Clapping!

Skills

First - Praise God that Kiersyn appears to be improving. We are using Carafate (her magic medicine) on an as-need basis in an attempt to eventually wean. Though, when and if that can happen could be a long way off. We are also attempting to transition from her elemental, amino acid based formula to a soy formula. It has only been a couple days but so far, she has not had a terrible reaction to it. She is spitting up less and drooling less. Both indicate that her reflux may be improving. Infants with severe reflux often produce excess saliva to help neutralize the acid. Please continue to pray that we are slowly seeing signs that she is on the way to outgrowing reflux.

Also, her Steri-Strips came off and you can barely even tell she had surgery! There is a tiny little line where you can see the incision was but I think her scar will barely be noticeable.

On a different note ....
Kiersyn's newest skills.

Locomotion:
She is amazingly accurate at rolling. She will look, assess where she wants to go, turn her body in the right direction, roll a few times, re-assess, rotate if needed and roll again. She can get anywhere she wants to go doing this. However, she does rock on her hands and knees occasionally. So maybe she is slightly interested in crawling. She also stands holding on to things and tries to pull herself up but we don't have anything the right height for that. Which is fortunate since the child loses her mind if she bumps her head.


Voice:
She says Dada and Da-ad non stop. But even BETTER she has started seeing how loud she can scream/squeal in the highest pitch audible to human ears. It is precious and not annoying. Ever. At least, that's what I keep telling myself.

Dexterity:
She's gotten really good at manipulating (read: grabbing, yanking, tearing, and generally destroying) objects with her hands.
Major developments: She figured out how to undo simple velcro. That's right. That means you have approximately .2 seconds to get pants on her before she rips the diaper off.
She also learned to clap! But, of course, she refuses to when you ask her to. Video coming whenever I can catch her doing it.

Curiosity:
She's all about exploring her world and grabbing anything within reach to examine.
Major developments: Apparently this also means putting her hands IN anything that looks like a large enough opening. In case you were wondering, the dumb attach-another-toy-here ring pictured below IS NOT large enough for her to stick her arm in it and easily remove it again. That's right. Arm-stuck-in-ring-angry-baby-chaos did indeed ensue.

And lastly, right before we lowered the mattress, she developed the very cute habit of checking to see who was coming to get her from the crib.

Home Videos

Note: The music can be turned off at the bottom of the page in order to hear the videos better!

Sorry, I know I ask her "what she's doing" way too much - just encouraging metacognition!!

With Love, From Lexie

Poor baby K still has a tummy bug. She isn't throwing up anymore so at least she is improving.
BUT the GOOD news is that Kiersyn has been sleeping like a normal baby for an entire WEEK!!! By normal I mean in a non-elevated crib, not on a wedge or an incline and without being strapped in, or velcroed down! This is a huge step for baby K! Since Kiersyn has never had the ability to move around freely in her sleep or while going to sleep, it took a little bit of adjustment but she is doing SO well. Of course in our world that means still waking up multiple times a night... just not screaming during the night or having flares during the day.
We have let Kiersyn stay on Carafate (her "feel good" medicine) and there is a large part of me that is very concerned she is only able to sleep this way because of the medicine that she will have to stop taking soon. What I'm realizing about this journey is that I can't focus on the future what-ifs. For now, Kiersyn is sleeping wild and free - and we're celebrating!
We're also celebrating the RAIN!
Yes. That is my husband making a "rain angel" in the backyard.


Not much else going on around here besides
Lex and K becoming pals - notice the theme of their relationship...

Reflecting on 1 Samuel

This isn’t an update on our lives or a “published to Facebook post” and is me organizing some thoughts on Bible reading I’ve been doing – so if you’re randomly stumbling upon it, feel free to read on but it wasn’t written or edited with the anticipation of much public viewing!

1^st Samuel 2:27 – 3:18 & 4:12-25 – God says terrible things are going to happen to the house of Eli because his sons were wicked. He says all the descendants will either be cut off from his altar, have their eyes blinded with tears, have their hearts grieved, and die in the prime of life. When Eli hears all of this is about to happen he says  “He is the LORD; let him do what is good in his eyes.”  Eli’s sons die, his daughter in law dies giving birth and he dies by falling and breaking his neck (after serving the Lord for 40 years) when he hears his sons are dead and the ark of God has been captured  (while sitting at the road watching for the ark because “his heart feared for [it]”).

