This is an entirely different kind of post. So before I jump into it here's the latest in our world for those who are looking for an update.
Bad News-
I am one month post sinus surgery and at my last appointment the Dr. confirmed that there is in fact infection in my left sinuses. Again. Antibiotic round 6? 7? I don't even know anymore. I can not tell you how frustrating this is.
Good News-
Kiersyn is doing wonderfully. We are still working on weaning off her medicine but she is EATING. Like a normal baby. Still have no teeth and we are still a little cautious but really. Eating. Solids. I didn't think it would happen this soon. I am so very happy for my precious little one to be experiencing normalcy I could cry. She is also SLEEPING. In a couple of weeks we have gone from more than 5 wakings in a night to sleeping 11 and 12 hours straight. It has only been a few nights and it may not last forever but we are getting closer and closer to what Dr. Sears calls "walking away from reflux".
The rest of the post is dedicated to my struggles with parenting over the past few months.
I have always been independent. And I suppose in some ways I have always been about resisting the mainstream. I don't mean this in a "being a Christian puts me at odds with the world" kind of way. I mean it in a ..."my convictions sometimes lead me away from mainstream Christianity" way. The moment I became a parent, this truth became even more alienating. There is a way of parenting it is essentially assumed that a mainstream Christian should follow. It's highlighted in many popular books, often circulated among new mothers in churches today (Think: Babywise). It often includes things like spanking, crying it out, putting baby on a schedule, feeding baby on a schedule...
From day one I have struggled with these issues. My heart just said no. To all of them. I made up my mind I would do things how I thought they should be done but a piece of my heart has felt ashamed. At one point I remember my husband inquiring to a family member about
whether or not it was okay to let a baby cry-it-out and that family
member responding "You have to". It stuck with me because it made me feel sick. As if somehow I am weak for disagreeing with every ounce of my being. As if all these Godly parents around me, even members of my own family are doing things a certain way and I feel convicted not to...surely something is wrong with me.
And then tonight I found (was led to?) a blog
http://sortacrunchy.typepad.com/
It turns out I am not the only one. Not by a long shot. These two women, Laura and Megan, created this blog when their hearts were in the same place I just described: feeling alone, alienated, frustrated and like they needed to keep their parenting beliefs hush-hush. Now, they are working on a book set to come out next spring entitled Spirit-Led Parenting.
So this is where I share my heart.
Tonight I understood for the first time that I am not a weaker mother.
From the SortaCrunchy Blog:
"AJ was fighting a cold last week, and I was up several times
Wednesday night/Thursday morning rocking her.
At one point while I was
rocking her, I felt like God spoke clearly to me that it's about dying to self.
So much of what is spoken to mothers (in secular and Christian
material) is about maintaining and reclaiming yourself after you become a
mother, but we've heard so few suggestions that one worthy response to God entrusting you with this little one is dying to your devotion to yourself.
The perspective we share is not a popular one . . . this hard truth
that the first year should be less about training our babies and more
about allowing ourselves to be trained by Him. And yet we do believe
that if we let Him, God can use that first intense year of baby's life
to train us how to live a life that is fully
surrendered to Him. Mothering with a servanthood approach can and will
squeeze the very last drops of self out of
us. If we yield to it, there is such potential for spiritual growth and
for learning - in the most hands-on, real-life way possible - what it
truly means to be a servant leader. It can be a year of
transformation from which we emerge with a refined and
sharpened perspective, equipped to experience other people, other
relationships, and other situations through the eyes of a servant."
Wow.
and then I read their post about the spiritual dimension of nighttime parenting - in other words, what you both endure and gain when you don't sleep train or use cry it out - and in an instant I accepted the words my heart has been beating to for nearly 10 months - die.
to. self. I am eternally grateful to find that there are so many others who believe
responding every one of the 9-12 times my 8 month old woke up in the
night was not spoiling but serving. My eyes stung with tears, my heart ached and my soul announced
a resounding "Yes Lord"
It. is. ok. to parent how the Spirit leads me and to recognize and acknowledge that is what I am doing. To believe whole-heartedly that spanking and crying it out and scheduling and that book Babywise are not where the Spirit has led me. It is ok to be led towards gentleness. It is ok to not sleep train, not believe in the need for self soothing, scheduling, spanking, and to think spoiling has nothing to do with how often I hold my child. It is ok to immediately respond every time my child cries, to rock her for the simple reason that I enjoy the moment of affection and quiet time together and to believe the need for her to learn to fall asleep on her own as an infant is a culturally created myth. It is ok to be different. The Spirit does not lead us all on the same path. But the Spirit does lead. And I must follow.
With this realization comes understanding that I do not have to hide or apologize for how I am raising my daughter. This part is new and I'm still trying to come to terms with it.
