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.”

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