-           I mean really, honestly? My first reaction was “Are you kidding me. ” But then there’s what Eli said… “He is the LORD; let him do what is good in his eyes.” 

-          When I hear of innocent, faithful people dying painful untimely deaths – I almost always equate it with evil. Misfortune in the very least. But here…the deaths were the work of God…AFTER he had PROMISED that the family would “minister before Him forever”. FURTHERMORE Eli STILL assumes it is good in the eyes of the Lord.

-          Eli’s daughter dies from labor pains …  she lives long enough to know it is a boy which means it is likely she died shortly after holding her child for the first time. The reality here is that if this story was written with God as an anonymous character, I would likely judge God to be a ruthless, uncaring, extremely evil person.  I struggle with that fact.

-          I have rarely considered that what seems “good” (as in, the opposite of evil) to me might be vastly different than what God considers good. I’ve heard people say God sometimes allows evil to accomplish good… but now I’m somewhat convinced that some things that seem evil to me simply don’t to God.  Now, there are things that He has said are plainly evil – idolatry, adultery, that whole list… but since God is not speaking to us the way he did to Eli – how do we know when things that happen to us, or to those around us are good or evil if we cannot judge by appearance or how they make us feel?

-          It seems it must be true that being merciful to the house of Eli would somehow have brought less glory to God than to take them all out. This has huge impact in my world if I am applying this passage to my own life. Events that initially seem inherently evil  – I must consider that they could be part of a plan God has that I simply am not able to see or understand.

-          Most of all I want to have a faith like Eli. Perhaps the true cost of following Christ and the reason we are reminded time and again that we will have sorrow in this life is highlighted in this passage.  I must grapple with the fact that what happens, even if it is tragic – and EVEN IF IT IS CAUSED BY THE LORD,  is for the good of those who love Him – not necessarily for ME or for RIGHT NOW but for the kingdom of God as a whole… in the end.

Sinking in the Shade

Luckily they had a special marker to locate her cyst...

 Kiersyn’s surgery is somewhat of a blur.  It was scheduled for 9:15 and we ended up being more than an hour later which was frustrating for Kiersyn’s sake since she hadn’t eaten since 4:15am. We spent that hour trying to keep her from realizing she was hungry. In between surgeries the doctor came and talked to us and marked her cyst which I thought was kind of funny. I know it’s standard practice but still. They finally came and took her – we didn’t get to go back with her this time which made it more difficult to just watch them walk away with her. They took us to our “private waiting room” which is was a tiny 6x6 room with two chairs and no window that would make any sane person go crazy. We left our things and waited in the main lobby with my parents who I can’t thank enough for being there. In an hour or so the doctor came and talked to us and a few minutes later we got to see her in recovery. For what I’m sure is a combination of many reasons, Kiersyn does not wake up well from anesthesia. We (being Danley and I + the nurses) spent awhile trying to calm her down. They are only supposed to have clear fluids in recovery but in an act of compassion (or maybe the crying was just driving her nuts) one of the nurses closed the curtains and told us to go ahead and try feeding her . Of course it didn’t help her calm down but I appreciated the gesture. Anyway, K finally slept in the car on the way home. She had a fussy day but was back to normal Saturday. She will have Steri-strips over her stitches for a couple of weeks and a small scar. Thank the Lord it’s over.

Waking up

Just to make things interesting on Sunday, we ended up in the ER. (Warning: baby poo talk ahead) The Codeine Kiersyn was on after surgery caused major constipation problems for the poor child who, after screaming for an hour and exhausting herself to the point of passing out on the floor, needed some intervention.  It was a very long day. Then yesterday she woke up with the opposite problem and projectile vomiting. Not 100% sure what’s going on but not. Fun. for anyone.

In other news, my mom had another procedure on her back yesterday. Please pray for healing and pain relief. Also, her sister - my Aunt Tonya, is in the hospital with an infection in her bloodstream. They had to operate on her hand on try to get the worst of the infection out. It stills seems like our family is taking one hit after another. We appreciate your prayers.