In any event,
I urge you, I beg you, if you are a Chritian parent or will soon become one or might someday become one or are one right nowand you have questioned things of the "mainstream Christian parenting" sort... like spanking, crying it out, sleep training, vaccinating OR you have considered or wondered about co-sleeping, natural parenting, organic living, creation care ...
PLEASE
check out the blog.
I have been reading for hours now. I have laughed, cried, nodded and prayed my way through it...
Read a little. You might be surprised where the Spirit leads you.
Friday, December 9, 2011
Wednesday, November 30, 2011
Wean week 2 + Videos
Hope everyone had a wonderful Thanksgiving! Kiersyn with her Uncle Skyler |
In Kiersyn news...It seems we have chosen a good time to wean as they have just completely quit making the generic form of her medicine. The generic cost us $10. The name brand is $132 after insurance. Wow. Luckily, Walmart is being amazing and getting leftovers from everywhere they can and letting us pick them up a couple pills at a time as they get them in. BUT she is doing GREAT on her medication wean! We have successfully halved her morning dose. At first she started spitting up a ton again and her sleep was really messed up. She couldn't nap for more than 20 minutes at time BUT it lasted only a few days and it seems everything has calmed down. However, with the changes, she has become very attached to her routine and her crib which led to an absolute meltdown on Thanksgiving. I'm feeling leery of our Christmas travels and how it will all work out. In any event, we are moving even slower than the 6 week recommendation and hopefully that will help with any other complications. Kiersyn is now feeding herself small solids like yogurt melts and cereal puffs AND... for three days in a row now she has had two meals of actual baby food and not had any serious issues with it. !!! Hopefully, one of these days a tooth will show up.
Enjoy the videos!
The first is learning to play peek-a-boo, the second is her checking out her Kiwi Bird from New Zealand (she has an aunt, uncle and cousins there who she will meet for the first time at Christmas!), third is playing with bubbles, fourth is dancing and the last one is my little jumping bean.
Friday, November 18, 2011
A Very Long Day
Kiersyn had a doctor’s appointment. They went ahead
and did the blood work to check her thyroid. It was terrible. The first place
stuck her and couldn’t get a vein so they sent us somewhere else where 3 of us
held her down on a table and they had to dig around trying to find a vein for
what felt like eternity. They never really got a good one and we had to wait
forever for the stupid vial to fill with blood.
It was also the first time I had to address with our pediatrician
that we are not currently continuing with vaccinations. As I feared, she was
unhappy and expressed her disdain. I know it shouldn’t matter but I was pretty
brokenhearted over the judgment I felt by the doctor. It has not been a
decision I have taken lightly, I’ve done the research, weighed the risks and
made the decision I felt I could live with. Isn’t that what we’re all doing as
parents? And so we begin the search for a new pediatrician – one who supports
alternative vaccination schedules, alternative medicine and a patient’s right
to be in control of their own healthcare. Thanks to Dr. Sears Vaccine Friendly list we
have a few options right now. Any DFW mommas out there with a vaccine friendly
doctor not listed there, PLEASE feel free to shoot me a message.
Additionally, we’ve begun to wean Kiersyn off her
medication.
We’re on a 6 week plan to slowly reduce the dosage. I’m
trying to go into this expecting nothing. I know we could make it 5 days or 5
weeks in and have to give up. I know there will be difficult days and nights no
matter what. I don’t know how much I can push through, or how much I can let
her endure to make it to the other side (if that’s a possibility). Prayers for
this process? Please?
This comes at the end of several days of struggling with our
insurance company for a whole lot of money they owe us for Kiersyn’s formula. It
has become so frustrating and exhausting that I am very close to letting go of
it. There’s really no amount of money worth the stress and emotional drain the
fight has become.
It’s been a long few days… in the middle of recovering from
surgery.
Did I tell you Kiersyn hit me in the nose with her head?
That complicated things. I have an appointment Monday for them to check to see
if it’s broken or fractured. They wanted to wait and let any swelling go back
down. Based on the pain. pressure and swelling, I think there’s a chance there’s
a small fracture. Of course not much can be done for that but mourn the fact
that my surgically corrected septum is probably no longer perfectly straight. I
find this kind of funny. Mostly because I figure nothing can get the best of me
if I can laugh at it.
After these past few days making stressful decisions that I
am constantly aware could have lasting effects on my child’s future, I’m just trying
to wrap my mind around the gravity of my job and the magnitude of the work God
can do through a mother.
There are days when motherhood feels like a weight so heavy upon
me that I can’t move from under it. Let me be clear, I do not mean that my daughter makes me feel this way. She is
joy. She is laughter. She is a light burning
bright. But motherhood… the essence
of the mission and the ministry… is. so. much. To think I am raising a person, a human
being. Shaping a soul. Creating a
disciple… That’s a big responsibility. That’s a huge responsibility deeply
rooted in my own relationship with God and I’m struggling with how much my
child’s future depends on my own here-and-now. I mean, I think there are some
things that we are born with. Tendencies, disposition, personality traits… but I
believe most anything can be taught. In many ways, in BIG ways, how Kiersyn
handles difficult situations, how she forms and maintains relationships with
other people, who she becomes and how she influences this world… starts with
something as simple as my attitude in the face of stress.
