not what I had in mind

We are 8 days post op.

We have been home 2 days.

And we are potty training.  What??  This was definity NOT in my game plan, but Kemeri's incision is not looking good down towards her bum.  I have kept her as dry as I can by changing her diaper frequently, but even a dry diaper traps in her natural moisture, & about an inch of her incision sight is not looking good.  After speaking with the nurse, & the nurse even having trouble with a good solution, I decided to "temporarily" put Miss Thing in big girl undies until I heard back from the nurse about any possible course of action.  McGyver mom that I am, I cut off the back part of a pull-up to put inside the undies to avoid constant clean-ups on aisle 6 to catch any accidents. 

This whole thing is significant for a couple of reasons.  First of all, this mama doesn't just jump into potty training on a whim.  I mean, we need to mentally prepare, stock up on undies (b/c I don't use pull-ups...I just happened to have some from when we went to Ethiopia, but didn't need them), prepare the potty prizes (read: M & M's), & just try to be strategic about this big step.

Second, & most important, is that we really have no idea what Kemeri's bowel/bladder functioning is.  Some children with spina bifida have trouble with continence, so they have to develop a plan to manage it.  Honestly, I'm just not sure I was mentally ready to delve into this for fear of finding out this is yet another hurdle our sweet girl has to overcome.  You know, ignorance is bliss?

I heard back from the nurse with a few possible strategies to keep moisture off the incision, but guess what?  After we got going this morning, Kemeri is doing so well that we ditched the partial pull-up.  Even more exciting is that her incision is already looking better!!!!  How awesome is that!?!  AND she thinks big girl panties are just fabulous.

Please pray that this continues to go well.  What an amazing blessing it would be for all systems to be working!!!  And I just have to share how cool God is...He truly is in every detail.  A friend stopped by to drop off a form for a camp Kade is going to, & she brought by a stuffed animal & some M & M's for Kemeri.  Just what we needed!!  We are potty training, baby!!! :o)

we are outta here

Yesterday was a super busy day for Miss Thing.  They clamped off her lumbar drain & began the processing of sitting her up.  By lunch time, she was doing great & up far enough to have the tray in front of her.  What a treat to not eat lying down!

As you can imagine, she was pretty tired & a bit ouchie from this hard work, so she had some tylenol & a good nap.  After some more sitting up, we did a sponge bath, got on some new jammies, & tried out the legs.  When we first stood her up, she was a little wobbly so we just let her lean on me for a few minutes.  Then we asked her to take a couple steps, & she looked good!  By now, we were by the door in her room to the hallway.  When we opened the door, she took my hand & we were off!!  She walked the whole length of the hallway & was having the time of her life.  I think I would have cried except that I was smiling too much.

Her neurosurgeon was here first thing this morning & very pleased with her accomplishments.  They will be removing the lumbar drain & her IV soon & then WE GET TO GO HOME!!!!  Praising God for the wonderful people He has put in our path this week to help our little girl & for the determination He's given her to overcome.

Blast from the Past...Be Nice

I got a text from my lovely oldest daughter, Kaelee, that said, "You're gonna cry when you see FB".

Oh, I wanted to cry alright.  Today is our 19th wedding anniversary, & *somebody* was digging in the closet.  Since it's already tagged all over FB, I figured I might as well share the love here, too. No doggin' me on the hair.



Ok, seriously, once you get past the initial shock of the hair, my precious daughter had this to say:

Happy 19th Anniversary to my mom and dad, Dardi and Joe!! So blessed to have amazing role models that show us the meaning of love and family on a daily basis! ♥

That, right there, is worth a thousand bad hair pictures.  We have never been or ever will be perfect, but if at the end of our days we are remembered for loving each other, loving our family, & loving others, we will be the ones blessed.

And just for redemption, a more recent picture. ;o)

Happy Anniversary, Joe...I love you more today than yesterday, & I look forward to our tomorrows.

Monday Musings (so original, I know)

Don't judge.  I blame my lack of originality to hospital food & lack of sleep.  Moving on.

SOOOOOO thankful that we had a more peaceful time of it last night.  Whew!! We totally needed that!

I also need to share that this little girlie is a rock star.  Seriously.  She takes her meds (even the yucky ones) better than most teens (the nurses have said so!).  She has remained on her back (thank you, Lord) with very little resilience.  She is starting to show her sweet (& sometimes ornery) self to the nurses, which is fun.

I am in awe of her strength, her fight, her spicy, her silly, her forgiveness (she has had to endure a lot of painful, scary stuff, including a new IV port today that took 3 sticks), & so much more.  And let me just tell you that today when Daddy came to visit, she SOBBED when he left...and I rejoiced over every single tear.  No, I'm not a sicko...I'm a mommy that is over the moon to see that this sweet new daughter of ours is showing signs of KNOWING that she's ours.  She belongs.  She is part of a family that loves her, so when she is crying when Daddy & the kids leave, I rejoice.  She has had surgery to fix her spine, but God is mending her heart.

Here's a few of my favorite pictures from the last few days...some are from the hospital, & some are pics that Joe or the kids have sent me of things they are doing.  These are the moments I am grateful for technology to keep me in the loop.



Kendi was so happy to see "Kemmy Aaaa-gail" as she calls her.

Kemmy was getting so frustrated the first day some of the kids came to visit b/c she couldn't sit with them.  On Kendi's second visit, we plunked her down in the crib with Kemmy.  I just love these two munchkins.  Kemmy was working on her lunch, & as soon as Kendi sat down, she immediately shared. *sniff* And then Kendi leaned in for some "lubby-dubbies".

Kemeri has put her own flare on flat bed rest.  She believes you can still be lady-like & rock your accessories.

