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.

Couple Pictures

Too sick for a real update -

1. See where the toys are? See where she is? She got there in 15 seconds just by rolling!
2. Computer skills with Daddy
3. Making new friends

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.”