I just keep asking myself, am I teaching this little soul to
bear fruit by …bearing fruit?
Am I filling her days with Love, Joy, Peace, Patience,
Kindness, Goodness, Faithfulness, Gentleness and Self Control?
It’s just…
I was prepared to mold a child. But I wasn’t prepared for
how much this would mold me.
It’s a strange thing that happens as you parent. You become
more sensitive to the needs of others in everything from decision making to
conversation simply from the habit of putting someone else’s needs first. You
begin to care more about the world around you because you realize it isn’t just
the place you live, it’s the environment in which your child will raise your
grandchildren…
I guess I’m saying…
I knew adults make babies.
But
I never knew how much babies make us adults.
Saturday, November 12, 2011
Post-Op
I will spare you too many details but recovering from
nasal/sinus surgery is gross and uncomfortable. Lots of swelling, bleeding, itchy
internal stitches, inability to breathe or sleep plus nausea from steroids,
antibiotics and pain pills abound. However, I am beginning to feel a bit better
and hopefully it all gets better from here!
With not much else to report, I’ll leave you with some
pictures of the baby girl.
Tuesday, October 25, 2011
Sales, Sinus Surgery and um, some more videos.
Last weekend we stayed with my parents to help with their
garage sale. Let me tell you that my family knows how to do garage sales right
as you can see…
That’s SOME of what we had ready Friday night to put out
Saturday morning! It was crazy but ultimately successful. Kiersyn had fun
helping and learned to wave in the process. Here’s a video to prove it AND a
video to show you how to keep an 8 month old entertained all day at a garage
sale.
Kiersyn has been off of Carafate for awhile now. The first
few days were not fun for anyone and even though she now fights having to do
anything laying down (which makes diaper changes pretty difficult) and has
fussy days here and there, things seem to be evening out. She has gone to a
milk-based formula (no more prescription formula!!) and is a happy girl for the
most part. In fact the baby that screamed non-stop only a short time ago seems somewhat
like a distant nightmare. It is possible that she outgrew a milk allergy around
6 months and it is also possible she is still intolerant as this formula is “partially
hydrolyzed”. I don’t know if we will ever know since it is likely she will
outgrow the problem before she can talk to us about it. Despite these
improvements, she is still having major issues trying to eat solids. All it
takes is 1/3 a jar of the wrong food and we are up with a very angry baby in
the middle of the night. It’s hard to figure out WHAT the “wrong foods” are and
WHY. We don’t know if some foods just irritate her reflux or if it is allergies
or intolerances… it is so frustrating that she can’t just tell us what’s going
on. It is also difficult to keep trying different things knowing we are
constantly taking a chance of her being in pain and us not getting any sleep at
all. It seems consistent that carrots and anything with carrots in it causes problems.
No big deal, just don’t eat carrots right? It’s not like carrots are the number
one ingredient in baby foods right? No, water is. But guess what’s second? That’s
right, carrots. Almost EVERY “Stage 2” baby food available has carrots as a
filler. Pick up a jar of “Tender Beef and Spinach” and read the ingredients: water,
carrots, beef, spinach. Yeah, that’s right. Since I don’t want to spend all day
making a million different purees WITHOUT carrots in them to try just one bite
and then toss, it also seems easier to wait until she can eat finger foods.
Since she has had so little experience with foods, we’re a little behind on
that. We’ve tried to use those Gerber Graduate puffs to teach her the concept of
putting food in her mouth but she consistently hands them to the dog… They look similar to her reflux pills which
may be part of the problem…
In any event, she is on the move! Crawling, pulling up,
standing for .2 seconds at a time, even cruising a little. Luckily the little
chunk isn’t very fast…yet. J
She claps, waves, and says “Dada”, “Uh-oh” and “Whoaa” when she is surprised or
impressed. She is basically brilliant. J
In other news, as many of you know, I have been fighting
chronic sinusitis that has turned into full blown bronchitis and upper
respiratory infections many times over the past 6 months. I saw an ENT a few
weeks ago who stated I would not find relief until I had my deviated septum
repaired. Thinking that was ridiculous, I went to a different ENT for a second
opinion who promptly did a CT scan and even more urgently assured me that I
need surgery. My septum is severely deviated and she actually suggested 5
surgeries (to be done at one time) that involve a lot of bone removal and
reshaping in addition to a balloon sinuplasty. The pain and time involved in
recovering sound really unpleasant and will require a lot of help around the
house and with Kiersyn… I am pretty apprehensive about it and have been putting
off actually scheduling the surgery because of it. However, the thought of
being able to breathe normally again and not being sick every month is
thoroughly appealing and I know it really needs to be done.