I’ll leave you with the words of a song I was immeasurably blessed by this morning – I pray you are too.

Gratitude - Nichole Nordeman

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy down
Surely You can see that we are thirsty and afraid
But maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

Daily bread, give us daily bread
Bless our bodies, keep our children fed
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofs
Let us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

We'll give thanks to You
With gratitude
A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead
And if we never taste that bread

Oh, the differences that often are between
What we want and what we really need

So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case  

We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace

But Jesus?

Would You?

Please . . .

Good News, Bad News

 First of all, I want to thank you all for the overwhelming outpouring of love after last week's post. I received e-mails and messages from people I had not spoken with in years and people I barely know. We have been overwhelmed with support, love and prayers for baby K. Thank you so much and please keep praying.
Just to catch you up - we spent the majority of last week in San Luis Pass - it was wonderful to relax a little and get away. We were able to give Kiersyn her "feel good" medicine - Carafate, so she felt good and did well. Praise God for that.
Her biopsies came back on Tuesday and were all normal. The doctor reiterated how loose her Lower Esophageal Sphincter was at the time of endoscopy and said "Look, I'm not going to kid you, it's going to be a long few years". Not exactly what you want to hear from your child's doctor. She also said to "just stay away" from solid foods. I've been so frustrated by the outcome. I truly wanted something to turn up that would be treatable and a quick fix for K. Yet here we are back at the beginning with what we've always known - she's a little GERDling. After further discussion, Kiersyn's GI doctor has also recommended that we see an Endocrinologist for some lab work since her weight does not correlate with her intake and she has had issues with fluid retention. I don't know when that will be since Kiersyn's surgery to remove the dermoid cyst next to her eye is this Friday.
The doctor did however, recommend trying peas next if we decided to try anything new. Remarkably - it's been a stunning success and has helped with her insane sleeping issues. The two days she had peas she went from waking up 10-12 times a night and eating once or twice to waking up only one time and not eating at all. Last night, thinking how well this was all going, I decided to try one more bite of carrots again. Epic failure. We were right back to the same routine of waking up every few minutes and fussing all morning. It just baffles me. I believe she is allergic/intolerant to many things and we've happened to stumble on one that doesn't cause a reaction or a reflux flare. All we know for sure is that milk,carrots, sweet potatoes, rice cereal and oatmeal are all off limits. It does seem hopeful that we have found SOMETHING she can tolerate and we continue to pray that we will find more.
I am amazed at how quickly Kiersyn's issues and all the terrible things that come with GERD have become a part of our "normal". I've been through many stages with this monster of a disease - feeling like perhaps it wasn't really a problem, irritated that my child cried SO much and ALL the time (even angry at her at times), worrying about every small detail, spending 24/7 researching and fighting it, thinking "just have to make it to 6 months" (when minor reflux is supposed to get better), and I feel like I am finally just accepting that this is it. This is not what I imagined when I got pregnant and dreamed about the perfect, happy baby I would bring home. There wasn't anything in the baby books about how to remain calm and peaceful to comfort your 6 month old who still screams much of the time or how to deal with it, look alive and be alert through it when you're getting up as much as 12 times a night. But this is what we've been handed and I can wallow in it or I can breathe deep of Christ's compassion and learn how to appreciate the sacred moments of my child's infancy in the midst of pain and difficulty. That's pretty much what all of life is anyway. Finding the sacred moments in the midst of chaos. Or maybe it's the chaos that's sacred. Clearly God has much to show us.
In any event, Kiersyn remains on Carafate until we get past Friday's surgery in an attempt to make recovery as easy and comfortable as possible. It is truly our magic medicine and she is the happiest, sweetest, smilingest baby in the world as long as she's on it. Everything seems so simple and fun when she feels this good. I enjoy every moment of the day, don't want to put her down for naps, and spend all day trying to make her laugh. Good days are so very precious. I hate that we can not keep her on it and completely pain free forever. For now, we are enjoying the rest of the week until the big day on Friday. One hurdle at a time. We do not know what time Kiersyn's surgery will be on Friday but please keep her and the doctors in your prayers on the morning of the 9th.

Lastly,
Our thoughts and prayers are with all those affected by the Austin-area fires.
This drought has lasted far too long.
We continue to pray for rain.