I am blessed to know that my family is loving on each other in my absence.  We will be glad to get home & join in the fun!  Right now, the plan is to remove Kemeri's lumbar drain tomorrow & begin getting her upright.  If all goes well, she will be allowed to move around to make sure there is no major pain or leaking from the wound.  Hoping Wednesday might be the day we get to bust on outta here!

This is Today

Yesterday was good...until it went bad.  Very bad.  We have a little girl that went from being blissfully ignorant to her surroundings thanks to morphine to having a very aware, very anxious little girl afraid of what might happen if she shut her eyes to sleep.

We have a little girl that did not react well to some medicine that was supposed to help her relax.  It backfired, & it was not good.  Like trying to climb out of her crib when she's supposed to be on flat bed rest not good.  Like screaming in fits & jumping at Mommy's touch not good.  Like ripping off clothes & ripping out monitors not good.  Like not succombing to complete exhaustion from it all until 4 a.m. not good.

She slept until 11:30.  Mommy only made it until 7:00.  This mommy on 3 hours of sleep is also not good.

I wish like crazy that I could say that I remained in a positive, thankful frame of mind.  I wish I could also say that I remained composed & patient, constantly trying new things to help remedy the situation.  I wish I could say I walk this road of motherhood gracefully in all circumstances.

I can't.  I was tired, frustrated for being frustrated, wanting just to be at home in my bed instead of trying to get comfortable on this brick I have sheets & a pillow on while trying to tune out the people & noises of the hospital.  I thought that if I heard "Moooommmmm" yelled in the dark one more time, I might just jump straight out of my skin.

But then my inner mommy musters up its gumption when the question is posed by a nurse, "Did you know she was going to have these needs?"  There were a few underlying inferences in that question, none of which I liked so much.

Yes, we knew.  No, we were not delusional thinking that it wouldn't be any big deal or that we would get her home & the needs would magically disappear.  While we hoped for the best, we also knew the probability that she would need medical intervention.  So, yes, we knew, & we said she's ours.  She's beautiful, spunky, silly, & we love her.  She happens to have some medical special needs.  Is this hard?  You'd better believe it's hard.

It's called motherhood.  I didn't go into it expecting perfection in any form from my children, so when I feel I have fallen way short of Mother of the Year, I know that His grace is new & that I cannot hold myself to some unattainable bar of perfection, either.  Motherhood requires me to constantly lean on Him & focus more on the beautiful moments that make being a mom totally worthwhile.  And sometimes it takes a snarky type of remark to remind me just how fiercely I feel about motherhood, even on 3 hours of sleep.

A New Day

Rest & sleep is a beautiful thing.  I mentioned yesterday that we had a good system going...a balance between pain medicine & cuddles with Mommy in the crib that seemed to be making for a peaceful little one.  KiKi got a shot of us when the family came to visit:  A) for the memory books & B) for proof that Mommy really has been climbing on up in that crib with baby girl.  We managed to get little glimpses of smiles yesterday, but for the most part, she was pretty solemn.  At least we both got some much needed rest.

Right before bed last night, I asked our nurse if Kemeri would have the IV for the duration of our stay.  I have been bummed for her b/c she's really good with her little hand, but having the IV on her writing hand takes out coloring, feeding herself, etc.  Unfortunately, the answer was not what I wanted to hear...the IV is in for the duration.  Ugh.

Well, Lil Miss must have been tuned into that conversation b/c guess who managed to remove her IV in the middle of the night?  I woke up when Zach (our nurse) came in b/c I could tell he was doing more than the usual checks, & he said, "I have good news & bad news.  The bad news is, her IV is out.  The good news is, her hand is free b/c the IV in her leg is still viable."  Kemeri looked pretty pleased with herself.

I am completely amazed at how things have gone today.  She has had nothing more than tylenol for pain, she is eating even though she is still required to be flat, she is content to play with her pretty bracelets that her sibs picked out for her, & she's just overall getting back to being my girl!!!!  Yay God!!!!  The nurses have been spending extra time in our room b/c I think they are enjoying seeing her personality coming out more & more.  What a difference a day makes!!

Bracelets...check.  Cell phone...check.  Minnie Mouse...check.  Doodle Pad...check.



Thank you for all the continued prayers & encouragement!  Now, I must go b/c Miss Kemeri has informed me she needs to chat on her cell phone again. ;o)

Kemeri Update

It was a looong day yesterday, & an even longer night.  The hardest part is that she's hurting, but I can't hold her.  She was supposed to be flat on her stomach for 24 hours, but Kemeri made it very clear within the first hour of being in her hospital room that that was not happening.  I don't know if it scared her, was uncomfortable, or what but she kicked, thrashed, screamed & literally tried to pull herself out of the crib.  So guess what?  She won.  It was determined that the stress of trying to restrain her wasn't good for anybody, so they let her be on her side as long as her spine remains straight.

She pretty much looks like she's been to war in this picture.  Somehow she wrestled her way out of her jammies, her hair is matted down with sweat, she has pressure ulcers on her face from being face down for so long during surgery...poor baby.  I already mentioned this on FB, but it's worth sharing again...One of the hardest and at the same time sweetest moments yesterday was when she began crying out for Kendi.  Oh my heart, I think she fully expected her partner in crime to kick butt, take names, & bust her right on out of this place.

Finally in the wee hours of the morning, we seem to have found a system for her pain management.  Part of that included having Mommy close, so somehow I was able to curl my body around hers in the crib without pinching any wires or getting her out of good position (I know, right?).  I think this was good for both of us.

This morning has been much more peaceful.  It's also amazing what the light of day, clean sheets & fresh jammies can do.  Hoping for much peace, rest, & healing for our punkin today.