Please keep these issues in your prayers and send up one of
thanksgiving for Kiersyn’s continuing improvement.
Here's a couple more videos for good measure :)
Tuesday, October 18, 2011
Monday, October 10, 2011
Tuesday, October 4, 2011
Monday, September 26, 2011
Saturday, September 24, 2011
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.
Monday, September 19, 2011
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!!
Sunday, September 18, 2011
With Love, From Lexie
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!
Not much else going on around here besides
Lex and K becoming pals - notice the theme of their relationship...
Friday, September 16, 2011
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!
1st 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.
Wednesday, September 14, 2011
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.
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 . . .
'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
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 . . .
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
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
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
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
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 . . .
Tuesday, September 6, 2011
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.
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.
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.
Wednesday, August 24, 2011
Psalm 18:28
Kiersyn did pretty well today.
She wasn't allowed any bottles after 4am and only Pedialyte or water until 7. Of course she refused to drink the Pedialyte and would only take a little water. I was afraid she would be starving by the time they took her back but she ended up being fine and only fussing a little before they took us back.
We actually got to carry her back to the procedure room and stay with her while they gave her the anesthesia and she fell asleep. I was thankful for that.
It was quick, maybe 30 minutes. When she was waking up from the anesthesia was the worst part. I could hear her crying and if I stood at the door of our waiting room, I could see her in post op. She was thrashing around and crying and I wasn't allowed to go to her. It was the worst few minutes ever. They're lucky they moved her to recovery when they did because I was coming for her, whether I was "allowed" or not.
She was upset for awhile but by the time we were allowed to leave half an hour later she was pretty much herself again.
She came home and did a lot of lying around and sleeping the rest of the day
Everything looked normal in her stomach and duodenum. Her Lower Esophageal Sphincter or LES was lax and stayed open, which only tells us what we already know - she has GERD.
They took biopsies of her esophagus, stomach and duodenum to look for other digestive issues - bacteria, malabsorption, gastritis, esophagitis, celiac disease etc. We should get the results Friday or Monday.
Thank you everyone for your prayers and encouragement.
Oh, and a funny thing happened tonight.
It rained.
It was short, just a few drops. It was dark and thundering but we went outside and listened and let the sprinkles rain on us. And then just a few minutes later in the midst of the storminess, a tiny part in the clouds opened and the sun shone glaringly bright through the darkness.
Tuesday, August 23, 2011
Send Your Rain
Could you please pray for our family?
Misfortunate has just been unrelenting for a very long time now. We surpassed "one thing after another" a long time ago and I am so worn out.
There are random small things this week - the dog has an allergic reaction, a random food poisoning episode... and then the rest of the summer...
We have had just about every major appliance break. The fridge, the washer, lawn mower, and computer have all given out in the past couple of months. Along with expensive car repairs.
Danley has had random severe back pain that comes and goes and recently, strange heart burn.
I continue to fight a sinus infection that has been through 3 rounds of antibiotics and will. not. give up. The Dr. recommends surgery to correct my deviated septum which I can not even think about right now.
My mom is still struggling with immense amounts of back and leg pain that are preventing her from walking, getting around or basically living life. She is mostly confined to bed and continues to undergo unpleasant procedures and take large quantities of painkillers just to make it through the day.
And then there's Kiersyn.
Kiersyn is 6 months old now. Still spends the vast majority of her time crying, unless she is on one specific medication - Carafate - which is not safe to keep her on long-term. She can not have solid foods without absolute shrieking, screaming and tearing at her stomach all night and spending the next day crying all day. Her reflux seems worse not better and as her Doctor told us at the last appointment "This is a long, hard road." It may get better, it may not. It may go away, it may not. She may be medicated long into her childhood and the hope there is at least she will be able to explain when she is hurting.
Tomorrow morning Kiersyn has an endoscopy to look at the inside of her esophagus, stomach and small intestine - they will also take biopsies of the lining of the esophagus and stomach to check for infection, GI disease and syndromes, see how much damage reflux has caused so far etc.
I am avoiding thinking about exactly what is happening tomorrow but I know it will be very difficult to send my child off with a doctor to be put under.
The hardest part about Kiersyn has been trying to explain to people what we're dealing with. Other reflux moms, who know exactly what it is like and understand the "reflux roller coaster" of good days/weeks vs. bad, terrible days have suggested sharing a diary of a bad day with friends and family to help them know what it is like since most people see her only at her best. I did that today until right before Danley came home from work. This is not a fun read, but if you want to know what a typical day with reflux looks like, here it is:
6 months of this is too much. 6 months more might make me lose my mind. It seems so unfair for such a little girl. It seems like enough is enough. Could you pray that prayer for us?
