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 :)

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...

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 . . .

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.

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:

6:17am

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.

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.

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 a simple asthma issue - an asthmatic trying to get enough air while drinking from a bottle for 15 straight minutes equals problems - swallowing after every suck may just be too difficult. He gave her an inhaler but I'm not sold on it. Asthma meds can trigger reflux and it is a steroid - it has the possibility of all kinds of behavioral side effects in pediatric patients. Suffice it to say ... almost 5 months and we're still trying to figure out what all is going on!

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 Redman

Standing 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

Beautiful powerful truth. There are so many moments in my life I can look back on and see how they were connected, how God was working when I didn't get it at the time. What comfort it is to know every trial we go through, He is there every step of the way. I don't know how we ever express enough gratitude to our Savior for being totally forsaken so that we would never have to be.

I'm so thankful He is walking with us through such a frustrating time.

Never once, no, we never walk alone

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!

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 by 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.

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.”

A Small Series of Unfortunate Events

So the past couple of weeks have been pretty crazy thus the lack of blog updating.

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. another.

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 doing/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!

Little Laugher

Prayer and Post-Baby Dates

So my wonderful parents, recognizing the amount of stress Kiersyn’s current situation is placing on us, offered to keep K tonight while we went to dinner and a movie. We saw the new Pirates of the Caribbean movie (in IMAX 3D, an experience in and of itself if you’re willing to pay $16 a ticket). We had fun but I was struck by how different “dates” are after having a child. After dinner we had some time to kill and while trying to figure out what to do, I had two thoughts: #1. Wander around the baby dept. at Target and #2. Take a nap in the car. Pre-baby I highly doubt I would have considered either of these options. We did go to Target but it was uneventful besides the woman who yelled at me but that's a story for another time. We headed to the movies and I’m a strong believer that if you’re going to do something, you ought to do it right. That means getting popcorn. This particular theater had those machines where you get to put the butter on yourself. Have you ever considered how ridiculous the concept is? You press a button and instantly have a fountain of butter. Does anyone need a fountain of BUTTER, whose primary make up comes from the FAT found in milk? And have you watched how much people put on it? There’s probably already 4.2 million calories in a large movie theater popcorn and then we make a heart attack readily available to drench it with. Who needs that much butter? Well. I do. In fact I think it’s possible that I enjoy the butter more than the popcorn. If you don’t leave the theater feeling sick, you haven’t enjoyed the full potential of a movie-going experience. But anyway, the movie was good and we came home to a sleeping baby. Amazing! Especially considering she had a rough morning. We had to feed her the old non-prescription formula she is clearly allergic to. The pharmacy lost the prescription for her elemental formula and I spent all day on the phone with Texas Children’s in Houston who informed me her Dr. was not in the office and could not sign a new copy, then her pediatrician, other GI’s in Dallas and anyone who might be able to get us a prescription or have samples of her formula. Yet another hassle and I was so frustrated I was close to losing it. The past few weeks I've had so many moments of anger and frustration - of shaking my fists and demanding change from God. Telling Him why it shouldn't be like this" …as if I know better. I was supposed to have a 100% healthy, happy baby. We’re supposed to be enjoying every moment of the short time she is this little. It shouldn’t be just making it through. I shouldn’t think “If we can just make it past this...” But God heard and He spoke. I realized that in the past two months, during this time of being downright irritated with God, I've had more communication with Him than in a very long time. I might feel like the current situation is unfair but it’s the only one I’ve got. There will always be another busy tomorrow, another stressful day, an eternal list of possibilities and plausibilities. The trouble is not in getting “through this”. It's in being able to see and more fully appreciate the quiet, surprising, rare glimpses of Heaven I do have here. Like little miss Kiersyn Rayne's smile or, for the first time today, her laugh. These are momentary joys that point me toward what we will someday be. In the midst of trial, I have to try to see the hard times not as unfair but as an opportunity to lean into the arms of Christ all day long, for whatever reason. And to have faith that even (if not most of all) on the worst of days - whether it's demons of the past that appear out of nowhere or we are attacked by something new and frightening - God not only demands but deserves a faith that recognizes, respects and adores His light - because Light shines brightest in the darkest of nights.