just eat them right out of the bag, girl.  It is better to make them harder for the kids to get quickly, but really, do I need to fight for my jelly beans?

~Writing when so much is going on is extremely difficult for me.  Everyday is so different. The words go in all different directions in my head.  I'm sure this does not come as a surprise to anyone who's stuck with this post all the way down here.

~Emily is not sleeping well tonight.  I've been in there 1/2 dozen times since I started this post, further contributing to the scatter.

~God is good all the time.

~Bible verse I love and a good way to end:
"Dear children, let us not love with words or speech but with actions and in truth."  1 John 3:18