Kiersyn is scheduled for 10:15 in the morning.
Pray for rain.
6:17am
Kiersyn awakens screaming. She is thrashing. It’s time for her Prevacid. I stay with her and rub her belly, though it does nothing to comfort her. We can not take her out of bed. Picking her up makes her angrier. Danley brings her pill and gives it to her with some water. In a few minutes she settles and falls back asleep. We go back to bed.
7:25am
Kiersyn is awake again. She is stirring and whining but not screaming. Danley gives her a bottle and brings her to me - it is time for him to get ready for work. Sometimes she will sleep a little longer in bed with me, but not today, she is tossing and turning. I take her to her room and change her diaper. It takes several minutes because she is arching and trying to turn her body to the left in an attempt to straighten her esophagus and clear her throat of acid.
8:15am
Since she seems relatively ok, I put her on the floor to play. Within ten minutes she is fussy and then crying. She pushes her face into the ground and screams, throwing her legs against the ground repeatedly. She is not interested in toys, being rocked or bounced.
8:30am
I take her outside to the swing. This is the only thing that calms her when she is having a minor episode. As soon as we begin to swing she begins to calm down. Despite the fact that it is already over 90 degrees and we are both dripping with sweat, she allows me to swing for nearly an hour. During this time her eyes drift open and close several times and when they open, she grimaces.
9:22am
Kiersyn has been completely calm for about 10 minutes so I decide to try and get a shower in. We go inside and I put her in her exersaucer and I jump in the shower. She is quietly playing for about 4 minutes when she lets out a piercing scream. I am out of the shower in 30 seconds, and grab her from the exersaucer where she is throwing her head back and forth and flailing.
9:30am
I try bouncing, back to the swing outside, swaying with her, talking, walking… she will not be comforted. So we sit in the rocking chair and she screams and cries, arches, throws herself back and forth and writhes in pain. Every once in a while she chokes and swallows her reflux. This continues for over an hour. When she is this physical, I struggle to hold her and keep her from hurting one of us – she weighs 20 lbs and is very strong. She grabs and claws at anything within reach. She takes her pacifier for about ten seconds and her eyes roll back in her head in absolute exhaustion. But just as she begins to relax her face contorts, her eyes well up and she shrieks again. This happens 5 more times. I rub her belly, pat her back, sing to her and rock her while she struggles.
10:32am
She suddenly falls very still and takes her pacifier. I lay her down in the crib and she begins to stir – tossing and arching. I press both arms against her chest and stomach. For some reason this pressure helps and she settles. She is asleep.
10:58am
She awakes screaming. I bounce her and swing her until she calms.
11:10am
I sit her on the floor to play. She immediately rolls onto her face and screams into the floor. I get out some books and read to her, she moans, whines and slaps her legs and the book as we read. At least she is distracted enough not to scream.
11:30am
It is time for a bottle – she takes 3 oz and refuses the rest. She has had only 12 oz in 19 hours. Her Dr. says this is because she is smart – she knows drinking more will cause her to reflux.
11:45am – 12:45pm
Danley is home for lunch and turns the TV on. She is distracted by the TV enough to let us eat and take turns keeping her happy.
12:50pm
Danley goes back to work and 5 minutes later Kiersyn refluxes audibly, chokes, gulps for air, swallows repeatedly and bursts into tears. She arches and cries while I try to calm her.
1:20pm
I strap Kiersyn into her harness, still screaming, and Velcro her down in her crib. She is still struggling, tossing, turning, arching and screaming but she is clearly exhausted and her eyes roll back as she tries to sleep but is kept awake by the pain. I put pressure on her chest and offer her pacifier until she finally falls limp and sleeps.
2:30pm
Kiersyn wakes up screaming and arching, I go in and give her the pacifier – she arches a few more times, falls limp and drifts back to sleep for 30 minutes more.
Kiersyn is scheduled for 10:15 in the morning.
Pray for rain.
Wednesday, July 20, 2011
Couple Pictures
Thursday, July 14, 2011
Never Once
I'll skip the science of it and say there are two kinds of allergic reactions - one that happens instantly or at least quickly... the other takes much longer, even up to 2 weeks. Immediate reaction allergies are easy to test for with blood and skin tests. The reactions that take awhile require a different kind of testing involving a patch containing the suspected allergen left on the skin for an extended period of time. Well Kiersyn saw the allergy doctor. He said it sounded like any of her problems that are allergy related sound like long term reactions and he does not test children under 2 for those types of reactions. He went ahead and did skin tests for immediate reactions even though he repeated over and over that it sounded like it would all be negative and that infant allergy tests are unreliable. Everything was indeed negative. We should hear about the blood testing tomorrow but I assume, as does the doctor, that it will all be negative. Additionally, Kiersyn's oxygen saturation levels were pretty low and after talking awhile the doctor also believes she has asthma. Not at all surprising since Danley has the worst asthma I've ever seen and there is a high correlation between reflux and asthma. It is his belief also that the reason she has difficulty swallowing is
I will say this - all her troubles have made me so grateful for the precious days when she doesn't have something major. Days without a reflux flare up, crying, hurting or a scary doctor visit seem like such a gift and such a special moment.
I've been listening to this song on repeat:
Never Once by Matt RedmanStanding on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
I'm so thankful He is walking with us through such a frustrating time.
Never once, no, we never walk alone
Tuesday, July 5, 2011
Surgery Consultation and Swimming!
So the surgeon says Kiersyn's cyst is uncomplicated and wants to wait a month before surgery so she is a little older before anesthesia. I may push it later because she may have to go up to 8 hours without eating before the surgery and she is not capable of that right now. In any event - good news, and for now I'm not even going to think about how she will have to be put under and all of that. :(
Kiersyn continues to be extremely sensitive to ANY changes in her diet. She has reacted poorly to milk, soy, cereal and now we have realized she is actually reacting to the DHA/ARA in her formula. Her prescription formula comes in two forms - one with DHA/ARA and one without - she has had both and until now I didn't realize it was contributing to her "bad" days. I didn't even know it was POSSIBLE for synthetic dha/ara to cause problems. If you formula feed your child or plan to - I strongly urge you to read this article concerning the USDA's call to ban the addition of synthetic DHA/ARA to formulas. We will be seeing a food allergy specialist who treats several disorders than can cause ALL of Kiersyn's symptoms. Though I probably shouldn't put it in writing - this should be the last new doctor we have to visit and one we stick with for a long time...
Danley is at camp this week and we are staying with my parents which means Kiersyn has had time to work on a new skill!
Kiersyn continues to be extremely sensitive to ANY changes in her diet. She has reacted poorly to milk, soy, cereal and now we have realized she is actually reacting to the DHA/ARA in her formula. Her prescription formula comes in two forms - one with DHA/ARA and one without - she has had both and until now I didn't realize it was contributing to her "bad" days. I didn't even know it was POSSIBLE for synthetic dha/ara to cause problems. If you formula feed your child or plan to - I strongly urge you to read this article concerning the USDA's call to ban the addition of synthetic DHA/ARA to formulas. We will be seeing a food allergy specialist who treats several disorders than can cause ALL of Kiersyn's symptoms. Though I probably shouldn't put it in writing - this should be the last new doctor we have to visit and one we stick with for a long time...
Danley is at camp this week and we are staying with my parents which means Kiersyn has had time to work on a new skill!
Labels:
Acid Reflux,
baby GERD,
baby reflux,
dermoid cyst,
GERD,
infant acid reflux,
infant GERD,
infant reflux,
Kiersyn,
Kiersyn Morrow,
Kiersyn Rayne,
reflux,
sandifer syndrome,
sandifer's,
sandifer's syndrome
Thursday, June 30, 2011
Quick Update and New Pictures!
Well it turns out I was wrong. As you read in my last post, after the SimplyThick issues we had to go to putting cereal in Kiersyn's bottles and I thought we had it worked out. Well, Kiersyn continued to react terribly to the cereal. She was downright screaming after every bottle/all day, angry and clawing at anything nearby. I don't know if she has a sensitivity to the cereal too or she is just not ready for anything resembling solids (very possible since her entire digestive system seems to be a little behind). Of course, that means we've had to go to putting NOTHING in her bottles. With her "uncoordinated" swallowing, it's proving to be a difficult adjustment. She has quickly learned how to pull the bottle out of her mouth to swallow when she realizes she has too much formula pooling in her throat - I'm hoping it's a sign she is slowly but surely learning the "right" way to swallow. It's very difficult trying to get her back to a new normal in the midst of VBS... tomorrow is her surgery consultation and Danley leaves for camp in Oklahoma on Sunday. This past week I've been close to losing my mind with feeling like we are back at square one with Kiersyn. She had been doing so well and getting better everyday and then suddenly she has been screaming and crying all the time again. I've been at my wit's end and feeling beyond frustrated doing it by myself with Danley so busy with VBS. Thankfully I've been incredibly blessed b
y my parents who came by and mowed the yard, cleaned the house, bought groceries, folded the laundry and even ironed. I'd probably have gone crazy by now if it weren't for them. In light of the past few weeks' depressing/boring updates I thought I'd try


to balance
it out with some pictures. Enjoy.
(Left)Trying to watch TV .
Daddy-Daughter time
(Right).
Napping in Daddy's office.
Napping outside in the swing with mommy.
Reading my favorite book: Silly Turtle
I recently found my feet. I love them.
Kiersyn weighs 16 lbs now! 94th percentile. Length is undetermined - GI said 23.5 inches (25th percentile), Pediatrician said 25.5 inches (80th percentile). I guess one of the nurses missed the "how to measure" portion of nursing school/3rd Grade...
Check back this weekend for an update following Kiersyn's surgery consultation.
(Left)Trying to watch TV .
Daddy-Daughter time
(Right).
Napping in Daddy's office.
Napping outside in the swing with mommy.
Reading my favorite book: Silly Turtle
I recently found my feet. I love them.
Kiersyn weighs 16 lbs now! 94th percentile. Length is undetermined - GI said 23.5 inches (25th percentile), Pediatrician said 25.5 inches (80th percentile). I guess one of the nurses missed the "how to measure" portion of nursing school/3rd Grade...
Check back this weekend for an update following Kiersyn's surgery consultation.
Labels:
Acid Reflux,
baby GERD,
baby reflux,
GERD,
infant acid reflux,
infant GERD,
infant reflux,
Kiersyn,
Kiersyn Morrow,
Kiersyn Rayne,
reflux,
sandifer syndrome,
sandifer's,
sandifer's syndrome,
swallow study
Thursday, June 23, 2011
Perfect Love Drives Out Fear
It’s been a whirlwind of a week. Last Wednesday was Zoo Day for the Children's Ministry and against my better judgment (I hate zoos with a fiery passion - right up there with Sea World and circuses), I decided to take baby K in order to spend some time with my husband. It was over 100 degrees so we rigged up a tent fan to her stroller and she hardly even broke a sweat! She did great, better than I did. My favorite sign was the one saying “We have created the Gorilla’s natural habitat. Please be quiet and remember you are in their environment.” Oh, right, ok.
Thursday was Movie Night at the church building so I took Kiersyn up for an hour or so until it was time for bed.
Sunday I left with Baby K to see her Pediatric GI at Texas Children’s in Houston. Thankfully, my mom was able to go with us because absolute chaos ensued when we got a few hours out. I-45 was completely shut down due to wildfires and I’ve truly never seen anything like it. There were cars EVERYWHERE. Every surrounding highway, road, gas station, fast food establishment, etc was packed with cars. Cell phones weren’t working because everyone was jamming the towers up and even GPS wasn’t working to tell us how to get around it. It was insanity but 7 hours and several back roads later we made it to Houston. Thank the Lord I was not alone and was able to sit in back and keep Kiersyn happy for the standstill traffic parts.
At Kiersyn’s appointment Monday morning, we talked about how Kiersyn does not do well when we have tried to take her off thickened feeds. The doctor decided to do a swallow study to see why. Kiersyn wasn’t allowed to eat 2 hours before which ended up meaning she had to go much longer than usual before eating. It was very unpleasant, for Kiersyn, for us and for everyone else in the radiology waiting room at Texas Children’s. Once they took her back, Kiersyn drank thin and thickened barium liquids while a radiologist and speech therapist watched the x-rays on a video screen. It was interesting to watch but also intimidating to have doctors standing around discussing my baby. The study basically showed that Kiersyn is not very coordinated at swallowing – instead of sucking and then swallowing, she sucks several times before swallowing, causing liquid to pool in her throat. It also sometimes mildly penetrates her vocal chords which may be the cause of her cough. We were told in order to get her off of thickened feeds we’ll just need to slowly decrease the amount of thickener to give her time to adjust. Good news all around.
However, the doctor told us the thickener we’ve been using, SimplyThick, just had a bulletin put out by the FDA because several premature babies have died from using it. AND some of it is also being recalled. (Some that is sitting in our pantry. Awesome.) She suggested using rice cereal to thicken instead. Well, when we got home I tried this for the first time and it did not go well. At all. Kiersyn choked on her spit up an hour after eating – her face turned nearly purple and she was having serious trouble breathing. It was terrifying. She projectile vomited everywhere. The doctor’s suggestion? Put her back on SimplyThick. Since that seemed insane to me, I tried half the suggested amount of cereal and so far we’ve been good to go.
Tuesday night was “family dinner” – since we all live in the metroplex, we meet up with my mom’s side of the family once a month for dinner. Kiersyn did well, but Danley wasn’t able to go which was disappointing. I am just thankful and so blessed to have my family nearby.
THEN today was Kiersyn’s 4 month appointment with her pediatrician. I hate her check ups. She does not handle vaccines well. I try to plan it so she will be hungry and can have a bottle right after but she still pulls off the bottle to scream. It’s terrible. In addition to shots, we also found out she has a Periorbital Dermoid Cyst under her left eyebrow. It’s a congenital cyst, something she was born with, that has only just now grown enough to be visible. Unfortunately it will continue to grow, and since this type of cyst is dangerous to drain and can cause complications it must be surgically removed. Tomorrow I call to schedule a consultation with a pediatric surgeon.
It seriously seems ridiculous that every time we get past something with Kiersyn, we find something new. I absolutely hate that this time it means surgery.
I also hate that all of this is taking place during Danley’s busiest time ever. It is VBS work week and he is gone sun up to sun down. Next week is VBS and then he is gone to Oklahoma for camp for another week. We are living pretty separate lives right now – he comes home, I update him on Kiersyn and it’s time for bed. He’s doing important work, and I’m so proud of him – It’s just so hard to sit through these appointments without him.
I also hate how much I continue to struggle with worry and emotional exhaustion.
I pray and hope for all this to end for my baby girl. I’m ready for her to be past medications, discomfort, allergies, reflux, surgery… but I’m desperately desiring deliverance from myself – from my tendency to hold on to unending worry. I know worry is rooted in fear and I’m tired of being a fearful person, incapable of giving it to God and letting go.
I found and spoke to another mom whose son had the same surgery Kiersyn will have and she said something that I’m taking to heart. I really have no energy for further reflection so I’ll leave you with her words:
“I feel confident that this journey has taught me a great deal, the least of which is to be thankful for what you have and to not fear what you might lose. Or else, you've already lost it because living in fear is not really living. I'm not sure how long it will take me to get there but that is the direction in which I am heading... living a life without fear.”
Labels:
Acid Reflux,
baby GERD,
baby reflux,
GERD,
infant acid reflux,
infant GERD,
infant reflux,
Kiersyn,
Kiersyn Morrow,
Kiersyn Rayne,
reflux,
sandifer syndrome,
sandifer's,
sandifer's syndrome
Tuesday, June 14, 2011
A Small Series of Unfortunate Events
First, our lawn mower broke and we’ve spent 2 weeks trying to get Tractor Supply to fix it. One of our neighbors even asked if someone had stolen our lawn mower. (We’re usually good about keeping up with it – and I’m ALWAYS complaining about our neighbors who don’t. Oops). Then, the seal broke on our freezer causing it to leak into the fridge and grow a bunch of mold. Then, Danley’s AC/cooling fans in his car went out while we were shopping at an outdoor outlet mall with Kiersyn. We drove the 20 mins home with a very hot, very miserable, angry baby. We were so glad the car was still under warranty. We took it in and turns out it had expired the week before. Then we realized I really need new brakes on my car. THEN for about a week we thought Kiersyn was going to need a $4,000 helmet to fix a flat spot on her head from Sandifer’s causing her to turn her head constantly to one side. It’s been one. thing. after. a
nother.
I’ve spent a lot of time worrying – about the financial aspects of all of these things, about Kiersyn…I mean really I’ve made worrying into an art. It’s been an emotional roller coaster the past couple weeks and I finally woke up to the fact that I am extremely blessed and complaining would be a little ridiculous.
Everything has turned out fine. Someone rang our doorbell and offered to mow our lawn. Then, a family from church moved and left us their fridge. The car cost an arm and a leg but it’s fixed. Kiersyn had her appointment today and they think we can help her head fix itself by repositioning her onto her right side and using neck stretches to encourage her to turn her head to the other side. They will reevaluate in 4-6 weeks.
I’m trying to spend time focusing on all the blessings in my life right now and there are plenty. Top two for now:
1 - Danley’s twin, Bradley, his wife Taryn and their daughter Brynlee stayed with us Friday and Saturday. The guys went to a movie while we stayed with the girls and then Taryn and I went out for some much needed Mommy-time. Even though I think neither one of us saw ourselves having children this early in our marriages/lives it has become such a blessing to me that we have gone through some of the same things relatively close together and I’m so excited our girls are close enough in age that they will be able to play together. AND in an act that made me love them just a little more, Brad and Taryn pretty much cleaned the whole house for us before they left. Um. Thank you B and T. Lifesavers.
2 - Kiersyn is doi
ng/feeling SO much better. We did succeed in getting insurance coverage for her formula and she’s one happy chubby baby. Strangely, the prescribed formula gave her terrible, painful gas and we had to change to the (ONLY) other brand. It terrifies me to ever start solids since a fully “hypoallergenic” formula can still give her so much trouble but I’ll try to save my worry for later. I haven’t even had to increase her medications like we planned – the new formula has helped so much! Thank you for your prayers for Kiersyn.
A sweet family at church gave us their exersaucer - Kiersyn LOVES it... Thanks Roszels!
Labels:
Acid Reflux,
baby GERD,
baby reflux,
GERD,
infant acid reflux,
infant GERD,
infant reflux,
Kiersyn,
Kiersyn Morrow,
Kiersyn Rayne,
reflux,
sandifer syndrome,
sandifer's,
sandifer's syndrome
Subscribe to:
Posts (Atom)